European Journal of Palliative Care THE JOURNAL OF THE EUROPEAN ASSOCIATION FOR PALLIATIVE CARE Committed to People

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Abstral® M Abbreviated Prescribing Information sedative H1 antihistamines, barbiturates, anxiolytics, hypnotics, antipsychotics, Abstral® M 100 micrograms, 200 micrograms, 300 micrograms, 400 micrograms, clonidine and related substances may produce increased CNS depressant effects. 600 micrograms and 800 micrograms Sublingual Tablets (fentanyl) Respiratory depression, hypotension and sedation may occur. Concomitant use of Abbreviated Prescribing Information alcohol or partial opioid agonists/antagonists (e.g. buprenorphine, pentazocine) is not Please refer to Summary of Product Characteristics before prescribing. recommended. Not recommended for use in patients who have received MAO inhibitors within 14 days. Pregnancy: Safety in pregnancy not established. Use only Presentation: Sublingual tablets containing 100 µg, 200 µg, 300 µg, 400 µg, 600 µg and when necessary. Long-term treatment may cause withdrawal symptoms in newborn 800 µg of fentanyl. Indication: Management of breakthrough pain in adult patients infant. Do not use during labour and delivery since fentanyl crosses the placenta and using opioid therapy for chronic cancer pain. Dosage and Administration: Only for may cause respiratory depression in foetus or infant. Lactation: Fentanyl is excreted use in patients who are considered tolerant to their opioid therapy for persistent into breast milk and should only be used if the benefits clearly outweigh the potential cancer pain (i.e. using 60 mg oral morphine per day or 25 micrograms transdermal risks for both mother and child. Driving, etc: Fentanyl may impair mental or physical fentanyl per hour or equivalent). Administer directly under the tongue and allow to ability. Advise patients not to drive or operate machinery if they become dizzy, drowsy dissolve without chewing, sucking or swallowing. Adults: Initially 100 µg, titrating or experience blurred or double vision. Undesirable Effects: Typical opioid side-effects upwards as necessary. Patients must be monitored closely by a health professional are to be expected. The most serious adverse reactions are respiratory depression, during the titration process. Once an appropriate dose has been established patients hypotension and shock. The most commonly reported adverse reactions include should be maintained on this dose and should limit consumption to a maximum of four nausea, vomiting, constipation, headache, somnolence/fatigue and dizziness. See doses per day. Elderly and patients with renal and hepatic impairment: Special care SPC for details of these and other undesirable effects. Overdose: Immediate needed in titrating elderly patients and patients with kidney or liver dysfunction; management includes removal of any remaining tablets from the mouth, physical observe for signs of fentanyl toxicity Children and adolescents: Must not be used in and verbal stimulation and an assessment of the level of consciousness. A patent patients less than 18 years of age. Contraindications: Hypersensitivity to any of the airway should be established and maintained, and assisted ventilation initiated if ingredients; opioid-naïve patients; severe respiratory depression or severe obstructive appropriate. Adequate body temperature and parenteral fluid intake should be lung conditions. Warnings and Precautions: Instruct patients and carers to keep maintained. Consider the use of opioid antagonists. Pack Size and Basic NHS Price: tablets out the sight and reach of children. Ensure patients and carers follow Abstral 100-400 µg 10 tablets: £49.99 Abstral 100-800 µg 30 tablets: £149.70. instructions for use and know what action to take in case of overdose. Before Marketing Authorisation Numbers: PL 16508/0030-35. Legal category CD POM. starting Abstral, ensure long-acting opioid treatment for persistent pain is stable. Further information is available from the Marketing Authorisation Holder ProStrakan Dependence may develop upon repeated administration of opioids. Risk of clinically Ltd, Galashiels, TD1 1QH, UK Date of PI Preparation September 2008. significant respiratory depression. Particular caution needed during dose titration in patients with COPD or other conditions predisposing to respiratory depression. Administer with extreme caution in patients who may be particularly susceptible to the Adverse events should be reported. Reporting forms and intracranial effects of hypercapnia. Opioids may mask the clinical course in patients information can be found at www.yellowcard.gov.uk. Adverse with head injuries. Use with caution in patients with bradyarrhythmias, hypovolaemia, events should also be reported to ProStrakan Ltd on 01896 664000 hypotension, mouth wounds or mucositis. Monitor carefully use in elderly, cachectic and debilitated patients. Possible symptoms of withdrawal on cessation are anxiety, References tremor, sweating, paleness, nausea and vomiting. Interactions: Fentanyl is 1. Data on file - Study EN3267-005. metabolised by CYP3A4. Use with caution if given concomitantly with CYP3A4 2. Lennernäs B et al. Br J Clin Pharmacol 2005; 59 (2): 249-253. inhibitors such as macrolide antibiotics, azole antifungal agents, protease inhibitors or 3. Bredenberg S et al . Eur J Pharm Sci 2003; 20 : 327-334. grapefruit juice. Concomitant use of other CNS depressants, such as other morphine IM-M017/0054b derivatives, general anaesthetics, skeletal muscle relaxants, sedative antidepressants, Date of preparation: March 2009 Plenary X

EAPC ONLUS

11th Congress of the European Association for Palliative Care (EAPC) Vienna, Austria, 7–10 May 2009

ABSTRACTS

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11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 3 ForewordPlenary X

Dear Congress participant

Welcome to Vienna 2009!

It is with great pleasure that we present you with this book of abstracts, published by the European Journal of Palliative Care. This book offers a complete guide to the scientific programme of the 11th Congress of the European Association for Palliative Care (EAPC). The programme has been put together through the collaborative work of the Scientific Committee and a very active International Multidisciplinary Advisory Board, and represents two years of planning, preparation, review and sometimes difficult decisions. We could not have produced it without the support of Heidi Blumhuber (EAPC) and Sandrina Josephs (INTERPLAN), whom we thank for their support, guidance and patience.

This Congress is entitled ‘Committed to People’. As Chairs of the Scientific Committee, our commitment is to offer you a dynamic and innovative scholarly programme that reflects contemporary palliative care. We – a physician and a nurse involved in the delivery of palliative care through clinical practice, research and education – have worked together in partnership to ensure that we would match the ethos that has become the EAPC’s – One Voice, One Vision. The programme reflects the values and aspirations of all those involved in palliative care. We hope it will give you an opportunity to learn from each other, as we have done ourselves in preparing this Congress.

Our pre-conference workshops and ‘Meet the Expert’ sessions will provide both the science and art of palliative care, from genetics to music therapy, from understanding palliative care needs to current policy and practice. For the first time in an EAPC congress, the needs of volunteers will also be included. We have brought together an international array of experts, who will share with you their work and their passion for palliative care. You will hear them in our ‘Plenary’ and ‘Invited Speaker’ sessions. We are particularly delighted that many editors of key international palliative care journals will be joining us. This Congress will offer didactic lectures, opportunities for discussion, and presentations demonstrating current advances in terms of research, education and policy. Using art and drama, we will try to unfold the rich tapestry that expresses the reality of 21st century end-of-life caring.

Poster presentations are a key part of this Congress. Over two days, about 900 posters will show the wealth of knowledge that now exists in the field of palliative care. As in previous congresses, the best posters will be awarded prizes in recognition of their scientific merit.

4 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Foreword

We invite you to take part in this interesting programme, and to join in with the many delegates from around the world in celebrating our palliative care heritage, here in this magnificent city of Vienna. Vienna is a wonderful city, full of history and beauty, and we hope you will take the time to visit it.

It is also appropriate that we remember the ‘founding fathers’ of the EAPC who have left us since the last Congress in Budapest in 2007. Professor Vittorio Ventafridda, Italy, and Professor Charles-Henri Rapin, Switzerland, believed in the benefits that collaboration across the world can bring to the development of palliative care. Here in Vienna, we also particularly remember Sr. Mag. Hildegard Teuschl CS, a pioneer of the Austrian hospice and palliative care movement, who died in February of this year. This Congress is their legacy and we remember them with affection and respect.

We extend our thanks to the members of the local organising committee, who have worked very hard to welcome us here, and to the EAPC Board of Directors and President, Lukas Radbruch, who trusted us to organise the scientific programme.

Most of all, we look forward to meeting you here in this impressive Austria Center Vienna, and hope that you will leave the 11th Congress of the EAPC with your expectations fulfilled, feeling energised for the challenges that lie ahead.

With greetings from the Chairs of the 11th Congress of the EAPC

Friedemann Nauck Phil Larkin Chair, Scientific Committee Co-Chair, Scientific Committee

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 5 Committeeslenary X

SCIENTIFIC COMMITTEE ADVISORY BOARD AND REVIEWERS

Friedemann Nauck, Chair, Germany Amy Abernethy, USA Martina Kern, Germany Philip Larkin, Co-Chair, Ireland Julia Addington Hall, UK David Kissane, USA Bernd Alt-Epping, Germany Eberhard Klaschik, Germany Franco de Conno, Italy Bertil Axelson, Sweden Peter Lawlor, Ireland Steffen Eychmüller, Switzerland Johann Baumgartner, Austria Wojciech Leppert, Poland Carl-Johan Fürst, Sweden Claudia Bausewein, UK Rudolf Likar, Austria Geoffrey Hanks, UK Mike Bennet, UK Mari Lloyd Williams, UK Katalin Hegedus, Hungary Michaela Bercovitch, Israel Jon Loge, Norway Stein Kaasa, Norway Gian Domenico Borasio, Germany Urska Lunder, Slovenia Hans G Kress, Austria Bert Broeckaert, Belgium Staffan Lundstrom, Sweden Maria Nabal, Spain Eduardo Bruera, USA Lars Johan Materstvedt, Norway Sheila Payne, UK Cinzia Brunelli, Italy Sebastiano Mercadante, Italy Imke Strohscheer, Austria Mary Callaway, USA Guido Miccinesi, Italy Heidi Blumhuber, Secretary, Italy Augusto Caraceni, Italy Daniela Moisiou, Romania Carlos Centeno, Spain Katalin Muszbek, Hungary Nathan Cherny, Israel Faith Mwangi Powell, Uganda LOCAL COMMITTEE Harvey Chochinov, Canada Tony O'Brien, Ireland David Clark, UK Margaret O’Connor, Australia Hans G Kress, Chair, Austria Jim Cleary, USA David Oliver, UK Franz Zdrahal, Co-Chair, Austria Massimo Costantini, Italy David Oliviere, UK Gerda Hohenberg, Austria Nessa Coyle, USA Christoph Ostgate, Germany Rudolf Likar, Austria David Currow, Australia Lise Pedersen, Denmark Helen Neubacher, Austria Liliana de Lima, USA Jose Luis Pereira, Switzerland Imke Strohscheer, Austria Jorge Eisenchlas, Argentina Carlo Peruselli, Italy Michaela Werni-Kourik, Austria John Ellershaw, UK Francoise Porchet, Switzerland Frank Elsner, Germany Josep Porta-Sales, Spain Robin Fainsinger, Canada Russel K Portenoy, USA EAPC HEAD OFFICE Marie Fallon, UK Phillippe Poulain, France Frank Ferris, USA David Praill, UK Heidi Blumhuber, Executive Officer Marilene Filbet, France Lukas Radbruch, Germany Amelia Giordano, Deputy Officer Pamela Firth, UK Julia Riley, UK Luis Alberto Florez Perez, Spain Javier Rocafort Gil, Spain Kathy Foley, USA Rainer Sabatowski, Germany Karen Forbes, UK Esther Schmidlin, Switzerland Katherine Froggatt, UK Dirk Schrijvers, Belgium Giovanni Gambassi, Italy Jane Seymour, UK Paul Glare, USA Per Sjögren, Denmark Luigi Grassi, Italy Patrick Stone, UK Sophy Gretton, UK Florian Strasser, Switzerland Mogens Groenvold, Denmark Nigel Sykes, UK Neil Hagen, Canada Carol Tishelman, Sweden Richard Harding, UK Albert Tuca i Rodriguez, Spain Dagny Haugen, Norway Bart van den Eynden, Belgium Katalin Hegedus, Hungary Elena Vvendenskaya, Russia Katharina Heimerl, Austria Raymond Voltz, Germany Jorunn Helbostad, Norway Charles von Gunten, USA Irene J Higginson, UK Herbert Watzke, Austria Marianne Hjermstad, Norway Marie Chantal Wood-Pillette, France Peter Hoskin, UK Giovanni Zaninetta, Italy Jusic Anica, Croatia Boris Zernikow, Germany

6 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Contents

Contents

Foreword 4 Friedemann Nauck, Phil Larkin Committees 6 Plenary sessions 9 Parallel sessions 25 PS 01 Is research collaboration all talk and no trousers? Lessons from the UK “cancer experiences” (CECO) 26 PS 02 EPCRC – Improving assessment and classification of cancer pain – the Why, the How and the Progress? 26 PS 03 OPCARE – addressing End of Life Issues 26 PS 04 PRISMA session: Culture in end of life research 27 PS 05 Neurology and non-cancer in palliative care 28 PS 06 Palliative care in the community: coming of age 28 PS 08 Palliative care in older people – End of life care in long-term care facilities 29 PS 09 Europal: Best Practice in Palliative Care 30 PS 10 Bereavement and Loss 30 PS 12 Education and Training 30 PS 13 Clinical decision making around ethics – exploring the difficulties 30 PS 14 Team-working & conflict management 31 PS 15 Palliative care peer-reviewed journals: the editors tell all 32 PS 16 Spirituality – an issue for palliative care 32 PS 17 Complexity in Symptom Management 32 PS 18 Palliative care as a public health issue 33 PS 19 Palliative Nursing 33 PS 20 EPCRC – Cancer cachexia in the palliative care context 34 PS 21 EPCRC – Depression in palliative care – challenges and new knowledge 34 PS 22 Advocacy, a key activity for the development of hospice and palliative care 35 PS 23 Global funding: an important issue for Hospice and Palliative Care 35 PS 24 Interventional pain therapy – A contradiction in Palliative Care? 36

Continued overleaf

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 7 Contents

Free communication sessions 37 FC 01 Pain Therapy 38 FC 02 Dyspnoea and insomnia 39 FC 03 Gastrointestinal Symptoms and Cachexia 40 FC 04 Assessment and Measurement Tools 41 FC 05 Education 42 FC 06 Committed to People 43 FC 07 End of Life Care 44 FC 08 Ethics in Palliative care 45 FC 09 Psychology and Communication 46 FC 10 Organisation of Services 47 FC 11 Policy 49 FC 12 Research Methodology 50 FC 13 Children 51 FC 14 Non-Cancer 52 Poster sessions (Friday) 55 Poster sessions (Saturday) 135 Index 215

8 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Plenary sessions

Plenary sessions sessions Plenary

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 9 Foreword sessions Plenary

10 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Plenary sessions

P 2.1 The treatment of cancer pain over the past 30 years: controversies, dogma and evidence

Hanks G sessions University of Bristol, Department of Palliative Medicine, Bristol, United Kingdom Plenary

As in any area of clinical medicine, the management of In this presentation, some of the controversies in particular conditions or situations has evolved over a cancer pain management will be reviewed in the light variable time and that process is necessarily of current best practice. The lessons to be learned – characterised from time to time by differences of some old, some new – and the implications for opinion between experts. Sometimes the contentious clinical practice will be discussed. Topics will include points are fiercely debated and this is particularly the the oral route for morphine, morphine metabolism, case when dealing with difficult issues where the morphine-induced hyperaesthesia and paradoxical available evidence is equivocal. Usually, there is pain, opioid rotation, and the effectiveness of pain resolution or compromise, but in some instances control in hospital-based palliative care services differences in opinion and approach remain. compared with hospices ■

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 11 Plenary sessions

P 2.2 Challenges and opportunities in large clinical trials of drugs for symptom control

sessions Portenoy R K Beth Israel Medical Center, Department of Pain Medicine and Palliative Care, New York, USA Plenary

Adequately powered randomised controlled clinical addressing the problem of variation, the management trials in a sample that is fully representative of the of respondent burden as a barrier to collection of target population represent the gold standard for clinically relevant data, the missing data problem clinical evidence of drug efficacy and safety. Many during repeated dose trials, the problem of intercurrent issues must be confronted to bring more of this high- disorders and the need for treatment during a study, quality evidence to the therapeutics for symptom and the issue of funding sources. control used in populations with advanced illness. The instrumental challenges include standardisation The first is to understand the nature of this endeavour, during multicentre trials, creating methods to safely including the positioning of this approach in an assess the dose-response, and assessing adverse evidence hierarchy, the distinction between efficacy events in those with serious illness. and effectiveness, and the differing goals of explanatory and pragmatic trials. There is a still small, but steadily growing, number of randomised controlled trials for symptomatic therapies The second is to undertand the methodological in advanced illness, which demonstrates the challenges, including those that are conceptual and strategies that are now being employed to address those that are instrumental. these challenges. More work of this type is needed ■

The conceptual challenges include the ethical problem posed by vulnerable populations, the trade-off between finding a signal and losing generalisability in

12 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Plenary sessions

P 3.1 Paediatric respite hospices: are they needed?

Leong D S The Shooting Star Children’s Hospice, London, United Kingdom sessions Plenary The first worldwide children’s hospice was opened in the diagnoses (for example, 9% of the open caseload at The United Kingdom (UK) in 1982. It was the vision of Sister Shooting Star Children’s Hospice). Frances Dominica that grew from her personal experience of supporting Helen (a young girl with a brain One of the differences between adults’ and children’s tumour) and her family. She recognised that there were hospice care is the involvement of the child’s parents and many other children and families needing this support family. Parents are usually the primary carers for their life- and, in response to this need, created Helen House. limited or terminally-ill child, so it is their voice that the Since then, a further 40 services across the UK have healthcare team listens to when determining care and welcomed children and young people with life-limiting services for the child or young person. and terminal conditions, together with their families. There is sometimes a question about whether the term There are clear differences between service provision ‘hospice’ is the right term for children’s care – and for adults and children with life-limiting and terminal whether that acts as a block to care for some children, conditions and this plenary session seeks to create as parents have their own interpretation on the word – a greater understanding of the issues faced by all and about how to promote a public understanding of age groups. the concept of hospice care for children.

In the UK, hospice care provision for adults is far greater In the UK, the government has recently issued various than for children. Most children will live very near an reviews centred around eight strategic objectives, adults’ hospice, but may be over an hour away from including a focus on care being available at a place of their nearest children’s hospice. the child’s choice and increasing emphasis on 24/7 care in the community and the child’s own home. This is in There are potential opportunities of short break provision line with feedback from families, who in general prefer from both children’s and adults’ services working care and support in their own homes. We can expect together. However, there may be difficulties in planning this to impact on the future development of new short breaks for older teenagers/young adults, due to paediatric respite hospices, as the best model of care is the nature of work undertaken in adults’ hospices explored to benefit the families. (largely centred on end-of-life care). Adults’ nurses are not always trained in managing the specific health care At the end of this session, participants will have: needs of teenagers/young adults, which would create ● Developed an understanding of the concept of anxiety for the staff, the young person and their family. children’s hospice care ● Considered the differences between hospice care in Adults’ hospices are now catering more for short break children’s services and hospice care in adults’ services visits, but the demands put upon them for end-of-life ● Developed an understanding of the benefits and care are so much greater and, on the whole, the majority drawbacks of children’s hospice care of their patients have oncology diagnoses. In children’s ● Considered the issues faced by families without hospice services, there are far fewer with such paediatric respite hospices ■

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 13 Plenary sessions

P 3.2 The Budapest Commitments in Vienna I: how it started

Fürst C J,1 Radbruch L2 1Stockholms Sjukhem Foundation, Stockholm, Sweden 2 sessions RWTH Aachen, Aachen, Germany Plenary

The concept of the ‘Budapest Commitments’ was Commitments from palliative care associations in the launched at the European Association for Palliative following 18 countries are available: Austria, Belgium, Care (EAPC) Congress in Budapest in June 2007, as a Croatia, the Czech Republic, Denmark, Germany, collaboration between the EAPC, the International Greece, Hungary, Israel, Italy, Lithuania, the Association for Hospice and Palliative Care (IAHPC) Netherlands, Norway, Romania, Spain, Sweden, and the World Palliative Care Alliance (WPCA). The aim Switzerland and the United Kingdom. is to encourage national associations to commit themselves to one or several achievable goals in the The presentation of the Commitments and the follow- development of palliative care. The Commitments up of the results is an excellent opportunity to share – including the goals, the methods to reach the goals experiences, successes and resistances to change in and the means of follow-up – are published on the countries with different histories of palliative care, EAPC website. different healthcare organisations and different economical resources ■

14 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Plenary sessions

P 3.3 Palliative care for older persons – partnership in practice

Husebø B S University of Bergen, Department of Public Health and Primary Health Care;

Red Cross Nursing Home, Bergen, Norway sessions Plenary

In the last century, modern medicine made it possible Advancing age is also associated with a high to prevent and treat illness. Nevertheless, since the prevalence of pain, estimated to be as much as four beginning of human existence, people are born and times higher than among younger adults. Many elderly, people die. A hundred years ago, mean European living at home or in NHs, experience both dementia longevity was 49 years and over 50% of the population and pain. Unable to communicate, these patients died before the age of 20. express their pain in ways that are different from those without dementia. Thereby, pain and discomfort may Today, in the industrialised world, more than half of us trigger behavioural disturbances, such as aggression will reach at least 80 years of age, while children and agitation. Instead of pain treatment, approximately account for less than 1% of all deaths. Moreover, fewer 25% of the demented dying patients receive children are being born and mankind is getting radically antipsychotic medications and restraints; they die older. In all previous epochs, the home was the major earlier and reduced life expectancy is shown. arena of birth and death. In the 20th century, in all developed industrial nations, these events underwent a For the last twelve years, our team, located in Norway’s radical transfer to healthcare institutions. largest NH, has kept on to the aim of integrating palliative care in dementia care. There are several It is estimated that 24 million people worldwide have reasons why we should have expected challenges. NH dementia today. In Europe, the number of people patients have substantial needs for the multidisciplinary with dementia is approximately 10 million, and is approach of palliative care. In addition, palliative care expected to double within the next 30 years. In nursing staff needs support and increased competence homes (NHs), 80% of patients have dementia, a regarding dementia care, as in general, so far, they are progressive irreversible syndrome characterised by not prepared to care for patients with dementia-related widespread impairment of mental function, which problems. The lesson learned from palliative care includes memory loss, language impairment and clarifies four main causes of malpractice in end-of-life behavioural disturbances. Caused by demographics, care for patients with dementia: the mortality rate due to dementia is increasing faster ● Lack of resources than any other condition, and dementia is the leading ● Lack of ethical decision-making and communication cause of death in Western societies. ● Lack of pain and symptom assessment ● Lack of pain and symptom management. Specialised palliative care services have proliferated worldwide, initially focusing on cancer care; but they In this lecture, the main focus will be on the difficulty to are increasingly expanding to include patients with assess and treat pain in dementia, the proxy rater other terminal diseases, for example dementia. function in pain assessment, and challenges regarding Although guidelines exist, only a small percentage of the cerebral pain process. The Mobilisation- NH patients receive this competent palliative care at Observation-Behaviour-Intensity-Dementia (MOBID 2) the end of life. Pain Scale, a new nurse-administered assessment tool

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 15 Plenary sessions

to register pain originating from the musculoskeletal Older, frail persons with multiple illnesses need access system and from internal organs, will be presented. to competent palliative care. Their main target is not to Using this instrument, it was demonstrated that die but to live until death becomes their preferred patients with dementia have more pain, but have solution. While skills and competence in palliative care significantly less pain treatment, than those without are needed, the main challenge is life support, skilled dementia. geriatric care and competence in symptom management, as well as communication and ethics ■ sessions Plenary

16 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Plenary sessions

P 4.1 Who is a palliative care patient? Defining the palliative care population

Kaasa S1, Oldervoll L,1 Hjermstad M J,2 Løhre E,3 Knudsen A K,1 Loge J H,4 European Palliative Care Research Collaboration 1 Faculty of Medicine, Norwegian University of Science and Technology, Department of sessions Cancer Research and Molecular Medicine, Trondheim, Norway 2Oslo University Hospital, Ullevål, The Cancer Center, Oslo, Norway Plenary 3Trondheim University Hospital, Cancer Department, Trondheim, Norway 4Ullevål University Hospital, Department of Clinical Cancer Research, Oslo, Norway

Evidence-based practice (EBP) is the application of conducted. This information will be used as a basis for evidence-based medicine (EBM) to daily clinical the development of an international dataset on how to practice. EBM is offered to the patient to optimise the classify palliative care patients. treament. From a societal perspective, EBM may guide the choice of the most cost-effective treatment to any A systematic search in two relevant databases to given group of patients. identify palliative care literature of interest was performed. The search strategy was based on the Palliative care evidence-based guidelines (EBGs) are expressions ‘palliative’, ‘hospice’ or ‘terminal care’ and developed nationally and internationally, based upon ‘randomised controlled trials’, and was limited to EBM, in order to guide EBP. One critical step in their English papers on adults with cancer. This obtained 983 development is to determine whether the findings from hits (MEDLINE 766, Embase 217). All abstracts were clinical studies can be generalised and applied; read and categorised as relevant or not according to consequently, it is fundamental to define the patient study design, population, type of intervention and population. endpoint.

To classify palliative care, several core domains have Results from this systematic review will be presented, been identified, including ‘patient and caregiver’, ending up with a first recommendation on domains that ‘professional’, ‘service’, ‘health and social policy’ and are candidates for an international palliative care patient ‘research’ (Currow et al. J Pain Symp Manage, 2008). classification system and that may contribute to improve EBGs in palliative care. This set of domains will In order to evaluate key domains for classifying the be further explored through a systematic approach, palliative care patient population from a research and including expert opinions (Kaasa et al. J Clin Oncol, clinical perspective, a systematic review was 2008) ■

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 17 Plenary sessions

P 4.2 The Budapest Commitments in Vienna II: results so far and the future

1 2

sessions Radbruch L, Fürst C J 1RWTH Aachen, Aachen, Germany 2Stockholms Sjukhem Foundation, Stockholm, Sweden Plenary

The ‘Budapest Commitments’ – including the goals, Different organisations have reached different levels of the methods to reach the goals and the means of fulfilment of goals and success. The Commitments follow-up – are published on the European have been used as an incentive to initiate national Association for Palliative Care (EAPC) website. So far, advocacy projects. The EAPC will explore possible 22 palliative care associations in 18 countries have ways of supporting the member organisations in their contributed. The Commitments include a wide range work with the Commitments. The experience of the of topics, from education, research, networking, public Budapest Commitments can serve as an inspiration awareness, policy and quality to definition of for organisations in other European countries and standards and volunteers. around the world ■

18 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Plenary sessions

P 4.3 Palliative care for dementia patients and benefits of cross-national longitudinal studies

Van der Steen J T sessions VU University Medical Center, EMGO Institute, Department of Nursing Home Medicine and Department of Public and Occupational Health, Amsterdam, the Netherlands Plenary

Palliative care is as applicable to dementia patients as example, combined analyses addressed effectiveness well as to patients facing other life-threatening diseases. of oral versus parenteral antibiotics for pneumonia Because of the large and increasing number of people patients. Because post hoc combining of data requires who die with dementia, research specific to end-of-life comparability – or more difficult equalising of design and care in patients with dementia is highly relevant. key variables – using similar instruments from the outset is preferable. Ongoing (longitudinal) studies on end of The majority of studies performed so far, mostly in the life with dementia share a number of instruments. USA, had a qualitative or small-scale retrospective design. Major problems were identified, including overly A study in the Netherlands assesses recently admitted aggressive curative treatment and undertreatment of nursing home residents and associations for early care symptoms. The evidence base for effectiveness of planning with end-of-life experiences. Preliminary treatments to provide comfort or increase family analyses show that addressing palliative care goals satisfaction with care is small. shortly after admission is associated with an increase in satisfaction with care towards the end of life. Studies When trials are inappropriate, innovative alternative elsewhere may examine similar associations. designs are needed. Large cross-national longitudinal studies potentially show validity of results in different In conclusion, international longitudinal studies are settings. Previous post hoc combining of US and Dutch preferably designed to complement each other studies on pneumonia in dementia patients illustrates prospectively and are valuable in contributing to the benefits of comparing treatments and outcomes and evidence on effectiveness of treatment in end-of-life confirmation of validity of findings and instruments. For care in patients with dementia ■

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 19 Plenary sessions

P 5.1 Clinical decision-making around ethics – how well are we prepared?

Simon A Akademie für Ethik in der Medizin, Göttingen, Germany sessions Plenary According to the WHO definition, palliative care is an persons involved, with their respective ethos, are able to approach that improves the quality of life of patients accept responsibility for. and their families facing the problems associated with life-threatening illness. The prevention and relief of Leading such a shared decision-making process suffering, the treatment of pain and other problems, requires an ethical competence, which has to be physical, psychosocial and spiritual, are aims that acquired and continually enhanced by training and determine and motivate the actions of physicians, further education – but also by personal experience and caregivers and representatives of further professions by learning from examples. Some aspects of such an working in palliative care. They are the core of what ethical competence are: could be characterised as the ethos of palliative care. ● Moral sensitivity ● Sense of responsibility Such an ethos is an important prerequisite but not a ● Being aware of the people involved in a conflict guarantee for good clinical decision-making around ● Being aware of one’s own values and attitudes ethics. The reason for this is that, in clinical decision- ● Being aware of other people’s attitudes making (for example, when withholding or withdrawing ● Being able to give reasons for one’s own values life-sustaining treatment or introducing terminal ● Exchange, comparison and assessment of sedation), there may be differing ideas within the arguments medical team about what constitutes a morally ● Balancing the arguments, decision-making acceptable, necessary or forbidden action in concrete competence situations, despite general agreement on the basic aims ● Implementation and justification of decisions. of palliative care. Furthermore, patients and their relatives possess their very own aims and values, which In difficult cases, the process of shared decision-making may not be consistent with those of the medical team in may be supported by clinical ethics consultation. attendance. In such cases, it is not sufficient for the Relevant structures – for example, clinical ethics various people involved to just recollect their respective committees or clinical ethics consultants – exist in US ethos. Instead, a shared decision-making process is health facilities nearly all over the country; in Europe, necessary, in which – by means of talks and exchange they are also more and more present ■ of arguments – solutions should be found that all the

20 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Plenary sessions

P 5.2 Reflections on the Budapest Commitments – a project for a quality palliative care in Hungary

Hegedus K sessions Semmelweis University, Institute of Behavioral Sciences, Budapest, Hungary Plenary

In Hungary, in spite of existing guidelines (2002) and To achieve this, we are currently going through the minimum standards (2004), there are still a lot of quality- following processes: related problems in the provision of palliative care. One ● Updating the quality protocols, special criteria and of the major issues is that there is not enough emphasis quality control, in collaboration with the Ministry of on the roles and tasks of physicians, as nursing care is Health, the National Health Insurance Service, the dominating. In 2009, the Hungarian National Health National Public Health Service and the Medical Insurance Service is increasing the number of palliative Officer Service (completion expected in 2009) care home services, and this may lead to a further ● Updating and supervising the realisation of the deterioration in the quality of the service. Also, the National Cancer Control Programme (2006) with the Hungarian specialists need to examine very urgently the help of the National Health Council, with a special meaning of palliative care. emphasis on palliative care development (completion expected in 2009) Within the framework of the ‘Budapest Commitments’, ● Establishing an inpatient palliative care service we have committed ourselves to: in a university hospital (project over the next ● Develop the quality of palliative care, promote real three years) ■ multidisciplinarity and specify the role of physicians within the palliative care team ● Improve education and training of physicians in the field of palliative care.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 21 Plenary sessions

P 5.3 The impact of palliative nursing, a global perspective

O’Connor M Palliative Care Research Team, Monash University, School of Nursing and Midwifery, sessions Melbourne, Australia Plenary

As palliative care has developed as a specialty of its This session will discuss the impact of the professional own, nurses, in many parts of the world, have become role of nurses in palliative care, in particular the more visible in all aspects of palliative care – from opportunities for specialist practice. Nurses play a key establishing services and shaping practice to clinical role in shaping the future of the discipline, and leadership, sole practitioner roles, management, developing roles for palliative care nursing depends on education, research and policy development. At the the foundations that have been laid in our current same time, in other parts of the world, nursing healthcare systems. So roles such as nurse practitioner expertise remains undervalued and underutilised. and primary health care nurse need to be promoted, Despite these disparities, however, the clinical role of with good evidence to back their development. palliative care nursing is unarguably central in addressing the core needs of the dying person and Increased community awareness of, as well as their family and carers, particularly in places where governments’ support for, palliative care will lead to healthcare resources are scarce. increased demand for service provision. Promoting newer roles for palliative care nursing will involve Palliative care nurses operate in a variety of clinical courageous creativity, particularly in parts of the world settings, where they may work alone or in variously where healthcare systems are increasingly struggling to constructed teams. Models of care also vary from meet needs ■ specialist consultancy services to primary healthcare providers and acute services.

22 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Plenary sessions

P 6.1 Narrative and stories in palliative care

Oliviere D St Christopher’s Hospice, Education Centre, London, United Kingdom sessions

‘At the core of the practice of care is storytelling … To children in a creative and non-threatening way, to

attend to a person’s stories is to enable his or her self- promote healthier attitudes to death and dying in Plenary discovery and that is an act of care.’ (Frank, 2009) themselves and their teachers, parents and carers. Children and young people are linked up with patients To be human is to be in a story. Everyone has a story in reaching the end of their lives. The children and young their life. Patients’ lives are made up of stories. Human people listen to the patients’ stories and ask questions. beings are storytelling creatures, conditioned by their The four-session project involves the wider school collective history, not only to report their experiences community and is proving a major tool in and emotions in story, but to discover who they are St Christopher’s health promotion and public education through their stories (Frank, 2009). Through the means strategy. It is featured as an example of innovative of narrative and storytelling, patients recount their pain, practice in the UK’s first End of Life Care Strategy suffering and what matters to them and to their families. published in 2008.1 A story gives us knowledge but it also allows us to acknowledge the person and affirm the experience. The experience not only allows young people to Working with illness stories can help maximise and explore and create healthier attitudes towards illness, harness the meanings and/or experiences as well as loss, death and bereavement in relationship with a real the resources/strengths of patients and families patient, but also offers an opportunity for that therapeutically. Stories can help patients to find patient–pupil narrative to speak to the wider world ■ coherence in their lives, to understand the past and to know that, despite all obstacles, there are some Patient’s comment choices in how they cope and hope for the future. ‘I came alive when the teenagers were here … they’ve Stories can be ‘re-storeyed’. got all their life ahead of them.’

This presentation will consider the past, present and Young person’s comment future of narrative and stories in palliative care. Stories ‘I felt happy doing the art work … it took my mind off are key to unlocking the holistic model, but there are death and put my mind on understanding that we all also dangers and ethical concerns. Dominant have to die some day.’ institutional and professional narratives can have a negative impact on some individuals and their networks. Patient’s comment Examples of the positive power of narratives will be ‘I’m glad you take this seriously. I feel I’ve got something given from narrative medicine, research and education. that the children can learn from.’ The presentation will end with a live performance by the BRIT School. Young person’s comment ‘At the start I felt a bit shakey ’cos I thought it would The effect of patient narrative is illustrated through the smell and be full of sick people, but they were just St Christopher’s Schools Project. The partnership normal.’ between patients and young people, in creating and Reference recreating their stories of life and illness through art, 1. Department of Health. End of Life Care Strategy. Promoting high drama and music, aims to introduce hospice to school quality care for all adults at the end of life. London: DH, 2008.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 23 Plenary sessions sessions Plenary

24 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Parallel sessions

Parallel sessions

PS 01 Is research collaboration all talk and no trousers? Lessons from the UK “cancer experiences” (CECO) 26 PS 02 EPCRC – Improving assessment and classification of cancer pain – the Why, the How and the Progress? 26 PS 03 OPCARE – addressing End of Life Issues 26 PS 04 PRISMA session: Culture in end of life research 27 PS 05 Neurology and non-cancer in palliative care 28 sessions PS 06 Palliative care in the community: coming of age 28 PS 08 Palliative care in older people – End of life care in long-term care facilities 29 Parallel Parallel PS 09 Europal: Best Practice in Palliative Care 30 PS 10 Bereavement and Loss 30 PS 12 Education and Training 30 PS 13 Clinical decision making around ethics – exploring the difficulties 30 PS 14 Team-working & conflict management 31 PS 15 Palliative care peer-reviewed journals: the editors tell all 32 PS 16 Spirituality – an issue for palliative care 32 PS 17 Complexity in Symptom Management 32 PS 18 Palliative care as a public health issue 33 PS 19 Palliative Nursing 33 PS 20 EPCRC – Cancer cachexia in the palliative care context 34 PS 21 EPCRC – Depression in palliative care – challenges and new knowledge 34 PS 22 Advocacy, a key activity for the development of hospice and palliative care 35 PS 23 Global funding: an important issue for Hospice and Palliative Care 35 PS 24 Interventional pain therapy – A contradiction in Palliative Care? 36

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 25 Parallel sessions

PS 01 Is research collaboration all PS 02 EPCRC – Improving (IASP), the Edmonton Classification System for Cancer Pain (ECS-CP) and the Cancer Pain Prognostic Scale talk and no trousers? Lessons from assessment and classification of (CPPS). Both pain characteristics and patient characteristics relevant for cancer pain classification the UK “cancer experiences” (CECO) cancer pain – the Why, the How and were included in the classification systems. All but one of the standardised systems aim at predicting treatment the Progress? response or adequacy of treatment. Several domains PS 01.2 and items used to categorise cancer pain but not formally described as part of a classification system, Sharing experiences on working collaboratively PS 02.1 were also identified and systematised. and setting up a successful collaborative The existing approaches to pain classification in cancer Assessment and classification of cancer pain: patients are different, mostly not thoroughly validated, Payne S A1 why do we need to improve? and none are widely applied. An internationally 1Lancaster University, International Observatory on End accepted classification system for cancer pain could of Life Care, Lancaster, United Kingdom Lawlor P1 improve research and cancer pain management. To 1Our Ladys Hospice and St James’s Hospital, Dublin, achieve this, further research will include patients’ and Background: The Cancer Experiences Collaborative Ireland experts’ opinions, analyses of existing data sets on (CECo) is an initiative to improve the quality and cancer patients having pain, and empirical data quantity of supportive and palliative care research in Failure to formally assess pain is a barrier to optimum collections. the United Kingdom that was funded for 5 years by a cancer pain (CP) management. The formal use of CP national consortium after a competitive tendering assessment and classification tools has been process in 2006. CECo brings together leading research inconsistent in clinical practice. This may be due to a PS 02.3 centres based in five universities, together with cancer mix of instrument and clinical environment related patients and family carers (called research partners), factors: choosing from a confusing multiplicity of tools; What progress have we made? four large hospices and many key stakeholders such as lengthy and burdensome tools in the frail advanced Help the Hospices. CECo aimed to deliver: increased cancer population; failure of scores to intuitively Hjermstad M J1, Fayers P2, Caraceni A3, Gibbins J4, Kaasa S5, research grant capture, high quantity and quality communicate clinical information or be available at the European Palliative Care Research Collaborative (EPCRC) outputs, capacity building at all levels of research, site or time of clinical decision making, and the 1Oslo University Hospital, Ullevål, The Cancer Center, greater engagement with research partners. consequent difficulty of integrating the assessment Oslo, Norway, 2University of Aberdeen, Department of Aims: This paper outlines the processes adopted to instrument into clinical practice, and not least the Public Health (P.M.F.), Aberdeen, United Kingdom, develop and sustain joint working practices, establish cumbersome completion of scores on pen and paper. 3Fondazione IRCCS National Cancer Institute of Milan, good governance and to achieve sustainable work Expert consensus has identified 10 pain dimensions, Palliative Care (Pain Therapy - Rehabilitation), Milan, streams within CECo, from its inception, and over the ranked according to importance for pain assessment in Italy, 4Bristol Haematology & Oncology Centre, following three years. palliative care: intensity, temporal pattern, treatment Department of Palliative Medicine, Bristol, United Methods: The organisational structures and and exacerbating or relieving factors, location, Kingdom, 5Norwegian University of Science and governance and monitoring systems required in this interference, quality, affect, duration, beliefs and Technology (NTNU), Pain and Palliation Research type of initiative will be presented, including reflection history. The choice of instrument will depend on the Group, Department of Cancer Research and Molecular upon the transitions in working and leadership styles location of care, adaptability to follow-up reference Medicine, Faculty of Medicine, Trondheim, Norway required during the development of the collaborative. interval, burden and the option of proxy ratings. A

sessions Results: Evidence of the challenges and strategies used selection of validated instruments will be discussed Background: Literature reviews from the EPCRC in the organisation and leadership of a collaborative with emphasis on their limitations. A CP intensity score (European Palliative Care Research Collaborative) shows will be demonstrated, in addition to reflections on captures not just pure nociception but the patient´s that a plethora of pain assessment tools are in use and processes that required adaptation. expression of pain. Non recognition of other non- that tool development is a continuous process, often not Conclusions: There are important transferrable nociceptive and therefore non-opioid sensitive adhering to accepted guidelines. The systematic work of lessons to be learnt from the CECo collaborative which components of CP expression may occur in the EPCRC is based on international, step-wise, iterative Parallel Parallel are potentially applicable to other countries and unidimensional assessment. The original Edmonton processes by clinicians, basic scientists and researchers organisations seeking to establish similar initiatives. Staging System for cancer pain assessed many other with literature reviews, expert/patient interviews and domains relating to the CP presentation, including CP data collections. mechanism, CP characteristics, cognitive function, Aims: A major EPCRC objective is to improve pain PS 01.3 opioid dose, psychological distress, opioid tolerance assessment through international consensus on and addictive behavior. The limitations of this tool and content, methods and interpretation. An ongoing Collaborating with research partners: involving its more recent versions, including the Edmonton international data collection in palliative care (PC) people affected by life-limiting illness Classification System for CP (ECS-CP) will be discussed. cancer patients, EPCRC-CSA, aims to test the second Further research necessitates international version of a computerised assessment tool, based on Froggatt K1 collaboration to establish uniformity and avoid data from a prior national study (PAT-C). 1Lancaster University, International Observatory on End confusing disparities in the approach to cancer pain Methods: PAT-C was fully computerised, primarily of Life Care, Lancaster, United Kingdom assessment and classification. assessed pain and covered the dimensions: intensity, interference, location, temporal pattern, Background: Collaboration with people affected by exacerbation/relief. 395 PC (M: 53%, age 63) and 168 life-limiting illnesses in health research is widely PS 02.2 chronic pain (CP) patients (M: 32%, age 46) were promoted within the UK. User involvement aims to recruited. The EPCRC-CSA started in Norway in Oct help ensure that research is undertaken that reflects Improving assessment and classification of 2008, has included 150 PC patients and aims to recruit user priorities and perspectives. The Cancer Experiences cancer pain - how can we improve? 1400 from 19 centres world-wide. Collaborative (CECo), is developing user involvement Results: PAT-C results showed that pain intensity and through engagement with research partners (members Knudsen A K1, Aass N2, Fainsinger R3, Caraceni A4, Klepstad interference were highly correlated (r=0.81), but their of the public and service users). P5, Jordhøy M6, Hjermstad M J7, Kaasa S1, European relationship differed in PC patients vs. CP patients, Aims: This paper outlines the processes adopted to Palliative Care Research Collaborative (EPCRC) indicating that one or both are reported differently by develop and sustain research partner work within 1NTNU, Faculty of Medicine, Dept. of Cancer Research the two groups. PC patients may find it difficult to know CECo, from its inception, and over the following three and Molecular Medicine, Trondheim, Norway, whether functional limitations are due to pain, years. 2Rikshospitalet University Hospital, Division of Cancer indicating that pain interference may be less reliable in Methods: Different processes and activities have been Medicine and Radiotherapy, Oslo, Norway, 3University this group. Psychometric analyses supported keeping adopted within CECo’s user involvement work that of Alberta, Division of Palliative Care Medicine, the dimensions conceptually distinct, although it may reflect a range of different consenting, consulting, Edmonton, Canada, 4Istituto Nazionale Dei Tumori, be possible to form a summary score. Assessment by cooperative and collaborative relationships (Tripp Palliative Care Unit, Milan, Italy, 5Trondheim University computers was well accepted. 1998). Involvement has occurred in the design and Hospital, Dept. of Anaesthesiology and Emergency Conclusion: The PAT-C analyses supported the a priori management of specific studies, and also entails Medicine, Intensive Care Unit, Trondheim, Norway, opinions of the experts, that intensity and interference oversight roles within the Collaborative’s management 6Innlandet Hospital Trust, Cancer Unit, Dept. Internal should be assessed as two dimensions. The international structure. A new initiative in the form of a Research Medicine, Gjøvik, Norway, 7Ullevål University Hospital, collaboration in PC represents notable progress for Partner Forum has been established to provide regular The Cancer Center, Oslo, Norway consensus-based research contact between the research partners and CECo researchers. One of the aims of the European Palliative Care Results: A core group of research partners has been Research Collaborative (EPCRC) is to achieve consensus established within one CECo partner university and on a classification system for cancer pain. As a first step, PS 03 OPCARE – addressing End of provides input into the design of studies across the a systematic literature review was performed in order to research collaborative. This forum is also developing its identify existing classification systems and domains / Life Issues own research programme. Other individuals have items used to classify cancer patients with pain. become involved with the other partner universities in In a systematic search in the Medline and Embase a range of roles. The work is not without its challenges databases, covering 1986-2006, the search strategy was PS 03.1 in terms of ensuring appropriate training and support based on the terms “classification” or “categorisation” and the management of expectations from all parties. or “staging” or “grading”, and “neoplasm” or “cancer”, Signs and symptoms of approaching death Conclusions: There are important benefits to CECo and “pain”. Only papers in English assessing adult and to research partners of developing sustainable user patients were included. All reports were systematically Eychmueller S1, OPCARE9 involvement across all its activities. Appropriate evaluated by two independent readers. 1Cantonal Hospital St. Gallen, Centre for Palliative Care, attention also needs to be paid to the demands that 692 hits were obtained of which 92 papers were St.Gallen, Switzerland arise when seeking to integrate user involvement into evaluated to address pain classification. research activity. Six standardised classification systems were identified. OPCARE9 is not a research project but a collaboration Funding Source: NCRI Three of them were systematically developed and for defining further fields of research. The dying phase partially validated; the Classification of Chronic Pain of especially in hospital settings has often been claimed to the International Association for the Study of Pain be “underdiagnosed”. In consequence, team conflicts,

26 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Parallel sessions

“futile treatment” and insufficient symptom control are about the natures of psychological and psychosocial measurement and research priorities. One of its foci is reported frequently. There is a need for diagnosing suffering and support addressing this in the last days of to develop collaboration on culture and end of life care. dying more accurate. life? Aim: To present a preliminary comparative analysis of Methods: 3 different methods have been used to What influences the extent and quality of the ‘call for expertise’, which is still ongoing, and analyse phenomena for the dying phase: a systematic psychological suffering in the last days? Is this different consider its use and usefulness. literature review, an internet- based search for from psychological and psychosocial suffering before Methods: A document consisting of: a call for expertise phenomena reported in fiction literature and in the onset of the last days of life? and a brief questionnaire, to identify the most internet fora, and a Delphi process among different Needs Assessment knowledgeable experts on cultural issues in end of life target groups in different countries and among What do we know about the epidemiology of care, using a snowball sampling approach. It was sent professionals and non- professionals. psychological and social suffering? by e-mail to people the research team knew, to those Results: 1) a list of 32 different phenomena of How do the needs (macro or micro) differ between the identified through the literature, to a list of European approaching death could be extracted from the Delphi different stakeholders? palliative care associations and to conferences targeted process. There is a clear difference in the rating as being How do the needs differ between contexts? at palliative care professionals covering issues on an important phenomena between professionals and How the needs of the different stakeholders are culture. non- professionals. interconnected? Results: We identified 41 ‘experts’. The questionnaire 2) “Dying” is not a Medical SubHeading (MeSH- Term), How needs can be assessed - by whom, by what has a response rate of 30%. The majority of responses a fact that not only reflects the lack of clear definitions instruments/ procedures, who should be addressed for came from the UK. There were fewer responses from for this phase of life, but also the lack of research in this it (patients, family members, staff)? the rest of Europe. We received feedback to the field in the medical world. Any literature search for this Technology: What interventions are available to questions as being too broad for an accurate reply. kind of phenomena needs to include non- medical address these kinds of suffering and what can be Through an inclusive approach an understanding is literature and even fiction. achieved by them? obtained of the ‘expertise’ that exists in this area, in 3) There is no evidence until now for having a set of How well meet the interventions the need for which disciplines it is to be found and who expresses signs and symptoms (i.e. diagnostic test) with a psychosocial and psychological support? interest in this topic. The answers to the five open reasonable accuracy for predicting the dying phase. How interventions manage to address conflicting questions show distinct issues by country. They give needs? different interpretations of the concept ‘culture’. What preconditions exist for working interventions? Conclusion: The call for expertise is a flexible PS 03.2 Quality indicators: What quality indicators can be instrument for the development of an unexplored area found? of research. Its inclusive approach allows to explore the OPCARE9: End of life decisions Methods used are: variation in interpretations of culture and identify (1) Delphi methodology among experts in the field of where the expertise can be found and what it entails, as van Zuylen L1, Raijmakers N2, van der Heide A2 palliative care from all 9 OPCARE9 countries (and it is moulded by the respondents. It is a time- 1Erasmus MC, Dept of Medical Oncology, Rotterdam, additionally Romania) consuming tool for both sides but the information it Netherlands, 2Erasmus MC, Dept of Public Health Care, (2) Systematic literature review in 5 databases generates makes it worth the effort. Rotterdam, Netherlands (MedLine, PsychInfo, PsychLit, CINAHL, CancerLit) Current results are going to be presented. The OPCARE9 project aims to identify important lacks PS 04.3 in knowledge in order to improve end-of-life care for cancer patients. One of the issues concerns end-of-life Making culture relevant to End of Life practice: decision making. To determine the international scope PS 04 PRISMA session: Culture in An overview of approaches to cultural

of end-of-life decisions first of all an informal inquiry competency sessions was performed. end of life research An end-of-life decision was defined as ‘a decision Evans N1, Pool R1, Meñaca A1, Gysels M1 involving a person who is in the last days of life that 1Centre de Recerca en Salut Internacional de Barcelona has (may have) a significant impact on the quality, PS 04.1 (CRESIB), Barcelona, Spain place and/or time of dying’. In 9 countries relevant stakeholders (e.g. physicians, nurses, and psychologists) What is culture and why is it important for Background: Attempts to provide equitable care in Parallel were asked which end-of-life decisions they consider to understanding priorities at the end of life palliative care settings for minority ethnic groups have be important. been heavily influenced by ‘cultural competency We received responses from 91 stakeholders from 7 Pool R1, Evans N1, Gysels M1 models’. The impetus for development of these models countries (Argentina, United Kingdom, Germany, 1University of Barcelona, Centre for International came from increasing evidence that minority ethnic Sweden, Switzerland, Slovenia, and the Netherlands), Health Research (CRESIB), Barcelona, Spain groups experience unequal access to palliative care and who reported in total 696 end-of-life decisions. These hold distinct end of life preferences. decisions could be ordered into 12 categories. The In discussions about the provision of adequate health Aims: Discuss definitions of ‘cultural competency’; categories ‘life-prolonging medical treatment’, ‘place of care the term “culture” is used widely, though it is give an overview of models used; evaluate the dying’, ‘symptom management’ and ‘information and defined loosely, if at all, and there is little critical appropriateness of models for palliative care settings; communication’ contain 62% of all decisions. reflection on either the diverse meanings of the term or and consider the impacts of cultural competency Important life-prolonging treatment decisions in the the assumptions that underlie its use. Culture tends to training on healthcare professionals’ practice. last days of life concerned withholding/withdrawing be equated with ethnicity and seen as both the main Methods: A systematic review of cultural issues in end cancer-directed therapy, and artificial hydration and/or causal factor behind the health behaviour of minority of life care in the UK was performed using the nutrition. The place of dying (at home or in an groups as well as the key to the appropriate delivery of databases: WoK; Cochrane Library; OVID; Cancerlit; institution) and how to control symptoms (palliative care to these groups. It is argued that end of life care ASSIA; and CINAHL. 129 documents met inclusion sedation, appropriate drugs) also involve important should be culturally sensitive, taking cultural diversity criteria; 98 were available for full assessment. decisions. Finally, deciding about the content, timing or the cultural backgrounds of patients and their Results: The results from the review of cultural and style of communication with the patient and families into account, and care providers are assumed competency are presented. Definitions of cultural relatives in the last days of life was frequently to require training in cultural competence to deal with competency ranged from narrow interpretations mentioned as an important topic. patients from diverse backgrounds. meaning increased specific cultural knowledge to So, within the international community there seems to Sensitivity to cultural difference is an essential aspect of broader interpretations including cultural awareness, be agreement about the importance and relevance of a holistic palliative care, particularly in the multi-ethnic sensitivities and skills. Cultural competency was seen as certain end-of-life decisions. Our findings give an context of many European societies, but a more precise a process and models were intended to be applicable in excellent starting point for the follow up of the project, and more critical approach to culture is required if this practice. The need for training of healthcare where gaps in knowledge concerning important end-of- is to be fully realised. This needs involve going back to professionals in cultural competency was a recurrent life decisions will be explored in a systematic literature the anthropological concept of culture as largely theme. The literature, however, revealed ambiguity review and a Delphi process, in order to identify shared unconscious conceptual models that underlie, concerning the appropriateness of cultural competency (and diverging) opinions about future research influence and structure the ways in which people think models for use in palliative care settings, concern that a challenges. and act in practical situations. This definition includes focus on cultural knowledge could lead to stereotyping, not only the norms and assumptions underlying the and a paucity of literature on the impacts of needs and the behaviour of “ethnic minority groups”, interventions. PS 03.4 but also those of palliative care and its providers Conclusions: The literature demonstrates various themselves. This enables the recognition of diversity in understandings of ‘cultural competency’, and Psychological and psychosocial support for the ostensibly uniform model of biomedical care (for ambiguity concerning its appropriateness and cancer patients in their last days of life example in the ways in which “end of life” are defined effectiveness in practice. Research is needed to clarify in different settings) thus facilitating a better fit cultural competency and its application in palliative Voltz R1, Galushko M2, Popa-Velea O2, Ostgathe C2, between provider and patient models. care settings. In addition, research is needed to OPCARE9 investigate healthcare professionals’ agency in applying 1University Hospital Cologne, Palliative Care, Köln, ‘cultural competency’ policy. Germany, 2University Hospital Cologne, Köln, Germany PS 04.2

Psychological and psychosocial support (PPS) for cancer A call for expertise for the development of a PS 04.4 patients is consistently reported in literature as an European network of experts on culture and end essential part of palliative care, able to ameliorate of life care The experience and expression of pain: the substantially their quality of life. However, little is influence of culture and ethnicity and known about the scope and utility of PPS for cancer Gysels M1, Evans N1, Menaca A1, Pool R1 implications for palliative care patients in their last days of life. 1Barcelona Centre for International Health Research, Therefore the main objective of this project is to Anthropology, Barcelona, Spain Koffman J S1 (1) define the scope and contents of PPS by expert view 1King’s College London, Palliative Care, Policy and and Background: PRISMA is a EU programme aiming to Rehabilitation, London, United Kingdom (2) evaluate the number and content of articles inform best practice and research in end of life care for published on PPS cancer patients across Europe through comparison and Theories of pain have traditionally been dominated by Research questions include: What do we know exchange of approaches and experiences in biomedicine concentrating upon its neurophysiological

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 27 Parallel sessions

aspects, both in diagnosis and treatment. In this PS 05.2 PS 06 Palliative care in the presentation I argue that a major obstacle to a more adequate conceptualisation of pain is the manner in Challenges in the palliative care of ALS/MND community: coming of age which it has been ´medicalised´, resulting in the inevitable Cartesian split between body and mind. Oliver D J1 Scientific medicine has reduced the experience of pain 1Centre for Work and Learning, University of Kent, PS 06.1 to an elaborate broadcasting system of signals rather Chatham, United Kingdom than seeing it as moulded both by the individual and Palliative care in the community: coming of age their socio-cultural context. The management of people with Amyotrophic Lateral Although pain lies at the intersection between biology Sclerosis (ALS) / motor neurone disease (MND) is Murray S1 and culture, until recently relatively little attention has changing with the increased use of ventilator support 1University of Edinburgh, General Practice - Research, been paid to understanding this relationship and how it and gastrostomy feeding. There is increasing evidence Edinburgh, United Kingdom potentially influences care and treatment. Other that these interventions improve quality of life and, in equally important issues governed by culture about the the case of ventilatory support, increase prognosis. Palliative care in the community has significantly meanings and expression of pain are now being Although these interventions may be helpful there are advanced in many countries throughout the world. discussed. I will present evidence, quantitative and increasing challenges in the discussion with patients This symposium will highlight exciting clinical, qualitative, to show that (i) not all social/cultural and families about their use. The discussion may need conceptual and research developments in different groups respond to pain in the same way; (ii) the to occur earlier in the disease progression, as there is countries in the last few years. After this introduction, perception and response to pain can be largely evidence of frontal lobe dysfunction in an appreciable we will learn of the most significant development in influenced by our cultural background; (iii) how, and number of people with ALS/MND as the disease England to make palliative care accessible to all. Then whether, people communicate their pain to health progresses. Thus discussion about future care may need from Australia we will learn of clinical and research professionals and to others, is also influenced by to be started before the patient develops severe innovations in the community. The last presentation cultural factors. swallowing or breathing problems, but while they are will illustrate from Scotland the potential of Cicely Saunders proposed the concept of ‘total pain’ able to be fully involved in the discussion. This can be a longitudinal qualitative research in the community. which includes important patient-centred concerns challenge to patients, families and professionals. Palliative medicine has achieved huge strides in the last involving psychological, social, emotional, and spiritual The interventions may be helpful initially but as the 40 years. Hospices now deliver excellent specialist dimensions, all of which are culturally patterned. ‘Total disease progression continues and the person may palliative care, but do not reach most dying patients. pain’ is inextricably tied to a sense of narrative and become more disabled - both physically and, in some Developing palliative care services in the community biography and emphasizes the importance of listening cases, mentally. Discussions about these issues should (now called Primary Palliative Care) is important to to a patient’s story in order to understand their ideally occur when the intervention is commenced so reach and serve the whole population, and to provide experience of their distress and how they want it to be that with advance care planning all involved, patient, care where many people wish. Such services can managed. A greater appreciation of how culture family and professionals, are aware of the wishes of the moreover provide care from diagnosis of a life- influences pain, and the skills required to engage in patient. As the disease progresses there may be the need threatening illness, and to people with non-malignant conversation among diverse populations to elicit their for discussion about the withdrawal of the conditions and older persons who have comparable beliefs and concerns will be discussed. intervention, with all the ethical and practical issues concerns to and in some cases even greater and more this involves. prolonged unmet needs than people with cancer. There is the need for specialist palliative care services, Primary care professionals share common values with which may be able to help in these difficult discussions, palliative care specialists - holistic, patient centered PS 05 Neurology and non-cancer in to work in a collaborative way with neurology and care, delivered in the context of families and friends,

sessions rehabilitation services so that interventions can be and are well placed, if trained and supported, to provide palliative care successfully commenced, with full discussion of their care to all. implications and with clear and agreed advanced care Given the increasing public expectation around plans. palliative care for all in need, it is important and timely PS 05.1 to prioritise and take forward research in this setting. This research should address all issues of adjusting to Parallel Parallel The wish for hastened death in neurological palliative PS 05.3 life after diagnosis, including symptom control, care. How do we approach the issues? psychological wellbeing, social aspects, and existential Psychosocial interventions in neurological concerns. This is a challenging arena, but rapid progress Voltz R1 palliative care patients and their families has been made in recent years in developing 1University Hospital Cologne, Palliative Care, Köln, conceptual models and research architectures for Germany Wasner M1 progressing descriptive and intervention studies. 1University of Munich, Interdisciplinary Center for Patients in palliative care who “want to die” represent a Palliative Medicine, Munich, Germany clinical and ethical challenge. In tumour patients, PS 06.2 about half have this wish for hastened death (WhD) at Palliative care professionals often report significantly least intermittently, about 10% strongly and lower satisfaction when caring for neurological vs. GSF - internationally relevant to facilitate persistently. Clinical experience suggests that this wish cancer patients, mainly due to higher workload, quality care in the community may be even more pressing in patients with more communication barriers and “difficult relatives”. A chronic and physically debilitating situations such as in possible explanation for this observation may be that Thomas K1 many neurological conditions. the palliative care concept of oncological patients 1National Gold Standards Framework Centre, For teams palliative care teams, these patients initiate cannot be applied unaltered to neurological patients. Brownhills, United Kingdom quite a few uneasy questions, e.g. How do we react? Overall, there are many identical stressors and needs; Could we understand a patient´s wish in specific however, neurological palliative patients also have “We can’t get it right until primary care does it right” circumstances? How does this relate to our palliative specific characteristics that pose particular challenges: “GSF is the bedrock of generalist palliative care“ care philosophy, and what effect does this discussion First, it is clear from the very beginning that there is no Most care for patients towards the end of life is have on the team? Should we wait until patients bring cure - this is the case with neurodegenerative diseases, delivered by the usual healthcare provider- often the GP this topic up, or would it be safe to start that discussion with MS and with malignant brain tumours. How does and community nursing team. Enabling primary care upfront? What do patients really mean when they this influence the concept of hope? to provide high quality end of life care is vital, and no mention this to us? How much is this wish changeable, Secondly, due to new therapy approaches, the course of national strategy will work unless this important area is and how hard should we try? the illness is often considerably prolonged, and addressed. Current research has shown that a WhD has to be seen resembles chronic illnesses. Additionally, the speech of The Gold Standards Framework (GSF) in Primary Care by the team as a quite differentiated phenomenon. many patients with ALS is affected due to the disease, is a framework to deliver a ‘gold standard’ of care for all First, the WhD may show itself in various intensities. and patients with malignant brain tumours are often patients nearing the end of their lives. It includes tools Only few patients explicitly ask for death on request or cognitively impaired and suffer personality changes. and resources for generalists to optimise the care for all assistance in dying, some patients, however, would feel What kind of psychosocial intervention is needed in patients with life-limiting conditions, in roughly the a strong WhD, but not dare to mention it, especially in this clientele? final year of life. GSF focuses on enabling and releasing a palliative care situation. Are we prepared to identify Open communication between patient, family, health the abilities of generalists, to better dovetail working those patients? Furthermore, quite a few patients see a care professionals enables individuals to discuss with specialists. WhD as a hypothetical option should the future get concerns freely. Providing significant information like Over the past 8 years GSF has successfully changed the worse. prognosis, possible side effects of the disease and also face of community palliative care provision in the UK. Second, a WhD may change over time spontaneously, information on available support is essential. Medico- It is now mainstreamed in policy as part of the NHS and may therefore also be a target for our therapeutic legal issues arise in illnesses that cause cognitive End of Life Care Strategy, endorsed by the Royal College interventions. But do those address all relevant reasons? impairment. The advice of a social worker is then of General Practitioners, NICE and others. Over 90% Symptom control is obviously important, but what needed to arrange an appropriate power of attorney or GPs hold palliative care registers and planning about fear, hopelessness, feeling of burden to family? advance directives. Carers face conflicting demands, for meetings, and over 60% using GSF more fully. Based on What would be necessary improvements in our example juggling employment with the demands of best available evidence, evaluation is integral to the palliative care inventions? caregiving. Therefore, practical help is a priority. Often work, demonstrating improved quality of care, reduced Thirdly, the wish to die and the wish to live are strong emotional responses occur, e.g. anxiety, anger, hospital admissions and deaths, more dying where they intertwined phenomena, and do not at all exclude each depression, and denial - both in patients and in their choose, better team-working and greater staff and carer other. Even a patient with the most pressing WhD may relatives. Therefore, a psychologically informed satisfaction. have a strong will to live, and it is our task to identify approach to family care with specialist interventions, GSF is extended to other settings- the specific GSF Care this. where needed, can help throughout the disease Homes Training Programme used by almost 1000 journey. nursing homes, GSF Acute Hospitals pilots, GSF in prisons, GSF for children etc. Several countries are adapting GSF for their own system with similar early success. We believe it is internationally relevant as part of the answer to facilitate quality care in the community and welcome the opportunity to support others wishing to achieve this important goal of best

28 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Parallel sessions care for all dying people- a gold standard of care for all. We consider that family caregivers may have typical ‘system’ and ‘lifeworld’. www.goldstandardsframework.nhs.uk trajectories of psychological, social and spiritual needs This presentation provides the prelude to third and www.omega.co.uk in supporting someone dying of cancer in parallel with fourth papers where a new theory and it’s application is the patient. This has implications for carer support presented which also incorporates the theoretical from diagnosis to death and bereavement. concepts explored in paper 2. PS 06.3

Palliative care in the community in Australia PS 08.3 PS 08 Palliative care in older people Mitchell G K1 A contested state in a contested space: theoretical 1University of Queensland, General Practice, Herston, - End of life care in long-term care understandings of living and dying for older Australia people in care homes facilities Community based palliative care in Australia is shaped Froggatt K1, Parker D2, Hockley J3, Brazil K4 by its geography and the nature of its health system. 1Lancaster University, International Observatory on End Australia is both highly urbanised, yet at the same time PS 08.1 of Life Care, Lancaster, United Kingdom, 2University of has extensive areas with sparse population and scarce Queensland, Brisbane, Australia, 3St Christopher’s health resources. Access to the health system is through Long term care facilities as discursive Hospice, London, United Kingdom, 4McMaster the patient´s general practitioner (GPs), who refers the environments: implications for end of life care University, Hamilton, Canada patient to relevant health professionals and services. Palliative care services vary from tertiary level specialist Parker D1 In many Western resource-rich countries, older people services to single non-professional health professionals 1University of Queensland, UQ/Blue Care Researach live and die in long-term institutional care settings. The with a special interest in palliative care. Aged care is and Practice Development Centre, School of Nursing provision of high quality end of life care for older conducted in government supported care homes with and Midwifery, Brisbane, Australia people residing in such setting is receiving increased different levels of intensity of care. attention. However, knowledge about living and dying Palliative care has been supported through a This presentation provides an overview of an in these settings remains largely under theorised, which comprehensive national program to improve quality, ethnographic study informed by the symbolic limits our understanding of how to influence the accessibility and coordination. Initiatives include interactionism perspective (Parker, 2008) to explore development of quality end of life care in the setting. development of a uniform national undergraduate the social experience of death and dying in Australian This paper argues that theory can elucidate the palliative care curriculum, improved access to palliative residential aged care facilities. Drawing on the work of experience of living and dying in care homes. We care medicines, demonstration grants to improve Gubrium & Holstein (2000,2001) the concepts of extend Stafford’s model of the nursing home as a coordination between palliative care services and discursive environments and institutional identities cultural space through the use of Habermas’s theory of community services; enhancement of rural palliative are used to illuminate the mediating role of communicative action and Gubrium’s discursive care, the development and implementation of guidelines institutions, such as residential aged care facilities, in practices to understand better the dynamics that shape for care in aged care facilities; and work on indigenous the construction of the self in society. With respect to living and dying for individuals and the wider palliative care. dying and death in these settings the study provides organisation. We propose a new conceptual model that Have these programs improved outcomes for evidence of how Australian residential aged care shows how older adults dying in care homes occupy a community palliative care? The effectiveness of palliative facilities as discursive environments provide contested state with respect to their positioning on the care in the community is contingent on the support of institutional templates for the construction of self living-dying continuum. How individuals themselves

Australia’s GPs, approximately 75% of whom conduct identity for dying residents. The discursive attribute their status as living and/or dying can be sessions palliative care. Major challenges are: 1. To identify the environments of the two residential aged care facilities contested. Care homes are also contested places, located characteristics of those who are not participating in embraced the revivalist discourse of a palliative in wider systems, which are influenced by a range of palliative care so as to improve participation rates; approach for dying residents. This revivalist discourse economic, quality and regulatory drivers. A number of 2.maximise effectiveness of the system by improving was evidenced by discursive practices within the living-dying discourses (consumer, professional and integration between specialist teams and GPs; 3. environments that acknowledged death and dying and societal) mediate the life world and wider system in a providing on-time education to ensure quality; and 4. embraced self identity, values, biography and communicative space. These discourses act as drivers Parallel improving GP skills and techniques through testing relationships between dying residents, their family and and shape older adults’ experiences of living and dying innovative interventions. staff. However, this revivalist discourse was in the care home. The proposed model has This presentation will offer examples of this work: there overshadowed by the biomedical and economic transformative potential to illuminate current and are major challenges but exciting opportunities available. discourses which were dominant in these settings and future practice in end of life developments in long-term which dictated the possible institutional templates that care settings. were available for dying residents to construct their PS 06.4 identity. Four possible templates for self construction for dying residents were proposed. These were the PS 08.4 Do family caregivers have typical trajectories of economic self reflecting the presence of an economic psychological, social and spiritual needs in discourse, the embodied and dying selves which were Translating theory into practice: Strategies for supporting someone dying of cancer?: serial created to serve the economical and biomedical transforming long term care facilities qualitative interviews with patients with lung discourses and the other constructed self for those cancer and their family carers whose resources of identity construction are limited. Brazil K1, Froggatt K2, Parker D3, Hockley J4 1McMaster University, Clinical Epidemiology and Kendall M L1, Murray S A1, Primary Palliative Care Research Biostatistics, Hamilton, Canada, 2Lancaster University, Group PS 08.2 Lancaster, United Kingdom, 3University of Queensland, 1University of Edinburgh, GP section, Edinburgh, Brisbane, Australia, 4St Christopher’s Hospice, London, United Kingdom End of life care for older people in long term United Kingdom care: a system and life world perspective Background: Typical trajectories of physical decline This paper is the final in this symposium “End of Life have been described in people with cancer, organ Hockley J M1 Care in long term care facilities: Theoretical and failure and the frail elderly. We have previously 1St Christopher’s Hospice, London, United Kingdom Practice Perspectives”. This presentation will illustrate described and mapped out characteristic patterns of how the model presented in this symposium has social, psychological and spiritual distress for people This paper reports on an action research study (Hockley transformative potential to illuminate current and with cancer from diagnosis to death. 2006) that was undertaken to develop staff knowledge future practice in end of life developments in long-term Method: We undertook a secondary analysis of serial of high quality end-of-life care for older people resident care settings. qualitative interviews with lung cancer patients and in nursing care homes [NCHs]. Working with two The conceptual model presented here offers diagnostic their carers from diagnosis to death, in which we asked independent NCHs, exploratory work confirmed and remedial direction to improve the experience of carers not only about their impressions of the needs of specific contextual and clinical issues related to end-of- dying for older people living in care homes. This model the patient, but also about their own needs life care and highlighted that dying was peripheral to can be used diagnostically to help identify the different Results: Family carers witness and may share the the care culture where the emphasis was on functional discourses present in care homes. By identifying which illness experience of the person who is dying. Although rehabilitation. In each NCH, an initiative, inductively discourses are dominant, initiatives can be tailored to they may not suffer from the patient’s physical disease, derived from discussion with staff and based on the them in order to achieve support for their their social lives may be disrupted, they may suffer exploratory phase, was devised and implemented. In implementation. This conceptual model attempts to psychological distress (such as anxiety and depression the first NCH, the initiative entailed development of identify discourses that shape individual’s experiences as they see their family member suffer), and the ‘collaborative learning groups’ (CLGs) which took place of living and dying in long-term care facilities. suffering witnessed may cause them to think about the following the death of a resident. In the second NCH, a Attention to these discourses may facilitate more meaning of and purpose of life themselves. Family group of NCH staff, managers and local GPs adapted effective ways to deliver end of life care in these carers had their own physical needs which were the Liverpool Care Pathway for the last days of life; this settings. different from the patients´, but where this impacted was then introduced through an intense education At a remedial level, we would argue that both the on their ability to care had added significance. programme and used prior to the death of a resident. lifeworld (micro) and system (macro) need to be The specific social issues were frequently different as The documentation provided a system around which considered and addressed within initiatives that seek to were the specific psychological problems but at high quality end-of-life care could be promoted. Both improve the experience of living and dying in care different points of the illness trajectory particularly at actions were evaluated. These initiatives enabled a homes. For example, in England the national End of diagnosis, deciding about treatment, getting home, greater openness towards death and dying in both Life Care programme advocates the use of various tools disease progression and death each were stressed in the NCHs. that have been developed to ensure individual’s needs same three dimensions at similar points in the illness The session presents a conceptual model for developing are identified and met. However, on their own these trajectory. practice that acknowledges the importance of both the tools are not sufficient. Using this model it is not Conclusion: The multi-dimensional experience of lifeworld of staff in their care of dying residents and enough to put ‘tools’ in place to help people manage distress suffered by patients was typically reflected in their families alongside the nursing care home system. dying. The lifeworld is of equal importance, which the suffering of their carers in the social, psychological This model, and the process of undertaking the action requires human experiences to be addressed, and existential domains, and we have mapped this out research, is discussed in relation to Habermas’s Theory encouraging ‘right action’ or greater compassionate visually. of Communicative Action - a substantive theory of care by carers or enabling residents to voice their fears

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 29 Parallel sessions

about death. The recognition of communicative the being of the person they love. Grief will increase as in palliative care and other aspects of health care. (discursive) space and the possibility that this can be family members see that a stranger emerges from that created provides another. decline - a stranger who needs unceasing care. We have to consider and appreciate the grief both in the disease as well as in the mourning that follows the PS 12 Education and Training death. At all levels of the experience, grief can be PS 09 Europal: Best Practice in disenfranchised by the shame, secrecy, and stigma that are companions of Alzheimer’s disease (cf. Kenneth PS 12.2 Palliative Care Doka). In our concepts of identity, in the professional care settings as well as in our communities, we need to The evolution of E learning in palliative care enfranchise this grief by developing attitudes and education PS 09.2 discussing strategies that can be used to support and validate all the grief throughout the course of the Becker R1 Organisation of Palliative Care in seven countries disease. We have to focus on a dementia friendly 1Severn Hospice Shropshire and Staffordshire culture. University, Faculty of Health, Shrewsbury, United Jaspers B1, Ahmed N2, Van Beek K3, Paz Ruiz S4, Woitha K5, Kingdom for the Research Group EuroPal on Best Practice in Palliative Care PS 10.2 This presentation will look at the evolution of E 1Dept. Science and Research in Palliative Medicine, learning in palliative care education and its emergence University of Bonn, Malteser Hospital Bonn/Rhein-Sieg, What is the effectiveness of bereavement support in recent years as a major educational tool. Examples of Bonn, Germany, 2Academic Unit of Supportive Care, and counselling? successful initiatives in E learning will be cited and School of Medicine and Biomedical Sciences, University discussed along with current research evaluating the of Sheffield, Sheffield, United Kingdom, 3Department of Müller M1 impact of these initiatives. The benefits and current Radiotherapy, Palliative Care , University Hospital 1University Bonn, ALPHA Rheinland, Bonn, Germany limitations of E learning will be discussed and the Gasthuisberg, Leuven, Belgium, 4World Health presentation will conclude with a speculative look at Organization Collaborating Centre for Public Health During the past decade research has been increasingly what the technological developments in this area have Programmes in Palliative Care, Barcelona, Spain, focused on the subject of grief, results concerning the to offer palliative care education in the near future. 5Radboud University Medical Centre, Department of effectiveness of bereavement counselling (BC), Reference: Becker R (2009) Online courses for nurses Anesthesiology, Pain and Palliative Care, Nijmegen, however, vary. Some theories question the effectiveness working in palliative care, European Journal of Netherlands of bereavement support and others hypothise that Palliative Care,16(2) 94-97 everything is of help as long as the relationship Aim: The 3-year EU-funded project EuroPal: Best between the bereaved and their counsellors is a good Practice in Palliative Care aims at identifying quality one. PS 12.4 indicators for the provision of palliative care. One step What is meant by „helping a grieving person“? of the research programme included the compilation of Freund´s demand to work efficiently on the target of Education in Palliative Care; the intercultural national inventories of palliative care (PC) of the „leaving behind the deceased and detaching oneself challenge participating seven countries (Belgium, France, from the feelings connected with him“, has long Germany, The Netherlands, Poland, Spain, and United overcome. Smeding R E W1 Kingdom). Also, helping does not mean perfect symptom control 1University of Liverpool, Marie Curie Palliative Care

sessions Method: Development of a questionnaire (focus group) within a certain time frame, based on the idea of a Institute, Liverpool, United Kingdom for collection of data on the state of art of the supposedly objectively defined half-life of symptoms organisation of PC using publications, grey literature such as sleeping disorders, tensions, lack of Palliative Care’s date of birth is assumed to be 1967, with (acknowledged sources), and interviews with national concentration, intense longing or dejectedness. Were the founding of St. Christopher’s. Placed within the experts and policy makers. these the goals and ambitions of BC, or the general changes taking place at the end of the sixties in Results: The topics covered in the inventory were: expectations of the bereaved themselves, it can be the western world, we see however at least two parallel Parallel Parallel 1. Health systems with regard to provision and funding justifiably stated that BC is not able to achieve this. developments: a revolutionary concept of caring for of PC, A representative, non-clinical study including 73 dying people, and secondly, radical changes taking place 2. Systems to measure PC needs of the population, individuals mourning a close relation’s death carried in education. PC moves to place the “unit of care” in the 3. Laws on PC, out by ALPHA Rheinland between 2001 and 2003 centre; education, in a similar radical shift, places the 4. National and/or regional policies on PC, found that BC caused a change, namely affecting a learning person(s) in the centre. Introducing these 5. Health plans regarding palliative care and their person’s attitude and belief system, their self-esteem parallel changes within a sociological matrix of change, implementation, and self-respect. we can see how the values and insights emerging also 6. National/regional PC associations, According to oral and handwritten statements, 60 % create a danger to enact a new kind of patriarchy today, 7. Barriers or incentives to provide or receive PC, stressed that BC enabled them to identify and, so to or, via export, a new kind of imperialism. 8. Role of volunteers in PC, organisations and training of speak, comprehend their own grief reactions (sense of PC traditionally defines itself as based on 4 pillars: volunteers, comprehensibility). 48% learned to manage their grief medicine, nursing, psychosocial and spiritual. At the 9. Place of death, (sense of manageability) and 61 % became aware of bedside and in education, it is enacted via multi- 10. Numbers and description of PC resources, how their grief reflected the meaningfulness of their disciplinarity, and multi-professionalism. Importantly, 11. Research (national/regional research plans, funding), relationship to and their love for the deceased (sense of the WHO definition ( 2002) also requires multi- 12. Education and specialisation in PC. meaningfulness). centeredness: “patient and family.” Parts of the results of the inventories were used to Consequently, BC strengthened the bereaved persons’ It will be proposed here to acknowledge the “forgotten develop a questionnaire on organisation, process and coherence and resilience. These coping resources are 5th pillar of PC”: the discipline of education. It would outcome of models of PC in the seven countries that are recognised as an individual disposition that contributes allow to harvest from professionally informed attention recommended as excellent services by experts from the to advancement and maintenance of health. to teaching and learning. This takes place constantly in respective countries. Important results of data collection PC: Between a patient and his/her family, between the are presented. representatives of the caring system on the one hand Conclusion: A careful process of agreement on PS 10.3 and the patient or his/her system, on the other. Cicely definitions and terms, including the preparation of a Saunders herself used new teaching techniques already concise glossary, is needed to facilitate even descriptive Obstructed grief following traumatic loss - a very early on, be it most probably not based in the compilation of information from different countries. possible role for ritual educational shifts, happening at the same time.... Interviews with national experts and access to grey Multi-centeredness taken seriously, at least in education, literature are key instruments for the coverage of most Speck P W1 invites multiculturalism, not only when someone from recent information. 1Kings College London, Palliative Care, Policy & another culture is cared for in a western-oriented society, Rehabilitation, London, United Kingdom but also in exporting Palliative Care via education to other cultures. In this paper I will present the case of a young woman Some examples on the educational developments for PS 10 Bereavement and Loss who gave birth to four stillborn babies (quads). The the Liverpool Care Pathway, will be used to illustrate the extent of her loss was not acknowledged by the above. professional staff involved in her care, or subsequently PS 10.1 by her husband. She was prevented from seeing the babies post delivery and from arranging a suitable Lost: Dementia and (dis)enfranchised grief funeral. Over the following six years she was unable to PS 13 Clinical decision making grieve and had to take time off work because of Metz C1 recurring mental health problems. Eventually she was around ethics – exploring the 1Kardinal König Haus, Hospiz und Palliative Care, admitted to a psychiatric unit following several Wien, Austria attempts to commit suicide. A referral was made to the difficulties unit chaplain/ grief therapist. In partnership with the Disorientation in time and place is currently a popular psychiatric team the chaplain worked to ‘unblock’ the TV adventure fiction (‘Lost’). In media reality grief process, and begin the process of healing, by PS 13.1 exploration of these topics serve as popular devising an approprite ritual which was incorporated entertainment. In the ‘real world’, however, friends and into the therapeutic task. Gradually this young woman The ethics of non-treatment decisions (NTDs) families affected by dementia are usually hidden from ceased to be a high suicide risk, began a more natural view. Grief is the constant yet hidden companion of grieving process, was discharged home and Materstvedt L J1 Alzheimer’s disease and other related dementias. Grief subsequently returned to work. This case history 1Norwegian University of Science and Technology can arise when an individual in the early stages of the illustrates the importance of health professionals not (NTNU), Department of Philosophy, Trondheim, disease encounters the symptoms fearfully and assuming they know the value of another’s loss and of Norway anticipates the loses that the disease entails. Grief will not being over-protective of the patient/client or of certainly be experienced by family members as they their own reactions to trauma. Staff must ensure that Not initiating (withholding) or discontinuing view the slow deterioration in the memory and even appropriate assessment is made of bereavement needs (withdrawing) futile treatment are both “non-

30 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Parallel sessions treatment decisions” (NTDs). A commonly accepted decisions are made on behalf of patients who lack interdependently in planning, problem solving, definition of “futile treatment” is given. The area of capacity to take those decisions for themselves. It has decision-making, and implementing and evaluating NTDs is however wider than that of futile treatment ethical implications for palliative care. Whatever team-related tasks. The team is characterized by a high since it includes situations in which treatment is decision is made must be made on the basis of the ‘best degree of co-operation and communication, and effective but is considered disproportionate. From an interests’ of the patient. The best interests judgement professional, task-centred leadership which varies from ethical point of view, the latter is not unproblematic must be based on all the relevant clinical circumstances case to case depending of the needs of the individual and some examples are provided. But nor is so-called (including benefits, harms and risks of treatments) and patient and family. The following categories distinguish futile treatment ethically unproblematic, even though whatever can be known of the patient’ wishes, feelings, effective teams: communication, cohesion, mutual it is regularly thought to be. One issue is whether futile beliefs and values. Any written statements made by the respect, goals, purpose, and leadership. treatment can ever be justified and this paper argues patient must be considered, but the decision is based To be a team, the team members need to be defined. that it can. Recently, the notion of “palliative futility” on best interests and not just on the patient’s advance This is vital for the communication and collaboration has been introduced. In this presentation, this concept statement of preferences. The decision must be based within the team, but also for the organisation served by is rejected as a misnomer and it is also shown that it on the interests of the patient only, not those of the the team. Membership defines the team’s boundaries. fails to mirror clinical reality. Other issues addressed patient’s family (contrast with the philosophy of The most common membership distinction is between are: Do physicians intend death when carrying out palliative care). This is ethically important. The law the core team and the extended team. Core members NTDs, or do they merely wish for death to come sooner enables patients (with capacity) to make a refusal of a are usually full time members governed by the team rather than later? What is the difference, if any, specific treatment in advance of loss of capacity. But the policy and managed by the team leader. Extended team between an intention and a wish? There is a practical- responsibility for deciding whether the advance refusal members are usually part-time in the team, not clinical difference between euthanasia (lethal injection is valid, and truly applicable in the circumstances is governed by team policy, and having managers outside by a doctor at the patient’s voluntary and competent given to health care professionals. This is ethically the team, with less voting rights on team decisions. request) and NTDs, yet the outcome (immediate death) difficult because the patient is enabled to make an This may give rise to tensions. may sometimes be similar. Does this factual difference advance ‘choice’ but much of the responsibility for that While efficient teamwork demands a defined team, also amount to an ethical difference? Is it, in the choice is then passed to health care professionals. There palliative care also needs to be flexible. Ideally, the team language of ethical theory, a difference that makes a are other ethical implications of Advance Care should be tailored to suit the needs of the patient and difference or are both instances simply cases of Planning/Advance Statements, e.g. patients must be family in each individual case. However, although medicalised killing albeit at different levels? adequately informed when they are asked to express flexibility is needed, loose team boundaries may lead to preferences about their treatment and care for a future drifting team members working multidisciplinary time when capacity is lost. The Mental Capacity Act is instead of interdisciplinary. PS 13.2 designed to uphold and protect the interests of the patient who lacks capacity. But major ethical problems Is palliative/terminal sedation just ´slow arise where the interests of the patient who lacks PS 14.3 euthanasia´? an alternative to euthanasia? or capacity conflict with the interests of their family, or something totally different from euthanasia? with the interests of other patients, and where pursuing Clinical supervision and reflective practice the interests of the patient lacking capacity conflicts Griffiths J1 with the important values of equity and cost Firth P H1 1University of Groningen, Groningen, Netherlands effectiveness in a publically funded health care system. 1Isabel Hospice, Family Support, Welwyn Garden City, United Kingdom Palliative/terminal sedation has been welcomed by some as an ethically and legally unproblematic Background: Increasingly organisations which offer

alternative that makes euthanasia (and physician- PS 14 Team-working & conflict palliative care are being required to set up supervision sessions assisted suicide) unnecessary. It has been criticized by systems.Government End of Life initiatives particularly others as ´slow euthanasia´ without the legal management in the UK are being asked to employ staff with a range safeguards, and which - if in effect imposed on patients of skills and competencies which can be demonstrable. who would have preferred euthanasia - deprives them There is recognition that clinical supervision, case level of a significant part of the control over the time and PS 14.1 management and reflective practice are all different but manner of dying that euthanasia offers. To assess such with similarities.Some palliative care practioners Parallel claims, some fundamental distinctions must be drawn Are teams the best way to provide palliative care? require supervision for their registration but as yet it is a between palliative sedation, terminal sedation, and relatively new concept for the nursing and medical euthanasia. The legal status of all three must be Speck P W1 professions. examined with more precision than is usually 1Kings College London, Palliative Care, Policy & Method: This presentation will examine some evidenced. The dangers associated with each of them Rehabilitation, London, United Kingdom definitions which will be explored using clinical must be specified. And the possibilities of adequate examples. It will also discuss the merits of supervision control must be assessed. Teamwork can be fulfilling or frustrating and, in many in helping people stay happy and healthy in their roles. parts of the world, expensive. When the late Dame The author will describe the setting up a clinical Cicely Saunders developed her ‘Total Pain’ model supervision system for all staff in a UK Hospice. This PS 13.3 (Clarke 1999) it became clear that such an holistic will include survey results and the planning of approach would be difficult to deliver by a single educational initiatives. The author will give examples End-of-life decision making in clinical-ethical profession. Over the past 40 years a variety of team from her own experience both in receiving regular case consultation at a university hospital approaches to care delivery have been developed across supervision and having been a clinical supervisor for 20 the palliative care world. There is an assumption that years Bosshard G1 the best quality palliative care is delivered through a Conclusions: Clinical Supervision and reflective 1Physician and Clinical Ethicist, Winterthur, Switzerland teamwork approach (A First Class Service 1998, the practice is an extremely important part of palliative NICE Guidance 2004 and Hearn & Higginson 1998). care. It helps workers stay focussed on the task and is 45% of all clinical-ethical case consultations between Poulton and West (1999) showed that team processes vital in improving the skills competencies and their 2006 and 2008 (n=67) were related to end-of-life issues. accounted for 23% of the variation between teams in wellbeing.Increasingly we are looking to provde 21% concerned withholding / withdrawing treatment at their effectiveness. Many teams find it difficult to training for supervisors but where will this come from the intensive care unit, 7% withholding / withdrawing attend to ´process´ and this can lead to frustration and and what sort of supervision is requiired treatment at the general hospital ward. 7% concerned tension. However, there is still limited research to show patients asking for assisted suicide, 3% the question of if such team approaches are the most effective way of whether or not to attempt resuscitation, and another 3% delivering care. This paper will examine some of the PS 14.4 the interpretation of an advance directive. Some specific arguments for and against team-working and the need cases are discussed. for further research into this fundamental tenet of the Conflict management But not only in terms of the subject to deal with there is palliative care philosophy. Clarke D (1999) ‘Total Pain’, a close affinity of clinical ethics to palliative care. Both disciplinary power and the body in the work of Cicely Pestinger M1 disciplines use an integral, interdisciplinary approach, Saunders 1958-1967. Social Science & Medicine 49, 727- 1University Hospital Aachen, Department of Palliative trying to reconcile of the realm of scientific medical 736. Dept of Health UK (1998) A First Class Service, Medicine, Aachen, Germany evidence, and the realm of individual values of patients Quality in the New NHS. NICE (2004) www.nice.org and caregivers. In doing so, both palliative care and Hearn and Higginson (1998) Do specialist palliative Caregivers in palliative care units underly some framing clinical ethics run counter to the organisational logic of care teams improve outcomes for cancer patients? A conditions which can make conflict management a hospital, and a university hospital in particular, where systematic review. Palliative Medicine. 12, 317-332. complicated, for example non-hierarchical decision the institutional power follows the scale of organ- Poulton and West (1999) The determinants of making in hierarchical medical settings. When specific specialisation or specialised technical effectiveness in primary health care teams. J.of conflicts between team members lead to frustration intervention. This is one explanation why both Interprofessional Care 13(1) 7-18. and loss of efficiency, counselling may be a helpful disciplines, no matter how much they might be needed antidote. Methods of conflict management provide by patients and their caregivers, are often marginalised several strategies in solving problems. These strategies within these institutions. PS 14.2 are quite similar to basic elements of communication with palliative patients like listening and the expression The interdisciplinary team of feeling. However, the experience shows, that team PS 13.4 dynamics such as the competition for ressources, social Haugen D F1, Pain and Palliation Research Group rank and position in the team do not always make it The UK mental capacity act - implications for 1Regional Centre of Excellence for Palliative Care, easy to follow the measures as advised. Therefore an Palliative Care Western Norway, Haukeland University Hospital, analysis of required competencies for team members is Bergen, Norway made referring to a theoretical model of team Randall F1 development. Related questions will be discussed from 1The Royal Bournemouth & Christchurch Hospitals The team approach is an inherent component of a systemic point of view: What are the (hidden) barriers NHS Foundation Trust, Macmillan Unit, Christchurch, palliative care and included in the 2002 WHO to become effectively? How can palliative care teams United Kingdom definition. A team is different from a group or a crew. use conflicts to initiate development processes? Which An interdisciplinary team is an identified collective in useful function can conflicts have in palliative care The UK Mental Capacity Act 2005 governs how which members share common team goals and work teams? Inherent assumptions with respect to dealing

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 31 Parallel sessions

with conflicts will be derived. Herein, the basic spiritual need. Gordon and Mitchell (2004) have a far more complicated and usually longer process for premises are to gather information and to identify the proposed a competency model for assessment of getting it better, and a rather pessimistic prognosis (e.g. type of conflict. The main instruments to resolve are spiritual care, while Daaleman et al (2008) in cancer pain staging system). There is no common negotiation and mediation. Finally, the role of the examining the understanding of clinicians and other definition of what is complex, but complexity is not a counsellor will be explicated. health care workers have recognised the highly fluid phenomena limited to Palliative Care but has parallels nature of the interaction between spiritual care-giver in physical, biological and social systems (Munday et al and patient.Insensitive and/or inadequate approaches 2003). Interactions and evolution of phenomena are to assessment or provision can prove harmful and not predictable, non- linear, and may end in chaos in PS 15 Palliative care peer-reviewed highlight the need for careful exploration with complex systems (the “butterfly effect” has been awareness of the dangers of acting on assumptions. known for years). Any individual may be an example journals: the editors tell all Minimising risk of harm requires a more than basic for such a complex system and any reductionism in level of communication skills and a willingness to terms of standardized assessment or drug regimen reflect on one’s own beliefs, values and ability to work seems to be hopelessly naive. PS 15.2 with difference. In this way the provision of spiritual “Complicated” is different from complex in terms of care may prove to be more a blessing than a curse. stability and predictability of interactions. Journal of Palliative Medicine NICE Guidance (2004) www.nice.org Multidimensional assessments and interventions are Koffman J et al (2008) “I know he controls cancer”: The therefore used for creating a better understanding of von Gunten C F1 meanings of religion among Black Caribbean and the involved factors and for getting better results in the 1Institute for Palliative Medicine at San Diego Hospice, White British patients with advanced cancer. Social treatment of complex symptoms. A good example is the San Diego, United States Science & Medicine 67, 780-789. diagnosis and treatment of chronic pain which is based Pargament K (1997) The Psychology of Religion and on solid knowledge from different fields in science. The The Journal of Palliative Medicine serves the Coping Guilford Press, London. Gordon & interconnections within the pain regulatory system are interdisciplinary field of palliative care. The first Mitchell(2004) A competency model for the assessment best described as being ‘complicated’, but we are still far volume was published in 1988. David Weissman, MD and delivery of spiritual care. Palliative Medicine 18(7), away from providing an understanding for its possibly was the founding editor. Manuscripts are selected with 646-651. ‘complex’ character. the understanding that the vast majority of readers are Daaleman (2008) An exploratory study of spiritual care In a case based approach the challenges for using a clinicians. Opportunities to publish at various stages of at the end of life. Annals of Family Medicine 6(5), 406- reductionistic concept for dealing with complex career and levels of evidence exist within the structure 411. systems will be highlighted. There might be a truth of the journal. While initially serving authors and beyond the concept of ‘evidence’. readers in North America, both readership and authorship have now become global. PS 16.2 PS 17.2 Spirituality in palliative care: a clinician´s PS 15.4 perspective Opioid induced hyperalgesia and paradoxical pain Palliative care peer-reviewed journals: The Garcia-Baquero Merino M T1 editors tell all 1Servicio Madrileño de Salud, Coordinadora Regional Sjøgren P1 de Cuidados Paliativos, Madrid, Spain 1Unit of Palliative Medicne, Anaesthesia, Copenhagen, Hanks G1 Denmark 1

sessions University of Bristol, Department of Palliative Spirituality in the dying is a difficult area for many: the Medicine, Bristol, United Kingdom spirit is a dimension so rich in shades, with so many Opioid therapy is associated with a number of well- and so varied facets, so vivid in its manifestations, that known adverse effects as cognitive impairment, bowel The aim of this session is to provide an opportunity for it makes it necessary to approach its study with the dysfunction, dryness of the mouth and urinary the editors of some leading peer-reviewed journals to ingenuity of someone who is about to enter a retention, but also with development of tolerance and provide information about the scope of their journal completely new and unknown world.Palliative Care opioid-induced hyperalgesia (OIH). OIH is broadly Parallel Parallel and details of their working practices. The editors will clinicians must always be aware that the main objective defined as a state of nociceptive sensitization caused by describe what happens to manuscripts which are of their professional work is to alleviate suffering. This exposure to opioids. Decreased effectiveness of the submitted, how many people read the paper and who will mean acknowledging and addressing pain in all its opioid therapy raises the difficult question, whether it they are, how decisions are made about which papers dimensions and striving to achieve a degree of is a sign of tolerance development, OIH, progression of are sent for external review, how referees are selected for competence to deal with it at some level. tissue injury or a combination of these factors. OIH was each paper and who they are, what happens to referees The spiritual dimension manifests itself through primarily described in patients with advanced cancer reports and who makes the final decision about questions such as “Why me?”, “What happens when I receiving high doses of opioids for prolonged periods publication. Information about referees, who they are die?”, “Is there meaning in life?” and is often ignored (1). However, recent studies indicate that OIH are much and where they are based, becoming a referee and by clinicians fearful of making things worse. In other more prevalent and it has been described in former maintaining a place on the referees database. occasions their training and skills don’t equip them to addicts in methadone maintenance (2), during The editors will also present information about the be able to suspect ‘total pain’, let alone deal with it. perioperative exposure to opioids (3) and in chronic number of manuscripts received, the proportion The dying are left on their own to identify, develop or non-cancer patients treated with opioids (4). The accepted and rejected, the time taken to process each reaffirm sources of spiritual energy and in -so doing- mechanisms behind development of OIH are not manuscript, from receipt to final acceptance or foster hope. Many are too vulnerable to do so without known, but recently a study in chronic pain patients rejection, and the time from final acceptance to help. Acceptance of self - despite regrets for past events treated with opioids demonstrated a less efficient publication. In order to give an indication of the type of or behaviours; granting and accepting forgiveness; activity in the pain inhibiting diffuse noxious papers published each editor will indicate the top 10 finding opportunity to express guilt or blame; finding inhibitory control system (5). cited papers from his journal over the past year and five the strength to address the present: Why me?, low self- 1) Sjøgren P, Jonsson T, Jensen NH, et al. Hyperalgesia years. Other topics to be covered will be impact factors esteem, change in body image, change in role within and myoclonus in terminal cancer patients treated with and how they are calculated, impact factors and family; feelings of isolation and anger; and dealing with continuous intravenous morphine. Pain 55: 93-97, academic careers, the number of palliative care peer- the future: fear of dying, leaving loved ones, finishing 1993. reviewed journals and whether there are too many and business….Are painful but relevant matters in a life 2) Doverty M, White JM, Somogyi AA, et al. what the future holds: peer-reviewed journals in 10 coming to its end. All may need our help to come to the Hyperalgesic responses in methadone maintenace years time. surface and be dealt with in an assertive manner by the patients. Pain 90: 91-96, 2001. patient, their families and ourselves. 3) Guignard B, Bossard AE, Coste C, et al. Acute opioid A clinician is certainly more confident when dealing tolerance: intraoperative remifentanil increases with signs, symptoms, clinical manifestations and postoperative pain and morphine requirement. PS 16 Spirituality - an issue for treatments, etc than with more abstract and difficult to Anesthesiology 93: 409-417, 2000. define issues. 4) Chu LF, Clark DJ, Angst MS. Opioid tolerance and palliative care This piece of work aims to present the topic in a way hyperalgesia in chronic pain patients after one month that might empower all healthcare professionals to help of oral morphine therapy: a preliminary prospective patients negotiate difficult issues. study. J Pain 7: 43-48, 2006. PS 16.1 5) Ram KC, Eisenberg E, Haddad M, et al. Oral opioid use alters DNIC but not cold pain perception in patients Spiritual care in palliative care - blessing or with chronic pain - new perspective of opioid-induced curse? PS 17 Complexity in Symptom hyperalgesia. Pain 139: 431-438, 2008.

Speck P W1 Management 1Kings College London, Palliative Care, Policy & PS 17.4 Rehabilitation, London, United Kingdom PS 17.1 Symptom management for patients with end NICE Guidance for Supportive Care (UK 2004) and peer stage renal disease and palliative care patients reviewed papers in journals reflect a growing What is the difference between complex and with renal impairment requirement for spiritual care to be assessed and complicated symptom management? provided within palliative care, as well as other health Chambers E J1 care settings. There is also a growing evidence base to Eychmueller S1 1North Bristol Trust (Southmead), Palliative Medicine, indicate that spiritual and existential issues are 1Cantonal Hospital St. Gallen, Centre for Palliative Care, Bristol, United Kingdom important for patients, whether or not expressed St.Gallen, Switzerland through a formalised religion. The importance of Renal impairment (RI) is common among palliative religious belief and practice has also been demonstrated Palliative Care professionals are often confronted with care patients who may develop acute renal failure, a to have a role in the coping strategies of people facing complex symptoms, even suffering from different gradual decline in function or have End Stage Kidney life-threatening disease (Koffman 2008, Pargament origin, and find any symptom management as being Disease (ESKD) all of which situations will impact on 1997). Many attempts have been made to create complicated and difficult. If symptoms are complex, drug handling and toxicity and hence our management assessment tools or systematise the discernment of the concept of “total” (pain) may be used which signals of their symptoms.

32 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Parallel sessions

Many drugs and their metabolites are excreted through PS 18.3 be discussed, with reference to EAPC guidance on the kidney; accumulation of the drug or its active palliative nurse education. metabolite (the most important function affected) will Potential cost savings of greater use of home and contribute to an already narrow therapeutic window of hospIce-based end of life care in England benefit versus toxicity, though other aspects of drug PS 19.2 handling are also affected. McBride T1, Archontakis F2, Hatziandreou E3, Nichols A4, Caution is needed when using guidelines for drugs in Daly A2 Translation and validation of the esas RI as recommendations are usually based on single dose 1National Audit Office, Health VfM, London, United (edmonton symptom assessment scale) in studies based on creatinine clearance and not the Kingdom, 2RAND Europe, Modelling, Cambridge, Spanish chronic dosing needed in palliative care or estimated United Kingdom, 3RAND Europe, Health and GFRs used by many clinicians and which are least Healthcare, Cambridge, United Kingdom, 4National Carvajal A1 accurate at the extremes of life or body habitus. Audit Office, Economics and Statistics Practice Area, 1Clinica Universidad de NAvarra, Palliative Care, 50% of ESKD patients experience moderate or severe London, United Kingdom Pamplona, Spain pain in addition to a high non pain symptom burden; (mean of 9 symptoms in one study of elderly dialysis Aim: RAND EUROPE was commissioned by, and The aim of this communication is to introduce the population). The incidence of the most common worked with the National Audit Office (NAO) to process of translation and validation of the Spanish symptoms are dry skin, fatigue, pruritus, anorexia and estimate the financial consequences of decreasing the version of the ESAS, in addition to further studies sleep disturbance is 72, 70, 55, 49 and 42% respectively reliance on acute hospital care during the last year of generated by them. The translation process was with almost all patients experiencing a dry mouth. life by expanding home and hospice-based care. This obtained using a reverse translation method by Management of pain, with special reference to strong commissioned study is part of a broader Value for bilingual translators, a method recommended by opioids will be discussed. Careful assessment, Money study that the NAO is undertaking into end-of- experts when cross-cultural studies are undertaken. explanation, individual titration with normal release life care in England. After obtaining a Spanish version of the ESAS, it was preparations at an increased dosing interval of drugs Methods: We developed an economic model (a found that screening by means of numerical scales for with inactive metabolites; close monitoring for relief Markov model), which uses the latest disease statistics, anxiety and depression and also fatigue, needed and toxicity and the use of adjuvants all contribute to health expenditures and utilisation data available. We clarification of the terms chosen. Two prospective improved pain control. ran the model to first estimate the current cost (to the studies were then designed to study this. Management of other symptoms, in ESKD, will depend NHS) of health care provision of end-of-life care for After this preliminary process, the validation study was on the symptom, stage of disease, its severity and other patients who are in their last year of their life and suffer carried out. Internal consistency was measured by symptoms that may be worsened by side effects from from cancer or organ failure (pulmonary and heart means of Cronbach´s Alpha, obtaining a coefficient of newly introduced drugs or improved by drugs which failure). Then, we used the model to simulate various 0.75. The test-retest was performed by Spearman’s may also help more than one symptom. Thus the scenarios of decreasing reliance and usage (over this correlation obtaining a rate from 0.65 to 0.94. Factor clinician needs to know the range of possible period) of acute care by those patients and estimate the analysis obtained satisfactory results. Concurrent interventions and choose the one that is most effective economic implications to the health system. The validity of the ESAS with the Rotterdam Symptom in the particular clinical situation implicit assumption is that the number of unplanned Check List obtained a correlation from 0.55 to 0.76. emergency admissions and the length of stay in the Discriminant validity was measured in different hospital could be reduced by providing end of life care functional states with the Kruskal-Wallis test and a in the community and in hospice. We estimate the days significant difference (p<0.005) was found between PS 18 Palliative care as a public of acute care which could be avoided and the amount groups. The responsiveness was measured using the of resources which could be made available for Wilcoxon test for the ESAS on days 0 and 2, where a

health issue redeployment. significant difference (p<0.05) was found for the sessions Results: Results suggest the potential of substantial majority of symptoms. amount of resources that could be released by The next step was to design an implementation process PS 18.1 decreasing reliance on acute care in England. Due to in the Oncology department of our University Hospital. parliamentary privilege results can not be disclosed An Electronic ESAS database was available on the Why palliative care is a public health issue prior to the publication of the full National Audit Office centre’s computer network. After three years of Report to Parliament in November 2008. systematic symptom evaluation we carried out an audit Parallel Clark D1 Conclusion: This study contributes to the scant process between nurses and physicians as to the 1University of Lancaster, Department of Preventive economic literature on the economics of palliative care. systematic use of the instrument. At this time we are Medicine and Public Health, Lancaster, United It demonstrates the benefits of increasing the reach of finalising analysis of this audit. Kingdom palliative care services; it shows the potential of Further studies will be a retrospective study to analyse releasing substantial amounts of resources which could the data for 400 patients registered on the ESAS In recent years there has been considerable interest in be used to better meet patients wishes of avoiding being database. A new prospective study of the prognostic promoting the idea that palliative care is a public cared for in an acute setting as they approach the end of value of the ESAS and the development of ESAS health issue. Indeed it is often claimed that palliative life. guidelines through an international Delphi process. care should be integrated into public health systems and become part of mainstream healthcare provision. But this is only one aspect of ‘public health’, more PS 19.3 broadly defined. In this session I shall explore the PS 19 Palliative Nursing different meanings of ‘public health’ – from Palliative Nursing: An African Viewpoint epidemiology to citizen participation – and assess their relevance to palliative and end of life care. I shall warn PS 19.1 Downing J1 against too narrow a definition of ‘public health’ when 1African Palliative Care Association, Kampala, Uganda considering end of life issues. Such a perspective could What do we mean by palliative nursing? fail to capture the wider potentialities that exist in Despite the significant need for palliative care in Africa communities, in ‘social capital’ and in the many other Walshe C1 to address its high burden of disease (especially cancer stakeholders with a concern about how society cares for 1The University of Manchester, The School of Nursing, and HIV/AIDS), palliative care remains a new discipline its most sick and vulnerable members. Midwifery and Social Work, Manchester, United and therefore in some countries it is reasonably well Kingdom established and almost nonexistent in others. Provision of palliative care across Africa is largely spearheaded by PS 18.2 Nurses and nursing as a profession are keen to nurses given their availability at all level of care. Nurses highlight their contribution to the care of patients in therefore play a pivotal role in palliative care The process and preliminary outcomes of a the palliative phase of illness, and to explore and development in the region and this unique position European Parliament report on palliative care explain what differentiates nursing care from care provides them opportunities to shape and guide the given by other healthcare professionals. This development of palliative care in Africa. Martin-Moreno J M1 presentation highlights aspects of these issues, Nurses are therefore at the forefront of the integration 1University of Valencia, Department of Preventive focusing on the care nurses give in the patients own of palliative care into all levels of care so that everyone Medicine and Public Health, Valencia, Spain home, and on the interface between the care given by in need of palliative care has access to it - although nurses who specialise in the provision of palliative reaching this aim is still a long way off. Despite this, Following the publication of a final independent report care, and those who do not. however, nurses all over Africa are emphasising the for the European Parliament (EP), entitled Palliative In the UK, as elsewhere, there is a real drive for care to need for palliative care programmes that are affordable, care in the European Union, it could be of interest to be delivered at home, and where possible and desired, culturally appropriate and available to both children reflect upon the process and the outcomes we observe for patients to die at home. Nursing care is seen as and adults, with the proviso that as palliative care nearly a year after its official dissemination. The report important in achieving these goals. Research exploring service provision is extended, the quality of the care arises from the EP´s desire to assess palliative care from the roles of generalist and specialist palliative care offered is maintained. This presentation will provide a a public health perspective, although many key nurses providing home care will be reviewed and brief overview of the key aspects of the nurse’s role in stakeholders in the palliative care field also contributed discussed. The different perspectives of the nurses palliative care development before outlining the to its elaboration, including the EAPC, a number of themselves and the patients and family carers for challenges they face in this role and ways in which palliative care experts, national palliative care whom they care will be debated. Research exploring these challenges have been addressed across Africa, associations, and national health authorities. The the way that generalist and specialist nurses work emphasising the need to embrace the public health challenge was to transform the solid research evidence together will also be presented to assess how such approach to palliative care in Africa. gathered into a range of operational policy options for inter-nurse relationships impact on palliative care at MEPs, using a broad public health-based approach home. which sees palliative care as the last and vital link in the Conclusions will be drawn from the evidence community healthcare chain. Although the European presented to illuminate what palliative nursing care at Parliament has not yet considered the findings home means to nurses and patients, and to explore formally, we believe that the document still represents a how to provide high quality nursing care at home. The powerful tool for advocacy and a source of operative implications of this for the role of home care nurses, information for policy-makers. the theoretical development of palliative care nursing, and the way that nurses are prepared for practice will

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 33 Parallel sessions

PS 19.4 PS 20.2 WHO International Classification of Function, Disability and Health provides a useful framework for Palliative Care Nursing: an Australian reflection How will the current classification work classifying aspects of PF and two dimensions has been influence assessment and management in found to be of specific relevance for palliative cancer O’Connor M1 clinical daily care in the cancer disease trajectory patients; self care and mobility. Physical activity level 1Palliaive Care Research Team, Monash University, and pattern (which may be measured with an activity School of Nursing & Midwifery, Melbourne, Australia Radbruch L1, Trottenberg P1, European Palliative Care monitor) is closely related to PF and is another Research Collaborative (EPCRC) important aspect to include in the assessment. PF is an Care of the dying has been part of the Australian 1RWTH Aachen, Aachen, Germany important part of quality of life in patients with healthcare system since the early days of our advanced cancer. However, it is yet an open question as colonisation. The religious orders, who came to Accepted current definitions of cachexia: use weight to which aspects of PF and what outcome measures are Australia to establish hospitals among other activities, loss (5% in 6 months) or Body Mass Index (< 18.5) for the most valid as functional end-points in palliative saw care of the dying as central to their work. Large diagnosis, but with these definitions a lot of cachexia care. traditional hospices were developed alongside the seems to be missed. This often leads to late diagnosis of hospitals and have remained a core inpatient service to cancer-related cachexia, when weight loss is evident. this day. In the last 30 years or so, alongside However, for far advanced and severe cachexia PS 20.4 developments in medical technology, more active care treatment is often futile. Nutritional therapy is often systems for those facing the end of life have emerged, not effective with catabolic metabolism, and a review of Diagnosing and treating cachexia-related particularly in home-based care. the evidence base leaves few options for effective and suffering of patients and family members with Palliative care services have taken on of care of the tolerable drug treatment. advanced cancer whole person (not just the clinical course of the disease Diagnosis of cachexia in earlier stages as well as or their physical care) and emphasise the centrality of identification of patients at risk for developing cachexia Strasser F1, Blum D1, Baracos V2, Oberholzer R1, Radbruch the person themselves being involved in the decision- is needed. Initially cachexia may lead to loss of muscle L3, Linder S1, Fearon K4, European Palliative Care Research making about care. Palliative care expertise is now mass, but body weight may still be normal. More Collaborative widely available in many settings - at home, in acute specifically, obese patients often may have lost a lot of 1Oncological Palliative Medicine, Cantonal Hospital St. hospitals, in aged care settings and specialist in-patient muscle mass before cachexia is diagnosed, and early Gallen, Oncology, Dept. Internal Medicine and palliative care units, sometimes still called hospices. identification could lead to prophylactic and Palliative Care Center, St.Gallen, Switzerland, However, palliative care is still finding its place within therapeutic approaches preventing cachexia. 2University of Alberta, Department of Agricultural, Food healthcare systems; and there are many different However, this requires matching effective treatment and Nutritional Sciences and Department of Oncology, models and approaches to the delivery of palliative care approaches with the classification system. The new Edmonton, Alberta, Canada, 3RWTH Aachen University evident across the country. This paper addresses the classification system and effective treatment regimens Hospital, Department of Palliative Medicine, Aachen, contemporary requirements to utilize both primary have to be processed into clinical guidelines. Germany, 4Clinical and Surgical Sciences, School of health and health promotion principles and policies to Implementation of these guidelines in clinical practice Clinical Sciences and Community Health, The disseminate the expertise of palliative care as widely as is not self-fulfilling, and requires specific care and University of Edinburgh, Royal Infirmary, Edinburgh, possible. dedicated resources. For clinical practice, pathways may United Kingdom be useful, including screening steps for early identification of patients who are at high risk of Suffering from cachexia in advanced cancer patients developing cachexia or are in early stages of weight loss, may be underestimated: It encompasses its psychosocial PS 20 EPCRC – Cancer cachexia in as well as classification and differential diagnosis, and consequences (eating-related distress [ERD], patients

sessions from there to treatment algorithms and outcome & family), cachexia-related fatigue, depression, the palliative care context control. Audit or other quality assurance measures can dyspnea, early satiety or anorexia. On the contrary, be used to monitor the implementation process. suffering (e.g., pain, vomiting, depression, Feeding the classification work into the guideline constipation) can be a cause - not a consequence - of PS 20.1 development process, the new classification may seem cachexia, these symptoms can be conceptualized as to complicate matters at first, but ultimately will help to Secondary Nutrition Impact Symptoms (S-NIS). Parallel Parallel Current concepts of classification and genetic provide a differentiated therapeutic approach for many ERD, a “negative emotional experience in consequence markers of cancer cachexia patients with cancer-related cachexia who until now are of change in eating habits”, is related to the perception not treated adequately. of decreased muscle mass, physical fatigue or weight Tan B H L1, Blum D2, Strasser F2, Skorpen F3, Fearon K C H1, loss and often exacerbated by family pressure. In the European Palliative Care Research Collaborative (EPCRC) EPCRC “cachexia definition, diagnosis and 1University of Edinburgh, Clinical and Surgical Sciences PS 20.3 classification Delphi process” the experts agreed (Surgery), Edinburgh, United Kingdom, 2Cantonal substantially, that the psychosocial impact of cachexia Hospital, Oncology and Palliative Care Center, St. Is assessment of physical function a surrogate of should be assessed (e.g., “have you experienced feelings Gallen, Switzerland, 3Norwegian University of Science muscle strength and finally patient´s quality of of pressure, guilt or relational distress related to WL?”). and Technology (NTNU), Department of Cancer life? To diagnose cachexia-related suffering EPCRC is Research and Molecular Medicine, Trondheim, Norway developing a staging system for cancer cachexia in Stene G B1, Kaasa S2, Blum D3, Trottenberg P4, Fearon K C5, the Palliative Cancer Care context [PCC-C]. It will Cancer cachexia is a multi-factorial syndrome that Helbostad J L6, representing the European Palliative Care include not only all relevant elements of a practice- encompasses a spectrum from early weight loss (pre- Research Collaboration (EPCRC) guiding assessment tool (energy & protein storage, cachexia) to a state of severe incapacity incompatible 1The Norwegian University of Science and intake [incl. S-NIS], catabolic drive [inflammation, with life. There is currently no ‘all inclusive’ definition Techonology, Department of neuroscience/Department tumor dynamics], muscle & physical function), but also that encompasses the entire spectrum of cachexia. A of cancer research and molecular biology, Trondheim, an estimate of the individual impact of cachexia. The multi-dimensional classification of the cachetic state Norway, 2Norwegian University of Science and definition of late, irreversible cachexia, but also of early may be more useful in terms of clinical outcomes. Key Technology (NTNU), Department of cancer research or pre-cachexia, may guide clinical practice. defining features of the syndrome such as weight loss, and molecular biology, Trondheim, Norway, 3Cantonal To perform effective interventions for cachexia- systemic inflammation, decreased nutritional intake Hospital, Department of Oncology & Palliative Care, related suffering, standard Palliative Cancer Care and low fat-free mass index may provide a possible St.Gallen, Switzerland, 4RWTH Aachen University, Dept. assessments (symptom load, emotional and existential framework for classification. of Palliative Medicine, Aachen, Germany, 5University of distress, information status, cooping patterns, life goals The molecular mechanisms of cancer cachexia include: Edinburgh/ Royal Infirmary of Edinburgh, Clinical and and priorities, family interactions) and basic i) host- tumour cell interaction leading to an initiation Surgical Sciences (Surgery), Edinburgh, United interventions (pharmacological, educational, of host inflammatory response, Kingdom, 6Norwegian University of Science and counseling [two-sided Calman-Gap]) need to be ii) hypertrophy/atrophy pathways that govern muscle- Technology (NTNU), Department of Neuroscience, addressed. Then cachexia-staging driven specific wasting, Trondheim, Norway interventions tackling defined goals are provided by iii) adipose turnover pathways that regulate lipolysis, teams, EPCRC is developing guidelines for cachexia and Physical function (PF) deteriorates in most advanced management in the PCC-C. iv) activation/deactivation of neurohormonal pathways cancer patients as the disease progresses. Decline may controlling appetite. be even more pronounced in patients with cachexia The wealth of known polymorphisms in genes involved and is associated with muscle wasting, fatigue and in the above mechanisms suggest their exploitable reduced activity level. PF is a multifaceted construct PS 21 EPCRC - Depression in potential as biomarkers of inter-individual that might be assessed by a variety of methods targeting predictability of developing cachexia. To illustrate this, different aspects of PF. In order to develop feasible and palliative care - challenges and new polymorphisms in pro and anti-inflammatory cytokine valid assessments, consensus on which aspects of PF genes have been associated with accelerated weight loss that is relevant in advanced cancer patients is essential. knowledge in patients with gastro-intestinal cancers in recently Different instruments, tests and methods give different published articles. information about patients’ function in everyday life. The European Palliative Care Research Collaborative PF is typically assessed by self-report instruments like PS 21.2 (EPCRC) is committed towards developing symptom the physical dimension of quality of life questionnaires. assessment and classification for cancer cachexia (WP Such instruments see PF as a single dimension Conceptualisation by professionals of depression 2.3) as well as identifying genetic markers of cancer although it includes many of aspects of functioning. In in palliative care Findings from the EPCRC- cachexia (WP 1.2). cancer cachexia, measures like muscle strength may projects reflect muscle wasting and provide information about the muscular aspects of PF. Additional tests are required Wasteson E1, Loge J H2, The European Palliative Care to get a balanced picture of PF, including objective Research Collaborative (EPCRC) measures of functional capacity, performance and every 1Division of Psychology, Department of Social Sciences, day life activity. A better understanding of the Midsweden University, Campus Östersund, Sweden component parts of PF is needed to develop assessment and, Faculty of Medicine, Norwegian University of tools that can be used to assess patients from very low Science and Technology, Department of Cancer to high functioning and to measure change through Research and Molecular Medicine, Trondheim, Norway, disease progression and following interventions. The 2Rikshospitalet University Hospital, National Resource

34 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Parallel sessions

Centre for Studies of Long-term Effects after Cancer, PS 22 Advocacy, a key activity for movement in the NGO sector. Advocacy was structured Department of Clinical Cancer Research, Oslo, Norway around the elements of the WHO triangle (education, the development of hospice and access to medication, service development and national Background: The diagnosis of Major depression strategy). Two consensus meetings with relevant within palliative care clinic and research is complicated palliative care stakeholders (Ministry of Health, college of doctors and by factors such as variations and lack of consensus on nurses, university rectors, media) were organised in the assessment and classification of depression. Another is late 90s and as a result palliative care was recognised in the overlap between depressive symptoms and PS 22.1 2000 as a medical sub-specialty with a national unitary symptoms of disease/treatment. Therefore, experts on curriculum. Over 200 doctors have graduated the 18 depression were asked to evaluate symptoms and items Developing and implementing an advocacy months training and been awarded the palliative care of potential relevance for the diagnostic criteria. strategy: The global perspective diploma since then. Advocacy for changing legislation Methods: This study is part of The European Palliative was another major task. Romania being in a transition Care Research Collaborative (EPCRC), which is working Baxter S1 period was helpful as legislation was adjusted to comply towards common methods for assessment and 1Canadian Hospice Palliative Care Association, Ottawa, with European Union requirements. Palliative care classification of depression as well as for pain and Canada provisions were included in the law concerning cachexia. As part of the EPCRC, an expert panel was patients rights in 2001 and hospital law in 2003. In established. Seven qualified researchers from Japan, The purpose of this session is to highlight the 2005 in the frame contract that governs the financing Canada, the United Kingdom, Austria, Italy and Norway importance of global level advocacy to tackle the of the health system in Romania, provision for participated. The panel included psychiatrists, barriers to hospice and palliative care service delivery at financing palliative care in-patient units were included. physicians and a clinical psychologist, all with long all levels. In addition, the session will look at the Change of opioid legislation was a lengthy process experience in Palliative care practice/research and necessary components for the development and involving the governmental sector, NGOs and related areas such as oncology and psychiatry. The implementation of an effective advocacy strategy at any international experts. The challenging task continued expert group was presented with symptoms and items level. with the process of the implementation of the law. on depression, retrieved from assessment methods or The Worldwide Palliative Care Alliance advocacy group Over 3500 doctors and pharmacists have been trained classifications systems collected in a systematic is a globally represented group who advocate for change in two years in up-to-date pain management and opioid literature review. The relevance for the diagnostic to tackle barriers to hospice and palliative care at all prescribing. The new law is now a model in the region criteria of each symptom was then determined. In levels and increase access to pain and symptom and the process was copied in the Republic of Moldova. addition, the experts grouped items in accordance with management. In addition, the group works to increase 2007 was the year when the service providers from these symptoms. The Delphi method was applied. the advocacy capacity of hospice and palliative care NGOs and the public sector joined into a coalition. In Results: Depressed mood, anhedonia, feelings of organisations at the national level. 2008, a national awareness campaign was designed and worthlessness and recurrent thoughts of death were Key barriers to the development of hospice and run with minimal success as proved by the population considered the most relevant criteria for establishing a palliative care were highlighted in the Korea declaration surveys done pre and post campaign. But as a result the diagnosis of Major depression. Supplementary on palliative care in 2005 and since then the group has Ministry of Health signed the partnership with Hospice symptoms such as hopelessness were appraised as aimed to influence key global institutions, promote Casa Sperantei to develop the National Plan for important. In contrast, significant changes in weight or palliative care at relevant fora, develop advocacy Palliative Care. At the local level palliative care was appetite and fatigue were evaluated as less relevant. partnerships and allies and develop advocacy resources introduced in the undergraduate curricula for the Other symptoms were proposed by individual experts to tackle these obstacles. medical and nursing students. and examined by the panel. This session will look at the vital components of an advocacy strategy, the successes and challenges of

advocacy at the global level and the importance of sessions PS 21.3 global advocacy for the improved provision of care for PS 23 Global funding: an important patients with life-limiting illnesses, their families and Conceptualisation by professionals of depression carers. issue for Hospice and Palliative Care in palliative care: Findings from the EPCRC- projects (WP 3.2) PS 22.2 PS 23.1 Parallel Rayner L J H1, Hotopf M2, Higginson I J1 1Kings College London, Palliative Care, Policy and Advocacy for hospice and palliative care in Funding hospice and palliative care Rehabilitation, London, United Kingdom, 2Institute of Africa: A regional perspective internationally: the funder’s perspective Psychiatry, Psychological Medicine, London, United Kingdom Mwangi-Powell F1 Callaway M1 1African Palliative Care Association, Kampala, Uganda 1Open Society Institute, International Palliative Care Background: In palliative care the diagnosis of Initiative, New York, United States depression is difficult because of problems Palliative care in Africa is a relatively new concept. differentiating normal and disordered distress. Although the first hospice program in Africa began way The aim of the session is to review the current funding Moreover, the somatic symptoms of depression can back in the late 1970’s in Zimbabwe, such services have environment for hospice and palliative care and focus mimic those of advanced illness, making it difficult not been available in many parts of Africa. The need for on the experience of the Open Society Institute as one todistinguish between depression symptoms and palliative care in Africa is enormous as a result of the of the major funders of hospice and palliative care physical disease. huge disease burden coupled with lack of resources in internationally. Purpose: The EPCRC is developing a clinical guideline so many parts of the region. This session will explore the findings from the review for the management of depression in palliative care. An Advocacy is recognized as a vital component in of funding for hospice and palliative care around the expert group was constituted to address management improving access to palliative care and in particular world by the International Observatory on End of Life issues, and as part of this they were asked to identify opioid medications in Africa. Promoting the availability Care commissioned by the Open Society Institute. The clinical challenges in the conceptualisation of of palliative care for all in need; encouraging aim of the study was to identify national and depression in palliative care. governments across Africa to support affordable and international foundations and agencies that provide Method: The 27 experts were from different countries, appropriate palliative care and to have it incorporated funding for hospice and palliative care activities in a wide range of disciplines (palliative care, psychology, into the whole spectrum of existing health care developing countries. psychiatry and general practice) and settings (home, services; as well as the promotion of the availability of In addition, the specific experience of the Open Society hospital, hospice). A number had undertaken research essential palliative care medicines (especially opioids) Institute’s International Palliative Care Initiative as one into detecting and treating depression in palliative care. for all in need, are some of the African Palliative Care of the major international funders of hospice and They identified challenges and commented upon Association’s advocacy strategic objectives. palliative care will be considered. The priorities of the clinical questions relating to conceptualisation of Three innovative workshops for improving access to Open Society Institute will be highlighted and the depression in palliative care. Responses were discussed essential medications have been delivered by the successes and challenges of international funding during conference calls and circulated until there was African Palliative Care Association involving 18 partnerships for hospice and palliative care will be no further feedback using a modified Delphi method. countries throughout Africa. The aims of the explored. Results: There was agreement that somatic symptoms workshops were to identify the barriers to palliative care Attendees will develop a greater understanding of the are less useful in making a diagnosis in palliative care. and accessible opioid medications, to improve funding environment for hospice and palliative care In distinguishing depression from natural sadness, the participants’ knowledge of policy changes to make internationally and learn more about the experience of experts emphasised three symptoms - anhedonia, opioids available and to support the development of international funding partnerships from the hopelessness and suicidal ideation. Mood was tangible action plans to facilitate change. perspective of a key global funder. considered more useful than function in assessing Following the advocacy workshops in the regions, there response. The utility of formal diagnoses was debated. has been significant movement on drug availability in Several argued that the detection of cases of depressive particular, and improved access to palliative care in PS 23.2 disorder according to diagnostic criteria may be less general, in East, West and Southern Africa. important than detection of depressive symptoms Advocacy at the regional level is playing a great role in The Shepherd’s Hospice and help the Hospices: remediable to treatment. improving access to palliative care in Africa, despite the Expanding health care in Sierra Leone with the Conclusions: Conceptual confusion impedes many challenges. UK government management of depression. Three mood related symptoms may be most useful in its detection. It may Madiye G1 be useful to focus on treating depression symptoms. PS 22.3 1The Shepherd’s Hospice, Freetown, Sierra Leone Cross-sectional studies are needed to determine the symptoms that best characterise depression in palliative Advocacy success in Romania: A national and Opportunities for European hospice and palliative care care. local perspective organisations to access funding for projects with partners in the developing world continue to present Mosoiu D1 themselves. These opportunities and funding sources 1Romanian National Association for Palliative Care, are often unavailable to hospice and palliative care Brasov, Romania services around the world without the support of European partners. Palliative care in Romania started in 1992 as a The aim of this session will be to highlight the

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 35 Parallel sessions

potential for joint working across continents and how pathophysiological cause (e.g. breakthrough pain) and Phrenic nerve to access funds through worldwide partnerships, 3. side effects or toxicity of opioids (e.g. psychiatric side Brachial plexus working towards the vision to achieve access to good effects, opioid induced pain, opioid incompatibility). Intercostal nerves quality care for all those who need it, wherever they are. Modern cancer pain therapy and palliative care is able Intrathecal and epidural neurolysis The session will look at the process of identifying to treat the majority of difficult cancer pain syndromes Pituitary alcohol injection opportunities, successful application and successful. Beyond opioids the use of coanalgetic Neurolytic blocks of symphatetic axis; cervicothoracic implementation and the challenges and benefits in adjuvant medication and its differentiation is growing. (Stellate) ganglia undertaking these projects. The focus will be on a The better understanding of the pathophysiology of thoracic ganglia project between hospice and palliative care pain and the mechanisms of opioid therapy results in splancnic nerves organisations in the UK and Sierra Leone funded by the more and more differentiated therapy options. celiac plexus UK ’s Department for International Development. Despite the fact, that the progress in cancer pain lumbar ganglia Attendees will learn how partnerships between therapy is remarkable, there remains a group of patients hypogastric plexus organisations in different continents can result in which need complex and interdisciplinary pain ganglion impar accessing funding that would otherwise have been therapy. But also in this situation, the use of All of these neurolytic blocks have certain unavailable for hospice and palliative care services interventional pain therapy is absolutely seldom complications and they should be performed always working alone. The benefit to both partners will also be necessary and should be the last option. under imaging and with a close follow up. In this considered as well as the important contribution lecture where,how and why these neurolytic blocks funding partnerships can have on the development of should be used will be discussed. hospice and palliative care worldwide. PS 24.2 References: 1. S. Erdine; Interventional treatment of Continuous spinal analgesia: A no-go or a good cancer pain; European Journal of Cancer, vol 3, no PS 23.3 option? 3,pp;97-106,2005 2. Radiographic Imaging for Regional Anesthesia and Accessing funding from the Global Fund to fight Kress H G1 Pain Management PP Raj, L.Lou, S.Erdine, PS Staats, SD AIDS, TB and Malaria for hospice and palliative 1Medical University / AKH Wien, Dept. of Special Waldman Churchill Livingstone, 2003 care services Anaesthesia and Pain Therapy, Vienna, Austria

Morris C M1 What to do when systemic multiple drug treatment 1Help the Hospices, International, London, United fails to provide sufficient pain control in palliative care? Kingdom Such refractory pain (2 - 5 % of patients with cancer- related pain) not adequately managed by systemic The purpose of this session is to empower, inform and medications is considered a good indication for support attendees to access funding from the Global continuous intrathecal (IT) analgesia. Patients with Fund to fight AIDS, Tuberculosis and Malaria. neuropathic or mixed pain often become refractory to Palliative care is a vital part of the care continuum for systemic medications, or intolerant of adverse effects. HIV and AIDS but unfortunately is often neglected by IT analgesia, where drugs are delivered into the policy makers and funders. The AIDS pandemic has cerebrospinal fluid and act directly at the CNS, was increased the need for palliative care and yet various shown to provide improved quality of life and pain barriers continue to hinder the development of hospice relief, at lower doses and with fewer adverse effects. At

sessions and palliative care in resource-constrained settings. One present, morphine and hydromorphone are the most of the most prominent is lack of access to funding. often used IT analgesics, sometimes combined with the The Global Fund to fight AIDS, Tuberculosis and co-analgesics clonidine or bupivacaine. However, the Malaria is one of the key international funders that development of tolerance or opioid-induced tackles these three disease groups and many bilateral hyperalgesia, the occurrence of severe adverse effects and multi-lateral agencies direct their funds through including suppression of the hypothalamic-pituitary Parallel Parallel this funder to create harmonized and coordinated axis and potential respiratory depression, often limit funding mechanisms and programmes. To date, the the IT use of opioids. Global Fund has committed US$ 11.3 billion in 136 Recently, ziconotide (Prialt®), a novel non-opioid IT countries to support interventions against all three analgesic was licensed in US and in Europe for severe diseases. Unfortunately, despite the large sums of chronic pain including cancer-related pains. Ziconotide money available there is mixed reports of the is a reversible N-type voltage-sensitive calcium channel experience of hospice and palliative care services on the blocker and so far is the only agent that has been ground in resource-constrained settings accessing the specifically developed for IT use with pain as the funds. primary indication. Efficacy and safety have been The session will highlight the experience of hospice demonstrated by randomized, controlled and long- and palliative care services worldwide in accessing term open-label trials. The unique pharmacological ‘Global Fund to fight AIDS, Tuberculosis and Malaria’ properties of this biological drug lacking development funds and look at the key elements which have enabled of tolerance, physical dependence or respiratory funding to reach hospice and palliative care services. depression led to a revision of the polyanalgesic Practical advice and support will be given on engaging concept and its current recommendation as a first line with Global Fund processes and maximizing the drug (together with morphine and hydromorphone) opportunities to access funding. In addition, the for IT analgesia. challenges and issues for hospice and palliative care In this presentation, the patients that may benefit from services that have resulted from this funding stream IT analgesia will be described, taking into account the will be considered. diagnosis, life expectancy, the underlying physiology Data has been gathered from an online survey, semi- and the history of their pain including opioid structured interviews and a desk review of literature. refractoriness. This project is funded by the Open Society Institute.

PS 24.3

PS 24 Interventional pain therapy – Neurolytic procedures; why, when and how

A contradiction in Palliative Care? Erdine S1 1Medical Faculty of Istanbul, Department of Algology, Istanbul, Turkey PS 24.1 Although more limited than before,neurolytic blocks ‚Difficult to treat’ cancer pain still have a certain role in the treatment of intractable cancer pain. Neurolysis is the prolonged destruction of Strohscheer I1 axons or cell bodies of the somatic or sympathetic 1Private Practice, Graz, Austria nerves by means of chemical agents such as alcohol and phenol or the application of thermocoagulation, cryo By using the WHO pain ladder between 70 and 90% of and laser. all patients with cancer pain can be treated very easy These techniques should be applied only by physicians and successful. The remaining patients are a task for with experience as a part of a multi-modal therapy palliative care physicians or special pain therapists. In program in very carefully selected patients after detailed some patients the cancer pain seems to be refractory to assessment. Selection criteria for neurolytic blocks are therapy. Due to the progress regarding oncological limited life expectancy,severe persistent pain not therapies, the life expectancy of cancer patients is responding to conservative therapieslocalized somatic growing, often complicated by complex pain pain. syndromes and other burden symptoms. To apply nerve blocks; the pain must be well The term ‘difficult cancer pain’ is not well defined. characterized, well localized, somatic or visceral in There could be three areas of ‘difficult to treat’ cancer origin, not compromising a component of a pain pain identified: syndrome of multifocal aches or pain. The selection of 1. complex chronic situations with an underlying definitive neurolytic procedure is guided by the results pathophysiological cause (bone pain, visceral pain and of prognostic blocks done with local anesthetics. neuropathic pain); The neurolytic blocks which may be used are; 2. complex episodic pain with or without a Gasserian ganglion and branches

36 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Free communication sessions

Free communication sessions

FC 01 Pain Therapy 38 FC 02 Dyspnoea and insomnia 39 FC 03 Gastrointestinal Symptoms and Cachexia 40 FC 04 Assessment and Measurement Tools 41 FC 05 Education 42 FC 06 Committed to People 43 FC 07 End of Life Care 44 FC 08 Ethics in Palliative care 45 FC 09 Psychology and Communication 46 FC 10 Organisation of Services 47 FC 11 Policy 49 FC 12 Research Methodology 50 FC 13 Children 51

FC 14 Non-Cancer 52 sessions Free communication Free

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 37 Free communication sessions

FC 01 Pain Therapy (DB) study (Archimedes CP043). Patients who found an FC 01.4 effective FPNS dose during open-label titration continued to a DB phase (N=83) and treated 10 episodes Fentanyl pectin nasal spray (FPNS) with PecSys® FC 01.1 of BTCP with either the effective dose (7) or placebo (100, 200, 400, 800 μg): Pharmacokinetics and (3). Pain intensity (PI) was measured using an 11-point relative bioavailability compared with oral An international multicentre validation study of scale, pain relief using a 5-point scale; both measured at transmucosal fentanyl citrate (OTFC; 200 μg) a pain classification system for advanced cancer 5, 10, 15, 30, 45 and 60 min. Use of rescue medications patients was recorded. Subject acceptability assessments were Watling M1, Fisher T2, Knight A2, Smith A3 made at 30 and 60 min post-dose. 1Archimedes Pharma Ltd., Green Park, United Fainsinger R L1, Nekolaichuk C1, Lawlor P2, Hagen N3, Results: Only 6% (lack of efficacy) and 5% (adverse Kingdom, 2Archimedes Development Limited, Berkowitz M4, Fisch M5, Galloway L3, Kaye G6, Landman events) of patients failed to successfully titrate; 91% of Nottingham, United Kingdom, 3Evicom, London, W7, Spruyt O8, Zhukovsky D5, Bruera E5 randomised patients completed the study. A total of 659 United Kingdom 1University of Alberta, Edmonton, Canada, 2Our Lady’s BTCP episodes were analysed (FPNS N=459; placebo Hospice and St. James Hospital, Dublin, Ireland, N=200). 33% of FPNS treated episodes showed onset of Aims: To compare the pharmacokinetic profiles of 3University of Calgary, Calgary, Canada, 4Tel Hashomer PI improvement at 5 min (P<0.05), 61% at 10 min and fentanyl pectin nasal spray (FPNS) 100, 200, 400, and Hospice, Tel Aviv, Israel, 5M.D. Anderson Cancer Center, 73% at 15 min (both P<0.0001) vs placebo. By 30 min, 800 μg doses and assess relative bioavailability with oral Houston, United States, 6South Auckland Hospice, 60% of episodes had clinically relevant pain relief transmucosal fentanyl citrate (OTFC) 200 μg. Auckland, New Zealand, 7Middlemore Hospital, (≥33% fall in PI; P<0.0001 vs placebo). Only 9.4% of Background: Compared with conventional oral Auckland, New Zealand, 8Peter MacCallum Cancer episodes required rescue medication. Patients were delivery, the nasal route offers the potential to enhance Centre, Melbourne, Australia “satisfied” or “very satisfied” with the convenience fentanyl delivery and better match the time course of (70%) and ease of use (68%) of FPNS; 87% of patients breakthrough cancer pain (BTCP) where a rapid and Introduction: There is no universally accepted system elected to continue treatment post-study. predictable onset of action is required. FPNS is a new to accurately predict the complexity of cancer pain Conclusion: FPNS provided a relatively rapid onset of nasal formulation that forms a gel on the nasal mucosa management. The Edmonton Classification System for analgesia in BTCP and was well accepted by patients. to optimise fentanyl absorption in a controlled manner. Cancer Pain (ECS-CP) was developed from the original Sponsored by Archimedes Development Ltd. Methods: This Phase I, single-dose study (Archimedes Edmonton Staging System for Cancer Pain (ESS) (1989) CP042) was conducted in 17 healthy adult volunteers and the revised ESS (rESS) (2005). An international treated with naltrexone hydrochloride to block multicentre trial to strengthen the generalizability of FC 01.3 centrally mediated opioid effects. Subjects were dosed the ECS-CP as a standardized pain classification system on 5 occasions, separated by a ≥3-day washout period, in advanced cancer has been completed. The primary Comparison of intranasal fentanyl spray (INFS) with 4 FPNS doses (100, 200, 400, and 800 μg) and objective of the study was to assess predictive validity of with oral transmucosal fentanyl citrate (OTFC) OTFC (200 μg). A multidose nasal drug delivery system, the ECS-CP in a diverse international sample. We for the treatment of breakthrough pain in using 2 FPNS strengths (100 μg/100 μL and 400 μg/100 hypothesized that patients with less problematic pain cancer patients: An open-label randomised, μL), was used to deliver 1-2 sprays to achieve desired syndromes would require a shorter time to achieve balanced crossover trial dose. Fentanyl venous plasma concentrations were stable pain control, require less complicated analgesic measured before and up to 48 hours post-dose. Dose regimens, be more responsive to opioid therapy and use Mercadante S1, Radbruch L2, Davies A3, Popper L4, Camba proportionality, safety and tolerability of FPNS were lower opioid doses than patients with more complex M5 examined across the dose range. pain syndromes. 1Casa di Cura ad Alta Specialità - La Maddalena, Results: Median Tmax values for FPNS were 15 to 20 Methods: A total of 1100 patients were recruited from Dipartimento Oncologico, Palermo, Italy, min post-dose (vs 90 min for OTFC) and were dose 11 palliative care sites located in Canada, USA, Ireland, 2Universitätsklinikum Aachen, Klinik für independent. Cmax values were 2.3-fold higher for Israel, Australia and New Zealand (100 per site). A Palliativmedizin, Aachen, Germany, 3The Royal FPNS 200 μg compared with OTFC 200 μg. The dose- palliative care specialist completed the ECS-CP for each Marsden Hospital, Sutton, United Kingdom, 4Nycomed, normalised mean relative bioavailability of FPNS to referred cancer patient. Additional information, Roskilde, Denmark, 5Ctra. de San Pedro de Leixa, OTFC for each dose ranged between 111% and 180% for including daily patient pain ratings, daily number of Unidad de Dolor, Servicio de Anestesiología, A Coruña, AUC∞ and AUCt. Dose proportionality for FPNS Cmax breakthrough pain doses, types of adjuvant pain Spain across the range was confirmed. Drug absorption based treatments and opioid consumption was recorded until on AUC∞ also appeared to increase in a dose- the study endpoint (i.e. stable pain control, discharge, Aim: Breakthrough pain (BTP) is often intense, has a proportional manner. death). characteristically fast onset and short duration, with Conclusions: Across the dose range, Cmax and AUC Results: 944/1100 pts had a pain syndrome (86%). most episodes resolving within 60 min, or less. Oral increased in a dose-proportional manner. The FPNS Nociceptive 67%, Neuropathic 27%; Incident pain 49%; morphine, often used to treat BTP, has onset of action pharmacokinetic profile appears to better match the Psychological distress 44%; Addiction 11%; Cognition of ≥30 min and duration of effect of 3-4 hours. In characteristic patterns of BTCP compared with OTFC. normal/impaired/unresponsive 69/21/8%. There were addition, oral transmucosal fentanyl citrate (OTFC) is FPNS was generally well tolerated. significant differences in the ECS-CP between sites. 51% currently indicated to treat BTP. The intranasal fentanyl Sponsored by Archimedes Development Ltd. achieved stable pain control. Analysis of predictive spray (INFS) is a non-invasive formulation designed to outcomes is pending. provide fast onset of action and short duration of effect Conclusion: An internationally recognized cancer that matches the BTP episode. The trial reported was FC 01.5 pain classification system would enable clinicians to designed to compare directly the efficacy of INFS with sessions better manage cancer pain and allocate resources. The that of OTFC for relief of BTP among in-/outpatients Tolerability and safety of intranasal fentanyl ECS-CP could play a significant future role in with cancer. spray (INFS) for treatment of breakthrough pain evaluating, treating and reporting research results in Methods: This was a multi-national, multi-centre in patients with cancer: results of a 10-month the assessment and management of cancer pain. crossover trial involving 115 patients receiving chronic open-label extension study Free communication Free opioid treatment equivalent to 60-500 mg oral morphine/day or to 25-200μg/hour transdermal Oronska A1, Nolte T2, Kaasa S3, Colberg T4, Kress H G5 FC 01.2 fentanyl and experiencing ≥3 BTP episodes/week and 1Dolnoslaskie Centrum Onkologii, Poradnia Medycyny £4 /day. The efficacy of INFS titrated to an effective dose Paliatywnej, Wroclaw, Poland, 2Schmerz- und Onset of action, consistency and acceptability of of 50, 100, or 200 μg fentanyl was compared with that Palliativzentrum Wiesbaden, Wiesbaden, Germany, 3St fentanyl pectin nasal spray (FPNS) with PecSys® of OTFC titrated to an effective dose of 200, 400, 600, Olavs Hospital, Seksjon Lindrende in the treatment of breakthrough cancer pain 800, 1200, or 1600 μg fentanyl, to treat six BTP Behandling/Kreftavdelingen, Trondheim, Norway, (BTCP) episodes. The primary efficacy measurement was time 4Nycomed, Research and Development, Roskilde, to onset of meaningful pain relief, as judged by the Denmark, 5Medical University / AKH Wien, Dept. of Taylor D R1, Weinstein S M2, Burton A W3, Leung A4, individual patient, recorded by stopwatch. Pain Special Anaesthesia and Pain Therapy, Wien, Austria Ladner T5, Portenoy R K6, Fentanyl Nasal Spray Study 043 intensity difference scores (PID) at 10 and 30 min Investigators Group (PID10, PID30) for the two agents, sum of PIDs between Aim: To establish long-term tolerability and safety of 1Georgia Center for Cancer Pain Management & 0 and 15, 0 and 60 min (SPID0-15, SPID0-60), general treatment with intranasal fentanyl spray (INFS) doses of Palliative Medicine, Marietta, United States, 2Pain impression (GI) score after 60 min, ease of 50, 100, and 200 μg for breakthrough pain (BTP) in Medicine and Palliative Care, Huntsman Cancer administration and treatment preference, and AEs were patients with cancer. Institute, University of Utah, Salt Lake City, United also recorded. Methods: This was a randomised, double-blind, States, 3The University of Texas M.D. Anderson Cancer Results: The study is complete and data are being placebo-controlled, crossover trial with 120 adult in- Center, Houston, United States, 4UC San Diego, San analysed. Data will be presented comparing the time to /outpatients receiving stable, chronic opioid therapy Diego VA Healthcare System, Department of onset of meaningful pain relief provided by INFS vs. and experiencing ≥3 BTP episodes per week and £4 per Anesthesiology, San Diego, United States, 5Ladner OTFC, in terms of the proportion of patients day. Patients were titrated to INFS doses of 50, 100, or Family Practice, Las Vegas, United States, 6Beth Israel experiencing a faster onset of meaningful pain relief for 200 μg, which were then used to treat (in a randomised, Medical Center, Neurology and Anesthesiology, New each drug. double blinded sequence) 6 of 8 BTP episodes (£4 per York, United States Conclusions: This trial was the first to investigate the day), and placebo for 1 BTP episode each of episodes 1- exact time of the onset of meaningful pain relief with 4 and 5-8, respectively. Patients then entered an open- Aim: To evaluate onset, consistency and acceptability INFS and OFTC and measure any difference between label treatment phase and given bottles delivering their of analgesia produced by a new nasal formulation of the two. effective dose of INFS sufficient for approximately one fentanyl (fentanyl pectin nasal spray [FPNS]) for month of use. Tolerability was monitored for 10 treatment of breakthrough cancer pain (BTCP). months after inclusion of the last patient in the trial. Background: The pharmacokinetics of FPNS indicate Results: Of 120 enrolled patients, 111 (ITT) entered that it should have a relatively rapid onset of analgesia. and 110 completed the efficacy phase, and 108 entered Most BTCP episodes have a time course inconsistent the extension study. Mean pain intensity difference at with oral rescue medication; FPNS should provide more 10 minutes (PID10) after dosing with INFS was twice as rapid onset of pain relief and potential for greater high (2.36) as placebo (1.10, P < 0.0001). In all 99 patient acceptability. patients (82.5%) experienced AEs: 38 (31.9%) in the Methods: Patients (N=114) experiencing 1–4 BTCP titration, 22 (19.8%) in the efficacy, and 83 (76.9%) in episodes/day while taking ≥60 mg/day of oral extension open label phase. A total of 16 patients had morphine (or equivalent) for cancer pain were entered AEs probably /possibly related to INFS treatment: 7 into a randomised, placebo-controlled, double-blind (5.9%), 6 (5.4%), and 5 (4.6%), respectively, during the

38 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Free communication sessions three trial phases. Unrelated malignant neoplasm analysis. The mean breathlessness before home oxygen evaluated the role of nebulised fentanyl citrate as an progression was the most frequent severe AE (41 was 5.3 (SD 2.5; median 5; range 0-10). There were no adjuvant for the palliation of dyspnea in end-of-life care patients; 38.0%), SAE (44 patients; 40.7%), and the significant differences overall at one or two weeks cancer patients. most frequent reason for withdrawal (44 patients; (p=0.28) nor for any diagnostic sub-groups. One Methods: 20 end-of-life care cancer inpatients with 40.7%). During the extension study, 47 patients hundred and fifty people (of 413) had more than a 20% dyspnea refractory to systemic opioids inhaled one dose (43.5%) discontinued due to AEs. Altogether, 15 improvement in mean dyspnoea scores. In multi-factor of fentanyl citrate 100 mcg. Dyspnea was assessed at patients completed the 10-month extension study. analysis, neither the underlying diagnosis causing baseline and 15 minutes after fentanyl administration Conclusions: INFS at doses of 50-200 μg was effective breathlessness nor demographic factors predicted using visual analogue scale of dyspnea (VAS) reported in relieving BTP and shown to be safe and well tolerated responders at one week. by patient and caregivers. Changes in respiratory rate both locally and systemically during an extended open- Discussion: Oxygen prescribed on the basis of (RR) were also noted. Statistical analysis was performed label treatment period. breathlessness alone across a large population with SigmaStat software. The Kolmogorov-Smirnov test Source of funding: This study was sponsored by predominantly with cancer does not improve was applied to test normality of the data and differences Nycomed, Denmark. breathlessness for the majority of people. Prospective among the groups were assessed by Kruskal-Wallis One- randomised trials in people with cancer and non- Way ANOVA followed by Dunn’s Test. A p value < 0.05 cancer are needed in order to determine whether was considered significant. FC 01.6 oxygen can reduce the progression of breathlessness Results: 19 (95%) patients reported improvement in compared to a control arm. the subjective feeling of less air hunger after treatment. Are pain and depression interdependent in Dyspnea was improved as measured by a decrease in cancer: A longitudinal study VAS of more than 20% in 17 (85%) patients. Total VAS FC 02.2 scores and RR were significantly decreased after Laird B J A1, Scott A C1, Todd A M H1, Colvin L A1, Fallon M fentanyl inhalation (p < 0.001 compared to baseline). In T1, Edinburgh Translational Research in Pain Group Palliative oxygen versus medical air for relief of 16 (80%) patients, a slight sedation and low levels of 1University of Edinburgh, Edinburgh, United Kingdom dyspnea: Results of an international, multi-site, anxiety were perceived after fentanyl treatment. No randomized controlled trial major adverse reactions were detected. Aims: Pain and depression are highly prevalent Conclusion: Our preliminary data disclosed that symptoms in cancer patients. Epidemiological studies Abernethy A P1, Mcdonald C2, Frith P3, Clark K4, Herndon J nebulised fentanyl improved patients´ perception of have shown that pain and depression often co-exist and E1, Marcello J1, Woods D5, Young I6, Bull J H7, Wilcock A8, breathing. This low-cost and accessible treatment may thus the relationship between these symptoms is of Booth S9, Kenny B3, Wheeler J L1, Fazekas B3, Crockett A10, offer considerable relief of dyspnea and its use may be interest. Studies have shown a statistically significant Currow D C3 advantageous in terminally ill patients with refractory association between pain and depression and it has 1Duke University Medical Center, North Carolina, dyspnea. been suggested that these symptoms may be inter- United States, 2Austin Health, Melbourne, Australia, dependent. Although associations exist, there are no 3Flinders University, Adelaide, Australia, 4University of published studies that examine the relationship Sydney, Sydney, Australia, 5Tasmania Statewide FC 02.4 between these symptoms. The aim of this study is to Palliative Care Service, Hobart, Australia, 6Sydney examine the relationship between cancer pain and Cancer Centre, Sydney, Australia, 7Four Seasons Hospice Multi-site open label dose ranging study to depression. & Palliative Care, North Carolina, United States, determine the minimum effective dose of Methods: 60 patients with advanced cancer and cancer 8Nottingham University Hospital, London, United sustained release morphine (SRM) for reducing induced bone pain were assessed as part of this study. Kingdom, 9Cambridge University, London, United refractory dyspnoea ACTRN012606000269538 All patients had assessments of mood (Hospital Anxiety Kingdom, 10University of Adelaide, Adelaide, Australia and Depression Scale) and pain (Brief Pain Inventory) Currow D C1, Kenny B1, Mcdonald C2, Clark K3, Abernethy at study baseline. Patients then received a therapeutic Background: Although the survival benefit of oxygen A P4 intervention (radiotherapy + optimisation of analgesia). therapy for severely hypoxemic COPD patients 1Flinders University, Adelaide, Australia, 2Austin Health, Further assessments of mood and pain were undertaken (PaO2≤55 mmHg) is well-established, its symptomatic Melbourne, Australia, 3University of Sydney, Sydney, four weeks from study baseline. No patients had effectiveness for patients with intractable dyspnea at Australia, 4Duke University Medical Center, North commenced antidepressant medication (in the four life’s end is unclear. Carolina, United States weeks prior to study entry) or had started Aim: To compare oxygen with medical air for relief of antidepressants during the study period. palliative refractory dyspnoea. Introduction: Previous randomised placebo- Results: Full statistical analysis of study results is Methods: This double-blind RCT recruited from 9 sites controlled trials have identified that SRM offers awaited. Preliminary results show an improvement in in Australia, the USA, and Britain. Participants received clinically significant symptomatic benefit for refractory pain following the therapeutic intervention. The blinded oxygen or medical air at 2 litres/minute, >15 dyspnoea. At the time of the study the lowest dose median total BPI score pre- and post- intervention was hours/day for 7 days. Primary outcome was available was 20mg / 24 hours. The aim of this study is 49 (range 32-88) and 13 (range 0-52) respectively. The breathlessness on a 0-10 numerical rating scale (NRS) to define the lowest effective dose of SRM for reducing median total HADS score pre- and post- intervention measured twice daily; quality of life (QOL; McGill QOL dyspnoea (Stage I) and report on its long term net was 13 (range 2-22) and 9 (range 1-18) respectively. In Questionnaire) was secondary. Longitudinal repeated clinical benefits (Stage II). patients who had a 30% or more reduction in their BPI measures mixed models with unstructured covariance Methods: An open labelled dose ranging study was score (total score) there was a statistically significant matrices were used to assess effects of time, performed in three teaching hospitals across Australia. reduction in HADS score (p<0.05). intervention, and their interaction. Responders were Stage I people received 10mg of SRM each morning for sessions Conclusions: This is the first study that examines the individuals with >1 point NRS improvement; predictors one week. If there was clinical benefit (>10% reduction natural evolution of anxiety and depression in patients of response were explored. in dyspnoea on average over the last three days of the with pain who have pain treated actively, whilst no Results: Participants (n=239) were: mean age, 73 (SD week), 10mg SRM was prescribed long-term (Stage II). If anti- depressive intervention is administered. Results 10); 62% male; 64% COPD; mean PaO2, 77 (SD 12). no clinical benefit, and no unacceptable side effects, support the theory that the active treatment of cancer Neither gas proved superior in relieving the sensation dose was increased to 20mg daily and the algorithm communication Free pain results in an improvement in anxiety and of dyspnea (p=0.456) or improving QOL (p=0.281). repeated. The maximum dose used was 30mg / 24 hrs. depression. Dyspnea and QOL improved over the study period in Unacceptable side effects lead to study withdrawal. both arms (p<0.0001 for each outcome). Significant People on Stage II were followed until death or predictors of morning response were: oxygen use (OR cessation of morphine. 1.86, p=0.0344), and high baseline breathlessness (OR Results: To date, a total of 48 participants have FC 02 Dyspnoea and insomnia 0.20, p=0.0003). Blinded responders were more likely to completed stage I. Of these, 19 derived clinical benefit want to continue treatment than non-responders (51% at 10mg/24 hrs, 5 at 20mg/24 hrs, and 3 at 30mg/24 vs 39%; p=0.0753); 56% of those with NRS response hrs. Four participants withdrew at 10mg /24 hrs FC 02.1 reported symptomatic improvement. because of unacceptable side effects, 6 at 20mg/24 hrs, Conclusions: Overall, palliative oxygen conferred no and 3 at 30 mg/24hrs. Other than morphine side Does palliative home oxygen improve dyspnoea? additional benefit over medical air for relieving effects, 5 had no benefit on 30mg, 1 patient died, 1 A consecutive cohort study dyspnea or improving QOL in this study population. participant withdrew. For stage II, a total of more than People with more severe breathlessness may derive nine patient/years of data have been collected. In this Currow D C1, Agar M1, Smith J2, Abernethy A P3 more benefit from palliative oxygen. phase, further dose escalations have not been seen, and 1Flinders University, Palliative & Supportive Services, Implications for practice: Use of palliative oxygen once established on dose, people have not withdrawn Adelaide, Australia, 2Silver Chain Nursing Association, for the symptomatic management of dyspnea in mildly because of lack of effect or side effects. Overall, 27 of 48 Perth, Australia, 3Duke University Medical Center, hypoxemic people is not supported by this adequately- people (56 %) had a net clinical benefit sufficient to Department of Medicine, North Carolina, United States powered RCT. Selected patients benefit from the continue opioids for their refractory dyspnoea. intervention. Discussion: This study suggests that even low doses of Introduction: Palliative oxygen for refractory SRM provide long term benefit and it is reasonable to dyspnoea is frequently prescribed, even when the start with doses as low as 10mg daily, titrating up to criteria for long-term home oxygen (based on survival, FC 02.3 30mg daily slowly if there is lack of response and rather than the symptomatic relief of breathlessness) tolerable side effects. are not met. Little is known about how palliative home Effect of nebulised fentanyl in patients with oxygen affects symptomatic breathlessness. refractory dyspnea Methods: A four year consecutive cohort from a regional community palliative care service in Western Burburan S M1 Australia was used to compare baseline breathlessness 1National Cancer Institute of Brazil (INCA), Cancer before oxygen therapy with dyspnoea sub-scales on the Hospital IV - Palliative Care Unit, Rio de Janeiro, Brazil symptom assessment scores (SAS; 0-10) one and two weeks after the introduction of oxygen. Demographic Aims: Dyspnea is one of the most frequent and and clinical characteristics of people who responded distressing symptoms experienced by terminally ill were included in a multivariable logistic regression cancer patients. The palliation of the dyspnea model. significantly improves patient comfort as the Results: Of the study population (n=5,862), 21.1% progression of the disease worsens. The aim of effective (n=1,239) were prescribed oxygen of whom 413 had dyspnea management is to minimize the patient´s before and after data that could be included in this perception of breathlessness. For this purpose, we

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 39 Free communication sessions

FC 02.5 disseminated cancer (p=0.04). recommendations. Experts (clinical cachexia experts, Conclusions: Insomnia was a frequent symptom in palliative care professionals and other stakeholders) Course of breathlessness over time in patients PCU, more frequently reported by patients coming have been identified and were asked to participate in with advanced cancer and COPD from acute care, those presenting dyspnea, diurnal this consensus procedure. A 0 to 10 scale has been used somnolence and feeling of non-restorative sleep. covering the range from total disagreement to total Bausewein C1, Kühnbach R2, Booth S3, Gysels M1, Moderate to severe insomnia was associated with agreement. A mean score ≥7 indicates agreement, a Higginson I J1 disseminated cancer. Patients in PCU presented a high mean score £3 indicates disagreement. The answers of 1King’s College London, Palliative Care, Policy & level of emotional distress. Insomnia in PCU seems to the first round have been processed and circulated back Rehabilitation, London, United Kingdom, 2University be dependent on cancer status; organic changes or to the participants asking for revision of their answer. of Munich, Interdisciplinary Centre for Palliative treatment associated with advanced disease may Results: Answers from 26 experts from different Medicine, Munich, Germany, 3Addenbrooke’s Hospital, contribute to sleep cycle disruption. positions were evaluated after the first round. Mean Palliative Care, Cambridge, United Kingdom consensus score ranged from 6.52 to 8.52 in the 17 statements. Mean scores were above 7 for 13 statement, Aim: Breathlessness is a common and distressing indicating adequate consensus. For the 17 statements symptom in patients with advanced disease. Most FC 03 Gastrointestinal Symptoms between 0 and 19% of respondents scored £3, and 54 to information comes from cross-sectional studies but 92% scored ≥7. little is known about breathlessness trajectories over and Cachexia Highest mean scores were reached for time. The aim of this study is to describe and compare recommendations on nutritional counselling (do it), the course of breathlessness over time in patients with prokinetics (probably do it) and steroids (do it). advanced cancer and severe COPD. FC 03.1 Conclusions: Using scoping literature reviews and the Methods: Longitudinal study in breathless patients GRADE methodology it was possible to produce draft with advanced cancer or COPD stage III/IV. Monthly EPCRC clinical guidelines on cancer cachexia: recommendations that met high consensus with data collection with postal questionnaires (including Draft recommendations clinical experts. Completition of the Delphi procedure modified Borg scale). Trajectories of patients who will lead to the final set of recommendations for the provided Borg scores ≥ 3 time points were analysed Trottenberg P1, Elsner F1, Strasser F2, Fearon K3, Kaasa S4, clinical practice guideline. using visual graphical analysis (VGA) and grouped. For Radbruch L1 reliability, a second researcher regrouped the 1RWTH Aachen University Hospital, Department of trajectories. Palliative Medicine, Aachen, Germany, 2Cantonal FC 03.3 Results: Between June 2006 and May 2007 49 cancer Hospital, St. Gallen, Switzerland, 3University of and 60 COPD patients were recruited and followed up Edinburgh, Edinburgh, United Kingdom, 4Norwegian Weight-loss alone is insufficient to define and for six months or until death. 30/49 cancer and 6/60 University of Science and Technology, Trondheim, classify cancer cachexia in advanced pancreatic COPD patients died during data collection. 21/49 Norway cancer cancer patients and 43/60 COPD patients provided data for individual breathlessness trajectories. After visual Aims: The European Palliative Care Research Bye A1, Hjermstad M J2, Jordhøy M3, Maakestad I H4, analysis, four different trajectory groups could be Collaboration (EPCRC) is developing evidence based Iversen P O4 identified in both disease groups (% cancer/ COPD): clinical practice guidelines for pain, depression and 1Akershus University College, Lillestrøm, Norway, stable (33/19), fluctuating (33/47), increasing (14/26) cachexia in advanced cancer patients. 2Center of Palliative Medicine, The Cancer Center, Oslo, and decreasing (19/2) breathlessness. Inter-rater Methods: Key questions represented the scope of the Norway, 3Innlandet Hospital, Gjøvik, Norway, agreement was high for both conditions (Cohen’s guidelines. Scoping literature reviews led to draft 4University of Oslo, Department of Nutrition, Oslo, kappa 0.93 for the cancer and 0.85 for the COPD recommendations for these key questions which were Norway group). presented to an external expert pool in a consensus Discussion: Breathlessness follows different procedure. Systematic reviews and consensus methods Aim: Cancer cachexia is a major contributor to trajectories. Fluctuation and increase of breathlessness will be used to develop the final version of the morbidity in advanced pancreatic cancer (PC). are the most common trajectories in COPD patients guidelines. However, few evidence based strategies for treatment of whereas fluctuation and stable trajectories seem to be Results: Key questions have been formulated and this condition and for symptom alleviation exist. A most common in cancer patients. However, numbers of discussed at the EAPC-Congress in June 2007, as well as major obstacle may be the lack of an agreed-upon cancer patients are small as many patients died during with experts and stakeholders on the web. A broad definition. This prospective study classified PC patients data collection and thus data from this group is very spectrum of fields and topics has been included such as according to two suggested definitions. The purpose limited and has to be interpreted with caution. definition, epidemiology, aetiology, pathophysiology, was to evaluate their ability to discriminate between Longitudinal studies in palliative care populations are assessment and classification, psycho-social and ethical patients in terms of morbidity and well being. still challenging but give important insights. VGA is a issues, as well as drug and non-drug treatment. Methods: A total of 39 Norwegian patients with reliable and useful form to analyse longitudinal data of Following this discussion 17 draft recommendations in advanced PC, 18 females (46%), 21 males were included relatively small sample size. 5 categories have been formulated. In respect of the from 2006 to 2008. EORTC QLQ-C30 and ESAS were palliative care setting the draft recommendations are used to assess quality of life and symptoms at diagnosis. addressing the net-benefit of the intervention for the Two definitions of cachexia were used for classification: FC 02.6 patient, not only the efficacy itself. (A) The conventional definition based on > 10% weight The draft recommendations include enteral nutritional loss, and (B) A definition based on three key factors, sessions Insomnia and related factors in a palliative care therapy (probably do it) for nutritional treatment; weight loss > 10%, reduced food intake (<1500 kcal/d), unit megesterol progesterin (probably do it), steroids (do it) systemic inflammation (CRP >10mg/l), defined as and prokinetics (probably do it) for drug treatment; cachexia when ≥ 2 of 3 factors were met. Renom A1, Farriols C2, Silvent M A2, Arocas A2, Arias S2, nutritional counselling and education (do it), Results: Median age was 62 years, median ECOG status Free communication Free Planas J2, Ruiz A I3 psychotherapeutic interventions (do it), physical one. Seventeen patients (44%) had locally unresectable 1Institut Municipal d’Assistència Sanitària (IMAS), training or other physical treatment options (do it) for cancer, 16 (41%) metastatic and six (15%) recurrent Department of Geriatrics, Barcelona, Spain, 2Institut non-drug treatment; multimodal therapy (probably do disease. Weight loss > 10% identified 28 (72%) patients Municipal d’Assistència Sanitària (IMAS), Palliative Care it), prophylaxis (probably do it). as cachectic. They reported significantly more fatigue Unit, Department of Medical Oncology, Hospital de To uncover discordance experts have been asked for than the others (mean scores 39 vs 58; p<0.05) on the l’Esperança, Hospital del Mar, Barcelona, Spain, their ratings on these draft recommendations using the QLQ-C30. When classified with ≥ 2 of 3 factors, 26 3Institut Municipal d’Assistència Sanitària (IMAS), Delphi consensus method. Where no or little patients (67%) were cachectic. These patients reported Department of Psychiatry, Barcelona, Spain consensus is reached the evidence will be evaluated by significantly more fatigue (37 vs 61, p < 0.01), pain (21 systematic reviews. vs 53, p < 0.01) and poorer global health (65 vs 48; Aims: To determine the prevalence of insomnia in a Conclusions: Draft recommendations take a central p<0.05), physical (78 vs 62; p<0.05) and emotional Palliative Care Unit (PCU) and related factors. position for the evaluation of consensus and evidence functioning (80 vs 74; p< 0.05) than non-cachectic Methods: 138 patients consecutively admitted in PCU in the guideline developing process. patients. Mean ESAS scores were significantly higher for were submitted to the following inclusion criteria: >3 pain, fatigue and xerostomia. days hospitalization, Pfeiffer Questionnaire Conclusion: A 3-factor cachexia model provides more punctuation ≤4 and Karnofsky Index ≥30. Forty-five FC 03.2 information about symptoms that may reflect patients (32%) met these criteria. Insomnia was nutritional deterioration in advanced PC, than weight detected through the question “Have you been EPCRC guidelines on cancer cachexia: First loss alone. A potential interaction between nutritional suffering from insomnia since you have been results form a Delphi procedure deterioration and morbidity should be evaluated in admitted?” and evaluated by the Sleep Disturbance larger patient samples. Scale (SDS) (range 0-10). Physical, psychological and Trottenberg P1, Elsner F1, Pestinger M1, Caraceni A2, environmental factors that might be related to Higginson I3, Kaasa S4, Radbruch L1 insomnia were registered. Emotional distress was also 1RWTH Aachen University Hospital, Department of FC 03.4 measured by the Hospital Anxiety and Depression Scale Palliative Medicine, Aachen, Germany, 2Fondazione (HADS). The origin of patients (acute care vs home), IRCCS Istituto Nazionale di Tumori, Milano, Italy, Randomised phase III clinical trial to evaluate pharmacological treatment and the nature and 3King´s College, London, United Kingdom, 4Norwegian the efficacy and safety of an integrated extension of disease were collected. University of Science and Technology, Trondheim, treatment (diet, pharmaco-nutrional and Results: Among the 45 patients included, 53.3% were Norway pharmacological) in cancer patients with men, 63.6% came from acute care, 93.3% suffered from cancer-related anorexia/cachexia and oxidative cancer, 59.5% with disseminated cancer, and the mean Aims: The EPCRC will develop clinical practice stress: Interim results age was 72.2±11.0. The prevalence of clinically guidelines for the treatment of pain, depression and significant emotional distress (HADS≥19) was 62.2%. cancer cachexia in advanced cancer patients. To Mantovani G1, Macciò A1, Madeddu C1, Panzone F1, Dessì The question regarding insomnia was answered uncover fields of discordance between experts in the M1, Serpe R1, Antoni G1, Massa E1, Astara G1 affirmatively by 51.1% of patients. It was significantly guideline developing process we performed a Delphi 1University of Cagliari, Medical Oncology, Monserrato, associated with coming from acute care (p=0.03), consensus procedure on draft recommendations. Italy presence of dyspnea (p<0.01), diurnal somnolence Methods: From a list of clinical key questions draft (p<0.01) and feeling of non-restorative sleep (p<0.05). recommendations were constructed using the GRADE Aim of the study: In April 2005 we started a phase III Moderate to severe insomnia (SDS≥5) was present in system. A Delphi process with two rounds has been randomised study to establish the most effective and 35.5% of patients, and was only associated with performed to reach consensus on these draft safest treatment of cancer cachexia (CACS) addressing

40 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Free communication sessions as primary endpoints: lean body mass (LBM), resting FC 03.6 help’. Among those who reported that they had energy expenditure (REE), total daily physical activity, received no help, about two thirds had a wish for help. serum IL-6, TNF-α and fatigue. Oral symptoms in palliative care and their Conclusion: This is probably the first study that Methods: The sample size was 475 patients (pts). association with local microbiological and measures needs in a representative sample of advanced Eligibility criteria: hystologically confirmed tumors of clinical findings cancer patients, and the first study differentiating any site; weight loss ≥ 5% in the last 3 months and/or between ‘insufficient help’ and ‘no help despite a wish abnormal values of laboratory parameters predictive of Alt-Epping B1, Kordestani Nejad R1, Schliephake H2, Gross for help’. It shows that advanced cancer patients in the onset of CACS; life expectancy > 4 months. All pts U3, Eiffert H3, Hunsmann G4, Nauck F1 Denmark have unmet needs, and that a large enrolled received as basic oral treatment: poliphenols + 1University Medical Center Göttingen, Dept. of proportion of patients receives ‘insufficient help’ or ‘no alpha lipoic acid + carbocysteine + Vitamins ACE. Pts Palliative Medicine, Göttingen, Germany, 2University help, despite a wish for help’. Improvements in were then randomised to one of the following 5 arms: Medical Center Göttingen, Dept. of Oral and palliative care are warranted. 1) Medroxyprogesterone Acetate (MPA)/ Megestrol Maxillofacial Surgery, Göttingen, Germany, 3University Acknowledgement: The study was supported by the Acetate (MA); Medical Center Göttingen, Dept. of Medical Danish Cancer Society (PP01006 and PP05033), and the 2) Pharmaco-nutritional support containing EPA; Microbiology, Göttingen, Germany, 4University Medical Ministry of Health´s Grant for Development and 3) L-carnitine; Center Göttingen, Dept. of Virology, Göttingen, Analysis (2003-0201-39). 4) Thalidomide; Germany 5) MPA/MA + Pharmaco-nutritional support + L- carnitine + Thalidomide. Introduction: Oral symptoms like dry mouth, FC 04.2 Treatment duration was 4 months. Interim analyses difficult swallowing, local pain, halithosis or were planned after every 100 randomized pts. disturbances of taste play a relevant part for patients in Evaluation and comparison of two prognostic Results: At September 2008, 280 pts were randomized palliative care. Underlying causes have been described scores and the physicians´ estimate of survival in and 240 were evaluable: M/F 167/113, mean age 62 yrs in oncological settings with regard to cancer therapy terminally ill patients (range 30-84), 95% stage IV. A first interim analysis on associated toxicity. In palliative care though, the 125 pts showed a significant worsening of LBM, REE underlying causes for oral symptoms and their Bertram L1, Stiel S1, Neuhaus S1, Nauck F2, Ostgathe C3, and fatigue in arm 2 in comparison to the others and it correlation to the clinical course, drug intake, local Elsner F1, Radbruch L1 was withdrawn from the study. A second interim findings and local microbiological features, have not 1University Hospital RWTH Aachen, Palliative analysis after the enrolment of 204 pts showed arm 1 been sufficiently investigated. Medicine, Aachen, Germany, 2University Hospital significantly less effective than the others for primary Method: One hundred consecutive patients (89 pts. Göttingen, Palliative Medicine, Göttingen, Germany, efficacy endpoints: it was withdrawn from the study. preliminary) of our palliative care unit have been 3University Hospital Cologne, Palliative Medicine, Statistical analysis at September 2008 showed a evaluated with regard to their clinical course (incl. drug Cologne, Germany significant improvement of LBM (by DEXA), REE and intake and time passed since last cancer therapy), fatigue in arm 5 and a significant decrease of IL-6 in subjective symptom burden (Midos) and oral Background: Most terminally ill patients request arm 3 and 5 and TNF-α in arms 3 and 4. As for safety, symptoms. The oral status was examined and information about their remaining life span. the treatment was overall well tolerated and the patient documented by a dentist, followed by swab and mouth Professionals are not generally willing to provide compliance was good. wash for semi-quantitative bacteriological and prognosis on survival, even though they are expected to Conclusion: The results so far seem to suggest that the mycological culture and for herpes simplex virus PCR. be able to do so from their clinical experience. This most effective treatment for cancer pts with CACS Results: Dry mouth and taste disturbances were the study aims to find out whether the Palliative Prognostic should be a combination regimen. most often reported oral symptoms, associated to any of Index (PPI) and the Palliative Prognostic Score (PaP-S) the given clinical or microbiological findings. In almost are appropriate, specific and sensitive to estimate all (86/89) patients, coating (17/86 candida-like survival time in patients receiving inpatient palliative FC 03.5 plaques) were found as the most prevalent clinical care in Germany. finding. Candida-like plaques, positive candida cultures Method: PPI and PaP-S were assessed in addition to the A post-hoc analysis of gastrointestinal adverse or HSV PCR, anticholinergic drugs, benzodiazepines or core documentation data set of the Hospice and events with methylnaltrexone treatment in opioids were also strongly associated with the Palliative Care Evaluation (HOPE) for patients admitted patients with advanced illness and opioid- perception of dry mouth, less often with perception of to the palliative care units in Aachen, Bonn and induced constipation altered taste. A dental co-factor to symptom Cologne. Time of survival was defined as the difference development was not identified. In 4 patients, between the day of completion of the instruments Slatkin N1, Lynn R2, Su C2, Yan N2, Wang W2, Israel R J3 multiresistant bacteria colonisation was diagnosed (excluded) and the day of death (included). 1City of Hope National Medical Center, Duarte, United incidentally. Results: Survival time was compared with physicians´ States, 2Wyeth Research, Collegeville, United States, Discussion: In summary, we could not give proof of a estimations and prognostic scores in 83 patients. 3Progenics Pharmaceuticals Inc., Tarrytown, United clear cut correlation between a single item symptom Whereas the estimates of the PPI and the PaP-S States and a single clinical finding; the most prevalent correlate highly, even higher correlations are found for symptoms and the most prevalent clinical signs were the physicians´ prognosis and the scores. Correlations Aim: Methylnaltrexone, a selective μ-opioid receptor reported or found independently. This challenges a day between survival time and the prognostic scores or antagonist, decreases peripheral effects of opioids to day practice where diagnostic routine instead of a physicians´ prognosis were lower. Physicians without affecting centrally-mediated analgesia. The symptom-guided approach dominates treatment overestimated survival time on average fourfold. efficacy and safety of subcutaneous methylnaltrexone decisions for palliative mouth care. Discussion: The prognostic scores are not able to sessions in patients with advanced illness and opioid-induced produce a precise, reliable prognosis for the individual constipation was demonstrated in 2 phase 3 studies. patient. Nevertheless they can be used for ethical Methylnaltrexone significantly induced laxation within decision making and for team discussions. 4 hours of dose (62% and 58% for methylnaltrexone FC 04 Assessment and The physicians´ clinical estimation is more often in line 0.15 [N=47] and 0.3 mg/kg [N=55], respectively vs 14% with patients´ survival time and test results for very bad communication Free for placebo [N=52] in study 1 [single dose]; 48% for Measurement Tools or very good prognosis than with moderate. methylnaltrexone 0.15 mg/kg [N=63] vs 16% for placebo [N=71] in study 2 [multiple dose]). Abdominal pain (preferred term) was the most frequently reported FC 04.1 FC 04.3 adverse event (AE). This post hoc analysis further examined abdominal pain AE seen in the double-blind Assessing the level of unmet palliative needs in a How is depression assessed and classified in (DB) and open-label (OL) portions of the 2 phase 3 nationally representative sample of Danish studies from palliative cancer care? studies. advanced cancer patients Methods: In these studies, AE verbatim terms from Wasteson E1, Loge J H2, Brenne E3, Higginson I J4, Hotopf individual case report forms were coded to preferred Johnsen A T1, Petersen M A1, Pedersen L1, Groenvold M1 M5, Lloyd-Williams M6, Kaasa S3, on behalf of the EPCRC terms using the Medical Dictionary for Drug Regulatory 1Bispebjerg Hospital, Department of Palliative 1Division of Psychology, Department of Social Sciences, Affairs ver. 6.0. Descriptive summary statistics were Medicine, Copenhagen, Denmark Midsweden University, Campus Östersund, Sweden, reported for the post-hoc analysis. Faculty of Medicine, NTNU, Department of Cancer Results: During the treatment period in the 2 DB Aims: Little is known about the need for palliative care Research and Molecular Medicine, Trondheim, Norway, studies, 47 (29%) patients receiving methylnaltrexone among advanced cancer patients who are not in 2Rikshospitalet University Hospital, National Resource (vs 12 [10%] placebo) reported abdominal pain as an specialist palliative care. The aim of this study was to Centre for Studies of Long-term Effects after Cancer, AE, which was mostly mild to moderate in severity. In assess the need for palliative care in a nationally Department of Clinical Cancer Research, Oslo, Norway, verbatim terms, abdominal pain was most often representative sample of advanced cancer patients. 3Faculty of Medicine, NTNU, Department of Cancer reported as “abdominal cramping” or “cramps” (>80% Methods: All hospital departments from three regions Research and Molecular Medicine, Trondheim, Norway, of patients with abdominal pain). Across all phases of in Denmark were invited to participate. From each 4Palliative Care and Policy, King’s College London, the 2 studies, the highest incidence of abdominal pain department a list of patients with cancer was retrieved London, United Kingdom, 5Institute of Psychiatry, was reported for methylnaltrexone dose 1 and from the patient register. The medical records of the King’s College London, London, United Kingdom, decreased for dose 2 (study 1: 31% after dose 1, 20% patients were reviewed and patients were included if 6Community and Behavioural Sciences, University of after dose 2; study 2: 13% after dose 1, 3% after dose 2). they had cancer stages 3 or 4. Participating patients Liverpool, Academic Palliative and Supportive Care The decreasing trend was maintained for subsequent filled in the newly developed and validated 3-levels-of- Studies Group, School of Population, Liverpool, United doses. needs-questionnaire (3LNQ). An unmet need was Kingdom Conclusions: Abdominal pain was reported defined as a) having received ‘insufficient help’, or b) predominantly for the first dose of methylnaltrexone having received ‘no help despite a wish for help’. Background: Depression is one of the most studied and was most often described as abdominal Twelve areas of needs were assessed. mental disorders in palliative care. Still there exist no cramping/cramps in verbatim terms. After the first Results: In total, 54 (68%) of the hospital departments agreed-upon methods on how to assess and classify dose, the incidence of abdominal pain substantially participated. A questionnaire was sent to 1,630 patients depression either for research or clinical purposes. decreased with subsequent doses. and 977 (60%) participated. The most frequent unmet Methods: A systematic literature review was performed needs were related to fatigue (35%), limitations in within the framework of The European Palliative Care physical activities (32%), limitations in work and daily Research Collaborative (EPCRC). Extensive electronic activities (32%), worries (31%) and sexual life (28%). database searches as well as hand search were carried For each need, about half of the patients who reported out. Studies assessing and/or classifying depression in a that they had received help, had received ‘insufficient palliative cancer care setting were included. .

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 41 Free communication sessions

Results: Although heterogeneity in assessments was are detected, prevented and dealt with. Our aim was to FC 05 Education expected, the diversity in the reviewed papers was more review the research on medical errors in palliative care pronounced than anticipated. In the 202 included and formulate a research agenda. papers, 106 different assessment methods were used. Methods: We performed a systematic literature review FC 05.1 Sixty-five of these were only used once. There were in using the database PubMed. For the last ten years, we total few case-definitions of depression. The screened for the keywords “palliative care”/”palliative Interprofessional education in an in-patient classifications were in general based on cut-off scores medicine”/”end-of-life care”/”terminal care” and palliative care unit (77%) and not according to diagnostic systems. Among “medical error”/“patient safety”. The identified these, the full range of the DSM-IV diagnostic criteria publications were classified according to type, content Todd J1, Hoy A1, Garland E1, Coleman J1, Biggerstaff B1 was seldom assessed, i.e. less than one third of the and quality, and empiric research results were extracted 1Princess Alice Hospice, Esher, United Kingdom assessments in the review took into account the and critically assessed. duration of symptoms and 18% assessed consequences Results: The few studies we identified on medical Aim: To evaluate the experience of medical, nursing and impact upon patient functioning. Thus, it is not errors in palliative care were mostly case studies and and therapy students undertaking an Interprofessional possible to distinguish formal depression from normal editorials. There are some empiric studies on errors in Practice Placement (IPP) in an In-patient Palliative Care and transient reactions. prognostication, advance care planning, Unit. Conclusions: A diversity of assessment methods has communication and analgesia. The methodological Methods: The IPP has been developed to provide a been used. Few studies classified depression by referring approaches of these studies are diverse and often practice learning experience, during the penultimate or to a diagnostic system or by using cut-off scores. This inadequate. The definition of error in palliative care has final year of health education. Students work as a has negative consequences for the estimation of not been addressed and there is no study describing member of an inter-professional team with a selected prognosis and evaluation of treatment. Evidently, there what patients, relatives or health care professionals group of patients in a live ward setting, under the is a need for a consensus on how to assess and think about errors in palliative care. supervision of qualified staff. Students are given the conceptualise depression and related conditions in Conclusion: There is a need for both theoretical and opportunity to explore and develop their own palliative care. empirical research on errors in palliative care. Three professional skills, but also demonstrate collaborative questions should be addressed first: practice with other members of the healthcare team. (1) How is an error in palliative care defined and what Following a very successful 4 year inter-professional FC 04.4 kinds of errors are there? training programme in a local rehabilitation unit, the (2) How can errors in palliative care be detected and hospice was approached as a new host site. The IPP Personal dignity at the end-of-life: Comparing prevented efficiently? placements in the In-patient Palliative Care Unit started the patient dignity inventory with open-ended (3) How should professionals communicate with their in September 2008 and will continue until May 2009. questions patients about committed errors? The IPP programme is being run by a generic facilitator (nursing background), medical facilitator and therapy Pasman H R W1, Rurup M L1, Onwuteaka-Philipsen B D1 facilitator (occupational therapist). During this period, 1VU University Medical Center, Social Medicine, EMGO FC 04.6 we will have 6 rotations of 12 students from medical, Institute, Expertise Center for Palliative Care, nursing and therapy backgrounds, coming on 3 week Amsterdam, Netherlands Clinical operations in a comprehensive placements. integrated palliative medicine program Results: Qualitative evaluations from students are Background: Chochinov has developed the Patient being collected for each rotation. The evaluations to Dignity Inventory (PDI) for measuring factors Lagman R L1, Walsh D2, Le Grand S B2, Davis M P2 date are extremely positive, and have highlighted that important to maintaining or hampering dignity based 1Cleveland Clinic, Harry R. Horvitz Center for Palliative although this can be a challenging placement, the on studies among terminally ill cancer patients in Medicine, Cleveland, United States, 2Cleveland Clinic, palliative care setting has given them a great Canada. It is not known to what extent the items are Harry R. Horvitz Center for Palliative Medicine and opportunity to observe and participate in real inter- valid for use in other patient groups and in other Supportive Oncology, Cleveland, United States professional learning that will change their future countries. practice. We will present the cumulative evaluations of Aims: To compare answers to an open-ended question Aims: the IPP placement from the students, and more on factors important to dignity with answers on the 1) describe the clinical operations of a comprehensive specifically their experience in the palliative care PDI among Dutch people with an advance directive integrated program that ensures efficient delivery of setting, as well as the lessons learnt by the facilitators. (people with different health status). services in acute care Conclusion: An In-patient Palliative Care Unit can Methods: Quantitative framework of this study is the 2) enumerate the advantages of the program for contribute significantly to inter-professional education cohort of people with an advance directive. In the clinical, financial and research objectives to be met for medical, nursing and therapy students. second measurement round (n=5477, spring of 2007) 3) identify its weaknesses and shortcomings to find the cohort was randomly split in half. For one half the practical solutions for optimal delivery of services. PDI (version of 2006) was included in the written Methods: A comprehensive description of the clinical FC 05.2 questionnaire, while the other half received an open operations of the program will be discussed. question on factors important to dignity. The open- Discussion: An integrated program in palliative What assessment instruments should be used to ended question were coded. The coding scheme was medicine needs efficient clinical operations to ensure assess palliative medicine knowledge and compared to the PDI to assess to what extent all various service points deliver the services individuals attitudes in medical students and doctors? A important items revealed with the open-ended question and families need. Clinical services include the acute systematic review sessions were represented in the instrument. inpatient palliative medicine unit, inpatient Results: The respondents that filled in the PDI consultation service, outpatient clinics, and home Ward J1 considered most items of the instrument of influence hospice and inpatient hospice services. Clinical 1St Gemma’s Hospice, Leeds, United Kingdom to personal dignity. Items that were least often operations include the daily inpatient census list, Free communication Free considered of influence were ‘changes in physical morning report, weekly interdisciplinary meeting, Aim: Over the last 20 years palliative medicine appearance’ (18% with score 4 or 5 on scale from 1 to family meeting, daily teaching, weekly psychosocial education has dramatically increased; many courses 5), and ‘not feeling you made a meaningful or lasting rounds, weekend signout, master patient list, problem have been developed and described for medical contribution’ (23). The items of the PDI provided a list, consultation note, outpatient clinic template notes, students and a range of doctors. However, only some of solid base for the coding scheme for the open-ended conference room and nursing station communication these courses have attempted to assess the impact on question. All items were mentioned, sometimes in boards, monthly administrative meeting, weekly participant’s attitudes, knowledge, or confidence, and more detail: being treated with respect could be divided research meetings, weekly grand rounds, clinical, fewer use validated tools to do so. It is becoming among others in respect for religion, respecting patient research and educational retreats, and business plans. increasing important to assess the effectiveness of wishes, being taken serious by the physician. There are several advantages: education and therefore a systematic review was Influential factors that were not reflected in the PDI 1) Communication between caregivers and undertaken to were care characteristics (e.g. cared for in a quiet or safe patients/families is improved, (1) identify instruments which measure palliative place), and being able to communicate. 2) Quality of care is improved, medicine knowledge or attitudes in medical students or Conclusions: Although more qualitative methods 3) Research activities are encouraged and can flourish doctors, and provide more detailed information, the PDI seems in this environment, (2) evaluate the development, validity, reliability, and suitable for use among Dutch people with an advance 4) Continuity of care is ensured, feasibility of these instruments. directive. 5) Clinical services compliment each other and Methods: A systematic search of seven key electronic facilitate the financial viability of the program. databases using keywords was undertaken in addition Limitations and shortfalls of the all aspects of the to ancestry searching. The search produced 4783 FC 04.5 program are discussed in periodic retreats held several citations and 164 articles were retrieved and reviewed. times a year to improve services and plan future 80 studies did not meet the inclusion criteria and 63 Medical errors and patient safety in palliative program development. studies used non-validated instruments. care Conclusion: A comprehensive integrated palliative Results: 21 studies met the inclusion criteria and were medicine program consists of different service points to assessed for quality; 9 instruments for use in Dietz I1, Borasio G D2, Jox R J2 ensure that the needs of individuals with advanced undergraduates and 13 in postgraduates (one study 1Technical University Munich, Munich, Germany, illness and their families are met. described two instruments). Some of these instruments 2University Hospital Munich, Interdisciplinary Center have undergone thorough testing while others have for Palliative Medicine, Munich, Germany been shown to have only face validity or reliability. Of the nine undergraduate instruments, two have Aims: Patient safety has become a relevant concern as undergone some validation to measure palliative studies have shown that errors in medicine are frequent medicine knowledge, six to assess attitudes, and one and carry huge financial and moral costs. This has led confidence. Of the 13 postgraduate instruments four to research efforts concerning the causes and were identified to assess postgraduate palliative prevention of medical errors, especially in surgery and medicine knowledge, three to assess doctor’s attitudes intensive care. As a result, organizational interventions towards end-of-life care, five instruments to assess both were designed that proved to reduce medical errors and knowledge and attitudes, and one instrument to rate improve patient care. For palliative care as a novel confidence in key areas of palliative care. discipline with distinguishing features, it has not been Conclusion: Further details of the instruments and established yet, what medical errors mean, how they recommendations for the most appropriate

42 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Free communication sessions instruments to assess palliative medicine knowledge development of the project, how to select, prepare and While highly valued, volunteers’ contributions to and attitudes in medical students and doctors will be involve the stakeholders, and how to manage the community care are not well understood by presented. project from beginning to end. professionals. A ´how-to-do-it´ pack produced for hospices and Conclusions: Hospice volunteers are a crucial link in palliative care units will be shared as part of the the network of community care which allows rural FC 05.3 workshop, with examples of work from a variety of people to die with dignity and quality of life, but their health promotion projects. role has been inadequately understood by the formal Permanent education for general practitioners health care system. Our findings point to the need for and nursing home doctors: Learning in peer raising awareness among healthcare professionals of groups FC 05.5 their crucial role in community health.

Wanrooij B S1, Stoffer-Brink A2, Klinkenberg M2 New resources for teaching palliative care: An 1Academic Medical Center, University of Amsterdam, evaluation of a blended learning and a face-to- FC 06.2 Department of General Practice, Amsterdam, face master course Netherlands, 2Comprehensive Cancer Centre Partnership with the police - Bereavement Amsterdam, Amsterdam, Netherlands Barbosa A1, Guerreiro V1, Neto I G1 training for the wider community 1Lisbon School of Medicine, Palliative Care Aims: In The Netherlands, an average general Unit/Bioethics Centre, Lisboa, Portugal Fraus F1 practitioner (GP) is confronted with 4 to 6 palliative 1St Christopher’s Hospice, CANDLE Project, London, care situations a year. That is hardly enough to build up Aim: To promote extended basic training in palliative United Kingdom experience in care for the dying. Nevertheless most care to health professionals our academic palliative care patients wish to die at home. In The Netherlands a unit developed in the last five years two pedagogical St. christopher´s Hospice Candle project has been unique and simple education programme has been strategies: a conventional face-to-face master course (12 involved in a major training initiative with the London developed to acquire the necessary knowledge and months) and a blended learning post-graduate Metropolitan Police since 2000. When a sudden death skills. intensive course (3 months). Our aim is to evaluate the such as homicide, suicide or road traffic accident occurs Methods: All aspects of palliative care are trained along effectiveness of these different teaching methodologies and the police are involved, a Police Family Liason with consultation and communication skills. The with a set of similar subjects organized with the same Officer is assigned to work with the family until the course takes 8 days education and 12 meetings in peer structure. case is resolved or closed. these officers did not receive groups in 2 years. The most special about this Methodology: A sample of 234 participants from any specialist training until a Public Enquiry 1999 educational programme is that participants form small master courses (N= 89, 20.2% male, 36.0% doctors, (Macpherson W.) following a high profile unsolved fixed peer groups of colleagues supported by a 55.1% nurses, 61.8% hospital settings, 29.2% murder case reported that their care for bereaved consultant in palliative care. However, the learning community health centre) and blended learning post- families was inadequate and needed attention. does not stop after 2 years. The peer groups continue to graduated courses (N= 145, 22.8% male, 38.6% doctors, The Candle Project was asked to provide the meet even after the 2 years of education. During a peer 50.3% nurses, 31.7% hospital settings, 65.5% bereavement training as part of a 5 day intensive group session palliative case histories are community health centre), were assessed by: residential course. there are 14 courses per year, and to methodologically discussed. The consultant in expectancy questionnaire, pre and post- multiple date over 1500 officers have been trained. A half day is palliative care adds his/her expertise. choice test and students course evaluation allocated to bereavement, covering sudden and Results: This programme offers GPs 8 days of questionnaire. traumatic death, bereavement theories and the needs of education and training and a theoretically permanent Results: There were significant statistical differences adults and children, based on palliative care training. sharing of experience with peers. Peer group meetings between the total scores of pre and post multiple choice The courses have all been evaluated, and the teaching encourage keeping up with the state of the art in test (master course: t=11.56, p<0.0001; blended learning on bereavement is consistently rated as the best part of palliative care. The first course started in 1997. By now course: t=25.50, p<0.0001) and in all the areas. the course. 600 GPs are trained and participate(d) in 90 peer Blend learning group showed great satisfaction with the The outcomes have been: groups. Evaluation shows positive outcomes on flexibility and the usefulness of the course for their 1. The course model has been adopted for police forces knowledge, communication skills and feelings of practice. throughout the UK and Eire and has been piloted in confidence. A considerable amount of peer groups that Conclusions: Blended learning methodology showed Holland ended the course still exist and is active. the same effectiveness of the master course in the 2. The Candle project was appointed as bereavement Conclusions: Learning in peer group seems successful comparable cognitive domains and it is suitable and consultant to the British Government´s Humanitarian according to the evaluation, the enthusiastic easy methodology to train large number of teams. Assistance Unit since 9/11World Trade Centre, Bali participation of GPs and the long term existence of a lot bombings, SE Asian Trunami and 7/7/ London of peer groups. bombings. The expertise of palliative care professionals The concept of ‘learning in a peer group’ for GPs is was recognised at ministerial level, and impacts directly developed by Bernardina S. Wanrooij, Department of FC 06 Committed to People on the care the bereaved relatives received. General Practice, Academic Medical Center, University of 3. Whole communities benefit from greater awareness Amsterdam, Amsterdam, The Netherlands. In cooperation of the issues around death and bereavement. with several Comprehensive Cancer Centres (CCCs), she FC 06.1 The oral presentation will describe the project, and carried out this programme 13 times. CCC Amsterdam include tips on how to make death and bereavement sessions starts in 2009 with the next revised course. Hospice volunteers in rural communities: An training acceptable to a lay audience. untapped resource for people who are dying, their families and communities FC 05.4 FC 06.3 Kelley M L1, McKee M2, Guirguis Younger M3, Nadin S1, communication Free ´Health promotion and public education at the MacLean M1 Implementing a comprehensive public health end of life´ - Changing attitudes towards death 1Lakehead University, Centre for Education and approach to palliative care development in and dying and breaking the final taboo Research on Aging and Health, Thunder Bay, Canada, Namibia 2Lakehead University, Social Work, Thunder Bay, Hartley N A1, Kraus F2 Canada, 3St. Paul University, Ottawa, Canada Downing J1, Tymon J2, Mwangi-Powell F1, Powell R A1, Kaye 1St. Christopher’s Hospice, Senior Management, R1 London, United Kingdom, 2St. Christopher’s Hospice, Little research exists about the role of hospice 1African Palliative Care Association, Kampala, Uganda, CANDLE Project, London, United Kingdom volunteers in providing end of life care in rural 2African Palliative Care Association, Windhoek, communities. Research does suggest that rural people Namibia ´As a society we do not discuss death and dying´ (End of often seek informal (non-professional) helpers for Life Strategy 2008). The UK government´s End of Life advice, emotional support, and tangible aid. Given the Aims: Palliative care (PC) is still a new concept in Care strategy gave as one of the objectives to ´increase lack of professional palliative care services in rural Namibia. The African Palliative Care Association is public awareness and discussion of death and dying´. communities, hospice volunteers are a valuable rural working with local stakeholders to introduce palliative This area of end of life care is often overlooked or resource. care in a sustainable & culturally appropriate manner. avoided by professionals. This presentation/workshop Research aim: To document the role of hospice The aim of the program is to create local capacity to will present the work of the St. Christopher´s Hospice volunteers in providing end-of-life care in one rural expand the coverage & quality of palliative care. Health Promotion Projectm which was mentioned in community. Design: The public health approach to palliative care the strategy document as an exemplar of good practice Study design: A focused ethnography was conducted i.e. Policy, Drug Availability, Education & in this field. One of the places public education can in a Canadian rural community (population 2,500) Implementation, guides the development of PC. APCA happen is in school communities, where we have the with a well established a hospice volunteer program. is working with the Ministry of Health & Social Services opportunity to meet children, teachers and parents. Five researchers spent four days in intense fieldwork, to develop capacity for PC scale up through addressing Children from local primary (under 11 years) and interviewing 46 people, including volunteers, clients all 4 components of the approach including secondary (11-18 years) cshools participate in a 4 week and their families, healthcare providers, clergy, police, 1) conducting a national PC situational analysis project with patients and staff from the hospice and paramedics, and the funeral home director. In semi- 2) integrating PC into relevant government policies, children´s bereavement service in an arts project, which structured interviews and focus groups, participants guidelines & standards is then exhibited in the hospice before being taken to talked about how their community cares for its dying 3) augmenting PC education & training through local it´s permenant home in the school. Children and their members and about the role of hospice volunteers. academic & other institutions teachers spend time in the hospice working with Interviews were audiotaped, transcribed, and analysed 4) building capacity of local stakeholders to become PC patients and members of the arts team, and parents are to identify core themes. experts; invited to a celebration at the end of the project. Results: A vibrant culture of natural helping existed in 5) partnering with Catholic AIDS Action (CAA) to Children are offered the opportunity to meet, talk and this community and hospice volunteers had a unique implement PC delivery in a home based program. create large works of art with dying patients. Parents role within it. Volunteers feel the pulse of the entire Results: The implementation of the public health commented that they were able to overcome their fears community and quickly mobilize support in times of approach has resulted in an increase in the and change their own attitudes towards death through heightened vulnerability. They are more than a friend development of PC in Namibia including their children´s participation and their own attendance to dying people, but not like a professional. They 1) the establishment of a national PC task force at the celebration. contribute time and companionship; elements which 2) inclusion of PC in the home based care standards This presentation/workshop will describe the professionals often cannot in under resourced areas. (policy)

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 43 Free communication sessions

3) reviewing the Namibian essential drugs list to contains all information available in Russia on pain (GP-EoLC-I). include PC medications (drug availability) control legislations and starting new palliative care Results: 2096 questionnaires were returned (60.0% 4) training in PC including clinical placements & units. An Internet library in Russian for different groups response rate). In Scotland, 80.9% of practices reported mentorship (education) of professionals and public was organized. The site has participation in the Gold Standards Framework; in 5) Implementation of the pilot program with CAA in the link to the CEE & FSU Palliative Care Monthly England 62.4%; in Northern Ireland 27.49%, and in two sites. Email Newsletter for the Palliative Care in Central and Wales 16.0%. Reported use of the Liverpool or other Conclusion: The Public health approach is key to the Eastern Europe and Former Soviet Union Countries. For Care Pathway by practices was 27.9% in England, 11.9% development of PC & forms an essential framework the first time we have translated and uploaded in in Scotland; 9.6% in Wales, and 8.2% in Northern upon which to base a program along with collaboration Russian the Document “Euthanasia and physician- Ireland. Calculations of the mean scores on the GP- with stakeholders. assisted suicide: a view from an EAPC Ethics Task EoLC-I showed differences among the four nations Force”. The site offers the most important (F=2.874; p=0.022) The mean score for England palliative/hospice care links worldwide. It is a working (mean=30.95; 95% confidence interval FC 06.4 bridge between different countries and regions in (CI)=30.51,31.39; n=1336) was significantly higher than Russia. the mean score for Wales (mean = 28.54; 95% CI = Palliative care in Poland in 2008 26.64,30.43; n=67) and was significantly lower than the mean score for Scotland (mean = 32.10; 95% CI = Leppert W1 FC 06.6 31.09,33.11; n=201). The mean score for Northern 1Poznan University of Medical Sciences, Chair and Ireland (mean = 29.71; 95% CI = 27.64,31.77; n=55) was Department of Palliative Medicine, Poznan, Poland User involvement and the cancer experiences significantly lower than the mean score for England. collaborative: The work of the research partners Conclusion: The implementation of End-of-life care Introduction: Poland is a country with 38 million forum initiatives shows great variation between the four UK inhabitants. Every year 80.000 patients die from cancer nations, reflecting strategic and policy differences. and these patients need palliative care as patients who Froggatt K1, Turner M1, Lancaster Research Partner Forum Further work is required on the extent to which die from other chronic diseases. 1Lancaster University, School of Health and Medicine, differences between nations impacts on clinical Aim of the study: To outline the present stage of Lancaster, United Kingdom outcomes. palliative care in Poland and plans to improve current practice. Material and methods: Information from key Background: User involvement can help ensure that persons in palliative medicine units in Poland by research is undertaken that reflects user priorities and FC 07.2 questionnaire of Experts of project “Best Practice in perspectives. In the UK, the Cancer Experiences Palliative Care in Europe” and Annual (2007) Report of Collaborative (CECo), a NCRI-funded Supportive and Does Liverpool Care Pathway for the dying National Consultant in Palliative Medicine. Palliative Care Research Collaborative, is developing patient (LCP) in hospital make the difference? Results: There are over 500 palliative care units in user involvement through engagement with research Results from a before-after intervention trial Poland and over 130 in-patient units comprising 970 partners (members of the public and service users). In beds. However there is big discrepancy in distribution October 2007 a forum was established to further this Costantini M1, Finelli S1, Di Leo S1, Beccaro M1, Rossi C2, of beds between different provinces e. g. in West work. Flego G2 Pomeranian 1, in Great Poland 8 beds per 100.000 Aims: The Research Partner Forum has two aims. 1National Cancer Institute, Regional Palliative Care inhabitants. The number of beds is insufficient and 1. To support individuals to become involved in the Network, Genova, Italy, 2ASL 3 Genovese, Internal previous calculation (50 beds per 1 million inhabitants development of CECo initiated projects; Medicine, Villa Scassi Hospital, Genova, Italy should be increased to at least 100 beds). Palliative 2. To develop new research proposals, seek funding and home care is better developed in bigger cities than in undertake user-led studies. This is a before-after intervention trial, primarily rural areas and availability differs 35% - 90% between Methods: Monthly meetings, facilitated by a CECo designed to evaluate some process and outcome administrative districts. The aim is to establish at least Research Fellow, are held to provide a regular contact hospital end of life care indicators. one palliative home care team in one administrative between the research partners and CECo researchers. All consecutive cancer deaths occurred in the Medicine district and one in-patient unit in 1 - 2 administrative Further involvement occurs through specific project ward of Villa Scassi Hospital in Genoa (Italy) were districts. Majority of palliative care units are financed by meetings and training events. An annual review is registered in the 4 months before and in the 4 months National Health Fund but resources are insufficient undertaken to identify the benefits and challenges of after LCP implementation. A multiprofessional especially for in-patient units (50 Euro per patient per this work. Palliative Care Team performed the LCP one day). Home care (home hospice) receives about 10 Results: The forum currently has 9 members with a implementation. Euro per patient per day but out -patient clinic only 5 range of backgrounds, personal experiences of life- The non-professional caregivers were interviewed using Euro per visit. The education and research development threatening illnesses and caring responsibilities. To the Italian version of the Toolkit After-Death Family are other priorities. Currently 140 doctors are certified date, 10 meetings have been held since October 2007. Member Interview, developed and validated in USA to as palliative medicine consultants and similarly as Forum members have also attended research training (2 measure quality of care at end of life from the unique nurses specialized in palliative care their number is people), research conferences (3 people) and advice has perspective of family members. The Italian version insufficient. been provided on 7 proposals. The Forum has also includes 34 questions, whose results can be Conclusions: In spite of Poland 5th place in Europe in developed its own research proposal and submitted it summarized in 7 scales. For the purpose of this analysis, palliative care development there are many problems for funding. each scale score was linearly transformed such that all regarding appropriate organisation especially low Conclusions: There are important benefits to CECo of scales range from 0 to 100, with a higher scale score sessions availability of palliative care services in many rural this initiative in ensuring that their research representing a higher quality of care. areas. programme is informed and shaped by user views. Overall, 82 cancer deaths were identified (49 before and However, challenges exist regarding the demands 33 after). We could not find 3 caregivers, 1 patient was placed upon individuals and resources required to without any caregiver, and 17 caregivers refused to be Free communication Free FC 06.5 sustain the involvement of all parties. User involvement interviewed. We interviewed 37 (75.5%) caregivers requires an investment on the part of researchers and before and 24 (72.7%) after the LCP implementation. The first Russian Palliative/ Hospice Care research partners in order to develop effective, A substantial improvement (mean improvement; 95% Information and Resource Website sustainable relationships. Only then will quality CI) in all the Toolkit scales was observed in the sample research projects be developed that appropriately reflect after LCP implementation as compared to the sample Vvedenskaya E S1, Shilova O V2, Denisov V N3 user perspectives. before implementation: information to the patient and 1State Medical University, Nizhny Novgorod, Russian the family (+16.0; 95% CI: -1.0 and 33.6); patient care Federation, 2Regional Centre for AIDS Control, Nizhny planning (+33.3; 95% CI: -18.0 and 85.0); focus on the Novgorod, Russian Federation, 3State Service University, individual needs of the patient (+18.7; 95% CI: 2.2 and Nizhny Novgorod, Russian Federation FC 07 End of Life Care 35.3); emotional needs of family (+16.7; 95% CI: 3.9 and 29.4); coordination of care (+19.4; 95% CI: 6.6 and An ageing population, a growing prevalence of cancer, 32.2); self-efficacy of the family (+16.7; 95% CI: 0.1 and an emerging HIV/AIDS epidemic make a compelling FC 07.1 33.3); overall quality of care (+10.5; 95% CI: -3.0 and argument for immediate attention to palliative care. 24.0). These results strongly suggest that the The purpose of the project (supported by the Help the End of life care initiatives in the UK: How do the introduction of the LCP in an hospital setting might Hospices international grant) was to promote palliative four nations differ? markedly improve the quality of end of life care care development in Russia and the “Russian speaking provided to cancer patients. countries” by sharing information on news and Hughes P M1, Bath P A2, Ahmed N1, Noble B1 achievements in the field and encourage people for 1University of Sheffield, Academic Unit of Supportive new services establishment. Care, Sheffield, United Kingdom, 2University of FC 07.3 The Palliative Care Information and Resource Website Sheffield, CHIMR, Department of Information Studies, was developed. The Website collects and share Sheffield, United Kingdom Comparing the illness experience of patients information about the palliative care history and with cancer and non-cancer diagnoses development, diverse models of care, activities and Background: The promotion of good end of life care innovative programmes around the world, within primary care has been the subject of several Steinhauser K E1, Olsen M K2, Hays J3, Clipp E C3, Arnold International Declarations and guidelines initiatives in the United Kingdom; such as the Gold R4, Christakis N5, Lindquist J6, Wood L7, Tulsky J A8 (Recommendation (2003) of the Committee of Standards Framework, and the Liverpool and All-Wales 1VA and Duke Medical Centers, Medicine, Center for Ministers ... on the organisation of Palliative Care; The Care Pathways. National guidance on supportive and Palliative Care, Durham, United States, 2VA and Duke Solid Facts of Palliative Care and Better Palliative Care palliative care for adults with cancer has emphasised Medical Centers, Biostatistics and Bioinformatics, for Older People, 2005; The Declaration of Venice, organisational changes, and strategies to implement Durham, United States, 3Duke University Medical 2006; The Budapest Commitments, 2007; New guide them have differed between the four nations of the UK. Center, School of Nursing, Durham, United States, on palliative care services for people living with Method: Using a self-complete postal questionnaire to 4University of Pittsburgh, Medicine, Pittsburgh, United advanced cancer, 2007; Joint Declaration and a random sample of GP practices in the whole of the States, 5Harvard School of Medicine, Health Policy, Statement of Commitment on Palliative Care and Pain UK, we aimed to assess uptake of end of life care Cambridge, United States, 6VA and Duke Medical Treatment as Human Rights, 2008; The World Cancer initiatives and concordance with guidance in the four Centers, Health Services Research, Durham, United Declaration, 2008). nations. We prepared statistics on initiative uptake, and States, 7Duke University, Durham, United States, 8VA The site contains regularly updated information about calculated a summary measure of concordance with and Duke Medical Centers, Durham, United States the EAPC and HtheH activities and initiatives. It guidance: the General Practice End of Life Care Index

44 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Free communication sessions

Aim: Specialty care is increasingly used to manage FC 07.5 quality of life seems the most important in patients’ patients with diagnoses of advanced illnesses. Cancer care? What is the signification of statistical data for a has received exceptional attention to relieve the Patients known to specialist palliative care are dying patient? burdens of the illness experience. The purpose of this more likely to die at home paper is to present analyses comparing cancer and non- cancer diagnosis on multidimensional outcomes such Wilderspin N1, Gale S2, Sodha U2, Frame K2, Trotman I2 as functional status, emotional well-being, spiritual 1East & North Herts NHS Trust, Michael Sobell House, FC 08 Ethics in Palliative care well-being, and quality of life. We then model whether London, United Kingdom, 2East & North Herts NHS diagnosis or other demographic factors such as Trust, London, United Kingdom education, income and social support are stronger FC 08.1 predictors of quality of life while living with advanced Objectives: To determine which Mount Vernon serious illness. Cancer Network (MVCN) patients are known to Understanding refusal of therapy: Agreeing on a Methods: A prospective panel of 210 seriously-ill specialist palliative care services before they die, and to way forward patients and their caregivers interviewed monthly for investigate their place of death. up to 4 years or death. Eligible patients had Stage IV Methods: Data was requested from the Thames Cancer Griffiths D1 cancer, advanced CHF (EF <20) or advanced COPD Registry and the Eastern Cancer Registry and 1Monash University, School of Nursing & Midwifery, FEV1 < 1l.), and were identified using clinical databases Information Centre for MVCN patients dying between Frankston, Australia from one geographic region. Baseline measures: gender, July-December 2003. MVCN community specialist ethnicity, education, financial well-being, marital palliative care services (SPC) undertook a data matching This study examines how nursing and medical staff status, and diagnosis; Profile of Mood States, Centers for exercise to identify those patients known to their deal with patients’ refusal of medical treatment in acute Epidemiological Study of Depression scale, Rosow- services. Data was analysed using Microsoft Excel. care hospitals, in order to understand current practices Breslau ADLs, FACIT physical, social, psychological, Results were fed back to participating SPC services. and investigate their sufficiency to address patient spiritual well-being sub-scales. Results: A total of 11/12 MVCN SPC services took part wishes regarding boundaries of acceptable care. Results: Patients outcomes of physical, social, in the exercise. A total of 1895 cancer patients died in Aims: The study sought to identify the main emotional and spiritual well-being did not differ by the MVCN in this period, of whom 862 (45%) were constraints confronting nursing and medical staff, and diagnoses. Patients with non-cancer diagnoses known to SPC services. Patients most likely to access to explain the key factors that moderate the processes exhibited poorer functional status, higher anxiety, and SPC were those registered with brain tumours (62%) of dealing with patients who are suffering from serious greater depression that panel members with cancer. In and respiratory malignancies (57%), whereas only 36% illness, when they refuse treatment. multivariate models, demographic factors such as of patients with haematological malignancies accessed Design: Utilizing a grounded theory method, a sample education and financial situation were more strongly SPC. Those over 75 years of age were less likely (34%) to of 18 nurses and 6 medical practitioners from two associated with illness outcomes than were diagnostic be known to SPC than younger patients (59%). Cancer tertiary public hospitals were interviewed and observed category. patients known to SPC services were less likely to die in during a three month period. In addition, the patient Conclusion: Despite heightened attention to the hospital (29%) than those who were not known (61%) records were also examined. needs of patients with cancer, community dwelling to SPC. Results: The key social problem shared by nursing and persons with non-cancer advanced illness had more Conclusions: medical staff is conceptualized as Competing severe functional impairment and anxiety and 1. Cancer registry data provides a useful data set for SPC Perspectives: Encountering Refusal of Treatment. This depression. Furthermore, when compared in services to investigate access to SPC support and place problem reflects the diverse perceptions and beliefs multivariate models, social factors such as financial of death, both priorities identified by NICE and the that confront participants when patients decide to situation were more strongly associated with poor National End of Life Care Programme. forgo therapy. The key patterns of response that outcomes of anxiety and depression and lower quality 2. Older patients are less likely to access SPC support. emerged were identified in four categories Seeking of life than diagnosis. 3. SPC services may have a significant impact on Clarification, Responding, Advocating and Influencing reducing deaths in hospital. SPC may therefore enable and these represent both positive and negative patient choice as few people express a wish to be cared reactions to patients and their families. Furthermore, FC 07.4 for in hospital when asked their preferences for end of there are several determinants that either augment or life care. restrict the processes adopted by the participants, such Key aspects of support for family carers in the 4. The collaborative approach to the survey enabled as the design and organization of work. last months of end of life care at home local bench-marking of access to services. Conclusion: There is an important need to consider 5. Difficulties included interpreting place and cause of the effects on patients and relatives, who tend to rely Ewing G1, Grande G2, Payne S3 death from death certification data. heavily on the guidance of, and react to health 1The University of Cambridge, Centre for Family professionals, regarding the processes associated with Research, Cambridge, United Kingdom, 2The University decision-making. Where health professionals lack of Manchester, School of Nursing, Midwifery & Social FC 07.6 understanding or when fundamental principles are not Work, Manchester, United Kingdom, 3Lancaster observed, then patients and their families are University, International Observatory on End of Life Biological prognostic factors of survival in a potentially prejudiced and denied the safeguards meant Care, Lancaster, United Kingdom palliative care unit to support and allow them to exercise their right of choice. Aim: Family carers play a crucial role in end-of-life care Czapiuk G1, Pourchet S2, Goldwasser F3, Durand J-P3 Funding: This research was undertaken as an sessions at home. Nursing support is important to carers, but it 1Curie Institute, UMASC (Palliative Care), Paris, France, unfunded PhD project. is unclear which aspects they see as most valuable to 2Paul Brousse Hospital, Palliative Care Unit, Villejuif, themselves. This study investigates views of family France, 3Cochin University Hospital, Medical Oncology, carers on key support factors in the final months of life. Paris, France FC 08.2 Methods: 75 family carers of deceased patients referred communication Free to five UK Hospice at Home services, six to nine Aim: The aim of this study was to develop the Community specialist palliative care nurses months post bereavement. Nine focus groups (FGs), understanding of biological predictive factors in the views on advance care planning with four to eight participants, lasting one and a half to field of palliative care. This prospective monocentric two hours plus 22 semi-structured telephone interviews study considered a cohort of 246 terminally ill cancer Sives D A1, Cornbleet M A1, Murray S A2 with carers unable to attend FGs. Carers were asked to patients admitted in a palliative care unit from January 1Strathcarron Hospice, Stirlingshire, United Kingdom, identify key aspects of support received and shortfalls 2004 through June 2006. 2St Columba’s Hospice, Primary Palliative Care Research in provision. FGs and interviews were audio recorded Methods: Twenty-one currently utilized biological Group, Division of Community Health Sciences, and transcribed verbatim. Data were analysed factors, previously described in the literature as being General Practice Section, University of Edinburgh, thematically using framework analysis approach. potentially predictive of survival in the studied Edinburgh, United Kingdom Results: Carers identified three main support population, were chosen to be analysed. The two categories. statistical methods used were the Kaplan-Meier Survival Aims: Advance Care Planning (ACP) attempts to help First was support that ‘enabled the carer to care’: input Curves, using the log-rank test and the Univariate and patients, their carers and health professionals discuss and assistance from health professionals that ensured Multivariate Logistic Regression Analysis (ULR and preferences and wishes for care at the end of life. they were better equipped to care for the patient. Key MLR) using the odd-ratio, in which the outcome Despite a very limited evidence base, this practice is aspects included a contact person for access to advice variable is the onset of death within 15 days. being advocated as policy and part of routine palliative and services, particularly out of hours, support with Results: 133 men and 113 women were analysed care in some European countries. We aimed to managing symptoms and medications and information (median age: 64.4; range: 18-93.7). The median of understand the views of palliative community clinical about disease progression, prognosis and the dying survival was nine days. A poor prognosis was predicted nurse specialists (CNS) on the extent of the current process. in both statistical methods by the following five practice of establishing patient preferences for care at Second was direct support for the carers themselves, parameters: low Karnofsky performance status (log- the end of life and to explore their attitudes to using a particularly overnight respite, a break in the day and rank: p<0.0001; ULR: p<0.001; MLR: p=0.004), high more structured approach to ACP in patients referred to opportunities to talk about their own feelings. total white blood count (log-rank p=0.0003; ULR: them by general practitioners. Third, the way in which support was delivered: p<0.001; MLR: p=0.012), high aspartate Methods: Three focus groups were conducted with involving the carer in all aspects of the care process, aminotransferase (AST) levels (log-rank p<0.0001; ULR: purposively selected specialist palliative community offering resources in anticipation of need, co- p<0.001; MLR: p=0.007), high lactate dehydrogenase nursing teams working in three different geographical ordination and communication between different (LDH) levels (log-rank p=0.0019; ULR: p=0.008; MLR: areas. One team (ten participants) additionally agencies involved in care and the importance of having p=0.03) and high prognostic inflammatory and participated in individual semi-structured interviews. a relationship / trust in health professionals. nutritional index (PINI) (log-rank p=0.0013; ULR: Focus groups and interviews were digitally recorded, Conclusion: Carers have considerable need for p=0.001; MLR: p=0.033). transcribed and analysed utilizing NVivo. support when looking after someone at home towards Conclusion: The individualisation of biological Results: Palliative CNS currently believe exploring the end of life. However, this support needs to be prognostic factors is a conclusive step to improve patients’ wishes and preferences for care at the end of sensitive to carers’ perceptions about their role and patients’ prediction of survival but complex ethical life is an inherent part of their professional role. responsibility in the patient’s care. issues regarding clinical decision making and the Rapport building, establishing trust and taking the Funding: Burdett Trust for Nursing UK. physician’s duty to inform the patient are challenging patient lead were identified as being essential to the their application in a palliative care unit where the success of their current routine practice. They identified median of survival is nine days. How can we use a however areas where communication is challenging quantity of life prediction tool at a moment where while undertaking these discussions; managing family

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 45 Free communication sessions

conflict , dealing with denial, and the possible raising clinicians focused on a straightforward and honest hope, fear of intractable pain, lost of dignity. The of expectations concerning preferred place of care. information strategy, assessing the patient’s and important and recurrent difference in the number of Conclusions: A more structured approach to ACP was family’s understanding and showing empathy. The registration documents written in French (14%) and viewed positively as a way of improving the recording reasons for continuing futile LST are primarily seen as those written in Flemish (86%) will be analysed and and documentation of patients’ preferences. However, emotional: guilt, mourning, hope for miracles, discussed. This seems to be due in part to cultural reservations were expressed that adopting this approach helplessness, fear of legal punishment and fear of the differences.In our supportive care unit, 25 requests for routinely encourages a check-list approach ignoring the patient’s or family’s response. Other identified euthanasia were followed (3 in 2006, 6 in 2007, 16 in intuitive nature of current practice and the flexible and obstacles were: organizational routines, professional 2008 (end September)). Among them 13 led to advanced communication skills required. Such tools ethics, insufficient legal and palliative knowledge, and euthanasia according to the Belgian law. (10 at hospital must be used sensitively to avoid conflict within the requests for treatment by patients or families. and 3 at home). We met the same clinical and patient, relative and professional relationships. Conclusion: Managing futility could be enhanced by symptomatic conditions as the rest of the country. communication training, knowledge transfer, Furthermore, there were no suicidal ideation and no organizational improvements, and emotional and “intractable depression”. Each patient was seen by our FC 08.3 ethical support systems. psycho oncology team and all symptoms received adequate treatment with an optimal relief (auto- and Ambivalence towards dying. How to understand hetero-evaluations). All cases have been reported (in patients’ wishes ethically FC 08.5 French) to the Federal commission. More specific data (Age, tumors, symptoms evaluation, etc.) will be Ohnsorge K1, Gudat H R2, Rehmann-Sutter C1 Needs assessment for palliative care services in presented. Our experience confirms that Belgian law 1University of Basel, Unit for Ethics in Biosciences, rural areas: High uncertainty regarding ethical meets medical expectations in terms of end-of- life Basel, Switzerland, 2Hopiz im Park, Arlesheim, and legal questions decisions and euthanasia. More than fifty cases are Switzerland reported every month. Supportive care, palliative care Hell J1, Bausewein C2, Fegg M J2, Borasio G D2 and euthanasia are complementary. Aims: Clinical experience and empirical studies have 1District Hospitals Mühldorf, Mühldorf a. Inn, shown that a wish to die of terminally ill patients is Germany, 2Interdisciplinary Center for Palliative frequently not constant but presents itself as a Medicine, Munich University Hospital - Grosshadern, fluctuating, often hypothetical consideration that goes Munich, Germany FC 09 Psychology and typically along with an expressed ambivalent attitude. Caregivers might experience such ambivalent attitudes Introduction: In a project assessing palliative care Communication as puzzling or challenging. Some tend to see them as needs in rural areas in south-eastern Bavaria, special signs of inconsistency or of temporary confusion. emphasis was given to the level of knowledge of health Patients can be unaware of their ambivalence or care professionals concerning ethical and legal FC 09.1 experience it as burdensome. While triggering factors of questions at the end of life. a wish to die have been discussed in the literature, the Methods: A specifically developed questionnaire was Evaluating palliative care patients’ meaning in complex structure of decision-making from the sent to general practitioners and physicians in hospitals life using the Schedule for Meaning in Life perspective of the patients and the role of ambivalence as well as to head nursing staff (in hospitals as well as in Evaluation (SMiLE) remains unclear. nursing homes and outpatient nursing services). Methods: A philosophical-ethical analysis of the Respondents were asked to answer yes or no to the Brandstätter M1, Kramer M1, Haarmann-Doetkotte S1, experience and meaning of ambivalence using a following question: “For seriously ill patients, are Kögler M1, Borasio G D1, Fegg M1 phenomenological-hermeneutical approach, based on physicians legally obliged to provide the following 1Munich University Hospital, Interdisciplinary Center evidences from an ongoing, extensive qualitative treatment in all cases?” The treatments were: of Palliative Medicine, Munich, Germany interview-study with patients in palliative settings, their administration of fluids or nutrition, hospitalization for caregivers and relatives. ileus or bleeding, cardiopulmonary resuscitation (CPR), Background: With life limiting illness, meaning in Results: Ambivalence can be formally defined as oxygen, and pain treatment. The correct answer for all life (MiL) becomes a prominent topic. If MiL is lost, competing feelings or emotions due to expectations treatments is no. desire for hastened death or euthanasia may occur. The about how individuals should act, think or behave. Results: 235 questionnaires were returned (150 Schedule for Meaning in Life Evaluation (SMiLE) has Preliminary results of this study indicate that non- physicians, 85 head nurses; return rates 38% and 71%, been developed to assess this highly individual pathological, commonly experienced ambivalence is an resp.). The results show a clear lack of knowledge in all construct, and was validated with a student sample as integral part of personal preparations for dying. Both areas. The following percentages of respondents well as a representative sample of the German patients’ and caregivers’ narratives indicate practical wrongly indicated that physicians are legally required to population. Data from palliative patients are contrasted meanings and roles that ambivalence can have. Based administer fluids to terminally ill patients: general with the normative data. on this we try to explain how these existential conflicts practitioners 56%, hospital physicians 39%, hospital Methods: Participants are asked to name 3-7 meaning- are related to or caused by conflicting normative head nurses 92%, outpatient head nurses 37%, nursing providing areas. Each area is rated by the patient in expectations within a texture of social interactions. home head nurses 37%. The overall difference between terms of its importance and current level of satisfaction. Conclusions: physicians (48%) and head nurses (69%) is significant Indices of importance (range 20-100), satisfaction (0- (i) Two aspects of ambivalence can be distinguished: (p=.004). Similar results were found for the other 100), and weighted satisfaction (SMiLE-index, 0-100) subjective (conflicting moral claims on a personal treatments (% of wrong positive responses): nutrition, are calculated. The named areas are grouped into 13 sessions level) and structural (presumed social expectations). physicians 14% vs. head nurses 22%, n.s.; content categories, derived from analysis of the (ii) Better understanding the ethical meaning of hospitalization for bleeding, 27% vs. 65%, p<.001; representative data. ambivalence improves the care for persons with an hospitalization for ileus, 39% vs. 71%, p<.001; CPR, 8% Results: 100 patients completed the interview and ambivalent wish to die. vs. 28%, p<.001; oxygen, 40% vs. 64%, p=.001; pain named on average 5.3±1.6 meaning-providing areas. Free communication Free Funding: Oncosuisse/Swiss Cancer League, Bangerter- treatment, 86% vs. 91%, n.s. The index of satisfaction was 70.2±19.7, the index of Rhyner-Stiftung. Conclusions: There are widespread uncertainties with importance 84.7±11.5, and the SMiLE index 72.0±19.4. respect to ethical and legal obligations during the The representative sample (N=977) named fewer terminal phase. To address this major problem in meaning areas (3.8±1.4, p<.001), and showed higher FC 08.4 palliative care practice, improved education in palliative levels of satisfaction (82.8±14.7; p<.001) and weighted care, and competent hospital and outpatient support satisfaction (83.3±14.8; p<.001). Palliative patients were Medical futility at the end of life as perceived by teams are needed. more likely to name partnership, nature, and intensive-care and palliative-care clinicians spirituality as meaning-providing areas, while the general population was more likely to name work and Jox R J1, Schaider A1, Borasio G D1 FC 08.6 health. While palliative care patients were as satisfied as 1University Hospital Munich, Interdisciplinary Center their healthy counterparts with family, partnership, for Palliative Medicine, Munich, Germany Legal practice of euthanasia in Belgium. Analysis and spirituality, they showed lower levels of satisfaction and interpretation of the last three years with health, hedonism, and work. Aims: Medical futility at the end of life ranks among registration documents and the experience of a Conclusion: Palliative care patients name more the most difficult challenges of medicine. Empirical supportive care unit meaning-providing areas than the general population, data on the topic is scant. Our goals were to elucidate but are overall less satisfied with them. New methods how clinicians in palliative care and intensive care Lossignol D A F1, Englert M2, Razavi D3, Obiols M1, Meunier are needed to help palliative patients to safeguard their define medical indication and when they perceive life- J3 MiL. The SMiLE can be used as a tool to identify sustaining treatment (LST) to be futile. We also wanted 1Institut Jules Bordet, Supportive Care, Bruxelles, individual meaning-providing areas, which can then to know how they communicate futility and why LST is Belgium, 2Federal Commission, Bruxelles, Belgium, form the basis for targeted interventions to improve often continued despite being futile. 3Institut Jules Bordet, Psycho Oncology, Bruxelles, subjectively perceived MiL. Methods: We conducted semi-structured interviews Belgium with 18 physicians and 11 nurses from palliative and intensive care units. The transcripts were analyzed The Belgian law relative to euthanasia prescribes that a FC 09.2 according to Qualitative Content Analysis. physician performing an euthanasia has to complete a Results: The definition of medical indication posed registration document to the Federal commission for Communication on spirituality and religion by difficulties. It was mostly associated with the presence control and evaluation of euthanasia. We analyse 924 doctors in palliative medicine - a questionnaire of “reasonable” and “meaningful” goals of care that reports from January 2006 and December 2007.The based study in the UK and Ireland offer the patient a benefit regarding quality of life. This most frequently reported diagnosis remains cancer in benefit, however, should be proportionate to the risks, 81% of cases and neuromuscular illness in 9%, in 80% Mason L D1 harms and costs. Clinicians did not see an indication of cases, the age of the patients is between 40 and 79. 1Kings College Hospital, Department of Palliative Care, for LST (futility) in the following situations: irreversible The place where euthanasia was performed is: 49% at London, United Kingdom dependance on LST, advanced metastatic malignancies home (by a general practitioner :45%) and 50% in a and fatal brain injuries. Physicians and nurses agreed hospital. The method used in more than 90% of cases is Aim: To better determine the influences on Palliative that the indication should be assessed by the treating an intravenous injection inducing unconsciousness Medicine Physician (PMP) communication on spiritual physicians after consultation with the care team. followed, if needed, by an intravenous injection of a and religious issues. Previous U.S. studies suggest several Intensive care clinicians favoured disclosing the neuromuscular relaxant. Euthanasia requests were factors that can influence doctors’ communication on prognosis in a stepwise fashion. Palliative care mostly related to severe dyspnea, GI occlusion, lost of spiritual and religious issues, but the attitudes and

46 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Free communication sessions practices regarding such communication has not been Rehabilitation, London, United Kingdom, 2Hospice 2. The anticipated suffering overlays the present state of specifically studied among PMPs. Africa Uganda, Kampala, Uganda, 3Witwatersrand being. Method: A questionnaire was posted to all 828 PMPs Palliative Care, Johannesburg, South Africa, 4African 3. The content of the anticipated pictures interferes registered with The Association for Palliative Medicine Palliative Care Association, Kampala, Uganda, 5South with basic self concepts. of Great Britain and Ireland. The questionnaire, Coast Hospice, Port Shepstone, South Africa, 6Hospice These hypotheses are elements in creating a theory developed with an expert Advisory Panel, consisted of Palliative Care Association of South Africa, Cape Town, about the desire to hasten death in patients receiving 24 items employing tick-box responses, Likert scales South Africa, 7University of Cape Town, Cape Town, inpatient palliative care. Next step is to integrate and and 0-10 rating scales. South Africa, 8Philanjalo Hospice, Tugela Ferry, South differentiate these suggestions with respect to other Results: The overall response rate was 72% (599). The Africa, 9Infectious Diseases Institute, Kampala, Uganda, results of the study. % of PMPs who rated spiritual and religious inquiry as 10Msunduzi Hospice, Pietermaritzburg, South Africa important was high (95% and 84% respectively). PMP This study is supported by a grant of the Deutsche self reported rates of spiritual inquiry were “often” 50% Context: Increasing numbers of African nationals are Forschungsgemeinschaft (DFG, 350253). and “sometimes” 38%; religious inquiry was “often” migrating to EU countries (>2.25 million in 2003). 40% and “sometimes” 37%. PMPs rated comfort in Spiritual support is a key component of palliative care, discussion on the higher end of a 0-10 rating scale but meeting policy guidance has been hindered by a FC 09.6 (median scores of 8). Comfort scores were poorly lack of understanding of spiritual needs among correlated with frequency of inquiry into spiritual and immigrant populations. Older people with a wish to die religious concerns (r=0.48 and r=0.41 respectively). If Aim: To investigate the spiritual beliefs and needs of spiritual concerns were not discussed, influences palliative care patients in sub-Saharan Africa (SSA), and Rurup M L1, Deeg D J2, Poppelaars J L3, Kerkhof A J4, included patient preference (66% c.f. 61% for religious inform service provision in SSA and Europe. Onwuteaka-Philipsen B D1 concerns) and lack of time (44% c.f. 34% for religious Methods: Cross-sectional, semi-structured qualitative 1VU University Medical Center, EMGO Institute, Dept of concerns). In PMPs who classified themselves as interviews with a purposive sample of patients recruited Public and Occupational Health, Amsterdam, “religious”, there was a poor but significant correlation by research nurses at 4 palliative care sites (3 South Netherlands, 2VU University Medical Center, EMGO between self reported importance of personal religion African, 1 Ugandan). Interviews were recorded, Institute, Dept of Psychiatry, Amsterdam, Netherlands, and inquiry frequency into spiritual (r=0.13 p=0.002) transcribed and translated into English for thematic 3VU University Medical Center, EMGO Institute, Dept of and religious (r=0.19, p<0.0001) issues; similar findings content analysis. Sociology, Amsterdam, Netherlands, 4VU University were found with comfort scores for discussing spiritual Results: 72 patients were interviewed in 7 languages Medical Center, EMGO Institute, Dept of Clinical (r=0.14, p<0.0001) and religious issues (r=0.23, (Zulu, English, Xhosa, Luganda, Runyoro, Sotho, Psychology, Amsterdam, Netherlands p<0.0001). Tswana). Mean age 45.1 (SD 15.9); 48 (66.7%) were Conclusion: This is the first large scale study to female; 29 (40.3%) had cancer; 43 (59.7%) were HIV+. Aim: The aim of this study is to determine the explore PMPs attitudes and practices for >20 different Christian denominations were reported. prevalence of death ideation among older people in the communication on spiritual and religious issues. There Intrinsic aspects of faith (e.g. personal prayer) and Netherlands, and to determine the association of death was a high response rate, the vast majority viewing extrinsic aspects (church attendance, ‘revivals’ in ideation with depressive symptoms and other possibly spiritual and religious inquiry as an important part of hospital) were described. Syncretism with traditional relevant factors. their clinical practice. ancestral beliefs was reported; a minority were non- Methods: In the Netherlands 1794 people aged 58-98 Christian (Muslim, Hindu, spiritual but not religious, years were interviewed at their home in 2005/2006 atheist). Faith helped provide peace, hope and (Longitudinal Aging Study Amsterdam). FC 09.3 acceptance of disease; however, spiritual crises were also Results: 81.3% of the respondents said they had never described (disillusion with the church, bitterness had death thoughts or wishes; 15.3% said they had had Prediction of physicians’ ability to detect towards God, questioning one´s faith). Uncontrolled such thoughts or wishes; 3.4% said they currently had a patients’ distress pain, social rejection and family worries were barriers to wish to die or had only a weak or no wish to continue spiritual peace. Some patients saw their doctors as living. Meunier J1, Merckaert I1, Bragard I1, Delvaux N1, Etienne A- spiritual guides. People who had a current wish to die had clinically M1, Liénard A1, Reynaert C1, Slachmuylder J-L1, Marchal S1, Conclusion: For patients in this study, illness relevant depressive symptoms (CES-D≥16) in 68% of Razavi D1, Lossignol D A F2 experiences were mediated through spiritual faith and the cases (vs. 32% of people with death ideation ever; 1Institut Jules Bordet, Psycho Oncology, Bruxelles, practice. Given migration trends it is vital to 9% of people who never had death ideation), but Belgium, 2Institut Jules Bordet, Supportive Care, understand the needs of African patients, for whom actually suffered from a depressive disorder (DIS Bruxelles, Belgium spirituality is likely to be key to quality of life. interview) in only 20% of the cases (vs. 5% if death Recommendations are made for service providers in ideation ever; 0.3% if never death ideation). To test the hypothesis that physicians’ characteristics Europe and SSA, e.g. proactive discussion of faith, In a multivariate analysis a current wish to die was (socio-demographic, professional and psychological) access to African faith leaders, staff training. associated with having depressive symptoms, a and interviewing skills in a highly emotional simulated depressive disorder, a speech impairment, a visual patient interview (communication skills, psychological impairment, being divorced or widowed, and having a stress and physiological stress) may predict physicians’ FC 09.5 smaller network. Furthermore, in people aged 58-70 ability to detect patients’ distress accurately. years, financial problems, experiencing pain and recent Physicians’ detection of patients’ distress was assessed The desire to hasten death as a function of life-events were associated with a wish to die, in people during a half-day of actual patient interviews. reducing psychological distress ≥70 years, loneliness and involuntary urine loss were sessions Physicians’ socio-demographic, professional and associated. psychological characteristics were assessed by Pestinger M1, Stiel S2, Krumm N2, Widdershoven G3, Nauck Conclusion: It seems there are two different subgroups questionnaires. In a highly emotional simulated patient F4, Voltz R5, Radbruch L2 of older people with a wish to die: people who have a interview, physicians’ communication skills were 1University Hospital RWTH Aachen, Department of (subthreshold) depressive disorder, and people who analyzed utterance by utterance according to a Palliative Medicine, Aachen, Germany, 2University have other reasons for having a wish to die. This communication Free specifically designed software (LaComm), physicians’ Hospital Aachen, Department for Palliative Medicine, distinction can be relevant for further research and for psychological stress was assessed by questionnaires and Aachen, Germany, 3University of Maastricht, Care and health care professionals. The practical implication for physicians’ physiological stress was assessed through Public Health Research Institute, Maastricht, health care professionals is that a wish to die does not heart rate and blood pressure recordings. Netherlands, 4University Hospital, Department for necessarily mean that someone has a depressive Ninety-four physicians and 442 inpatients were Palliative Medicine, Göttingen, Germany, 5University disorder, but it should be a trigger to investigate included. Thirty percent of the variance in physicians’ Hospital, Department for Palliative Medicine, Cologne, whether this is the case, and treat depression if present. detection of patients’ distress in actual patient Germany interviews was explained by some physicians’ interviewing skills recorded in the highly emotional Background: The desire to hasten death of terminally simulated patient interview: physicians’ self-reported ill patients is receiving more and more attention in FC 10 Organisation of Services anxiety level before task (r=-.21; p=.040), physicians’ palliative care literature. This study wants to decode the mean arterial blood pressure level before task (r=-.26; communicative function and aims to identify the p=.019), physicians’ mean heart rate during task (r=-.21; patients’ expectations towards their caregivers. The first FC 10.1 p=.043), physicians’ use of empathy during task (r=.23; step of the project is to map psychological processes of p=.027) and the evolution in physicians’ mean arterial patients with a desire to hasten death. Access and referral to palliative care in seven blood pressure between pre-task rest and post-task (r=- Methods: Patients from the palliative care units in European countries, an EU perspective .27; p=.012). Aachen, Bonn and Cologne who report a wish to die or Physicians’ ability to stay empathic in a highly ask for physician-assisted suicide are questioned about Ahmed N1, Ahmedzai S H1, Engels Y2, Gomez-Batiste X3, emotional simulated patient interview and physicians’ their perceived reality with an open, semi-structured Hasselaar J2, Jaspers B4, Mollard J-M5, Klaschik E4, Leppert ability to manage their stress before, during and after interview guideline. Interviews are audiotaped and W6, Menten J7, Noble B1, Paz S8, Vanbeek K7, Woitha K2, this task predict their ability to detect patients’ distress transcribed verbatim. Attitudes towards life and death Vissers K2 accurately in their clinical practice. Future training and their biographic contexts are central aspects of the 1University of Sheffield, Academic Unit of Supportive programs focusing on distress detection should be interview. Seven patients have been interviewed so far. Care, Sheffield, United Kingdom, 2Radboud University aimed at helping physicians improve these two abilities. Grounded Theory was used for analysis. Nijmegen Medical Centre, Department of This procedure will be used in context of end-of-life Results: The most common category was avoidance of Anesthesiology, Pain and Palliative Medicine, decisions. agony. Within this category patients´ statements Nijmegen, Netherlands, 3Institut Catala d’Oncologia, describing powerful inner pictures of fright were Barcelona, Spain, 4University of Bonn, Department of summarized. Patients´ statements were e. g. “I see Science and Research in Palliative Medicine, Bonn, FC 09.4 myself starving”, “dying process is lying around for Germany, 5Reseau Ensemble, Paris, France, 6University months” or “I’m afraid of dying in agony, crying and of Medical Sciences, Department of Palliative Medicine, Providing spiritual care in multi-cultural screaming”. All these thoughts are characterized by Poznan, Poland, 7University Hospital Leuven, Europe: Meeting the needs of African patients anticipating and constructing future states of one self. Radiotherapy-Oncology, Leuven, Belgium, 8Universitat The desire to hasten death is reported as a attempt to Jaume I, Modulo Departemental T1, Castelló de la Selman L1, Harding R1, Agupio G2, Dinat N3, Downing J4, avoid anticipated future states of one self. Plana, Spain Gillespie C5, Gwyther L6, Mashao T7, Mmoledi K3, Moll T8, Conclusions: Several hypotheses are generated: Mpanga Sebuyira L9, Panajatovic B10, Higginson I J1 1. Patients with high availability of scaring pictures Background: Palliative care may not be reaching all of 1King’s College London, Palliative Care, Policy & anticipate high emotional distress in their future. those that could benefit from it. There is an urgent

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 47 Free communication sessions

need to evaluate and improve access and referral to important role in determining where patients die.. Conclusion: Information and educational strategies, palliative care and to identify the barriers or incentives Better understanding of these factors would inform will improve aspects of after hours care. These resources to providing and receiving palliative care. In evidence-based health policies aimed at increasing will utilise already existing websites and educational cooperation with 7 participating partner organisations patients’ chances of dying at home. programs for medical and nursing professionals, so in 7 European countries (Belgium, England, France, enhancing their knowledge of the provision of after- Germany, Netherlands, Poland, and Spain) an hours care. international study is being undertaken in order to FC 10.3 describe ‘best practices in palliative care’ and to develop quality indicators. A survey among Austrian oncologists about their FC 10.5 Aims: To describe and compare access and referral attitudes towards palliative care for patients (barriers and incentives) to palliative care in seven with primary metastatic cancer What keeps a palliative medicine physician so European countries. busy with patients? Time expenditure in Methods: Experts in each country were asked to Kierner K A1, Hladschik-Kermer B2, Bartsch R2, Gartner V2, palliative care complete an inventory. A review of the literature was Hassler M2, Watzke H2 also undertaken by researchers in each country. 1Medical University of Vienna, Department of Medicine Spoon A S1, Centeno C2, Rodriguez J3, Ros W4 Results: Data has been collected and will be presented I, Vienna, Austria, 2Medical University of Vienna, 1University Medical Center Utrecht, Utrecht, for all seven European countries. In the UK several Vienna, Austria Netherlands, 2Universidad de Navarra, Palliative barriers to access and referral to palliative care were Medicine Unit, Pamplona, Spain, 3Universidad de identified including lack of knowledge and education Aim: Cooperation between oncologists and palliative Navarra, Oncology Department, Pamplona, Spain, amongst health and social care professionals, and a lack care physicians is essential for continuity of care of 4University Medical Center Utrecht, Department of standardized referral criteria. Some groups of people patients with cancer. Attitudes towards palliative care Nursing Medicine, Utrecht, Netherlands failed to receive timely referrals e.g. those from services and issues has not been investigated in Austrian minority ethnic communities, older people and oncologists. Palliative care physicians seem to spend a lot of time patients with nonmalignant conditions as well as Methods: we performed a survey among 785 medical, seeing a small number of patients. What do they do people that are socially excluded e.g. homeless people. surgical and gynaecological oncologists in Austria in with that time? There has been little relevant Conclusions: There is a need to improve education which we presented the clinical course of a patient with information in published literature. We carried out a and knowledge about specialist palliative care and primary metastatic breast cancer from diagnosis until pilot study aimed at presenting the differences in hospice care amongst health and social care death. Oncologists were asked to indicate at what point clinical time spent among physicians working in a professionals, patients and carers. Standardized referral in time they would involve palliative care services and Palliative Care Unit (PC) and in a Medical Oncology criteria need to be developed. Further work is also hospice services and when they would inform the Department (MO) at a teaching hospital. needed to assess the needs of those not currently patient about incurability of her disease and her An external observer carried out exhaustive tracking, accessing palliative care services. A set of indicators will reduced life-expectancy and about the possibility to firstly of two PC physicians, members of a consultation be established and used to assess palliative care, define issue an advance directive. team, and later of three MO physicians, members of the best practices and compare specific aspects of the Results: The majority of 176 responding oncologists gastrointestinal-oncology team. Over a number of palliative care provided both within and across the would involve palliative care services when the patients working days, the distribution of working time was seven European countries. Karnofsky index (KI) was >50 and hospice services when noted with patients, with families, with other Funding: EU supported via the PHEA (Public Health the KI was > 40. Special training in palliative care was physicians, with nurses on the ward, team work, Executive Agency) in 2007. significantly associated with an early-on use of hospice checking records, prescribing medication, walking or services. Reasons for not involving palliative care and waiting and other tasks. Non-clinical time, research, hospice services earlier than indicated were teaching, others, was excluded from the clinical time. FC 10.2 systematically evaluated and included among others Over six days, we observed 47 hours of working time for “fear to destroy patient’s hope” (36% palliative care, 57% MO and 44 hours for PC. Both physicians spent 39 Which cancer patients die at home? A study of hospice). Sixty seven percent of participating oncologists hours on clinical time, which they divide in an almost six European countries using death certificate would inform the patient about her prognosis and life identical fashion. PC physician attended 40 patients data expectancy at the time of diagnosis while issuing an AD and the MO physician 79 patients. The time spent with was brought up by 25% at that time. each patient was 20.4 min for PC and 11.6 min for MO. Cohen J1, Houttekier D1, Onwuteaka-Philipsen B2, Miccinesi Conclusion: Our data show, that oncologists involve Time expenditure for PC was significantly longer for PC G3, Addington-Hall J4, Kaasa S5, Bilsen J6, Deliens L7 palliative care services at an advanced stage of patients than MO: ‘talking with team members’ 11.8 vs. 4.8 1Vrije Universiteit Brussel, End-of-Life Care Research with primary metastatic cancer and deliver information min, ‘talking with other physicians’ 3.2 vs. 1.0, Group, Brussels, Belgium, 2VU University Medical on incurability of disease rather early on. ‘changing or prescribing medication’ 2.9 vs. 0.9 and Center, Department of Public and Occupational Health, ‘walking’ or ‘waiting’ 7.5 vs. 1.5. PC dedicated almost EMGO Institute, Amsterdam, Netherlands, 3Centre for three times as much to talking with nurses. Study and Prevention of Cancer, Toscany, Italy, FC 10.4 PC showed different clinical time expenditure per 4Southampton University, School of Health Sciences, patient compared to MO, which might be described as Southampton, United Kingdom, 5Norwegian University What happens after dark? Improving “after more ‘intensive’ care because it results in longer periods of Science and Technology, Trondheim, Norway, 6Vrije hours” palliative care planning in urban and of time devoted to a single patient and as a result, fewer Universiteit Brussel, End-of-Life Care Research Group; rural Australia, for patients, their carers and patients were seen. sessions Ghent University, Bioethics Institute, Brussels, Belgium, health professionals 7Vrije Universiteit Brussel, End-of-Life Care Research Group; VU University Medical Centre, EMGO Institute, O’Connor M1, Miles G2, Klein B3, Schattner P4, Tan H1 FC 10.6 Brussels, Belgium 1Monash University, Palliative Care Research Team, Free communication Free School of Nursing & Midwifery, Melbourne, Australia, Death and the team - How many patient deaths Background: To enable dying at the place of wish we 2Royal District Nursing Service, Victoria, Melbourne, can they bear and how do they cope? A need to know which patients are dying where and for Australia, 3Swinburne University of Technology, Faculty nationwide survey into palliative care units in what reasons. This study aims to examine the of Life and Social Sciences, Melbourne, Australia, Germany proportion of cancer deaths occurring at home in six 4Monash University, Department of General Practice, European countries in relation to illness, demographic, Melbourne, Australia Mueller M1, Pfister D1, Markett S1, Jaspers B2 and healthcare factors. 1ALPHA Rhineland, Bonn, Germany, 2University of Methods: We analyzed death certificate data of all Aim: This three year project, funded by the Bonn, Centre for Palliative Medicine, Malteser Hospital cancer related deaths in 2002 in Italy and 2003 in Department of Health and Ageing has four main aims: Bonn/Rhein-Sieg, Department Science and Research in Belgium, The Netherlands, Norway, England, and to investigate current after-hours palliative care in rural Palliative Medicine, Bonn, Germany Wales (N=231,276). Data were linked with regional and urban Victoria; to develop strategies to enhance healthcare statistics and area characteristics. after-hours palliative care planning; to test and evaluate Aim: Working in palliative care (PC) means working in Multivariate binomial logistic regressions were these developed strategies; and to make an environment where a non-normative frequency of performed to examine factors associated with dying at recommendations to support policy and practice experience with death and dying is a normative event home. development. of the everyday working life. It can be hypothesised Results: The proportion of all cancer related deaths Methods: The study was conducted in 3 phases. In that the particularly empathic accompaniment of occurring at home, ranged from 12.8% in Norway to phase 1 a total of 38 interviews were conducted with patients adds to stress and the experience of loss. 45.4% in the Netherlands. Type of cancer and being general practitioners, palliative care nurses and Research into this subject has been lacking. The aim of married influenced the probability to die at home in recipients of care in three general practice areas, the study was to explore the number of patient deaths a the same way in all countries. Older age and being incorporating both urban and rural areas. These were team can bear, stress and coping factors. female were associated with lower odds of dying at thematically analysed and identified many workforce Methods: Development of a standardised 11-item- home, except in Italy where the opposite was the case. issues. These findings were then used to construct a questionaire (Q) (focus group); pre-test in 2006 (4 A higher educational attainment (not available in the wide-ranging survey sent to nurses (125) and GPs (525) palliative care units (PCU). The Q was sent to all PCU in Netherlands, England, and Wales) was in all countries for phase 2. Drawing on the results of both phases 1 Germany (158); survey from 12/07-04/08, reminder. and a less urban municipality of residence in all and 2, phase 3 has involved the development, trial and Descriptive and variance analysis, post hoc (Fisher’s countries but England associated with better odds of evaluation of information and educational resources to LSD) and Chi2 testing; significance level 0.05; principal dying at home. Number of hospital and care home beds enhance aspects of support for after hours care. components analysis, varimax rotation, 2-step cluster seemed not to be universally strong predictors of dying Results: All data were analysed and identified analysis. at home. significant challenges in after-hours care. Major Results: Response rate 60% (95 PCU); (n=873; nurses Discussion: There are large differences between workforce issues identified in phase 1 and supported by (N) 652, physicians (P) 99, social workers 20, countries in the proportion of cancer patients dying at phase 2 data included: access to palliative care training, physiotherapists 19, pastors 18, other 45, no entry 20); home. Cancer type and marital status had the same information about relevant Medicare items, advanced 78.6 female. Critical number of deaths/week 4.4±2.5. effect in all studied countries, and may be less care planning issues, shortage of appropriately trained Consecutive deaths (00DDD00) were rated more amenable to policy interventions. The fact that the staff for after-hours on-call services, staff safety, stressful than evenly spread deaths (0D0D0D0). effects of factors such as age, sex, educational level and availability of GPs after-hours and multi-disciplinary Greatest stress factor: not to have fulfilled the standards level of urbanization varied considerably between team communication issues. Some of these issues have of PC (51.0%). Cluster analysis: 3 groups - severely countries suggests that country-specific cultural, social, been addressed in the information and educational (34.5%), moderately (37.9%) and not burdened and health care organizational factors play an resources developed. (27.6%). Factors and composite measures: relationship

48 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Free communication sessions

2.4, stress 2.1, responsibility 2.1. P were significantly 2) a measure of the ‘vitality’ of palliative care in a and palliative care experts with regard to similar topics. more stressed by responsibility than others country, based on such factors as the existence of a Based on the results, we develop a semi-standardised (F(5.730)=3.77; p=.002), women more than men by national association, directory of services, physician interview guide for a 2-stage Delphi study (timeframe stress (F(1.763)=17,64; p<.001). Symptoms of a accreditation, people attending congresses, 11/2008-03/2009). 15 outstanding national experts burdened team: loquacity (38%), irritability (28.6%), publications on palliative care development. from the academic disciplines of public health and inter-professional tension (23.7%). P rated supervision Results: In the EAPC Ranking the United Kingdom palliative care are recruited for participation. Using a ((F(5.833)=4.79; p=<.001) more helpful for coping than attained the highest overall score. Countries with 85- quantitative and qualitative mixed methods design, the N; N mostly opted for distraction (F(5.841)=9.54; 50% of the UK score were (in descending order): first round focuses on the question: What public health p=<.001) and humour (F(5.841)=4.78; p=<.001). The Ireland, Sweden, Netherlands, Poland, France, Spain, targets for palliative care arise from the survey findings? most important coping resource: the team (96%) itself. Germany, Belgium, Luxemburg, Austria, Italy, Data will be analyzed and summarized for the second Conclusion: This study gave first insights into an Denmark, Finland and Latvia. Countries with 50-25% Delphi round with the same participants. At this stage unexplored matter; a follow-up study in inpatient were (in descending order): Lithuania, Hungary, the focus will be on the relevance and priority of the hospices is planned. Bulgaria, Czech Republic, Slovenia, Cyprus, Romania, identified targets. Malta, Greece, Portugal, Slovakia, Estonia. Results: The methodical approach as well as the results Conclusions: This emergent approach to ranking has from the first Delphi round and partial results from the considerable potential. Key challenges are: second round will be presented at the EAPC-Congress. FC 11 Policy 1) refining the quality of data used to compose the Conclusion: For the first time in Germany, broadly ranking based public health targets for palliative care will be 2) moving to an absolute, rather than a relative system developed. The results can be introduced into the FC 11.1 of ranking. currently initiated national Charta process concerning This work is continuing in the Task Force. better care for seriously ill and dying patients. EAPC ESMO collaborative study of the the Funding: The study is funded by the German Research availability and accessability of opioids for Foundation (DFG). cancer pain in Europe FC 11.3

Cherny N.1, De Conno F. 2, Radbruch L3, ESMO EAPC Implementation of graded palliative care within FC 11.5 Collaborative Research Initiative the public health care system in Austria - 1Shaare Zedek Medical Center, Cancer Pain and strategies and perspectives Integrated oncology and palliative care (IOP): Palliative Medicine, Jerusalem 2Istituto Nazionale Dei The ESMO designated centers’ experience and Tumori, Milano, Italy, 3University Hospital Aachen, Werni-Kourik M1, Pelttari-Stachl L2, Nemeth C3 developments Palliative Care, Aachen, Germany 1Austrian Society for Palliative Care, Vienna, Austria, 2Hospice Austria, Vienna, Austria, 3Gesundheit Cherny N.1, Kloke M.2, Strasser F3, ESMO Palliative Care It is widely recognized that there are major problems Österreich (Austrian Health Institute), Vienna, Austria Working Group with opioid availability and accessibility across Europe, 1Shaare Zedek Medical Center, Cancer Pain and and, as a consequence, many patients are suffering. In a Aims: After intensive discussions between palliative Palliative Medicine, Jerusalem 2Kliniken Essen Mitte, collaborative effort national representatives of ESMO care consultants and responsible politicians palliative Essen, Germany 3Oncological Palliative Care Medicine, and EAPC were asked to report on the availability and care was integrated into the Austrian Health System in Oncology & Palliative Care Center, Cantonal Hospital accessibility of opioids in their countries using a 2000. Further more the Ministry of Health and the St.Gallen, St.Gallen, Switzerland structured questionnaire. The data was tabulated and Governors of the nine provinces in Austria have made it cross correlated. When discrepant data was reported a priority to establish palliative and hospice care Aim: The application of palliative care principles and from the different national representatives of a single country-wide. In this study we tried to describe the competencies to the whole trajectory of disease country efforts were made to clarify specific development of a general plan for all parts of a graded demands a high level of integration between oncology outstanding questions. Data from over 40 countries will palliative care system and how many services providing and palliative care. We will describe the ESMO be presented; this will include a detailed map of opioid palliative care have been established in Austria. experience with an incentive program which availability across Europe. Major preliminary findings Methods: 2004 members of the hospice and palliative recognizes designated centers (DC) of integrated include: care movement in Austria developed a concept for a oncology and palliative care. 1. Limitations in opioid supply to 14 days or less is very graded palliative care system supported by “Gesundheit Methods: A cross-sectional semi-structured survey of common in countries if the Former Soviet Union (FSU). Österreich” (Austrian Health Institute). The main goal all DCs (2.2008: n=27) was conducted about 2. In many European countries physicians are not was to establish adequate palliative care for inpatients 1) the stimulation of service development (preparation allowed to prescribe opioids on an “as needed” or PRN and outpatients all over Austria by 2012. The working of application, new services since ESMO DC), basis. group defined six different graded palliative care 2) the recognition (impact in daily work, business 3. Some countries require that the physician acquire services and established guidelines for the number of activity, funding of projects, national role and center special permit or license for a patient to receive an services, staffing requirements, as well as size and identification), and opioid prescription. structures for each. 3) the appropriateness of the 13 criteria for DC to guide 4. Some countries require that physicians receive a Results: Since integrating palliative care within the the integration process across various European cancer special permit or license to prescribe opioids. National Health Plan, there are a growing number of settings. A descriptive categorization and 5. Most countries require that opioid prescriptions be new palliative care services all over Austria. By the end semiquantitative analysis was made. sessions written on special forms (Triplicate or duplicate) and in of 2007 228 services have been established: 24 palliative Results: Of 27 centers, 24 responded (89%). 2 centers some countries accessibility to special prescription care units, 6 inpatient hospices, 2 day hospices, 30 developed IOP before DC application, 19 developed forms is difficult or limited and is a small number of hospital palliative care support teams, 31 home various new services, in 12 the DC improved daily work countries the physician must purchase the forms. palliative care teams and 135 mobile volunteer hospice (referrals, shared-care, continuity of care, peers’ service 6. In many states of the FSU opioids can only be teams. However more hospital palliative care support recognition), in 11 the business activity, in 6 funding, communication Free dispensed at designated pharmacies that may be either teams, inpatient hospices and day hospices are still and in 17 recognition. The survey revealed a need for in hospitals or special regional centers depending on needed. In total approximately 440 services are needed both local regulations. in order to provide palliative care all over Austria. 1. more specific application criteria (assuring 7. Very few countries will allow telephone orders by a Conclusion: Close co-operation between members of operationalisation of key palliative care principles and physician to a pharmacist in case of an emergency or palliative care organizations and politics was necessary competencies) and correction of a technical error on a prescription by the to integrate palliative care into the health system. After 2. flexibility for regional and cultural differences of the pharmacists (at the physician direction). developing a nationwide plan and guidelines an integrative process (reaching from supportive care, to increasing number pf palliative care services have been anticancer treatment in palliative intention to end-of- built up in Austria. Country-wide graded palliative care life and bereavement care). FC 11.2 will most likely be available by 2012. The second generation of DC criteria will apply for 2009 DC applications. A ranking system for palliative care development Conclusion: The designated center incentive program in Europe: Proposals from an EAPC Task Force FC 11.4 has succeeded in stimulating program development of integrated oncology and palliative care. The ESMO DC Centeno C1, Clark D2, Lynch T2, Martin-Moreno J3, EAPC Developing public health targets for palliative process may serve as a model for incentive driven Task Force on the Development of Palliative Care in Europe care in Germany: A Delphi study program improvement. 1Universidad de Navarra, Clínica Universitaria, Pamplona, Spain, 2Lancaster University, School of Behmann M1, Lückmann S L1, Schneider N1 Health and Medicine, Lancaster, United Kingdom, 1Medical School Hannover, Epidemiology, Social FC 11.6 3Universidad de Valencia, Departamento de Medicina Medicine and Health System Research, Hannover, Preventiva y Salud Publica, Valencia, Spain Germany Consultation time in Palliative Care: A preliminary study. Background: In 2006 the Task Force produced the Aims: Improving palliative care is a public health first EAPC Atlas of Palliative Care in Europe and began priority, but so far it has been largely disregarded in Vignaroli E1, Mammana G1, Bunge S1, Bertolino M1, Vega to work in more detail on the production of indicators Germany. Therefore, within a larger research project we F1, Aranda L1, Peirano G1, Wenk R1 of palliative care development that could be applied perform a Delphi study in order to develop public 1Programa Argentino de Medicina Paliativa. Fundación across national settings. In 2008 the Task Force health targets for better palliative care in Germany. FEMEBA-Hospital Tornú, Buenos Aires, Argentina collaborated on a project commissioned by the Methods: In the first project phase (04-08/2008) a European Parliament concerned with the development standardized survey took place including 442 Background: Consultation includes identification of of palliative care in the member states of the European stakeholders from the meso and macro level of the patients needs, decision on their priority, and provision Union. German health care system (e.g. medical associations, of care to meet the needs. Different studies have Aim: To develop a ranking of palliative care nursing organizations, cost units, political institutions, examined the consultation time and its determinants development in the members states of the European patient organizations). The survey addressed three in various disciplines. In palliative care - a discipline Union. main topics: awareness of palliative care, hindering / with a distinctive interaction between health Methods: The ranking uses two kinds of indicator: facilitating factors, assessment of potential professionals, patients and families - the consultation 1) volume of specific palliative care resources and improvements. In addition, we performed a qualitative process is time consuming; therefore it is essential to services per million population assessment of the views of international public health explore the relation between consultation time, its

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 49 Free communication sessions

determinants, its appropriateness and the quality of difficult due to certain peculiarities. To quantitatively FC 12.4 care. assess Barriers to Palliative Care Research (B-PC-R) in Aim: To measure consultation times in different Switzerland. Using two pairs of eyes: Applying simple visual palliative care settings. Methods: The questionnaire B-PC-R (EAPC 2006, techniques systematically and reliably to Methods: During a three week period, physicians of an #467) includes 5 main categories (ethical, financial and improve understanding of symptom changes academic palliative care unit (PCU) were request to time resources, methodological, planning and over time measure the time they and the patient or their families conducting a study, politics) and 31 subcategories. It were together in the room; interruptions were took was sent (in the 3 swiss languages) anonymized to Murtagh F E M1, Bausewein C1, Higginson I J1 away from consultation times. First time consultation members of palliative-ch with 1 written reminder. 1King’s College London, Department of Palliative Care, (FTC), follow up visit (FUV), family advice (FA), and Results: Of 1681 B-PC-R 1003 (63%; 444, reminder Policy & Rehabilitation, London, United Kingdom family interviews (FI) were measured in outpatient 559) were returned: 188 physicians, 618 nurses, 176 clinic (OPC), acute PCU (APCU), general ward (GW) other professions, and 21 not specified. 71% were Background: Symptoms in palliative care are often and emergency room (ER). women, 22% were <40 years and 9% >60 years. From dynamic rather than static. But much prospective Results: 278 consultation times were measured. In all the german speaking part were 61%, french 32%, and palliative research is cross-sectional and provides settings, mean time in FTC (n=20) was 37 min. (8-80), italian 7%. 160 (52 physicians, 71 nurses) were involved limited insight into change over time. The often small in FUV (n=211) was 22 min. (3-115), in FA (n=4) was 43 in the last 5 years in research, another 393 are numbers in palliative studies also constrain use of min. (20-65) and in FI (n=43) was 27 min. (8-95). interested. Key barriers were lack of time (35, 56), lack formal longitudinal analysis techniques, such as multi- Differences: (a) for FTC, in OPC (n=8) 47 min. (13-80), of money (18, 40), and of human ressources (8, 19). level modeling. These factors have limited our in ER (n=6) 29 min. (16-40), and in GW, (n=6) 34 min. Professions differed about relevant patients´ burden of understanding of the evolution of symptoms over time. (8-55), and (b) for FUV, in OPC (n=63) 28 min. (3-115), research (overall 51%, physicians 1/3, nurses and Aim: To test and compare novel approaches to in ER (n=4) 16 min. (8-25), in APCU (n=62) 21 min. (9- chaplains 2/3). 60% stated, that studies are helpful even longitudinal analysis of repeated measures in the same 55) and in GW (n=82) 17 min. (4-50). in patients with limited prognosis. 85% reported individuals over time so as to contribute ways to Conclusion: There were differences in the time spent insufficient ear-marked research time, 79% that overcome these constraints. with patients and families in consultations in diverse research time is used by clinical demands, 27% had Methods: Using data from prospective longitudinal situations. This information is important to organize research budgets, 21% experience in grant writing, 83% symptom surveys in advanced cancer, severe COPD, administrative and caring issues accordingly. This study stated, that qualitative research is more difficult to and end-stage chronic kidney disease (CKD), visual is continuing to identify and compare the patients, finance. Only 19% report a research environment with graphical analysis (VGA) was used to develop criteria by teams and settings variables that determine the sufficient research expertise. 49% acknowledge which to group individual trajectories of symptoms consultation length. perceived resistance of nurses towards research. 91% over time. These criteria were then applied by two prioritize clinical work over research, and 70% own different researchers, independently, and inter-rater education.48% perceive english as foreign language as a agreement measured using Cohen´s kappa. research barrier (23% of physicians, 59% of nurses), Results: Of 182 participants, 121 (66.5%) provided FC 12 Research Methodology 53% multilingual switzerland is a barrier (34%, 59%). enough data (≥3 timepoints) to map their symptom 91% demand specific PC research institutes. 73% trajectory (21 cancer, 43 COPD, & 57 CKD). VGA perceive variable PC definitions as barrier. enabled these individual trajectories to be grouped into FC 12.1 Conclusion: The representative survey data are four categories: stable, fluctuating, increasing and consistent with other countries´ experiences and have decreasing. This approach was effective across the three Palliative care in first nations communities: A also specific national PC research policy implications. diseases, and across different measurement scales (ratio, conceptual model to guide program ordinal & continuous). Consistency of groupings was development supported by high inter-rater agreement, with Cohen’s FC 12.3 kappa of 0.93 (CA & ratio scale), 0.85 (COPD & ratio Prince H1, Kelley M L1 scale) and 0.88 (CKD & continuous scale). In CKD, VGA 1Lakehead University, Centre for Education and A Delphi method for the development of a was further compared with individual growth curve Research on Aging and Health, Thunder Bay, Canada cancer pain guidelines - an EPCRC project analysis techniques, achieving Cohen’s kappa of 0.73 for inter-method agreement. Aims: Aboriginal people are dying of illnesses where Pigni A1, Kaasa S2, Gibbins J3, Hanks G3, Brunelli C1, Conclusion: Visual graphical analysis is reliable and they could benefit from palliative care; however there is Caraceni A1, On behalf of the European Palliative Care useful in longitudinal palliative care studies of relatively currently little research evidence to guide the Research Collaborative (EPCRC) small size. Use of these techniques needs further development of palliative care programs within First 1Fondazione IRCCS- Istituto Nazionale dei Tumori, development and wider application to better Nations communities. This project begins to address Palliative Care (Pain Therapy & Rehabilitation), Milan, understand the crucial impact of changing symptoms these gaps in knowledge by implementing and Italy, 2NTNU, Trondheim, Norway, 3Bristol University, for palliative patients. evaluating a conceptual model for developing palliative Bristol, United Kingdom care programs that is applicable nationally and internationally. To revise and develop new guidelines on the use of FC 12.5 Methods: This program of research uses the opioids for the management of cancer pain, we Participatory Action Research (PAR) methodology. The searched for existing guidelines and compared these Serial qualitative interviews: An underutilised conceptual model was applied and evaluated using data with the current EAPC recommendations, to determine approach to understanding the evolving needs of sessions collected over four years in twelve First Nations the optimum content of the new guidelines; 37 key- palliative care patients and their carers communities located in Canada. The model includes points were obtained. These key points were developed four sequential phases: assessing and strengthening as statements and presented to a group of international Kendall M1, Carduff E1, Worth A1, Harris F1, Lloyd A1, antecedent community conditions; creating a local experts using a modified Delphi method to gain Cavers D2, Grant L1, Sheikh A1, Murray S1 Free communication Free catalyst for change, forming the local community team consensus on the content of future guidelines. The 1University of Edinburgh, Primary Palliative Care and growing the local program. PAR interventions used experts were invited to give their assessment of the Research Group, Edinburgh, United Kingdom, 2Western to implement the model were providing education, relevance of key-points; those that should and should General Hospital, Edinburgh Centre for Neuro- mentorship and facilitating collaborative practice. not be included in the new guidelines. oncology, Edinburgh, United Kingdom Results: Case studies of twelve First Nations Forty experts were invited to take part and twenty-eight communities illustrate how the PAR methodology and agreed. Experts were asked to rank each of the 37 key Aim: Qualitative studies can yield an in-depth the conceptual model can be applied to develop point statements using an eleven point numerical understanding of patients’ and carers’ experiences and palliative care programs. As part of our research, four rating scale, with the aim of creating collaborative needs, but, in palliative care, are mostly cross-sectional. communities have the required antecedent community guidelines. The questionnaire was sent to all experts via We aimed to critique the strengths and limitations of conditions to progress and are now being supported e-mail and free text space was allocated to encourage using serial qualitative interviews to study patients with with PAR in phase two of the model: forming the local comments. Twenty-five experts completed the progressive illnesses, and their family and professional community team. Findings from the research have questionnaire. Prior to data analysis we developed cut carers. allowed the researchers to elaborate the conceptual off points for inclusion and exclusion of the statements Methods: We reviewed our experiences of using serial model, in particular in the area of strengthening before recirculation; a score of eight or greater was in-depth interviews in six studies with patients with antecedent conditions. accepted, a score <6 was rejected and a score of six to advanced malignant and non-malignant illnesses and Conclusions: Traditional urban approaches to eight was recirculated. 13 key point statements were their carers. We also gained international perspectives palliative care are not appropriate to First Nations accepted, six eliminated, and 18 with a score between of the utility of this approach by drawing on interviews communities. This project aims to generate knowledge six and eight were recirculated to experts with another with experts in end-of-life research. We framed our that supports innovative and context-specific questionnaire for the second round of Delphi. Experts experiences within a broader context by conducting a approaches to developing palliative care. The four were asked again to rank the statements, using the literature review using Medline, Embase, Cinhal and phase conceptual model for developing palliative care information from the previous round as feedback. PsychInfo databases. Our findings are based on a has proven applicable as a guide to developing Nineteen experts completed the second questionnaire thematic synthesis of these data and illustrated by programs in First Nations communities in Canada. and of the eighteen statements, four were accepted, one quotations from our own studies. eliminated and 13 obtained an average score between Results: Longitudinal qualitative research offers six and eight. Experts maintained their previous score considerable advantages in understanding the dynamic FC 12.2 and only in a few cases the second score was different patient illness experience. Serial interviews allow an on- respect to the first one and close to the average. This going relationship to develop, facilitating discussion of Barriers to research in palliative care in process has enabled us to reach a consensus amongst sensitive and personal issues, while also capturing Switzerland: A national survey experts for the content of new EAPC guidelines on the changing needs and experiences throughout the illness. use of opioids in the management of cancer pain. Moreover, parallel interviews with patient, family and Strasser F1, Inauen R2, Swiss Society of Palliative Care professional carers (interview triads) can generate a (Palliative-CH) rich, multi-perspective understanding of their various 1Oncological Palliative Care Medicine, Oncology & needs. Challenges to undertaking this approach include Palliative Care Center, Cantonal Hospital St.Gallen, attrition, various ethical issues, timing of the first and St.Gallen, Switzerland, 2Oncology, DIM, Cantonal subsequent interviews, developing appropriate Hospital, St.Gallen, Switzerland handling and analytical techniquest, reflexivity and the time and costs incurred. Aim: Research in palliative care is often regarded as Conclusion: These challenges are surmountable and

50 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Free communication sessions with careful planning can be addressed. There is numbers of young people living with a life-limiting contributed to the first Textbook on Children´s considerable scope for extending the use of this condition into adult years. Palliative Care in Africa, relevant to the resounces powerful technique of serial qualitative interviews in Methods: The session will cover the need for available in the developing world and relevant to the palliative care. Serial interview triads can be especially developing the pathway approach, the involvement of different cultures. The 18 hospice sites received useful for planning improved services. We conclude by grassroots experts in the development of the pathway training, support and supervision, with a qualitative suggesting good practice guidelines. and will consider the need for multi-agency working and quantitative assessment carried out at each site. and consideration of end of life issues. It will also The number of children in palliative care programmes discuss the progress of the implementation phase of the increased from 3 200 at the beginning of the year to 7 FC 12.6 pathway across the UK. 000 by September 2008. Assessment of records and Results: The first phase of the implementation of the progress reports showed an improvement in assessment Interviewing older people about end of life Pathway will be to undertake an audit of service of children, including developmental and pain issues: Engaging with ethical frameworks in four provision, based on the five standards of the Care assessment,treatment of psycho-social problems and countries Pathway. Results of this audit will be discussed. pain management in children. The assessment showed Conclusion: The Transition Care Pathway provides a the need for ongoing training and support of sites. In Seymour J E1, Pleschberger S2, Brown J3, Deschepper R4, flexible framework for enabling children´s and adult September 2008 a further 22 sites were identified for Onwuteaka-Philipsen B5, Payne S6, Rurup M5, Cancer palliative care providers to work together to improve the roll-out of children´s palliative care with 3 sites Experiences Collaborative: Perspectives of Older People outcomes for young people with life-limiting identified for development as Centres of Excellence in Project conditions. children´s palliative care. These sites will be developed 1University of Nottingham, School of Nursing, to provide clinical experience for multi-disciplinary Midwifery and Physiotherapy, Nottingham, United professionals from countries in sub-Saharan Africa Kingdom, 2University of Klagenfurt, Department of FC 13.2 linked to training with a piloted curriculum. Palliative Care and Organisational Ethics, Vienna, Austria, 3University of Southampton, School of Nursing Acupuncture to alleviate nausea and vomiting in and Midwifery, Southampton, United Kingdom, 4Vrije pediatric cancer patients - A randomized FC 13.4 Universiteit Brussel, Faculty of Medicine and Pharmacy, multicenter crossover trial Brussels, Belgium, 5VU University Medical Center, Home death for children dying in six European EMGO Institute, Amsterdam, Netherlands, 6Lancaster Gottschling S1, Reindl T2, Meyer S1, Berrang J3, Graeber S4, countries University, International Observatory on End of Life Graf N1 Care, Lancaster, United Kingdom 1University Childrens Hospital Homburg, Homburg, Pousset G1, Bilsen J2, Cohen J3, Addington-Hall J4, Miccinesi Germany, 2Charité-Universitätsmedizin Berlin, Berlin, G5, Onwuteaka-Philipsen B6, Kaasa S7, Mortier F8, Deliens Background: There is an increasing emphasis on Germany, 3Gemeinschaftskrankenhaus Herdecke, L9 using qualitative research among older people to gain Herdecke, Germany, 4Institute of Medical Biometry, 1End-of-Life Care Research Group, Vrije Universiteit their perspectives on palliative and end of life care but Homburg, Germany Brussel; Bioethics Institute Ghent, Ghent University, little debate about the ethical issues involved. This Department of Medical Sociology and Health Sciences, paper has arisen from a European study focusing on the Background: We investigated whether acupuncture as Brussels, Belgium, 2End-of-Life Care Research Group, secondary analysis of interview data from older people a supportive antiemetic approach reduces the need for Vrije Universiteit Brussel; Bioethics Institute Ghent, about end of life issues in the Netherlands, Germany, antiemetic rescue medication during highly Ghent University, Brussels, Belgium, 3End-of-Life Care Belgium and England. emetogenic chemotherapy in pediatric oncology. We Research Group, Vrije Universiteit Brussel, Brussels, Aims: The aim of this project was to develop report about a multicenter crossover study at 5 tertiary Belgium, 4School of Nursing and Midwifery, understanding of the methodological requirements hospitals in Germany. Southampton University, Southampton, United and constraints in studies of ageing and end of life care. Patients and methods: Ttwenty-three children (13.6 Kingdom, 5Centre for Study and Prevention of Cancer, Methods: Ethical and research practice issues were y, ± 2.9) receiving highly emetogenic chemotherapy for Florence, Italy, 6VU University Medical Center, identified during workshops focusing on interviews treatment of solid malignant tumors were included. Department of Public and Occupational Health, EMGO with older people (n=80) from six projects which had Patients were randomly allocated to receive Institute, Amsterdam, Netherlands, 7Norwegian broadly similar concerns and which had been acupuncture treatment either during the second or University of Science and Technology, Trondheim, conducted in four countries. To facilitate this, the team third identical chemotherapy course together with Norway, 8Bioethics Institute Ghent, Ghent University, compared transcripts and field notes. Where necessary standard antiemetic medication. The main outcome Ghent, Belgium, 9End-of-Life Care Research Group, these were translated. Summary ‘pen portraits’ about measure was the amount of additional antiemetic Vrije Universiteit Brussel; VU University Medical Center, interviews were also compared. medication during chemotherapy. Secondary outcome Department of Public and Occupational Health, EMGO Results: We noted across the four countries that the measure was the number of episodes of vomiting per Institute, Brussels, Belgium similar structures of the formal documents and course. procedures for ethical committee review did not Results: Fourty-six chemotherapy courses with or Aim: Guidelines on pediatric palliative care underline correspond well with the purposes of our qualitative without acupuncture were compared. The need for that care at the end of life of chronically ill children studies. rescue antiemetic medication was significantly lower in should preferably be provided in the child’s home Across the four countries we encountered problems in acupuncture courses compared to control courses situation. Till present, no European data at population gaining written informed consent from older people (p=0.001) Episodes of vomiting per course were also level are available for place of death of children. The which are not adequately acknowledged in the significantly lower in courses with acupuncture aim of this study was to compare proportions of home sessions literature. Examples of this included: the social (p=0.007). Except for pain from needling (4/23) no side death for children in six European countries and significance of ‘signing’ consent forms; interpretations effects occurred. Patients acceptance of acupuncture investigate relation between place of death and of project information; expectations about underlying was high. sociodemographic and clinical factors. motivations. Conclusion: Individualised needle acupuncture as Method: Data were collected from death certificates of Researchers encountered ethical issues in the interview applied in our trial seems to be a cheap and effective all deceased children aged 1-17 in Belgium (BE), the communication Free process with older people that were not embraced by method for reducing both, the amount of antiemetic Netherlands (NL), Norway (NO), England (E), Wales the formal review procedure, for example, the role of rescue medication and the incidence of retching and (W) (2003) and Italy (IT) (2002). Gender, cause (cancer, supporting persons present in the interviews. vomiting in children and adolescents during highly natural non-cancer and external) and place of death Conclusions: This paper makes recommendations to emetogenic chemotherapy. (home vs. outside home) and sociodemographic factors inform researchers who seek to engage with older (socio-economic status (SES), degree of urbanization people in palliative and end of life studies. We conclude and number of hospital beds in the area) were included that formal ethical frameworks should be FC 13.3 in the analyses. Data were analyzed using frequencies complemented by attention to the development of and multivariate logistic regression. understanding of practical ethical issues. Developing children´s palliative care in South Results: A total of 3.187 deaths were included in the Africa through developing local resource centres analyses, 534 (16,8%) died from cancer. The proportion in all provices of home deaths was 19,6% (IT), 20,5% (E), 20,6% (W), 21,0% (NO), 23,8% (BE) and 28,6% (NL). Home death FC 13 Children Marston J M1, Robbertze M2, Boucher S J3 was more likely for children dying from cancer in BE, 1Hospice Palliative Care Association of South Africa, NL, E and W, for children with high SES in BE, in areas Management -Paediatrics, Bloemfontein, South Africa, with low number of hospital beds in IT, and for boys in FC 13.1 2Hospice Palliative Care Association of South Africa, NL. Paediatrics, Pretoria, South Africa, 3International Conclusion: The proportion of home deaths for A transition care pathway for young people with Children’s Palliative Care Network, Information children differs between studied countries. In most, but life-limiting conditions Systems, Durban, South Africa not all, countries children dying from cancer had better odds of dying at home than those not dying from Chambers L J1 South Africa has the highest number of people living cancer. Although acknowledging the influence of 1ACT, BS DT, United Kingdom with HIV and AIDS. Whilst hospice services for adults culture in the differences, studying care provisions in are well-developed and effective, children receive few countries with higher proportions of home deaths, Aims: An estimated 6,000 to 10,000 young people live services. Children under 4 years have the highest particularly in chronically ill children, can be helpful to with a terminal illness or life-threatening condition, mortality rate due to infections such as TB and identify factors facilitating terminally ill children to die and many know that they will face a premature death pneumonia, and malnutirition. In 2007 there were at home. Early involvement of palliative care and equal during their teenage years. Their journey through only 6 children´s hospice palliative care resources. access to these services can be important in this adolescence into adulthood is compounded by facing a Through donor funding, the Hospice Palliative Care context. complex and often bewildering transition from Association of South Africa designed a model to Funding: IWT-Flanders. children’s palliative care to adult services. ACT: The identify 18 sites that could be developed through Association for Children´s Palliative Care have training and support, to provide palliative care to developed this resource to guide and support young children, with at least one centre in each of the 9 people, families and professionals through the provinces of South Africa. Training materials, policies transition maze and help services to better support and children´s palliative care documents were young people to adjust to, prepare for, and move-on to developed, as well as a Toolkit for Developing adult services. It has been developed in response to the Children´s Palliative Care in Africa. Members of the growing evidence of the unmet needs and growing Hospice Palliative Care Association of South africa

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 51 Free communication sessions

FC 13.5 were less likely to have died at home (RR 1.5; CI 1.0- Results: Findings revealed that participants were aware 2.2). that they managed discussions relating to prognosis Interdisciplinary palliative care for children Conclusions: Parents who received information that badly. There was reluctance amongst participants to with congenital heart defects and other severe their child’s illness is incurable in an appropriate initiate such discussions, with several key barriers cited. heart conditions manner are more likely to absorb that information. These included limited time in consultations, lack of Whether or not parents are able to absorb the training in delivering bad news, and not wanting to Duroux A1, Loeff M2, Kinast K1, Borasio G D3, Fuehrer M1 information that their child’s illness is incurable has ‘depress’ patients. Difficulties were identified with 1Interdisciplinary Center for Palliative Medicine and implications in terms of location of death and recognizing the appropriate time to initiate discussions Dept. of Pediatrics, Munich University Hospital, preparation for the child’s impending death. because of the uncertain illness trajectory of COPD. Munich, Germany, 2Munich University Hospital, Some participants reported an unwillingness to initiate Pediatric Cardiology, Munich, Germany, discussions unless the patient had specifically requested 3Interdisciplinary Center for Palliative Care, University the information. Avoidance was identified in some of Munich, Munich, Germany FC 14 Non-Cancer participants who variously reported patients to be too old, too young, too sick, or too healthy to discuss Background: Despite major advances in pediatric prognosis. Aids to discussing prognosis were identified. cardiology and pediatric cardiac surgery during the last FC 14.1 These included the presence of a family member or two decades, the life-expectancy of some patients carer, initiation of discussions by the patient remains shortened, e.g. children with hypoplastic left A randomized controlled trial of palliative care themselves, having a good relationship with the heart syndrome. Children and adolescents with consultation on hospitalized patients with patient, and discussing smoking cessation as a prompt complex congenital heart defects and other heart advanced heart failure to a discussion of prognosis. diseases have a need for highly qualified pediatric Conclusion: Although the majority of participants palliative care as well as cardiologic care. Zalenski R1, Vaitkevicius P2, Waselewsky D3, Burn J4, Hopp agreed that they discussed prognosis badly, participants Patients: From 2004 to 2008 the Coordination Center F5 had differing opinions regarding if and when for Pediatric Palliative Care (CPPC) cared for 23 patients 1Wayne State University, Emergency Medicine, Detroit, discussions should be initiated. Despite the poor with complex congenital heart defects and other severe United States, 2John D. Dingell VA Medical Center, prognosis associated with COPD and the shortcomings heart diseases (average age 4 yrs, range 0-18 yrs). In 15 Cardiology, Detroit, United States, 3Sinai Grace in education perceived by patients, open cases pediatric cardiologists involved the CPPC-team Hospital/Wayne State University, Dept of Emergency communication regarding prognosis is not routine in during the decision-making process. In 5 cases life- Medicine, Detroit, United States, 4Sinai Grace Hospital, either primary or secondary care. prolonging measures such as extracorporeal membrane Emergency Medicine, Detroit, United States, 5Wayne oxygenation were discontinued after the consultation. State University School of Social Work, Detroit, United In 9 cases the CPPC coordinated the care at home; in 4 States FC 14.3 cases a consultation regarding goals of care preceded discharge from hospital. Altogether, 15 patients died, 7 Aims: Although Heart Failure (HF) has accelerated Challenging gender stereotypes in palliative care of which at home. Four children suffered from complex functional decline, multiple co-morbidities and high congenital dysplasia syndromes. One child was mortality, few patients are referred to hospice care after Cameron S1, DeFilippi K1 diagnosed prenatally and the parents decided to acute hospitalizations, perhaps because of poor access 1Hospice Palliative Care Association of South Africa, continue the pregnancy after contact with the CPPC. to palliative care. We designed a randomized controlled Patient Care, Cape Town, South Africa The average follow-up time at home by the CPPC until trial to test the hypothesis that a palliative care consult death was 5.6 months (range 0.7-12 mo). Selected case (PCC) intervention would lead to an increased Aim: Given the devastating effects of HIV/AIDS on the reports describe the special challenges of palliative care utilization in hospice/palliative care. lives of women in South Africa, particularly young for pediatric cardiologic patients. Design: Prospective randomized controlled trial of women disproportionately vulnerable to infection and Conclusion: Interdisciplinary cooperation between patients hospitalized with advanced (New York Heart girls and older women who bear the burden of care in pediatric cardiologic and pediatric palliative care teams III/IV or >30% predicted 1 year mortality) received the home, the Hospice Palliative Care Association may be helpful in decision-making concerning goals of either PCC or standard disease management. Patients (HPCA) identified the need to explore the influence of care. Home care for children with incurable heart were excluded patients if they had other terminal gender perceptions on care delivery within its member disease is more effective when care is coordinated by a disease/malignancy, cognitive deficits/psychosis, or hospices. The aims were to promote increased gender pediatric palliative care team which is available for were heart transplant candidates. Primary outcome awareness, to incorporate gender sensitivity in consultation by patients, parents, doctors and nurses. variable was the utilization of a palliative approach of patient/family care and to develop gender guidelines. Such a team can address disease-specific aspects of care hospice or DNR+comfort care. Method: Hospices completed two questionnaires and assist in advance care planning, e.g. by establishing Results: Patients were predominantly (90%) black and focusing on key gender issues at an internal an emergency plan. This can stabilize the care situation 53% male. The intervention and control groups organizational level and at the programme/service and makes end-of-life care at home more likely. respectively (n= 42 per group) had comparable ages of delivery level. Responses indicated that hospice staff 66.5 vs 68.0 years (p=.57) and Lee heart failure severity were, on the whole, unclear on what was meant by scores (109 vs. 107), and McGill quality of life scores gender and how it played out in both the internal and FC 13.6 (p=.9) at baseline. At 3 month follow-up, 14/84 (16.6%) external workings of the organiation. Regional gender of patients had died. A total of 4/42 (9.5%) met the workshops, facilitated by contracted gender Absorbing information about a child´s incurable primary outcome in the intervention group and 0% in consultants, offered hospice staff the opportunity to sessions cancer prognosis: Perspectives of bereaved the control group (Fisher´s Exact test 2-sided p=0.11). explore such diverse issues as gender stereotypes, the parents Conclusion: Palliative care consultation had a modest empowerment of women as patients and carers, the effect on the primary outcome, and the effect size involvement of males, stigma and the need to include Lannen P1, Wolfe J2, Mack J2, Onelov E3, Nyberg U4, approached but did not achieve statistical significance. gender criteria in policies and standards. Free communication Free Kreicbergs U5 In this mostly African American population, barriers to Results: Gender guidelines drafted with input from 1Institute of Social & Preventive Medicine, Bern, palliative care included patient/family mistrust of the workshop participants, will provide a resource to Switzerland, 2Dana Farber Cancer Institute, Department health care system, a reluctance to plan for promote gender sensitivity in all aspects of palliative of Pediatric Oncology and the Center for Outcomes and incapacitating illness, and a fear that comfort care care programmes. A national HPCA Gender Task Team Policy Research, Boston, United States, 3Karolinska might lead to minimal care. Tailoring of a palliative has been established to take into account the gender Institutet, Division of Clinical Cancer Epidemiology, care intervention to address these barriers might result dimensions of palliative care within portfolios ranging Stockholm, Sweden, 4Karolinska Institutet, Department in increased comfort and knowledge for patients with from patient care, education and research to advocacy of Clinical Neuroscience, Stockholm, Sweden, exacerbations of advanced heart failure. and organisational development. 5Karolinska Institutet, Department of Women and Conclusion: Gender needs to be seen as an Child’s Health, Sweden inextricable part of the provision of palliative care, FC 14.2 particularly with regard to HIV/AIDS. We believe that Aims: To assess parents’ ability to absorb information this ground-breaking work can make a significant that their child’s illness was incurable and to identify Discussing prognosis in advanced COPD: contribution to enhancing patient care and family factors associated with parents’ ability to absorb the Findings from a qualitative study with medical support by taking gender roles and gender needs into information. and nursing staff in the UK account. Study design and methods: An anonymous mail-in questionnaire study was performed as a population- Gardiner C1, Gott M1, Barnes S2, Halpin D3, Payne S4, Ruse based investigation in Sweden between August and C5, Seamark D6, Small N7 FC 14.4 October of 2001. 449 parents who lost a child to cancer 1University of Sheffield, Sheffield Institute for Studies 4 to 9 years earlier (response rate 80%) completed the on Ageing, Sheffield, United Kingdom, 2University of ‘Total carers’, or wives caring for husbands with survey. 191 (43%) of the bereaved parents were fathers Sheffield, School of Health and Related Research, a long-term illness and 251 (56%) were mothers. For outcomes of interest, Sheffield, United Kingdom, 3Royal Devon and Exeter we report relative risk (RR) with 95 percent confidence Hospital, Exeter, United Kingdom, 4University of Gysels M H1, Higginson I J1 intervals (CI). To assess relative importance, a logistic Lancaster, Institute for Health Research, Lancaster, 1King’s College London, Palliative Care Policy and regression was performed. United Kingdom, 5Northern General Hospital, Rehabilitation, London, United Kingdom Results: Sixty percent of parents (N=258) reported that Sheffield, United Kingdom, 6Honiton Surgery, Exeter, they were able to absorb the information that their United Kingdom, 7University of Bradford, School of Background: Recent trends in UK health policy have child´s illness was incurable. Parents were better able to Health Studies, Bradford, United Kingdom shifted increasingly from institutional to community absorb the information that their child’s illness was care. Reconfiguration of services need to develop incurable when the information was given in an Background: Prognosis in COPD is poor and many support programmes for informal carers who provide appropriate manner (RR 1.6; CI 1.3-2.0), when they patients perceive shortcomings in the education they most of the care for patients with a long-term illness. shared their problems with others during the child´s receive about aspects of their condition, including Aim: To examine the role expectations of wife carers illness (RR 1.4; CI 1.1-1.8) and when they had no prognosis. This paper addresses the views of health care for husbands with a progressive and life-limiting illness. history of depression (RR 1.3; CI 1.0-1.8). When professionals regarding discussing prognosis with Methods: A purposive sample of 15 wife carers was mothers were able to absorb the information, they were patients with COPD. selected. They were recruited via their husbands who more likely to have said farewell to their child in the Method: 44 medical and nursing staff involved in the suffered from a long-term illness (COPD, cancer, MND, way that they wanted to (RR 1.5; CI 1.3-1.9). Children of care of patients with COPD in primary and secondary heart failure), from outpatient clinics in the hospital, fathers who reported having absorbed this information care settings participated in five focus groups. and from a palliative care team providing home care.

52 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Free communication sessions

Data were collected through semi-structured, in-depth interviews. All were tape-recorded and transcribed verbatim. This was complemented by participant observation during outpatient consultations. The analysis followed the initial stages of Grounded Theory and used Discourse analysis. NVivo software was used to manage and assist the analysis of the data. Results: Descriptions of tasks, and the values attached to these, revealed that wife carers aspired to provide all the care by themselves. Interference from outside was seen as failure. They saw their role as a duty, which could be traced back to existing feminine responsibilities to take care, love and nurture the sick and vulnerable. These ideas are reinforced by self- health discourses placing responsibility for health with the individual. This leaves wife carers with huge caring burdens, which are usually taken for granted. Conclusion: To support carers in their role they need 1. A complete system of available professional expertise and care, 2. training in nursing skills, and education about their role in the care system, 3. interactive support, recognising wives as the providers of ‘total care’.

FC 14.5

Navigating a palliative approach in residential aged care: Reflecting on the key outcomes from the Residential-Palliative Approach Competency (R-PAC) project and the importance of collaborative partnerships

Phillips J L1, Davidson P M2 1Curtin University, School of Nursing and Midwifery, Faculty of Health Science, Sydney, Australia, 2Curtin University, School of Nursing and Midwifery, Sydney, Australia

Aim: The R-PAC Project aimed to collaboratively develop, implement and evaluate a sustainable model of care to facilitate the delivery of a palliative approach for older people admitted to nine residential aged care facilities (RACF) in regional Australian. Methods: Action research underpinned the R-PAC Project with eight distinct but interrelated studies guiding this process. These studies included: a focused needs assessment (Study A), pre and post test chart audits (Studies B & F), focus groups with aged care providers (Studies C & G) and general practitioners (Study E) and a pre and post test provider survey (Studies D & H). Results: Action research facilitated a cascade of engagement with all RACF. The data provided valuable insights into usual practice, collaboratively engaging aged care nurses, care assistants and general sessions practitioners in developing practical solutions to enhance palliative care delivery in this setting and guided the development of a multifaceted intervention. Key outcomes from this research are the need to acknowledge and validate the role of aged care communication Free providers, the value of personal empowerment and the importance of multidisciplinary collaboration. There is a need to further embed the use of validated assessment tools, to promote advance care planning, support the creation of multidisciplinary teams and develop sustainable strategies to maintain links with specialist pallaitive care services. Conclusion: The R-PAC Project has provided greater insight into the palliative care needs of older people in residential aged care and has foster the collaboratively development of a model of care that promotes the delivery of a palliative approach.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 53 Free communication sessions sessions Free communication Free

54 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday)

Poster sessions (Friday) sessions (Friday) Poster

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 55 Poster sessions (Friday)

PE 1.F1 PE 1.F3 study period compared with actual place and time of death. Developing a measure for excess respiratory “A risky risk assessment?!” Is risk assessment for Results: As demonstrated in earlier studies nurses and secretions or ‘rattle’ at the end of life venous thrombo-embolism appropriate for assistant nurses make prognosis more accurate than palliative care inpatients? physicians. Personel with long working experience Johnstone R P1, Fowell A1, Finlay I2, Russell I3 make better prognosis than unexperienced. In some 1North West Wales NHS Trust, Palliative Care, Haworth S J1, Groves K E2 cases the assessements are far from accurate, especially Caernarfon, United Kingdom, 2Velindre Hospital, 1Queenscourt Hospice, Palliative Medicine, Southport, in cases with long life expectancy. Relationships with Palliative Medicine, Cardiff, United Kingdom, 3Bangor United Kingdom, 2West Lancs, Southport & Formby diagnosis, age, sex, marrital status and place of death University, NWORTH, Bangor, United Kingdom Palliative Care Services, Palliative Medicine, Southport, are demonstrated in the poster. Merseyside, United Kingdom Conclusions: In order to provide good palliative care it Excess respiratory secretions or rattle is a commonly is essential to discuss prognosis as well as expected place occurring symptom at the end of life. Centralised Background: Risks of venous thrombo-embolism of death in the multiprofessional palliative care team. variance monitoring from the Integrated Care Pathway (VTE) and clotting disorders are high in the palliative Personell involved in nursing and in close body contact (ICP) for the last days of life has resulted in a database care population due to cancer, advanced disease, poor with the patient, seems to be better at assessing, and of over 10,000 entries from various care settings across mobility and age. The UK government have recently need to be closely involved in the discussions about Wales. released a VTE risk assessment tool to be used for all prognosis. Analysis of this database shows that despite the use of patients on admission to hospital the recommended anti-cholinergic medications and (surgical/medical/obstetric). nursing interventions rattle continues to be Method: 50 consecutive in-patient deaths, within a 5 PE 1.F6 problematic for 33% of a sample of 10126 patients. month period, in a specialist palliative care unit were Fully powered trials seeking to determine the most identified. The VTE risk assessment tool was Descriptive study of the complexity case-mix effective medication/management of this difficult retrospectively applied. Concurrently the visited by a palliative home-care team. 2 years symptom will need an outcome measure. incidence/occurrence of symptomatic VTE and time to follow-up study In concurrence with the recent Cochrane review our death in this group of patients was documented. literature review failed to identify any studies using an Results: The results show the implications of applying Fariñas-Balaguer O1, Adell-Bru J2, Garcia-Marcet N2, existing outcome measure for rattle. Consequently a UK this tool in this population and the questions raised Gómez-Contreras T2 expert medical, nursing and academic panel was about the appropriateness of following the national 1Hospital Santa Creu i Sant Pau, Palliative Care Unit, convened to agree a measurement scale for rattle that guidelines for thrombo-prophylaxis in this patient Barcelona, Spain, 2Palliative Team, Institut Català de la could be used as part of routine care. The panel agreed population. Salut, St. Feliu de Llobregat, Spain on two visual analogue scales with simple positive/negative anchors to assess the volume and the Aims: To study characteristics and complexity factors of wetness of the rattle. PE 1.F4 home-care palliative oncology patients and analyze In the absences of any ‘gold standard’ against which to their relationship with the place of death. validate the proposed new scale, internal, external, Get SMART - Objective setting on hospice Design: Prospective cohort study. construct and face validity need to be established along admission Setting: Primary care, Urban and rural areas. with reliability. Patients: New palliative oncology patients followed for The scale has been used satisfactorily in a small sample Dando N1, England S1, Sharma K1, Ford-Dunn S1 24 months from 01/01/2006 to 31/12/2007. N=208, 22 of patients. Colleagues report that it is simple to use 1St Barnabas House, Worthing, United Kingdom excluded. and easily incorporated into routine observations and is Measurements: Age, Sex, Living area: Urban/Rural, therefore unobtrusive to the patient or their carers. Aim: To investigate whether it is possible set SMART Cancer type, Barthel, Karnofsky. Complexity: Clinical, Further use with a larger sample of patients in different (Specific, Measurable, Achievable, Realistic, Timely) Ethics, Assistance, Social. care settings is required to establish full validity and objectives and measure outcomes for patients admitted Place of death: Home/hospital. initiate tests of reliability. to the inpatient unit (IPU) at St Barnabas Hospice. At St Results: Men:119(64%), Women:67(36%), Living area: Barnabas, setting of objectives prior to admission is an Rural 52(28%), Urban 134(72%). Mean age 71,8. Place important part of the preparation for the patient and of death: 48% Home, 52% in Hospital /Hospice. PE 1.F2 family members. It also guides the medical and nursing Bivariant analysis: There where no diferences in the teams in tailoring an individual care plan over the place of death with regard to sex or living area of the Depression among patients with advanced course of the stay. To focus the direction and clarity of patients. Patients dying at home were older ( mean age disease; Do standardised screening tools improve these goals, this study aims to assess whether the 74,5 years) than those who died in hospital (69,35 identification? business acronym SMART can be applied to clinical years), statistic significance (p=0,0016). objective setting. Almost all patients (93,5%) had at least one complexity Brackenridge E C1, Swann D2, Koffman J3 Methods: This is a prospective survey of new factor.(Mean number complexity factors:3,03). The 1Mayday Healthcare NHS Trust, Palliative Care admissions to the IPU between 21/04/08 and 23/05/08. relative frequencies of complexity factors were: Clinical Department, London, United Kingdom, 2Mayday As part of routine medical clerking, the admitting 60%, Social 22%, Asistance 14%, Ethics 4%. No University Hospital, London, United Kingdom, 3Kings doctor agreed objectives for admission with the patient, relationship was found between number of complexity University College, Department of Palliative Care, aiming to fulfil SMART criteria. Outcomes were factors an place of death. The mean Social Complexity Policy and Rehabilitation, London, United Kingdom followed up over the course of the admission at the is higher (0,82) in patients dying in hospital or hospice twice weekly Consultant ward round or a critical than in those dying at home 0,49 (p=0,0091). The Aim: To explore whether the introduction of a change in the patient pathway. The end point for multivariate analysis confirmed the association of age standardised screening tool represents a more effective assessment and review of outcomes was the point of and Social Complexity with the place of death. method of identifying depression among patients with death or discharge. Conclusions: Home-care palliative patients studied advanced disease. The screening tool was compared to Results: Thirty four patients were assessed and had a preponderance of male sex (64%), with a mean existing non-standardised patient assessments- objectives set with 25 (74%). A total of 44 objectives age of 71,3 years and 93,5% had at least one compleity conversations with health care professionals working in were set and 22-29 (55-66%) were considered SMART factor (mean of 3,03). Age and Social complexity factors the hospital palliative care setting. by two reviewers. On assessing outcomes, 31 (70%) of were statistically associated with place of death. In our Methods: The study involved three stages. Stage 1 was initial objectives were achieved. cohort Clinical complexity is not associated with place a retrospective review of palliative care Conclusions: We have shown that it is possible to set of death. Future studies focused on analysis of notes.Observational techniques were used to identify SMART objectives with patients on admission to the complexity factors in different geographic areas would sessions the proportion of patients with a documented IPU and to follow these through to their conclusions. be of great interest. diagnosis of depression, explore their characteristics We would recommend setting clear goals which are

(Friday) and calculate the prevalence of depression. Stages 2 and realistic and achievable for the individual patient. 3 were prospective, recruiting newly referred patients to Employing the concept of SMART objective setting may PE 1.F7

Poster the palliative care team. In stage 2 the patients were also help facilitate discussions with some patients to assessed in the routine clinical manner. In stage three, help them explore insight and prognosis. Systematic symptom monitoring in a hospice the same group of patients completed the Hospital Anxiety and Depression Scale (HADS). Results from de Graeff A1, de Nijs E1, Jansen-de Bos I2, Teunissen S1 stages 2 and 3 were compared in terms of prevalence of PE 1.F5 1University Medical Center Utrecht, Department of depression diagnosed and level of agreement between Medical Oncology, Utrecht, Netherlands, 2Academic the two methods. Comparisons were also made How to assess remaining life-span Hospice Demeter, De Bilt, Netherlands between the characteristics of and treatment plans implemented for those with a diagnosis of depression. Eckerdal G1, Carlsson B1, Ericson K1, Kilersjö A1, Lindberg Aim of the study: To assess the use of systematic Results: Stage 1 (n=74), 62% had a psychological G1, Olofsson B1, Sandblom M1, Skale B1, Vejdin A1, Werdin symptom monitoring for screening and evaluation of assessment documented. The prevalence of depression A-C1 the effect of symptom management in a hospice. was 22%. Depression was more common in people 1Kungsbacka Hospital, Kungsbacka, Sweden Design and methods: A modified Edmonton living alone and in those with cancer of the lower Symptom Assessment Scale (using a numeric rating gastro-intestinal tract. Stages 2 and 3 (n= 30), 70% had a Aims: In palliative care it is always essential to plan for scale of 0-10 and a cut-off of 5) for 13 symptoms was psychological assessment documented. The prevalence the future. What problems can be expected? In what used in hospice patients at admission and subsequently of depression in stage 2 was 24% compared with 48% in setting shall the care be provided? In the palliative care at least twice a week. Symptoms are reported as median stage 3. Comparing the two methods, there was team the different members get different views of the scores, percentage of patients with a symptom score of agreement in 57%. The Cohen-kappa statistical test for patient and the current situation. In this study the >4 and the percentage of these patients showing an agreement was 0.12 (poor agreement). different team professions ability to assess expected improvement of at least 2 points after 1 week. Conclusion: The HADS is a useful method of place and time of death is demonstrated. Results: 47 patients (45% male, median age 74 years, screening for depression and identifies more patients Methods: A consecutive number of patient recruited 87% with cancer) were admitted between July 2007 and than routine clinical assessment. However this does not from a in-patient palliative care unit were assesed on August 2008. Survival: 28% 1-7 days, 44% 8-30 days, equate with being more effective in clinical day 3 after admission. All teammembers involved filled 28% >30 days. Symptom monitoring was possible in practice.Routine use of the HADS may prompt in a form with their assessement of life expectancy and 81% of patients for a median period of 2 weeks. Patients professionals and increase their confidence in expected place of death. These data, along with discontinued symptom registration because of psychological assessments. diagnosis, age, sex and marrital status, were after the deterioration (62%) or not being able (23%) or being

56 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) unwilling (15%) to score their symptoms. Conclusion: “You haven`t given me any tablets, but commonest reasons for admission in our patient Pain: median score at admission 2.43, number of even so I feel in a much lighter mood now. I don`t population suffering from HCC and CLD. patients with a symptom score >5 at admission 26% know what you do - but it works!” Asthenia/weakness (60%) and bodyache/pain (35%) are (33% of these patients showing an improvement after 1 the second and third commonest presenting features. wk); nausea 0.91, 11% (50%); depression 1.63, 17% Discussion: Patients with incurable Liver diseases need (32%); anxiety 0.84, 7% (0%); drowsiness 2.09, 23% PE 1.F10 Palliative care in line with World Health Organisation (25%); anorexia 4.97, 65% (25%); dyspnoea 2.20, 23% definition. There is growing data on patients with non- (37%); insomnia 1.97, 21% (57%); fatigue 6.66, 87% Prognosis accuracy of PPI and PaP Score in malignant diseases and their Palliative care needs. (36%); constipation 1.83, 20% (50%); confusion 1.12, terminally ill cancer patients: Which one is However, there is less data on Liver disease. Large scale 12% (25%); dry mouth 4.66, 56% (39%); dyphagia 2.21, better? studies are needed to determine psychological, social 30% (30%). and spiritual needs of these patients. Conclusion: Systematic symptom monitoring is De Miguel C1, Castillo M J1, Garrido S2, Vicente F3, García- feasible in the majority of a sample of 47 hospice Esquinas E4 patients. Fatigue, anorexia and dry mouth show the 1Palliative Team, Primary Health Care Managment Area PE 1.F12 highest scores at admission. Improvement after 1 week 7, Madrid, Spain, 2Primary Care Department, Madrid, is seen in 25-57% of patients with high initial scores. Spain, 3Palliative Team, Madrid, Spain, 4Hospital Prognostication in the hospice setting: The Ramón y Cajal, Madrid, Spain usefulness of the modified Glasgow Prognostic Score PE 1.F8 Objective: To compare the prognosis accuracy between the PPI (Palliative Prognostic Index) and the PaP Score Brown D J F1, Partridge M1, Adam J1, Mcmillan D C2 Barometer to measure stress levels among care (Palliative Prognostic Score), in predicting the survival 1St Columba’s Hospice, Edinburgh, United Kingdom, staff of terminally ill cancer patients attended by a Home 2Glasgow Royal Infirmary, Glasgow, United Kingdom Care Support Team. Dempers C L1, Lauton S2 Methods: Observational, prospective study. All the Aim: Cancer patients and their families frequently 1Hospice Palliative Care Association of South Africa, terminally-ill cancer patients (n=17) attended to request information on prognosis. Inflammation Patient Care, Cape Town, South Africa, 2Khanya between 1st April and 31st September 2008 were appears to be an important factor in assessing prognosis Hospice, Social Work, Umkomaas, South Africa included in the study. We collected the following in cancer. The recently modified Glasgow Prognostic variables: age, sex, tumor localization, variables that Score (mGPS) - which combines thresholds of C- Aim: To adequately measure stress in hospice integrate the PPI (Palliative Performance Status, state of reactive protein (CRP) and albumin - is an independent caregivers, so that appropriate interventions can be oral intake, dyspnea at rest, edema and delirium), predictor of survival in cancer patients, but has never planned and carried out. Caregiver burnout has serious variables that integrate the PaP Score (dyspnea, been used to assess patients in a specialist palliative care consequences for the caregiver, care recipient and anorexia, Karnofsky Performance Status, total white unit (hospice). The aim of the study was to establish health care system. Caregivers struggling with blood count (WBC), Lymphocyte Percentage and whether the mGPS predicts survival in hospice emotional exhaustion often become less sensitive to Clinical Prediction of Survival); and survival time inpatients with advanced cancer. the care recipients feelings and needs. This increases defined as the number of days that passed between the Methods: A retrospective note survey was carried out. the likelihood that the care recipient will be treated in a initial visit and the date of death. Patients who had both CRP and albumin measured mechanical fashion. Results: During the study period, 17 patients died and during the admission were included. mGPS was Methods: An assessment tool was developed to were included in the analysis. 52.9% of the studied calculated as follows: patients with elevated CRP (> regularly measure stress levels among Professional subjects were males. The mean age was 75.3. The three 10mg/l) and low albumin (< 35g/l) were scored mGPS Nurses and trained caregivers. Six key stress related most common localization of primary tumor were the 2. Those patients with a raised CRP alone were scored variables are monitored on a monthly basis and the gastrointestinal tract (52%), genitourinary tract (12%) mGPS 1. Those with a low albumin alone, or if both results from the coping levels measure are displayed on and liver (12%). The median of survival was 14 days. parameters were normal, were scored mGPS 0. Survival a monthly basis and the results from the coping levels PPI over 4 predicted in our patients a survival below 6 analysis was performed using the Kaplan-Meier method measure are displayed on a bar graph. weeks with a 31% sensitivity and a 100% specificity. No with the log-rank test. Results: This tool enables the supervisor to target patients had PPI over 6, so threshold at 6 could not be Results: Data was obtained for 97 patients. Thirteen specific areas that the care staff appear to struggle with evaluated. Survival over 30 days was 75% in patients patients had mGPS 0, 18 patients mGPS 1 and 66 and plan meaningful intervention. Over time, the with PaP Score below 5.5, and 22% in those with PaP patients mGPS 2. Median survival from date of blood results from the monthly assessments indicate which Score between 5.6 and 11. No patients with PaP Score test for the 3 groups was 47 (5-400) days, 47 (1-216) interventions have indeed had a positive influence on over 11 survived. days and 23 (2-252) days respectively (p=0.016). When a the manner in which the staff have coped with stress, as Conclusions: The PaP Score had a better accuracy in survival cut-off of 2 weeks was used, comparing mGPS well as trends in stressors. predicting survival time in our patients but a larger scores of <2 and 2, sensitivity was 87.5%, specificity was Conclusion: This useful tool has been applied with sample size is needed in order to draw stronger 41.5%, positive predictive value was 42.4% and negative good results, and has been shared with other hospices conclusions. predictive value was 87%. in the South African context. Keywords: Palliative Prognostic Index, palliative care, Conclusion: The mGPS is predictive of survival in PaP Score, predictors of survival, advanced cancer. hospice patients with advanced cancer. However, the majority of patients with mGPS 2 survive longer than 2 PE 1.F9 weeks. Nevertheless, the high negative predictive value PE 1.F11 suggests that patients with mGPS < 2 are very likely to Experiences by implementing ESAS in an hospice live more than 2 weeks: this has implications for day care unit Assessment of palliative care needs of patients assessing the most appropriate place of care for this with Chronic Liver Disease at a rural tertiary group. The study did not require funding and was Strand E1, Ellingsen E1, Normann A P1 referral centre in Pakistan carried out as a medical student project. 1Lovisenberg Diaconal Hospital, Hospice Lovisenberg, Oslo, Norway Abbas S Q1, Abbas Z2, Khan P3 1St Clare Hospice, Palliative Medicine, Hastingwood, PE 1.F13 Aim: To be able to give optimal symptom palliation. United Kingdom, 2Muhammad Medical College Make the staff aware of the patient`s general health Hospital, General Medicine & Gastroenterology, Assessing prognosis in the hospice: The views of picture. Allow the patients to express their own Mirpurkhas, Pakistan, 3Muhammad Medical College nursing staff experience in a simple way. Gives a starting point for Hospital, General Medicine, Mirpurkhas, Pakistan eventual intervention and consequent follow-up. Brown D J F1, Partridge M1, Adam J1 sessions Hospice day centre gives patients with an advanced and Background: Hepatocellular Carcinoma (HCC) and 1St Columba’s Hospice, Edinburgh, United Kingdom incurable disease, the chance to meet others in the Chronic Liver Disease (CLD) are relatively common in (Friday) same situation socially. The multidisciplinary team our region (rural Pakistan) because of high prevalence Aim: Patients and families frequently ask hospice staff

have the common goal of offering the patient palliative of hepatitis viral infection B and C with significant how long the patient will survive. Some prognostic Poster treatment, and helping them with other problematic palliative care needs. However there is lack of data on scales using blood tests may provide information which themes. Priority is given to a wide range of activities at such needs of patients with CLD. will guide answers to this question. Little is known of the Hospice, in the belief that both taking part and Aims: To determine the physical Palliative care needs the views of hospice staff on these issues. The aim of achievement is very beneficial to the patient`s general of patients with HCC and CLD that require medical the study was to establish the views of hospice nursing feeling of well-being. The patients, and their nearest admissions in last three months of life. staff on how they assess prognosis, on the importance kin, are treated otherwise as unique individuals. Patients and methods: Prospective study of 40 of giving prognostic information and their views on a Methods: The patient fills out the ESAS questionnaire consecutively admitted patients with CLD and HCC in prognostic test involving blood sampling. each time they come. The scores are later filled in, in our liver ward over a 4 months period who died within Methods: Six short semi-structured interviews were the patients file. There, the patient`s prime contact can 3 months of data collection. carried out with staff nurses working in a specialist observe and compare the different scores, and take the Results: There were 32 males and 8 females with an palliative care unit (hospice). The interviews were appropriate initiatives, if needed. average age of 58.5 years (range=45-70). All had recorded and transcribed verbatim. The transcripts were In a two week period, the patients where asked to fill Ultrasound scan findings suggestive of HCC and CLD analysed thematically. out the ESAS form both on arrivial, and on leaving. The with raised levels of Alfa-fetoprotein in 32 patients. 4 Results: Themes identified: results showed that symptoms that were troublesome in patients had a positive serology for hepatitis B s 1. Diagnosing dying: as patients became less well, they the morning, had become less troublesome during the Antigen, 3 had a history of heavy alcohol intake, 7 had experienced more physical symptoms and became course of their stay at the Hospice! no known risk factor for liver disease and the remaining more dependent on nursing staff. Results: We experience ESAS as a meaningful clinical 26 patients had serology positive for hepatitis virus C. 2. Changing priorities: patients experienced shrinking tool. It helps us to keep in focus important symptoms, On presentation, 36 patients (90%) complained of of their horizons and focussed on tying up loose ends. subsequent following up of these, and is a basis for abdominal pain/discomfort, 24 (60%) weakness, 14 3. The Nurse’s Response: nurses altered their care working together with the patient. The complexity of (35%) bodyache/pain, 11 (30%) had low grade fever, 3 approach, with an emphasis on comfort care and filling the patient`s experiences of pain and discomfort means each (10%) had leg pain and upper GI bleed and 2 gaps between patient’s abilities and what needed done. that each patient needs to be understood and met as an patient (5%) complained of severe weight loss. 10 4. Assessing prognosis: some nurses discussed use of individual. ESAS visualises their sufferings and help patients (25%) also had ascites accompanied by intuition, based on clinical observation and building a predict and more understanding for coherence and that abdominal pain/discomfort. relationship with the patient. Half felt that a scoring the patient and health worker plan together. Conclusion: Abdominal pain/discomfort are the system based on blood tests might be helpful if it was

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 57 Poster sessions (Friday)

minimally invasive. completed the MOBID-2. Characteristics of the PE 1.F17 5. “How long?”: it was important to answer the patients’ pain were also investigated by their physicians question honestly, but emphasise the imprecision of (N=4). Estimation of quality of life of palliative care prognostic estimates; family could find uncertainty Results: Prevalence of any pain was 81%, with patients by nurses, physicians and patients. A difficult. predominance to the musculoskeletal system, highly comperative study Conclusion: Staff played an important role in associated with the MOBID-2 overall pain score assessing prognosis and in facilitating increasing need (rho=0.82). Most frequent and painful were mobilizing Hladschik-Kermer B1, Kierner K A2, Gartner V2, Hassler M2, for care and managing unfinished business. The use of legs. Pain in pelvis and/or genital organs was frequently Watzke H2, AUPAC Study Group a prognostic test was not excluded, but some preferred observed in Part 2. Moderate to excellent agreement 1Medical University of Vienna, Department of Medical to rely on intuition and clinical experience. Prognostic was demonstrated for behaviours and pain drawings Psychology, Vienna, Austria, 2Medical University of questions were answered honestly, although families (κ=0.41-0.90 and κ=0.46-0.93). Inter-rater and test-retest Vienna, Vienna, Austria were left with some uncertainty. The study did not reliability for pain intensity was very good, ICC(1,1) require funding and was carried out as a medical ranging 0.80-0.94 and 0.60-0.94. Internal consistency Discrepancies exist in estimation of quality of life (QL) student project. was highly satisfactory; Cronbach’s α ranging 0.82- by patients and caregivers. We performed a prospective, 0.84. Face-, construct- and concurrent validity was multi-centre, cross sectional study in which QL of good. Overall pain intensity by MOBID-2 was well patients in 20 palliative care units in Austria was PE 1.F14 correlated with physicians’ clinical examination and estimated by patients, nurses and physicians using the defined parameters of pain (rho=0.41-0.64). EORTC QLQ-C15-PAL questionnaire. In addition, we Which symptoms and problems do patients in Conclusion: Based on pain behaviours, standardized evaluated a panel consisting of 38 variables which palliative care report in addition to those movements, and pain drawings, MOBID-2 pain potentially could influence the accuracy of estimation included in the EORTC QLQ-C15-PAL? intensity scores were shown to be sufficiently reliable, of quality of life of patients (gold standard) by nurses Presentation of a brief instrument valid, and time-effective for nurses to assess pain in and physicians. supplementing the EORTC QLQ-C15-PAL patients with severe dementia. 153 patients (52 femal, 101 male) with a mean age of 69 years (range: 36 - 88) and a median Karnovski Index of Groenvold M1, Lund L1, Mikkelsen S S1, Pedersen L1, 50 (Q1:30;Q3:60) completed the study. QL of these Petersen M A1 PE 1.F16 patients was estimated by 70 nurses (f: 83%,m:17%) 1Bispebjerg Hospital, Dept. Palliative Medicine, nurses and 53 physicians (f:63%,m:37%). Both groups Copenhagen, Denmark Screening for physical, psychosocial and of caregivers had substantial concordance with patients spiritual distress among palliative cancer with regard to physical functioning (r > .600).Both Aim: The EORTC QLQ-C15-PAL questionnaire patients: Development and application of the groups overrated patients in their social functioning measures nine symptoms and problems (S/P) FBPP with but underrate patients in their emotional frequently reported by patients in palliative care, as well functioning (nurses=.204; physicians:r=.304). A lower as overall quality of life. This study aims at Fischbeck S1, Weber M2, Maier B-O3, Siepmann U2, Gramm KI was significantly associated with low accordance (1) presenting a brief supplementary instrument asking J3, Nehring C4, Schwab R4, Delargardelle I5, Langenbach R5, concerning physical functioning, fatigue, pain and patients to report up to three additional S/P, and Beutel M E4 overall QL. In nurses, factors such as professional (2) investigating the nature and frequency of S/P 1Universitätsklinik Mainz, Medizinische Psychologie experience, specific training or regular supervision did reported using this new instrument. und Medizinische Soziologie, Mainz, Germany, not influence quality of ratings. Concordance with Methods: The supplementary instrument was used in 2Universitätsklinik Mainz, Interdisziplinäre Einrichtung patients regarding “appetite loss” was inversely a department of palliative medicine in patients who für Palliativmedizin, Mainz, Germany, 3Dr. Horst- associated with years of professional experience had just completed the QLQ-C15-PAL. It asks the Schmidt-Kliniken, Abteilung Palliativmedizin, (p=.028). Estimation of anxiety, which was significantly patient to list up to three S/P, that are not included in Wiesbaden, Germany, 4Universitätsklinik Mainz, Klinik more accurate by female nurses and physicians, in the QLQ-C15-PAL. The results were analyzed für Psychosomatische Medizin und Psychotherapie, estimation of anxiety which was significantly more qualitatively (by coding) and quantitatively Mainz, Germany, 5Klinikum Mutterhaus der accurate in male nurses and physicians and in (frequencies in each category). The qualitative analysis Borromäerinnen, Palliativstation, Trier, Germany estimation of physical functioning (p=.039), which was used the following steps: nearly perfect in males (r=.944) Our study revealed that (1) If the response concerned an S/P already included Aims: Palliative care of cancer patients should meet estimation of overall LQ of patients is difficult but fair in the QLQ-C15-PAL (e.g. ´pain in the foot´) it was their care needs. We aimed to develop a screening tool estimation of their specific LQ related problems is coded using a category indicating this (e.g. pain). for the identification of their physical, psychosocial and possible. Factors which influence this estimation have (2) If the response concerned an S/P NOT included in spiritual burden to enhance the process of fulfilling been identified. the QLQ-C15-PAL a coding system for ´additional S/P´ their needs. was used, employing either 48 existing symptom Methods: For the development of a distress categories (Homsi J, Walsh D et al. , SCC 2006) or questionnaire for palliative cancer patients PE 1.F18 additional S/P categories developed within this study. (“Fragebogen zur Belastung onkologischer Results: Among 373 patients, 191 patients (51%) Palliativpatienten” FBPP) we used proven methods of Perceived burden of family caregivers of reported at least one additional S/P; 315 in total. These scale construction: terminally ill cancer patients 315 responses were coded as 49 different S/P. Of these, (1) Analysis of existing distress questionnaires and 88 (28%) were S/P already included in the QLQ-C15- equivalent literature, Brogaard T1, Olesen F1, Neergaard M A1, Jensen A B2, Guldin PAL, and patients seemed to list them to provide more (2) item modification in a panel of experts, M-B1, Vedsted P1 detail (e.g., the location of pain). Almost half of the (3) a priori dimensioning and conception of a pilot 1University of Aarhus, Research Unit for General responses (153; 49%) were S/P not included in QLQ- form of the FBPP with 53 items. Practice, Aarhus, Denmark, 2Aarhus University Hospital, C15-PAL, most frequently edema (15), dizziness (13), These could be assigned to six categories: (Psycho- Department of Oncology, The Specialist Palliative Care diarrhea (12), cough (8), sweats (8), impaired cognitive )somatic problems, anxiety, shortage of information, Team, Aarhus, Denmark function (8), and existential problems (7). Finally, 36 ADL limitations, social problems and (11%) of the responses were not S/P but diagnoses, and existential/spiritual/religious burden. Further on we Background: International research shows that there 38 (12%) could not be coded. used some proven instruments for validity assessment. is a need to focus on the burden perceived by family Conclusions: This new, brief instrument gives Patients of three centres for palliative medicine take caregivers of terminally ill cancer patients. Thus, there additional insight into the nature of S/P experienced by part. In order to perform a Principal Component is a need to develop burden assessment tools. In an patients, and is thus a useful and recommendable Analysis (PCA), a sample size of 160 participants is intervention study of shared care between primary and supplement to the EORTC QLQ-C15-PAL. deemed necessary. specialised care for palliative patients, we indentified sessions Results: Up to now about one third of the patients the “Burden Scale for Family Caregivers” (BSFC). could fill out our pilot form (n = 68, age 39-85, 61% However, no Danish version was available and no data

(Friday) PE 1.F15 female). As heaviest burdens they marked somatic on reproducibility and responsiveness were available. symptoms of their illness (87% fatigue, 85% weakness) We aimed to make a standardised translation and

Poster Pain in older persons with severe dementia. and typical fears (65% of an excruciating dying, 59% of adaptation of the BSFC and to measure perceived Psychometric properties of the MOBID-2 Pain dependence). Spiritual and social problems burdened burden in a group of family caregivers of terminally ill Scale them relatively lesser (25% unanswered religious cancer patients at time of inclusion and at one month questions, 7% withdrawal of friends). follow-up. Husebo B S1, Strand L-I1, Moe-Nilssen R1, Husebo S B2, Conclusions: The FBPP assesses burden of cancer Method: We translated the BSFC following the WHO Ljunggren A E1 patients at the end of life. Its use may help to identify guideline for translation and adaptation of instruments 1University of Bergen, Public Health and Primary patients who require special palliative care (1. Forward translation, 2. Expert panel, 3. Back Health Care, Bergen, Norway, 2Red Cross Nursing interventions. Finally the PCA should lead to short and translation, 4. Pilot tests, 5. Final version). The Danish Home, Bergen, Norway reliable FBPP-scales. Using the developed questionnaire version of the BSFC was subsequently applied to a may enhance the quality of palliative care. group of family caregivers of terminally ill cancer Aim: To assess pain in older persons with severe patients, consecutively included from eight different dementia is a challenge due to reduced self-report hospital departments at the time of inclusion and at capacity. The Mobilization-Observation-Behaviour- one month follow-up. Intensity-Dementia (MOBID-2) Pain Scale is a nurse- Results: We ended up with an applicable Danish administered pain instrument to assess inferred pain version of the BSFC. Our data collection is still ongoing. intensity, which is based on patients’ pain behaviour in Conclusions: In the rigorous process of translating the connection with standardised, guided movements of BSFC according to the WHO guideline we experienced different body parts (Part 1), and pain behaviour related certain pitfalls concerning terms and words describing to internal organs, the head and skin registered on pain burden and care giving. These pitfalls and arguments drawings and monitored over time (Part 2). for following the WHO guideline when translating a Methods: To examine inter-rater and test-retest questionnaire will be presented. reliability for pain intensity, internal consistency, as Furthermore, preliminary BSFC scores for well as face-, construct- and concurrent validity of the approximately 30 family care givers at baseline MOBID-2 Pain Scale. Patients with severe dementia compared with scores at one month’s follow-up will be (N=77) were examined by 28 primary caregivers in presented together with preliminary psychometric clinical practice, who concurrently and independently properties.

58 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday)

PE 1.F19 Methods: AIO and AKS perform prospectively an the patients and their families, dragging problems from epidemiological trial including 2500 patients who are work along to the family after work and inability to get Prognostic factors for survival using the intended to be treated in adjuvant (1000) or palliative rid of the extra pressure. Troubles of this kind are interRAI PC in Iceland (1500) intention. 70 outpatient cancer centers take part unique in palliative workers. As a result we suggest a in the trial, 64 recruit actively patients. All patients will new concept “therapeutic distress” for describing in a Helgadottir S1, Sigurdardottir V2, Hjaltadottir I1, be followed for up to 5 years. In addition to oncologic more focused manner the psychological state of Gudmannsdottir G D1, Jonsson P V1 data sets comorbidity data for all patients are palliative workers. It differs from the apparently similar 1Landspitali University Hospital, Geriatric Department, documented and preliminary analysed focussing concept of “compassion fatigue” (Figley) by being Reykjavik, Iceland, 2Landspitali University Hospital, palliative care aspects. broader and more complete than empathic fatigue that Palliative Care Unit, Reykjavik, Iceland Results: Acutally 2047 Patients are included. 1156 is focused mainly on identifying with the suffering patients received a pallitative intended Chemotherapy. patient. A brief questionnaire was designed in order to Aim: A lot of research has been done on prognostic Only 45 patients (3.9%) with numberous comorbidities explore, diagnose and assess therapeutic distress, factors for survival but this is the first published (ChS > 2) qualified for a standart chemotherapy. 280 referring to specific problems of palliative workers. research using the interRAI PC, which is an assessment Patients died during observated time. Multimorbid Preliminary results are presented. The questionnaire tool that has been developed for palliative care patients. Patients were not overrepresented in this subgroup. was used in developing a supportive intervention The objective of this study is to identify potential Comparing dead and alive patients concerning program for workers in palliation. A program of this prognostic factors that affect survival in palliative care comorbidity (ChS) no relevant diffenences between kind will enhance awareness of that specific issue and patients using the interRAI PC and also to see how good these groups could be found. will refer to a set of skills intended to alleviate Icelandic health care professionals are at predicting Conclusion: Further items must be assessed in AIO therapeutic distress when the first signs appear and to survival. database to investigate end of life situation of colon prevent its emergence even before the initial signs are Methods: Prospective cohort study using patients, that cancer patients. detected. were enrolled in our palliative care service between 15th october 2003 to 15th april 2004. InterRAI PC was used in data gathering. Statistical analysis was done PE 1.F22 PE 1.F24 with Kaplan-Meier and Cox Proportional Hazard model in SPSS. Comprehensive Geriatric Assessment (CGA). A Validation of the Spanish version of the ESAS Results: Of 124 patients (64 women and 60 men), five new approach to subdivide elderly patients (Edmonton Symptom Assessment Scale) are still alive. Mean age was 71 years old. 116 patients according to their functional parameters - had cancer and eight had miscellaneous. The most Conception of IN-GHO®-registry Carvajal A1, Centeno C1, Portela M d l A1, Martinez M1, common cancers were GI and abdominal cancer (33%) Urdiroz J1, De Santiago A1 and lung cancer (28%). Median survival was 41 days Freier W1, Honecker F2, Wedding U3, Papke J4 1Clinica Universidad de Navarra, Palliative Care, (95% CI 30-52). Further analysis will be presented. 1Practice for Oncology and Palliative Medicine, Pamplona, Spain Conclusion: Statistical analysis is not finished and this Hildesheim, Germany, 2Universitätsklinikum Hamburg- is preliminary data. No conclusion can be made at this Eppendorf, Arbeitsbereich Geriatrische Onkologie, The Edmonton Symptom Assessment Scale (Bruera E., point. Hamburg, Germany, 3Universitätsklinikum Jena, 1993) consists of ten graphic numerical scales to Forschungsgruppe Geriatrische Onkologie, Jena, examine frequent symptoms present in cancer patients. Germany, 4Practice for Internal Medicine and Palliative A Spanish version has not been validated as yet. PE 1.F20 Care, Neustadt / Sachsen, Germany Aim: Validate the Spanish version of the ESAS in a group of advanced stage cancer patients. Assessing the competency of lay community Aim: Age is an insufficient parameter to define elderly A sample group of advance-stage inpatients and caregivers to provide palliative care in a home patients (1). A selection of easy practicable geriatric outpatients were selected from the Oncology based setting assessments is investigated to subdivide elderly patients department. The patients completed the ESAS on day 0, in those who sustain a full dosed medical treatment day 0 + 4 hours and on day 2. On day 0, the RSCL DeFilippi K1, Cameron S1 from those who need a dose reduction or those who (Rotterdam Symptom Check List) was also filled in. 1Hospice Palliative Care Association of South Africa, should be provided to palliative care professionals. Reliability was studied by determining internal Patient Care, Cape Town, South Africa Methods: Inclusion criteria for IN-GHO registry were consistency (Cronbach’s Alpha) and stability using the age older then 70, malignant disease and a need for a test-retest. The concurrent validity with the RSCL was Aim: As part of a pilot project to expand the reach of therapeutic decision. Consenting patients were assessed also studied, as was discriminant validity (Karnofsky<70 palliative care into poorly resourced communities, it with a comprehensive geriatric assessment (CGA) and >70 and inpatients and outpatients). Factorial was necessary to assess existing skills of lay community including Karnofski performance scale (KPS), Charlson analysis, sensitivity and feasibility were all measured. caregivers providing home based care without comorbidity scale (CHS), Barthel Index (ADL), Internal consistency of the survey was measured for 171 professional supervision. Instrumental Activities of Daily Living Score (IADL), patients by means of Cronbach´s Alpha, obtaining a Method: A Caregiver Competency Assessment Tool was Mini Mental State Examination (MMSE), Timed-up-and coefficient of 0.75 (IC 95%: 0.70 to 0.81). The test-retest developed to assess a range of competencies key to the go Test (TUG) and Structured Clinical Interview for was performed for 146 patients, where Spearman’s provision of palliative care at home. These included Depression (SKID). Clinical follow up is sceduled after correlation on individual items was between 0.65 and physical care, communication skills, end of life care, 8-10 weeks- and finally after 6 month to investigate 0.94. Factorial analysis was applied with oblique bereavement, infection control and record keeping. It benefit or suffering of the patient due to the initial rotation in 171 patients, with three distinct was found that overall scores of the 30 caregivvers from therapeutic decision. components found in the survey. Concurrent validity 4 community organisations, were low. The average for Results: 1600 patients actually are included into the of the ESAS with the RSCL was measures in 90 patients, physical care was 55 per cent, communication skills 45 registry. CGA is accepted in patients and physicians due correlating 7 items from the ESAS with corresponding and record keeping 25. These results informed the to the possibility to delegate the 20 minutes taking items from the RSCL and correlations of between 0.55 development of a training programme focussed on procedure to medical staff. Preliminary evaluations of and 0.76 were found. The survey’s discriminant validity building key palliative care skills, after which an patients with haematological illness show a predictive was measured in 171 patients with the Kruskal-Wallis experienced palliative care nurse supervised the value of CGA (2). test, to see if the scores on the ESAS were different caregivers for the following 18 months and conducted Conclusions: CGA is a promising tool for a better according to different functional states and a significant monthly in-service training sessions. therapeutic decision of elderly patients. Potentially difference (p<0.005) was found between groups. The Results: Results to date indicate a significant palliative care aspects could earlier be involved in survey’s sensitivity was measured using the Wilcoxon improvement in caregiver competency and confidence. therapeutic strategy. test for the ESAS on days 0 and 2, where a significant An independant re-assessment, using the same tool, is difference (p<0.05) was found for the majority of currently being conducted and final results will be symptoms. sessions included in the presentation. A parallel process, using PE 1.F23 The Spanish version of the ESAS is reliable, valid and the African Palliative Care Association (APCA) Palliative sensitive for the detection of changes in a patient. (Friday) Outcome Scale (POS), will dertermine patient and Taking care of the caretaker: The syndrome of

family perceptions of the quality of care and support. therapeutic distress Poster Conclusion: In poorly resourced areas lay caregivers PE 1.F25 are vital in the provision of palliative care because of Barak F1, Ostrowsky L2, Kreitler S3 the scarcity of professional health care workers and the 1Barzilay MC, Ben Gurion University of The Negev, Functional dependent measure for cancer scale of the HIV/AIDS epidemic. It is essential to assess Oncology, Ashkelon, Israel, 2Leumit Health Found, patient with some paraplegia and enhance their competence in order to promote Home Care, Ashdod, Israel, 3Sheba Medical Center, Tel increased access to palliative care. Aviv University, Psychooncology Research Unit, Tel Abe P K1 Hashomer, Israel 1Chiba Cancer Centre, Ortopedic Surgery and Rehabilitation Oncology, Chiba, Japan PE 1.F21 Concerns about QOL problems of health professionals are increasing recently and were interpreted in the Research aim: It is crucial for dignity of human-being End of life informations obtained by a treatment frame of the known concept of burnout at work and including advanced or far advanced cancer patient to survey. Preliminary data of AIO and AKS Colon were found to be related to: load at work, move with independently. But it is difficult to move Cancer Registry communication difficulties in team, low wages and independently because of paraplegia since they had lacking information. The typical burnout syndrome metastases at spine or spinal cord. Therefore we studied Freier W1, Papke J2, Fiechtner H3, Marschner N4 comprises of tension, irritability, depersonalization, more comfortable or easy way of moving for cancer 1Practice for Oncology and Palliative Medicine, thoughts about “escaping” the profession, etc. Our patient with some paraplegia. Hildesheim, Germany, 2Practice for Internal Medicine view is that this description does not stress enough Study design and method: We selected patients with and Palliative Care, Neustadt / Sachsen, Germany, special efforts of therapy provision that requires clearly advanced or far advanced cancer in the field of 3Oncological Center, Stuttgart, Germany, 4Oncological treating the individual as a whole. This issue is palliative care in our institute from April 1998 to March Center, Freiburg, Germany especially acute in the palliative field. For a deeper 2008. They had any level of paraplegia because of their study of the issue, pilot interviews were conducted with bone metastases of spine or spinal cord. We set a series Aim: Using the AIO / AKS treatment database of colon health professionals in different palliative units. Most of instruments such as bed with motor assisted, transfer cancer patients informations about end of life in this referred to issues, such as the distress of identifying board, module type wheel chair & a cushion which disease should be extracted. Charlsonscore (ChS), with the suffering patient, helplessness in confronting prevent bedsore and skilled support staff. At first, we assessed in the database, was analysed. suffering, the necessity to communicate bad news to put wheel chair by bed side where the patient lain.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 59 Poster sessions (Friday)

Then we explained and instructed how to use transfer PE 1.F28 on Ph, on Dg and BeCo <80%, namely because ONC board to move to transfer. And we practiced transfer did not specify a priori reasons and goals; site-specific with transfer board with the patient. Finally, we had “Has the patient been more confused lately?” A calibration phases of raters seem needed. been evaluated by Functional Dependent Measure for prospective study into the sensitivity of SQiD Conclusion: This novel, developing, instrument Cancer Patient with Paraplegia (F.D.M.C.P.P.). The score (Single Question in Delirium) screening carries the potential to detect Sy Mgmt adaptations in of F.D.M.C.P.P. were from 0 (full dependent) to 100 (full clinical trials, to evaluate clinical practice guidelines, independent.). Sands M B1, Hartshorn A J2, Dantoc B P3, Ryan C J4 and to establish standards of best Palliative Cancer Care Results: Approximately ninety percent of objective 1University of New South Wales, Palliative Medicine, for anti-cancer treatment trials. patients succeed to use the way we showed them. Some Sydney, Australia, 2University of New South Wales, patients could transfer with a board from bed to wheel Sydney, Australia, 3Westmead Hospital, Sydney, chair independently that depends upon their sitting Australia, 4University of Sydney, Sydney, Australia PE 1.F30 ability level. The score of F.D.M.C.P.P. were parallel to dependency of functional level at this time. Aim: To test the sensitivity of a single question in Use of the consciousness scale for palliative care Conclusion: We set some knowledge, instruments, delirium screening (SQiD) against psychiatric interview as a prognostic factor skilled staff and practice. There was no need to change (ψI). The Confusion Assessment Method (CAM), the physical ability of cancer patients in the field of Memorial Delirium Assessment Scale (MDAS) and the Ferraz Gonçalves J A1, Gomes R1, Pinto C1, Rodrigues N1 palliative care. It is very important for advanced or far Mini-Mental State Examination (MMSE) were also 1Portuguese Institute of Oncology, Palliative Care Unit, advanced cancer patients because of their time shortage tested against the SQiD and ψI. Porto, Portugal and limitation of physical functional disability. We Method: On a nominated day of multiple weeks, showed clearly in this situation by concrete score of consecutive admissions to a university affiliated Aim: A consciousness scale for palliative care (CSPC) F.D.M.C.P.P. which we developed. oncology, inpatient service, were screened for delirium. was recently validated. In this study we try to find out if Of 33 admissions, 21 patients participated in the study. the levels of the scale have prognostic value. Consent was obtained and the single (SQiD) question: Methods: We collected retrospectively the data PE 1.F26 “Do you think [name of patient] has been more recorded in the patients’ files of our unit. The data confused lately?” was put to the patients friend or analysed were only from ECOG 4 patients, as other Caregivers´ communication with patients about family member. The CAM, MDAS, and MMSE were patients has a high probability for a normal illness and death: Initial validation of a scale then applied. True cases of delirium were identified consciousness level. The method of Kaplan-Meier to according to psychiatric interview (ψI) by a blinded determine the survival curves and the Breslow test to Bachner Y G1, Davidov E2, Carmel S1 investigator. compare the length of survival were used. 1Ben Gurion University of the Negev, Sociology of Results: The SQiD was positive for delirium in 8 out of Consciousness level scale: Health, Beer-Sheva, Israel, 2University of Cologne, 19 patients. The ψI identified 5 true delirium in 5 cases. 1 Awake Cologne, Germany The SQiD had sensitivity and specificity of 80% (95% 2 Awakens when called by his/her name and keeps CI 28.3% to 99.49%) and 71% (95% CI 41.90% to awaked during conversation Caregivers of terminal cancer patients experience 91.61%) respectively. The CAM had a positive predictive 3 Awakens when called by his/her name but falls asleep substantial communication difficulties with their loved value of (PPV) of 67%. The SQiD had a PPV of 50%. The during conversation ones about their illness. Existing communication scales SQiD and ψI had kappa correlation of 0.431 (p= 0.023). 4 Reacts with movement or brief eye opening, but focus on communication as perceived by the patient The CAM and ψI had a kappa value of 0.37 (p=0.050). without eye contact, when called by his/her name and do not include items that refer to his close death. Conclusion: There is an urgent need to find practical 5 Reacts to trapezius muscle pinching The current study describes the development and initial methods of improving delirium detection. The SQiD 6 Does not react. validation of an instrument aimed at measuring has potential clinical utility as a simple screening Results: There were 421 observations in 135 patients; caregivers’ communication with patients about their question that could be incorporated into the admission in 261 (62%) of the observations the patients had an illness and death. Two hundred thirty-six bereaved routine of hospitalised patients. A further important ECOG performance status of 4. From the patients primary caregivers of cancer patients were recruited finding was that our study showed the CAM had only ECOG 4, 48 (59%) were male and 33 (41%) female. The over a period of 18 months. The psychometric 40% sensitivity in the hands of minimally trained median age was 69 years (23 to 87). There were 256 properties of the scale were explored by confirmatory clinical users. This contrasts the excellent sensitivity of observations assessable: level 1 - 175; 2 - 16; 3 - 33; 4 - factor analysis. Results provided support for a one factor the CAM when used by trained research staff. A larger 17; 5 - 10; 6 - 2. solution. The discriminant and convergent validity of sample size would allow further testing against ψI and As the numbers in most levels were very low for the responses to the scale were also supported. Future could investigate the sensitivity of the SQiD in analysis, levels 1 and 2, 3 and 4, 5 and 6 were merged in studies should further establish the validity of the scale identifying hypo-active delirium and the specificity of 3 groups. The analysis of the 3 groups revealed a with larger sample sizes and different populations of the SQiD in distinguishing delirium from depression. median survival of 24 days (CI 95% 18-30) for the first caregivers of patients with other terminal diseases. group, 11 days (CI 95% 6-16) for the second and 3 days (CI95% 1-5) for the third (p <0,001). PE 1.F29 Conclusion: This analysis showed that the PE 1.F27 consciousness levels of the CSPC have prognostic value Symptom management performance checklist: when merged in 3 levels. A much higher number of Clinical indicators of a pressure ulcer in patients Development of a new assessment instrument of observations will be necessary to see if all levels of the in palliative care: The actions of nursing home oncologists´ interventions scale are relevant to that goal, what can be a different care kind of validation of the scale. Hess J1, Omlin A1, Blum D1, Köberle D2, Oberholzer R1, Cerqueira Gomes L1, Bolzan M d F1, Barbosa V L d S1 Strasser F1 1National Cancer Institute, Rio de Janeiro, Brazil 1Oncological Palliative Care Medicine, Oncology & PE 1.F31 Palliative Care Center, Cantonal Hospital St.Gallen, Pressure ulcer (PU) is defined as injury to the skin or in St.Gallen, Switzerland, 2Oncology, DIM, Cantonal How should meaning in life be assessed? A adjacent tissue, usually on a bone prominence as a Hospital, St.Gallen, Switzerland systematic review result of pressure or pressure in combination with shear force and the force of friction. The risk factors are: Aim: The inclusion of patient-reported outcomes - Brandstätter M1, Kögler M1, Borasio G D1, Fegg M1 external factors - pressure, friction and shear and symptoms (SY) and clinical syndromes - in routine 1Munich University Hospital, Interdisciplinary Center internal factors - tissue perfusion, age, mobility, activity, clinical decision-making practice of advanced cancer of Palliative Medicine, Munich, Germany level of consciousness, excessive moisture, nutrition, patients by oncologist (ONC) gains importance. Except sessions hydration, chronic diseases such as diabetes and tape-recorded and videotaped interviews, currently no Background: Meaning in life has become increasingly cardiovascular disease. The cancer treatment - surgery, assessment system monitors physicians´ SY important in Palliative Care. If patients with terminal

(Friday) chemotherapy and radiotherapy, as well as the management (Mgmt) interventions. To develop a SY illnesses are able to maintain or regain meaning in life, malignant wound, are also important factors in Mgmt performance checklist (SyMPeC) for care and the they are more likely to experience their remaining

Poster assessing risk for developing PU. They are classified in E-Mosaic study (NCT00477919). lifetime as worth living. Psychotherapeutic stages from 1, 2, 3 and 4 according to the layers of tissue Methods: SyMPeC is based on current data on SY interventions in palliative care aim to improve patients’ involved. This study aims to evaluate the performance prevalence in advanced cancer patients and lists of meaning in life. The present systematic review looks at of nursing actions, the patients in palliative care who typical interventions from textbooks of palliative care published instruments for meaning in life assessment. developed cancer PU, through the clinical indicators in (PC) and oncology. SyMPeC includes data from Methods: Key words were meaning in/of life, purpose the sector of home care. In the period from January to anonymised medical charts, written prescriptions of in/of life, sense in/of life, meaningful/purposeful life, September 2008 in a palliative care unit of cancer - ONC, and medical reports. It is developed by consensus personal meaning, meaning system, meaning/ful Brazil. The study is a quantitative. Data were collected processes of ONC & PC physicians including data from existence. Electronic databases were searched up to by the instrument and presented in tables and graphs. a variety of patients (SY priorities) and ONC (variable August 2008: Ovid Medline 1950-2008, Embase 1988- During the period there were 423 pressure sores. These documentation practice). Finally, inter-rater reliability 2008, Cinahl 1988-2008, and PsychInfo 1806-2008. 127 in stage 1, 197 in stage 2; 84 in stage 3 and 15 in was assessed. Retrieved studies were evaluated using the criteria of stage 4. With the actions of nursing 20 pressure ulcers Results: SyMPeC consists of 4 hierarchical levels: the Scientific Advisory Committee of the Medical were healed, 200 improved from the first assessment, L1: Any intervention for pain, depression, Outcomes Trust. 39 worsened and 164 remained the same characteristics anorexia/cachexia, fatigue, dyspnoe, nausea, or other. Results: The search strategy yielded 4997 hits. Starting of the first assessment, the majority in stage 1 and 2. L2: For each symptom, any pharmacological (Ph), in the 60s, there is a steady increase in newly published We can conclude that the actions of nursing had a good diagnostic (Dg), or behavioral/counseling (BeCo) or revised instruments per decade. Overall, more than result, because even with low rate of healing, the intervention. 50 different MiL instruments were identified. They aggravation of pressure ulcers was prevented. Well L3: Intervention details (e.g., drug choice, diagnostic either measure the extent of perceived meaning in life, related to the debilitated clinical status of patients who test). the specific sources of meaning, meaning structure, are followed by home care, had maintained a large L4: Detailed description (e.g., dose titration, partial search for meaning in general as well as search for number of PUs staging 1 and 2, favoring the comfort rotations, specific sub-tests). During development, 15 meaning in illness. Meaning sources are most often and quality of life of patients. charts were reviewed. assessed nomothetically, i.e. between 7 and 26 different Inter-rater reliability among 3 PC physicians assessing 5 sources of meaning are provided by the researcher and adult cancer patients (3 GI, 1 NSCLC, 1 H&N; main rated by the patient. Some newer instruments allow for symptoms: pain [n=3], anorexia [2], nausea [2], fatigue, patient-generated assessment of meaning in life anxiety, dyspnea [1]) was >95% for L1 and for L2-4 only (idiographic method).

60 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday)

Conclusion: Meaning in life is operationalized in - Barthel (0-100): 38.18 (1st day), 33.17 (10th day), STAS scores, with non-significant reductions in different ways: Some authors conceptualize meaning in 35.17 (20th day), 33.95 (30th day). individual item scores. In contrast, the symptom life as unidimensional, while others postulate bi- und - Pfeiffer test (0-10): 3.2 (1st day); 3.5 (10th day), 3.82 prevalence of patients remained unaltered throughout multidimensional constructs. Wong’s model (20th day), 3.83 (30th day). the evaluation. Male patients exhibited greater overall comprising a cognitive, emotional and motivational - Reduced Zarit index (7-35): 24.87 (1st day), 21.88 reductions in STAS scores (3.27, p=0.029) as opposed to component of meaning in life proves useful for a (10th day), 18.97 (20th day), 16.88 (30th day). female patients (0.47, p=0.597). clearer understanding. Idiographic methods seem to Conclusions: There was a 56.37% losses throughout Conclusions: The CPCT under review reduced the allow for a more individualized assessment of this the study, all by death. There was a small decrease in physical distress of patients, but there is room for highly personal construct. functional ability, measured by the Barthel scale, from improvement, given that symptom prevalence is 38 to approximately 33%. unaltered. Explanations for such findings include lack The rate of errors by cognitive impairment, measured of awareness of the present service to other PE 1.F32 using the index of Pfeiffer, increased from 3.2 to 3.8 stakeholders, problems with access to relevant throughout the study. medications and suboptimal medical input in the The assessment of specialist palliative care need: The overloading of the caregiver decreased significantly modus operandi of the team. Future research could A common language throughout the study (Zarit I. from 24.8 to 16.8). address gender differences in response to treatment. References: (1) Higginson, I.J. 1999, “Evidence based Sutherland J L1, Midgley C2 palliative care: there is some evidence - and there needs 1Saint Francis Hospice, Havering-atte-Bower, United PE 1.F34 to be more”, British medical journal, vol. 319, no. 7208, Kingdom, 2Saint Francis Hospice, Essex, United pp. 462-463. Kingdom SPARC - A screening tool which identifies holistic needs of cancer patients The Manual of Cancer Services Standards & NICE PE 1.F36 Guidance for Supportive & Palliative Care require that Keenleyside G1, Boland J1, Rogers E1, Noble B1, Ahmedzai S specialist palliative care need is assessed holistically and H1 Study to investigate to what extent palliative that the assessment includes physical, psychological, 1University of Sheffield, Academic Unit of Supportive care units in London and the SouthEast of social, spiritual, information and carers’ needs. The Care, Sheffield, United Kingdom England are following the European Association recommendations also state that this full range of for Palliative Care guidelines for the holistic need should reviewed and assessed by the full Aims: To identify holistic supportive and palliative care management of malignant bowel obstruction multi-professional team at weekly multi-disciplinary needs in cancer patients at all stages using the screening team meetings. tool SPARC and other standard quality of life and Gough S L1, Gough N J2, Davies A3 In 2005 the Saint Francis Hospice community team symptom scales. 1Pembridge Palliative Care Unit, London, United began using an adapted model of the Support Team Method: We conducted a prevalence survey of holistic Kingdom, 2Kings College Hospital, London, United Assessment Schedule, otherwise known as STAS, to needs in hospital inpatients and outpatients. Cancer Kingdom, 3Royal Marsden Hospital, Sutton, London, support the implementation of these national patients aged over 18 years were invited to complete United Kingdom recommendations. SPARC, a 45 item screening tool for holistic needs. This The Support Team Assessment Schedule was developed covers: physical symptoms (21 items), psychological Aim: Malignant bowel obstruction (MBO) is a in 1993 by Irene Higginson as a clinical audit tool, in needs (9), religious/spiritual (2), independence/activity distressing complication of certain types of advanced response to a developing requirement for data to be (3), family /social (4), treatment issues (2), cancer (eg. gastrointestinal, gynaecological). In 2001, made available nationally to measure the level & information/communication (3), personal affairs (1). the European Association for Palliative Care (EAPC) quality of palliative care provision. At Saint Francis an Patients also completed EORTC QLQ-C30 and other published a set of clinical recommendations on the adapted version of the tool was implemented by the instruments if reporting specific symptoms. management of MBO based on the available evidence community palliative team to establish a uniform Results: 326 patients (55% female; 189 outpatients, in the literature and also “expert opinion” from leading standard of assessment of specialist palliative care need; 137 inpatients) took part. Performance status: 0=6.4%, palliative medicine physicians. The aim of this study to provide a framework for the assessment and review 1=50%, 2=16%, 3=24.5%, 4=3.2%. 64% were receiving was to determine adherence to the EAPC of patients at the weekly multi-disciplinary team chemotherapy, 29% radiation therapy, 6% hormone recommendations amongst palliative care services in meeting and rationale for decision-making. therapy. Many patients had co-morbidities including London and the South East of England. As a result of the success of the community team, heart, lung and kidney disease, arthritis, diabetes. 80% Method: All (148) adult palliative care services ( ie. demonstrated by an end of year audit and enhanced had no preference between SPARC and EORTC QLQ- hospice inpatient units, home care teams, hospital multi-professional team working, a decision was made C30; of the rest, 60% preferred SPARC and 40% EORTC. support teams) in London and the South East of to roll the tool out across the organisation. A unified Patients had significant symptom load: pain (57% a England were contacted, and asked whether they had standard of assessment across the organisation provides little-very much); weakness (76%); tiredness (88%); guidelines on the management of MBO, and (if so) a common language and ensures that all patients, in drowsy during day (82%); problem sleeping at night whether they could send the investigators a copy of whatever department they are being cared for, are (70%). Other issues identified: feeling anxious (70%); these guidelines. The local guidelines were compared to assessed and reviewed holistically, multi-professionally low mood (60%); life is not worth living (10%); the EAPC recommendations by 2 independent and against the same criteria. worrying thoughts about death and dying (40%); investigators using a specially developed proforma. The Using STAS in this way also provides an excellent ability sexual problems (20%). 50% were bothered by losing areas reviewed included investigation, surgical to demonstrate the appropriate use of specialist independence and 70% by inability to do household management, medical / pharmacological management, palliative care services and a means of demonstrating tasks. 80% were worried about effects of illness on and supportive care (eg. fluid replacement). the outcomes and quality of services. family. 40% were worried about side-effects and 50% Results: The local guidelines have now been received, about long-term effects of treatment. and are being reviewed by the investigators. This review Conclusion: SPARC is well accepted by cancer patients process will be completed by the end of November PE 1.F33 at all stages. It identifies a very broad range of holistic (2008), and statistical analysis completed by the end of needs. It is now the standard assessment tool in our December (2008). It appears that the guidelines vary Have the functional state and the mental state of cancer network for all patients at key stages of their from unit to unit, with some agreement amongst patient influence on the overload of caregiver illness. A training programme and manual to use SPARC neighbouring units, and some agreement with the during the staying in a palliative care unit? is being prepared. EAPC recommendations. Funding: Charity and pharmaceutical company. Conclusion: The study will provide evidence of the Gil O T1, Irazábal I1, Blanco B1, Arias M I1, Serrano R1, current strategies for management of MBO in the South Dones M1, de Luis Molero V J1 East of England, and particularly the influence of the 1Fundacion Instituto San Jose, Palliative Care Unit, PE 1.F35 EAPC recommendations on the management of MBO sessions Madrid, Spain in this region of the UK ( and probably the whole of the

Symptom management by a community UK). (Friday) Introduction: One of the reasons for admission to a palliative care team This study was funded by the NHS.

hospital PCU is caregiver burden. This time may Poster coincide with the increasing degree of dependence of Abela J1 the patient or with the deteriorating of mental state. 1The Malta Hospice Movement, Balzan, Malta PE 1.F37 The admission to a hospital PCU may represent for the main caregiver an improvement in their perception of Aim: Assessing the effectiveness of symptom Prescribing and monitoring of corticosteroid use overload. management by a community palliative care team within palliative care - An audit Objectives: To assess the degree of functional (CPCT). dependence and mental state of the patient, and Method: There are “difficulties in applying an Fletcher A1, Murray A2, Hodgson A2, Wiseman J2 overloading of the primary caregiver at admission. evidence-based approach to palliative care” (1). 1Royal Bolton Hospital, Bolton, United Kingdom, To verify if there is relation between these variables at Research in palliative care (PC) is controversial and 2Wigan and Leigh Hospice, Wigan, United Kingdom the time of entry and along its evolution. difficult to carry out. Evaluation is an alternative Method: Evaluation by Barthel scale (functional method to strengthen the evidence base of PC. Hence, a Background: Corticosteroids have several indications dependence), Pfeiffer index (cognitive impairment) and service evaluation was carried out to see whether the within palliative care and dose depends on the reduced Zarit index (overloading of the caregiver) on CPCT was being effective. A modified version of the indication. Due to potential suppression of the days 1st, 10st, 20st and 30st of the hospitalization. Support Team Assessment Schedule (STAS) was used, adrenocortical axis and risk of side effects, doses and Inclusion criteria: All patients admitted. after comparison with other tools clearly showed that it reducing regimes need monitoring. Exclusion criteria: was the most appropriate to use in a community Aims: To review steroid prescribing in a hospice and 1) Patient in agony. setting. During a predefined time period of two and a compare with guidelines and literature. To develop 2) Refusal / Absence of the caregiver. half months, all new cases referred for community PC guidelines and care pathway for use when commencing 3) Refusal of the patient. were included in the evaluation. The STAS was steroids and re-audit following their implementation. Criteria for abandonment: delivered at referral, and subsequently every two weeks To investigate the use of the pathway within the 1) Death. for a total of three assessments. community and hospitals. 2) Discharge from hospital. Results: Of the 56 newly referred patients, only 34 Method: Retrospective review of case notes of 50 3) Transfer to another center or home. managed to complete three assessments. The STAS consecutive discharges and deaths. Inclusion criteria Results (preliminary): Average scores in the different scores of these 34 patients were analysed. There was a were malignant disease and use of steroids. Data scales along the income: significant (1.7, p=0.039) reduction in overall mean collected included demographics, dose of steroid,

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 61 Poster sessions (Friday)

review dates documented and completed, gastric record for the last 3 months of life. 22 variables were Method: The board of the association finds standards protection, osteoporosis prophylaxis and blood glucose recorded: Background information and suggested for social workers in other areas of health care and monitoring. quality indicators from the national Standard for submits a proposal for standards to the associations Results: Median age 71 years (range 35-93). 16 patients Palliative Care (2004). annual meeting. A smaller group meets to discuss the had a malignancy and were taking steroids during Results: The pts had on average 2.6 (1-10) admissions importance and the purpose of such standards. During admission. The most common diagnoses were and 23.3 days in hospital; the last admission lasted 13.3 the following meeting 2007 the standards were colorectal carcinoma (25%) and prostate carcinoma (1-49) days. 88.5% were admitted from home. Each presented for all members. After a new discussion the (25%). Anorexia (31%) and nerve compression (19%) patient was attended by 2-17 different doctors, on standards were approved as qualities criteria for the were the most common indications however this was average 7.5. 42 pts were seen by a physiotherapist, social workers in palliative care. unclear in 4 patients (25%). Review dates were chaplain and/or social worker. 13 pts were referred to Results: The standards emanate from the WHO:s documented in only 5 patients. Despite this, doses were the pain clinic, 22 to a specialist palliative care service Declaration for Palliative Care. The standards contain reviewed appropriately in accordance with perceived nearby, and 45 to the hospital’s ambulatory support issues like: ethical questions and way of meeting patient best practice in all but 2 patients. 3 patients suffered nurses. 38 pts had a family meeting. No patient had an and loved ones, competence, measures, teamwork, from oral candida and 2 developed oedema. Blood individual care plan, and a joint meeting with the authority, education, supervision and research. glucose monitoring occurred in only 2 patients. primary care services was held only once. 24 pts had Conclusion: Using similar standards for all social Osteoporosis prophylaxis was indicated in 1 patient completed at least one symptom assessment. Only 3 workers in health care, can give the social worker a however not prescribed. Gastric protection was not records had a doctor’s note with a long term plan for platform to increase the quality of the work with the prescribed in 4 patients (25%). symptom relief. patient and the loved ones. It is also a document for the Conclusion: Review dates are rarely documented and 33 pts had a blood sample drawn during the last 48 employer when staff is recruited. For the newly monitoring or treatment of side effects is infrequently hours, while chemotherapy and iv nutrition had been employed social worker the standards may be helpful to completed, placing patients at risk. Clinical guidelines discontinued in almost all cases. Imminent death was understand what social work in health care comprises. and a care pathway have been agreed within the recorded in 28 cases; in 20 cases the patient was The standards can also be a tool to ensure quality of the multidisciplinary team and implemented within the informed. Medications for symptom relief in the dying social work throughout the whole country. hospice. We intend to re-audit and with these results could be evaluated in 66 cases and had been given in investigate the possibility of transferring the guidelines 61. 67 pts died in the presence of their close ones; 6 and care pathway to the hospital setting. died alone. PE 1.F43 Conclusion: Several areas for improvement were identified. More attention should be given to symptom Managing agitation at the end of life: How much PE 1.F39 relief earlier in the disease trajectory. The staff also sedation is required in different care settings? needs to improve their skills in recognizing the dying Evaluation of a bereavement evening service in a phase and let this observation guide all further actions. Auth-Eisernitz S1, Hugel H1, Corcoran G1 London hospice 1University Hospital Aintree, Aintree Palliative Care Team, Liverpool, United Kingdom Heal R1, Hartley N A2 PE 1.F41 1St Christopher’s Hospice, Quality Assurance, London, Aim: To assess the most commonly used types and United Kingdom, 2St. Christopher’s Hospice, Supportive Audit of discharge planning and delays in doses of sedative medication given for control of Care, London, United Kingdom discharge of in-patients at a specialist palliative agitation in the last 24 hours for patients who died in a care unit hospice, a hospital advisory and a community setting, Bereaved relatives are invited by a London hospice to according to the Liverpool Care Pathway of the Dying attend an evening event about 3 months after the death Frampton E C1 (LCP). of the patient. This event consists of a talk by a member 1Duchess of Kent House, Palliative Medicine, Reading, Method: Retrospective case note review of 87 patients of the psychosocial team on common responses to United Kingdom (41 female), who died within the catchment area of a bereavement, followed by small group discussions specialist palliative care service (n=30 on specialist facilitated by members of the hospice staff or a Palliative Care patients have complex needs, which palliative care unit, n=27 on wards of large university bereavement service volunteer. change as they progress through their disease journey. hospital and n=30 community setting). Data below Bereaved relatives (n=105) who attended 5 monthly Discharge planning involves many different factors, indicate percentage of patients, median dose of syringe bereavement evenings were given a feedback and trying to co-ordinate and plan a safe and successful driver medication over 24hours, breakthrough questionnaire to complete. All those who were invited discharge can often be frustrating. frequency. but did not attend (n=436) were sent another Aim: The aims of this study were: Results: The most commonly used drug for sedation questionnaire to find out the reason for their non 1) to examine discharge planning in a specialist was midazolam in all three settings. More patients attendance. 59 (56%) participants responded as did 184 Palliative Care unit, and (83%) on the specialist unit and the community setting (42%) of those who did not come. Most participants 2) to ascertain what, if anything, is delaying discharges. (73%) received midazolam than in the hospital setting said their reason for coming had been to meet others in Methods: A prospective survey of all in-patients in a (22%) in the last 24 hours of life. Median midazolam a similar situation and to share experiences of Specialist Palliative Care unit was carried out over a two doses over 24 hours were low in all three settings (15mg bereavement (n = 41 or 69%). Nearly half (n=28 or 47%) month period. Documentation of discussion of palliative care ward, 10mg community, 10mg hospital). said that they had ´just come along not knowing what discharge planning, requirements necessary for 66% patients on the specialist unit required additional to expect´. Many commented that the talk helped discharge to take place, planned and actual discharge breakthrough doses of 2.5-5mg Midazolam to treat participants to feel that their grief reactions were dates with reasons for any variation in dates were noted. agitation, 23% in the community and 15% in the normal and it lessened their sense of being alone in Results: A total of 39 in-patients were included in the hospital setting. Levomepromazine was the second their bereavement. audit, and mean length of admission was 17 days. 20 most commonly used sedative. Similar to midazolam, The options most frequently selected by non attenders patients had their future care planning discussed doses were low with medians of 25mg, 12.5mg and as reasons for not coming were ´I did not think it would regularly. Discussion was not appropriate in 7 patients 12.5mg over 24 hours respectively. Breakthrough doses be helpful to me´ and ´I am already receiving support who had been admitted for end of life care. 18 patients of 6.25mg for control of agitation were given in 20% of from elsewhere´. 92% of respondents who did not were discharged on the planned date, and 12 patients patients on the specialist unit, 3% in the community come thought there was nothing the hospice could had their discharges delayed. and none in the hospital. have done to make it easier for them to attend. There Conclusion: A significant number of patients (31%) Conclusion: This audit highlights that agitation at the were a few suggestions as to how to improve the events, had their discharges delayed for varying reasons. Delay end of life can be managed effectively with usually low relating mainly to timing and organising the groups in appropriate care package being available was an doses of sedatives with help of the LCP. Higher doses of according to type of bereavement ( this suggestion issue, other reasons being complexities within the sedatives were required on the specialist palliative care sessions came independently from 3 bereaved spouses aged 41- family situation and changing needs of patients. Delays unit possibly reflecting the complexity of patients 55). have a huge impact on patients and their families in managed there.

(Friday) Overall the bereavement evenings were valued by what is already a stressful time, and may mean they are respondents who participated, and even those who did not able to be cared for in their place of choice.

Poster not attend appreciated having been invited, seeing it as PE 1.F44 further evidence of the care extended to them by the hospice. PE 1.F42 Audit of the prescription of strong opioids at the point of referral to specialist palliative care Standards for social worker in palliative care in PE 1.F40 Sweden McNeil L E1, Isherwood R2, Mitchell A2 1The Ayrshire Hospice, Palliative Medicine, Ayr, United How is end-of-life care performed in a Benkel I1, Hultkvist S2, Karlsson K3, Mannefred C4, Mähler Kingdom, 2Beatson West of Scotland Cancer Centre, Norwegian teaching hospital? S5, Orsholm I6 Palliative Medicine, Glasgow, United Kingdom 1Sahlgrenska University Hospital, Department of Haugen D F1, Søvik E M2, Sigurdardottir K R3 Geriatric Medicine, Gothenburg, Sweden, 2Stockholms Aim: A review of the prescription of strong opioids at 1Haukeland University Hospital, Regional Centre of Sjukhem, Stockholm, Sweden, 3Sahlgrenska University the point of referral to specialist palliative care (SPC). Excellence for Palliative Care, Western Norway, Bergen, Hospital, Oncology Department, Gothenburg, Sweden, Method: Data was collected on consecutive patients Norway, 2University of Bergen, Faculty of Medicine, 4Palliative Team, Borås, Sweden, 5Palliative Team, Solna, already prescribed strong opioids at the time of referral Bergen, Norway, 3Haraldsplass Deaconal Hospital, Sweden, 6Psycho Social Office, Karolinska University to hospital SPC teams. Anonymised data about the Sunniva Clinic for Palliative Medicine, Bergen, Norway Hospital, Stockholm, Sweden prescription of opioids, use of adjuvant analgesia and possible opioid side-effects was collected and analysed Aim: Our hospital is a large teaching hospital with 950 Background: The Association for social worker in descriptively. deaths per year. We wanted to study how end-of-life palliative care in Sweden was founded in 2003 and Results: Data was collected on 89 patients, aged 27 - 95 care was provided at the hospital before introducing a currently approximately around 50 members. The aim years (mean 67 years). The most frequent diagnoses palliative care consult service, and identify areas for was to create standards for social workers in palliative were lung, colorectal and prostate cancer. For those improvement. health care, in order to define what the social worker patients who had a pain score recorded the mean score Material: All palliative care cancer patients (pts) who shall do, as well as the need of competence and was 5 out of 10. The majority (96%) of patients were died at the Departments of Surgery and Oncology Jan- education. prescribed strong opioids for management of pain. 64% June 2006, 78 in all (34 females, 44 males). Aim: To create standards for social worker in palliative were also prescribed adjuvant analgesia. 52% of Method: Retrospective study of all parts of the medical care. analgesics had been titrated according to the WHO

62 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) ladder and only 46% of opioids had been correctly C15-PAL questionnaire database was developed. The implementation at the titrated according to breakthrough analgesia given. 95% • Other important symptoms / problems palliative care unit, evaluation of its practicability and of patients had breakthrough analgesia prescribed but • Duration of the home visit and transportation to the acceptance of the medical staff was the main aim of the only 78% of these were at the right dose. The majority patient’s home project. of doses that were prescribed incorrectly were too high. • Change in medication After six months the implementation of the 70% of patients were prescribed aperients and 66% of • Prescription of new medicine documentation system was successful regarding patients were prescribed anti-emetics. • Phone contact to pharmacy, general practitioner, practicability and acceptance of the medical staff. The Conclusion: Around two thirds of cancer patients will home care nurse, hospital analysis of the first data will be presented. require strong opioids to alleviate pain. Of these • Involvement from other professionals from the team We were able to develop a practicable electronic patients approximately 88% can have their pain or other database for palliative care units. The analysis of the adequately controlled if the basic principles outlined in • Hospital admission, referral to hospice or other data will show, if they reflect the specific requirements the WHO guidelines are followed. services of palliative care. This documentation system could be The majority of patients with cancer-related pain are • Volunteer involvement used for the comparison of the different structures of seen by generalists who manage their pain and other • Follow up time, place of death. palliative care units and could be the basis for further related symptoms. Results: research projects. The extension to other institutions is The prescription of strong opioids should be a generic - 97 patients have been registered. planned. skill for all doctors however this review showed there is - 71 (73%) had filled in the EORTC questionnaire. still improvement to be made. Specialist palliative care - More than half of the patients scored maximum for teams have a role in providing education and the difficulties walking short distances, has to stay in bed or PE 1.F49 chance to influence the medical curriculum, both chair during day time, feel tired, the symptom burden undergraduate and postgraduate, to ensure that was generally high. An assessment of the implementation of everyone has the skills needed to provide patients with The study is ongoing and detailed data from appr 150 palliative care standards in South African adequate analgesia. patients will be presented at the congress. hospices

DeFilippi K1, Cameron S1 PE 1.F45 PE 1.F47 1Hospice Palliative Care Association of South Africa, Patient Care, Cape Town, South Africa Audit of diagnosis and management of anaemia Changes in anti-cholinergic load from regular in patients referred to a hospital support team prescribed medications in palliative care as Aim: The Hospice Palliative Care Association (HPCA) for palliative care death approaches and the Council for Health Services Accreditation of Southern Africa (Cohsasa), developed comprehensive Noble B1, Hirst B1 Agar M1, Currow D C1, Plummer J2, Seidel R1, Carnahan R palliative care standards to promote quality in 1Sheffield University, Academic Unit of Supportive M3, Abernethy A P4 organizational management and care delivery in Care, Sheffield, United Kingdom 1Flinders University, Palliative & Supportive Services, member hospices. Levels of compliance are assessed Adelaide, Australia, 2Flinders Medical Centre, during surveys, with 80% in each relevant service Background: Anaemia is common in palliative care Anaesthesia and Pain Management, Adelaide, Australia, element required for full accreditation. HPCA recently patients and the cause may be multi-factorial. The main 3University of Oklahoma, Pharmacy, Oklahoma, United assessed the value of the process when measured challenge is distinguishing between anaemia of chronic States, 4Duke University Medical Center, Medicine, against the time and resources required at both disease (ACD) and iron deficiency anaemia (IDA). North Carolina, United States national and local hospice levels. Ferritin is the most useful discriminator with values of Method: A review was conducted of the standards, <40μg/L in the absence of inflammation or <70μg/L Introduction: Although there is an understandable surveys and linked mentorship process. Meetings were with inflammation being highly predictive of IDA. emphasis on the side effects of individual medications, held with 20 fully accredited member hospices to assess Aim: Review the literature and develop criteria and the cumulative effects of medications have received perceptions of the benefits and challenges and to standards against which to audit current practice. little attention in palliative care prescribing. Anti- identify areas for improvement. An analysis of all survey Method: 100 consecutive patients referred to a hospital cholinergic load reflects a cumulative effect of results was also conducted to assess the progress of support team for palliative care. Anaemia was defined medications that may account for several symptoms member hospices towards compliance with the as a haemoglobin below laboratory’s normal limits. and adverse health outcomes frequently encountered standards and to identify areas requiring additional MCV was noted as was details of any further in palliative care. mentorship and training. Standards alone are of limited haematological investigations and management of Methods: A secondary analysis of 304 participants in a value in ensuring quality in palliative care and surveys those with anaemia. randomised controlled trial had their cholinergic load and mentorship are integral to their implementation. Results: Forty-two patients were defined as anaemic. calculated using the Clinician Rated Anti-cholinergic Results: Key benefits included the provision of norms 21% had further investigations. 35 of the 42 had a Scale (modified version) longitudinally as death for quality care and management, enhanced credibility, normocytic anaemia and 6 of these were receiving iron. approached from medication data collected access to donor funding, staff and organizational Five patients had a microcytic anaemia. Two of these prospectively by study nurses on each visit. Mean time development and the promotion of quality had a ferritin measured and were on iron in spite of from referral to death was 107 days, and mean 4.8 visits improvement. The need for a detailed introduction and ferritin values indicating ACD was more likely than were conducted in which data were collected. suggested language changes are being addressed. An IDA. Three months later, only one of the 42 anaemic Relationships to key factors were explored. analysis of individual hospice survey scores indicated patients was still alive. Results: Data demonstrated that anti-cholinergic load and overall improvement in management and care and Conclusions: Anaemia is common in this group of rose as death approached because of increasing use of a commitment to quality improvement. patients, is usually mild and is often not appropriately medications for symptom control. Symptoms Conclusion: Evidence of compliance with recognized investigated or treated. Symptoms such as fatigue and significantly associated with increasing anti-cholinergic standards is positioning South African hospices as breathlessness may be due to underlying pathology not load included dry mouth and difficulty concentrating palliative care resources, making a significant anaemia. Iron is not a risk free treatment and causes (p < 0.05). There were also significant associations with contribution to HPCA’s vision of Palliative Care for All. significant side effects. Management of this group of increasing anti-cholinergic load and decreasing patients requires pragmatism and careful analysis of functional status (Australian Modified Karnofsky benefits and burdens. Performance Scale; and quality of life (p < 0.05). PE 1.F50 Discussion: This study has documented in detail the longitudinal anti-cholinergic load associated with Development of a statewide database for quality PE 1.F46 medications used in a palliative care population monitoring and improvement in palliative care between referral and death, demonstrating the biggest sessions First home visit to patients referred to a specialist contributor to anti-cholinergic load in a palliative care Abernethy A P1, Bull J2, Wheeler J L1, Gblokpor A1, Marcello palliative care team. Patient characteristics and population is from symptom specific medications, J3, Zafar S Y1 (Friday) symptoms, team interventions and use of which increased as death approached. 1Duke University Medical Center, Medicine/Oncology, 2 resources Durham, United States, Four Seasons Hospice & Poster Palliative Care, Palliative Care, Flat Rock NC, United Vejlgaard T1, Buus I1, Hansen G M1 PE 1.F48 States, 3Duke University Medical Center, Biostatistics, 1Hospital of Vejle, Palliativt Team Vejle, Vejle, Denmark Durham, United States Development of a computer-based Background: It is commonly accepted that 20-30 % of documentation system for palliative care units Aims: To create a regional palliative care database that palliative cancer patients need specialist palliative care (1) supports quality assessment and monitoring, intervention. This study was performed to describe the Grebe C1, Rainer F2, Strohscheer I3 (2) enables longitudinal tracking of outcomes, patient referred to a specialist palliative care team with 1Paracelsus Medical University Salzburg/Hospital (3) is practical in diverse settings, strict criterias for referral. Vöcklabruck, Vöcklabruck, Austria, 2Hospital (4) meets reporting requirements, Referral criterias to team include: Palliative patient with Vöcklabruck, Vöcklabruck, Austria, 3Medical University (5) captures consensual data elements for responding to complex symptoms / problems with needs that exceed Graz, Graz, Austria future metrics. the common efforts of the professionals involved at Methods: A community-based hospice/palliative care basic level of palliative care (GP, home care service, In German-speaking areas there is a lack of organization and an academic medical center are hospital staff etc.). standardized documentation systems for palliative care developing a database infrastructure for clinical After receiving a referral we require the patent’s units for the routinely use in daily practice. The aim of palliative care, quality monitoring, and research. In complete hospital file and often call the refering doctor our project was to develop a computer-based structured stakeholder meetings, we agreed on a modular to clarify the needs of the patient before we arrange our documentation system which is able to collect approach (core data elements plus scenario-specific first home visit which is always performed by a doctor longitudinal data on palliative care units. customized data elements), developed a data dictionary, and a nurse, usually the home care nurse takes part as After literature research and first own experiences, we and created and field-tested data collection forms. After well. The aim of this first visit is to create an overview of identified relevant medical and structural (e.g. duration exploring different systems, we selected a relational the patient’s situation and needs and to make a plan for of stay, frequency of admission) characteristics. database as the most practical and facile solution. The the treatment, help and support needed. Symptom assessment as well as medical, limited architecture serves clinicians’ needs, meets security Method: For each patient was registered: nursing and psychosocial procedures were also defined requirements, and accepts data through a variety of • Age, sex, cancer diagnosis as important issues. The items are partly based on data collection platforms including tablet computers • Results of symptom screening using EORTC QLQ- published data. For the data sampling an electronic and digital pens. We developed software, secure data

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 63 Poster sessions (Friday)

transfer procedures, and data control procedures. Data admission. Male to female ratio was 4:5. 47% of these levels of joint working within a large cancer network in travel from the community site to the academic site for admissions presented out of working hours. the U.K. analysis and reporting; iterative feedback informs Observation parameters were monitored satisfactorily. Methods: A survey was sent out to all service leads of system refinement and directs analytic inquiries. 81% received analgesia within 30 minutes of arriving in specialist palliative care services within Merseyside and Results: In 3 months, data on 252 patients were hospital. There was no consistent pattern of opioid use Cheshire Cancer network. Questions included type of collected by 6 nurse practitioners and a medical with different route of administration applied. Also pain service available, number of referrals, barriers to champion at the community site, who entered data at ‘adjuvant’ medication like laxatives, anti-emetics were access of pain service and issues around specific point of care. The system generated preliminary data not routinely prescribed. The Palliative Care Team was education. tables reporting symptom frequencies and severity over involved in 67% of the admissions. Results: 90% of the palliative care services had some time. Data have been mapped to recently developed Conclusion: Management of sickle pain is broadly in form of access to pain management. A number of palliative/hospice care quality metrics. line with the British Committee for Standards in services only had informal access to pain management. Conclusions: Creation and use of a palliative care Haematology guidance. A recent NCEPOD (National Only one service had formally established joint database is feasible at a community site without pre- Confidential Enquiry into Patient Outcome and Death) assessment and management of patients with the existing electronic data capture. Important lessons report highlighted problems with adverse effects of respective pain service established. 2/3 of palliative care learned include: stakeholders’ needs must be addressed; opioids, however our patients are closely monitored services had referred less than five patients over the last the system must be flexible and easily used by diverse and there is ample evidence of good nursing practices. year. Education around interventional pain institutions/users; the system must be scalable and We have developed hospital guidelines to try and management was scanty and only two units had written expandable; a palliative care database could inform standardize the treatment of pain in patients with sickle policies regarding management of patients undergoing statewide service planning. cell crisis and also designed an assessment tool to pain interventions. monitor pain scores and adverse effects. Conclusion: Availability of interventional pain management remains patchy and should be improved PE 1.F51 to guarantee appropriate assessment and access to PE 1.F53 procedures for all cancer pain patients who require it. Level of satisfaction of caregivers attended by a Guidelines and protocols need to be developed around support palliative care team in a teaching Hospice friendly hospitals - Developing an audit formal, joint working and appropriate education for hospital and evaluation strategy for a national staff. programme Canal J1, Palomar C2, Jimenez A2, Barallat E1, Juvero T2, Nabal M2 Clark D1, McKeown K2, Keegan O2 PE 1.F55 1Hospital Santa Maria, Palliative Care Supportive Team, 1Lancaster University, School of Health and Medicine, Lleida, Spain, 2Hospital Universitarios Arnau de Lancaster, United Kingdom, 2Irish Hospice Foundation, Audit of management of malignant spinal cord Vilanova, Palliative Care Supportive Team, Lleida, Spain Dublin, Ireland compression in an Irish regional hospital

Objective: To know the degree of satisfaction of Background: The Hospice Friendly Hospitals (HFH) Hayes D M1, Fleming J2 caregivers attended by a support palliative care team. programme in Ireland is designed to change hospital 1Marymount Hospice, Palliative Medicine, Cork, Method: Prospective and descriptive post survey. cultures of care and organisation relating to death, Ireland, 2Waterford Regional Hospital, Palliative Population: all the patient relatives seen by our team dying and bereavement, using a ‘systems level’ Medicicne, Waterford, Ireland between January and December 2007, excluding those approach. A national intervention on this scale poses not been discharged from our service and/or those with significant evaluation challenges. Introduction: Malignant Spinal Cord Compression no next of kind. Mailing post was done on September Aims: To conduct baseline (2008/9) and follow-up (MSCC) occurs in up to 5% of patients who die from 2008. The inquiry had two differentiated parts; the first (2011/12) comparisons to assess the extent to which cancer. The most important factor determining included data regarding the relative who answered. In intermediate outcomes (improved standards in the prognosis is the degree of neurological function at the the second part included 11 closed questions related to organisation and culture of end of life care) and final beginning of therapy. the patient’s symptom control, emotional support and outcomes (improved end-of-life experiences for patients Aims: To assess compliance with hospital based the degree of help received. The inquiry offered the and families) have been achieved. guidelines regarding management of MSCC. possibility of comments and suggestions. Descriptive Methods: Five categories of data inform the Methods: Patients with MSCC were identified by statistics were used to summarize respondents’ assessment of HFH effectiveness in achieving its goals: consulting with oncology teams and the radiology characteristics. 1) Context department. The following information was Results: A total of 379 were sent. At 30 days 99 (31.7%) 2) Caring climate documented. answers were received with the following 3) Standards 1. Patient diagnosis characteristics: 77,7% were women with a mean of age 4) Patient outcomes 2. Symptoms and signs of 58,3 years (range 29-83). Relationship to patient: 5) Programme inputs. 3. Duration of symptoms spouse 43,9% and child 44,9%. Scholarship: 51,1% Statistical analysis using Multi-Level Modelling will be 4. Steroid dose pre-MRI primary school and 31.8% secondary school. 86,7% of used to separate individual-level and hospital-level 5. Waiting time for MRI respondents agreed the patient had a good pain influences, both at baseline and follow up. 6.Was wholespine MRI completed? control. 80% of the caregivers consider that patients Results: We report on the findings of a pilot study in 7.Time to radiotherapy quality of life, death, information and relation with the nine hospitals, from which the following key lessons 8.Outcome. team was satisfactory. The 67.3% of relatives had the emerged: 10 patients (March 07-August 07) were identified with feeling that they were grieving in an adequate manner. 1) Each hospital to identify a designated manager to MSCC. The results were audited and our practice was 38.8% said that they have not received enough help to oversee the evaluation compared to previously identified standards. solve hanging topics. The mean of satisfaction 2) An electronic database and instruction document Implementation of change was undertaken in perceived was 7.7/10 (median: 9; range (0-10). required for tracking the 6 questionnaires that make up September 07. Audit cycle was completed Sept 07-Feb Conclusions: the evaluation 08 to determine if practice had changed. 1. The level of satisfaction perceived by responders is 3) A briefing session needed in each hospital for ward Results: 4 standards were identified against which our globally high. managers and those contacting bereaved relatives. practice was measured. March-Sept 07. 2. The degree of satisfaction related to symptom 4) All materials to be assigned a ‘Plain English Mark’. 1) 50% pts received steroids pre-MRI. control, quality of life, information, relation with the Conclusions: The evaluation of HFH has created 2) 100% pts had MRI. team and death is also high. conceptual and practical challenges. Key to success is 3) 80% pts had wholespine MRI.4)10% pts received 3. It seems that the attention related to solve hanging the extent to which participating hospitals can Radiotherapy (DXR) within 24hrs. sessions topics did not respond to the expectations in a small integrate the demands of the evaluation into routine Post implementation of change Sept 07-Feb 08. group of relatives and can be improved. audit activities, thereby minimising burden and 1) 50%pts receive steroids pre-MRI.

(Friday) increasing compliance. 2) 100% pts had MRI. 3) 100% had wholespine MRI 4)60% pts received DXR

Poster PE 1.F52 within 24hrs. PE 1.F54 4 standards were identified against which our practice Retrospective audit of acute sickle painful crisis was measured. 2 standards were achieved. 100% of pts Access to interventional pain management- have MRI scanning and 100% of pts have wholespine Cachia E1, Sorour Y2, Saunby D1, Ahmedzai S H1, Wright J2 available to all who need it? MRI. Steroid treatment pre-MRI remains below standard 1Sheffield Teaching Hospitals NHS Trust, Palliative at 50%. The % of pts receiving DXR improved in part 2 Medicine, Sheffield, United Kingdom, 2Sheffield Bellieu J1, McKenna E2, Jones A3, Sharma M L4, Hugel H1 of the cycle. Teaching Hospitals NHS Trust, Haematology 1University Hospital Aintree, Aintree Specialist Palliative Conclusions: Our results remain below standard. To Department, Sheffield, United Kingdom Care Services, Liverpool, United Kingdom, 2Marie Curie consistently achieve all standards, the education of Palliative Care Institute Liverpool, Liverpool, United junior doctors and nursing staff needs to continue. The Background: Painful crisis is commonest cause for Kingdom, 3Royal Liverpool University Hospital, audit highlighted that surgical doctors and GPs also admission to hospital but remains a point of friction Anaesthetic Department, Liverpool, United Kingdom, need to be educated on the management of MSCC. The between medical staff and patients. Inadequate control 4The Walton Centre for Neurology and Neurosurgery, NICE guidelines will be published in Nov 2008.The may lead to chronic pain syndrome. Management of Chronic Pain Service, Liverpool, United Kingdom hospital guidelines will be re-evaluated at this stage. pain primarily involves opioids and adjuvants. Aim: To determine: Background: Approximately 10% of cancer pain 1) the number of patients with sickle cell crisis patients are said to require interventional pain admitted to hospital in one year; management techniques. National guidance has stated 2) the length of stay and the number of readmissions; that local specialist palliative care teams should have 3) analgesia used; access to an anaesthetist with expertise in nerve blocks 4) adverse effects; and neuromodulation techniques, and that each cancer 5) observation parameters, network should have a named lead specialist for 6) involvement of the Palliative Care Team, and advanced pain techniques. The literature also 7) compliance to national guidelines. recommends a joint approach in assessment of these Results: There were a total of 21 admissions (9 patients between pain and palliative care specialists. patients) with acute pain. 5 patients had only one Aim: To assess the availability, referral practice and

64 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday)

PE 1.F56 documentation around the indications for rotation are care were followed. In physical symptoms, consultation often suboptimal. Dose conversion ratios are often not for swelling increased to 78.4% in period IV from 42.4% Audit of medical management of inoperable documented, symptoms of opioid toxicity are often in period I. The CN assessed their swelling and bowel obstruction in a specialist palliative care unclear and patient renal function may not be performed relaxation, lymphedema management,and unit recorded. In the event of patients requiring a further supports in staff nurses practice. rotation, lack of documentation may hamper decision Conclusions: The present results suggested that the Hayes D M1, Wallace E M1, Cronin M C1, O Brien T1 making. Individual prescribers often use differing role of CN has been well recognized by patients and 1Marymount Hospice, Palliative Medicine, Cork, conversion ratios depending on their previous family as well as medical staff, and they became to use Ireland experience, all of which combine to make the area of the CN for palliative care properly. opioid rotation confusing. Staff education and Introduction: Malignant Bowel Obstruction is a documentation regarding opioid rotation are essential common complication in patients with advanced to improve patient outcomes. PE 1.F61 abdominal or pelvic malignancy such as colonic, ovarian or gastric cancer. The frequency of Bowel The experience of seven years of domiciliary Obstruction in patients with advanced ovarian cancer PE 1.F59 palliative care from 2000 to 2007 ranges from 5% to 42% and in patients with advanced colorectal cancer from 4% to 24%. Does the doctor listen to the consultant Dalia G1 Aims: To audit the medical management of patients palliative care team? An assessment 1Italian National Service AUSL 6 Palermo, Socio with malignant bowel obstruction (MBO)admitted to a Sanitary Integratio: Unit of Palliative Care, Palermo, specialist palliative care unit over a six month period, Escher M1, Besson M1, Desmeules J1, Piguet V1 Italy July 08- Dec 08. The standards against which our 1Geneva University Hospitals, Geneva, Switzerland current practice will be audited against are based on In Italy the Domiciliary Palliative Care is included in recommendations by an EAPC expert steering group , Background: The Pain and Palliative Care team (PPCt) the Essential Levels of Assistance (L.E.A.) and free 2001. work as consultants in an acute care hospital. After insured by the National Sanitary System (S.S.N.). In the Methods: Data collected from charts of patients with assessing a patient we give advice to the doctor in territory of the USL 6 the predictable use for the MBO managed in the unit and information charted as charge, who is free to implement the proposed Domiciliary Palliative is at least 1.500 new cases per follows: treatment or not. Our aim was to determine if and how year. Palliative Care can be activated by an application 1. underlying malignancy our propositions were followed, and what was the of the Family Physician (M.M.G.) or by an Hospital 2. symptoms of bowel obstruction outcome for the patients. indication (Programmed Dimission). Multi 3. signs of bowel obstruction Methods: Prospective observational study. From Dimensional valutation takeplace at home or in 4. radiological evidence February 2008 we included 100 consecutive patients hospital by the Palliative Valutation Unit (UVP) that fill 5. Antiemetics- starting dose- range of doses referred to the PPCt for uncontrolled pain. The reason a personalzed Assistance Plan based on the needs of the 6. Antisecretory agents-starting dose-range of doses why the treatment was not implemented was asked patient and its familY.Purpose of the study: to observe 7. Analgesics- starting dose-range of doses either to the doctor or to the nurse in charge. the assistance evolution during the years to draw 8. Steroids Propositions followed only in part were recorded. indications about budgeting and audit assistance’s 9. Laxatives Results: The PPCt’s propositions were implemented for quality. Revision of all the palliative domiciliary care 10. NG tube 72 patients (PI group), partially for 16 (PpI group), and from 2000 to 2007 is made (MA=midle access): 11. Duration of management not implemented for 12 (PnI group). Most New ass.: 268-476-654-768-822-700-923 12. Outcome. consultations took place in the medical or the surgical In load/potential: 17,9%-31,7%-43,6%-51,2%-54,8%- Results: The audit is ongoing. There are 15 cases to wards. The PPCt’s advice was equally followed in both 46,7%-61,5% date of MBO since July 08. divisions. The patients’ mean VAS scores were 78 mm (± Midle days: 36,6-38,2-45,7-41,7-426-44,4-45,3 1) 15/15 patients had a combination of analgesics, 22) on the first consultation and 47 mm (± 31) at 48 MA Physician: 10,1-10,1-11,2-10,7-10,1-9,1-9,8 antiemetics and antisecretory agents hours (p<0.0001). Pain was controlled in half the MA Nurse: 11,9-11,0-13,3-12,9-12,1-12,0-12,5 2) 4/15 patients had nasogastric tubes as temporary patients within 48 hours. Compared to the PnI and PpI MA Ftk: 3,7-2,6 -3,0 -2,9 -2,9-2,1-2,2 measures groups more patients in the PI group had their pain MA Soc.Ass.:1,9-1,3-1,2-1,3-1,4-1,6-1,5 3) 0/15 had total parenteral nutrition relieved (63% vs 20%; p=0.0002). Mean pain intensity M A Psychologist: 1,2-1,0-1,1-1,0-1,1-1,0-1,2 4) 4/15 had parenteral hydration. did not differ between the PI group and the other MA CIA: 0,78-0,68-0,65-0,69-0,65-0,58-0,60 ybr

Opioid rotation practices in a specialist palliative care unit PE 1.F60 PE 1.F62

Hannon B L1, O’Brien T1, Murphy M1 Changes in the consultation activities in the Implementation of the Liverpool Care Pathway 1Marymount Hospice, Department of Palliative certified nurse for palliative care in Shimane (LCP) in a teaching hospital in Switzerland: A Medicine, Cork, Ireland University Hospital story of success sessions Aim: It is well known that patients who develop Hatto R1, Saito Y1, Nakatani T1, Inagaki T1 Eychmueller S1, Grossenbacher-Gschwend B1 intolerable adverse effects while achieving suboptimal 1Shimane University Hospital, Palliative Care Center, 1Cantonal Hospital St. Gallen, Centre for Palliative Care, (Friday) analgesia may benefit from opioid rotation or Izumo, Japan St.Gallen, Switzerland

switching. Indications for opioid rotation include: Poster 1. poor response to initial opioid (inadequate analgesia) Aim: The certified nurse (CN) for palliative care Rational: Decision making at the end of life and the 2. intolerable adverse effects directly respond to consultations from medical staff care during the dying phase are often characterized by 3. poor compliance and residents of the community beside working as a major communication problems and “fights” between 4. renal impairment member of the palliative care team in our hospital. The the medical and nursing staff leading to distress in 5. patient request purpose of this study is to assess the activity of CN in patients and families. The LCP has demonstrated to be 6. need for alternative route of administration. consultation work with using the retrospective analysis an effective tool this situation. LCP was translated into Our aim is to audit opioid rotation practices in a of those consultations. german and implemented as part of a quality project specialist palliative care unit, intervene with Methods: We investigated the characteristics of the within the hospital´s accreditation process. educational sessions around the rationale for and consultations, such as background of clients, consulted Method: The 10 step approach as provided by documentation of opioid rotation, and review our subjects and care taken by the CN, in the last 3 years. Liverpool thas been followed and “multiplicators” have practices within 3 months. Those data were compared among the four periods been appointed each in nursing and medical staff in all Methods: Retrospectively review 100 inpatient charts ;I(2005.9.-2006.3.),II(2006.4.-2007.3.),III(2007.4.- departments. Extensive education and on-site to look at baseline patient demographics as well as 2008.3.), IV (2008.4.-2008.9.). counselling was offered through a interprofessional 1. baseline opioid (opioid on admission) Results: The number of consultation and consulted project team providing 24-hours on call service. 2. indications for rotation subject were symptom management and mental care, Outcomes were evaluated according to the pathway’s 3. choice of opioid mouth care and skin care, family care in periods I, II, goals, and international benchmarking with the UK- 4. dose conversion ratio III, and IV, respectively. The ratio of consultation from audit on LCP in the hospitals was performed. 5. documented response to rotation. doctors increased to 50% in period IV from 13% in Results: After an initial pilot phase in 6 different units This will be repeated for each opioid rotation per period I. The ratio of consultation from patients and and 18 months of clinical implementation in all patient as some patients may rotate through a number family increased to 16% in period IV from 24% in departments and hospitals (1024 beds) the LCP of opioids during the course of their inpatient stay. period I. The ratio of consultation from another evaluation as part of the hospital audit showed best Results: This audit remains a work in progress so hospitals also increased to 14% in period IV from 3% in dissemination throughout the hospital and got best complete results are currently unavailable. period I. The popular subjects consulted were rating (D) in regard of the accreditation procedure. Conclusion: Although opioid rotation is a common management of physical symptoms, and management Around 27% of all dying patients entered the pathway intervention in specialist palliative care units, our of psychological symptoms, skin/oral care, and family (n= 159 out of 529 deaths, UK benchmark max. 30%).

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 65 Poster sessions (Friday)

Highest performance was achieved in prescribing PRN therapy (AD), age,TNM-class., PSA at the time of PE 1.F66 medication for distressing symptoms (pain, delirium, diagnosis (iPSA)). dyspnoea, nausea, in 92%, 86%, 90%, 88% resp., all Results: 86 pts. were divided in two groups: Group I Can patient characteristics predict serum higher rates than in UK), and major improvement (n=47) comprised pts. with < 5 BM: mean age 66.5 ys., concentrations and the ratio between compared to the pre- LCP period could be stated for PSA 35.5 ng/ml, PSA(CPC) 13.2 ng/ml, time between oxycodone, noroxycodone and oxymorphone? A discontinuing unnecessary medication and change to initial treatment and CPC 33.5 mos., 36% received AD. multicentre cross-sectional study the subcutaneous or IV application (90%, 95% resp.). Group II (n=39) comprised pts. with > 5 BM: mean age Conclusions: LCP can be implemented effectively 66.8 ys., iPSA 45.4 ng/ml, PSA(CPC) 28.5 ng/ml, time Andreassen T1, Klepstad P2, Bjordal K3, Lundström S4, Davis even in a big teaching hospital in Switzerland, and between initial treatment/CPC 67 mos., 69% received A N5, Kaasa S2, Dale O2 international benchmarking to the results of the UK AD. TNM-status was similar in both groups. The 1Pain and Palliation Research Group, Norwegain hospital audit on LCP may be unique in the hospital osteoblastic BM of pts. not receiving AD had a University of Science and Technology, Trondheim, quality development process. SUVmean of 3.68 and SUVmax of 3.81. In contrast, pts. Norway, 2Pain and Palliation Research Group, St.Olav’s who underwent AD showed a SUVmean of 4.04 and University Hospital, Trondheim, Norway, 3The SUVmax of 4.49. No correlation between BM-volume Norwegian Radium Hospital, Oslo, Norway, PE 1.F63 and 11C-choline uptake was found. In 55%(47/86) 4Stockholms Sjukhem, Stockholm, Sweden, 5The Royal additional information about tumor progression Marsden Hospital, Sutton, United Kingdom Health care use and expenses at the end of life: (LR,Lnn.) was provided by CPC. The number and kind Do we care? of detected BM in CPC was higher compared to BS resp. Oxycodone (OX) is a frequently prescribed opioid in F-18-PET. palliative care in Europe. However, OX is far less studied Gielen B1, Remacle A1, Mertens R1 Conclusions: These preliminary data indicate that in than morphine. Studies of patients on OX and its major 1Landsbond Christelijke Mutualiteiten (Christian pts. with prostate-cancer 11C-Choline-PET/CT is on metabolites are few and the series are small. As a part of Sickness Funds), Brussel, Belgium significance compared to BS and F-18 PET. Additionally the European Pharmacogenetic study (EPOS) we aimed this method detects neither bone mets nor local to study the relationship between clinical characteristics Aim: It is well known that the cost of health care recurrence and/or lymph node involvement. and serum concentrations of OX and its metabolites generally peaks at the end of life. We aimed to after oral administration in cancer patients. Of 2300 investigate care trajectories, health care use, and related patients included in EPOS, 421 (237 men and 184 community expenditure during the last six months PE 1.F65 women) were using oral OX. Clinical and laboratory before death. data and blood-samples for DNA and opioid serum Methods: The study population contained 40965 [11C]-choline PET/CT imaging for Restaging of concentration analysis were collected. OX, persons (age > 40), who died within one year (July prostate cancer patients with biochemical noroxycodone (NOROX), oxymorphone (OXYM) and 2005-July 2006). In Belgium, sickness funds are in relapse after low-dose rate brachytherapy noroxymorphone (NOROXYM) were analysed by mass charge of the management of the compulsory health spectrometry. Patient characteristics (median (min- insurance. Therefore, health care use was inferred from Ghadjar P1, Messer P M2, Schmidt I3, Reske S N3, Gottfried max)): Age 63.2 (18.9-91.2) yrs, BMI (body mass index) reimbursement claims, including information on H W4, Aebersold D1, Blumstein N M5 23.5 (14.3-41.2), Karnofsky status 70 (20-90)%, time diagnostic and therapeutic procedures, institutional 1Inselspital, University Hospital Bern, Radiooncology, since cancer diagnosis 19.5 (0.2-291) months. OX dose and home care, and reimbursed drugs. Specific Bern, Switzerland, 2University Hospital Ulm, was 60 (10-1600) mg 24 h-1. Serum conc. (nM) was OX hypotheses were tested using logistic and nominal Radiooncology, Ulm, Germany, 3University Hospital 97 (0-1890), NOROX 101 (0-4865), OXYM 1.4 (0-27), regressions, and analysis of variance. Ulm, Nuclear Medicine, Ulm, Germany, 4Public NOROXYM 16.4 (0-509). Ratios were NOROX/OX 1.1 Results: The most common pathway (19.5%) was Hospital Göttingen, Urology, Göttingen, Germany, (0.1-24) and OXYM/OX: 0.02 (0.01-5).The effect of where people were staying at home but were dying in 5Inselspital, University Hospital Bern, Nuclear Medicine patient variables (gender, age, BMI, time since the hospital. 42.1% of the persons who died in the and Radiooncology, Bern, Switzerland diagnosis, Karnofsky, number of medications other hospital (49.6% of the population) were transferred than opioids taken last 24 h daily dose, creatinine and during the last week before death. Aim: Impact of [11C]choline positron-emission albumin concentrations on serum conc. and ratios was From the total population, 18.5% could be identified as tomography (PET)/computed tomography (CT) explored by backward stepwise linear regression. Totally having received palliative care (palliative population). imaging for Restaging in prostate cancer (PCA) patients daily dose was associated with serum conc. of all The health care use and expenditure differed between with biochemical relapse after low-dose rate compounds and both ratios. Gender was associated the palliative and non-palliative population. The brachytherapy (LDR-B). with NOROX/OX ratio. BMI and albumin was probability of getting palliative care was mainly Methods: 169 patients with localized prostate cancer associated with OX conc. and NOROX/OX ratio, while dependent on a combination of age and cancer (being a and low-risk of relapse were treated by LDR- age and creatinine was associated with NOROX/OX cancer patient or not). The total community Brachytherapy with 125J-seeds. Biochemical relapse was ratio only. Number of medications taken last 24 h was expenditure per person was highly dependent on age, defined according to the ASTRO criteria. All patients associated with ratio of OXYM/OX. As expected daily presence of cancer, and place of death. 53.3% of the with relapse underwent transrectal ultrasound (TRUS), dose was the most prominent predictor of OX and palliative population died at home, where the digital rectal examination and [11C]choline PET/CT metabolite cons. and ratios. BMI and albumin affected community expenses (median) per day are ten times imaging. None of the patients was under hormonal OX cons. Note that all association factors (except smaller as compared to the palliative service in a therapy when PET/CT was performed. In patients with number of other medications) affected NOROX/OX hospital. However, it has been shown that the personal potentially curative intent to treat the suspected area in ratio, which is heavily dependent on CYP3A4 activity. cost of care for the patient and their family is much PET/CT imaging was biopsied. higher at home. Additionally, other factors determine Results: Nineteen patients experienced biochemical whether one can stay and die at home or not. In this relapse with a prostate-specific antigen (PSA) after LDR- PE 1.F67 regard, reference will be made to a qualitative study by B during a folow-up period of 48.5 months. Eighteen means of 10 focus groups. patients had a positive PET/CT showing local Effects of opioids on cellular immunity: Conclusion: To conclude, recommendations for recurrence (11), local recurrence and regional lymph Importance for supportive and palliative care policymakers will be distilled from this research. node metastasis (3), local recurrence and bone (No external funding) metastasis (1) or no local recurrence but regional Boland J1, Ahmedzai S H1 lymph node metastasis, bone metastsis or pulmonary 1University of Sheffield, Academic Unit of Supportive metastasis (3). Only in one patient a focal Care, Sheffield, United Kingdom PE 1.F64 inflammation was seen. All patients with solitary local recurrence underwent prostate biopsy which affirmed Opioids are often the mainstay of analgesic therapy for Early detection of bone metastasis by 11C- the diagnosis of reccurent PCA in all cases. The PET/CT severe pain. They are also commonly used as part of sessions Choline-PET/CT: A feasibility study in patients findings had a potential impact on the appropriate drug rehabilitation programmes. Some patients on with prostate cancer individualized therapy with a proportion of patients these medications for either of these indications may

(Friday) receiving salvage radical prostatectomy (2/19), external have cancer or infection, including HIV. Graeter R1, Lang C2, Ghadjar P3, Reske S N4, Gottfried H beam radiation therapy (2/19), chemotherapy (1/19), The immune system is critical in the control of both 5 1 6

Poster W , Aebersold D , Blumstein N M hormonal therapy (2/19) and watchful waiting (12/19). cancer and infection, including HIV. Some opioids, 1Inselspital, University Hospital Bern, Radiooncology, Conclusions: [11C]choline PET/CT is a exellent through both central and peripheral mechanisms affect Bern, Switzerland, 2Inselspital, University Hospital examination for re-staging of prostate cancer patients immune function. Other opioids have little or no Bern, Radiology, Bern, Switzerland, 3Inselspital, after LDR-B with rising PSA values, allowing to known effect on immune function. In clinical practice University Hospital Bern, Urology, Bern, Switzerland, discriminate patients with local recurrence from this side effect may be overlooked potentially 4University Hospital Ulm, Nuclear Medicine, Ulm, patients with distant metastasis with a potential impact compromising the care of patients with cancer or Germany, 5Public Hospital Göttingen, Urology, on the consecutive therapy. infection. Göttingen, Germany, 6Inselspital, University Hospital Current evidence from clinical studies suggests that Bern, Nuclear Medicine and Radiooncology, Bern, morphine and methadone are predominantly Switzerland immunosuppressive. Buprenorphine and oxycodone appear immuno-neutral. Fentanyl has been shown to Aim: The prognosis of patients (pts.) with less than 5 increase natural killer cell activity in human studies metastasis (mets) is significantly better than in pts. despite appearing immunosuppressive in in vitro suffering from multiple mets (Singh, 2004). Therefore studies. Tramadol has repeatedly been shown to early detection of bone mets might be useful. We enhance NKCC and this is thought to be due to its compared the feasibility of 11C-Choline-PET/CT (CPC) serotonin reuptake inhibition. In animal models for the detection of bone metastasis (BM) to bone scan Tramadol reduces the risk of metastasis and has also (BS) and 18F-Fluorid-PET (F-18 PET). CT imagines been shown to preserve immune function in patients acquired during PET/CT were used as reference. undergoing surgery. Methods: In 86 pts. CPC`s covering neck to Studies in macaques infected with SIV indicate that prox.femora were performed and compared to the morphine causes a higher viral load and increases the results of BS and/or F-18 PET. The 3-D volume of BM likelihood of death. and the focal C-11 choline uptake (SUV) was measured Although studies have shown that Methadone and the visibility of BM in CPC was compared to CT, BS enhances HIV infection by up-regulating the expression and F-18 by four experienced readers. Results of CPC of T cell receptors, a recent study in heroin users has were compared with clinical data (antiandrogenic shown that both Buprenorphine and Methadone

66 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) preserve immune function compared with heroin use. studies found CRP to predict prognosis. Positive studies they felt better equipped to cope following the The immunomodulatory actions of individual opioids by tumor type: colorectal (16/21), renal cell carcinoma programme. may therefore need to be considered as part of the (16/21), gastrointestinal (12/14), lung (7/9), pancreas Conclusion: Due to the positive response by therapeutic decision-making process in managing pain (6/8), melanoma (5/5), breast (3/5), prostate (1/3). participants and increasing interest expressed by and addiction especially when there is coexistent Conclusion: CRP is valuable as predictor of survival professional organisations TPS has applied for further cancer or infection, such as HIV. and treatment outcomes in various tumor types. funding to continue this programme. Funding for this project was provided by the local University. PE 1.F70 PE 1.F72

PE 1.F68 From interviews to a nation-wide study on The voices of experience: An interpretative siblings having lost a brother or sister to cancer phenomenological analysis of parental accounts Impact of therapy with octreotide and allied to the quality of life following adult child butylscopolamine on frequency of emesis in Eilegard A1, Steineck G1, Kreicbergs U2 death malignant bowel obstruction 1Karolinska Institutet, Clinical Cancerepidemiology, Stockholm, Sweden, 2Karolinska Institutet, Women and Duro E J1, Aubeeluck A2 Eisner F1, Schippinger W1, Samonigg H1 Child Health, Stockholm, Sweden 1University of Derby, Psychology, Derbyshire, United 1Medical University Graz, Department of Oncology and Kingdom, 2University of Nottingham, School of Division of Palliative Medicine, Graz, Austria Little is known about the long-term psycho-social Nursing, Nottingham, United Kingdom consequences for siblings experiencing the suffering Introduction: Octreotide, a synthetic somatostatin and loss of a brother or sister to cancer. The objective The focus of this study was designed to explore the self analogue, reduces the secretion of gastric acid, enzymes was to find a suitable study design and cohort to reported experiences of subjective wellbeing and of the exocrine pancreas and lowers the motility of the investigate the long-term outcome of bereaved siblings quality of life within bereaved parents, following the upper gastrointestinal tract. Thus it is an effective in relation to different healthcare factors pertaining to death of their adult child. This project has sought to therapy in addition to butylscopolamine in the the brother or sister’s illness and subsequent death. A interlink the parents’ own thoughts, feelings and conservative therapy of malignant bowel obstruction questionnaire was developed after in-depth interviews experience of bereavement, and the subsequent coping (MBO). Here we report on a single center experience with 8 bereaved siblings. The questionnaire was tested mechanisms they have adopted during their daily lives. with octreotide and butylscopolamine in the treatment through face-to-face validations with another 8 This research design utilised a qualitative methodology, of MBO. bereaved siblings. Next, two pilot studies were done to and deployed an idiographic approach, which Patients and methods: From 330 patients admitted assess best logistic approach and response rate in incorporated interpretative phenomenological analysis to the Palliative Care Unit between 8/2007 and 10/2008 attempts to identify the most suitable cohort for a (IPA) coupled with a semi-structured interview process; eight patients have been treated with octreotide and nation-wide study in Sweden. The first pilot study to capture the parent’s own perspective of such a butylscopolamine and were included in this included siblings who had lost a brother or sister to phenomenon within this culturally sensitive domain. A retrospective analysis. cancer 4 to 17 years ago; 15 out of 29 (55%) responded. homogenous sample of bereaved parents was recruited, The frequency of vomiting in patients with MBO before The other pilot study included siblings who had to gain an understanding of this human experience. and during the first 9 days of therapy with octreotide experienced the loss 2 to 7 years ago: 15 out of 17 (88%) These subsequent parental accounts, relating to the and butylscopolamine was investigated. responded. A control group of non-bereaved siblings experience of adult child death upon parental quality of Results: The mean dosage of subcutaneously received a similar but smaller questionnaire on psycho- life clustered around five main super-ordinate themes, administered octreotide was 300 μg per day (range 150- social issues. In this group two logistic approaches, i.e. namely: 1500 μg per day). The mean dose of butylscopolamine preceding phone contact or not, were tested. The (i) Emotional Buffers associated with Parental administered subcutaneously or intravenously, was 45 response rate among those first contacted by phone was Wellbeing; mg per day (range 0-80 mg per day). At the day prior to 83%, (n=19/23) as compared to 50% (n=25/50) among (ii) Evaluation of the Impact of Death; initiation of therapy with octreotide and those not contacted. The results suggest that for a (iii) Effects of Bereavement; butylscopolamine the mean frequency of vomitings nation-wide study on bereaved siblings based on a (iv) Subjective Acceptance to Life Adjustment and was 4.4 per day. During combination treatment with postal questionnaire, an acceptable, participation rate is (v) Social Support. both drugs, the mean daily frequency of vomitings was difficult to obtain more than 7 years following the loss. Leading to the conclusion, that one’s subjective well- reduced to 1.4 on day 4 and to 0.5 on day 9. Moreover, the postal questionnaire should be preceded being, following the demise of an adult child, required Conclusion: Within the observed small group of eight by a personal phone call as it seems to promote the parent to find a place for the deceased child, which patients the combination of octreotide and participation. Before initiating the nation-wide study, it enabled the parent to remain, connected to the butylscopolamine was highly effective in symptomatic remains to analyse the compliance with the deceased; but in a manner that did not preclude them treatment of patients with MBO. In the present study, questionnaire, the results of which may prompt from getting on with their own life. However, these this treatment regimen reduced the daily frequency of modifications of some questions. accounts indicated a very slow reduction of parental vomitings by 89 % within 9 days. distress even after the passage of time. Yet, all the Further prospective studies will be necessary to evaluate parental accounts reflected upon the benefit of socially the definitive efficacy of octreotide. PE 1.F71 sharing their emotions with others. Moreover, this study revealed, the health care management of Bereavement support - A pilot project in rural bereavement was in need of profound modification; PE 1.F69 Australia which necessitated a greater emphasis upon the levels of professional intervention that focused upon talking C-reactive protein as a prognosis indicator in Morris V1, Beresford E1 therapies. This research was a self-funded project solid tumors: A systematic review 1North Coast Area Health, Community Health, Gold undertaken by the authors. Coast, Australia Walsh D1, Bennani-Baiti N1 1Cleveland Clinic, Harry R. Horvitz Center for Palliative Background: Subsequent to research attended in the PE 1.F73 Medicine, Dept. of Solid Tumor Oncology, Taussig above setting in regards the effectiveness of existing Cancer Institute, Cleveland, United States bereavement support provided by Community Cancer Distress in bereaved caregivers Care Team (CCCT) (presented in poster format EAPC Aims: In the last decades, studies showed correlations Venice 2006) it was found both inclusive in the Guldin M-B1, O’Connor M2, Jensen A B3 between inflammation and cancer. Serum C-reactive research and external anecdotal evidence compiled by 1University of Aarhus, Research Unit for General protein (CRP) levels were linked to prognosis and Tweed Palliative Support (TPS Volunteers) that a Practice, Aarhus, Denmark, 2University of Aarhus, sessions survival in malignancy. We systematically searched component of the bereaved community would value Psychotraumatological Research Unit, Aarhus, available literature to answer: In patients with solid the provision of formal bereavement support. Denmark, 3Aarhus University Hospital, Department of (Friday) malignancies, to what extent does serum level of CRP Following this the researchers reviewed existing Oncology, Aarhus, Denmark

predicts prognosis and survival? bereavement support programmes in the UK, Europe Poster Methods: MeSH terms were used [(prognosis OR and Australia, adapted and developed a programme Aim: The objective of this study was to investigate the treatment outcomes OR Survival) AND (C-reactive thought to be suitable for the rural Australian impact of the bereavement reaction in caregivers to protein OR CRP) AND (cancer OR Neoplasms)] to population. Additionally, TPS wrote a successful deceased patients treated in a specialist palliative care search the following electronic databases: PubMed, submission to fund a programme and made their venue team. The study aimed to identify caregivers in distress EMBASE, Web of Science, SCOPUS, EBM-Cochrane available to conduct the programme, transport was also up until 11/2 years after the loss. The study group was Central Register of Controlled trials and EBM-Cochrane offered to intending participants. compared to a non-matched group of bereaved persons Database of Systematic Reviews, and Biological Overview: Letters of invitation to attend are included not receiving palliative care to compare their level of abstracts/Biosis previews. This search included all in the bereavement support card sent to families by distress. publications until 2007. CCCT six weeks post bereavement. The qualitative Methods and design: Adult caregivers to deceased Inclusion criteria: English articles only; studies (all study reviews the evaluations of each of the five patients were asked to participate in a longitudinal study designs) of solid malignancies in adult sessions of the programme conducted on five separate study one month after their loss and until 18 months population; prognostic studies with CRP measurement. occasions in the past year. post loss. Included in the study were 87 bereaved Letters and comments type of publications were Setting: The programme was conducted in a large caregivers: 60 females, 27 males. At 18-months follow- excluded. family home which is currently the premises occupied up, 59 participated. Mean age: 53 years. The majority of Quality assessment of studies: A quality assessment by the TPS. The building is set in semi tropical the participants had lost a spouse. A bereaved non- (QA) scoring system was developed based on existing bushland. matched segment of the population in the same guidelines for observational cohort prognostic studies. Outcome: Five programmes were conducted by two geographical area served as a comparison group: N=296; It combines 5 criteria: study design, patient selection, facilitators over a five week period Participant numbers Mean age: 73 years. The participants were asked to prognostic variables, follow-up, and data analysis. Total varied from three to seven. complete a self-report questionnaire measuring score was expressed as percent of maximum score. Results: Overwhelming satisfaction as demonstrated in complicated grief (ICG-r), depression (BDI) and PTSD Studies that scored <50% were considered as an the body of this study included 100% recognition of (HTQ) at 1, 6, 13 and 18 months post loss. inadequate and were excluded. the importance of being able to share feelings and Results: At 18 months follow-up, 24% of the bereaved Results: 104 out of 168 articles were included in this experiences in a safe and nurturing environment. caregivers were still in distress, meeting criteria for preliminary analysis. 80 studies had a prospective Further to this participants recorded that it was helpful either complicated grief, depression and/or PTSD. 7% longitudinal design (only 12 with control group). 76 to know that there is no set pattern for grief and that of the bereaved caregivers met the criteria for all three

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 67 Poster sessions (Friday)

diagnoses. In the comparison group, 22% showed and mode of death, social support, family cohesion, individual responses. distress - meeting the criteria for one disorder while and grief reactions. Outcome variables include anxiety, Results: Initial results reveal a higher level of none met criteria for all three diagnoses. depression, sleeping difficulties, self harm, drug and confidence than anticipated in provision of various Conclusions: This study indicates, that ? of bereaved alcohol abuse and academic achievement. Our goal is aspects of care (both general and end of life care) by caregivers are still in distress 1? years after the loss. to include 1 000 teenagers bereaved of a parent between generic nurses with no LD training. Full data will be Compared to a non-matched bereaved population not the years 2000 and 2003 in a nationwide study in available on evaluation of questionnaires. receiving palliative care, the bereaved caregivers seem Sweden. An additional 500 non-bereaved and randomly Conclusions: The questionnaire has highlighted areas to experience more extreme distress following selected peers will also be included. Data collection is of educational need (as identified by respondents) bereavement. The results of this study raises the scheduled to 2009. Data will be analysed by which can be addressed through collaboration with questions whether bereaved caregivers receiving epidemiological methods. local /regional LD networks. Staff information leaflets, palliative care generally experience more extreme Implications: Findings may be used to prevent training sessions, and formal certified courses were distress and/or targeted bereavement support is unnecessary suffering and long term negative identified as helpful resources to meet educational insufficient in palliative care. psychological effects in bereaved teenagers. requirements.

PE 1.F74 PE 1.F76 PE 1.F78

Support groups for bereaved young adults, aged A bereavement service for children and Psycho-existential training for health care 18-30 years adolescents run by a charity. Development of a workers - Does this improve patient care and special programme for bereaved boys since 2005 - reduce burnout? Hultkvist S E K1, Alex R1 www.allesistanders.de 1Stockholms Sjukhem, Palliative Section, Stockholm, Gouveia e Melo C C1, Oliver D1 Sweden Freiherr von Hornstein W1, Bilger U1, Michels S1 1University of Kent, Centre for Work and Learning, 1Hospizgruppe Freiburg e. V., Projekt f. Trauernde Chatham, United Kingdom Background: A program aimed at improving support Kinder und Jugendliche, Freiburg im Breisgau, for relatives,and particularly relatives at risk for Germany Aims: Quality end of life care can be affected by the complicated grief, has been implemented at the health care workers´ own fears of life and death, which Palliative section, Stockholms sjukhem Foundation. The hospice movement in the German university city can interfere in their helping relationship with the One specific intervention offered in the program is the of Freiburg (Hospizgruppe Freiburg e. V.) established patient and family. This can lead to increased levels of support group for bereaved young adults who during itself as a charity of volunteers in 1991 looking after burnout. This research aims to evaluate the effects of a the previous six months have lost a parent or a sibling. terminally ill patients and their families. Since August course which would address these issues within a Aim: To offer support and bereavement management 2003 a bereavement service for children and therapeutic setting. within the frame of a group of young people, aged 18- adolescents with an internet platform was developed. Method: The course consisted of 6 days group therapy 30 years, in order to facilitate grief recovery and to Aims: We started to offer mourning groups for various with a maximum of 10 participants per group. 150 prevent future complications. ages and discovered that bereaved boys did not like to health care workers who work with dying patients, in Method: The bereaved young adult is invited to a participate spontaneously in a group. Therefore we and out of palliative care units, filled in questionnaires, support group, 1-6 months after the loss. The support tried to reach them through specialy designed offers for which have been evaluated in Portugal, to assess their group meets during ten weeks, once weekly during two them. level of personal well being, burnout, and the quality of hours. Frames are: the place - a nice lounge located at a Methods: With the financial support of «Aktion their helping relationship before and four months or distance from the hospital, the session-two hours, Mensch» we could finance a half time social worker’s over after the training. Qualitative interviews were weekly, refreshments are served and finally- a ritual to post for 3 years until October 2008 to help the carried out with 26 participants. open the session-every participant lights a candle in a volunteers to have a more structered support. There Results: The results revealed a significant glassbowl with water; a symbol of the deceased. The were developed groups for children (5-8 years), art improvement in the health care workers´ skills in the group session themes emerge from the participants therapy (5-17 y), working with wood (11-16 y), climbing helping relationship, (unconditional acceptance, feelings and thoughts, the tool is the process of the (6-18 y), home visits. In addition liaising with and positive regard, empathy and congruence) a significant group; the participants listening to, sharing and counseling of other support organisations was initiated, reduction in levels of burnout (decrease in emotional helping each other, rather than interventions of the public relations improved as fundraising done through exhaustion and depersonalization and increase in sense leaders. Themes can be identified, similar in all groups, various activities. of professional fulfillment), and a significant reduction such as: memories (from illness and death, but also Results: The highest numerical impact has our internet facing fears of life and death (pain, loss of dignity and from childhood and family),anger and guilt, platform with 30 daily visits. A third of the visitors are physical degradation, lack of meaning in life and close responsibility, death and continuing bonds, support boys. The children’s groups run on a weekly basis up to relationships with loved ones). There was also a positive and comfort and finally the future(fear and hope). 11 sessions. Art therapy encompasses graffiti (once off) correlation between reduction in fears and levels of Results: The group evaluations show that the support and accompanied painting. The carving of wood is burnout, reduction in fears and quality of helping given in the groups is much appreciated and helpful to limited to 4 boys for security and supervision reasons. relationship and reduction in burnout and quality of the young adults. Meeting others of the same age, In the climibing group are 6-9 boys. In all these helping relationship. sharing the same experience is the best way to activities boys tend to start to talk to each other while Conclusion: This study shows that education with normalize and cope with feelings of pain and doing things. This is in complete opposition to girls personal development in palliative care may be loneliness. who can sit down in a group and speak to each other. effective in addressing the health care professional’s Conclusions: Support groups for young adults are a Home visits were organised for 4 boys while the singel personal fears regarding life and death, in order to helpful tool to facilitate the grieving process and to mother was dying of cancer. enable them to effectively care for the dying without prevent illbeing in the future. Young adults are a Conclusion: The expression of emotions and feelings avoiding a meaningful helping relationship with the vulnerable group and when someone significant to is essential in a bereavement process. Boys need a more patient and without suffering from burnout in their them has died, they benefit substantially from the practical way of expressing themselves. If they are working environment. experiences and support of others in a similar situation. denied of an appropriate expression they are at risk of This research was funded by the Calouste Gulbenkian not finding a new sense and meaning in their life Foundation. through the loss of a loved one. PE 1.F75 PE 1.F79 Teenagers loosing a parent to cancer - Risk PE 1.F77 sessions factors causing long term morbidity Development of service learning in an end-of-life Hospital nurses understanding of the palliative setting; An interpretive descriptive study

(Friday) Bylund Grenklo T1, Fürst C J2, Valdimarsdottir U2, care needs of patients with learning disabilities: Kreicbergs U2, Steineck G2 A survey questionnaire Funk M N1 1 1

Poster Karolinska Institute, Clinical Cancer Epidemiology, Thompson Rivers University, Nursing, Kamloops, Stockholm, Sweden, 2Karolinska Institutet, Stockholm, Cooper M1, Gambles M2 Canada Sweden 1Marie Curie Palliative Care Institute Liverpool, Liverpool, United Kingdom, 2Marie Curie Palliative Care Palliative care education and experience at the Background: Some bereaved individuals suffer health Institute Liverpool, Evaluations Team Marie Curie beginning of the nursing curriculum, although consequences that lasts years after the loss. Hospice Woolton, Liverpool, United Kingdom challenging, is worthwhile as it helps prevent students Bereavement literature, including all causes of death, from developing false ideas and assumptions about care suggests that this loss-related morbidity may be caused Since the closure of long stay institutions people with of the dying (Mallory, 2003). With an aging population by specific risk factors from within the intrapersonal Learning Disabilities (LD) access mainstream health and concurrent prevalence of chronic disease, the and interpersonal sphere as well as the nature of death. services. People with LD are living longer and more demand for end-of-life care will increase considerably There are several studies of adults bereaved by cancer. likely to develop age-related illnesses such as cancer, in the near future (Canadian Hospice Palliative Care Research findings suggests that beyond loss itself, thus, requiring Palliative Care (PC) services. Association, 2007). Therefore, preparing nurses to bereaved adults have been subjected to additional Aims: To assess the skills and confidence of hospital provide excellence in end-of-life care is essential. trauma, often related to treatment and care, that nurses in addressing the Palliative Care needs of By attending to those who are dying, nurses have a increases the risk for long term psychological distress. It patients with LD. unique opportunity to be present during poignant is not known whether these health care related factors Method: A survey questionnaire was designed and moments in both patient´s and their family´s lives. have lasting negative effect also on bereaved youths. distributed to a sample of 109 senior nurses, and Providing end-of-life care early on in the early part of Aim: The aim of this study is to find out if bereaved Palliative Care Network nurses (ward based link nurses) the nursing baccalaureate program is a facet that thus teenagers suffer long term psychological distress and if in a large acute teaching hospital. The dimensions far has not been implemented at Thompson Rivers this is determined by health care related factors. examined included various aspects of holistic care for University. In doing so, this gives students a chance to Methods: A study specific questionnaire has been this patient group, including awareness of tools / look at core services (Health Canada) and for the developed based on 16 semi structured interviews and policies / other care agencies that may aid assessment / service partner, there are opportunities for recruitment face-to-face validation sessions with bereaved teenagers care. The study also examines recognition of dying, and and retention. and on relevant literature. Items are constructed around confidence in provision of end of life care. The proposed interpretive descriptive study will allow communication, perceptions and experiences of Dimensions were recorded on a likert scale where 1= for an opportunity to build bridges between Thompson treatment and care, including symptom management strongly agree to 5= strongly disagree, with free text for Rivers University and community service partners

68 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) while at the same time offering a more formal palliative implement and evaluate a practice development directives (living wills) which was of little relevance to educational component as part of the nursing programme for the residential care workforce that the concerns of their patients. They perceived a series curriculum thus receiving a better rounded learning enhanced their resident’s end of life care experiences. of barriers to ACP: resources; training and education; experience. The programme adopts a range of teaching and relationships with colleagues/ patients’ families; This project will promote nursing student education as learning approaches to help maximise learning and concerns about patients’ reactions. They recommended well as provide support to under serviced community assist in application of theory to practice for the following should be included in any education partners who specialize in providing palliative care to participants. Alongside study days and a workbook, programme: design of ‘real’ scenarios for training; members of the Kamloops community in British another key aspect is facilitation by one of the hospice design of a flow chart; practical advice about Columbia, Canada. educators in each home to help support learning and communication and documentation. The aim of the research is to further understand the sustainable developments in practice within each Conclusion: Nurses working in the community are at learning that student´s experience early on in their participating home. the forefront of working with patients with palliative bacclaureate education. Interpretive descriptive Given the distinct nature of the approach and the staff care needs who may wish to set on record their views methology will be utilzed in November and Deceomber group involved it was felt important to measure the about future care and treatment. This study reveals 2008 through focus group discussions. impact of the programme on individual participant’s some important areas for practice and educational level of knowledge and on end of life care in the homes development to enhance nurses’ use and through a formal research evaluation. This educational understanding of ACP. PE 1.F80 approach is therefore being evaluated through the use Funding: Burdett Trust for Nursing. of a pre and post education palliative care quiz and two Advance care planning in a large tertiary focus groups with programme participants. Although hospital: Results of a hospital-wide intervention there is some evidence of the impact of the programme PE 1.F84 on individuals and residential homes, all research data Piers R1, Van Den Noortgate N1, Benoit D2, Schrauwen W3 will be analysed by December 2008 with clear findings Current status of physicians in Austria having a 1Ghent University Hospital, Geriatrics, Gent, Belgium, detailed. diploma in palliative medicine 2Ghent University Hospital, Intensive Care, Gent, Belgium, 3Ghent University Hospital, Oncology and Werni-Kourik M1, Pinter G2, Zdrahal F1, Dorner W3 Palliative Care, Gent, Belgium PE 1.F82 1Austrian Society for Palliative Care, Vienna, Austria, 2Austrian Medical Association, Vienna, Austria, Aim: The aim of the study was to observe if a hospital- Connecting European universities: An experience 3Austrian Medical Association, Executive Board, Vienna, wide intervention could change pro-active EOL (end-of- of higher education strengthening in palliative Austria life) behaviour of physicians on the hospital wards. care, through TEMPUS PROGRAMME, founded Methods: The study was performed in the Ghent by European Commission, in collaboration with Aims: After a two year planning phase between the University Hospital, a tertiary hospital of 1062 beds. the no-profit Italian foundation, Fondiaria-SAI responsible members of the Austrian Society for The intervention consisted in Palliative Care and the Austrian Medical Association, a 1) informing hospital staff on the Belgian laws on Mannocci Galeotti M1, Orsi L2, De Gaudio A R3 special diploma for Palliative Medicine was Patient’s Rights and Palliative Care and 1State University of Firenze, Firenze, Italy, 2NHS, implemented in November 2002 as a form of 2) introduction of a new DNR form. Palliative Care Unit, Crema, Italy, 3State University of subspecialisation. In order to receive this diploma, Data concerning EOL decisions and documentation on Firenze, Anesthesiology & Intensive Care, Firenze, Italy physicians are required to attend at least sixty hours of the written DNR form were collected before and after education in palliative care, either taking part in an the intervention. EOL decisions in all adult patients TEMPUS PROGRAMME is aimed to strengthen the interdisciplinary or a monodisciplinary course. We are who deceased during a 12-week period in 2007 and a higher education institutions within Europe in all interested in the fact, how many Austrian physicians 16-week period in 2008 and who were admitted at least University Disciplines. The University of Firenze have a diploma in Palliative Medicine, and also to find 2 days on a non-ICU ward in their final hospitalisation developed the specific project Palliative and Pain out if there are any differences within the nine (in whom it was possible to address EOL issues) were Medicine Project (PPMP), aimed to increase the know- provinces in Austria. studied. how of Palliative Care within University as well as Methods: Data were collected from the statistics of the Results: In table 1, a summary of all quality indicators strengthening the colleagues already working in this Austrian Medical Association. In the evaluation we are listed. No significant differences were observed field or interested to became palliativist. We want to specified between general practitioners and between both periods. However, improvement in share the complete circle of our biannual project, consultants. In our statistics we compared the various filling-in the written DNR form was observed: implemented since September 2007. It is a fruit of a provinces in Austria including the relationship between physicians significantly more frequently noted down close collaboration among Universities of different the numbers of inhabitants to the number of who participated in the DNR decision (for participation countries, with different levels of academic training physicians who have been awarded a diploma in of family: 44% vs. 63% (p=0.022), for nurses: 14% vs. postgraduate offer in Palliative Care. University of Palliative Medicine. 27% (p=0.047)) and why the DNR decision was Firenze will present the planning phase worked joint Results: The evaluation between 2002 and 2008 shows installed (32% vs. 59%(p= 0.001). with the Fondiaria SAI foundation, in order to identify that from a total of 1484 physicians who have received other University partners: Universities of Lyon, Beograd a diploma for Palliative Medicine in Austria, 57% were and Zagreb. How we have defined the contents and general practitioners and 43% were consultants, most All deaths Patients dying on non-ICU No DNR method of Pain and Palliative Care. The of them for internal medicine (50%), Patients dying with DNR form Dying on ICU ICU stay implementation phase in Serbia and Croatia: selection neurologists/psychiatrists (19%) and anaesthetists last episode Dying without DNR form DNR code 0 (full of participants and the local training, ended in June (12%). Compared with the number of inhabitants therapy) or 1 (no CPR only) First DNR within 48 h 2008 (followed by about 150 attendants). Hence the Salzburg has the most physicians with a diploma in before death Information patient reported by physician internships of 30 participants in Firenze, in Crema and Palliative Medicine, at the bottom end of the statistics is Information patient reported on DNR form in Lyon. The E-learning follow up and the Styria. Nearly five percent of all Austrian physicians Participation nurse (involved) Pre- intervention communication strategies implemented. In conclusion (31.564) achieved a diploma in Palliative Medicine. (n=115) 23% 37% 8% 4% 4% 91% 25% 61% Post- we will present the lessons learned by overcame Conclusion: This study indicates that since 2002 1484 intervention (n=113) 22% 40% 13% 5% 8% 89% 40% obstacles, the weakness, the participants’ evaluation, Austrian physicians have received a diploma for 57% p= 0.731 0.629 0.332 0.690 0.493 0.390 0.064 the outputs and future perspectives. Palliative Medicine awarded by the Austrian Medical 0.787 http://www.palliative4pain.org Association. We found regional differences between the Conclusion: Physicians better filled-in the written nine provinces. Implementing a diploma for Palliative DNR forms after being informed about theoretical Medicine was an important first step in integrating backgrounds of the new DNR form. However, the PE 1.F83 basic knowledge regarding palliative care into the intervention had no impact on the pro-active EOL postgraduate training for physicians. sessions behaviour of physicians measured by predefined Views, experiences and educational needs of quality indicators. community nurses about advance care planning (Friday) PE 1.F85 1 1 1 1

Seymour J E , Kennedy S , Almack K , Crosbie B , Welton Poster PE 1.F81 M2 Working together: Challenges and opportunities 1University of Nottingham, School of Nursing, in delivering and designing Communication Using an innovative educational programme to Midwifery and Physiotherapy, Nottingham, United Skills Training across one UK Cancer Network enhance end of life care in residential care Kingdom, 2Sheffield Teaching Hospitals NHS Trust, homes Sheffield, United Kingdom Russell S J1, Fowler C2, Hemming L3, Plummer S4, Savage M5 1Hospice of St Francis, Education, Berkhamsted, United de Renzie-Brett H B1, Fear T2 Background: Advance care planning is a means of Kingdom, 2East & North Herts NHS Trust, Welwyn 1Dorothy House Hospice Care, Education, Bradford-on- setting on record views or wishes about care of patients Garden City, United Kingdom, 3University of Avon, United Kingdom, 2University of the West of who may lose capacity in the future. Health Hertfordshire, Nursing and Midwifery, Hatfield, United England, Faculty of Health and Life Sciences, Bristol, professionals are encouraged to implement ACP in their Kingdom, 4Peace Hospice, Watford, United Kingdom, United Kingdom practice as part of the new End of Life Strategy for 5Beds and Luton pCt, Luton, United Kingdom England. Little is known about their experiences with Current UK government initiatives highlight the ACP. Aim: Primary, secondary, independent, National requirement for improved standards of care for those at Aim: To examine how community nurses working in Health Service and Universities worked together to the end of life. A central tenet is that people should be palliative care view their roles in ACP, what barriers deliver and quality assure network wide able to make choices about care at this time, including they perceive and what their educational needs are. communication skills training. being able to decide where to die. Care homes are Method: We used an action research strategy, Design and statistics: Developed from short sessions playing an increasingly important role in providing end emphasizing practical knowledge to effect change in to degree and masters level, there is an agreed of life care, in particular residential homes. With this in practice. We recruited 23 community nurses with curriculum ensuring a similar learning experience mind an established hospice education centre diverse roles in palliative care from two cancer networks wherever the courses are accessed. The programme for developed an innovative educational programme in England. The nurses took part in 6 focus group clinical, volunteers and administration staff moves aimed at residential care home staff in twenty homes discussions and three follow up workshops. Data was from essential skills training to intermediate, topic who have not been as visible as their nursing home analysed using a framework approach. specific and a 3 day Advanced Communication Skills colleagues in accessing training in this field. Findings: Most nurses had little detailed knowledge of Training (ACST). Every year nearly 400 participants The overall aim of the project was to develop, ACP. They perceived a policy focus on instructional attend (200 essential, 12 intermediate, 100 topic

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 69 Poster sessions (Friday)

specific, 70 ASCT). The training is facilitated from a The toolkit included skills for breaking and dealing and skills were tested by questionnaire and direct variety of roles in cancer and palliative care. A ‘training with bad news; effective communication; identifying observation. Students were tested immediately after the the trainer’ model is implemented ensuring confidence personal fears of death to gain self awareness; religious intervention. Retention of learning was tested in a and competence in delivery. There is a high satisfaction and cultural acceptance; professional knowledge and subset (n=9) ten days post teaching. A group interview of the learning objectives, content and delivery and standards. Training methods included role playing, was also used to determine the nurses’ perceptions of evidence that the ASCT changes participants skills and group dynamics, workshop exercises and theoretical their knowledge and skills. behaviour. Challenges are sustaining the facilitators lectures. Results: There was no significant difference in baseline time, skills, funding, fitting in obligations to employer, Results: Nurses expressed high satisfaction from the or post-teaching knowledge or skill scores between the targeting health and social care professionals to attend. course. They reported improved coping with personal 3 groups (p>0.05). All scores significantly improved Benefits include support for participants and emotions and more confidence when dealing with the post-teaching [n=25, median (range): Knowledge 16 (7- facilitators, networking across organisations, dying time. They felt more capable when caring for the 37) to 30 (15-40), p<0.001; Skills 3 (0-8) to 10 (5-14), collaborative reflection on the programme, choice of dead body and bereaved family. Teamwork was p<0.001]. Furthermore there was no significant change academic accreditation, delivering national policy at perceived as the main source of strength. in scores post-teaching to day 10 (p>0.05, n=9). Sub- and by local providers. The way forward - Review of all Conclusion: Nurses can benefit from support and analysis showed greatest improvement in skills rather communication skills sessions to link into future training programs to use when caring for the dying in than knowledge. For knowledge, the greatest area for sessions including palliative care competencies, general hospitals. A vital part of nurses achieving further improvement was ‘emergency equipment’ and holistic, spiritual and psychological assessments, as well Composure in the face of death is addressing personal hence further teaching will address this area in a as other end of life groups, widening access and feelings and fears that can be obstacles to being there different way. availability of all types of courses to all health and for the patients and families at the end of life. Conclusions: This study demonstrated poor social care professionals, measuring the impact this has The presentation will include a brief exercise in guided educational baseline levels. A focused teaching for clients and their families. imagery to allow the audience to experience their own intervention promoted learning. This study highlighted Conclusions: Working together although challenging fears of death. This insight was at the heart of the the need for ongoing education and assessment in this in terms of process reaps benefits in terms of course. field. participants and facilitators experience and quality References: assuring a education programme. 1 Donnelly, J. Journal of Clinical Nursing 2006;15:1115 PE 1.F88 2 Day, T. JAN 2002;39:35 3 Ofori, R. JAN 2001;28:507. PE 1.F86 An innovation in end of life care nurse education

How to teach about death and dying? Bryan L1, Hartley N A2 PE 1.F90 1St Christopher’s Hospice, Sydenham, United Kingdom, Macková M1, Lazárková M2 2St. Christopher’s Hospice, Supportive Care, London, A student self learning module for the palliative 1Masaryk University, Medical Faculty, Department of United Kingdom care unit: You the learner, the person in your Nursing, Brno, Czech Republic, 2Nursing College, care & the interprofessional care team Znojmo, Czech Republic Aims: Workforce development is a priority of the Department of Health’s End of Life Strategy (2008). Brajtman S1, Hall P2, Weaver L3, Mullins D4, Bekele E4, In spite of the fact that the Czech Republic has Hospices, specialists in end of life care, provide Barclay K4, Barnes C4 undergone a lot of changes and also thinking and inpatient care for 4% of those who die each year and yet 1University of Ottawa, School of Nursing, Ottawa, attitudes of people have been transforming gradually, over 50% will die in an acute hospital. How can these Canada, 2Bruyere Continuing Care, Palliative Medicine, approximately 80% of people still die in institutions. specialist centres effectively share best practice and Ottawa, Canada, 3Bruyere Continuing Care, Palliative The reasons of this situation are multifactorial, one of contribute to the development of the acute sector Care Education, Ottawa, Canada, 4Elisabeth Bruyere the most important determinants being an inadequate workforce? St Christopher’s Hospice, Sydenham, was Research Institute, Palliative Care Research, Ottawa, preparedness of the professional and lay public for approached by an acute trust hospital Medical Unit to Canada dying at home. For death as a common part of life. This provide training in ‘End of Life Care’ to the Ward paper will inform about the possibilities of preparation Managers. Each manager was released for one week in Our aim was to teach learners in health science of caregivers for their work with dying people. Describe small groups of three or four over a period of four professions about Holistic Care, Collaborative Practice, teaching methods aimed at formation and modelling weeks. St Christopher’s designed a programme which and the Humanities (human experience, historical of the students attitudes (branch: General Nurse) empowered this team to return to practice equipped to perspectives, ethics and law, professionalism). Learners towards chronically ill and dying people. For example make a sustainable difference to patient and carer in undergraduate and postgraduate programs (e.g. RWCT, snowbaling, brainstorming:what we know - experience at end of life. medicine, nursing, pharmacy) went to either a module what we want to know - what we learned, rationale Methods: The programme offered a wide range of unit or non-module unit for clinical placement. In a map). Then describe how to use selected teaching learning activities both practical (participating and pre/post survey design 2 tools were used: methods for: observing) and theoretical (listening and debating). 1) Attitudes Toward Healthcare Teams [scores indicate • definition of the basic concepts (chronically ill Each participant spent two of their five days in practice positive attitudes towards working in interprofessional people, pain, suffering, dying, death); working alongside a specialist ward nurse interspersed teams on 3 subscales: • identification of one‘s own feelings and needs, and with three days working with an educational facilitator. i) Physician Shared Role - a shared role for the physician self reflection; The focus of the facilitation was on providing a on the team rather than a traditional physician • identification of the needs of chronically ill and supportive learning environment in which participants dominant role in decision-making dying people; could reflect on current personal and organisational ii) Team Efficiency • identification of the attitudes of chronically ill people practice in the light of new information and iii) Team Value. towards suffering and pain; observations. The new learning was used to inform a 2) Knowledge based questions were developed to • identification of the attitudes of dying people towards collective action plan for self, team and organisation. measure knowledge gained about Holistic Care, death; Results: The immediate positive impact of the Collaborative Practice, and the Humanities. • finding the way of support for chronically ill and programme on the understanding and attitudes of the Comparing Module vs. Non-Module Learners on the dying people; participants was evaluated through the examination of pre and post surveys: • finding the way of support for the family members of data collected from individual reflections and small Paired t-tests for the attitude scales showed that module chronically ill and dying people. group work. Feedback from senior nurse managers and learners changed their attitude more in favour of a The paper is aimed at familiarization with the the wider multidisciplinary team confirmed increased shared leadership role for physicians on the team and methodology of the teaching process and evaluation of skills, competence and motivation in the nursing team. rated interprofessional team efficiency higher. Chi- sessions its benefits. Conclusions: Hospices, as specialist centres, can Square tests for the knowledge questions showed: provide direct, effective and economically viable end of a) no significant difference in their scores [incorrect,

(Friday) life care training for whole teams of care providers. partially correct, and completely correct] on pre- PE 1.F87 evaluations

Poster b) post-evaluation scores improved for 2/5 knowledge Teaching composure: Enhancing nurses end-of- PE 1.F89 questions [Holistic Care and Human Perspectives]: a life skills in a multi-cultural society significantly higher percentage of module learners had Tracheostomy care in a hospice setting: A study completely correct scores. Cohen G1, Ben-Nun M2 to evaluate the impact of a tracheostomy In conclusion, the self-learning module 1Kaplan Medical Center, Oncology Department, teaching intervention and assessment on a) is an effective tool for teaching holistic care, Rehovot, Israel, 2Kaplan Medical Center, General qualified nurses’ level of knowledge and skill interprofessional teamwork, and the Humanities in any Intensive Care Unit, Rehovot, Israel health science profession Barber C E1, Barrett M1, Ross J R1 b) can be adapted to undergraduate curricula [teaching Many hospital nurses feel uncomfortable with death 1St Joseph’s Hospice, London, United Kingdom basic concepts in classrooms leaves more time in and caring for the dying. Composure, the ability to be clinical placement to focus on learning activities that there for the dying patient and family, can be taught Background: Small numbers of patients with a promote interprofessional interactions and reflection] while addressing personal fears about death. tracheostomy are admitted to a hospice (2/yr in our 48 c) framework can be adapted to any topic in any care Aims: A course was designed to provide hospital nurses bed unit). They have complex needs and their quality area. with a toolkit of skills to improve the quality of End of of life can be poor1. It is vital that nurses’ providing care life (EOL) care in an acute setting. The intervention was possess the necessary knowledge and skills. Evidence measured by 2 questionnaires pre and post course. One suggests that nurses are not educated or experienced in measured perceived competence in EOL care and the this area2. Teaching interventions are not always Death Anxiety Scale (DAS) explored personal fears. An effective in promoting learning3. evaluation form was given for feedback. Aim: To evaluate whether a teaching intervention and Methods: 22 female nurses (RN) working in a general assessment improved the knowledge and skill levels of hospital aged 25-60 years met for 14 weekly sessions of nurses’ with regards to tracheostomy management. 2 hours. Their backgrounds included European, Arab, Methods: Knowledge and skills were evaluated for 25 North African, and Ethiopian. Religions were Jewish nurses at baseline and following a teaching and Muslim. The myriad cultures reflected those of intervention. Training was delivered in 3 groups with patients and families. identical teaching format and facilitators. Knowledge

70 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday)

PE 1.F91 the nurses for the hospice concept, also, deliver the process and is geared toward ensuring that basic needs appropriate terminal care for dying patients. for respect, dignity and physical comfort are sustained Humour in palliative care - A new concept for until the end. education and communication Preliminary data from brochure feed-back is presented PE 1.F93 as a case in point. Suggestions will be incorporated into Kessler A1, Iser K2, Dreher U3, Mueller M2 future print runs and the online versions of the 1Oberschwabenklinik gGmbH, Internal Medicine- Predictors of Spanish hospital nurses’ brochure - available in Adobe PDF-format via the Hematology and Oncology, Ravensburg, Germany, experiences of caring for terminally ill patients network’s website. 2Lachmuskel Clinic Clowns, Ravensburg, Germany, Conclusion: Communication tools play an important 3Oberschwabenklinik gGmbH, Internal Medicine - Arantzamendi M1, Corchon S1, Carvajal A1, Martínez M2, part in end-of-life care (caregiver) education as knowing Palliative Care Team, Ravensburg, Germany Richardson P A3, Addington-Hall P J4 what to expect may help to cope. 1Escuela de Enfermeria Universidad de Navarra, Funding: Core funding is provided through a grant We initiated in our palliative care unit an Departamento de Enfermeria de la Persona Adulta, from the Networks of Centres of Excellence (NCE) and interdisciplinary project to determine the feasibility of Pamplona, Spain, 2Clínica Universidad de Navarra, the International Development Research Centre, humour therapy as a new offering for our patients. Our Unidad de Medicina Paliativa, Pamplona, Spain, 3Kings Canada (IDRC). intent was to train the whole staff to integrate humour College London, Florence Nightingal School of Nursing techniques into every day clinical practise and & Midwifery, London, United Kingdom, 4University of communication with the patient. The expression Southampton, School of Health Sciences, PE 1.F95 “humour” is used for an overall concept comprising Southampton, United Kingdom several measures with the goal of general contentedness An integrated four year curriculum in palliative and improved communication. The quality of care hospitalised terminally ill patients care for medical undergraduates Methods: The training of the palliative care team receive needs improvement. Nurses play a central role members took place in 10 teaching units. The lessons in the care of these patients. Currently we don’t know Radwany S1, Frate D2, Palmisano B3, Sanders M3, Stovsky E2 comprised of oral presentations, role plays, acquiring of which personal and professional factors influence 1Summa Health System, Hospice and Palliative Care humour techniques, creating of humour suitcases for nurses’ experiences of caring for terminally ill patients; Services, Akron, United States, 2Summa Health System, every day work and development of a humour and consequently the care that they provide. This study Internal Medicine, Akron, United States, 3Northeastern questionnaire. A special humour day with two therefore sought to explore hospital nurses’ experiences Ohio Universities College of Medicine and Pharmacy, professional clinic clowns working together with of caring for these patients and to identify personal and Community Health Sciences, Office of Palliative personal and patients is performed monthly on a professional factors influencing these. In this mixed Medicine, Rootstown, United States regular basis. Additionally a new interior design for the method study, a questionnaire was developed on the palliative care unit will be developed with team and basis of findings from observational and interview data. Aim: Describe strategies for development, patients. A survey was conducted of all nurses working on acute implementation, and evaluation of a longitudinal PC Results: 90% of our personal actively participated in wards with terminally ill patients in eligible hospitals in medical school curriculum and the challenges and the training. The overall perception is that it will help Navarre, Spain. 165 nurses participated (65% response barriers to overcome. to prevent burn-out. The team spirit has increased. rate). Factor analysis was carried out to identify the Methods: This is a retrospective, descriptive study Every patient who took part in a humour intervention latent structure of nurses’ experiences and regression to based on data collected during curriculum design and has been taken by the concept. Humour was helpful in identify the personal and professional predictors of implementation. coping with their situation and it increased their mood. these. Results: Curricular content was designed by an The communication with patients was made easier as Results: Factor analysis revealed 5 main factors interdisciplinary team including basic and clinical well. By measuring pain in general with VAS (visual regarding nurses’ experiences with terminally ill sciences faculty, behavioral and community health analogue scale) a positive effect was underlined by patients: ‘Learning process’, ‘Discomfort with death sciences faculty, RNs, social workers, spiritual leaders, significantly less intense pain. and dying’, ‘Nature of nursing care’, ‘Challenges with and students. Pre-clinical students train in patient Conclusion: For the treatment of our hospitalised caring’ and ‘Motivation to care’. Nurses positively interviewing and receive lectures and reflective patients humour therapy is a noteworthy addition to valued the learning experience of caring for terminally discussion sessions on integral PC topics. Curricula for traditional treatment modalities and a useful ill patients, but perceived care of these patients to be clinical students include PC modules during the communication device. The concept can be easily more demanding and challenging than other groups. Internal Medicine (IM) clerkship and visits to home acquired and adapted to several inpatient and Competence to care emotionally explained changes in hospice patients in Family Medicine (FM). Graduating outpatient situations. The benefit for the patients and ‘Discomfort with death and dying’ and ‘Challenges students participate in a mandatory case-based, staff is enormous. Very important is the regular with caring’; and post registration education explained interactive module covering key aspects of end-of-life repetition of supervised practice and theoretical changes in ‘Nature of nursing care’ and ‘Motivation to care: hospice, DNR orders, family meetings, pain and background. care’. Likewise, support at work explained variance in symptom management, death pronouncement, and We gratefully thank Lions Club Ravensburg and the factor ‘Motivation to care’. Regression models pediatric palliative care. All required clinical rotations Tognum AG Friedrichshafen for their financial support. explained between 31% and 12% of factor variance. will have PC content by 2010. Evaluation strategies Conclusion: Post registration education, support and include student, patient, and faculty assessments; perceived competence to care emotionally for content questions on student examinations; and PE 1.F92 terminally ill patients need to be tackled in order to Objective Structured Clinical Evaluations (OSCE’s). An improve nurses’ experiences with terminally ill Office of Palliative Medicine was established at Effects of “hospice nursing training program” patients; and thus the quality of care patients receive. NEOUCOM to coordinate the PC curriculum while a for dying patients care behaviors of nurses in PC Student Interest Group was formed by the student non-hospice care unit body to focus their interest and efforts in this field. PE 1.F94 Conclusion: Efficient use of time and resources has Chen W-I1, Chiou Y-G1, Chang P-R2, Yai C-Y1 allowed a generalist undergraduate PC curriculum to 1ChangGung Memorial Hospital, Nursing Department, Knowing what to expect may help to cope flourish within a community-based medical school. Kaohsiung Hsien, Taiwan, Republic of China, 2Fooyin Sustainability will depend on continued support from University, School of Nursing, Kaohsiung Hsien, Klinger C1, Savoie M2, Mc Donald L3, NICE End-of-Life the medical school and the community. Ongoing Taiwan, Republic of China Issues Theme Team evaluation of the palliative care curriculum will assess 1University of Toronto, Department of Health Policy, physicians’ knowledge and skills for meeting patients’ Aim: The aim of this study is to describe the care Management and Evaluation, Toronto, Canada, end-of-life care needs. behaviors of non-hospice care unit nurses after 2Veterans Affairs Canada, Montreal, Canada, 3University The Robert Wood Johnson and Summa Foundations “hospice nursing training program”. of Toronto, Factor-Inwentash Faculty of Social Work, funded this study. sessions Methods: This study was a quasi-experimental deigned Toronto, Canada study. There were fifty nurses attended the “ hospice (Friday) nursing training program”. The care behaviors of the Aim: A Canadian network of researchers, practitioners, PE 1.F96

nurses were self-reported by structured questionnaire, students and seniors with an international arm Poster which was good reliability and validity. All participants dedicated to improving the care of older adults around The ”Chain of Palliative Care” and the ”public completed the hospice nursing training program for the globe is working on research-based communication knowledge approach” - New concepts for two months. Three months after finishing training tools to assist terminally ill persons, their families, introduction of palliative care to the public program, participants self-reported the questionnaire friends and caregivers in dealing with various aspects of for understanding the knowledge, attitude, and care this important phase of life - including advance Bollig G1 behaviors during the nursing care. All the participants directives, education, pain assessment and 1Bergen Red Cross Nursing Home, Palliative Care Unit, were informed the purpose and procedure of the study. indicators/symptoms of an approaching death. Bergen, Norway Results: All the participants were under fifty years old Method: The presentation will highlight the work of with average 9.94 years being a nurse. 94% nurses were the network’s End-of-Life Issues Theme Team including Aim: To describe concepts that could enhance not working in oncology or hospice unit and 90% priority setting, tool development, content milestones awareness of Palliative Care in the public, lead to better having terminal patients care experiences. The findings and messaging - also featuring care for the caregiver as knowledge about Palliative Care and extensive of this study were supported the training program was an often neglected aspect within the continuum of provision of Palliative Care for the entire population. useful and satisfied for more than 95% participants. care. Methods: A search was conducted in databases for The knowledge was improved. The attitude for some Attention is also drawn to the important aspect of scientific journals (e.g. Pubmed/Medline, CINAHL), the participants was changed but not in statistics significant ongoing (program) evaluation/feed-back on tools. The Internet and reference lists of books and articles. Based difference. Furthermore, the confidence of dying care international arm of the network is essential in the on the critical review of existing concepts new concepts was increased in physical care(p<.00), psychological review of cultural sensitive approaches throughout the and ideas emerged and will be presented. New concepts care(p<.00), spiritual care(p<.05), DNR and hospice process. for the implementation of Palliative Care overall are communication(p<.00), as well as family care(p<.00). Results: An informational caregiver brochure entitled needed. Conclusion: The hospice nursing training program “What To Expect When Someone Close To You Is Results: There is a great demand for the was useful for the nurses in hospice unit as well as the Dying”, distributed in co-operation with a major implementation of Palliative Care in Europe and other nurses in general units for caring the terminal patients. Canadian health care service provider, is featured as a industrial countries, especially for old and demented Also, hospice cooperative care is very important for the specific example. Written in lay terms and translated people. Many old and demented people do need terminal patients in non-hospice unit. Thus, hospice into major languages spoken by Canada’s immigrant Palliative Care but do not have access to it. The nursing training program should be scheduled for all population, it tries to assist with the decision-making knowledge of health professionals and the public about

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 71 Poster sessions (Friday)

Palliative Care is low. disposal of bodies. In the palliative care rotation literal misunderstanding, advanced cancer treatment Conclusion: Two new concepts are described: The medical staff conduct teaching ward rounds where misunderstanding, the absence of certain policies, ”Chain of Palliative Care” is a model of how Palliative students encounter dying patients, and tutorials on end traditional ethics’ influence, ignorance of the media, Care may be integrated in the health services and the of life care. All assessment is related to the style and concealing diseases to the family, bias of the oncology public. The ”public knowledge approach” is a new content of teaching and includes written questions and doctors to palliative care; other is to accept the reasons, concept for implementation of Palliative Care in the Observed Structured Clinical Examinations (OSCEs). A including: active acceptance and passive acceptance. public and to enhance knowledge about Palliative Care final year OSCE asks the student to demonstrate Conclusion: Although there are a huge crowd with for all health care professionals and the public. A short confirmation of death on a simulated patient and advanced cancer in China, palliative care which was introduction course in ”Last Aid” implemented in the explanation to the distressed daughter. carried out lately is a relatively weak subject with public school education and offered for all interested We questioned the 2005 graduates on their imbalance in development, mainly due to lack of people could probably be a part of the public preparedness for internship, as they graduated and at awareness of the people, together with the social, knowledge approach to bring Palliative Care into the completion of the year. We found that initially 37.9% policy, media, family members of patients, ethics, society. These concepts may prove helpful in spreading felt competent to tell a patient they had a terminal doctors and other reasons. Advanced cancer education basic knowledge in and attitude towards Palliative Care illness whereas 54.2% could do this a year later, while and palliative care ideation should be spread to doctors across society. 52.1% considered they could provide medical care to and patients. However, with the gradual development dying patients at graduation and 61.3% as interns. of palliative care, some people have started to accept it. Along with its human services and social recognition, PE 1.F97 palliative care will be further developed in China. PE 1.F99 A six-step approach to education in palliative care for ALL Psychosocial skills in palliative care PE 1.F101

Bollig G1 Beech N1, Lansdell J2, Norman K3, Mahoney M2 Sustainability of train the trainer education in 1Bergen Red Cross Nursing Home, Bergen, Norway 1St Catherine’s Hospice, Crawley, United Kingdom, 2St palliative care Catherine’s Hospice, Education and Training, Crawley, Aim: To adapt and improve the common three levels of United Kingdom, 3St Catherine’s Hospice, Support Fittkau-Toennesmann B H A1 knowledge in Palliative Care for physicians, nurses and Services, Crawley, United Kingdom 1Ludwig-Maximillians-Universität Muenchen, other professionals in the field of Palliative Care as Christophorus Akademie im Interdisziplinären described by the European Association for Palliative Background: An education needs assessment of staff Zentrum für Palliativmedizin des Klinikums der Care1,2 (EAPC) and the Schweizerische Gesellschaft für working at the hospice identified psychosocial care as Universität, Muenchen, Germany Palliative Medizin, Pflege und Begleitung3 (SGPMB) to an area of high priority. Staff cited a lack of knowledge a approach of knowledge acquisition for everybody. and understanding of the key principles, resulting in Question: Does a Train the Trainer Course induce This approach should include all professionals working low confidence in this aspect of care. enduring change and increase of palliative care- in Palliative Care and all interested laypersons. Aim: To develop staff who can provide effective teaching competence in university lecturers? Methods: A search was conducted in databases for psychosocial care to patients at the end of life through Background: An international group of experienced scientific journals (e.g. Pubmed/Medline, CINAHL), the the development of a psychosocial training palliative care educators offered two train the trainer Internet and reference lists of books and articles. programme. courses in palliative care for 100 university lecturers in Relevant guidelines, curricula and recommendations Method: The project followed the MRC framework for 2006 and 2008, each course with a length of 8 days, a were reviewed. evaluation of complex interventions: faculty of 14 and 50 participants. Results: Recent concepts, curricula and educational Phase I: In depth interviews with terminally ill patients The training combines content, methods and teaching efforts in Palliative Care are mostly based on education and health professionals to elicit their views and reflection. Participants switch from learner role into within one profession, multidisciplinary education is experiences regarding psychosocial care; teaching role and vice versa. recommended, but is rare to find. Three levels of Phase II: Development and delivery of a three day Method: Selfassessment Questionaire before, directly competence have been described by Palliative Care training programme. afterwards and 6 months after the training organisations as the EAPC and the SGPMB. Ten health professionals participated in one study day interrogating palliative care competencies, attitude Conclusion: A six-step approach to education in per month for three months. Participants completed: versus caring for patients and their relatives and change Palliative Care for ALL is suggested. This approach knowledge questionnaires pre and post each study day; of competence to educate palliative care with methods includes education for the public as basic step. One an audio-taped patient interaction after day two; an taught in the train the trainer course. important feature is the demand for multidisciplinary observed audio-taped patient interaction after day Results: 70% of the participants returned the three education for all professionals involved in Palliative three; a reflective diary throughout the programme; a questionnaire. First results show changes in educational Care. Palliative Care organisations and others working confidence questionnaire pre and post the programme. activities: practicability of content and methods, with education in this field should discuss and consider Qualitative data was subject to thematic analysis. development of new teaching lessons, lecutures and this approach. Results: Analysis of the knowledge questionnaires seminars. The data interpretation -still in progress - will Literature: indicated participants had a more detailed be presented. 1. European Association for Palliative Care (1993): understanding of the concepts relating to psychosocial Conclusion: Programms combining content, methods Report and recommendations of a workshop on care. Participants felt the use of reflective diaries, audio- and teaching reflection can enhance teaching activities palliative medicine education and training for doctors tapes and observation enabled them to critique their and encourage implementing palliative care education in Europe, www.eapcnet.org (01.03.2006) own practice. Confidence questionnaires showed an for undergraduate students in medical faculties. 2. European Association for Palliative Care (2004): A increase in scores for all categories. Participants said Guide for the development of Palliative Nurse their increased confidence enabled them to be more Education in Europe, www.eapcnet.org (10.06.2008) responsive to patient cues and prompts, even when the PE 1.F102 3. Schweizerische Gesellschaft für Palliative Medizin, subject area was difficult. Pflege und Begleitung (2002) Aus- und Weiterbildung Conclusion: The MRC framework facilitated the Lay Teaching - Enabling palliative care clinicians in Palliative care - Nationale Empfehlungen. development and testing of the training programme. to provide spiritual care education www.palliative.ch/de/documents.php (28.07.2008) Phase II highlights modifications required to both the programme content and duration, and also the Finnegan C1, Groves K1, Cath B1, on behalf of the Spiritual evaluation methods adopted. Further work is required Care Subgroup of the Merseyside & Cheshire Cancer PE 1.F98 to evaluate the impact on the patient experience. Network, Supportive Care Strategy Group 1Queenscourt Hospice, Southport, United Kingdom sessions Teaching medical students about death and dying PE 1.F100 Aims: The diagnosis of a life-threatening illness can

(Friday) have a profound effect on an individual and those Flynn E1 Understanding to palliative care among Chinese around them. This can lead to questions such as ‘why 1

Poster University of Melbourne, Medical Education Unit, cancer patients me’ and ‘how will I cope?’ One of the key aspects of Melbourne, Australia providing effective palliative care is ensuring that Cheng W-W1 spiritual support is provided when and where it is The medical course of the University of Melbourne 1Cancer Hospital, Fudan University, Palliative Care required. Spiritual care is the role of all those who meet provides developmentally appropriate teaching, Department, Shanghai, China these patients and not only faith leaders. As such this relevant clinical experiences and apposite assessment project examines how we can support palliative care about death and dying for students which meets their Aims: Palliative care department in Cancer Hospital, clinicians to provide effective spiritual care. needs in the intern year. Fudan University is the first palliative care division that Methods: A Spiritual Care Subgroup of Merseyside & The course is integrated, problem based, with early was set up by tertiary cancer specialist hospital in Cheshire Cancer Network, Supportive Care Strategy clinical exposure, increasing complexity of China. For little awareness of public understanding to Group has developed a study day on raising spiritual communication skills and professional development palliative care, the author did a survey from the patients care awareness for those who care for patients with (PD) teaching and a Palliative Care rotation. with advanced cancer and made a brief transcript under palliative care needs. A handbook has been designed Information about teaching sessions in the six year informed consent. Through the review and sum up, we based on this study day to enable other palliative care course comes from a curriculum database. All Problem studied understanding and practical attitudes of the clinicians to provide this education throughout the Based Learning (PBL) tutorials have learning objectives, patients to palliative care, and told patients the real cancer network. A pilot of the handbook was such as the challenges and losses that occur when death meaning of palliative care so that finally more undertaken in which physicians and clinical nurse is imminent; examples are lung cancer and miscarriage. systematic palliative care can be accepted to improve specialists hosted a spiritual care study day based on the A first year lecture on changing attitudes and practices the quality of life. handbook. Their hopes and fears were reported before to death and dying across time and space is followed by Methods: Data were collected from the patients in and after the study day. The handbook was modified lectures on ethical issues in end of life decision making palliative care department and outpatients division, based on the experience of the pilot study days. in second year. The PD teaching in the later years who were mentally clear and agreed to communicate Results: This poster describes the effectiveness of the includes theoretical and practical approaches to with no language obstacle. Typical represents to Handbook alone, in enabling palliative care clinicians breaking bad news, experiential teaching on palliative care were selected to illustrate the current to deliver the study day. confirming the death of a patient sensitively, plus reality of mind and understanding in Chinese people. Conclusion: All those providing palliative care to explaining to the family. The last related session is Results: The cognition was divided into two categories, patients at the end of life should be able to provide documentation for autopsies, certification of death and namely one can not accept the reasons, including: spiritual care appropriate to their role. To allow clinical

72 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) staff to do this effectively they require education, education in Palliative Care. Without the existence of Method: A review of learning from reflections elicited experience and confidence in their abilities. Following PCN, I wouldn´t have probably been able to pursue at regular research team meetings about challenges and the initial pilot, the Spiritual Care Handbook is to be with my palliative care career. I wish to encourage solutions to facilitate access and recruitment of rolled out to provide an educational programme others to take advantage of this network in advancing patients. throughout the Merseyside and Cheshire Cancer Palliative Care services in their areas.” Results: Experiences varied, but a number of common Network for 2009. Conclusion: PCN provides an opportunity for challenges and opportunities were identified: palliative care professionals to volunteer and help other (i) Patient reaction to sensitive issues colleagues around the world at minimal cost, as per (ii) ‘Conspiracy of silence/closed awareness’ PE 1.F103 their convenience. (iii) Issues concerning recruitment, including This project is funded by volunteers who run and ‘gatekeeping’, the ‘obligation’ to take part, and The emotional care load - Palliative care nursing maintain the site. researcher presence in the hospice environment in community settings (iv) The role of emotion and reflexivity of the researcher Fletcher S M1 PE 1.F105 (v) Peer support and formal access to therapeutic 1Monash University, Social Work, Melbourne, Australia supervision for the researcher. Palliative care for psycho geriatric patients from Conclusion: Identified solutions and strategies for This research proposes that nurses working in a physiotherapeutic view overcoming the challenges and enhancing the community settings are engaged in more intense opportunities in undertaking research with patients relationships over longer periods of time with their Hollander L F H1, Dielis W P1 who have advanced cancer within a hospice/palliative clients. In these new nurse-client relationships the 1Saxion University of Applied Sciences, School of day care setting will be shared. nurses need enhanced competencies and a new model Health, Enschede, Netherlands of supportive supervision. This study used an exploratory qualitative design, Aim: Physiotherapy (PT) aims to “optimise the PE 1.F107 combining a program-like evaluation and a thematic patient’s level of physical function and takes into approach The program -like evaluation was used to consideration the interplay between the physical, The age of sophisticated educational browsing: assess the outcomes of a non-managerial model of psychological, social and vocational domains of Google Scholar vs Pubmed supervision and the themes evolved from the issues function. The physiotherapist understands the patients raised by the nurses.The participants were eight underlying pathological condition, but this is not the Condon L1, Boland J1, Cachia E1, Ahmedzai S H1 registered and practising nurses. The sample included focus of treatment. The focus of physiotherapy 1University of Sheffield, Academic Unit of Supportive one male and seven female nurses working across a intervention is, instead, the physical and functional Care, Sheffield, United Kingdom variety of community settings. sequelae of the disease and/or its treatment.” (Fulton The nurses agreed to take part in a supervision and Else, 1997). Background: With between 13,000 and 25,000 program, consisting of six one-hour sessions conducted The focus is on facilitation of movement. Often this scholarly journals estimated to be available online, the on a monthly basis for a six-month period. facilitation is understood as activation, exercise and internet provides a wealth of information to both The interviews took place within the supervision training. This focus might confront with the ideas of clinicians and medical students. Finding useful, sessions where the supervisor/researcher responded to Palliative Care, so it is important to explicit the relevant publications efficiently requires a robust tool. the client issues that the nurses brought in for alternatives in PT, with regard to Palliative Care. The Objectives: discussion. best place to this is in PT education through research Part 1: To identify to what extent Pubmed and Google Findings from the analysis are presented in two parts. projects (Case Studies) performed by students. Scholar are used by medical students. The first part reported findings from the program-like Design: In Case Studies is shown how the focus of PT Part 2: To compare the results produced by the two evaluation. The evaluations revealed that nurses´ (in a interdisciplinary perspective) fits harmoniously in search engines in a variety of searches. perceptions of their overall competence and confidence Palliative Care. The central hypothesis of the studies is: Methods: increased. Their competence levels were measured Facilitation of Movement in Treatment of Psycho Part 1: An online survey was available to 1184 students within four domains, self-regulated learning, self- Geriatric Patients; the Alternative Way. and was completed anonymously. awareness and development, skill competence and Results: Part 2: 5 searches with a palliative and supportive care strategies for psychosocial intervention. The second 1. Use of a vacuum cleaner in order to facilitate walking, theme were performed and 737 results were analysed. part of the analysis comprised developing themes from bending, stretching. Results: the issues raised by the nurses. Four themes were 2. Stimulation of movement leading to diminishing the Part 1: 387 students responded to the survey. Both identified: dose of psycho pharmacy. Pubmed and Google Scholar were used to a similar 1. Conflicting demands 3. Paradox between fixation (prevention of falling) and extent by medical students. 2. Containment Strategies freedom (autonomy) of movement. Part 2: Pubmed returned less citations but found less 3. The Emotional load and its impact on the nurse Conclusion: Current thoughts in healthcare are ‘false hits’ than Google Scholar. Google Scholar was 4. The nurses experience of the supervision sessions. focussed on Comfort instead of Psychosocial factors*. able to find free full-text versions of useful articles that These results demonstrate the complexity of issues that Comfort rules and regulation are about safety Pubmed did not and also provided links to potentially need ongoing professional development and point to a (prevention of falling by fixation), medical (pharmacy) useful ‘grey-literature’. model of supervision that can provide the space fro and physical care (food and weight rules). The Conclusion: Over half of the medical students who both education and support. Stimulation (movement, touch, music) can be included responded to the survey used one or both of Pubmed until the last phase of care. PT is indispensable for and Google Scholar to search for medical literature. ‘stimulation’ of touch and movement. In education This will undoubtedly contribute to their learning as PE 1.F104 programmes this PT approach is taught by research qualified doctors. Pubmed is able to transform a simple projects. query box entry into a sophisticated search, and its High tech volunteering in palliative care * Lindenberg: overall feeling of wellbeing (quality of methods are transparent. Google Scholar is able to find live): Affection, Behavioural confirmation, Status, peer-reviewed and useful ‘grey’ literature that Pubmed Bharadwaj P1, Sheikh A2, Alam U A T3 Comfort and Stimulation. does not and so is a useful adjunct to a Pubmed search. 1Cedars-Sinai Medical Center, Los Angeles, United We recommend that the different methods of States, 2Palliative Care Network, New Jersey, United searching and advantages and disadvantages of each States, 3Park Surgery & James Paget NHS Trust, Great PE 1.F106 should be taught at medical school. Yarmouth, United Kingdom Funding provided by the local university. Learning from challenges and opportunities in Aim: To provide a platform using widely available the recruitment of patients with advanced sessions internet technology for palliative care professionals to cancer within a hospice/palliative day care PE 1.F108 teach, interact, and exchange ideas with fellow setting (Friday) colleagues in places around the world where the Teach the teachers: Implementation of palliative 1 2 1 3 2

knowledge gap is wider than the technology gap. Lynch T J , Lloyd-Williams M , Payne S , Reeve J , Keogh C , care in long term care for the elderly Poster Methods: Palliative Care Network (PCN) is a volunteer Barbarachild Z1, Williams C2 initiated project. It’s website 1Lancaster University, International Observatory on End Husebo S B1, Abrahamsen J F1, Aamdal T1, Husebo B S2 (www.palliativecarenetwork.com) was created in June of Life Care, Lancaster, United Kingdom, 2University of 1Dignity-Center, Red Cross Nursing Home, Bergen, 2007. The project evolved from a successful long Liverpool, Academic Palliative and Supportive Care Norway, 2University of Bergen, Public Health and distance mentoring project between a physician in Los Studies Group, Liverpool, United Kingdom, 3University Primary Health Care, Bergen, Norway Angeles, USA and Mumbai, India. of Manchester, Manchester, United Kingdom PCN´s directory gives palliative care professionals Aim: A small minority, in Europe 2 - 5%, of severe ill worldwide access to colleagues for providing Background: We are currently actively recruiting and dying elderly patients are met with competence in educational support. Palliative care specialists submit approximately 420 patients from hospice/palliative day palliative care. The vast majority of dying elderly and their contact information to this website. Once the care units in the North West region of England as part their relatives will not receive proper: pain relief, information is posted in the directory, the participants of a large multi-centre quantitative study to determine preparing communication, skills in ethical decision are then encouraged to reach out to others in the the prevalence, aetiology, and natural history of making, psychosocial and spiritual care in the patient’s directory with whom they may want to communicate depression and demoralization in patients with final days and hours. Our aim was to develop and test a or to whom they can be of service. Guests visiting this advanced cancer. There is extensive collective model for implementation of palliative care towards website who would like educational support must experience of all aspects of recruitment for palliative frail elderly persons in their home or in long-term-care search the directory for a suitable match and then research within the research team. Nonetheless, we facilities. establish contact. have experienced considerable practical challenges and Method: A curriculum and a teaching program were Results: To date, seven successful partnerships opportunities in recruiting for this study, and as a result developed with main content: 2-4 members of caring amongst various palliative care professionals form have identified important lessons for future research in staff from home care or nursing homes in Norway different parts of the world have been reported. Impact this area. attended 4 seminars for 3 days over 1 year. We start 2 of the project is reflected by the feedback from Dalitso Aim: To identify challenges and opportunities relating programs each year. Staff receive basic and detailed Mzinganjira, “ I am a nurse from Malawi. I would like to to the recruitment of patients with advanced cancer to lectures in palliative care for the elderly. Extended thank Dr. Zipporah Ali and Stephanie Reynolds, both of a research study, and gaining access/collecting data presentation-, curricula- and publication-materials were whom I contacted via Palliative Care Network, for within a hospice/palliative day care setting; and handed out. The participants had to commit providing me education and information to pursue my highlight lessons for future research. themselves to train and make their own presentations

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 73 Poster sessions (Friday)

under supervision, and to plan and establish their own identified through consultation. Each provider was end of life care. local teaching program on these topics after having emailed a questionnaire seeking demographic details, Aim: fulfilled teaching program. The local places of the subject content, learning outcomes, methods of • To equip professional carers with the knowledge and participants receive a kick-off local seminar with assessment, target audience, accrediting bodies, skills required to deliver equitable, quality care for lectures from a member of our team in the following academic level, duration, fees, awards, and dates of each patients at the end of life within their own homes. months. palliative care CPE activity they provided or planned to • An introduction to palliative care, an understanding Results: 2 groups with 47 participants fulfilled the provide in 2008. Data were analysed using SPSS of end of life issues and promote confidence in educational program. Hardly any of them had Statistics 17.0. managing a crisis. experience or skills in teaching or presentations. All Results: A 57.69% response rate to the email was • To identify the roles and responsibilities of their role. developed local projects for their own municipality or obtained (n=75) and 41.33% (n = 31) reported the • The opportunity to network with other colleagues nursing home. Until now we visited 9 of their home survey was not applicable to their organisation or and their local specialist palliative care team. areas, where local kick-off seminars were arranged, service. Completed questionnaires were returned by 44 Method: Interviews were undertaken with care agency totally with more than 2100 participants. The program providers. Six questionnaires were discarded as managers to ascertain the perceived educational needs is over-booked for the next years. We plan to publish incomplete or not applicable. Data were collected from of carers. The results were used to develop a one day the concept and results internationally in the following 38 providers, based in 13 of the 26 counties of the foundation course. Three courses were held in six year. Republic of Ireland. In total, data were generated on 162 months, all were evaluated at the end and a telephone Conclusion: The multiplicator benefit of a teach-the- formal and informal palliative care CPE activities. Of interview was held with a random sample of attendees teachers program: Palliative Care for Elderly Persons, is these, specialist palliative care (56.8%) which includes six months after the course. overwhelming, and the need for these programs are hospices was the most frequently cited provider of CPE. Results: 58 carers from eight local agencies attended imminent. Main topics included bereavement (12.1%), three courses, which included: communicating around dying (11%), symptom • Introduction / philosophy of palliative care management (10.3%) and psycho-social issues (9.7%). • How to manage a crisis - recognising symptoms using PE 1.F109 Conclusion: There is a broad range of palliative care case studies CPE which would appear to slightly favour the psycho- • End of Life - diagnosis of dying/managing symptoms Targeted competencies for palliative medicine social dimension over symptom management. More / promoting comfort speciality? information is required on detailed curricula, course • Using equipment content and learning outcomes. Based on this study, an • Basic communication skills - communicating with Denis-Delpierre N1, Marcoux I2, Barrier J H3, Mallet D4, internet database to provide an all-Ireland semi-comatose patients / families Colombat P5, Burucoa B6, Dabouis G7 informational portal on palliative care education is • Spirituality 1CHU de Nantes, Palliative Care Unit, Nantes, France, planned for 2009. This study was funded by the Irish • Caring for yourself. 2Equipe de Recherches en SHS Appliquées à la Hospice Foundation. The courses were all well evaluated. At follow up, Cancérologie, Nantes, France, 3CHU de Nantes, Internal interviewees valued an understanding of the dying Medecine, Nantes, France, 4CH de Luynes, Palliative process and improved confidence in communicating Care Unit, Luynes, France, 5CHU de Tours, Palliative PE 1.F111 with the patient, family and other professionals about Care Mobile Team, Tours, France, 6CHU de Bordeaux, end of life issues. All expressed a wish for further Palliative Care Unit, Bordeaux, France, 7CHU de Nantes, Expanding non-malignant palliative care education. Oncology, Nantes, France services in an Irish hospice: A multidisciplinary Conclusion: These results confirm that this novel educational needs analysis education programme can affect practice, thus Aims: Deficiencies in care for the dying have been well improving end of life care for patients at home, who documented in the literature. Medical students and Hayden D1, Ui Dhuibhir P1 require professional carer support. interns describe themselves as unprepared to care for 1Our Lady’s Hospice Limited, Education & Research dying patients. To address this issue, a training of 2 Centre, Dublin, Ireland years will be proposed to French medical students, but PE 1.F113 to adequately address medical students needs’ in end- Aim: To ascertain palliative care staffs’ perceived of-life care we need to identify: What competencies are educational and training needs in relation to expanding Addressing suffering through effective required? What tools should we use to improve our palliative care services to people with non-malignant collaborative teamwork: Innovations in on-line medical training? conditions in a Dublin Hospice, in order to inform learning Methods: Two focus groups were formed, with future educational programme developments, thereby respectively sixth grade medical students (n = 10) and promoting successful expansion of current palliative Brajtman S1, Hall P G2, Weaver L3, Willett T4, Barnes P5 national palliative medicine teachers (n = 20). care services. 1University of Ottawa, School of Nursing, Faculty of Qualitative content analysis of these groups reflections’ Methods: An educational needs analysis was Health Sciences, Ottawa, Canada, 2Bruyere Continuing was performed. conducted. An 11 item questionnaire was circulated to Care, University of Ottawa, Division of Palliative Results: Medical students identified 5 competencies to all (n=145) palliative care clinical staff working in a Medicine, Ottawa, Canada, 3Bruyere Continuing Care, develop: interpersonal competency (e.g. leading Dublin hospice. Following SPSS 17.0 and Palliative Care, Ottawa, Canada, 4CRI Critical Care communication skills), management of social issues, thematic analysis, a multi-disciplinary focus group was Education Network, Curriculum Development and specific symptoms management, teamwork, and conducted to gain richer insight. Research Initiatives, Ottawa, Canada, 5Saint Paul introspection. Our results confirm what is found in the Results: A questionnaire response rate of 40% University, Human Sciences, Ottawa, Canada literature, with the exception of emotional and spiritual represented all disciplines. 41% of respondents reported issues which were not mentioned as important current education needs were not being met. 71% Aim: Interprofessional education (IPE) is a response to domains. They indicate that clinical rotations are the considered that caring for patients with non-malignant the need for more effective, collaborative, person- best way to learn these competencies, and underline conditions requires additional education and training. centred teamwork. Implementation challenges for IPE also the educational benefits of role-plays. In return, Disease specific educational needs (e.g. dementia, renal, include scheduling common learning times across teachers reported 4 distinct competencies labelled as cardiac, respiratory disease, neurological) focused on curricula and designing programs to meet needs of the technico-scientific, interpersonal, ethical, and ability to treatments, trajectories, prognostication, symptom different learners. This project explored the use of an collaborate with other health professionals. They management, pharmacology, ethical issues, patient and on-line learning module, combining independent and mentioned clinical exposure as the best way to learn family support, and integrating care with other group learning activities to address common and end of life care, mobilisation and feedback from tutors, specialities. 62.5% expressed concerns about people profession-specific learning objectives. and written reflections in a portfolio structure as with non-malignant conditions engaging in palliative Methods: The dynamic, facilitated module uses a important educational tools. care services, such as lack of resources, expertise, patient narrative, developed by students, to portray a sessions Conclusion: Major competencies in palliative knowledge, funding and preparation, challenges with patient experiencing a complex combination of medicine identified in this study have been already prognostication, and dilution of current service. 52% physical, psychosocial and spiritual issues (“suffering”).

(Friday) described as relevant competencies for all medicine identified barriers to meeting these education needs Learners choose a unique navigation strategy. No one practitioners. However, daily practice in palliative care such as lack of time, limited funding, inequitable study learner can navigate the whole story, so they must share

Poster involves specific “types of situations” which should be support, and inaccessibility of disease specific experts to their understandings to develop a collaborative care addressed in a specialized training. Description of these deliver educational programmes. plan. With ethics approval, volunteers were recruited to “types of situations” is a prerequisite for effective Conclusion: Experienced palliative care practitioners pilot the module. Evaluation data included pre-post planning and subsequent assessment of palliative identification of specific educational needs is responses on a validated ‘Attitudes Towards Health Care medicine training. frequently hindered by inherent apprehension Teams’ questionnaire; pre-post case study reports; a regarding expanding services. Listening to concerns is learner satisfaction questionnaire; a three-month post- imperative alongside tailoring collaborative teaching module survey. PE 1.F110 with the disease specific specialists. Results: 21 students, representing nursing, medicine, This study was funded by Our Lady’s Hospice Ltd. spiritual care and physiotherapy completed the A survey of the provision of palliative care module. Nineteen were women; 56% had experience continuing professional education in the with on-line learning; 53% had previous republic of Ireland in 2008 PE 1.F112 interprofessional experiences. High pre-module attitudes towards health care teams increased slightly. Hayden D1, Cooley C2, Palliative Care Education Taskforce Developing a novel education programme on All were highly satisfied with the learning experience. 1Our Lady’s Hospice Limited, Dublin, Ireland, 2Irish end of life care for professional carers Pre-post case studies showed learners doubled their Hospice Foundation, Dublin, Ireland identification of spiritual and physical issues and Gaffney R1, Corner H1, Alloway L1 identified the need for teamwork five-fold. Aim: A national survey of palliative care continuing 1North Hampshire Palliative Care Service, Basingstoke, Conclusion: Students increased both their professional education (CPE) activities at level 8 and United Kingdom appreciation of the need for health care teams and the below of the National Framework of Qualifications was components of suffering. undertaken in the Republic of Ireland in order to set up Background: Care is frequently procured from an internet database. independent agencies, to enable patients to die in their Methods: The full range of organisations and service own homes. This care is delivered by untrained carers providers offering palliative care CPE at generalist and and the quality is dependent on the individual specialist levels was unknown. A sample (n=130) of practitioner. Evidence suggests that care agency staff potential providers across the Republic of Ireland was have varying degrees of knowledge and experience in

74 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday)

PE 1.F114 terminally-ill patients after completion of the rotation. has found its way into the teaching curriculum. Conclusions: Though lectures improve medical Compared with 2006, we found a clear increase in the Project “developing competence in pain students’ knowledge on pain management and care for number of courses offered. Sadly, Palliative Care courses treatment of medical teams and clergymen by terminally-ill cancer patients, a longer hospice based are only mandatory in 6 out of 36 universities, and thus transfer of Polish professional experience into rotation may be an effective model for facilitating reach only a small percentage of medical students. Ukraine” learning about how to approach the patient with a Facultative courses exist in all the universities but very terminal illness. highly in form and contents and in many courses only Mardofel A1, Cialkowska-Rysz A2 partial aspects of Palliative Care are represented. 1Lodz Hospice Association, Lodz, Poland, 2Medical Conclusion: Our register of the current state of University of Lodz, Palliative Medicine Unit, Oncology PE 1.F116 undergraduate medical teaching in Palliative Care in Department, Lodz, Poland Germany can be (and is) used for further establishment Basis for the development of educational of teaching structures by professors and by students in Introduction: There are 13 medical centres providing curricula regarding rehabilitation in palliative medical faculties. The Working Group on Palliative stationary palliative care in Ukraine, however, home care Care of the GEMSA recommends the inclusion of care is not provided and there are no pain treatment Palliative Care as a mandatory subject in the German outpatient clinics. Among painkillers representing the Daud M L1, Pérez M1, Jorge M1, Caglio M1, Tripodoro V1, curriculum of medical education. second group of analgetics tramadol is available, as far Figueredo E1, Grance G1, D’Urbano E1, Dulitzky S1, as the third group is concerned it is morphine in Eisenchlas J1, De Simone G1, Newell Jones K2 ampoules. However, strong opioids are not available for 1Pallium Latinoamerica, Buenos Aires, Argentina, 2Sir PE 1.F118 home patients. A fear of drug addiction is not only the Michael Sobell House, Oxford, United Kingdom most serious social and mental, but most of all legal Are before-after studies appropriate to barrier. Cancer impacts on patients’ quality of life. However, determine the effectiveness of physicians’ Aim: Assessment of options of pain treatment, issues such as rehabilitation(R) in Palliative Care(PC) training in palliative care? identification of barriers. are poorly explored. Education in PC focuses on Methods: impairment, with emphasis on symptom control and Ewald H1, Kimmig B N1 1. Establishing cooperation with palliative care psychosocial and spiritual support. R is hardly 1University Hospital of Schleswig-Holstein, Clinic for organization in Ukraine; advocated as a basic teaching objective. International Radiotherapy (Radiooncology), Kiel, Germany 2. Acquiring a source of financing - a grant of the PLATO Project (Palliative Care Learning Together) Polish-American Freedom Foundation for: proposes to enhance R in practice through Aims and objectives: End-of-life care is still a • Organization of internships in pain treatment in strengthening this topic in the educational curricula developing part of medicine, and there is a special need palliative medicine centre in Lodz (Newell-Jones, K.) Within this framework, this research for the education of residents and other physicians • Organization of 2-day training courses in 2 Ukrainian intended to build up the basis for integrating R in including those with special certifications who have no cities - Lvov and Ivano-Frankivsk health professionals(HP)’ education. experience in palliative care. • Joint work with the Ukrainian partner on assessing Objectives: Therefore, different training models have been the condition and identifying problems related to 1) Agree on a common definition of disability(D) and R developed during the last years to improve physicians’ tumour pain treatment. in PC, according to current literature and experts’ knowledge and skills regarding end-of-life care, and Results and conclusions: opinion. before-after-studies have been undertaken to evaluate 1. Medical staff may recognize problems related to pain 2) Explore concepts of D and R in PC from the the effectiveness of these educational sessions. Our aim treatment and palliative care, they are interested in perspective of advanced cancer patients(ACP), relatives was to evaluate the appropriateness of before-after developing their knowledge and skills in this filed and HP. A non systematic revision related to R in PC studies and their special methods to evaluate the 2. The way to improve the condition of tumour pain setting was carried out. effectiveness of physicians’ palliative care training. treatment in Ukraine is to: Data: Databases Medline/Cochrane. Seminal PC Methods: We did a medline search to identifiy before- • Introduce amendments to legal regulations textbooks and articles, reference lists of seminal after-studies within this field (search words: palliative concerning painkillers application: increase an access publications, local legislation. Research-team meetings care, hospice, training, education, physician, nursing to opioids, introduce oral morphine, provide access to were accomplished to define the concepts of D and R home) using the function “related articles“ where morphine at pharmacies and patients’ homes; for adult ACP in PC. In-depth interviews to 5 ACP and appropriate. Data of training settings, outcome • Organize training courses for staff working at carers were undertaken. 2 Focus Group Discussions measures and reported results were extracted and hospices and staff employed in other specialization (FGD) were conducted among HP. compared. fields: internal medicine specialists, general Data analysis: Interviews and FGD were recorded, Results: Three studies with a before-after design were practitioners, oncologists, social welfare employees; transcribed verbatim and double checked. Data were identified: two measured the outcome of a physician’s • Develop a network of outpatient clinics specializing appraised by 2 independent researchers, building training by employing self-assessment methods, and in tumour pain treatment; consensus after qualitative analysis. If no consensus only one looked for effects on the patient’s comfort, • Change social stereotypes. reached, a third researcher intervened. We agreed although these data were drawn from routine records. If Whiteneck and Holicky’s “Expanded Model of knowledge tests were done, a highly significant short Disablement” provided us with a theoretical term improvement of a physician’s knowledge could be PE 1.F115 foundation for D in ACP. We achieved a definition of R, shown, but no long term results were provided. The reaching face and consensus validity. Emerging topics study which looked at the patients’ level evaluated a Effect of palliative care teaching and community were identified from ACP and Caregivers’ Interviews time interval of 6 months after the training session and hospice visit on medical students´ knowledge and FGD’ analysis. This study brought in clarifying found highly significant improvements in pain and and attitudes toward care of terminally ill concepts and triggered questions related to R in ACP. symptom control as well as in dyspnea and in several cancer patients Further research is needed to elaborate evidence-based other features of pre- and post- intervention data which recommendations underpinning education addressing were compared. Manalo M F C1 this issue in PC. Conclusions: There is a strong need for studies which 1Far Eastern University-Nicanor Reyes Medical measure the effectiveness of a physician’s training in Foundation, Community and Family Medicine, palliative care by prospectively looking for changes in Quezon City, Philippines PE 1.F117 patients´ comfort. To evaluate the sustainability of training effects, long term measurements need to be Introduction: A majority of medical students feel Development of teachings in palliative care for done in addition. uncomfortable with terminally ill cancer patients. medical students in Germany Increasing attention in medical education is being paid sessions to end-of-life care. Since 1997, under the Department of Dietz I1, Pollkläsener I2, Laske A3 PE 1.F119

Community and Family Medicine, Far Eastern 1Technical University Munich, München, Germany, (Friday) University-Nicanor Reyes Medical Foundation has 2Witten/Herdecke University, Witten, Germany, 3Ernst- Undergraduate education program - Do we need

provided lectures on hospice and palliative care to first Moritz-Arndt-University Greifswald, Greifswald, to work it out? Poster year medical students. Starting academic year 2008, a Germany mandatory 16 hour lecture for fourth-year medical Kotlinska-Lemieszek A1 students on pain management and principles of Aim: In Germany, the development of undergraduate 1Poznan University of Medical Sciences, Poznan, Poland palliative care and a one-day visit at a community Palliative Care teaching is a slow process, as is the hospice was implemented during their community and discussion about inclusion of Palliative Care teaching as Introduction: Despite the development of Palliative family medicine rotation. a mandatory subject in the curriculum of medical Care in European countries we still lack consensus on Aim of investigation: To determine the effectiveness education. The aim of the present study was to collect unified program of undergraduate training for medical of intensive lectures and a community-based hospice present data on Palliative Care teaching at German students and nurses. What is more symptomatic visit in changing palliative medicine attitudes, medical schools to create a basis for further discussion. palliative care is still not present in the curricula of knowledge and skills among fourth-year medical Methods: The Working Group on Palliative Care of the medical studies on many European universities. The students. German Medical Students’ Association (GEMSA) sent a growing number of patients requiring palliative care in Methods: Pre- and post-test questionnaires standardized questionnaire to all deans of studies of the the aging European society indicate the urgent need for incorporating self-assessment of knowledge, attitudes 36 German faculties for medicine. All information recognition of the problem. and skills toward care of terminally-ill patients are gathered was compared with information collected two The goal of the paper is to present the program of administered to fourth-year medical students before years ago by the working group in the same way. The undergraduate education at Poznan University of and after completion of their community and family questionnaire dealt with the following items: Medical Science. clerkship rotation. 1. Type of teaching course, The programme was introduced in 1990/1991 thanks to Results: In general, prior to their rotation, students 2. Organisation, the initiative of profesor Jacek ?uczak and has been report a deficit in their knowledge of pain management 3. Other courses with similar contents, developed within years to 53 hrs of seminars, and ability to perform palliative medicine tasks. 4. Presence of a palliative care unit in the university workshops and practice at the bedside that students Students reported improvements in the items hospital/teaching hospital, attend on the 5th and 6th year of the medical studies. measuring knowledge of cancer pain management after 5. Possibility of spending part of the last year of medical The syllabus includes: completion of the rotation. However, they continue to education in a palliative care unit, • introduction of palliative and hospice care, the lack confidence in performing palliative medicine tasks 6. Notes. philosophy and goals and to report discomfiture in interacting with Results: In all German medical faculties Palliative Care • history of palliative care in the world and in Poland

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 75 Poster sessions (Friday)

• organisation of palliative care proactive vision was the working goal of two Social examine participants’ perceptions and experiences of • ethical dilemmas at the end of life with special Work Summits on End-of-Life and Palliative Care. A the factors impacting on their quality of life, attention to palliative sedation priority item identified at the 1st Summit in 2002 and particularly dignity and respect. Study 2 involves a • psychosocial issues and the role of psychosocial the overarching consideration of the 2nd Summit in survey measuring physical, psychological, social, and support 2005 was to create a social work coalition of experts, spiritual well-being. This paper will focus on Study 1. • communication with the patient and family institutions, organizations involved with end-of-life and Analysis and results: Data analysis was undertaken • nursing patients with the advanced diseases palliative care to promote advocacy, education, research using the constant comparative method of grounded • end-of-life care and networking. theory. This method involves the researcher identifying • epidemiology, pathophysiology, assessment, The Social Work Hospice and Palliative Care Network similar and deviant elements and grouping them pharmacotherapy of pain (SWHPN) emerged from the Social Work Leadership together around a theme for comparison. Data from the • pathophysiology and treatment of respiratory Development Awards Program,funded by the Project on interview transcripts was managed using the computer symptoms (dyspnoea, cough, haemoptysis) Death in America. In June 2007, SWHPN was officially package NVivo, which allowed a large data set to be • pathophysiology and treatment of gastrointestinal established as a nonprofit organization with 501c3 managed and ensured that a clear decision trail was symptoms (nausea and vomiting, gastrointestinal status, a board of directors, and elected officers. SWHPN authenticated from the data. obstruction, constipation) now has a large subscriber base for public website Results define the meaning of dignity for an older Irish • anorexia/cachexia syndrome- pathomechanism and updates and growing membership base in its private population, and portray incidents which have effected treatment online community. It’s initial goals were to build the participants’ sense of dignity, impacting on their • nutrition in palliative care consensus within the profession, create intra- quality of life. • psychiatric issues (delirium, depresssion) professional and interprofessional partnerships, Conclusions: Interventions are highlighted which • emergencies in palliative care develop a social work specific knowledge and skill base seek to maintain dignity, an essential component of • lymphoedema, fungoid tumors, chronic wounds and within end-of-life and palliative care, disseminate quality of life for older people in palliative and pressure sores. information to the social work community at large extended care facilities. The comprehensive system of education in holistic (national and international), and across professions, palliative care for patients with cancer and other collaboration on program initiatives and resource incurable diseases is awaited. Poznan experience may sharing, and ultimately further development of PE 1.F124 serve as an example to be taken for further capacity and advancement of the field. The results of an consideration. ongoing needs assessment survey of Social Workers Improving the experience of dying patients: practicing in this area supported by the Academy of Evidence from 10,000 deaths in Wales Hospice and Palliative Medicine will be reported. PE 1.F120 Johnstone R P1, Fowell A1, Finlay I2 1North West Wales NHS Trust, Palliative Care, Multiprofissional learning and teaching in PE 1.F122 Caernarfon, United Kingdom, 2Velindre Hospital, palliative care Palliative Medicine, Cardiff, United Kingdom ‘Birds of pray!’ - A religious needs resource Barbosa A1, Guerreiro V1, Neto I G1 The implementation of an Integrated Care Pathway 1Lisbon School of Medicine, Palliative Care Groves K E1, Baldry C R1, Saltmarsh P1, Valentine Gray D1, (ICP) for the last days of life across Wales has resulted in Unit/Bioethics Centre, Lisboa, Portugal O’Driscoll S M1, Ellams G1 the centralised collection of over 10,000 patient 1Merseyside & Cheshire Cancer Network Spiritual Care variance sheets resulting from the delivery of end of life Aim: Interdisciplinary team work is the main issue to Subgroup, Merseyside, United Kingdom care through the ICP in various care settings. The ICP is provide holistic palliative care by coordinating the based on evidence and best accepted practice in the contribution of different professional disciplines. An Background: In response to the NICE Supportive and absence of evidence. ICP variance sheets record important issue for this purpose is that all health Palliative Care Guidance UK 2004 Merseyside and instances where care has differed, or varied from the professionals involved in a team must share common Cheshire Cancer Network convened a Spiritual Care expected goals and also provides evidence of delivering knowledge besides each specific training. Our academic Subgroup to review the recommendations of Chapter 7, quality end of life care. Analysis of the reported palliative care unit developed in the last five years two Spiritual Care. This group conducted a baseline spiritual variances indicates that pain, agitation and excess pedagogical strategies with a set of similar subjects care audit across Merseyside and Cheshire Cancer respiratory secretions or rattle are consistently difficult organized with the same structure: a conventional face- Network, looking at the assessment of spiritual and symptoms when managing care of the dying patient. to-face master course (12 months) and a blended religious needs and the provision of spiritual and Tracking these symptoms over time we showed a learning post-graduate intensive course (3 months). religious care. The results of this have been reported sustained improvement from 50% decreasing to 28% of Our teaching strategies in palliative care integrate elsewhere. As part of the same audit health patients with persistent symptoms of pain, agitation always in the courses different health professions with professionals were asked about their confidence in and excess respiratory secretions. natural predominance of doctors and nurses both from providing spiritual and religious care and their Although the ICP variance analysis shows improvement hospital and community health centres. educational needs. The results showed that the majority 67% of patients achieved the goals of being ‘pain-free’, Our aim is to evaluate the levels of cognitive knowledge of health professionals recognised their own lack of ‘not agitated’ and ‘no rattling secretions’ these at the beginning and at the end of these two kinds of confidence and need for education and resources to symptoms remained problematic for 33% of patients pos-graduated courses in a sample including the total help them meet the spiritual and religious needs of (n=10126). This finding is despite the use of number of doctors and nurses participants in the their patients. recommended medications and working to an accepted courses. Response: In response to the results of this audit a high quality model of care. The indications for research Methodology: 210 participants from master courses number of initiatives were undertaken. This poster are for fully powered trials to identify the most effective (N= 81, 21.0% male, 39.5% doctors, 60.5% nurses, presents one of these which is a website of information interventions for the optimum management, of these 63.0% hospital settings, 30.9% community health about religious beliefs, key issues, and practical symptoms and initiate the establishment of an centre) and blended learning post-graduated courses information related to end of life care. This website evidence base to underpin guidelines in palliative care. (N= 129, 24.0% male, 43.4% doctors, 56.6% nurses, resource is freely available to all health professionals via There are known limitations for the design of trials in 31.8% hospital settings, 65.9% community health the Merseyside and Cheshire Cancer Network. The palliative care and an innovative approach is called for, centre), were assessed by expectancy questionnaire and poster describes the contents of the website resource, to identify a suitable methodology for use in trials pre and post- multiple choice test. how it has been used and the results of initial involving dying patients. Results: At the beginning of the courses there were evaluations. significant statistical differences between the total scores of doctors and nurses (t=4.20, p<0.0001) and in PE 1.F125 sessions half of the areas cognitively evaluated (14). At the end PE 1.F123 of the courses these significant statistical differences Importance of nutrition therapy for patients in

(Friday) decreased (t=2.18, p<0.03) and there no significant Examination of quality of life for older people in the terminal phase of cancer - Activities of a statistical differences in almost all areas (27). receipt of palliative care and older people in palliative care nutrition support team

Poster Conclusions: With these two kind of courses we continuing care facilities, with specific reference reached for all health professionals (doctors and nurses) to dignity and respect Higashiguchi T1 a common level of knowledge in a very significant 1Fujita Health University School of Medicine, Surgery number of areas. Faulkner J P1, Treacy P2, Fealy G2, Drennan J2 and Pallative Medicine, Mie, Japan 1University College Dublin, School of Nursing, Midwifery, and Health Systems, Dublin, Ireland, Background: Care of terminal cancer patients must PE 1.F121 2University College Dublin, Dublin, Ireland include maintenance as well as improvement of immunocompetence and wound healing ability Social work in hospice and palliative care: The Background: As the proportion of Irish people aged through appropriate nutritional management. A emerging landscape 65 years and over continues to grow over the coming palliative care nutrition support team (PC-NST) was years, it is likely that demands for health care services, established in our institution in 2003 to provide Christ G1, Blacker S2 including residential care settings will increase. optimal nutritional management for such patients. The 1Columbia University, School of Social Work, New York Aim and objectives: results achieved by this team are reported here. City, United States, 2St. Micheals Hospital, Oncology 1. To explore older people’s perceptions of factors Results: Administration, Toronto, Canada which impact on their quality of life with particular 1. Severe nutritional disorder was observed in 87.7% of emphasis given to exploring non-illness related factors, the patients on admission, and improvement was noted Social Workers in the US provide the majority of particularly dignity and respect. in 54.4%. Many patients had normal serum levels of psychosocial services in Hospice and Palliative Care. 2. To explore older people’s needs in relation to factors albumin but a low RTP level on admission; however, Their contributions in education, research, impacting on their quality of life, particularly dignity patients who showed nutritional improvement also had administration, and policy development are and respect. an improved RTP level. increasingly recognized and have become integral to 3. To explore with older people any interventions 2. The duration of “oral-intake possible” conditions the development of this emerging field yet no single which they can identify which would contribute to significantly increased from 26.8 days before organization was established to advance their their quality of life given their particular circumstances. introducing PC-NST to 53.9 days at 3-year post- perspectives. This presentation examines the state of Methods: The study has two phases; Study 1 uses a introduction. palliative and end-of-life care social work within the US qualitative grounded theory approach by 3. The survival time was significantly prolonged from and within the international community. Creating a implementing one-to-one in-depth interviews to 35.7 days before introducing PC-NST to 57.9 days at 3-

76 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) year post-introduction. of life. CHESS was piloted in 33 care homes in Leeds own home. NHS North West’s ‘Healthier Horizon’s’ 4. Glutamine-fiber-oligosaccharide (GFO) therapy for (UK) during 2007 / 08. (summary recommendations of 8 clinical pathway cancer patients on oral morphine/oxycodone was Aims: This independent evaluation aimed to ascertain groups response to the U.K. Darzi NHS Review) outlines initiated by PC-NST. The duration of “oral-intake not whether or not CHESS was effective in improving end an aim to achieve a 10% reduction in hospital deaths by possible” conditions was significantly reduced in GFO- of life care in care homes. 2012 & rapid discharge pathways for people in acute treated patients (5.6±7.1 days) compared to non-GFO- Methods: A mixed methods approach was used, care who wish to die at home, including a 2 hr target treated patients (19.0±21.1 days). The use of laxatives including a survey of all participating care home staff for ambulance transfer. was also markedly reduced associated with GFO specifically trained to undertake and organise CHESS, The North West Ambulance Service (NWAS) currently therapy. in-depth semi-structured interviews with a wide range provides transport for end of life patients moving from Conclusions: The introduction of PC-NST has led to of stakeholders, and documentary analysis of relevant one care setting to another. However transport at end of prolonged duration of “oral-intake possible” conditions material. life is provided within existing commissioning and survival time. Before introducing PC-NST, an Conclusion: CHESS appears to have had a positive agreements for Patient Transport & Emergency Services, important number of patients died of iatrogenic causes impact on end of life care for residents in participating with no specific standards in relation to end of life care. such as opportunistic infection, while after its care homes. Improved communication between homes Although within West Lancs, Southport & Formby introduction, few cancer patients have died of a non- and community health care agencies was reported, as (WL,S&F), over the last 5 years, the number of hospital cancer cause, suggesting a substantial improvement of was greater care home staff confidence and awareness deaths has reduced from 56%-48% & the number of the QOL of cancer patients. The results also suggested over end of life issues. Carers and care home staff home deaths has increased from 15%-21%, a number of that GFO therapy in opioid-treated patients may responded positively to the formalisation of end of life issues have been experienced regarding transport increase their immunocompetence, prolong duration care protocols. Areas requiring development included: booking, delays & incorrect provision, which may of “oral-intake possible” conditions, and prevent or the need to differentiate more clearly between the contribute to preventing further improvements in improve opioid-induced constipation. needs of care homes and nursing homes; the need to enabling people to move to the place of their choice at target particular homes; and difficulties in sustaining this time in their lives. Pilot project: NWAS & WL,S&F staff momentum and interest in the programme. Palliative Care Services have developed a pilot rapid PE 1.F126 Increasing numbers of people are receiving end of life transfer process & monitoring system to manage care in care homes. Chess, as a local service patients at the end of their life, who want to die at Enhancing end-of-life care in the community improvement programme with key stakeholder home or in another care setting, within an agreed engagement has the potential to improve levels of care timeframe of 2 hours, from the booking of ambulance Anderson B A1, Kralik D1 for this group. transport to the transfer being undertaken. 1Royal District Nursing Service of SA Inc, Research Unit, Results: This poster describes the project & outlines Glenside, Australia the results of the attempt to meet this target along with PE 1.F128 the challenges & obstacles along the way. The outcome Aim: To develop an evidence-base for a medication of this pilot is the substrate for developing a definitive practice in community nursing and make Quality of EOL policy in a large tertiary hospital: service for end of life care ambulance transport in the recommendations for best practice. People moving Differences among specialties North West of England. towards end-of-life often desire to die at home. Hence, community nursing organisations in South Australia Piers R1, Van Den Noortgate N1, Schrauwen W2, Benoit D3 provide home-based palliative care (PC) services to 1Ghent University Hospital, Geriatrics, Gent, Belgium, PE 1.F130 facilitate this desire. Nurses prepare single doses of 2Ghent University Hospital, Oncology and Palliative injectable medications in polypropylene syringes which Care, Gent, Belgium, 3Ghent University Hospital, Advance care planning in advanced cancer - Can are left in domestic refrigerators, for later subcutaneous Intensive Care, Gent, Belgium it be achieved? A patient preference trial of a administration by informal carers to provide immediate care planning discussion symptom relief. However, there was little evidence to Aim: Dying in the Intensive Care Unit (ICU) versus on support this practice. non-critical wards and frequency of do-not-resuscitate Jones L1, Barlow C2, Harrington J2, King M2 Method: Data sets included: qualitative enquiry with (DNR) decisions are quality indicators of a hospital end- 1Marie Curie Palliative Care Research Unit, London, 11 PC nurses and 14 informal carers and an of-life (EOL) policy. The aim of this study was to United Kingdom, 2UCL, Mental Health Sciences, investigation of the sterility, stability and potency of compare quality indicators of EOL policy between London, United Kingdom specified medications used in PC. Literature was different wards. reviewed to identify stability and potency data of these Methods: The study was performed in the Ghent Background: Patients with recurrent cancer may have medications in polypropylene syringes. When such University Hospital, a tertiary hospital of 1062 beds concerns about future needs and care. Enabling a data were not available, stability testing was with all medical and surgical disciplines present, discussion of advance care planning (ACP), as suggested commissioned. The sterility of syringe contents was including organ and bone marrow transplantation and by recent DH policy, might facilitate an increase in determined by analysis of the contents of ‘test’ syringes, major oncological surgery. First, data concerning EOL openness between patients, families and professionals. stored in a domestic refrigerator for 28 days. The clean decisions were collected in all adult patients who Aim: To determine the acceptability and feasibility of technique of a sample of community nurses was also deceased during a 12-week period in 2007 and a 16- an intervention consisting of up to 3 discussion tested. week period in 2008 and who were admitted at least 2 sessions with a trained mediator to facilitate planning Results: Interviews revealed that the practice was days on a non-ICU ward in their final hospitalisation for end-of-life care. highly valued by nurses and carers. It allowed patients (in whom it was possible to address EOL issues). Method: A patient preference randomised controlled to remain at home, surrounded by family and friends, Secondly, the frequency of DNR decisions for all trial. Cancer patients with active disease were with resultant improvement in quality of life. The patients > 16 years old admitted on non-critical wards approached in NHS oncology out patient clinics. After stability and potency data showed that the majority of were studied using a one day cross-sectional informed consent, they expressed their preference for medications were suitable to be drawn up and stored for observation. or against receiving the ACP intervention. 20 places longer than the current period of 24 hours. Testing of Results: Surgical patients were more often referred to guaranteeing ACP and 20 usual care were available in a the nurses’ clean technique and the contents of ‘test’ the ICU at the EOL in comparison to medical patients preference arm. All other participants were randomised syringes did not reveal any bacterial contamination. (12/17 (71%) versus 73/209 (35%), p<0.001) despite to the intervention or usual care. Measures at baseline Conclusion: Best practice recommendations addressed similar Charlson comorbidity score. Dying patients on and follow up (at 8 weeks) included HADS, visual on-going sterility testing, medication storage and non-critical surgical wards had a DNR option at the analogue scales to assess communication with family, disposal, and development of educational materials for time of death in only 5/9 (56%) versus 14/168 (92%) friends and clinicians, and possible completion of a nurses and carers. Project outcomes included a work patients on the medical wards (p=0.007). Similarly, a written advance directive. Qualitative data were instruction for registered nurses, an advice sheet and a DNR decision was installed in only 1% (4/485) in collected on reasons for choices and preferences. break-through medication chart for informal surgical patients compared to 23 % (187/815) in ACP discussions were audio-taped and analysed for sessions caregivers. medical patients (p<0.001) in the cross-sectional study. thematic content. They were structured to cover

A huge variability in frequency and timing of DNR previous experiences of care, current problems and (Friday) decisions and subsequent participation of patient, concerns, fears for the future, the role of close persons,

PE 1.F127 family and nurses in these decisions and in ICU and options for a written advance directive. Poster admission and length of stay in the ICU at the EOL was Results: Resistance was encountered from clinicians Improving end of life care in care homes in the also observed between medical wards. who lacked confidence to introduce the study to United Kingdom: An evaluation of the Care Conclusion: Transition from acute care to a more eligible patients. 78 participants entered the study and Homes End of Life Supportive Services palliative approach is less anticipated on surgical wards recruitment ended in August 2008. The follow up rate is programme (CHESS) compared to medical wards. There is also a huge 80%. We shall describe our study population, the variability in EOL practice between medical wards. feasibility of randomisation, recruitment rates and Chatwin J1, Payne S1, Seymour J2, Ingleton C3 attrition, and trends for change in outcome measures. 1Lancaster University, Institute of Health Research, We shall present emergent themes from qualitative Lancaster, United Kingdom, 2University of Nottingham, PE 1.F129 analysis of ACP discussions. Analysis will be complete Nottingham, United Kingdom, 3University of Sheffield, by January 2009. Sheffield, United Kingdom ‘Whistlestop tours?’ A pilot of rapid ambulance Conclusion: This study provides evidence to inform transfers at end of life the acceptability of introducing ACP discussions in end Background: Care Homes End of Life Supportive of life care. Services (CHESS) builds on a palliative care programme Groves K E1, Barnard S2 originally undertaken by Leeds Primary Care Trust as 1West Lancs, Southport & Formby Palliative Care part of the Gold Standards Framework in Care Homes Services, Palliative Medicine, Southport, Merseyside, (GSFCH) initiative. This initiative, merged with a United Kingdom, 2North West Ambulance Service, number of other developments identified via the Marie Clinical Governance, Greater Manchester, United Curie Cancer Care Delivering Choice Programme Leeds Kingdom project, was supported and developed via key stakeholders and funded by Marie Curie Cancer Care. Background: The first U.K. National End of Life CHESS is a service improvement programme which Strategy (2008) highlights the need for coordinated aims to support care homes in the delivery of quality services to provide rapid, easy access to those services palliative care, and improve the resident and family required to enable people to be cared for & to die in the experience of care delivery during the last 6-12 months place of their choice, which for the majority is their

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 77 Poster sessions (Friday)

PE 1.F131 presented including: 42 cases, in 4 cases when decision was made for • Continuity of care for community-based palliative palliative treatment. 3 patients had no relatives. Prognostication by the multidisciplinary team - care services Median time from diagnosis to death was 11 months. Are we accurate? • A rural palliative care model The patients received 0-161 units RBC per patient • Clinical guidelines for delirium (median 39), and 0-97(median 19) units of platelets per Brooks M J1, Marley K2, Jones M3, Lewis-Jones C2 • Patient’s sense of burden patient. The out-patient visits were an average of three 1Royal Liverpool University Hospital, Palliative Care, • Hospice and homelessness. times per month. The inpatient’s days ranged from 1- Liverpool, United Kingdom, 2St. John’s Hospice in Conclusion: The team has been successful in meeting 267 days, (median 65). Wirral/ Arrowe Park Hospital, Wirral, United Kingdom, the program objectives and will share plans for In 16 of 49 journals, contacts with a social worker are 3Oak Vale Medical Centre, Liverpool, United Kingdom sustainability. registered. 5 patients had contact with a supportive care Main source of funding: Canadian Institutes of nurse, 1 patient with a priest and 1 with a deacon. Background: Patients in the last few weeks of life Health Research. A mobile team nurse gave transfusions at home. She progressively deteriorate requiring increasing physical, visited 9 out of 34 patients from the university hospital, psychological, spiritual and social support. It is range 1-48 visits (median 15). 23 patients had contact therefore important to identify this patient cohort. PE 1.F133 with a primary care nurse. Aims: To determine the accuracy of the multi- Conclusions: The patient and their relatives were well professional Hospital Specialist Palliative Care Team Diagnosing dying: Exploring the process by informed. Few patients died outside hospital. Too few (HSPCT) in identifying patients with a prognosis of 6 which palliative care staff recognise the last days were offered emotional support. The mobile team and weeks or less. To provide evidence supporting of life the primary care teams could be utilized better. recommendations for advanced care planning and resource allocation for patients in the last few weeks of Latten R1, Williams E M I2, Gambles M1, Ellershaw J E1 life. 1Marie Curie Palliative Care Institute Liverpool, PE 1.F135 Method: A retrospective study of all referrals to a Liverpool, United Kingdom, 2University of Liverpool, HSPCT in North-West England from April to July 2007. Division of Public Health, Liverpool, United Kingdom Supporting end of life care in care homes: A Since May 2006 the HSPCT multidisciplinary team survey meetings (MDTM) have identified and recorded Aim: To improve understanding of how hospice staff patients’ expected 6 week survival based on the recognise & identify the dying phase, defined as the last Kumar A1, Seymour J1, Froggatt K2 statement: “I would not be surprised if this patient died few days of life. 1University of Nottingham, Sue Ryder Care Centre for within the next 6 weeks”. Background: Recognition of the dying phase is a vital Palliative and End of Life Studies, Nottingham, United Survival outcomes for these referrals were obtained process in end of life care. The Liverpool Care Pathway Kingdom, 2Lancaster University, Institute for Health from Hospital and Hospice records. The expected 6 for the dying patient exists to facilitate good quality end Research, Lancaster, United Kingdom week outcomes were compared with survival outcomes of life care, but its use relies on healthcare staff and analysed using Microsoft Excel. identifying when patients have entered the dying Aim: The delivery of end of life care in care homes Results: 318 referrals for 250 patients were received phase. This can be challenging at times, especially for depends not only on the skills of staff, but also access to during the study period. 225/318 were discussed at those less experienced in end of life care such as in support outside. This study examined what factors MDTM. 129/225 (57.3%) died within 6 weeks of MDTM acute hospital settings. Without this recognition, care influence the provision of end of life care to older discussion. 45 (20.0%) patients were identified as being of dying patients may be sub-optimal. people in English care homes registered to provide in the last 6 weeks of life at MDTM. The MDT approach Method: An ethnographic qualitative study designed nursing. using the statement “I would not be surprised…” to examine how hospice staff, experienced in end of life Methods: We designed a questionnaire for completion against actual outcomes gave the following; sensitivity care, recognise the dying phase, performed in 3 stages. by care home managers or senior clinical staff to 29.5%, specificity 92.7%, positive predictive value 1- Retrospective casenote analysis examining staff examine the support they accessed in providing end of 84.4% and negative predictive value 49.4% for documentation of the last days of life. 2- A prospective life care. The questionnaire was piloted for face validity identifying a prognosis of 6 weeks or less, with an period of observation of hospice staff during clinical and mailed to 180 care homes, spanning a rural and accuracy of 56.4%. meetings where decisions regarding diagnosis of dying urban area of northern England. The survey area Conclusion: Accurate prognostication is required to are often formulated and discussed. 3- Semi-structured surrounded two in depth case studies, to be reported improve end of life care. HSPCT referral often occurs interviews with hospice staff. separately. when the patient has far advanced disease, and Results: 25 casenotes were analysed by content Results: The response rate was 46%. Of those homes prognosis is poor. The multidisciplinary approach using analysis, totalling 175 days of entries in the 7 days which responded: 57% provided information about the statement “I would not be surprised …” identifies leading up to death. Over a 6 week period, over 13 care home size (19-180 beds) and residents’ deaths in some of these patients but many more die within this hours of clinical meetings were attended & observed. the last year (76% residents died in the care home; 77% time. This difficulty in identifying poor prognosis and Staff interviewing is progressing at present. Staff non cancer); 80% were implementing an ‘end of life late palliative care involvement affects patient care. participation levels were high, from a range of care pathway’ most commonly the Liverpool Care professions including medical, nursing, allied health, Pathway (66%); 72% had “a lot” of support from GP’s, social work & spiritual support. Results to date indicate specialist palliative care nurses and district nurses and PE 1.F132 the process of identifying the dying phase is complex & “some” support from family members and social multi-factorial. Factors considered include physical workers; 56% said that support received varied with End-of-life care for seniors: A Canadian research findings such as changes in breathing, skin tone, resident’s illness and stage. Qualitative comments team consious level, oral intake and mobility. Non-physical provide insight into barriers to care: variable and factors such as patient statements & psychological state inconsistent GP support; discriminatory attitudes; lack Allard P1, Legault F2, Brajtman S2, McPherson C2, Kelley M were also influential, along with staff feelings of of information about services/ resources/ training; poor L3, Brazil K4, Kaasalainen S4, McKee M3, Wilson K2, intuition or “gut instinct”. ‘out of hours’ cover. Respondents had clear views about Guirguis-Younger M5 Conclusion: Diagnosing dying can be challenging & is their priorities for enhancing end of life care: meeting 1Elisabeth Bruyere Research Institute, Ottawa, Canada, a complex process. Ongoing interviews will provide residents and families needs; improving the care home 2University of Ottawa, Ottawa, Canada, 3Lakehead further insight & expansion to additional units is environment; staff training and education; using end of University, Thunder Bay, Canada, 4McMaster University, planned. life pathways; networking. Hamilton, Canada, 5Saint Paul University, Ottawa, Conclusion: As acknowledged by the Department of Canada Health´s End of Life Care Strategy for England, care PE 1.F134 homes for older people are an important site for end of Aim: The End-of-Life Care for Seniors New Emerging life care. This study sheds light on what support care sessions Team (ELCS-NET) was funded in 2003 by the Canadian Palliative care in acute leukaemia in a Swedish homes need and highlights areas for improvement. Institutes of Health Research to develop and conduct an region during 2004-2005 The NHS End of Life Care Programme has funded this

(Friday) interprofessional research program to improve the study. quality of care for seniors at the end of their lives. The Garelius H K1, Stockelberg D1 1

Poster team of researchers represents medicine, nursing, social Sahlgrenska University Hospital, Section of work, psychology and epidemiology and focuses on Haematology and Coagulation, Dept. of Medicine, PE 1.F136 seven main themes: Göteborg, Sweden - end-of-life care for rural older adults; settings of care; ‘Preferred Priorities for Care’: Experiences of - sense of burden; Aims: A retrospective study of the palliative measures patients, families and practitioners in using an - role of volunteers; taken in patients who died of acute leukaemia in our advance care planning tool - delirium outcomes; region. - symptom recognition and management; and Materials and methods: Names of patients from 18 Fineberg I C1, O’Connor L1 - interprofessional education. years of age that died in our region during 2004-2005 1Lancaster University, Division of Health Research / The objectives of this team program of research with acute leukaemia were provided from our register International Observatory on End of Life Care, include: and The Swedish Death Register (SDR). Information Lancaster, United Kingdom 1) address priorities which link the fields of from the journals was registered retrospectively. gerontology and palliative care, Results: Acute leukaemia was registered as a cause of Aim: ‘Preferred Priorities for Care’ (PPC; formerly 2) mentor junior researchers and graduate students; death in 49 patients, M/F ratio 25/24. named ‘Preferred Place of Care’) is a patient-held 3) collaborate with national and international palliative Subdiagnoses were: Acute myelogenous leukaemia advance care planning document used in the UK with care researchers; (AML) 29 patients, secondary AML 14 patients, acute patients facing serious illness and end of life. Although 4) promote knowledge translation for policy, education lymphatic leukaemia (ALL) 5 patients, Chloroma 1 supported by the national End of Life Care Programme, and practice in end-of-life care. patient. Places of death: 37 patients at hospital, 5 at PPC has had little research. The aim of this study was to Methods: The team members utilized qualitative, hospice, 2 at a nursing home and 5 at home. 33 evaluate the experiences of patients, family members quantitative, and mixed methods. The research patients received an induction therapy, and 18 patients and health care professionals in using this document in program is structured to investigate the four obtained a remission.16 patients received palliative care the setting of palliative and end of life care. components of the quality of end-of-life care model by only. Methods: This study took place in the North West of Stewart et al: (1999), including Personal and Social A decision on strictly palliative care was finally taken in England where the PPC originated. We conducted semi- Environment; Structure of Care; Process of Care; and, 42 patients. In 7 cases there was no time to decide structured interviews with a purposive sample of Outcomes of Care. about palliative care. community-based and hospice-based nurses, patients Results: Highlights from selected studies will be The relatives were informed at the time of diagnosis in and family members who had utilised the PPC

78 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) document. Nurses were eligible for inclusion in the patient they were treated, whose life expectancy was care (BSC) because of intolerance to the CHT treatment. study if they had initiated a PPC document with longer than 1 week but no longer than 3 months, until We considered only advanced or metastatic disease, and someone diagnosed with cancer; patients and family the patient’s death (n=85). The questionnaire provided we excluded patients with only bone metastatic disease. members were eligible if they (or their family member) information on the patient’s symptoms, concerns, and Results: We analised data about 29 patients; primary were diagnosed with cancer. Interviews were audio- requests involving end-of-life decisions. tumor sites were: 11 lung, 7 colon, 3 kidney, 3 bladder, recorded, transcribed and qualitatively analysed using Results: Most patients suffered from cancer of the 2 brain, 3 other sites. Main metastatic sites were: 12 standard thematic analysis. Analysis was conducted by a gastro-intestinal tract or the respiratory system, 66% lung, 7 liver, 6 abdomen (other than liver), 4 brain. At multidisciplinary team of researchers to evaluate the died within two months after the initial interview. The the data collection time, 21 patients died and 8 were process and experience of PPC utilisation. prevalence of requests involving end-of-life decisions alive. 26 of 28 patients were older than 65 years. The Results: Clinicians, patients and family members who increased during the last 3 months of a patient’s life. mean survival for all patients was 427 days (14,2 have utilised the PPC document offer a broad range of The evolution of a request was especially related to an months); the mean survival for alive patients was 391 perspectives on the quality of this experience. increase in the number of severe symptoms and days (13 months). Participants provide detailed feedback on the process of concerns. Requests to forgo treatment were related to Conclusions: Data obtained by the analisys of this using the document, advantages they perceive from general weakness, while loss of dignity was a major population suggests that an approach with BSC like first having used PPC, and barriers to its use. Results reflect reason for requests to hasten death. treatment option could be suitable to answer to clinical personal, professional, organisational and cultural Especially the physical suffering blended by needs of selected patients with advanced or metastatic issues. The data offer insights relating specifically to psychosocial problems lead to request for euthanasia. neoplasia. Palliative CHT has to be used for PPC and more broadly to advance care planning. The intensity of suffering influenced significantly symptomatic patients or delaied to refractory symptoms Conclusion: People who have used the PPC document patients wish to die. appearence, if performance status is enough and there are willing and able to express their perspectives on Recommendations: The results emphasise the are chances to get symptoms regression, avoiding their experience of using this advance care planning importance of gaining insight in patients’ suffering in useless therapies and earlier impact on quality of life. tool. Their perspectives offer important insights that order to provide them meaningful assistance and to can inform the design and implementation of advance support them to cope with their hopeless suffering. care planning in palliative and end of life care. PE 1.F141

PE 1.F139 Palliative oncology care in 2009: Which? PE 1.F137 “Unbearable suffering”: The experience of Porta E1, De Luca B2, Rizzi B2, Cattaneo D2 A model of collaborative working in end of life patients with an actual request for euthanasia 1VIDAS, Milano, Italy, 2VIDAS, Hospice, Milano, Italy care for patients with a non cancer diagnosis Dees M1, Vernooij-Dassen M2, Dekkers W2, Weel van C1 Premise: Fairchild (2008) demonstrated that high dose Alsop A1 1Radboud University Nijmegen Medical Centre, Primary palliative radiation therapy (PR) improves survival rates 1Dorothy House Hospice Care, Education, Bath, United Care, Nijmegen, Netherlands, 2Radboud University in advanced lung cancer compared to low dose, much Kingdom Nijmegen Medical Centre, Scientific Institute for like palliative surgery (PS) for metastatic colorectal Quality of Healthcare, Nijmegen, Netherlands cancer (Cummins 2004) AIM To analyze therapies and Aim: There is evidence that patients with a non cancer their outcome in cancer patients with survival rates of diagnosis have similar palliative care needs to those Unbearable suffering is a necessary but unclear less than 1 year in a western European country. experienced by patients with cancer; that many do not condition in the context of a request for euthanasia or Method: The study of cancer patients treated in the receive adequate palliative care and that access to assisted suicide (EAS). Our integrative review made clear Vidas inpatient hospice, one of 3 different palliative specialist palliative care is inequitable. A project was that it is a profoundly personal perception of an actual care settings of the Vidas Palliative Care Organization designed to enhance collaborative working between or perceived impending threat to the integrity or (Milan, Italy). Period of reference: 2006-2008. Deaths community matrons and palliative care nurse continued existence of the whole person, with a occurred within 1 year of diagnosis. Clinical and specialists with the aim of ensuring that patients significant duration and a central place in the mental psycho-social conditions of the patients were analyzed, receive optimum end of life care, at the right time and life of the subject. It also made clear that further patient as well as the proposed palliative care and its outcome. by the most appropriate professional, irrespective of centered qualitative research on suffering in the context Results: Patient sample: 252, 29.6% of the total diagnosis. of a request for EAS is necessary. inpatients (850). Males: 57.5%. Average age: 74.6 years Methods: The project provided a range of educational To gain insight on an empirical basis into the concept (range 16 to 97), 46.8% were between 65 to 79 years of and networking opportunities for community matrons of unbearable suffering in situations where a request for age. Prevalent diagnosis: lung cancer 30.5%; pancreatic and nurse specialists through study days; focus groups; EAS is made from the point of view of patients. cancer 9.5%; gastric cancer 7.5%; colon cancer 6.3%. At informal meetings and joint visiting. This process of Thirty face to face in-depth interviews, using an the beginning of hospice care 49.6% had dyspnea, research and consultation informed the development interview guide, with patients with an actual request for 20.65% were cachectic, and 8.3% had vomiting, 3.8% of pathways to identify decision-making in end of life euthanasia. Analysis took place using the grounded psychomotor agitation, while 99.3% had a performance care and to clarify the role of specialist palliative care. theory of Glazer and Strauss and by aid of the computer status of 3 to 4. Survival rates after diagnosis: average The first is a palliative care pathway tracking the program Atlas. 140 days (range 20 to 365); median 119 days; 62.9% of patient’s journey when death is anticipated. The second Analysis of the interviews provided an extended list of patients survived more than 90 days (Group A), 32.2% identifies the rationale and referral criteria for specialist factors and motivations that contributed to the survived less than 90 days (Group B). Group A received: palliative care. It is supported by a diagram illustrating development of an actual request for euthanasia. palliative chemotherapy 24.5%; PR 12.2%; PS 14.2%; the levels of specialist palliative care intervention. An Themes evolving during our analysis were among hormonal/immunotherapy 0.6%. 44.5% of this group urgent care pathway reflects decision-making when others: life history, life events, personality did not have comorbility. 25.8% had no family. there is an unanticipated change in a patient’s characteristics, advance directives, physical symptoms, Conclusion: Data from Group A showed that palliative condition. psychological symptoms, complications of medical anticancer therapy was proposed for a limited number Results: Evaluation shows that the community treatment, quality of life, purpose in life, thoughts of patients with survival rates of less than 1 year. The matrons and nurse specialists have a more supportive, about ways of dying, fears, loss, hopelessness, study of Groups A/B has been completed. The analysis working relationship, with a clearer understanding and autonomy, take farewell and planning death. identified those aspects which need to be further appreciation of each other’s roles. The pathways are We found that most patients participating in this examined: when/how to integrate palliative care and perceived as a helpful guide in end of life care research made advance directives long before the palliative anticancer treatment as to prognosis; what management, although there are some limitations. diagnosed disease. Their longtime existing thoughts outcomes should be proposed so as to better respond to They have been adopted by two Primary Care Trusts as about euthanasia gradually turned into an actual the needs of patients/families. a framework for mapping end of life services and are request as result of experienced loss of all what made used within the hospice education programme. life worth living and inevitable progress of limitations sessions Conclusion: Further evaluation of the impact on and symptoms caused by their disease or situation. The PE 1.F142 patient care and the usability of the pathways is absence of any prospect of recovery all gave them a (Friday) planned. The results (available spring 2009) will be feeling of senselessness to endure or fight the situation. Facing death as part of end of life care

used to re-design the pathways and inform future Their actual request for EAS appeared to be the outcome Poster developments. of a careful decision-making process. Haraldsdottir E1 1Strathcarron Hospice, Education Department, Edinburgh, United Kingdom PE 1.F138 PE 1.F140 The phenomenon “being with” that relates to what the Requests to forgo potentially life-prolonging 29 cases of long survival cancer patients treated patient is experiencing when close to death is an treatment and to hasten death in terminally ill with exclusive best supportive care: important aspect underlying end of life care. The aim of cancer patients: A prospective study Brainstorming around palliative chemotherapy this observational study was to generate adequate description of how nurses and nursing care assistants Georges J-J1 Piazza S1, Vicario F2, Prino A1, Poletti S1, Longoni C1, do “being with” in day-to-day nursing practice within a 1Hogeschool Utrecht, Utrecht, Netherlands Alabiso O1 hospice setting as part of end of life care. Observational 1A.O.U. Maggiore della Carità, Oncology and Pallitive data was collected over an 8-month period in an Background: The most far-reaching choices patients Care, Novara, Italy, 2A.S.L NO, Algology and Palliative inpatient hospice in Scotland in 2002. are confronted with during a terminal illness are related Care, Novara, Italy In this reseach I reflect and interpret the way that to end-of-life decisions. To support terminally ill nurses and nursing care assistants constructed their care patients and to contribute to their quality of life it is Aim: In several patients, affected by cancer in advanced for dying patients. I came to understand that the nurses essential to fully understand the reasons for their or metastatic stage, chemotherapy (CHT) could offer and the nursing care assistants´ perception of “being choices concerning end-of-life decisions. low results in terms of prolonging survival. Aim of the with” was in relation to providing ‘comfort’ rather than Aim and objectives: This study investigates the analysis is to evaluate if it’s possible to purpose an facilitating the opportunity of facing death. The background and evolution of requests to forgo alternative approach to this selected population of consequence of this was that patients were ‘comforted’ treatment and hasten death in terminally ill cancer patients. but they were not encouraged to face death even patients. Methods: We analysed rectrospectivally survival’s data though this was a certainty. Methods: Physicians participating in a nationwide of patients that has been admitted to a palliative setting In discussing my data in light of Heidegger’s theory and study on end-of-life decision-making completed each without CHT because of age or concurrent pathologies, how human beings can face death, I will provide an month a questionnaire about a terminally ill cancer or that were early shifted from CHT to best supportive understanding of how the nurses and nursing care

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 79 Poster sessions (Friday)

assistants in this hospice managed to care for dying PE 1.F146 PE 1.F148 patients. They constructed “being with” in terms of providing comfort in order to manage their own A qualitative study of the experiences of nurses Working together - Pulmonary rehabilitation feelings around death and dying. This research offers caring for patients in the hospice setting and palliative care some important insights into the tension between the hospice ideology of a ‘good death’ and the reallity of Kelly J M1 Case R1, Murray C1, Littlewood C1 day-to-day practice. This research has implications for 1North West Hospice, Sligo, Ireland 1St Helens & Knowsley NHS Teaching Hospital, education and staff support in relation to provision for Specialist Palliative Care, Merseyside, United Kingdom end of life care. Aim: The aim of this study was to explore the experiences of palliative care nurses caring for patients Background: Current guidance suggests that in the hospice setting. The main objectives of the study pulmonary rehabilitation should attempt to optimise PE 1.F144 were to the individual’s physical, emotional and social • Examine the experiences of the palliative care nurses performance. Seizing the window of opportunity who provide care to patients in the hospice setting. Pulmonary rehabilitation programmes should include • Explore the challenges palliative care nurse face when multi component, multidisciplinary interventions for Freeman W J1 caring for terminally ill patients. patients with advanced Chronic Pulmonary airways 1Isabel Hospice, Hospice at Home, Welwyn Garden • Determine what mechanisms palliative care nurses disease. In line with national guidance and the End of City, United Kingdom use to overcome the challenges of caring for terminally life strategy, Specialist Palliative Care are routinely ill patients. involved in delivering teaching sessions in local Introduction: Recent UK Government initiatives have • Establish what supports palliative care nurses use/do programme to address end of life issues. promoted patients´ choice around their Preferred Place they need to face the challenges of caring for terminally Method: An eight week programme is planned of Care at the end of their lives. This follows research ill patients. delivered primarily by occupational and and discussion at both local and national level. One Methodology: This study guided by the grounded physiotherapists. Specialist palliative care delivers a initiative undertaken by Isabel Hospice is the theory philosophy focuses on the experience of eight single one hour session. Participants complete promotion of a pilot project which included the nurses working in a regional hospice unit in Ireland. questionnaire pre and post delivery. appointment of a discharge co ordinator. The author Ethical approval was granted from the local ethics Results: will demonstrate some of the findings and experiences committee and permission to access participants was Presession questionnaire - from this project in the poster. granted from the Director of Nursing. Data was 5% of patient’s associated palliative care with end of Discussion: There was complete agreement in the gathered using in-depth interviews and analysed using life, 5% with pain management, 90% had no hospice that good communication is at the heart of our the constant comparative method of analysis. understanding. work. Discussions around care needs must take place Findings: Analysis led to the development of the 5% of patients believed only patients with cancer need between patients, families and staff from the following main categories, making connections, palliative care. 5% stated that palliative care was for the Multiprofessional team. These discussions need to be dealing with death and dying and minding myself. The terminally ill, 90% had no idea. initiated so that we do not miss “The Window of first category of making connections is associated with 20% of respondents felt palliative care had something Opportunity” for patients particularly when they are the nature of the nurse-patient relationship in palliative to offer them. patients in our in patient unit. care. The second category of dealing with death and 20% demonstrated some awareness of advanced Carers and relatives cannot make real choices unless dying addresses challenges nurses face when caring for planning. they are given information. Research from bereavement terminally ill patients. The final category is minding Post session questionnaire - care suggests that we need to encourage relatives in myself. This highlights what support mechanisms these 80% of respondents felt less daunted about palliative their capacity to cope. We have found that involving nurses’ use and feel are needed from an organisational care. All felt that palliative care was not appropriate for patients, relatives and our staff in realistic discussions level to overcome the challenges of caring for them just now. helps to encourage feelings of competency. terminally ill patients. 100% of patients stated that the Palliative Care Conclusion: A detailed discussion is carried out and Pulmonary Rehabilitation session was useful for literature is used to support or refute these findings. gaining information. PE 1.F145 These study findings are important in illustrating these 20% of patients stated that they would like further nurses’ experiences, when very little research has been information regarding Palliative Care. Factors associated with well-being at the end of conducted previously on this cohort group. Conclusion: Patients attending Pulmonary life rehabilitation have little understanding or knowledge about the progressive nature of their illness. End of life Echteld M A1, Abarshi E1, Onwuteaka-Philipsen B D1, PE 1.F147 discussions are not perceived to be happening by this Donker G A2, van den Block L3, Deliens L1 group of patients. Further research is needed to 1VU University Medical Center, EMGO Institute, Implementation of the Liverpool Care Pathway examine this further. Amsterdam, Netherlands, 2NIVEL, Utrecht, documentation in two palliative care units in Netherlands, 3Vrije Universiteit Brussel, End-of-Life Iceland - Has it made a difference? Care Research Group, Brussels, Belgium PE 1.F149 Halfdanardottir S I1, Sigurdardottir V1, Olafsdottir K L2, Aim: This study aims to identify whether symptoms Gudmannsdottir G D3 The views, experiences and needs of older people and patient, disease and care characteristics are 1Landspitali, Palliative Care Unit, Kopavogur, Iceland, in relation to end of life care associated with well-being at the end of life. Factors 2Landspitali, Palliative Care Team, Reykjavik, Iceland, relating to symptoms are studied as well. This 3Landspitali, Gerontology Palliative Care Unit, Kennedy S M1, Seymour J1, Almack K1 knowledge is lacking at population levels, and may aid Reykajvik, Iceland 1University of Nottingham, Sue Ryder Care Centre for the development of care policy, which may contribute Palliative Care and End of Life Studies, Nottingham, to prevention of suffering at the end of life. The Liverpool Care Pathway is a well established and United Kingdom Methods: In this mortality follow-back study, data on well known document which is used for the last days of diagnosis, place of death, contact with the general life. It identifies key areas of care of dying patients and Background: Many older people worry about life- practitioner (GP), care aim, symptoms and well-being contains three sections: initial assessment and care; limiting illness towards the end of life and have few are collected through the sentinel network of GPs in ongoing care; and care after death. The LCP provides opportunities to find out about care options or how The Netherlands. This network is representative for all guidance for the multidisciplinary team on care of the these might fit with their values and circumstances. practising GPs in The Netherlands, and covers .8% of dying patient and care of families after death. The LCP There is a need to improve information for older sessions the Dutch population. Data were collected by asking is used widely in many countries in Europe and was people, families/friends, and health/social care the sentinel GPs to fill in a questionnaire for all non- seen as an important tool to improve and coordinate professionals (HSCPs) regarding both the planning and

(Friday) sudden deaths in their practises. Symptoms and well- the care for dying patients and their families in Iceland. provision of end of life care. being three days before death were measured using the The implementation on two palliative care units in Aim: To explore end of life care (EOLC) concerns and

Poster Edmonton Symptom Assessment Scale (10-point Iceland was done by following 10 Step continuous experiences of older people and inform the numeric rating scales). quality improvement programme for care of the dying development of appropriate information materials Results: Patients suffered from an average of 3.3 using the LCP framework, from the Marie Curie about advance care planning and end of life care symptoms with a score ≥4. The factor with the strongest Palliative Care Institute. support. unique negative relationship with well-being is fatigue Base review was done to provide a baseline of current Methods: We recruited 79 people from six older (p<.0001), followed by pain (p=.01) and depression practice, staff teaching sessions before implementation people’s community and self help groups in England to (p=.05). Strong or consistent factors contributing to and audit after the first 20 pathways used. a series of focus group and follow up meetings (38 symptom levels were less frequent GP-patient contact The poster will show some of the results of the base females, 41 males; ages 35-84 years). The participants and diagnoses CVA, haemorrhage, sepsis, and infection. review and the 20 first pathways used and a discussion discussed EOLC experiences and reviewed an EOLC Conclusion: Physical and psychological symptoms are on the impact the Liverpool Care Pathway has made, information booklet from a previous study. Focus group clearly the most important correlates of well-being. such as changes in thinking among staff members, data was analysed using a framework approach, with However, focusing solely on physical problems at the advanced planning and coordination of care. findings and further involvement in the study end of life is not justified. Sudden conditions may play discussed at the meetings. a role in causing suffering. The data underline the Results: Many participants described negative importance of the GP in the care for the dying. The experiences of EOLC for family, friends or partners. results also provide information for testing predictive Dissatisfaction was expressed about the support and models for well-being and symptoms. information provided and delays in accessing services. Advance Care Planning (ACP) was perceived as a good idea but difficult to enact: many said relatives are reluctant to talk about death, dying and care planning. Several reported HSCPs as poor at communicating about EOLC issues. EOLC experiences are reported as having a significant impact on bereavement both in the short and long term. Available information materials can be helpful but often are not accessible or up to date. Various suggestions about style, content and format of

80 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) information were offered. PE 1.F152 PE 1.F154 Conclusion: Many older people have concerns about end of life care, often based on difficult experiences of EAPC framework for institutional guidelines for Palliative sedation in patients attends by a home caring and bereavement. Older peoples’ needs for the use of Sedation in Palliative Care: A work in care support team support and information warrant further attention. progress Main source of funding Burdett Trust for Nursing. Zamora Mur A1, Zamora Catevilla A2, Millán M L3, Alarcón Cherny N1, Radbruch L2, European Association for J4, Alonso L1, Jordá P5, Grau A6, Moles E6, González E7 Palliative Care (EAPC) 1Hospital San Juan de Dios de Zaragoza, ESAD(HCST) PE 1.F150 1Shaare Zedek Medical Center, Cancer Pain and de Barbastro, Huesca, Spain, 2Hospital de Barbastro, Palliative Medicine, Jerusalem, Israel, 2University Huesca, Spain, 3Centro de Salud de Sabiñánigo, Huesca, To go on living or to die? Perceptions of chronic Hospital Aachen, Palliative Care, Aachen, Germany Spain, 4Fundación Ozanam, Geriatric, Zaragoza, Spain, physically ill Swiss people 5Hospital San Juan de Dios de Zaragoza, ESAD Sector I Sedation in the context of palliative medicine is the Zaragoza, Zaragoza, Spain, 6Centro de Salud de Bernhart-Just A1 monitored use of medications intended to induce Barbastro, Huesca, Spain, 7Hospital San Juan de Dios de 1University Hospital Zurich, Center for Nursing varying degrees of unconsciousness to induce a state of Zaragoza, Palliative Hospitalized Chief, Zaragoza, Spain Research and Development, Zurich, Switzerland decreased or absent awareness (unconsciousness) in order to relieve the burden of otherwise intractable Aims: To describe the characteristics of the patients in In Switzerland every year 200-250 chronic physically ill suffering. Lack of due concern for the risks involved terminal situation who are sedated in comparison with people contact an organisation for assisted suicide like and problematic practices can lead to bad and who are not sedated in our first year of existence. EXIT or DIGNITAS and decide to end their lives with sometimes unethical practices which may compromise Methods: Descriptive prospective study. their assistance. Some Swiss hospitals and nursing the credibility and reputation of the responsible Measurements: age, Barthel index, Karnofsky, number homes allow the chronic physically ill who dwell in clinicians and institutions as well as the discipline of of visit, chase time, presence of symptoms. these institutions and who wish to end their lives with palliative medicine in general. The EAPC believes that Results: N: 199.Sedation in 41 patients (20% of total the help of such organisations to do so within the the potential distress caused by these situations are sample). Characteristics of the sedated patients: mean institutions. To date there is little research about the adequately grave, to justify the need for institutional age 76 years, mean Barthel index previous 79 and in perceptions of this population and about the decision- guidelines to protect the interests of patients, their our first visit 38´5, Karnofsky 44, number of visit making processes they go through before deciding to families and involved clinicians. The EAPC is preparing 3´7±2´5 in a mean chase time 43 days; presence of terminate their lives. This lack of systematic a framework for such isititutional guidelines: the symptoms: pain 56%( mean EVA 5´8), dyspnea information/knowledge represents a serious problem current draft includes 10 specific recommendations. 32%(mean NYHA 2´9), anorexia 61%, anxiety 44%, for Palliative Care the aim of which is to support the 1. Preemptive discussion of potential role of sedation in depression 37%, insomnia 29%, psychomotricial chronically ill in a way that allows them to stay alive. end of life care and contingency planning agitation 14´6%, dementia 19´5%. Characteristics of the On this background the aim of this study is to examine 2. Providision of clear indications in which sedation no sedated patients (N: 158): mean age 78 years, mean what brings chronic physically ill people to think about may or should be considered. Barthel index previous 68´4 and in our first visit 46´27, giving up their life voluntarily rather than going on 3. The guideline should provide description of the Karnofsky 50, number of visit 2´2+/-1´7 in a mean with it. The findings will be incorporated in future necessary evaluation and consultation procedures. chase time 46 days; presence of symptoms: pain 45%( discussions and planning of Palliative Care. 4. Outline consent requirements mean EVA 6´6), dyspnea 29%(mean NYHA 2´5), To explore this so far scarcely researched substantive 5. The necessity to discuss the decision making process anorexia 54´5%, anxiety 26´6%, depression 32%, field the Grounded Theory Approach is used. The with the patient’s family. insomnia 36%, psychomotricial agitation 21´5%, individual steps of the research process (theoretical 6. Selection of the sedation method dementia 26%. sampling and data collection) and of the process of 7. Direction for dose titration, patient monitoring and Conclusions: theory generation (data analysis, developing codes and care. 1. Patients sedated suffer most functional decline and conceptual statements and a beginning theory) follow 8. Decisions regarding hydration and nutrition and poor quality of life in our first visit, and this the relevant methodological instructions. The research concomitant medications characteristic could be a scoreboard of the necessitate of sample consists of adult chronic physically ill Swiss 9. Care of and informational needs of the patient´s sedation in terminal patients. people and their significant others. family 2. Most presence of symptoms in sedated patients but The preliminary results available at present are based 10. Care for the medical professionals. lower perception of pain and dyspnea. on 40 interviews. They describe the circumstances 2 appendicies adress sedation for prsycological and 3. Lower chase time in sedated patients but most under which chronic physically ill Swiss people start to spiritual distess and d rug selection. The most current number of visits in this time. think about assisted suicide and lead them to terminate draft will be presented for discussion and critique. their life or to go on living. This study is funded by the Käthe Zingg-Schwichtenberg-Fonds of the Swiss PE 1.F155 Academy of Medical Sciences (SAMW). PE 1.F153 Does a structured end of life-care protocol Thromboprophylaxis in Austrian palliative care (Liverpool Care Pathway for the Dying Patient, PE 1.F151 inpatient units LCP) improve treatment quality and caregiver morbidity? First results of a prospective All deaths, all causes, all settings - A prospective Gartner V1, Kierner K1, Hassler M1, Watzke H H1, AUPACS semiquantitative survey all deaths audit Study Group 1Medical University of Vienna, Univ. Klinik für Innere Gasser R1, Boothe B2, Buekki J3 Finnegan C1, Groves K1 Medizin I, Palliativstation, Vienna, Austria 1University of Zurich / Department of Psychology, Life 1Queenscourt Hospice, Southport, United Kingdom Management, Zuerich, Switzerland, 2University of Aim: Palliative care patients are at high risk for venous Zurich / Department of Psychology, Clinical Psychology Aims: In the UK there is an increasing drive for patients thrombosis. Subcutaneous injections may diminish and Psychoanalysis, Zuerich, Switzerland, 3Inselspital to be able to die in their own homes. The use of tools quality of life. Guidelines for thromboprophylaxis (TP) University Hospital, Department of General Internal such as the ‘Preferred Priorities of Care’ document, the in these patients are lacking. We undertook a survey to Medicine, Palliative Care, Bern, Switzerland ‘Gold Standards Framework’ for Primary Care, the explore TP practice in Austrian palliative care inpatient ‘Liverpool Care Pathway for the Dying Patient’ and units (PCU). Aim: The LCP is a structured protocol for end of life- more recently the publication of ‘The End of Life Care Methods: A questionnaire including six questions care. One goal is to improve interprofessional Strategy’ are giving support to the changes to which about TP was sent to 21 PCUs in Austria. Data were communication, quality of death and support of need to happen within our health service to allow more documented for each patient on a certain day in July informal caregivers. Extensive qualitative research has sessions patients to die at home. We aimed to examine where 2008. 18 (86%) of 21 invited centres included 134 demonstrated substantial advances in end of live-care patients in our locality were dying and identify patients. by the LCP. However, no data exist on long-term (Friday) obstacles to achieving the patients preferred place of Results: Mean patient age was 70±15 years, 115 (86%) morbidity of bereaved family members in terms of

care. patients had cancer. 42 (31%) patients had a Karnofsky mental health issues (incidence of posttraumatic stress Poster Methods: Following a successful retrospective Cancer index (KI) <30 and 103 (77%) were alert and orientated. disorder, depression). Therefore, our aim is to Deaths Audit, in the area, carried out in 2006, a 63 (47%) patients received low molecular weight document the grade of stress reduction in professionals prospective audit of all expected deaths, from all causes, heparins in varying dosages. 40% of patients with a KI and the effect on late caregiver morbidity by the LCP. in all healthcare settings, in the Southport & Formby <30 received TP. In 25 (19%) patients TP had been Methods: Semiquantitative, validated questionnaires and West Lancashire area over a three month period cancelled at the time of referral to PCU. 29 (22%) for medical/nursing staff (n=55) and relatives of dying was performed. This included deaths in the hospital, patients were involved into the decision of continuing patients (n=45) on a general medical impatient unit hospice, nursing homes, community and elsewhere. TP, 12 (9%) into cancelling TP. Of the patients involved, before implementation of the LCP (July -August 2008). Data was collected on the actual place of death, 33 (87%) voted for continuing TP, 5 (13%) rejected A repeat questionnaire will be handed out in January preferred place of care of the patient and carer, use of further TP. 2009 to staff members, all relatives undergo a follow-up the Liverpool Care Pathway and possible reasons for Conclusion: Half of all palliative care patients in 6 months after their loved one’s death. Data will be avoidable hospital deaths. Austria receive TP, still 40% of patients with a KI <30 do. evaluated by T-test for unrelated samples and regression Results: Preliminary results of the analysis are shown Only a minority of patients is involved into decision analyses. in this poster. making on TP but if this is the case, most patients vote Results: By October 2008, data are available for staff Conclusion: Analysis of how and where patients die in for TP. members only (n=21, 18 nurses, 3 physicians). 70% our area will enable us to understand where end of life have a work record of >5 years. At baseline, care is occurring. This information will allow us to “inadequate” ordering of diagnostic tests in dying target changes in services to where they are needed patients and perceived lack of patient information by most. doctors constitute a major burden for 80% of the nursing staff. Both professions identified incomplete information of family caregivers as a source of ongoing dispute and dissatisfaction in the course of dying and bereavement process. Surprisingly, conflicts arising from hierarchical structures contributed significantly less stressful events. Conclusion: To maximally reduce unnecessary

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 81 Poster sessions (Friday)

stressors, the professional team should be provided a Results: Of 477 advanced cancer patients screened, 111 mortality rate was 24% per month. The average of decision tool to ensure a continuous quality of (23%) were judged eligible by their own physician. patients submitted to blood transfusion was 5.2%, interprofessional and professional-patient Reasons for ineligibility were the following: taking into consideration all inpatients, and not only communication. As the LCP is designed to meet this unawareness that their disease was incurable (59%), ELC patients. Palliative sedation was implemented in 76 need, upcoming trial results are expected to reveal strong psychological defences (32%) expected (3,2%) of total patients studied. The more frequent important insights how professionals and relatives cope prognosis < 2 weeks (27%); severe cognitive refractory symptom observed among those patients was with the dying process. impairment (25%); cultural resistance to deal with dyspinea, which resulted in palliative sedation (55% of these issues (9%). Of the 111 eligible patients 75 (84%) all sedated patients). Antibiotics administration is were proposed to be interviewed, 71 (96%) accepted, formally contraindicated in ELC patients. In the PE 1.F156 and 54 (72%) completed it till the end. population analyzed, 16.9% of patients were receiving Conclusion: Although not designed as an instrument antibiotics in the last 48h of life. With the main What do palliative care physicians know about of wide application in a palliative care population, fact purpose of improving ELC, discussions have been their patients end of life individual preferences? that was confirmed by the limited but expected carried out in our Palliative Care Unit engaging all eligibility rate, ELPI showed a high applicability among health professional team along with regular meetings Miccinesi G1, Borreani C2, Brunelli C3, Bianchi E3, Piva L4 eligible patients. with the caregivers to make out the best approach in 1ISPO - Cancer Prevention and Research Institute, each case. Florence, Italy, 2National Cancer Institute Foundation, Conclusion: It is crucial to make a distinction between Psichology, Milano, Italy, 3National Cancer Institute PE 1.F158 patients under Palliative Care and patients under ELC. Foundation, Milano, Italy, 4San Paolo Hospital, Milano, The last group has exceptional needs which oblige to a Italy Dying in the emergency department distinctive handling. Health professionals who deal with these patients in a regular basis should be skilled Background and aim: A good communication with Bellieu J1, Raj R2, Littlewood C3, Graham S4 not only in relieving patients’ symptoms but also in the physician plays an important role in the patient’s 1University Hospital Aintree, Aintree Palliative Care comforting their families. awareness process and in his/her preparation to death. Team, Liverpool, United Kingdom, 2Royal Liverpool It is important for palliative care physicians to know University Hospital, Emergency Department, Liverpool, patients’ preferences about end of life care and to be United Kingdom, 3St Helens & Knowsley Hospitals NHS PE 1.F160 able to discuss such matters with the patients Trust, Specialist Palliative Care Team, Liverpool, United themselves. Aim of this study is to estimate the level of Kingdom, 4St Helens & Knowsley Hospitals NHS Trust, Changed patterns in palliative sedation practice knowledge of palliative care physicians about their Emergency Department, Liverpool, United Kingdom after the introduction of a national guideline patients end of life preferences. Methods: During a training course for the use of the Background: A large number of patients are admitted Hasselaar J1, Verhagen S1, Wolff A1, Engels Y1, Crul B1, End-of-Life Preferences Interview (ELPI), a novel to the Emeregency Department (ED) with an acute life Vissers K1 instrument built to help physicians eliciting patients threatening illness which is felt to be unsalvageable. A 1Radboud University Medical Centre Nijmegen, end of life individual preferences, 23 palliative care small but significant cohort of these patients cannot be Anesthesiology, Pain, Palliative Medicine, Nijmegen, physicians were asked to complete the ELPI on the base moved elsewhere and thus require end of life care in Netherlands of the information they obtained through direct the ED. discussion with the patient. They were invited to focus Aim: To critically examine all aspects of end of life care Background: Continuous sedation, contrary to on two patients recently followed for at least two these patients received, and to decide if there is a case euthanasia, has been increasingly accepted among months. Whenever a topic had not been discussed with for adapting the Liverpool Care Pathway to this setting. medical professionals. In the Netherlands, a national the patient, physicians were told to leave the item Methods: A retrospective case note analysis of all guideline for (continuous) palliative sedation has been missing. The level of knowledge of the physician for patients who died in the ED of a district general developed to contribute to the quality of palliative each area of ELPI was calculated as the average hospital over a period of six months from June to sedation practice. The present follow up study percentage of non missing answers (NMA) to the items November 2006, excluding those in whom CPR was investigated whether the practice of continuous of that area. attempted. sedation has changed after the introduction of this Results: The areas in which physicians know more Results: (To be presented in graphical format in full guideline. about patients preferences are those related to: colour with two case examples described) In total, 16 Methods: This study compared the practice of information (96% NMA), symptom control (68% case notes were analyzed. Median age of patients was 66 continuous sedation before and after the introduction NMA), conventional treatments (87% NMA), level of years. Average time in the ED from DNAR decision was of the guideline in December 2005. Physicians were consciousness desired approaching death (68% NMA) 4hrs (15mins-21hrs). asked to report on their last case of deep and and environment and relational aspects of care (93% Discontinuation of treatment - 86% of patients had IV continuous sedation in the past 12 months. NMA), while issues concerning the process of fluids continued until death, 94% had oxygen Results: The response rate of the second measurement “preparation to death” result to be less discussed. In continued. In 50% of patients monitoring of was 69.3% (n=341). Of these physicians, 160 reported a particular physicians have a lower knowledge about observations continued until death. Two patients had last case of continuous sedation both in the baseline what is important for patients to do before dying (51% blood tests performed following the decision not to and in the follow up study. Physicians reported a NMA), about spirituality (54% NMA) and about continue with aggressive measures, including one significant increase in patient involvement in decision- religiousness (42%NMA). patient who had an arterial blood gas taken. All IV making, from 72.3% to 82.2%. Pain remained the most Conclusion: The results of this study indicate that medications were discontinued. dominant reason to start sedation while exhaustion as a palliative care physicians discuss with their patients Prescribing for the dying phase was erratic and poorly reason for sedation increased. The use of issues regarding the dying process mainly from a documented - analgesia was only prescribed for 44%, benzodiazepines increased from 69.9% to 90.4%. medical or pharmacological point of view while issues anti-emetic 19%, anti-muscarinic 6%, sedative 25% Artificial hydration was more often forgone in 2007 related to the “preparation to death” are more Communication with families was excellent but only compared to the first period (78.8% vs. 56.3%). Also, frequently ignored. 25% had spiritual care needs documented. symptom directed treatment was often forgone during Conclusion: There appears to be an adequate period of sedation. time to allow for holistic assessment and symptom Conclusion: After the introduction of the guideline, PE 1.F157 control for patients dying in the ED. Communication physicians reported a number changes in palliative and decision making are presently very good. Care sedation practice conform the recommendations of End-of-life preferences interview: Eligibility could be improved by increasing pro-active prescribing this guideline. Nevertheless, future questions to be criteria and applicability of a novel instrument for the dying phase, improved documentation and solved concern the right indication for sedation and appropriate treatment withdrawal. These findings the need for symptom directed treatment during sessions Miccinesi G1, Brunelli C2, Bianchi E2, Piva L3, Borreani C2 support the implementation of an adapted Liverpool sedation. 1ISPO - Cancer Prevention and Research Institute, Care of the Dying Pathway in the ED.

(Friday) Florence, Italy, 2National Cancer Institute Foundation, PE 1.F161 Milano, Italy, 3San Paolo Hospital, Milano, Italy

Poster PE 1.F159 Continuous deep sedation: Nurses’ involvement Background and aim: The capability to make in decision-making decisions about one´s own dying and death is Challenges in end of life care in a palliative care commonly considered a necessary component of a unit in Brazil Inghelbrecht E1, Bilsen J1, Mortier F2, Deliens L1 good death, but difficulties in communicating about 1Vrije Universiteit Brussel, End-of-Life Care Research imminent death have been documented. Scope of this Pinto C S1, Reis T1, Burburan S1, Cerqueira L1, Freitas R1, Group, Brussels, Belgium, 2Ghent University, Bioethics study is to evaluate the applicability in a palliative care Tutungi M1 Institute Ghent, Ghent, Belgium setting of the End-of-Life Preferences Interview (ELPI), 1INCa - Instituto Nacional de Câncer, Hospital do developed to help physicians eliciting patients Câncer IV, Rio de Janeiro, Brazil Research aims: Continuous deep sedation (CDS), i.e. individual preferences concerning the dying process. using medication to induce unconsciousness until Methods: From May to September 2008 18 physicians Management of critical oncological patients in the last death is an important topic of medical and ethical working in palliative care setting screened all their 48 hours of life is defined in literature as End of Life debate. Nurses are highly involved in carrying out this consecutive cancer patients to evaluate their eligibility Care (ELC). At this point, the aim is to provide comfort practice. We aimed to investigate nurses’ involvement for interview administration through the following to both patients and caregivers, avoiding dysthanasia, in the decision-making process in CDS on a nationwide criteria: age≥ 18 years; expected prognosis ≥ 2 weeks; no irrational use of resources, and therapeutic futilities level. strong psychological defences; no severe cognitive such as artificial hydration, alternative nutritional Methods: We performed a questionnaire survey impairment; no cultural resistance; awareness of pathway, antibiotic therapy, blood transfusion. among 1709 nurses who reported to have been incurability. The ELPI consists of 23 items divided into Adequate management of those patients included also involved in medical end-of-life decisions in Flanders, 2 parts according to the expected level of difficulty in palliative sedation for those who presented refractory Belgium in 2007. Nurses were asked to recall their most affording the problem: the first level explores symptoms. recent patient who had died preceded by an end-of-life preferences about issues regarding the care-giving In our study, we observed those patients, under ELC, decision, including CDS. Questions were asked about process, while the second level focuses on preparation who deceased in our Palliative Care unit from January the taken decisions and their role in it. for death. Each of the two parts is introduced by key 2007 to August 2008. During the period, the monthly Results: Response rate was 76% (N=1167). CDS was questions aimed at allowing the patient to decide average admissions in our facilities were 164 with a reported in 253 cases. Communication between the whether and when to stop exploring such sensitive global mortality rate of 65%, per month. However, physician and the nurse about the decision occurred in matters. considering exclusively patients under ELC, the 82% of cases. Before making a decision, physicians

82 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) asked nurses for information about the patient’s PE 1.F163 minority have access to specialised palliative care. On condition (53%) and relatives’ opinions (44%). In 38% the other hand, in specialised palliative care about 90% of cases nurses informed the physician about the Expectations about and impact of the Liverpool of the patients have cancer. A further increase of patient’s condition on their own initiative. In 28% of Care Pathway for the dying patient (LCP) in an registrations in the Swedish palliative register will cases the physician had taken the decision in Italian hospital provide more robust data on inequities of end of life consultation with the nurse. The nurse initiated the care. discussion about CDS in 9% of cases. Communication Di Leo S1, Beccaro M1, Finelli S1, Borreani C2, Costantini M1 between nurses and patients or relatives occurred in 1National Cancer Research Institute, Regional Palliative respectively 26% and 76% of cases, mostly about their Care Network, Genoa, Italy, 2National Cancer Institute PE 1.F165 wishes about CDS (respectively 68% and 67% of cases). Foundation, Psychology Unit, Milan, Italy For both patients and relatives, about 40% expressed Quality at the end of life - Report from the their wishes to the nurse before expressing it to the The study is aimed at exploring the expectations and Swedish Palliative Register 2007 physician. the impact on healthcare staff of the LCP in an Italian Conclusions: Communication between physicians hospital. It is part of the project “Implementation and Heedman P-A1, Axelsson B2, Fransson G3, Lundström S4, and nurses and between nurses and relatives is assessment of the Italian version of the ‘Liverpool Care Fürst C J5 common in decisions on continuous deep sedation. Pathways for the Dying Patient’ (LCP-I)”, with the 1Palliativa Rådgivningsteamet, Universitetssjukhuset, Physicians consider nurses as experts on the patient’s objective of evaluating the feasibility of LCP Linköping, Sweden, 2Storsjögläntan, Östersund, condition. Patients and relatives consider nurses as implementation in Italian hospitals. Qualitative Sweden, 3PRIVO, Oskarshamn, Sweden, 4Stockholms companions to talk to. Nurses act as essential information derived from four Focus Group Meetings Sjukhem, Oncology-Pathology, Karolinska Institutet, informants and intermediaries, and sometimes (FGMs) which were separately carried out with six Stockholm, Sweden, 5Stockholms Sjukhem, Stockholm, consultants in decision-making of continuous deep physicians and nine nurses working at the general Sweden sedation. medicine ward of an italian hospital before the Source of funding: Fund for Scientific Research, beginning and after the end of the implementation Aim: To describe quality indicators of end of life care Flanders. process. Eligible participants were sampled stratifying based on the Swedish palliative register. by age, sex and work team. Interview topics concerned Methods: The “Swedish Palliative Register” is a end-of-life care related problems, expectations about nationwide quality register for the improvement of end PE 1.F162 and impact of the LCP program. Tape recordings of the of life care. The aim of the register is to register and focus groups were transcribed verbatim, and the report quality indicators related to care during the last Metropolitan versus nonmetropolitan variation transcripts analyzed independently by two research week of life for all expected deaths in Sweden. The in place of death in Belgium, the Netherlands psychologists using thematic content analysis. register started in 2005. All health and community and England Five topics were identified: pain management and based care services were invited to use the register. All discontinuing inappropriate treatments, registrations were made on line according to ethical Houttekier D1, Cohen J1, Bilsen J2, Addington-Hall J3, communication with patients, relatives and between and legal requirements. Onwuteaka-Philipsen B4, Deliens L5 professionals, practical issues. As compared to those Results: The total number of registered deaths in the 1Vrije Universiteit Brussel, End-of-Life Care Research reported in the first FGMs, responses from the final register was 9 903. This is just above 10% of the total Group, Brussels, Belgium, 2Vrije Universiteit Brussel, FGMs evidenced physicians feel themselves more number of deaths in Sweden in 2007. Compared to End-of-Life Care Research Group, Brussels, Belgium; confident with pain management and with 2006 this is a 100% increase. The increase in Ghent University, Bioethics Institute, Ghent, Belgium, discontinuing inappropriate treatments, and they were registration differed between different counties, e.g. 3University of Southampton, School of Health Sciences, more inclined to recognize the value of nurses’ work. Kronoberg 0.8-8% of all deaths and for Örebro 0-7.4%. Southampton, United Kingdom, 4VU University Nurses highlightened advantages in using PRN 53% of all registrations were made through specialised Medical Centre, Department of Public and medication, but stressed lack of personnel and time as palliative care units/teams. 30% of registrations were Occupational Health, EMGO Institute, Amsterdam, obstacles to really improve end-of-life care. All performed in community care homes and about 15% Netherlands, 5Vrije Universiteit Brussel, End-of-Life participants seemed to become more aware of their through hospital wards. Care Research Group, Brussels, Belgium; VU University own difficulties in communication tasks and, Discussion: The number of registrations is increasing Medical Centre, EMGO Institute, Amsterdam, paradoxically, more unsure about their own ability in year by year form the start in 2005. In some counties Netherlands supporting and informing the dying patient and only few percent of deaths are included, in other his/her family. counties 1/3 of all deaths. The low number of Aim: Place of death is considered an indicator of good LCP-I implementation can improve either knowledge registrations may reflect less availability of palliative end-of-life care, with home death preferred by most about physical symptoms management, and care. terminally ill patients. Previous research suggests professional awareness of the problems related to substantially more hospital death and less home death emotional and informative support in end-of-life care. in the metropolitan versus non-metropolitan regions of PE 1.F166 Europe. This study therefore examines metropolitan versus nonmetropolitan variation in place of death in PE 1.F164 Constructing dying and death; An ethnographic Belgium, the Netherlands and England. account of the last months of life of cancer Methods: Death certificate data of all deaths in 2003 Dying of cancer in Sweden - Report from the patients were linked to census data. Place of death of those Swedish Palliative Register 2007 dying of 7 conditions likely to benefit from palliative Anagnostou D1, Richardson A1, Wiseman T1, Higginson I2 care (cancer, heart/renal/liver failure, Axelsson B1, Lundström S2, Fransson G3, Heedman P-A4, 1King’s College London, Florence Nightingale, School respiratory/neurodegenerative disease, HIV/AIDs) living Fürst C J2 of Nursing and Midwifery, London, United Kingdom, in 6 English, 3 Dutch and 2 Belgian metropolitan 1Storsjögläntan, Östersund, Sweden, 2Stockholms 2King’s College London, Palliative Care, Policy and regions was compared to that of nonmetropolitan Sjukhem, Oncology-Pathology, Karolinska Institutet, Rehabilitation, London, United Kingdom residents. When examining differences in place of Stockholm, Sweden, 3PRIVO, Oskarshamn, Sweden, death (home vs. hospital; care home vs. hospital), 4Palliativa Rådgivningsteamet, Universitetssjukhuset, Aims: This study concerns with the experience of care multivariate analysis was used to control for possible Linköping, Sweden and illness of patients with advanced cancer in Greece. confounders: cause of death, sex, age, income, social It also aims to understand the dying process as it is support, and available hospital and care home beds. Aim: To describe quality indicators of cancer deaths constructed over time, by following patients, families Results: Those living in metropolitan regions less based on the Swedish palliative register. and health professionals involved in their care, until often died at home and more often in hospitals, Methods: The “Swedish Palliative Register” is a patients’ death. compared to nonmetropolitan patients. In Belgium and nationwide quality register for the improvement of end Methods: The study adopted a qualitative approach, sessions the Netherlands they also more often died in care of life care. The aim of the register is to register and employing ethnography as it is methodological homes. Multivariate logistic regression analyses showed report quality indicators related to care during the last framework. Over a period of 18 months each patient (Friday) that, even after controlling for possible confounders, week of life for all expected deaths in Sweden. The was followed over time as they came in contact with

those in nonmetropolitan regions were more likely to register started in 2005. All health and community the hospital and other health care services. Fourteen Poster die at home and less likely to die in hospitals than based care services were invited to use the register. All patients, their family members, nurses and doctors those in metropolitan regions (OR: Eng:1.26; NL:1.49; registrations were made on line according to ethical involved in patients´ care (eighty two participants in B:1.74). In England, those in metropolitan regions were and legal requirements. Death registrations for 2007 total) were observed (830 hours of participant more likely to die in hospital and less likely to die in a including patients with cancer as a main diagnosis were observation) and interviewed (20 formal and more than care home than nonmetropolitan residents. selected for analysis. 50 informal discussions) throughout this period. Discussion: Dying in Europe’s metropolitan regions is Results: The total number of cancer related deaths in Results: Patients experience of their illness and care less likely to occur at home and more likely to occur in the register was 6 602. The range of cancer deaths was 5 during their last months of life was influenced by their hospital than in nonmetropolitan regions. This - 57 % of the total number of cancer deaths in the own personality style and the meaning they attached to inequality could point at a different end-of-life care in county. Cancer patients were older and had longer care their experience. Family relationships, as well as metropolitan regions, and suggests the need for a when cared for in community based care facilities than interactions with health professionals were proved to be metropolitan approach to end-of-life care in all care in specialised palliative care or in acute care hospitals. critical in the decision making during their last months settings. Almost 50% of the patients in specialised palliative care of life. Dying processes were equally influenced by the were reported to be without any symptoms during the health care context and the provision of care offered last week of life. In acute care hospitals and in short or throughout their journey. All these parameters shaped long term community care the number of patients patients’ attitudes towards their dying and their without symptoms the last week of life was 26%, 44% preferences over care and place of death. and 55%, respectively. Drugs were prescribed on Conclusion: Dying processes and patients’ experiences demand for pain, anxiety, respiratory tract secretions of their illness and care are constructed over time by and nausea for a majority of patients in palliative care the patients themselves, their interactions with those but to a lesser extent to other patients. Only 15% of all involved in their care and the broader context in which dying patients with cognitive ability to assess pain with this experience is taking place. Such aspects should be a VAS/NRS scale had done so. taken into consideration when planning for palliative Discussion: The quality of end of life care varies care services, sensitive to patients’ needs in the between different types of care. While about 1/4 of the particular cultural contexts where they live and die. yearly deaths in Sweden are caused by cancer only a

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 83 Poster sessions (Friday)

PE 1.F167 PE 1.F169 PE 1.F171

Are levels of comfort (as documented on the “Vigil views” - Impact of using care of the dying Are patients who die at home any different? Liverpool Care Pathway for the dying patient - pathway in acute hospital setting LCP) in the last 24 hours of life comparable for Feio M M1, Lopes Oliveira A2, Pinto M M3, Tomé M M1, both cancer and non cancer patients? Hough J1, Jack B2, Groves K1 Neves S1, Lupi S1, Coimbra F1 1West Lancs, Southport and Formby Palliative Care 1Instituto Português de Oncologia Lisboa Francisco Gambles M A1, McGlinchey T M1, Murphy D2, Ellershaw J Services, Southport, United Kingdom, 2Edge Hill Gentil, EPE, Unidade de Assistência Domiciliária, E1 University, Ormskirk, United Kingdom Lisboa, Portugal, 2Centro de Saúde Alcantâra, Lisboa, 1Marie Curie Palliative Care Institute Liverpool, Portugal, 3Instituto Português de Oncologia Lisboa University of Liverpool, School of Clinical Sciences, Background: With the release of the End of Life Francisco Gentil, EPE, Lisboa, Portugal Liverpool, United Kingdom, 2Royal Liverpool and Strategy in July 2008, End of life care is receiving more Broadgreen University Hospitals NHS Trust, Directorate emphasis. Use Of the End of Life tools, including The To assess if the characteristics of the patients who died of Palliative Care, Liverpool, United Kingdom Liverpool Care Pathway (LCP), or equivalent, is at home were different from those who died elsewhere. increasing across all healthcare settings and not just Retrospective study, analyzed patients followed from Aim: The aim of this presentation is to use data within specialist palliative care services. 8/2006 to 8/2008 that died: demographic data from collected as part of the first National Care of the Dying There have been studies looking at the impact of the patient and carer, pathology, symptoms. Statistical Audit in Hospitals in England to compare documented LCP on staff in the hospice setting and nurses with an analysis was performed using Chi-Square and one-way levels of comfort for patients with a diagnosis of cancer interest in palliative care, but there is limited ANOVA. and those with a non-cancer diagnosis. This audit was information on the views of non-palliative care staff. Identified 77 patients that died: age 69±13, male 54,5% carried out by the Marie Curie Palliative Care Institute This study, looked at the views of clinical staff on the (n=42), median Palliative Performance Score (PPS) on Liverpool in collaboration with the Royal College of impact of the use of a care of the dying pathway (Vigil admittance 40. The most frequent primaries were lung Physicians using data collected for patients whose care pathway) on patients, their carers and staff in the acute 18% (n=14), head and neck 17% (n=13) and digestive in the last days of life was delivered using the LCP. hospital setting. 17% (n=13); 78% (n=60) were metastatic. Patients were Method: 118 Hospitals contributed data from LCPs for Method: The study had a mixed methodological followed by the our team 78±150 days (0-1028). The up to 30 patients (2672 total) who died within a 3 approach, using both qualitative and quantitative carers: aged 58±14, female 80% (n=61), male 20% month period. The sample was then split into 2 groups: methods involving 2 phases and had local ethical and (n=15), one patient had no carer. The most frequent Group 1 (cancer) and Group 2 (non-cancer). R+D approval. carer/patient relationship was spouses 47% (n=36) and Descriptive comparisons were undertaken in levels of Phase one: Semi- structured interviews of a purposive descendants 26% (n=20). Sixty-nine percent of the comfort (for Pain, Agitation, Respiratory Tract sample of 12-15 non-palliative care nursing and carers (n=53) received help from other family members. Secretions, Nausea & Vomiting, & Dyspnoea) as medical staff across all grades and specialities was Place of death: 48% (n=37) patients died at home, 42% documented on the LCP 4 hourly in the last 24 hours undertaken. The responses were recorded and analysed (n=32) at our hospital and 10% (n=8) in other of life. and emergent themes sought. institutions. When compared, those who died at home Results: Group 1 (cancer) accounted for 45% of the Phase two: Involved a questionnaire, sent to all with those who died elsewhere (gender, topography of sample and Group 2 (non cancer) for 55%. A high doctors in training grades, within the hospital. The primary, carer gender, patient/carer relationship, help proportion of Group 2 patients had Stroke, heart questionnaire explored emergent themes from phase from other family members, presence of delirium or failure, dementia, or chronic renal failure. Documented one. dyspnea, age of patient, carer age, PPS on admittance, levels of patient comfort for all symptoms were Results: This poster displays the results of both phases days on charge of the team) only gender of the patient comparable between groups. For example, the 4 hourly and demonstrates the views of non-palliative care staff and PPS reached statistical significance. Carer gender assessments of pain showed that Group 1 patients were who use the pathway and how this information will be approached significance (p=0.06). not comfortable in only 5% of documented used to inform future education programmes. Our study has the limitations of being retrospective and assessments and Group 2 patients in only 3% of having a small number of patients. Being a man, with a documented assessments. However, the amount of low PPS on admittance and possibly being cared by a assessments not documented (missing data) were PE 1.F170 woman were factors associated with death at home. relatively high for both groups (17% & 20% respectively). Assessing the impact of an LCP Facilitator using Conclusions: The high % of patients with a non- data from the National Care of the Dying Audit PE 1.F172 cancer diagnosis in this sample illustrates that the LCP Hospitals England (NCDAH) is used in these hospitals for patients regardless of Refraining from blood product substitution in diagnosis. The results also suggest that patient comfort Gambles M A1, McGlinchey T M1, Murphy D2, Ellershaw J patients with far advanced haematological in the last 24 hours of life are high in both groups. The E1 malignancies - Case series and conceptual relatively high levels of assessments not documented is 1Marie Curie Palliative Care Institute Liverpool, framework a concern for both groups. These preliminary results University of Liverpool, School of Clinical Sciences, will be discussed in terms of the methodological Liverpool, United Kingdom, 2Royal Liverpool and Alt-Epping B1, Eggebrecht D1, Eulitz N1, Nauck F1 approach taken and the need for future research. Broadgreen University Hospitals NHS Trust, Directorate 1University Medical Center Göttingen, Dept. of of Palliative Care, Liverpool, United Kingdom Palliative Medicine, Göttingen, Germany

PE 1.F168 The aim of this work is to use data collected in the first Introduction: In patients with haematological National Care of the Dying Audit in Hospitals in malignancies, substitution of blood components may Attitudes of Austrian patients with malignancies England involving 2672 patients whose care in the final be an integral part throughout the course of the towards writing advance directievs days of life was delivered using the Liverpool Care disease, as bone marrow failure is a sequel of Pathway for the Dying Patient (LCP). The data is used to chemotherapy and the disease itself. Continuing Kierner K A1, Gartner V2, Hladschik-Kermer B2, Hassler M2, explore levels of documentation and outcomes for two substitution of blood has been postulated a relevant Watzke H2 patient groups - those in hospitals with an LCP problem in referring patients to palliative care (PC) 1Medical University of Vienna, Department of internal Facilitator and those in hospitals without - as a services, even in far advanced disease. In PC, clear Medicine I, Vienna, Austria, 2Medical University of designated person providing training, education and concepts for questioning or restricting transfusions, in Vienna, Vienna, Austria ongoing support is deemed important for success. order to avoid medical futility at the end of life, have Method: This work focuses on 50 hospitals that not been defined. Aim: Advanced care directives (AD) are intended to submitted the full sample of 30 cases (n=1500). The Methods: Within two years, all patients with sessions preserve autonomy of patients at the end of their life. sample was split into 2 groups. haematological malignancies contacted by our PC We therefore investigated attitudes towards AD in Group 1: Hospitals with an LCP facilitator; services were retrospectively analyzed with regard to

(Friday) hospitalized patients with malignancies in a Group 2: Hospitals without. intended or accomplished transfusion restriction prospective controlled study. Descriptive comparisons were undertaken to assess: processes. A conceptual framework is described, based

Poster Methods: All patients were consecutively approached (1) the number of 4 hourly assessments (for Pain, on repeating patterns of medical and psychosocial and were informed about the features of AD in a Agitation, Respiratory Tract Secretions, Nausea & decision criteria. standardized manner by a single independent Vomiting & Dyspnoea) not documented in the last 24 Results: 40 patients with underlying haematological physician. One hundred eight (39 female, 69 male; hours of life, and malignancy were enrolled in our PC services. In 23 of age:56.6±14.9 years) out of 140 patients who were (2) for those that were documented, the reported level those, procedural aspects of blood product substitution invited, completed the study. of absence of these symptoms for patients in this were discussed. Criteria to question ongoing Results: Among these, 5% (5/108) already had an AD period. substitution were far advanced disease, absence of and 85% (92/108) did not want to make one. “Full trust Results: For Group 1 the number of assessments not subjective transfusion benefit, or possible interference in physicians” (22%) and “not important for me at the documented for all symptoms assessed were lower - e.g. with the patients´ priorities like being cared for a home moment” (15%) were the most prevalent reasons for for Pain the proportion in Group 1 was 15.9%, despite being unfit for transportation. Conceptual denying the need of AD. Only 10% (11/108) of patients compared with 25.4% in Group 2. For those 4 hourly patterns in a PC approach comprised an assessment of decided to make an AD. Their decision was not found to assessments that were documented, the level of previous transfusion requirements / degree of bone be interrelated with a specific diagnosis nor with a reported patient freedom from pain was similarly high marrow failure, logistic expenditures, redefining panel of socio-demographic variables. Patients who (Group 1, 95%; Group 2, 96%). symptom guided transfusion criteria, determining the decided for an AD were significantly more depressive Conclusions: These preliminary results suggest that subjective net benefit by a given transfusion, than patients who decided against it (HADS-D: 8.3±5.0 higher compliance with the document for the prioritizing the patients´ wishes, using transfusion vs.5.8±4.1; p= 0.035). Their HADS depression score was assessment of these symptoms is more likely when an related questions to address further end of life aspects negatively associated with their Karnovsky index (r=- LCP facilitator is present, though the level of comfort and explaining and preparing for bleeding crises. 0.232, p=0.017). for documented assessments is similar. However, the Discussion: This case series demonstrates that PC Conclusions: Our data show that demand for AD is fact that almost one quarter of all required assessments services can provide substantial conceptual support for low in our population of hospitalized cancer patients were missing for Group 2 is of concern and should be reassessing transfusion needs in patients with far and is associated with a high depression score and a low taken into account when interpreting these results. advanced haematological malignancy, taking into performance status. These results and the results of further planned account not only clinical and disease specific, but also analyses will be discussed in terms of the psychosocial aspects and individual values. methodological approach taken and their relevance to future research.

84 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday)

PE 1.F173 55% patients, Tramadol- 38%; Paracetamol- 36%; physicians, nurses, personal support workers, spiritual NSAIDs- 24%; Fentanyl - 23%; Ketamine - 7% and care/life enrichment workers and residents´ families. Reversal of increasing trends in hospital deaths Methadon - 3%. 375 patients (16%) received various Interviews were audiotaped, transcribed and analysed to is associated with development of hospice home forms of physiotherapy. This data shows that our identify core themes in relation to the CHPCA Norms care services hospice was a valuable complement to the hospice of Practice. home care. Results: All participants identified the importance of Goh C R1, Beng A L2, Poulose J V3, Ramaswamy A4 comfort at the end of life and were committed to 1Lien Centre for Palliative Care, Duke-Nus Graduate providing a good death for residents. However, the Medical School, Singapore, Singapore, 2Ministry of PE 1.F175 philosophy and scope of issues included in the CHPCA Health, Health Care Finance and Corporate Services palliative care norms were not understood by most Division, Singapore, Singapore, 3Lien Centre, Duke-Nus Study about the knowledge and use main participants. Resources and education were lacking to Graduate Medical School, Singapore, Singapore, caregivers of advanced cancer patients have of address psycho-social issues. Disease mangement and 4Hospice Care Association, Singapore, Singapore the advanced directives (AD) in the oncology physical care were the primary focus. palliative care service Conclusion: The CHPCA Norms provided a useful Background: In developed countries including framework to identify the scope of end of life care and Singapore, increasing numbers of people are dying in González-Barboteo J1, Llorens S1, Espinosa J1, Porta-Sales J1, identify gaps in a LTC home. hospital while fewer people end up dying at home. Maté-Méndez J2, Garzón C1, Fernández A1, Tuca-Rodríguez Hospice home care services have developed over the A1, Artigas R1 past 20 years in Singapore. These services covered 1Institut Català d´Oncologia, Palliative Care Service, PE 1.F177 largely people suffering from cancer, 99.5% in 1990 and L´Hospitalet de Llobregat, Spain, 2Institut Català 92% in 2006. The number of non-cancer patients d´Oncologia, PsychoOncology Unit, L´Hospitalet de Do German physicians feel comfortable with served by the hospice services is only beginning to Llobregat, Spain advance directives? increase in recent years. Objective: To examine the impact of the development Introduction: Professionals who practice palliative Eichstädt C1, Laske A1, Diemer W1 of hospice home care services on the place of death in care face daily different kinds of ethical problems. 1University of Greifswald, Dept. of Anaesthesiology, people dying of cancer as compared to other diseases. Under these circumstances the document of advance Intensive- and Palliative Care, Greifswald, Germany Methods: Trends in place of death for people aged 65 directives (AD) is considered as a useful instrument in and above were examined for 3 major disease the making decision process in these difficult Aim: Up to now advance directives have not been laid categories: cancer (ICD-9:140-208), heart disease (ICD- situations. To discuss the execution of the AD with a down by law in Germany. Therefore uncertainties are 9:390-429) and lung disease (ICD-9:460-519) for the patient in an advanced-terminal phase has been common among physicians and patients how to deal years 1990 to 2006. Data from the largest hospice home considered harming for the patient since it involves with these documents. We performed a survey care service in Singapore, accounting for 80 to 90% of facing him with a real situation such as death. There is concerning the knowledge, experiences and attitudes of patients, were also collected for this period. Data on scarce data about AD in the field of Palliative Care to physicians on advance directives. The evaluation can diagnosis, place of death and length of stay under the confirm this statement. encourage the discussion about the necessity of a legal service were also collated. Aim: To determine the number of main caregivers of regulation. Results: People dying of heart disease and lung disease advanced cancer patients who know the AD and their Methods: A questionnaire consisting of 21 questions showed a rising trend in hospital deaths from 1990 to opinion about the impact it produces on the patient to on advance directives was dispatched to 600 randomly 2006. The proportion of elderly patients dying in inform him about the existence of AD. selected physicians in clinics und private practices in hospital rose from 48.2% in 1990 to 63.2% in 2006 for Methods: Main caregivers were surveyed whether Mecklenburg-Western Pomerania with the support of heart disease, and from 45.7% to 68% for lung disease, related to the patients or not. They were asked about the Board of Physicians in April 2008. 35% (n=207) respectively. However, cancer deaths showed the their knowledge of AD, source, desire to know AD, and have been returned until today. opposite trend, decreasing from 55% of cancer patients if they consider it useful or invasive to inform the Results: Two thirds of the physicians feel insufficiently dying in hospital in 1990 to 44% in 2006. Over the patients about the AD. If the answer was invasive the informed about advanced directives and the same period, the number of patients dying of cancer reasons were stated. recommendations of the Federal Board of Physicians on seen by hospice home care services increased from 5.8 Results: 64 caregivers were interviewed. 73.4% of the this topic. Almost all physicians consider a living will as % of total cancer deaths in 1990 to 53.1% in 2006. The relatives don’t know about AD although 72.3% showed important to determine the presumed wishes of the median length of patient contact with the hospice interest. 49.2% considered it would not interest the patient who is not able to give an informed consent. home care services also increased from 13 days in 1990 patient. 48.4% thought the patient could be bothered if But only a half of the physicians find it useful in the to 39 days in 2006. informed about AD. Main reasons: daily work. More than 80% refuse that there should be Conclusion: Development of hospice home care 1) to talk about AD states clearly the topic of death, an obligation for every patient to draw up an advance services for cancer patients is associated with a reversal 2) previous feelings of rejection to talk about the illness directive. The predominant majority is interested in of trend towards hospital deaths in Singapore and had and the possibility of dying, professional training on medical decision making and enabled more cancer patients to die at home as 3) family’s protection. advance directives. opposed to non cancer patients. Conclusion: It is necessary to improve the policies of Conclusion: It would be helpful to implement diffusion and information of AD in our centre. It would advance directives into the German Civil Law to avoid be appropriate to develop a study about the impression further uncertainties. Examples exist in Australia, PE 1.F174 patients have when informed about AD. Austria or France. This would help people who drew up their living will to have their autonomy being A survey of in-patient care of St Lazarus Hospice respected. But the advance directive should remain a in Krakow, Poland in the years 2000-2007 PE 1.F176 voluntary instrument for the patients.

Betkowska I1, Gradalski T1, Burczyk-Fitowska B1, An examination of end of life care in a Canadian Bialon-Janusz A1 long term care home using the Canadian Hospice PE 1.F178 1St Lazarus Hospice, Kraków, Poland Palliative Care Association norms of practice Care of the dying: The last 72 hour of life Hospice 30-bed ward was opened in 1996 in Kraków, Kelley M L1, Wiersma E2, Sims Gould J3, Kozak J4, Habjan district town of approx.800 000 inhabitants. In the S1, Arseneau L5, MacLean M1 Ebert Moltara M1, Ciri? E1, Rajer M1, Gugi? J1, Segedin B1, years 2000-2007 there were 2352 patients admitted 1Lakehead University, Centre for Education and Strancar K1, Cervek J1 (from 294 to 370 per year). Age ranged between 15-102 Research on Aging and Health, Thunder Bay, Canada, 1Institute of Oncology, Ljubljana, Slovenia years (mean 69),51% had been sent from hospitals. 2Lakehead University, Public Health, Thunder Bay, sessions 86% patients died in the ward and about 11% were Canada, 3University of British Columbia, Sociology, Introduction: End of life care is an integral part of discharged for further care at home. 91% of patients Vancouver, Canada, 4University of British Columbia, oncological treatment. A key issue to appropriate care is (Friday) were diagnosed with cancer, (mostly lung (449), breast Faculty of Medicine, Vancouver, Canada, 5Lakehead diagnosing dying. However, predictive signs of

(197), brain (137), colon (117), stomach (95) and cervix University, Sociology, Thunder Bay, Canada upcoming death are often not recognized. For that Poster uteri (81) which was incoherent with death rate in reason inappropriate procedures and irrelevant drugs Krakow population. Among 206 (9%) of non-cancer The Canadian Hospice Palliative Care Association are introduced. patients, the most common recognitions were (CHPCA) has developed Norms of Practice to guide the Aim: To evaluate care of a dying patients (pts) in atherosclerosis (74), cerebral infarction (13), multiple provision of quality palliative care in all care settings Department of Palliative care (DPC), Department of sclerosis (10), congestive lymphatic failure (8), where people die an expected death. These Norms Medical Oncology (DMO) and Department of ischaemic myocardial disease (7) and chronic heart address issues of disease management, physical, Radiation Oncology (DRO). Our questionnaire was failure (6). The average awaiting time for admission was psychological, social, spiritual, practical, end of designed to highlight three main topics: recognition of 6 days, and mean time of residence 27 days (from 1 to life/death management, loss and grief. They also a dying process; changes in treatment decision; and 701 days),both with decreasing tendency in recent outline the processes for providing care and the influences of Liverpool Care of the Dying Pathway years. Medium occupation of beds widened from 75% organizational context needed to support quality (LCP) introduction. to 88%. Patients’ the most common problems noted palliative care. While long term care (LTC) homes are a Material and methods: We analyzed medical were fatigue 89%, somnolence 76%, pain 73%, loss of major site of death for elderly people in Canada, little documentation of 139 pts with solid tumor who have appetite 66%, general discomfort 52%, depression 39%, research has focused on examining the delivery of end died during hospitalization from January 2007 till June constipation 34%, dyspnea 32% and pressure sores of life care for residents in long term care homes using 2008. We have registered any written note of dying 26%. Drugs most often used were anxiety- the CHPCA Norms as a framework for analysis. signs according to LCP, use of LCP, symptom relieving/hypnotics (60% of admitted patients), Aim: To examine LTC staff and family members´ management and drugs being used in last 72 hours of Morphine (55%), steroids (52%) miorelaxants (45%) understanding and experiences of hospice palliative life. Haloperidol (40%), antibiotics (40%) Tramadol (38%) care in a LTC home using the CHPCA Norms of Practice Results: Average age of pts was 62.4 years. At least one and detergent laxatives (38%). There were 987 patients as a framework for analysis. sign of upcoming death was found in 42.4% of medical (42%) parenterally hydratated (mostly subcutaneusly). Methods: A focused ethnography was conducted in a documentation (71.0% DPC, 45.0% DMO, 27.9% DRO). Average survival time among patients who received 110 bed accredited long term care home in Ontario, LCP was used in 7.2% (32.3% DPC, 0% DMO and DRO). antibiotics was 44 days (in group not taking antibiotics Canada that experienced 18 resident deaths in the 6 pts (4.3%) received transfusion (0% DPC, 5.0% DMO, 14,6 days) and among parenterally hydratated was previous year. Over the course of four days of intensive 5.9% DRO), 11 pts (7.9%) received parenteral nutrition 31,42 days (patients without hydratation 24%). More field work, 98 people were interviewed individually or (7.5% DPC, 12.5% DMO, 7.4% DRO), 85pts (61,2%) than a half of admitted required analgetics; Morphine- in focus groups. Participants included administrators, parenteral hydration (35.5% DPC, 65.0% DMO, 70.6%

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 85 Poster sessions (Friday)

DRO). Laxatives were administered to 44 pts (31.7% was acceptable to the NMAG and the Drugs and confidence interval (CI) 15%-43%) of patients total, 35.5 DPC, 30.0% DMO, 30.9% DRO), Therapeutics Committee and printed. A further audit of presented with an advanced directive. Indications for corticosteroids to 66 pts (47.5% total, 29.0% DPC, timeliness was then undertaken to see whether PCC in the ED and their frequency were: discussions of 45.0% DMO, 57.4% DRO), antibiotics to 46 pts (33.1% improvement had been made. goals of care-100%; determination of “Do Not total, 19.4% DPC, 27.5% DMO, 42.6% DRO) and Results: This poster shows the new prescription sheet Resuscitate (DNR)” code status-84% (95% CI 73%-96%); diuretics to 40 pts (28.8% total, 9.7% DPC, 35.0% DMO, compared to the standard one, and displays the results pain management recommendations-79% (95% CI 33.8% DRO). of the second audit, post introduction of the new 66%-92%); admission to palliative care service-87% Conclusion: Our results revealed important system, compared to the first audit. (95% CI 76%-98%). 71% of patients expired in the differences in recognizing and registering upcoming hospital and 29% were discharged. Mean length of stay death between our departments and consecutive was 2.66 days (median 2 days, SD 2.28). differences in appropriate decision. According to our PE 1.F181 Patients receiving PMC in the ED presented with non- results introduction of LCP (in DPC) improve approach cancer diagnoses in approximately two-thirds of cases. to a dying patient. Overcoming barriers to improve end of life care Although requested infrequently, PMC were associated in developmentally disabled adults residing in with high rates of DNR orders and admissions to the group homes in North Sydney palliative service and short lengths of hospital stay. PE 1.F179 Prospective studies are needed to determine the need Irani S1 for and benefits of PMC in the ED. Changing the culture - Reversing the trend in 1Greenwich Hospital - Hope Healthcare, Greenwich place of death Community Palliative Care, New South Wales, Australia PE 1.F183 Groves K E1, Stevenson A2, Baldry C R1 Advanced medical technology has progressively 1West Lancs, Southport & Formby Palliative Care resulted in an increase in life expectancy of the general Evolution of opiate use in two hospitals of Services, Palliative Medicine, Southport, Merseyside, population, which includes developmentally disabled Madrid (Spain) between 2002 and 2006 United Kingdom, 2Queenscourt Hospice, Palliative adults (RN, 2007). Palliative care in many ways has Medicine, Southport, United Kingdom enhanced the quality in end of life care of terminally ill Ruiz Lopez D1, Alonso Babarro A2, Gomez Salcedo P3, Varela patients, but adults with developmental disability have Cerdeira M4, de Luis Molero V J1 Background: Five years ago in 2003 the trend for not yet encompassed the benefits to the same extent 1Fundacion Instituto San Jose, Palliative Care Unit, place of death was that of increasing hospital deaths (Centre to Advance Palliative Care, 2000). This maybe Madrid, Spain, 2Hospital Universitario de la Paz, and decreasing home deaths despite increased due to their minority status of just 0.8% in the general Palliative Care Unit, Madrid, Spain, 3Hospital education for all healthcare professionals and slowly Australian population (Australian Bureau of Statistics, Universitario de la Paz, Pharmacy Department, Madrid, increasing use of two of the End of Life Tools, the Vigil 2006), making them comparatively invisible to the Spain, 4Centro de Salud Reyes Católicos. Área 5 de Pathway (Liverpool Care Pathway) and the Gold society at large and to the HealthCare services. This Atención Primaria de Madrid, Equipo de Soporte Standards Framework (for palliative care in primary paper will focus on some of the many complex issues Domiciliario, Madrid, Spain care). faced by developmentally delayed adults ensuing in Method: Although a certain amount of education was potential obstacles towards the achievement of efficient Aim: Describe the evolution of prescription opioids already being provided to all healthcare professionals in and cost effective quality of life in terminal phase of from 2002 to 2006 in two hospitals of Madrid in Spain all healthcare settings it clearly was not having the their illness. Most common are communication (Hospitales Universitarios de la Princesa y la Paz). desired effect of ensuring that the trend for decreasing barriers effecting provision of care to patients and Methods: A retrospective observational study of home deaths and increasing hospital deaths were families which can result in lack of coordination and prescriptions made by calculating Defined Daily Doses reversed to match the desire of patients. An educational continuity of care (Kingsbury, 2005). In addition, (D.D.D.) per million inhabitants. explosion by all members of the palliative care service ethical dilemmas with over/under use in provision of Results: In the studied hospitals, the most prescribed was required to change the culture across all healthcare care could result in potential abuse and neglect as well opioid of the third step of the WHO analgesic ladder is settings and was subsequently undertaken. as unwanted physical and emotional distress to the the transdermal fentanyl (5.61 D.D.D. in 2006 in Results: By the end of 2008 this educational initiative patient/ family and the interdisciplinary team. Two case Hospital Universitario de la Paz and 3.51 D.D.D. in the and use of these tools has reversed the trend in place of studies will be presented to highlight the significance of Hospital Universitario de la Princesa), followed by death and we are now seeing an increase in home forwarding timely referrals to the palliative care team. morphine (4.49 and 29.54 but this last data is masked deaths, a reduction in hospital deaths and a critical References: by the figures of the Pain Unit and Anesthesiology) and mass of healthcare staff having received palliative care Australian Bureau of Statistics, 2006. Available from meperidine (0.44 and 0.13). education. www.abs.gov.au Last accessed on 20th May, 2008. Conclusion: Our data reflect the increase in Conclusion: This poster displays the detail of the Center to Advance Palliative Care. Available from consumption of opioids, despite declining morphine. It educational initiatives and the numbers of health www.capc.org Last accessed on 5th May, 2008. is noteworthy that transdermal fentanyl is the largest professionals who had been reached, along with the Kingsbury, L. A. (2005). Person centred planning in the opioid prescribed. use of the Vigil Pathway across all healthcare settings, communication of end-of-life wishes with people who the changes in place of deaths figures and the uptake of have developmental disabilities. Exceptional Parent the Gold Standards Framework. 34/11:44-46. PE 1.F184 RN. 2007 Dec; 70(12): 22. Survival of patients referred to a palliative care PE 1.F180 service in Sheffield, England PE 1.F182 Prescribing in pink! Development of a specific Hirst B1, Noble B1 ‘end of life’ hospital inpatient prescription sheet Indications for palliative medicine consultations 1Sheffield University, Academic Unit of Supportive in the emergency department - A retrospective Care, Sheffield, United Kingdom Groves K E1, Walker S2, Groves S A3 case series 1West Lancs, Southport & Formby Palliative Care Background: It is important to define patients with a Services, Palliative Medicine, Southport, United Guyer C1, Vanapalli H B1, Estrine K M2, London K S3, short prognosis in order to facilitate service planning Kingdom, 2Southport & Ormskirk NHS Trust, Waselewsky D4, Campbell M5, Zalenski R4 and allow patients and their families to plan for the Medicine, Southport, United Kingdom, 3Southport & 1Wayne State University / Detroit Receiving Hospital, future. The evidence is that physicians are poor at Ormskirk NHS Trust, Specialist Services, Southport, Emergency Medicine, Detroit, United States, 2Wayne predicting survival. Part of the difficulty is that however United Kingdom State University / Sinai-Grace Hospital, Emergency good the prediction is, individual survival is a sessions Medicine, Detroit, United States, 3Wayne State probabilistic event. Examining the features of a Background: Following an audit of the timeliness of University School of Medicine, Detroit, United States, population with regard to its survival may help better

(Friday) prescribing of ‘as required’ drugs for the symptoms at 4Wayne State University / Sinai-Grace Hospital, planning. end of life which had been undertaken in a specialist Palliative Emergency Medicine, Detroit, United States, Aim: To analyse features of a population referred to 5

Poster palliative care unit (SPCU), community and acute Wayne State University / Detroit Receiving Hospital, Palliative Care Services in order to better describe hospital setting, it was clear that timeliness of Palliative Care and Clincal Ethics, Detroit, United States individual probability of survival. prescribing was less certain in the community and Method: Service evaluation involving analysis of data acute hospital setting than in the SPCU.(Whitfield et al Although hospice and palliative medicine is the fifth from referrals made to Palliative Care services at the 2007) Preprinted labels, for sticking on to community and newest subspecialty approved by the American Northern General Hospital in Sheffield between drug administration sheets, were already being piloted Board of Emergency Medicine, there is no published 7/5/2002 and 29/3/2007. Patient variables included successfully in the community and were included in data on the indications for and treatments employed by demographic data and diagnosis while the dependent Vigil Pathway (Liverpool Care Pathway) packs for the palliative medicine consultations (PMC) in emergency variable was survival from first referral to the service. community setting and it was suggested that a similar departments (ED). In this study we characterize patients Data was analysed using SPSS for Windows 14.0 to preprinted sticky label which could be stuck on to receiving PMC and report indications for consultation produce Kaplan-Meier survival curves and compare hospital drug sheets might be made available to be and patient outcomes. differences in median survival. included with Vigil Pathway packs for the hospital. This was a retrospective case series. This study was Results: 75.6% of the 3586 new referrals had a cancer Method: This suggestion was discussed at the acute performed in a large urban ED. Cases were identified diagnosis. These had a median survival of 17 days, hospital Nursing and Midwifery Advisory Group using the inpatient hospice and palliative medicine significantly longer than non-cancer patients at 5 days (NMAG) when concerns were raised at the possible database. Included were patients that received a PMC in (p<0.001). Other factors that were associated with better mishaps which might occur if the labels were not used the ED. Patients were excluded if they expired prior to prognosis included age and female gender and correctly e.g. signed by prescriber before being stuck initiation of the consultation. diagnosis (p<0.001). 32% were dead within a week of onto the patient’s drug sheet, stuck on to the wrong During the study period, 44 patients received PMC and referral, but 9.4% were still alive at 180 days. drug sheet etc. A new suggestion was made that 38 of these had available data. The mean age of the Conclusions: Although for many of our patients producing a new hospital inpatient prescription sheet patients was 76 years (range 43-100 years, standard survival is short, their risk of dying decreases with time. the same colour as the Vigil Pathway document (pink) deviation (SD) 16.2), 61% women; 68% African This variation need to be accommodated in clinical would both differentiate it from the current hospital American, 24% Caucasian, 8% other. The most services for end of life care. drug sheets (blue), and ensure that only the drugs common clinical presentations were 45% altered considered necessary to be continued were then mental status, 39% dyspnea, and 8% weakness. prescribed along with the ‘as required’ drugs since the Terminal diagnoses were identified as 34% cancer, 26% new sheet would have to be rewritten. This suggestion dementia, 18% organ failure, and 22% other. 29% (95%

86 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday)

PE 1.F185 PE 1.F187 PE 1.F189

Home Care Support Team in Barbastro at the Specialised palliative care in Sweden - A needs Prevalence of anaemia in cancer patients first year of activity assessment based on the Swedish palliative care receiving palliative care directory and the Swedish cause of death register Zamora Mur A1, Zamora Catevilla A2, Alonso L1, Alarcón J3, Osprian I1, Schippinger W2, Samonigg H1 Laborda A B2, Jordá P4, González E5, Florián J6, Bueso P6 Fürst C J1, Sauter S2 1Medical University Graz, Department of Oncology, 1Hospital San Juan de Dios de Zaragoza, ESAD 1Stockholms Sjukhem, Oncology-Pathology, Karolinska Graz, Austria, 2Medical University Graz, Division of Barbastro(HCST), Huesca, Spain, 2Hospital de Barbastro, Institutet, Stockholm, Sweden, 2National Council for Palliative Medicine, Graz, Austria Huesca, Spain, 3Fundación Ozanam, Geriatric, Palliative Care, Stockholm, Sweden Zaragoza, Spain, 4Hospital San Juan de Dios de Aim: Anaemia is a common condition in patients Zaragoza, ESAD Sector I Zaragoza, Zaragoza, Spain, Aim: To describe the provision of specialised palliative suffering from advanced cancer and might contribute 5Hospital San Juan de Dios de Zaragoza, Palliative care in Sweden in relation to needs as expressed by to other symptoms e.g. fatigue. Therefore, anaemia has Hospitalization Chief, Zaragoza, Spain, 6Hospital de mortality statistics. negative effects on the patients’ quality of life. The Barbastro, Oncology, Huesca, Spain Background: The provision of specialised palliative prevalence of anaemia in palliative care populations care in Sweden, with 9 million inhabitants and a has not been well investigated yet. The aim of this Aims: To describe the activity of the Home Care population density from 0.24 - 4 200 inhab/km2, has retrospective study is to explore the prevalence of Support Team (HCST) of Barbastro (Spain) and the developed in spite of a lacking national strategy. The anaemia in a palliative care unit over a period of 21 characteristics of the patients at the first year of activity. Swedish cause of death register provides statistical month. Methods: Descriptive prospective study. information of mortality. A majority of dying patients Methods: Data of 330 patients with advanced cancer, Measurements: age, sex, principal caregiver, Barthel, have some needs of specialised palliative care during at the time of their first admission to a palliative care Karnofsky, patients derivation, derivation motive, end the last year of life. unit within the defined period, are being evaluated. attention motive, symptoms (pain, dyspnea, anxiety, Methods: Based on the directory in 2008 the number Sex, age, tumour type, time interval from last depression, insomnia, anorexia, nausea, psicomotricial of available beds in spec palliative care in each county chemotherapy and the red blood cell count parameters agitation), number of visits, chase time, was calculated. Also, based on the Swedish cause of haemoglobin (Hb), mean cellular volume (MCV) and pharmacological actuation. death register, 2005, the total number of adult deaths mean cellular haemoglobin concentration (MCH) are Results: N=199. Mean age: 77´6 years (50%>80 years). and the total number of adult cancer deaths were documented and investigated. Man 59%. Principal caregiver: 33% spouse, 26% calculated for comparisons between counties and Results: Results of 229 patients (109 male, mean age 67 son/daughter, 20% nurse home, 3´5% nobody, 17´5% number of available palliative care beds. ± 11; 120 female mean age 65 ± 13) showed 166 (72,5%) others. Mean previous Barthel index 71, mean Barthel Results: The total number of palliative care services in of the patients analysed with anaemia of some type of index and mean Karnofsky at first visit are respectively Sweden were 152 (in-patient 82, home care 72). The severity. 16 patients showed severe (Hb<8 g/dl), 72 44´5 and 48.Patients derivation: Primary attention 44%, number of beds were 744 and 2 612, respectively. The moderate (Hb 8-10 g/dl) and 78 mild (Hb 10-12 g/dl) specialities 38%, other 18%. Derivation motive: 68% total number of specialised palliative care beds varied anaemia. There was no statistically significant oncology, 16% geriatric, 9´5% psychiatric, 4´5% between the 21 different counties from 0 - 1 088 (total 3 difference in the prevalence of anaemia between female neurological, 2% other. End attention motive: stability 356). The range of beds per 1 000 deaths was 0-76, for (91 with anaemia, 75,8%) and male (75 with anaemia, 36´4%, die 48%, hospitalization 15´7%. Presence of the whole country 37. The number of beds in relation 68,8%) patients. symptoms: pain in 47%, dyspnea 30%, anorexia 56%, to the number of cancer deaths followed a similar Further analyses of the data is still ongoing and will anxiety 30%, depression 33%, insomnia 35%, nausea pattern. consider causes of anaemia and correlations between 19%, psicomotricial agitation 20%. Mean number of Discussion: Specialised palliative care lack an agreed frequency and severity of anaemia, and time interval visits 2´5+/-1´9. Mean chase time 45´5 days. on definition which is a limitation to the directory from last anti-tumour therapy, tumour type, sex and Pharmacological actuation (new prescription): major which may be over estimating the existing number of age of the patients. opiate 36%, minor opiate 6%, benzodiazepine 34%, beds. The provided information of unacceptable Conclusion: The findings of this study demonstrate antidepressant 25%, neuroleptic drugs 40%, nutritional inequity of palliative care resources puts pressure on that anaemia is a very frequent issue in patients with supplementation 33%, corticoid 14%, sedation 20%. authorities to deliver a national palliative care strategy. advanced cancer receiving palliative care. Final results Conclusions: will include data of 330 patients and will be presented 1. There is an important functional decline in the at the congress. patients and partial control of symptoms in our first PE 1.F188 visit. An earlier attention could be beneficial to the chase of the patients. Chronic renal insufficiency in palliative care: PE 1.F190 2. The big number of derivations provokes that its Possible impact on drug excretion decrease the number of visits to the patients, so we The Japan HOspice and Palliative care Evaluation need another HCST to maintain the same activity with Schippinger W1, Osprian I2, Eisner F1, Samonigg H2 study (J-HOPE study): Views about legalization of appropriate quality. 1Medical University Graz, Division of Palliative death with dignity and euthanasia among the Medicine, Graz, Austria, 2Medical University Graz, bereaved - Those who have experienced the death Department of Oncology, Graz, Austria of a family member at a palliative care unit PE 1.F186 Aim: Impairment of kidney function has a major Okishiro N1, Goya S2, Tsuneto S2, Miyashita M3, Shima Y4 The care pathway at the end of a cancer patient’s impact on the efficacy of renal drug excretion. 1Gratia Hospital, Hospice, Mino, Japan, 2Osaka life However, little is known about the prevalence of University Graduate School of Medicine, Department of impaired kidney function in patients receiving Palliative Medicine, Suita, Japan, 3School of Health Ottolini L1, Franchini S2, Destro M1, Battisti L2 palliative care. The aim of this retrospective study is to Sciences and Nursing, Graduate School of Medicine, 1Servizio Cure Palliative, Trento, Italy, 2Servizio investigate the prevalence of impaired renal function in The University of Tokyo, Department of Adult Osservatorio Epidemiologico APSS, Trento, Italy patients admitted to a palliative care unit over an Nursing/Palliative Care Nursing, Tokyo, Japan, observation period of 21 months. 4Tsukuba Medical Center Hospital, Department of Introduction: In 2007, there were 1460 deaths due to Methods: Data of 330 in-patients at their first Palliative Medicine, Tsukuba, Japan cancer in the Province of Trento (450.000 residents). admission to our palliative care unit in the defined time The amount of deaths that occurred at home was period, all suffering from advanced cancer, will be Aim: To demonstrate attitudes of the bereaved whose 27,5%. Only 34,9% of these patients were not admitted evaluated. Renal function is monitored by use of the family members died at palliative care units towards the to a hospital during the final 60 days of their life, while glomerular filtration rate (GFR), estimated by the legalization of death with dignity and euthanasia. 35,5% were admitted to a hospital for at least 15 days Modification of Diet in Renal Disease (MDRD) formula. Methods: This is part of large nationwide study, the J- sessions and 21,6% were hospitalized at least two times during Additionally, serum creatinine, sex, age, tumour type, HOPE (Japan HOspice and Palliative care Evaluation) the same period. 30% of these patients received care and time interval from last chemotherapy are study. A questionnaire was mailed to 661 bereaved and (Friday) from palliative care services, for an average period of documented and evaluated. 429 valid answers were collected (response rate 65%).

care of 45 days with death occurring at home in more Results: A GFR < 80 ml/min/1.73 m2 was defined as The questionnaire consisted of two parts: the first Poster than 80% of the cases. impaired renal function. Results from 229 patients (109 included general questions to acquire background Aim: One of the main objectives of palliative care is to male, mean age 67 ± 11; 120 female, mean age 65 ± 13) information and the second was about the attitudes provide care for patients in their own home therefore show 127 of the analysed patients (55.5%) with towards two end-of-life options, death with dignity and avoiding hospitalization: to ensure care continuity at impaired renal function, 68 of them with a GFR < 50 euthanasia. The respondents were asked to choose one the end of life in order to avoid inappropriate and ml/min/1.73 m2. There is no statistically significant from the following choices: improper circumstances. The objective of the study is to difference (chi-square test) in the prevalence of (1) the options should be legitimated, assess if and to what degree this objective was reached impaired kidney function between female (72, 60.0%) (2) the options should be assigned to the discretion of by investigating if care provided by palliative care and male (55, 50.5%) patients. attending physicians and services was able to influence the care pathway of the Further analysis of the data is still ongoing and will (3) the options should be prohibited. final 30 to 60 days of a patient’s life by significantly consider tumour type, sex, age and the time interval Results: 223 bereaved (52%) approved the legitimacy modifying, or not, the need to be admitted into a from last chemotherapy. of death with dignity and 160 (37%) chose to delegate hospital. Conclusion: Results of this study demonstrate that the decision to attending physicians. Only 12 Materials and methods: The analysis of the impairment of kidney function is frequent in cancer respondents (3%) were against the legitimacy of death epidemiological data, regarding cancer patients that patients receiving palliative care. Final results will with dignity. The younger (< 60 year-old) bereaved, died in 2007, compared to data regarding patients that include data from 330 patients and will be presented at excluding the patients’ spouses, supported the died while receiving care by palliative care services. the congress. legitimacy of death with dignity significantly. The Assessment of a diverse incidence of hospital proportion of attitudes towards euthanasia was similar. admittance, the length of hospital stay and the manner 192 bereaved (45%) approved the legitimacy of in which death occurred. euthanasia, 161 (38%) chose to delegate the decision of Discussion and conclusion: The data gathered and euthanasia to attending physicians and 26 (6%) processed, document a significant increase in the disagreed with the legitimacy of euthanasia. The number of cases taken into care by a palliative care respondent characteristics, which affected the choices service on the care pathway during the last 30 to 60 significantly, were age and relationship with the days of a cancer patient’s life. patients. Conclusion: Most of the bereaved supported death

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 87 Poster sessions (Friday)

with dignity and euthanasia as possible options for PE 1.F193 PE 1.F195 end-of-life moment. However, care must be taken to interpret these results because the views on the two Presence of advance directives in cancer patient Terms and concepts used by ill and healthy distinct options were so similar, which might suggest with metastatic spinal cord compression people in interviews on advance directives some confusion over the terms. Guo Y1, Bianty J R1, Palmer L J1 Jaspers B1, Becker M2, King C1, Klaschik E2, Radbruch L3, 1MD Anderson Cancer Center, Palliative Care and Voltz R4, Nauck F1 PE 1.F191 Rehabilitation, Houston, United States 1University of Goettingen, Palliative Medicine, Goettingen, Germany, 2University of Bonn, Centre for Islamic views on death and dying Aims: Advance directives (or living wills) serve to Palliative Medicine, Malteser Hospital Bonn/Rhein-Sieg, communicate the wishes of individuals in the event Department Science and Research in Palliative Baddarni K1 that they should no longer be capable of making those Medicine, Bonn, Germany, 3University of Aachen, 1Al-Taj for Health and Heritage, Home Hospice, Arraba, wishes known. This can include directives on issues Clinic for Palliative Medicine, Aachen, Germany, Israel such as resuscitation status and withdrawal or 4University of Cologne, Clinic and Policlinic for withholding of care. The goal of this study is to Palliative Medicine, Cologne, Germany Muslims: Worldwide every sixth person is a Muslim, determine at a catastrophic event such as metastatic are a culturally diverse group, regionally dispersed and spinal cord compression, whether advance directive is Background: It has been widely discussed that it can posses various degrees of religious beliefs. present in patient´s medical record. be difficult to extract a patient’s true wishes for end-of- Islamic views: The Islamic Sharia (law) rules are: Methods: Research was conducted through life care (EoLC) from his advance directive (AD.) A Obligatory - the five pillars: confession, prayers, fasting, retrospective review of 93 charts of cancer patients with current study in 20 healthy (H), 20 chronically ill (CI) almsgiving and pilgrimage; metastatic spinal cord compression who required and 20 people that receive palliative care (PCP) explores Recommended - blood and organ donation, physical medicine and rehabilitation consult, which what people really want to express, using a mixed circumcision and human tissue bank; indirectly indicate function decline from baseline. The method approach. This section of the study aims to Permitted - DNR order, withdrawal and withheld study was performed in a tertiary cancer center. analyse the role of terms that are frequently used in therapy, autopsy, reconstructive surgery, contraception Result: The mean age of this patient population is 54 interviews about people’s own AD. and reproductive technology; (range 14-81) year old. Thirty three percent of patients Methods: A focus group of experts in palliative care Discouraged - forced feeding, smoking and divorce; & are female. Our results show that among all patients identified the most important semantic topics in the Forbidden - abortion, surrogacy, surgical contraception, with metastatic spinal cord compression and required literature and public debate on AD and compiled key sperm and ova donation, fetal sex determination, physical medicine and rehabilitation consult, only 24% terms. Frequency analysis of these terms was conducted human cloning, alcohol and pork meat. had identified medical power of attorney, only 19% had in transcribed interviews, including related term Islam and palliative care: The palliative team should living will, and only 4% had “Do Not Resuscitate” variations. be responsive to religion when providing care, to request. Results: Fourteen interviews (6 H, 7 CI, 1 PCP; mean ensure trust and ongoing patient cooperation. The Conclusion: Even with strong evidences showing the age 64.2 (55-70) y; 5 males) with a mean length of dying patients are expected to seek God’s help with median life span of MSCC patients is 5 months, it 24:46 (16:18-32:50) min were analysed. patience and prayers. The Imam (Cleric) plays a vital seems many patients are not aware of the urgency to Semantic fields identified in the focus group were fear, role and provides spiritual guidance during illness; have an advance directive. Further research is needed to suffering, trust, will/autonomy, technical device, prepares the body for burial; and encourages the sort out the reasons for the lack of advance directives; dignity, pain. Whereas fear (hits: 0 in H, 3 in CI, 7 in grieving family to be calm because “the dead is tortured which could be due to lack of clearly informing patient PCP), suffering (6 in H, 4 in CI, 0 in PCP), trust (7 in H, by the crying of the living.” of their prognosis from physician, or due to patients’ 6 in CI, 0 in PCP) and dignity (10 in H, 9 in CI, 1 in The Muslim patient understands that illness and denial. PCP) play a minor role, technical device (11 in H, 24 in suffering are part of life and death is part of a journey to CI, 11 in PCP), pain (12 in H, 24 in CI, 2 in PCP) are meet God, “every soul shall taste death.” Death is used more frequently. Trust was mostly used when predetermined by God; therefore suicide and active PE 1.F194 describing a proxy, pain in the context of pain free euthanasia are condemned. Treatment is not obligatory dying and most important wish for EoLC. Technical when there is no hope of survival (passive euthanasia). The attitudes of Indian palliative-care nurses devices were not specified (terms used: machine, When brain death occurs, switching off the life support and physicians toward voluntary euthanasia apparatus). Most interestingly, there was only one hit is permissible, but the patient should be provided with for terms in the field of will/autonomy in ill people (18 food, drink, and pain relief until death. Gielen J1, Gupta H2, Rajvanshi A2, Bhatnagar S3, Mishra S3, in H, 1 in CI, 0 in PCP). Conclusions: Islam is the second largest religion, fast Chaturvedi A K4, Van den Branden S1, Broeckaert B1 Conclusions: It seems that a frequency analysis can be growing with a worldwide distribution and there is a 1Catholic University Leuven, Interdisciplinary Centre used to identify differences between healthy and marked increase of the prevalence of cancer in this for the Study of Religion and World View, Leuven, chronically ill people with regard to their concepts of community. Awareness, sensitivity and respect of the Belgium, 2CanSupport, New Delhi, India, 3All India EoLC. First results suggest that terms in the semantic Muslim patient’s values and beliefs are vital for Institute of Medical Sciences, Institute Rotary Cancer field of autonomy may have a different importance. effective, end-of-life, spiritual care. Hospital, New Delhi, India, 4Rajiv Gandhi Cancer Results with inclusion of more interviews will be Institute and Research Centre, New Delhi, India presented. Funded by German Research Foundation, no. NA PE 1.F192 Aims: In Western countries several studies have been 780/1-1. conducted surveying the attitudes of palliative care Palliative care research in developing countries: physicians and nurses toward voluntary euthanasia. In Ethical deliberations and practical solutions India no such study has been conducted. We wanted to PE 1.F196 explore the attitudes of Indian palliative care physicians Jack B A1 and nurses toward voluntary euthanasia. We also On being disproved in decisions of life and death 1Edge Hill University, Faculty of Health/Evidence-based wanted to know how these physicians and nurses Practice Research Centre, Ormskirk nr Liverpool, substantiate their point of view regarding this issue. Schuler U S1, Schütte K1 United Kingdom Methods: We opted for an explorative research design 1University Hospital Carl Gustav Carus, Department of based on 27 semi-structured face-to-face interviews Medicine I and Palliative Care Unit, Dresden, Germany Background: There is a growing need for palliative following Grounded-Theory methodology (Glaser & care research in developing countries to evaluate Strauss). 14 physicians and 13 nurses were interviewed Decisions on offering/discontinuing treatment for initiatives and identify areas for expansion of services. from May to September 2008. At the time of the cancer patients are usually the result of team sessions However it is acknowledged that undertaking palliative interview all respondents were working in different discussions. After taking individually a firm standing care research is not without both practical and ethical palliative care programmes in New Delhi (palliative- for discontinuation, patients may nevertheless

(Friday) dilemmas due to the vulnerable population involved. care ward, home care, hospice, pain clinic). occasionally receive therapy contrary to ones intention Within the western world there are formally established Results: No nurses were found to support voluntary and present with a meaningful outcome. Five cases are

Poster research ethics processes that act to provide quality euthanasia. Five (out of 14) physicians argued in favour discussed and the underlying ethical issues are mechanisms and to protect participants. In developing of voluntary euthanasia. Putting an end to suffering presented. countries there are limited formal systems in place, and saving scarce resources were arguments mentioned 1) A 58year old lady suffered blast crisis of CML coupled with low literacy rates that may prevent truly each by three physicians to defend voluntary complicated by aspergillosis in induction independent informed consent and could potentially euthanasia. The main arguments against voluntary chemotherapy in 1997. In a heated discussion unrelated result in exploitation. It is widely accepted that the key euthanasia were the fact that voluntary euthanasia is BMT was finally decided to be offered, which the principles inherent in undertaking research in illegal in India (10 respondents), the conviction that patient survived in good condition (still in fairly good developing countries include the duty to alleviate human life is given and therefore humans should not health in 2008). suffering, to show respect for people and to avoid take life (11 respondents), and a strong belief in the 2) A lady of 60 years with OMF with Lille-score of 2 was exploitation of the vulnerable. Although the Nuffield effect of good palliative care (13 respondents). advised against SCT due to the inherent risks. However Council on Bioethics provides guidance regarding Conclusions: The majority of the respondents do not she chose to move to another centre, is alive and well 2 clinical research that clearly highlights issues for support voluntary euthanasia. The general opinion is years after SCT. consideration, in particular surrounding gaining that euthanasia requests disappear as soon as symptoms 3) A 57-year old male with multiple myeloma had informed consent, there is limited guidance available are treated adequately, and that pain can be effectively sepsis, pseudomembranous colitis and MOF, when all for palliative care researchers on the practical controlled in (nearly) all cases. Those who do support involved ICU experts voted for discontinuation. Being implementation of key ethical principles. voluntary euthanasia argue euthanasia is only still alive on a ventilator after 24h without vasopressors, The aim of this paper is to discuss how palliative care permissible after offering good palliative care. Among full ICU-therapy was resumed and survived for >4 years. researchers can transfer good practice surrounding nurses the lack of support to euthanasia may be 4/5) Two young patients with far advanced colorectal ethical principals to developing countries. Practical explained by their greater acceptance of the idea that cancer were referred to the PCU with limited issues surrounding recruitment, obtaining informed life has been given to man, and should not be taken by performances status for bowel obstruction or consent, the use of interpreters, payment for humans. insufficient pain control respectively. In both cases participants and the role of the researcher once the Funds: Faculty of Theology (KUL) & VLIR-UOS cetuximab based chemotherapy could be reinstituted project is completed will be discussed. Examples from and led to a partial response and good quality of life for palliative care research undertaken in sub-Saharan several months. Africa will be given to illustrate examples of good When one of these cases 3) was presented on a meeting ethical practice. in the intention to explain oncologists’ hesitation to

88 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) discontinue treatment, a participating palliative care palliative sedation as acceptable from ethical point of Computerised data were analysed descriptively. physician meant to invalidate the argument by the view. This is also not a form of euthanasia. We do not Results: The ethics checklist was completed for 779 of phrase “But honestly, how frequently does this use this method for psychological and spiritual distress. 1903 (in 2005) and 1018 of 2846 (2006) documented P. happen?”. The validity of this argument is challenged Whereas the prevalence of all documents increased by reflecting upon the differences in the everyday- considerably in IH, it remained rather stable in PCU: experience of palliative care for physicians and PE 1.F200 AD (IH 24.5/30.7%; PCU 20.5/18.1%); DPA (IH oncologists. Another relevant question may be “how 3.9/17.4%; PCU 16.6/13.0%) and AR (IH 6.9/12.5%; frequently may I err in such a question and withhold a The setting of advance directives in Germany: PCU 8.4/8.6%). An additional DPA was prepared for relevant gain from a patient in good intention?” The patients’ views 60.9/52.2% of P with AD in PCU and 8.0/42.0% in IH; an additional AR for 22.7/26.6% of P with AD in PCU Becker M1, Jaspers B2, Klaschik E3, Radbruch L4, Voltz R5, and 12.0/30.7% in IH. The correlation of AD plus DPA PE 1.F198 Nauck F2 at the time of admission in both settings was highly 1University of Bonn, Dept. Science and Research in significant (Cramer-V .534; p= 0.000/.587; p= 0.000). All The importance of social support in decision Palliative Medicine, Centre for Palliative Medicine, 3 documents were given for a minority of P in both making regarding terminal care: What ALS Malteser Hospital Bonn/Rhein Sieg, and University of settings: 3.8% in 2005, and 4.7% in 2006. Not all P with patients in Japan can teach us Goettingen, Department of Palliative Medicine, Centre AD were fully informed about diagnosis (2006: 93.3% for Anaesthesiology, Emergency and Intensive Care in IH; 94.3% in PCU) and prognosis (2006: 80.0% in IH, Hotta Y1, Arima H2, Abe A2, Matoba K2 Medicine, Bonn, Germany, 2University of Goettingen, 85.2% in PCU). 1Japan Society for the Promotion of Science / Palliative Medicine, Goettingen, Germany, 3University Conclusion: Even though there is a significant Ritsumeikan University, Kyoto, Japan, 2Ritsumeikan of Bonn, Centre for Palliative Medicine, Malteser correlation of the recommended combination of University, Kyoto, Japan Hospital Bonn/Rhein-Sieg, Department Science and documents in PC patients with an AD, the overall Research in Palliative Medicine, Bonn, Germany, prevalence of AD plus DPA in PC patients is low. In this paper we shall first point to a common 4University of Aachen, Clinic for Palliative Medicine, assumption among physicians, lawyers, and ethicists Aachen, Germany, 5University of Cologne, Clinic and with regard to the QOL (quality of life) of severely Policlinic for Palliative Medicine, Cologne, Germany PE 1.F202 disabled people: namely, a severe disability itself renders a person’s QOL very low. This assumption was Background: It has been widely discussed how A support group programme for relatives during especially made clear in the recent legal controversy of difficult it can be to extract a patient’s true wishes for the late palliative phase Mr. Leslie Burke [R (Burke) v. GMC (2005) 3 FCR 169]. end-of-life care (EoLC) from his advance directive (AD). We shall demonstrate how the assumption colored the There is no evidence to which extent ADs are suited to Henriksson A1 judges’ opinions in the court, newspaper articles about deliver unambiguous information about a person’s 1Örebro University, Heath Academy, Örebro, Sweden the case, and the published opinions of various interest wishes for EoLC. This study, through a mixed method groups on the case. The same assumption is also often analysis of the instrument AD, aims to identify key Introduction: This study describes an intervention seen in the way medical ethicists refer to the case when problems that are relevant for the public, judicial and where relatives were invited to take part in a support writing on the issue of decision making regarding the practical discourse. group programme during the late palliative phase of terminal care. Methods: their family member. The group meets for an hour and In order to counter this assumption we shall describe 1. Semi-structured interview (INT) guideline, covering a half a week for six weeks, and each meeting has a the lives of ALS patients in Japan. While many of these aspects such as motivation for writing an AD, wish specialtheme with an ´expert´ invited by the pallative patients have severe disabilities (i.e., they have barely for/rejection of interventions, personal values, proxy, team. The aims of the meetings are to offer relatives a movable body hooked up to a respirator), it does not diseases, prognosis, emergencies, advice/advisors. chance to meet others in a similar situation, obtain seem that they necessarily feel their QOL is low. Rather, 2. Semantic and value analysis of AD in order to information and discuss their situation with when there are sufficient social services and technical facilitate a comparison of AD and content of INT. professionals. support to assist their daily activities, many ALS patients 3. Triangulation. INT with 20 healthy (H), 20 Aim: The aim was to describe their experiences of the show their ability to adapt themselves to their physical chronically ill (CI) and 20 persons receiving palliative support group programme and the subsequent impact disability and begin to enjoy their lives. We shall argue care (PCP). on their lives as relatives of a terminally ill person. that it is mainly from the healthy and able person’s Results: First results from the quantitative part of the Method: Qualitative interviews were chosen as the point of view that the life in an immovable body would study are presented. Seventeen INT (H 8, CI 8, PCP 1/6 data collection method. The analysis was inspired by look poor and misery. Physical disability does not itself male/ mean age 64.4 years (55-70 years)) with a mean the phenomenological method as described by Giorgi render a person’s QOL low. The QOL felt by the people length of 24:14 (15:05-32:50) min were analysed. (1989). with severe disability is strongly dependent on the Experience with death and dying of family members Result: The relatives´ experiences were categorised into quality and quantity of the social support services. (FM) is the most frequent motivation for writing an AD six key constituents: confirmation; insight into the (63.9%). In INT where this motivation was mentioned, gravity of the illness; sense of belonging created by talking about it took 8.8% of the total INT length (4.8% similar experiences; participation in the care system; PE 1.F199 in other INT). The majority (88.2%) used prepared AD being able to rest; and strength to provide support for forms and did not seek any medical or legal advice the patient. These six constituents resulted in a sense of Palliative sedation in palliative care unit - Own (64.7%). In case of advice, it was rather given by FM safety in relation to the patient, the illness, the nursing experience (17.6%) or legal professionals (11.8%) than by staff and the care unit. physicians (5.9%). Contact persons named in AD were Conclusion: The study´s findings show that Stypula-Ciuba B1, Jarosz J1, Goraj E1, Tomaszewicz E1, FM (82.4%); few gave contact details of their GP interventions of this kind may be integral to the Chmielarczyk W2 (17.6%). AD of CI and PCP contained no disease- relatives´ ability to handle their situation when caring 1M. Sklodowska-Curie Memorial Cancer Centre and oriented instructions. for a terminally ill family member. Institute of Oncology in Warsaw, Department of Conclusions: First identified key problems are lack of Palliative Medicine, Warsaw, Poland, 2M. Sklodowska- involvement of physicians as advisors for ADs and of Curie Memorial Cancer Centre and Institute of disease-oriented instructions in ADs. Relevance for PE 1.F203 Oncology in Warsaw, Warsaw, Poland discourse will be judged after substantiation of the results through inclusion of more interviews. Career satisfaction in palliative care nursing: Introduction: Palliative sedation is accepted as Funded by German Research Foundation, no. NA Implications for staff retention treatment method in case of unbearable suffering 780/1-1 (pain, dyspnea, psychological distress), which cannot Perry B1 be controlled by other methods. The method become 1Athabasca University, Center for Nursing and Health sessions more and more popular. PE 1.F201 Studies, Edmonton, Canada

The goal: Evaluation of application of palliative (Friday) sedation in our Department (OD) in 1995 - 2008. Advanced directives in palliative care - A Worldwide there is concern regarding the existing and

Material and methods: The retrospective analysis of prospective representative survey in Germany projected scarcity of palliative care professionals. Poster the cases of palliative sedation (frequency, indications, Without an adequate workforce patient care is seriously patient’s consent, technique). Jaspers B1, Nauck F1, Ostgathe C2, Krumm N3, Radbruch L3, compromised. This international study focused on Results: Sedation was used only in 4 cases. Common HOPE Working Group nurses and aimed to determine what contributes to indication was an unbearable pain, uncontrolled with 1University of Goettingen, Palliative Medicine, career satisfaction of palliative care nurses who are other methods. In one case (mesothelioma) coexisted Goettingen, Germany, 2University of Cologne, Clinic registered nurses (RNs). With this knowledge dyspnoea. and Policlinic for Palliative Medicine, Cologne, workplaces can be designed to enhance career In two cases the “entry” into sedation state occurred Germany, 3University of Aachen, Clinic for Palliative satisfaction and retention of RNs. unintentionally (escalation of pain treatment - infusion Medicine, Aachen, Germany An interpretive research design, based on of analgesics). In these cases, after successful phenomenology, was used to capture a description of stabilization the patient was woken up to gain their Background: In Germany there is an ongoing debate RNs experiences of career satisfaction. The research opinion and an consent for continuation. on need and potential scope of a new law on advance question was: What provides palliative care nurses with Drugs used for sedation: morphine, ketamine, directives (AD). Members of Parliament and others career satisfaction and what gives them impetus to midazolam, propofol. prepared different draft bills; a number of political continue in this field? To answer this question, nurses In two cases, patients received total parenteral nutrition actors, e.g. the German Medical Association or German were asked to recall moments when they were satisfied mainly due to family’s request. Two patients- one after Association for Palliative Medicine recommend the that they had chosen the ‘right’ career and to write a 3 and second after 5 days were excluded from sedation combination of AD with durable power of attorney for narrative to describe this time. A web-based data- because the pain become controlled without keeping health care (DPA). The aim of the study is to assess the collection method was developed to solicit and receive sedation. These patients continued palliative care and prevalence of AD in combination with DPA and/or submissions from an international sample of 89 nurses. treatment in oncological departments. appointment of legal representative for health care (AR) Entries came from North America and Europe. 2 patients died after 11 and 15 days of sedation - 2008. in different settings in palliative care. Narrative analysis identified themes. Additional Conclusion: Palliative sedation is very rarely used in Methods: The Hospice and Palliative Care Evaluation analysis used photographic and poetic interpretation. OD. It is presumably caused by easy access to complex (HOPE) was supplemented with a checklist on ethical To achieve validation, continuing email dialogue with oncological and palliative treatment with relatively decision-making in two evaluation periods in 2005 and some study participants occurred. Study limitations effective symptom control. The medical staff also is 2006 for patients (P) treated in inpatient hospices (IH) were need for computer access and fluency in English. being reluctant to this treatment. However, we value and palliative care units (PCU) in Germany. Ethical approval was obtained.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 89 Poster sessions (Friday)

The major finding of this study was that RNs who single session therapy, principles of therapeutic comparison studies that evaluate an intervention aimed perceived they provided high-quality care, made a communication and models of coping and family to improve the caregivers’ psychological, physical difference for others, and made connections with their consultation. A multidisciplinary expert panel refined health, acceptability and knowledge. We will search patients, were satisfied with their careers. A model for the content of the guidelines and the applicability of eight citation databases for evidence, including career satisfaction was developed that illustrates the the guidelines was then assessed via two focus groups of Medline and the Cochrane library. Key stages of the possible relationship between the themes and the multidisciplinary palliative care specialists. The review will be undertaken in duplicate. Meta-analysis living out of core nursing values. complete version of the guidelines is presented. will be considered for evidence from randomised The dominant feature of this model is the cyclical Conclusions: Family meetings provide an opportunity controlled trials that is sufficiently similar. nature of the positive care giving experience. to enhance the quality of care provided to palliative Results: This review will be completed in early 2009. Administrators, educators, and nurses need to design care patients and their family carers. The clinical The review will identify which types of interventions workplaces that facilitate this process to enhance nurse guidelines developed from this study offer a framework have been evaluated and provide the evidence base for career satisfaction and retention for the benefit of for preparing, conducting and evaluating family which intervention(s) may provide greater benefit to patients and nurses. meetings. Future research and clinical implications are caregivers, which are more acceptable, how they are outlined. best delivered and which caregivers may benefit most. Conclusions: The review results will allow us to draw a PE 1.F204 clear picture that highlights what we know about PE 1.F206 effectiveness, what may be more usefully implemented Towards the optimal facilitation of family and where, and what interventions need further meetings in palliative care: A pilot study to A natural experiment: Evaluating new evaluation. evaluate clinical practice guidelines interventions to support carers in the UK

Quinn K1, Hudson P1, Thomas K1, Aranda S2 Payne S A1, O’Brien T1, Ingleton C2 PE 1.F208 1Centre for Palliative Care Education and Research, 1Lancaster University, International Observatory on End Melbourne, Australia, 2The University of Melbourne, of Life Care, Lancaster, United Kingdom, 2University of What can we learn from relatives of recently Melbourne, Australia Sheffield, Centre for Health & Social Care, Sheffield, deceased persons to improve end of life care? United Kingdom Despite the promotion of family meetings as an Remacle A1, Gielen B1, Mertens R1 essential tool for information sharing and planning in Background: Carers have a central role in supporting 1Landsbond Christelijke Mutualiteiten (Christian palliative care, minimal evidence exists to demonstrate patients with advanced disease throughout their illness Sickness Funds), Brussel, Belgium their effectiveness. We sought to rectify this gap in and towards the end of life. Care giving is demanding evidence based practice by evaluating recently and little is known about the types of intervention Aim: Previous research has indicated that three developed clinical guidelines for facilitating family necessary to support them in their role. quarters of the Belgians prefer to die at home, while in meetings. Aim: Evaluation of 15 interventions designed to practice, this is not the case for the majority of them. Four palliative care nurses were trained to conduct support carers of patients facing the end of life, Apart from the cost and the specific medical situation, family meetings using the guidelines. Family carers delivered by Third Sector organisations, including the availability of adequate home care services and the were required to complete a self-report instrument to hospices, in the UK. supporting capacity of the family also determine the measure unmet needs at three time periods: Method: Help the Hospices, a UK umbrella feasibility of home care at the end of life. The present immediately before the meeting (T1); immediately after organisation, funded 15 different interventions research approaches the subject from the perspective of the meeting (T2); and two days after the meeting (T3). delivered by hospices and Third Sector organisations. the relatives. The objectives of this study are to Additional data sources included phone interviews with An independent longitudinal evaluation used mixed investigate the satisfaction with and the perceived carers and a focus group with the nurses involved in methods to collect data: interviews with (n = 45) service quality of care in situations of end of life in different conducting the meetings. Health professionals who providers, questionnaire data (n = 58) and interviews (n settings; to explore the well-being and the quality of attended the meetings and family meeting facilitators = 14) from carers. Analysis sought to determine the (end of) life; to look at decision processes, concepts of were also invited to complete an evaluation form at T2. benefits, barriers and sustainability of the empowerment and resiliency with respect to cure, care Twenty family meetings were conducted at St Vincent’s interventions. and care pathway decisions. Hospital (Melbourne, Australia). Twenty family carers Results: The interventions delivered included: Methods: A retrospective qualitative study was and eighteen health professionals were involved in the education, information, therapeutic and social support performed. The prevailing array of ideas, opinions, research. Family carers reported a statistically groups, complementary therapies, and respite. preferences and problems related to end of life care significant increase in having their care needs met, Evidence from the service providers revealed difficulties pathway decisions and experiences were collected via from T1 to T2, which was maintained at T3; they also in establishing a temporary new service for which there focus groups of relatives of recently deceased adults. reported that the meetings were informative, was only transient funding, delays in appointing and Participants were recruited by a call for collaboration comfortable and useful. Health professionals advised retaining personnel, and lack of clarity in responsibility disseminated through specific journals. that the meetings were well facilitated and family for service delivery in some cases. For carers, there was Results: Results of 10 focus groups (5 in Wallonia, 4 in focused. high satisfaction with services but overall low uptake. Flanders and 1 in Brussels) will be presented. Relatives The results from this pilot study indicate that family Conclusion: This evaluation represents a ‘naturally identified several conditions that increase the chance of meetings, conducted using clinical practice guidelines, occurring experiment’ which examines different types a ‘good’ end of life. were useful and effective in meeting care needs of of support for carers in the real world. Lack of Conclusion: Key points were information, open family carers. Strategies for implementation and further comparison samples makes it difficult to draw communication at all levels (i.e., within and between research are outlined. conclusions but the advantages of this opportunistic caregivers, family and patient), time management, and approach to evaluation are that it has high ecological a crucial role of the general practitioner. validity and indicates where the challenges and barriers No external funding. PE 1.F205 lie for services.

Family meetings in palliative care: Development PE 1.F209 of multidisciplinary clinical practice guidelines PE 1.F207 Artherapy with young children of patients Quinn K A1, Hudson P l1, O’Hanlon B2, Aranda S3 Interventions for supporting informal caregivers admitted in PCU 1Centre for Palliative Care Education and Research, of patients in the terminal phase of a disease: Research, Melbourne, Australia, 2The Bouverie Centre, Findings from a Cochrane systematic review Rhondali W1, Filbet M1 sessions Melbourne, Australia, 3University of Melbourne, 1Hospices Civils de Lyon, Centre de Soins Palliatifs, Nursing and Social Work, Melbourne, Australia Candy B1, Jones L1, Tookman A2, King M3 Lyon, France

(Friday) 1University College London, Marie Curie Palliative Care Background: Support for family carers is a core Research Unit, Department of Mental Health Sciences, In our PCU, we propose an artherapy activity for the 2

Poster function of palliative care. Family meetings are London, United Kingdom, Marie Curie Edenhall patients but also for their children. During this year, ten commonly recommended as a useful way for health Hospice, London, United Kingdom, 3University College children undertook this activity. care professionals to convey information, discuss goals London, Department of Mental Health Sciences, Aims: This presentation will present the interest and of care and plan care strategies with patients and family London, United Kingdom the specificity of the artherapy with children. carers. Yet it seems there is insufficient research to Methods: The methods are 3 cases studies explaining demonstrate the utlility of family meetings or the best Patients in the terminal phase of a disease may have this activity, the frame of the session, the media used, way to conduct them. This study sought to develop complex care and support needs, and numerous other and the behaviour of participants. multidisciplinary clinical practice guidelines for concerns. Whether the patient is at home or in a This description will be done by a video-movie witch conducting family meetings in the specialist palliative healthcare setting, and despite health professional have been think to be more relevant. care setting based on available evidence and consensus input, it is often family and friends that play a central Conclusion: This original kind of therapy allow based expert opinion. role in providing for their needs and concerns. children to stay near to their parent in difficult time, Methods: The guidelines were developed via the Although such informal caregivers may derive personal and it also provide them a free space to express their following methods: rewards from caregiving, being a caregiver may involve feelings. It s also help the careers, to deeply share (1) A literature review; considerable physical, psychological, economic and emotional time with the patient. (2) Conceptual framework; domestic challenges and stresses. A wide range of (3) Refinement of the guidelines based on feedback healthcare programmes and strategies are being from an expert panel and focus groups with developed and implemented that aim to support multidisciplinary specialists from three palliative care caregivers of patients in the terminal phase. Some of units and three major teaching hospitals in Melbourne, these have been evaluated; however this evidence base Australia. has not been reviewed systematically. Results: The literature review revealed that no Aims: To review systematically the evidence on the comprehensive exploration of the conduct and utility effectiveness of supportive interventions that aim to of family meetings in the specialist palliative care improve psychological and physical health of informal setting has occurred. Preliminary clinical guidelines caregivers of patients in the terminal phase of their were developed by the research team, based on relevant illness. literature and a conceptual framework informed by: Methods: Evidence will be included from controlled

90 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday)

PE 1.F210 PE 1.F212 Conclusion: Spokesperson satisfaction was high, even when death was the outcome, but varied by patient Being a caregiver in Bulgaria Factors affecting agreement between patients factors, caregiver behaviors, and environment. It is and their family caregivers on cancer symptom important to assess satisfaction and make changes to Yordanov N R1 experiences improve the experience for families. 1Interregional Cancer Hospital, Palliative Care, Vratsa, Bulgaria McPherson C J1, Wilson K G2, Lobchuk M M3, Brajtman S4 1University of Ottawa, Ottawa, Canada, 2The Ottawa PE 1.F214 The objectives: To find out the most frequent Hospital Rehabilitation Centre, Ottawa, Canada, problems caregivers of cancer patients face in their 3University of Manitoba, Faculty of Nursing, Winnipeg, Developing a tool for measuring main everyday practice. Canada, 4University of Ottawa, School of Nursing, caregiver´s fears Methods: 198 caregivers from the Northwest part of Ottawa, Canada Bulgaria were interviewed. The results: 98% of the Galea T1, Romero V2, Librada S2, Valentín R2, Bonino F3 caregivers are close relatives of the patients. According An emphasis on home care for patients with advanced 1Hospital San Pedro de Alcántara, Cáceres, Spain, caregivers 81% of the cancer patients experience more disease has meant greater reliance on family members 2Hospital San Pedro de Alcántara, Palliative Care Team, than one symptom everyday or at least several times in to take on the role of caregiver. Assuming this role can Cáceres, Spain, 3Hospital Perpetuo Socorro, Palliative week. Caregivers evaluate the intensity of the be challenging, particularly with regard to symptom Care Team, Badajoz, Spain experienced symptoms as: no symptoms- 6%, light - management, where meeting the on-going needs of 16%, moderate - 38%, severe - 22%, very severe - 10%, patients is often complex. Crucial to symptom Background: Palliative Care Teams have shown unbearable (excruciating) - 8%. The most experienced management is the ability of the caregiver to accurately interest in evaluating effectiveness in interventions by symptoms are: pain, fatigue, gastro-intestinal interpret and monitor the patient’s symptoms since “resolution of doubt sessions. The aim of these sessions symptoms, psychological symptoms. 52% of the inaccurate recognition can hinder effective is to decrease main caregivers´fears. The first step to do caregivers consider themselves as not prepared to act management, resulting in patient suffering, caregiver this, is to develop a validated tool for measuring fears. properly in critical situations. 78% of them prefer to distress, and sometimes institutional admission. Thus, Aims: To validate a questionnaire to identify the main look for help from the emergency units or from the understanding factors affecting symptom assessment fears of the primary caregivers. specialized cancer hospital, as 53% of caregivers are imperative in supporting caregivers and developing Method: Creation of a nominal group composed by consider their General Practitioners as not prepared to interventions to improve this aspect of care. The professionals in Extremadura PCTs for the development take care for terminally ill patients. 36% of the purposes of the study were to: (1) examine concordance of the questionnaire. Selecting a group of national interviewed declare that GPs use different pretexts to between patients and caregivers on patient symptoms experts whom were sent the questionnaire deflect their demands for palliative help as: 64% of GPs and symptom distress, and (2) identify psychosocial independently developed by the group rated for do not consider themselves trained enough to look factors that affect levels of agreement. Sixty-six patients qualitative assessment (yes / no) and quantitative after palliative patients and in the rural regions (36%) with advanced cancer receiving home palliative care, (0minor-10major score) of each one of the questions GPs often are not at reach when needed. All of the and their primary family caregivers assessed patient according to their relevance, accuracy, clarity and interviewed support the establishment of hot phone symptoms using the Memorial Symptom Assessment understanding. It was made a section for comments. An line for palliative care phone consulting. 94% of the Scale (MSAS). Levels of agreement for individual analysis of the median scores for the selection of items caregivers would like home care palliative teams to help symptoms ranged from poor to excellent (ICC 0.07- and suggestions for changing the registration of some them in everyday care. 78% of the caregivers would like 0.75). Analysis of the group means using paired t-tests, of the statements was made. The new questionnaire to have additional information I palliative care. revealed significant differences for the MSAS subscales modified was sent to experts for their assessment on Conclusions: There is constantly increasing demand (psychological, physical and general distress index), and where they come expressed: the initial questions of for quality palliative care together with the increasing for four of the 12 physical symptoms and five of the six validity of registration; ammendements by the survival of the cancer patients. More information, psychological symptoms. The magnitude of the reviewers, and the questions changed in response to education and training in palliative medicine for the observed differences indicated a small to moderate bias comments described. The agreement between all the GPs and caregivers as well as development of home care for caregivers to overestimate, which was more marked suggestions to accept changes should be made to teams are necessary in order to ensure qualitative and for psychological than for physical symptoms. The respond with a Yes / No. Now, the reliability of the available palliative care. results indicated that patient-caregiver dyads, in which instrument is being checked in a pilot study to 125 caregivers reported greater mood disturbance and caregivers of terminally ill patients. Uniformity and perceived burden, and patients expressed a greater consistency of questions and items will be verified by PE 1.F211 sense of being a burden to others, were more disparate statistical analysis to measure the Cronbach alpha in their ratings. The findings add to a growing body of coefficient. Carer burdon: The impact of caring for dying literature that has identified factors affecting caregivers’ Results: The nominal group designed a questionnaire patients with cancer at home symptom assessments. comprising 60 questions divided into 6 sections. We selected a total of 23 national experts, 16 (70%) Jack B A1, O’Brien M1 participated in the assessment of the survey. The survey 1Edge Hill University, Faculty of Health/Evidence-based PE 1.F213 finally was reduced to 25 questions spread over 6 Practice Research Centre, Ormskirk nr Liverpool, sections. United Kingdom Examining family satisfaction with medical Conclusion: The cohesion of the teams, experience in intensive care working together, and the consensus of a panel of Background: It is estimated that the majority of experts have created a poll fears in the primary adults (if diagnosed with a terminal illness) would Albert N1, Dennison C1, Lagman R L2, Bena J3, Mcintyre S3 caregiver. prefer to die at home. Although UK government 1Cleveland Clinic, Medical Intensive Care, Cleveland, initiatives such as the introduction of the End of Life United States, 2Cleveland Clinic, Harry R. Horvitz Care Programme promote patients’ choice to die at Center for Palliative Medicine and Supportive PE 1.F215 home despite this there remain a persistent number of Oncology, Cleveland, United States, 3Cleveland Clinic, patients with cancer who had chosen to die at home Cleveland, United States Conspiracy of silence prevalence in terminal being admitted to hospital in the last days and hours of cancer patients in Extremadura life. Aim: Evaluate family member satisfaction with the Aim: The aim of this study was to explore the factors medical intensive care unit (MICU) experience. Gil Sierra M1, Gámez García D2, Franco Rubio C3, Ayuso A that influence this outcome. Methods: Using a prospective, descriptive design and M4, Alonso Ruiz M T5 Methodology: A qualitative study using two focus convenience sample, a survey was mailed to the 1Hospital Campo Arañuelo, Palliative Care, Navalmoral group interviews with community nurses (district designated spokesperson of patients who died in MICU de la Mata, Spain, 2Hospital Virgen del Puerto Hospital sessions nurses and community specialist palliative care nurses) or were discharged alive. Family member & Hospital Coria, Plasencia/ Coria, Spain, 3Central was undertaken across two primary care trusts in the characteristics, admitting diagnosis, cause of death, and Services Extremadura Health Service, Mérida, Spain, (Friday) north west of England. Data was analysed using a family satisfaction related to care, respect, physical 4Hospital Don Benito, Villanueva/Don Benito, Spain, 5

thematic analysis approach. resources, communication and decision making were Hospital San Pedro de Alcantara, Cáceres, Spain Poster Results and discussion: All respondents highlighted collected by multiple choice and Likert-type questions. the ability of carers to cope as a major factor affecting To assess differences between factors by patient status at Introduction: Within the palliative care regional whether patients with cancer were enabled to die at discharge, Wilcoxon rank sum test, Kruskal-Wallis test, program in Extremadura a study has been created with home. Influencing factors such as the ability of the Dunn’s procedure or Spearman rank correlations were the aim of knowing the conspiracy of silence family to cope and the duration of the illness are also used, depending on the levels of survey responses. prevalence, factors associated to conspiracy presence reported. This paper discusses the results and explores Results: 53 spokespersons completed surveys, mean and evolution during the disease final stage. The results potential reasons for the findings. Recommendations age 59.0 (SD, 11.8) years. Mean patient age 60.7(15.0), of conspiracy of silence are launched. for the development of a carer assessment tool with mean MICU length of stay (LOS), 9.8 (9.5) days and 34 Method: The study was conceived in 3 stages: appropriate supportive interventions are made. patients (68.2%) discharged alive. Mean overall MICU (1) Prevalence prospective descriptive study, satisfaction by spokespersons was very good (range, (2) analytical study of associated factors, poor-excellent) and was higher in male responders (3) follow-up study on the evolution of patients (P=0.04) and responders of patients with respiratory presenting conspiracy of silence. Sample: cancer failure (P<0.01) and long LOS (P=0.01). MICU patients being followed-up by palliative care teams satisfaction was associated with perception of teamwork (PCT). Older than 18 years. (r = .722), courtesy shown (r = .713) and having Variables: opportunity to spend time at the bedside (r = .697; all Patient characterization. P<0.001). Of themes, satisfaction was highest in caring Disease diagnosis. practices and communication (very good-excellent) Date of death. and lower in physical resources and decision making Presence of conspiracy of silence at the inclusion time. (good-very good); results were higher for caring Associated factors: knowledge of the disease process, practices and communication in patients with long instructions comprehension level, economic level, MICU LOS and sepsis, hypotension or respiratory main carer relationship, adequate home existence, age failure diagnoses compared to short LOS and other and sex. diagnoses (all P< 0.01), but not by spokesperson The data were collected and analyzed (frequency characteristics. distribution) in the regional palliative care observatory

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 91 Poster sessions (Friday)

of Extremadura. also described a sense of loss of previously shared cancer patients was reported only by the nurses´ group Results: The data were collected on 21/04/08, activities and future plans. Breathlessness itself led to (5.9±1.8 vs. 7.7±1.8, p=0.03), but not in the other 09/06/08 and 15/09/08. carer anxiety & fear. Although breathlessness impacted groups. Similarly, the perceived success of caregiving All the PCT take part on the study (N=8). negatively on carer quality of life, the process of caring activities was rated significantly lower for ND patients 422 patients were included, 309 (73.2%) were studied was associated with some positive benefits & comforts only by the nurses’ group (5.2±1.8 vs. 7.7±0.9, p=0.001). (X= 71 years, 61.8% male). In 204 patients (66.02%) as well as burdens. Carers expressed a need for more Factors strongly contributing to this reduced conspiracy of silence was detected. information on managing the situation & future satisfaction (scoring ≥7 on a 0-10 scale) from the 113 patients (26.8%) were excluded by these reasons: expectations. nurses´ viewpoint were: increased amount of time they were included previously and/or they present a Discussion: Caregivers perceived breathlessness to be a required for care (8.6±1.4), impaired verbal (8.3±1.9) high limitation in comprehension and/or absence of frightening symptom affecting both patients and and non-verbal communication (7.1±2.3), higher main carer. themselves. It impacted on caregivers’ lives by limiting demands from the patients (7.3±2.0), difficult behavior The prevalence data are represented by area. shared activities, changing the nature of personal of the relatives (7.1±2.8), and difficulties in dealing with Conclusions: The conspiracy of silence prevalence in relationships & causing carer anxiety. Health relatives (7.0±2.1). Physicians only regarded the patients assisted by PCT in Extemadura is 66.02%. professionals need to involve carers in education about impaired verbal (8.3±1.6) and non verbal Posterior analysis will allow identifying the factors the management of patient breathlessness and communication (7.9±1.2) as aggravating circumstances, associated to conspiracy of silence and their evolution recognize their anxieties. while the psychosocial/spiritual team members found during the disease course. no particularly aggravating circumstances. Conclusions: Palliative Care nurses on our unit report PE 1.F218 significantly reduced satisfaction when caring for ND PE 1.F216 vs. cancer patients, mainly due to higher workload, Costs and determinants of home-based palliative communication barriers and “difficult relatives”. A Caring for a person in advanced illness and care in Canada larger study is in progress to validate these findings and suffering from breathlessness at home: Threats to suggest improvement strategies. and resources Guerriere D N1, Zagorski B2, Masucci L1, Fassbender K3, Coyte P C1 Gysels M H1, Higginson I J1 1University of Toronto, Health Policy, Management and PE 1.F220 1King’s College London, Palliative Care Policy and Evaluation, Toronto, Canada, 2Institute for Clinical Rehabilitation, London, United Kingdom Evaluative Sciences, Toronto, Canada, 3University of Complemetary and Alternative Medicine (CAM) Alberta, Public Health Sciences, Edmonton, Canada in palliative care patients Background: Little is known about the factors that mediate the caregiving experience of informal carers at Restructuring health care in Canada has resulted in an Büntzel H1, Büntzel J2 home, which could inform about ways of supporting increasing emphasis on the provision of ambulatory 1Südharz-Krankenhaus, Palliative Care TAM, them in their caregiving role. and home-based palliative care. Acquiring economic Nordhausen, Germany, 2Südharz-Krankenhaus, ORL, Aim: To investigate the caring experience of carers for evidence is critical given this trend and its tremendous Nordhausen, Germany patients with an advanced progressive illness (COPD, demands on family caregivers. The purposes of this heart failure, cancer, MND), who suffer from study were to: Objective: The use of complimentary and alternative breathlessness. 1) comprehensively assess the societal costs of home- methods is common in oncology, but nothing is Methods: A purposive sample of 15 carers was selected. based palliative care; and known about the role of CAM in the last days of They were recruited via the patients they cared for (who 2) examine the sociodemographic and clinical factors patient’s life. suffered from COPD, cancer, MND, heart failure), from that account for variation in costs over the course of the Material and methods: Between 1-2007 and 10-2008 the hospital, and the community. Data were collected palliative trajectory. the palliative care team treated 85 patients (50 male, 35 through semi-structured, in-depth interviews. All were Four hundred and eight family caregivers were female, median age 62 years) on out-door base. All tape-recorded and transcribed verbatim. The analysis recruited from three palliative care programs in two families were asked to complete a structured used a Grounded Theory approach and NVivo software Canadian provinces. Participants were interviewed by questionnaire regarding the use of CAM during the last facilitated the management and analysis of the data. telephone every two weeks from time of palliative care period of patient’s life. Patients suffered from cancer in Results: Several key issues affected caring in a positive referral until death; the mean data collection period 83/85 patients (98%), two patients had neurologic or a negative way. The threats to caring were was six months. Family caregivers were asked to report disorders. uncertainty, carers’ own health problems, an imploded health care appointments, diagnostic tests, travel Results: Only 20 families (31%) have not used any world, negative reactions from outside, person-loss and expenses, time devoted to providing care, and lost time CAM. Spiritual support (praying, hospice services) was acute exacerbations. Resources that carers drew on were from the labour market. Demographic, social, and asked by 60/85 families (71%). 25/85 families (29%) acceptance, self-care, availability of support, feeling clinical characteristics were also measured. The mean reported about drug use. Favourite methods were that caring is a shared responsibility with the patient, monthly cost of care per care recipient was $18,981 vitamins (n=11, 13%), trace elements (n=9, 11%), and and ‘getting on with’ caring in case of emergencies. (2006 CDN); public expenditures accounted for 22% of mistletoe (n=8, 9%). 30 patients (35%) were treated by Breathlessness was particularly challenging and carers this cost. The majority of total costs were comprised of physiotherapy (28 oncology patients, 2 neurology did not have any strategies to relieve the symptom. family caregivers’ time costs. Multivariable linear patients). Logopedy and ergotherapy were used in 10 They were ill prepared for acute exacerbations. regression indicated that care recipients with low levels patients (12%). 12 families (14%) reported about Conclusion: Carers need to be included into of physical functioning had higher total costs than aroma-therapy in patient’s care. Main information opportunities for support provision in advanced illness. those with higher levels of functioning (p=0.02) and source was the GP (house physician) (45/85, 53%)), Negotiated involvement of a health professional could care recipients who had longer episodes of care, had followed by the palliative care team (30/85, 35%) and buffer the heavy responsibilities related to home care. lower monthly costs (p=0.02). pharmacies (27/85, 32%). Internet, journals or self- They could provide problem-solving skills, and build Information regarding how costs vary across service information were used by 25/85 families (29%) on the resources that carers draw on in response to individuals may aid policy makers and mangers in only. The effectivity of the categorized methods was what they experience as most threatening to their deciding how to allocate resources to particular care estimated between 1 and 5 (very good - worthy) by the caring role. recipients. Greater clarity regarding the cost patients or their families. Following ranking was implications associated with an episode of care may registered: spiritual support 2.4; physical therapy 2.7, both improve access to palliative care by shifting logopedy/ergotherapy 3.1, drugs 3.3. 65/85 families PE 1.F217 further the emphasis to such services. It is hoped that (76%) were satisfied with the information received the findings will assist in the formulation of health from the health care practitioners. “I can see it in her face when her breathings planning and resource allocation initiatives. Conclusion: Complementary methods are often sessions really bad”: Living with breathlessness: The Funded by the Canadian Institutes for Health Research. practised during the last days of a patient. Families and experiences of caregivers friends are looking for valid information and need help

(Friday) by the professionals. The different methods have to Malik F1, Gysels M1, Higginson I1 PE 1.F219 been evaluated regarding effectivity as well as 1

Poster Kings College London, Palliative Care, Policy & acceptance by the patients. Rehabilitation, London, United Kingdom Differences in health care professionals’ satisfaction when caring for neurological versus Background: Family members are increasingly relied oncological patients - A pilot study on a PE 1.F221 upon to provide care & support in the management & palliative care unit monitoring of patients’ symptoms at home. Breast cancer in a family and the community at Breathlessness is a common, distressing symptom in Brunner M K1, Hofmann M1, Schneider M1, Haarmann- large patients with advanced disease however it is unclear Doetkotte S1, Hagen T1, Lacour-Krause S1, Wasner M1, Fegg how carers’ experience patients’ breathlessness, and M1, Lorenzl S1, Borasio G D1 Rithara S M1 how this affects their day-to-day life. 1Munich University Hospital, Interdisciplinary Center 1Nairobi Hospice, Nursing, Nairobi, Kenya Aim: To explore informal carers’ experiences of for Palliative Medicine, Munich, Germany patients’ breathlessness & understand its effect on their The diagnosis of breast cancer has a devastating impact daily lives. Background: Around 20% of patients in our palliative on the patient and the family; the disease is increasing Methods: In-depth qualitative interviews were care unit suffer from neurodegenerative disorders (ND). in alarming manner leaving many families in poverty conducted with carers as part of a larger study on the In team discussions, several team members reported and young ones without parents. experiences of breathlessness across different settings & more difficulties and less satisfaction when caring for Purpose: To explore the difficulties a family undergoes conditions. Secondary qualitative analysis of this ND patients as compared with cancer patients. while taking care of a cancer patient. dataset was performed. Transcripts were coded using Methods: An interdisciplinary focus group developed a A survey done at Ruiri village, Meru District has shown NVIVO & analysed using the Framework approach. questionnaire aimed at evaluating professional that in every six [6] families there are two patients with Results: 12 caregivers were included (11 spousal & one satisfaction with the care of ND and cancer patients by breast cancer undergoing treatment or newly daughter). Carers described breathlessness in dramatic, the various professional groups of the palliative care diagnosed. The immediate families are more depressed visual ways and emphasized the work of breathing by team, as well as possible factors contributing to the and suffer along way with the patient, hence reducing using frightening & vivid language. They described a perceived difference, using numeric rating scales (0-10). their performance at work. ‘vigilant’ role, keeping watch for signs of patient Results: The return rate was 90% (n=26; nurses 94%, There is increasingly poverty in the family forcing them breathlessness. Carers felt that breathlessness limited doctors 83%, psychosocial/spiritual workers 86%). A to sale their properties in order to afford the treatment, patients physically, causing anger & frustration. They significantly lower satisfaction in caring for ND vs. more affected are the young mothers whose children

92 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) depends on. Having a patient means stopping most of home 66,8%, in a state hospital 52.1%. The patients in the non-medical press. daily activities especially when a patient becomes were treated in hospitals competently always 20,7%, Method: The database of the main national paraplegic, 3 out of 5 patients ends up being paralyzed usually 32,1%, if money was offered 26,2%, with newspapers was searched using the words: cancer, increasing dependence to others and half of the respect always 19.4%, usually 35.1%, if money was leukaemia, mieloma, patient doctor communication patients partners ends up remarrying hence stopping offered 26%, sufficient help for personal care was cancer for the period April 2003-April 2008. A the support. The illness mostly spread to the bones offered always 18.5%, usually 29,8%, if money was qualitative and quantitative analyses was produced. especially of the spinal cord [back] complicating the offered 30,7%, never 3%. When the whole sample was Results: 1334 articles were retrieved, 884 were included support, treatment and increasing finances problems. asked to rate the care received in a hospital in a serious in the analyses after excluding those article using Many families got problems in accessing strong disease they said it was competently always 11,3%, cancer in pejorative sense (usually incurable disease of painkillers making their life a night mere, It has shown usually 17,7%, if money was offered 46,6%, with respect the society, politics etc). The number of articles has that most of the patients needs wheelchairs which our always 11,2%, usually 16,7%, if money was offered increased steadily in the researched period (93, 94, 158, health intuitions not able to supply to all patients 46,4% sufficient help for personal care always 9,6% , 268, 271) without any special monthly pattern or hence becoming a challenge to the family members. usually 14,2%, if money was offered 47,6%, never 6%. correlation with medical events. Qualitative analyses Buying is another issue since by the time patient is All respondents when confronted with medical care for revealed 10 major themes: cancer-pain-death paralyzed the family has spent all the savi. a serious illness rated as very important and important associations (395), education for health (368), There is need to increase palliative/hospice care to investigations and blood test 97%, complete medical personalities (197), incompetent health care system village level and availability to strong painkillers in exam 92,2%, time for communication 91,8%, privacy (162), humanitarian help (93),achievements in the affordable prices. Health care providers need to 87,3%, emotional support 81,2%, respect for values and health system (69), life stories (66), international understand the patient’s background first in order to be spiritual life 78%, involvement in decision 65,9%. progresses in cancer (54), faith (25), alternative able to assist the patients and also the community be Conclusion: Elements of the PC model detailed treatments (15). aware of the hospice services being offered. examination, emotional and spiritual support are Conclusion: The cancer-pain death association is important for the population. This major focus towards reflecting the medical reality of late diagnoses of cancer investigation might put pressure on palliative care associated with reduced survival. Progressive increase in PE 1.F222 services for unwanted procedures and raises questions number of article on health education (risk factors, what is rated as competent care. Further indept protective factors, awareness campaigns) shows the An experience of Buddhism based palliative care interviews needed. EU funded grant. maturity of the press and involvement in education for 1: How nurses see the role of Bonze at Vihara healthy life style. The predominant negative image of unit? the health system in the media is maintaining the PE 1.F224 mistrust and favouring late presentation to medical Matoba K1, Morita T2, Sakiyama H3, Deguchi T4 check. there was an unexpected low number of articles 1Nagaoka Wes Hospital /Ritsumeikan University, Vihara Cross-country differences in physicians’ beliefs referring to alternative treatments. Unit/ Research Center for Ars Vivendi, Nagaoka-shi, about end of life care: The USA and Hungary Japan, 2Nagaoka Wes Hospital, Vihara Unit, Nagaoka- shi, Japan, 3Ritsumeikan University/University of Csikos A1, Mastrojohn J2, Albanese T3, Richmond J4, PE 1.F226 Surrey, College of Social Sciences/Faculty of Radwany S5 Health&Mecical Sciences, Kyoto/Guildford, Japan, 1University of Pecs, Institute of Family Medicine, Pecs, The process of recognising dying - Anything but 4Meiji University, School of Information and Hungary, 2National Hospice and Palliative Care a simple diagnosis Communication, Tokyo, Japan Organization, Quality and Palliative Care, Alexandria, United States, 3Summa Health System, Internal Pleschberger S1, Wenzel C2, Hornek S2 Introduction: Spiritual and/or religious component Medicine, Akron, United States, 4The University of 1University of Klagenfurt, Interdisciplinary Faculty, must be one of the most important aspects in Palliative Akron, Counseling, Akron, United States, 5Summa Palliative Care and Organisational Ethics, Vienna, care. However, modern, conventional Wards in Japan Health System, Hospice and Palliative Care Services, Austria, 2University of Klagenfurt, Palliative Care and are not regarded as a working place for priests. Akron, United States Organisational Ethics, Vienna, Austria Therefore although nearly two hundred PCUs are operating nowadays, not all the units employ a full- Aim: This study aims to assess, compare and contrast Aim: With the introduction of care pathways for end- time priest. In addition, among 190 PCUs, there are knowledge and perceptions of primary care physicians of-life care, recognising dying as a key process for a only three units which clearly state that they founded in the United States and Hungary regarding end-of-life pathway-decision is of increasing interest. This paper by Buddhism. care and hospice. We hypothesize that differences exist aims to show that recognising dying goes beyond a Association of Buddhist Vihara was formed about due to the duration and breadth of hospice availability simple clinical diagnosis and is influenced by a number 15years ago as a voluntary organization of Bonze who in each country. of factors. willing to help one of the PCU based on Vihara Methods: Purposive samples of physicians from Methods: As part of an ongoing research project on concept. Through their activity, we try to examine the Hungary and the U.S. were obtained and surveyed. A recognising and acknowledging dying in home care, a function of Bonze at PCUs in Japan. voluntary, self-administered survey and cover letter critical literature review was done. It covered a broad Objective: As the first Step of our investigation, We ask were mailed to all practicing family physicians (339) in range of literature, including clinical aspects and state how their colleagues, i.e. nurses see their function in Baranya County, Hungary. The survey was written in of the art diagnosis in medical literature, as well as the ward in order to understand the role of priest in English, translated into Hungarian, and pre-tested on research evidence and social theory on transition into Buddhism based Palliative Care Unit. Hungarian faculty physicians. After similar vetting in the dying phase. The literature search included Method: Semi- structured private interview was the U.S., the survey and cover letter were mailed to 300 databases such as PubMed and CINAHL, Web of performed by two sociologists at the ward. All family practitioners and general internists in Summit Science, palliative care textbooks and library catalogues. conversation was recorded and convert into transcript. County, Ohio in the U.S. Descriptive and bivariate Results: There are three main areas of theoretical Atlas.ti was used for some part of text analysis. analyses were conducted using SPSS. discourse which influence recognizing dying, Result: 8 nurses were interviewed. 4 of them were Results: The response rates were 54% in Hungary specifically clinical and professional issues, recruit with in a year. (n=182) and 48% in the United States (n=145). Seventy- organizational issues and social issues. With regard to The longer they work with bonze the vaguer they two percent of U.S. and 0.5% of Hungarian physicians clinical issues, palliative medicine provides the context realize what to expect them to play. reported that currently available services for the for the most elaborate debate of how dying can be Discussion: In order to obtain a full time post as a terminally ill were exceptionally good. Fifty-eight “diagnosed”. However, results also underline a number professional in a hospital organization, clear job percent of U.S. physicians indicated they were quite of difficulties in the practice of diagnosing dying with description is required. Less experienced Nurses have knowledgeable of hospice compared to 10% of issues of institutional background among them: Rules, more clear vision about Bonze. What does it mean? Hungarian physicians. Five percent of U.S. and 38% of routines and communication within organisations play Their job style may not fit for the concept of the Hungarian physicians believed that discussing a a major role, and key elements are also contained in sessions profession? More examination is needed. terminal prognosis with the patient leads to issues of hierarchy and professions as well as the

hopelessness. Some similarities existed in beliefs about institutions’ conceptual orientations (e.g. hospice (Friday) the appropriateness of interdisciplinary care teams and versus hospital). Recognizing - and even more so,

PE 1.F223 palliative care for terminally ill patients. acknowledging - dying, finally, is a social process in Poster Conclusion: Results illustrate differences and which the dynamics of a number of people, first and Palliative care model and Romanian health care similarities in physicians’ beliefs about the care of foremost the patient and his or her family, must be system terminally ill patients between the two countries. taken in account. Divergent responses may be viewed as a snapshot of Conclusion: To know more about the interplay Mosoiu D1, Gorog I2, Munteanu A3 each country’s evolving approach to end-of-life care. between these issues may help to overcome well 1Hospice Casa Sperantei, National Education and Such a picture, though fixed in time may help documented barriers of recognizing dying in literature. Resource Center, Brasov, Romania, 2Hospice Casa physicians, educators, and administrators to plan for In light of this, it is essential to overcome a solely body- Sperantei, Brasov, Romania, 3National School of the future in both educational and clinical arenas. The related orientation, and therefore an interdisciplinary Political Science and Public Administration, Sociology U.S. Fulbright Program and the Summa Foundation approach in research and practice is essential. Department, Bucharest, Romania funded this study.

Palliative care brings a new philosophy, the PE 1.F227 individualised whole person care. Population might be PE 1.F225 so much accustomed with the existing health model Palliative care non cancer and pleased that no changes are desired. Cancer reflected in the non-medical written Aim: To explore populations experiences of health press Sales P1, Cabrera M1, Cantarell G2, Buera M1, Andreu E2, services when caring for PC patients and expectations Anton E2 towards health services. Mosoiu D1 1Parc Tauli Hospital, Sabadell, Spain, 2Albada Center, Method: Face to face survey of a representative sample 1Hospice Casa Sperantei, Brasov, Romania Sabadell, Spain of the general population drawn from electoral list administered by a national survey company in Main beneficiaries of palliative care services are cancer Background: Palliative medicine aims to provide a September 2008. patients. Cancer is a disease that caries a special professional response to patients and families suffering Results: 1250 people were surveyed. 225(18,1%) had significance transmitted throughout the whole care of advanced organic diseases. the experience of caring for a patient with advanced or the patient. Media is newly a “educating realm”. Aim: To describe the experience regarding patients and terminal disease. This patients received episodic care at Aim: To find out the meaning associated with cancer families of professionals treating patients with

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 93 Poster sessions (Friday)

advanced organic diseases. evidence for the use of any systemic pharmacologic severely affected by Multiple Sclerosis (MS) and by Method: Open answer interviews to medical teams substance for the symptomatic relief of dyspnea in health professionals caring for them. treating patients with heart failure (HF), chronic chronic heart failure patients. First, electronic searching Methods: Episodic interviews were conducted with 15 obstructive lung disease (COLD), liver disease (LD), of the literature in the following databases was done: patients feeling severely affected by MS. Focus groups chronic kidney disease (CKD) and geriatrics. The CINAHL, EMBASE, MEDLINE and PUBMED (until 2008 and expert interviews were held with 23 health questions about patients included symptoms, worries, week 33). The reference lists of relevant articles and professionals. The interview guide covered questions difficulties for decision making, and experiences during reviews were hand searched. Every type of study was about feeling severely affected, perceived needs and the the process. Questions related to families included care included. understanding of the concept of PC. environment and frequent needs. Questions to the Ten relevant articles were found, seven were excluded. Interviews and focus groups were recorded, transcribed medical team included information-communication There was no substance group found apart from verbatim and analysed by qualitative content analysis. issues, ethical dilemmas, education needs, and sanitary opioids. No relevant chart reviews, case reports or other Here results of the analysis regarding the understanding resources needs for giving an adequate follow-up. low-level evidence papers could be identified Three of PC are presented. Results: The different organic diseases shared some papers were randomized, double blind controlled trials Results: MS patients hardly knew the term “PC”. They symptoms such as: dyspnea (HF, COLD and CKD), with an evidence level Ib. One study revealed an effect had heard about it mostly in context with dying and osseous and muscular pain (HF and geriatrics), and of five mg oral morphine on dyspnea over the whole death and therefore they did not regard it as a possible delirium (LD, CKD and in geriatrics). One common day. Two studies found a positive effect of oral approach for themselves. Hospices were known as concern was the loss of autonomy. Most caregivers dihydrocodeine (1mg/kg) and 1 or 2 mg of intravenous institutions for cancer patients in which their wishes expressed burnout and feelings of impotence. The diamorphine during a single exercise regarding dyspnea and the concerns of relatives are the most decisive medical team needs were more sanitary education, and exercise capacity. The number of patients in all factors. A more detailed explanation of the concept of continued follow-up by the reference team, and studies ranged from ten to sixteen. PC, however, aroused interest in patients. availability of a palliative care team. The quality of the identified studies allows the use of For health professionals PC was predominantly Conclusions: Patients with different advanced organic opioids in patients with chronic heart failure with clear associated with dying cancer patients and death. As diseases share some common symptoms. Consensus limitation due to the small numbers of patients. according to the interviewed physicians neurological and integration in their care could be helpful since Further studies are strongly recommended to lower the patients would not die of their neurological disease, PC experts in palliative care are needed among the barriers for the use of opioids in non-cancer patients for was not regarded as necessary for them. Nevertheless specialists’ teams, and specialists are needed in the symptomatic treatment of dyspnea and improve the they stated that they offer enough palliative care for palliative care teams. More scientific evidence is needed quality of life of this growing population. their MS patients. in order to identify prognosis factors in the final phase Conclusion: All stakeholders show a lack of accurate of these conditions. knowledge of PC and associate it with death. This leads PE 1.F230 to fear, discomfort and rejection of PC on patients’ and health professionals’ side. Therefore PC has to PE 1.F228 Attitudes towards death of patients feeling communicate its approaches widely, especially that PC severely affected by Multiple Sclerosis in addresses all patients with an incurable, progressive, Amyotrophyc lateral sclerosis: From first Germany life-limiting diseases i.e. also to patients suffering from symptom to the last breath neurological disease like MS. PC does not want to Galushko M1, Golla H1, Ostgathe C1, Voltz R1 substitute neurological care for MS patients but to Cabrera M1, Sales P1, Cantarell G2, Duaso N2, Buera M1, 1University Hospital Cologne, Department of Palliative complement it. Andreu E2 Medicine, Cologne, Germany The study was funded by Gemeinnützige Hertie- 1Parc Tauli Hospital, Sabadell, Spain, 2Albada Center, Stiftung. Sabadell, Spain Aims: Aim of this project was to assess how German patients severely affected by Multiple Sclerosis (MS) Background: Amyotrophic lateral sclerosis (ALS) is a address death in the context of their disease. PE 1.F232 terminal neurodegenerative disorder affecting motor Methods: Episodic interviews were conducted with 15 neurons which aetiology still is unknown. It is patients feeling severely affected by MS. The interview Developing palliative medicine services for characterised by the preservation of cognitive, sensitive guide concentrated on perceived needs, feeling severely dementia and autonomic nervous system functioning. affected and the understanding of the concept of Aim of study: To chronologically describe the main “palliative care”. Questions about death were not raised Jordan A I1, Paes P1, Quinn I2, Alexjuk E3, Ransom P2, clinical, psychological and social issues related to this explicitly. Hughes J C4 disease. Interviews were recorded, transcribed verbatim and 1Marie Curie Hospice, Newcastle, United Kingdom, Method: One case report (from the initial diagnosis to analysed by qualitative content analysis in regard to the 2North Tyneside PCT, Newcastle, United Kingdom, death) based on open response interviews and review of thematic field of death. 3Alzheimer’s Society, North Tyneside, United Kingdom, clinical records. Results: The sample included 6 men and 9 women 4Northumbria Healthcare NHS Foundation Trust, Results: Male patient, aged 46 years old, divorced, one living in various areas, age range 24-73. From 15 Newcastle, United Kingdom son, and suffering from hypothyroidism. In May 2006 interviewed patients, 11 unasked entered the thematic he was diagnosed with ALS. During the first year of the field of death. Their approach can be divided into 4 Aim: Dementia currently affects approximately 700 disease, main symptoms were weakness and walking strategies to deal with this topic: 000 people in the UK, with cases predicted to rise to 1.7 impairment. After being diagnosed, he was emotionally 1) trivializing, million by 2051. In common with other progressive life impacted and reported feelings of fear and anxiety. He 2) bearing, threatening conditions, it has been recognised that the was also worried about the future of his son and his 3) soothing and principles of palliative care may apply to patients with own. During follow-up, the patient experienced 4) abstracting. dementia. The reality, however, is that most patients dysphagia and respiratory difficulties. The occurrence These correspond to 4 different attitudes to death: who access hospice and specialist palliative care in the of these symptoms generated a more active 1) death is not relevant, UK have cancer. A recent document published by the participation of the multidisciplinary team for making 2) take up the duty to live, National Council for Palliative Care highlighted the consensus decisions with the patient. In the emotional 3) desire for death and importance of creative partnerships in developing sphere, fragility, fear of future and anxiety increased. In 4) need to speak about the end of life. palliative and end of life services for people with the social sphere, because of his high functional Of the 4 interviews where the interviewees did not dementia and the need to formalise successful local dependence the patient decided to live in an old enter the thematic field of death, 2 were enjoying their practice. people’s home. The patient died in April 2008 at the lives. They managed to accept help from others and Method: A steering group was initially formed with a Palliative Care Unit with his family and his usual concentrated on what abilities and possibilities in life view to developing better palliative medicine services sessions medical team. they still have. Another patient hoped that his for people with dementia in the North Tyneside area. Conclusions: ALS is a devastating disorder involving condition will improve and he can return to his earlier In order to educate and encourage debate surrounding

(Friday) social, physical and emotional components. In order to life style. the issues in providing palliative care for people with attend patient and family needs it is necessary to make Conclusion: Death in the context of MS is an dementia, a one day conference was held in July 2007.

Poster a global assessment and to have a multidisciplinary important topic for patients feeling severely affected as The delegates at the conference were all asked to team (psychologist, neurologist, logopedia expert, and they brought up this topic spontaneously. The different highlight the areas of maximum importance for future lung diseases physician). Also, a home medical team perspectives on death might require various approaches development. These topics were then discussed further would be helpful. to patients. Palliative care can offer interventions which in a workshop of local providers of care for those correspond to their strategies, e.g. support in coping dementia held in January 2008. These responses were with fear and with one´s fate, offering alternatives in collated to develop a working document to inform PE 1.F229 crises and help in getting contact with inner feelings. service provision and as a resource for further research How these interventions can be applied concretely to and debate. Symptomatic therapy of dyspnea in patients these MS patients should be a matter of further Results: The four highest rated topics were: Advanced with advanced chronic heart failure investigations. care planning, Psychological support, Managing acute The study was funded by Gemeinnützige Hertie- events and Terminal care. The results of the workshop Hochgerner M1, Fruhwald F2, Strohscheer I1 Stiftung. has been summarised in the diagram below. 1Medical University Graz, Graz, Austria, 2Medical Conclusions: The final report from this consultation University Graz, Department for Cardiology, Graz, process is currently being written with the areas for Austria PE 1.F231 future service development clearly outlined from the discussions that have been held. The goal of improving In times of reduced mortality from myocardial Attitudes of severely affected Multiple Sclerosis the quality of care for those with dementia must not infarction and ageing of the population, numbers of patients and their health professionals towards only be highlighted and debated at a national level, patients suffering from chronic heart failure continues palliative care local services and service providers must be involved in to rise. In spite of optimal cardiological treatment, order to ensure that these goals can be met. many patients will still suffer from dyspnea. The use of Golla H1, Galushko M1, Ostgathe C1, Voltz R1 opioids for the relief of breathlessness in cancer 1University Hospital Cologne, Department of Palliative patients is common, because of well known barriers Medicine, Cologne, Germany there exists few experience in patients with chronic heart failure. We conducted a limited systematic Aims: Aim of the project was to elaborate how literature research in order to find out if there is palliative care (PC) is understood by patients feeling

94 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday)

PE 1.F233 PE 1.F235 (number of patients, only died patients, descriptive types….), the information obtained suggests: Quality of dying at a cardio-thoracic tertiary Symptoms in non-cancer conditions near the 1) Dyspnea class is described in a very low percentage of referral centre - A survey end of life: Identification and comparison of the our sign. But when it occurs, there is a correlation with most common symptoms in advanced chronic a dyspnea class III-IV. Jamal H1, Ubogagu E A1 kidney disease and advanced chronic obstructive 2) As the same way it happens with ejection fraction 1Royal Brompton Hospital, Palliative Care, Harefield, pulmonary disease (that is, it is very low), but in this case, when we United Kingdom measure the ejection fraction, there is few patients with Hart S1, Murtagh F2, Bausewein C2, Higginson I2 ejection fraction less than 30% (only the 30% of them). While the disease trajectory for cancer is predictable 1St George’s University of London, London, United 3) The treatment of these patients were not correctly with a well-defined terminal phase, the course for Kingdom, 2King’s College London, Palliative Care, done. organ failure remains unpredictable. Often Policy & Rehabilitation, London, United Kingdom characterised by a series of exacerbations and remissions, progressive deterioration can culminate in Aim: To describe and compare symptoms towards the PE 1.F237 gradual or sudden unexpected death, leaving patients end of life in patients with stage 5 chronic kidney without any discussion of end-of-life care preferences disease (CKD) and stage III and IV chronic obstructive Prognosis markers in patients who presented or closure. We analysed all the deaths in our hospital in pulmonary disease (COPD). heart failure and died in our medicine internal 2007 prior to the introduction of a Supportive Care Methods: Secondary analysis of data from prospective service Pathway. longitudinal symptom surveys in two non-cancer Aim: The main aims were to document the current populations - Carmona F1, Mogollo A1, Gutiérrez D1, Romero P1, Martin practice and to identify patients who were known to 1) patients with stage 5 CKD managed without dialysis, M1 palliative care as a marker for good death. and 1University Hospital ‘Puerta del Mar’, Cádiz, Spain Method: The list of all deaths in 2007 was obtained 2) breathless patients with stage III and IV COPD. from the hospital. Case studies were randomly selected Baseline data was extracted and analysed in SPSS for Introduction: Actually, there is a growing interest to from a list of patients who had stayed > 7days for in- two validated ordinal scales, the Memorial Symptom know prognosis markers to predict the mortality of our depth analysis to identify possible triggers for timely Assessment Scale Short Form (MSAS-SF, measuring patients, especially patients with chronic and referral to palliative care. symptoms) and the Palliative Performance Scale (PPS, progressive non oncology diseases. In this way, we will Results: In 2007 there were 8266 admissions and 129- measuring functional status). be able to apply the suitable measures for diagnosis and recorded deaths. Age range 22-96 over half between 65- Results: Data was extracted for 133 respondents, n=73 treatment in agreement to their clinical situation. The 96. Of the 129 patients in the study, 7 were diagnosed with stage 5 CKD and n=60 with stage III and IV COPD. more important chronics and progressive non with neoplasm, 9 with heart failure, 20 with valvular Although CKD patients were significantly older (mean oncology disease is the heart failure due to its high heart disease, 4 with cardiogenic shock, 3 with fatal age = 80.8 yrs vs 65.2 yrs in COPD, p < 0.01) the groups prevalence, economic expense and high arrhythmia, 7 with cardiomyopathy, 52 with had similar functional status (mean PPS = 62.1 in CKD morbimortality. myocardial infarction/ atherosclerotic disease, 9 with and 61.5 in COPD). Symptom burden was high in both Objective: To present possible prognosis markers in pneumonia/respiratory disease, and 18 others (i.e. populations, with a mean of 12 self-reported symptoms patients with heart failure at the moment of the aortic dissection/endocarditis). from MSAS-SF in CKD and 14 in COPD. Shortness of admission in the hospital. We are taking as a reference Half the patients (64/129) were in hospital for over a breath (78%), lack of energy (75%) and drowsiness those patients who died during their admission period week before they died. A third of patients (21/64) were (63%) were among the five most frequently reported with this disease. known to Palliative Care. Data from the in-depth symptoms in both conditions, but other common Patients and methods: It is a descriptive study in analysis suggests that timely involvement of Palliative symptoms were disease-specific: 79% of CKD patients which we gathered all patients who died in the internal Care results in better outcome. had itch and 58% had swollen legs, while 78% of COPD medicine service of the University Hospital “Puerta del Conclusion: This retrospective analysis of the quality patients had dry mouth and 53% had cough. Some Mar” during one year. These patients were diagnosed of death in a cardiothoracic tertiary referral centre, symptoms were disproportionately more severe in each with heart failure. We describe clinical and analytic illustrates a wider role for joint Palliative Care support condition, notably itching and pain in CKD, and variables that could arise as prognosis markers due to its alongside active treatment in patients with end-organ shortness of breath and dry mouth in COPD. high percentage of appearance in our patients studied failure. Furthermore, data from in-depth case studies Conclusion: Symptom control needs are high for and died. We use Word and Excel informatics programs have identified a number of potential triggers for timely patients with advanced CKD and advanced COPD, but to study the results. referral to Palliative Care, aimed at improving the while some symptoms (such as shortness of breath and Results: We find the following results. overall outcome. lack of energy) are common to both groups, others From 58 patients studied, we observe these factors: (such as itch or cough) are disease-specific. - Comorbilitys associated: 93% Understanding these patterns of similarity and - Anemia (haemoglobin <10 mg/dl): 79% PE 1.F234 difference informs the adaptation of ‘standard’ - Hyponatremia (<135 mg/dl): 20% palliative care services, which have been developed - Renal dysfunction (Creatinine >1.3 mg/dl): 40% What do relatives think are important aspects of largely for advanced cancer patients, for those with - Altered mental status: 31% care in patients with severe stroke? non-cancer conditions. - Hyperglycemia (>120 mg/dl): 65%. Conclusions: With the limitations of our study Adams A1, Wee B2 (number of patients, only died patients, descriptive 1Florence Nightingale House Hospice, Palliative PE 1.F236 cases ...), the results obtained suggest that there are Medicine, Aylesbury, United Kingdom, 2Sir Michael markers which can work as bad prognosis markers in Sobell House Hospice, Palliative Medicine, Oxford, National Hospice Organization (NHO) the moment of the admission in hospital in those United Kingdom terminability criteria for the heart failure. Are patients who suffered from heart failure. In our study, valids in our hospital? we highlight: Stroke is the third commonest cause of death in the - Comorbilitys associated United Kingdom. Little research has been done into the Carmona F1, Mogollo A1, Gutiérrez D1, Romero P1, Martin - Anemia care of these patients. This study aimed to explore the M1 - Hyperglycemia needs of patients who were either dying from stroke or 1University Hospital ‘Puerta del Mar’, Cádiz, Spain - Renal dysfunction. had a poor prognosis after a stroke. Qualitative in-depth semi-structured interviews were Introduction: We have terminability diagnostic carried out with relatives of patients who had had severe criteria for non oncology patients. The NHO criteria for PE 1.F238 strokes, admitted to an acute general hospital. Interviews heart failure are: sessions were conducted at least seven days after the acute event 1) Dyspnea classes III-IV according to the New York Palliative care for Indigenous renal clients living but while the patient was still in hospital. Severe stroke Heart Association Functional Classification. in remote Australian settings. A new model and (Friday) was defined as a patient who had a National Institute of 2) Echocardiography with ejection fraction less than public health collaboration

Health Stroke Scale (NIHSS) score >15 and poor 30%. Poster prognosis in the judgement of the multi-disciplinary 3) Ideal treatment with ACE inhibitors/Angiotensin II Boughey M1 stroke team. The interview schedule covered all aspects receptor antagonist, vasodilators and diuretics. 1St Vinvents Hospital, Palliative Care, Windsor, Australia of care: physical, psychological, social and spiritual. Objective: To describe the usefulness and validity of Questions were also asked about information giving by the NHO terminability criteria for the heart failure in The incidence of end-stage renal disease (ESRD) in the health care professionals and involvement of patients our internal medicine service. We are taking as a Northern Territory of Australia is significantly worse and family in decision making and place of care. reference those patients who died during their than most parts of the world with its Indigenous Ten relatives were interviewed. At this point no new admission period with this disease. population developing ESRD at rates 30 times above the topics emerged and saturation was achieved. The Patients and methods: It is a descriptive study in non-indigenous Australian population. The burgeoning patients ages ranged from 28 years to 94 years (mean 74 which we gathered all patients who died in the internal numbers of indigenous ESRD patients has severely years), four were female and six male. Their NIHSS medicine service of the University Hospital “Puerta del stressed existing strategic & clinical responses to service scores ranged from 15-21 (mean 18). First degree Mar” during one year. These patients suffered from delivery which has focused upon institutional relatives were interviewed in eight patients, an heart failure in their diagnosis. We carefully observe if haemodialysis within regional centres rather than unrelated but named next of kin in the remaining two. these NHO criteria are correctly used and achieved. We remote community based options where the majority Basic comfort care and treating the patient as an use Word and Excel informatics applications to study of indigenous population live in which has brought individual was thought to be central to good care. How the results. about significant social dislocation and undermined information is given to patients and their relatives, Results: From 58 patients, we notice that: community coherence. Palliative care services have had especially when prognosis is uncertain, was also - Dyspnea classes were described in 31%. Of these cases, to cope with the concomitant escalation of patients considered by relatives to be extremely important. 84% dyspnea classes are III-IV types. dying of ESRD. Territory Palliative Care has Many relatives expressed difficulties with the current - Ejection Fraction was described in 31%. Of these cases, traditionally had to cope with very late referrals in care provided in all the above areas and some gave 30% shows an ejection fraction lower than 30%. hospitalised patients at the point of cessation or non practical solutions of how these may be tackled. - The medical treatment when the patient was admitted initiation of haemodialysis. The dislocation from This research begins to tackle the lack of research into in hospital was: ACE inhibitors/ Angiotensin II receptor community has meant that the capacity to make the end of life care in stroke patients. It’s findings will antagonist: 33%. Diuretics: 43%. Vasodilators: journey back home, in preparation for their death, as a contribute to the design and improvement of end of life 19%.Three drugs: 8%. culture imperative, often fails through lack of time, care services for patients dying of stroke. Conclusions: With the limitations of our study available transport options and poorly reorganised

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 95 Poster sessions (Friday)

community & family supports. A long-term public of heart failure. Aims: To evaluate to what extent palliative care health integrated collaboration between the Northern (2) The specialist palliative care team had accepted all interventions are incorporated into HF care; to what Territory’s Renal Services, Preventable and Chronic referrals. 15 patients (83%) were seen the same day, two extent the existing PC knowledge base is applicable to Disease Programs and Territory Palliative Care is patients were seen within 24 hours and 1 patient cardiology PC; and what are the PC issues specific to implementing significant changes in the model of care within 48 hours. cardiac patients. within communities in the care pathways and decision (3) Patients were referred for symptom management Methods: A literature review was conducted. Key data making processes for ESRD management that engage (13), support (4) and discharge planning (4). bases were systematically searched for studies on HF patients and communities earlier, initiate advanced All had multiple symptoms: 11 patients (61%) had 3 or combined with symptoms, mortality, cause & place of care planing and present palliative care options. In more symptoms. The most frequently reported death, end of life/PC and advanced HF. respecting patient and family decision making and symptoms were breathlessness (89%), anxiety (72%), Results: Cardiac patients are confronted with many of cultural practices it is hoped that the changes will make pain (44%) and nausea/vomiting (28%). Typical the same symptoms at end of life as cancer patients. a meaningful difference to the lives of patients, their interventions were opiates and benzodiazepines for However, the causes, mechanisms and treatments differ families and communities as a whole. This presentation breathlessness, opiates for pain and appropriate anti- to a certain extent. Specific challenges include will detail the elements of the collaboration and the emetics for nausea. Taking into account confounding identification of a “dying phase”, disengaging model between services and present the preliminary factors, there was evidence that interventions implanted defibrillators, avoiding unnecessary data and evaluation of the changes and their impact. benefitted for breathlessness (56%), pain (75%), anxiety treatments and procedures, and caring for patients on (54%) and nausea/vomiting (80%). 56% of patients’ waiting lists for heart transplantation. Few centres offer relatives had required significant support. end of life care for HF patients. Those HF programs that PE 1.F239 Conclusion: Given the prevalence of heart failure the do have access to palliative professionals have shown referral rate is low. To enhance collaborative working positive results. Symptom prevalence and assessment of palliative between palliative care and heart failure services the Conclusions: HF care specialists have little or no care needs in people affected by advanced and team have maintained their open referral policy and training in palliative/end of life care. PC specialists have progressive neurological conditions (Parkinson’s also attend the heart failure multidisciplinary meetings little training in the specifics of cardiology PC. A model disease and related disorders of Progressive to further develop links made between the services. of total care for HF should include networks of HF and Supranuclear Palsy, Multiple Systems Atrophy) This audit will be repeated after 12 months to PC specialists working with primary care and home care reappraise how these links between the two services nurses. By incorporating PC consultation into specialist Saleem T Z1, Higginson I J1, Leigh N P2 have developed. HF programmes, total care for patients with HF and 1King’s College London, Palliative Care, Policy & their families could be maximized. Challenging cases Rehabilitation, London, United Kingdom, 2King’s should be treated jointly with PC specialists to optimize College London, Clinical Neurosciences, London, PE 1.F241 end of life care. United Kingdom Perceived needs of German patients feeling Background: Few people affected by Parkinson’s severely affected by Multiple Sclerosis: Results of PE 1.F243 disease (PD), and related movement disorders - a survey Progressive Supranuclear Palsy (PSP), Multiple Systems The palliative care needs of people living with Atrophy (MSA) have access to palliative care, yet Galushko M1, Golla H1, Hartwig A1, Ostgathe C1, Voltz R1 HIV in Kenya and Uganda: A multicentre conventional medical treatment (e.g., with 1University Hospital Cologne, Center for Palliative qualitative study dopaminergic drugs or surgery) is usually ineffective Medicine, Cologne, Germany (MSA, PSP) or associated with severe unwanted effects Harding R1, Penfold S1, Simms V1, Namisango E2, Downing in the late stages of the disease (PD). In recent years, Aims: In order to improve the care of patients feeling J2, Powell R A2, Atieno M2, Gikaara N2, Munene G2, specialist palliative care services have increasingly severely affected by Multiple Sclerosis (MS) it is Nsubuga C2, Banga G2, Kataike J2, Ali Z3, Mwangi-Powell recognised the needs of non-cancer patients. necessary to assess their perspective on their perceived F2, Higginson I1 Aims: This study sought to assess physical symptom needs. 1King’s College London, Dept of Palliative Care, Policy prevalence and wider concerns (psychological, social, Methods: A questionnaire was developed in a three & Rehabilitation, London, United Kingdom, 2African practical and information needs) of patients with step procedure including consultations of experts and Palliative Care Association, Kampala, Uganda, 3Kenyan progressive neurological conditions. cognitive interviews with patients. The questionnaire Hospice Palliative Care Association, Nairobi, Kenya Methods: We collected data on symptoms and consisted of closed questions about socio-demographic problems of patients as self-reported to interviewers in and disease specific characteristics as well as of four Aims: The majority of care for the 20 million Africans their homes on standardised questionnaires (Palliative open question about feeling affected, wishes for more with HIV is provided through non-palliative settings. To Care Outcome Scale (POS) and POS-S symptom support, perceived help and problems. scale-up generalist palliative provision from diagnosis checklist). The questionnaire was mailed to all members of the to advanced disease, the specific needs of patients and Results: 50 patients were included, mean age 68 yrs; 31 German MS society in April 2007 in the society´s families need to be determined. This study aimed to had PD, 11 PSP, eight MSA; 40/50 had severe journal “aktiv!”. Of the 1110 questionnaires returned identify domains of need in order to generate specific disability/unable to walk independently. Patients between April and July 2007 a 40% probability sample clinical recommendations. reported a mean of 11 physical symptoms. Six (N=444) was chosen for analysis. A framework of Design and methods: A qualitative study among symptoms affected more than 80% of patients: categories was inductively developed in an iterative patients, families and staff in a sample of 12 HIV care problems using legs, using arms, fatigue, pain, process in order to analyse answers to open questions. facilities in Kenya and Uganda. A semi-structured topic dribbling and feeling sleepy. Whilst six further Results: Reasons for feeling severely affected by MS guide was administered, transcripts were forward/back symptoms: difficulty communicating, swallowing, were impairment in mobility (65%), confrontation translated, interviews transcribed verbatim and stiffness, falls, bowel and urinary problems were with losses and changes (50%) and feeling weak (32%). imported into NVIVO for analysis, and a coding frame reported in over 50 %. Four symptoms occurred in less The subjective estimation of being severely affected generated independently in the UK, Kenya and Uganda that 25%: nausea, vomiting, poor appetite and pressure correlated with the EDSS at 0.536 (Spearman-Rho, before a unified agreed code applied to the entire sores. The concern of this population extends beyond p<=0,01). dataset. The dataset was coded between the these physical symptoms. Over 50% had anxiety and Respondents experienced a sense of relief by emotional international research team. At an interim and final depression. 50% had information concerns. 25% said support (69%), quietness or distraction (51%) as well as point in the coding process, coding was reviewed to they did not have anyone to share how they were cotherapies (38%). Medical care provision was ensure that each node was internally consistent. feeling. The mean POS score was moderate, mentioned only by 23%. Results: 192 interviews were conducted. Conceptually, approaching 14 out of a maximum of 40. As so far unmet needs were mentioned: better identifying care recipients and providers was Conclusion: At least 12 physical symptoms are highly financing of services (43%), better social integration complicated by the interaction between an individual sessions prevalent, which need appropriate symptom control. (32%), better medical treatments (30%) and more help being a patient, carer, advocate and staff member. Many symptoms and concerns in people severely in everyday life (28%). Patients described a number of principally clinical and

(Friday) affected by PD and related disorders are as prevalent as Conclusion: Results show that care for severely social unmet needs. A number of manageable those experienced by patients with advanced cancer. affected MS-patients should not only concentrate on symptoms were identified, including pain, itchy rash

Poster physical aspects. The consequences in everyday life, and diarrhoea. Social problems centred mainly on social network and personal identity have to be poverty and the lack of food. Patients were responsible PE 1.F240 addressed as well. We hypothesize that the palliative for large family units, bringing further disease-related care perspective with its multi-professional approach poverty and advance care planning for orphans. Improving the quality of end of life care for might help in meeting these multifold needs. Conclusion: In order to achieve integrated palliative patients with heart failure: An audit of specialist care in HIV care facilities, a number of steps need to be palliative care involvement with heart failure achieved. The palliative needs of patients must be patients PE 1.F242 recognised within HIV medicine, assessment protocols adopted, and interventions taught. Palliative “total Harris D1, Jefferson M1 Incorporation of end of life care into heart care” needs to take account of poverty and the impact 1University Hospital of Wales, Cardiff, United Kingdom failure treatment of disease on the wider family in resource-poor settings.

Aim: To audit the involvement of a hospital specialist Leventhal M E1, de Stoutz N2 palliative care team with heart failure patient. 1University Hospital Bern, Pfeffingen, Switzerland, Methods: Retrospective case note audit against criteria 2Cuore Matto, Forch, Switzerland set out in the UK National Service Framewor for Coronary Artery Disease: Background: The number of patients diagnosed with (1) Number and percentage of people with heart failure heart failure (HF) is increasing. Improvement in referred treatment has enabled longer survival following initial (2) Access to palliative care diagnosis. HF patients are confronted with frequent (3) Good symptom control and psychological support hospitalizations, increasingly debilitating symptoms, should be offered. and the ever present risk of dying, as 14% of incident Results: cases die within 6 months. Until recently, the primary (1) 18 patients had been referred (2005-2007), all focus has been on curative care. Quality of life (QOL) in New York Heart Association Class III and IV. and palliative care (PC) seems to have been relatively The number of referrals is low given the prevalence neglected.

96 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday)

PE 1.F244 structures or evidence based interventions in psychiatry 3. In males positive correlation for SOD-1&total protein are a neglected topic. Only 7 pilot shemes for palliativ (R=0,6, p=0,025) and negative correlation for SOD- The development and audit of a new self- care in psychiatry and 6 studies could be identified. 1&Thorrance scale (R=-0,62, p=0,024) was observed. assessment questionnaire/referral tool for Conclusion: Palliative care of mentally ill people is 4. No correlation in females group. patients attending an interstitial lung disease limited to gerontopsychiatric patients. Psychiatric and Conclusions: Pressure ulcers status can be effectively clinic mental health services lack of palliative care structures predicted by using Thorrance scale in combination and evidence based interventions. with knowledge of sex, blood pressure, and lipids Bruni C1, Simpson T2, Southon J2, Saunders M2, Parmar J2, profile. As intracellular marker SOD-1 correlate with Simler N2 Thorrance scale in males it will enable nurses to 1Farleigh Hospice, Chelmsford, United Kingdom, PE 1.F246 communicate more effectively and evaluate the 2Papworth Hospital NHS Foundation Trust, Cambridge, therapeutic plan of care in different sex patients. United Kingdom Challenges for HIV palliative care in Romania

Aim: Achieving timely referral to Palliative Care Landon A S1 PE 1.F248 services for patients with both malignant and non- 1Hospice Casa Sperantei, Brasov, Romania malignant disease has proved problematic. We have Determinants of the anxiety in chronic renal devised a self-assessment questionnaire for patients Palliative care is an essential component of HIV/AIDS failure patients with interstitial lung disease (ILD). This has been clinical management from the time of diagnosis to the piloted in a weekly respiratory clinic to empower end of life. Romania is one of the few countries in Buss T1, Janiszewska J1, Lichodziejewska - Niemierko M1, patients to report issues causing them concern, and to Central and South-Eastern Europe with a significant Golebiewska J1, Majkowicz M2 facilitate appropriate referrals. The outcomes of this number of people affected by HIV/AIDS, including a 1Medical University of Gdansk, Department of Palliative questionnaire were audited over a 3 month period. large group of adolescents, over 7000, who are in fact Medicine, Gdansk, Poland, 2Medical University of Methods: The support needs questionnaire was the children infected in the period 1987-1991. They are Gdansk, Department of Research on Quality of Life, developed as a collaboration between the Supportive long time survivors and are faced with difficulties of Gdansk, Poland and Palliative Care Team (SPCT) and the ILD team in social integration, access to education and jobs, stigma 2007, based on previous known research in this area. and discrimination, in addition to the usual issues Aims: The purpose of the study was to assess the New patients attending clinic are given a questionnaire related to medical care and treatment. intensity of anxiety of patients following renal to complete prior to seeing the doctor. The A 3 year pilot project was developed in 3 cities of transplantation and dialysis patients, to establish the questionnaires were audited between July and Romania - multidisciplinary teams received specialist determinants of the level of anxiety of this patients, September 2007. Comparative referral rate data from 3 training and in close collaboration with infectious and to find out an effective coping strategy with anxiety months before implementation was also collected. disease specialists in Brasov, Bucharest and Bacau in chronic renal failure patients. Results: A total number of 79 questionnaires (68% provide integrated specialist palliative care to people Methods: The study involved 84 patients, aged response rate) were returned during the audit period. living with HIV/AIDS (PLWHA) and their families, to between 23 and 80, who were qualified to one of three 24 (30.4%) patients received follow up: 16 by improve their quality of life. Bereavement support is study groups, according to method of treatment. The telephone, 7 seen in clinic, 1 by letter. Of these, 9 offered to families of deceased patients. following research instruments were used: the State- (37.5%) were identified as requiring ongoing support. A number of challenges have been met so far, the most Trait Anxiety Inventory), Scale of Personal Other outcomes included 1 referral to social services common being lack of knowledge and understanding Religiousness, the Mental Adjustment to Cancer Scale , and 2 referrals to breathlessness clinic. Patient about HIV infection both in the general public but also the Rotterdam Symptom Checklist. comments regarding what could improve quality of life amongst healthcare professionals, not only about HIV Results: The chronic renal failure patients revealed included: “help with uncontrolled panic breathing”, and AIDS but also about palliative care. Stigma and normal level of anxiety state and anxiety trait. Results of “less fatigue”, “to have help in home and garden”. Only discrimination are unfortunately encountered by Kt/V correlated with anxiety state and psychological 1 patient was referred from ILD clinic in the 3 months PLWHA on a frequent basis, which makes them state assessment, and results of eGFR correlated with prior to questionnaire implementation. cautious about approaching another medical team. physical state assessment. The change of appearance, Conclusion: Our findings suggest that there are Hospital staff may feel threatened by the involvement necessity of change style of life and over all quality of significant unmet needs in patients with interstitial of other specialists and collaboration between services life influenced on level of anxiety state in group of lung disease: a large proportion of patients had can be extremely difficult. Lack of resources and poor patients after renal transplantation. Psychological state questions and worries that they requested assistance access to specialist investigations and treatments can be assessment correlated with anxiety state in with. This questionnaire has assisted in enabling frustrating for the team and those in their care. hemodialysis patients, and pain, level of activity had an patients to receive timely referral to SPCT services. We To address some of these difficulties, the project effect on anxiety state in peritoneal dialysis patients have modified the questionnaire and are currently includes educational activities for healthcare group. The coping strategies as helplessness - piloting it in other areas across the hospital. professionals from all specialties and backgrounds to hopelessness, anxiety preoccupation correlated with improve awareness and understanding of HIV and also high level of anxiety state in study groups. a campaign in schools to educate the younger Conclusions: PE 1.F245 population. (a) The chronic renal failure patients don’t reveal heightened level of anxiety state and anxiety trait; Is there any evidence for palliative care in (b) The women demonstrate higher level of anxiety psychiatry? Results of an integrative literature PE 1.F247 trait than the men in study group; review (c) The method of treatment is a differentiating factor Metabolic factors among advanced dementia in respect of determinants of anxiety level in study Haynert H1, Schulz C1, Schnell M W1 patients with pressure ulcers in respect to their subject; 1Witten/Herdecke University, Institute for Health sex (d) Results of Kt/V, change of appearance and style of Communication and Ethics, Witten, Germany life, bad quality of life, pain and low level of activity Wysocka E1, Dziegielewska S1, Kudzia M2, Torlinski L1 correlate with high level of anxiety; Aim: The origin of psychiatry itself is a result of moral 1Poznan University of Medical Sciences, Department of (e) The helplessness - hopelessness and anxiety and political decisions against stigmatisation and Chemistry and Clinical Biochemistry, Poznan, Poland, preoccupation doesn’t effective coping strategies with exclusion and for understanding mentally ill persons 2Home Hospice for Adults of Association of Volunteers disease. and their needs. But in spite of reforms in mental of Palliative Care in Wielkopolska, Poznan, Poland health services, sufficient evidence and phenomenon lead health care provision regarding palliative care in Patients with advanced dementia when they are no PE 1.F250 psychiatry is lacking. This 5-stage integrative literature longer able to recognize food, feed themselves sessions review process focussed on independently more often suffer malnutrition and are Why and when are palliative care patients

(1) palliative care needs in psychiatry, at high risk to be bed bound. As they are bed bound admitted to hospital? (Friday) (2) specific palliative care needs of mentally ill persons they at higher risk for development of pressure ulcers. 1 2 2 2

in psychiatry, Aim: To determine which female or male sex is more Grogan E , Atkinson J , Barton L L , Peel T Poster (3) an outline of the state-of-the-art and evidence based susceptible for development of metabolic 1Northumbria Healthcare NHS Foundation Trust, interventions and complications in patients with advanced dementia and Palliative Medicine, Newcastle upon Tyne, United (4) a comparison of these with the current practice in pressure ulcers. Kingdom, 2Northumbria Healthcare NHS Foundation the field of psychiatry. Methods: Newly admitted, non-cancerous patients Trust, Newcastle upon Tyne, United Kingdom Methods: German and English literature was analysed {females (F) (n=13), males (M) (n=13)}, to Home during an alternating sensitive and sensorical research Hospice For Adults Of Association Of Volunteers Of Aim: To see why and when palliative care patients in Palliative Care In Wielkopolska with advanced present to hospital. a) computer based databases (Ovid, Embase, CareLit, dementia (Alzheimer disease, vascular, severe cognitive Methods: The notes of all consecutive medical patients CINAHL, Medline, SOMed, PsyConnet, PsycIndex and impairment) were mached age, pressure ulcers severity admitted in January 2008 defined as having palliative GeroLit), (Thorrance scale), feeding status (MNA) and erytrocyte care needs were reviewed with a standardised proforma b) monograph catalogues (KVK, booklooker.de) and sedymentation rate (ESR), complete blood count (CBC). at 2 acute hospitals in an NHS Trust. abstract volumes and Among this mached groups the clinical profile as blood Results: 47 patients were identified as having palliative c) a web based research for literature. pressure, waist circumference and metabolic factors as: care needs. 11 patients had been identified by primary We used keywords, such as “Palliative care” and concentration of total protein and lipids profile: total care as ‘palliative’. Around half of the 47 patients did “Psychiatry”[MeSh] for literature published between cholesterol (T-C), HDL-cholesterol (HDL-C), LDL- not have cancer. Active treatment was the aim of 01/1990-09/2008. In- and exclusion criteria were cholesterol (LDL-C), triglicerydes (TAG) and activity of admission in 55% and symptom control in 28%; less documented as well as a detailed research history. This superoxide dysmutase (SOD-1) were estimated. than 10% were referred for end of life care or because strategy resulted in 34 final articles and 10 books or Results: they were not coping at home. 34 patients were book chapters. 1. F in comparison with M had lower waist admitted out of hours (OOH). Of these 34 patients 11 Results: The literarture review shows the topic to be a circumference (p=0,007) (74±8 and 85±10cm), Systolic lived alone, 11 with spouse/family, 4 were from a continually published theme in international literature. Blood Pressure (p=01) (114±21and 134±15mmHg) residential care home, 4 from a nursing home and 2 Publications usually deal with the role of psychiatry in respectively. other. 12 of the 47 patients lived alone - 11 were palliative care, palliative care for gerontopsychiatric 2. M vs. F had lower T-C (p=0,02) (135±27 and admitted OOH. Of the 11 previously identified patients, psychiatric complications of terminal illness 163±31mg/dl) and LDL-C (p=0,02) (70±25 and 95+28 ‘palliative’ patients, 7 were admitted OOH, 3 in hours & or psychotherapeutic interventions. But palliative mg/dl) respectively. 1 unknown. 10 had a DNAR form and 4 were placed on

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 97 Poster sessions (Friday)

the LCP. Of the 47 patients, 15 were placed on the LCP. the boundary of the PCT. Data were supplemented by Aim: To describe the way in which a multidisciplinary 11 died in hospital, 1 went home, 2 went to a nursing analysis of relevant documentary material and team (MT) coordinates for attending patients and home and 1 remained an inpatient at the end of the observation of eight meetings. Qualitative thematic families biopsychosocial needs. MT work is addressed to audit. 4 of the 15 patients had an identified place of analysis was conducted using techniques from both patient and family. The MT is made up of patient care and 2 of them got there. Framework and with NVivo software. and caregivers together with: neurologist, lung Conclusions: Most patients presenting with palliative Results: Most informants described continuity of care physician, physical therapist, logopedia therapist, care needs had not previously been identified as in terms of relationships between professionals and dietician, nurse, social worker, psychologist, and palliative and were admitted for active management of service users, although there were differences in the palliative care specialist. The main priority in the a problem. They were more likely to be admitted to degree to which individual or team approaches were therapeutical relationship is to enhance patient’s hospital OOH than in hours, especially if they live specified and considered appropriate. Systems for autonomy during the decision making process. alone. Most had DNARs in hospital and nearly one- information transfer and for overseeing care were Communication is a dynamic process and information third of patients were placed on the LCP. Preferred highlighted. Service users valued consistency in the to patients and families is given progressively. The MT place of care was poorly documented for patients on technical care and information they received. A lack of gives continued care from the diagnosis to the end of the LCP - only 2 got to their preferred location. role clarity between generalists and specialists can the disease. Patients are diagnosed by a neurologist and Communication between primary and secondary care compromise continuity and there was evidence that symptoms and information are treated and delivered is vital in this patient group to ensure that patients are some viewed changes in service configuration as a promptly. During the course of the disease, it is cared for optimally in the location that is both threat to relational continuity in particular. No single necessary to keep patient’s hope and to give appropriate to their needs and acceptable to the patient, definition of continuity of care predominated. psychological support for both patients and families and to try to prevent unnecessary out of hours Discussion: Findings demonstrate that relational since family members play a central role in patient care. admissions. continuity remains important for most stakeholders but Conclusions: The MT intervention enables detection flag the potential tensions inherent in differing of needs, treatment adequacy and facilitates a tailored constructions of continuity between service users and care. The MT improves patients’ quality of life during PE 1.F251 providers. Systems for transferring information the process and adjusts patients and families between care settings need further attention as does the expectations. Cardiac symptom control program development way in which professionals negotiate their roles and responsibilities in relation to supportive and palliative Thai V1, Ezekowitz J2, Cujec B2, Hodnefield T2, Sanderson care services. PE 1.F255 L2, Wolch G1 1University of Alberta, Department of Oncology, Physiotherapy in palliative care: Luxury or Edmonton, Canada, 2University of Alberta, Department PE 1.F253 necessity? of Cardiology, Edmonton, Canada First Croatian national research: “The need of Hewitt B1, Bugden E1, Levinson P1 Cardiac disease remains the top killer in Canada and the citizens of Croatia for the palliative care and 1Sacred Heart Palliative Care Service; St Vincent’s heart failure is a chronic, inexorable debilitating illness the establishment of a hospice” as the Hospital, Darlinghurst, Australia with increasing prevalence in the elderly population. contribution of the implementation of the With the aging of the population, we expect cardiac palliative care/medicine in Croatian health care Aim: The objective of this presentation is to discuss the disease to remain the top few diseases to cause system growing role of physiotherapy in Palliative Care and to significant morbidity and mortality in the Canadian highlight the areas in which physiotherapists can assist population. Coupled with the other chronic illness Brkljacic M1, Golubovic V2, Sustic A2 both patients and carers. associated with age such as dementia, renal disease etc, 1University of Rijeka, School of Medicine, Department Results: It is widely recognized that physiotherapists the care of the heart failure patients is becoming of Social Science, Rijeka, Croatia, 2University Hospital assist with the physical aspects of care, namely increasingly complicated and with significant symptom Rijeka, Department of Anaesthology and Intensive Care rehabilitation/ reconditioning; and the management of burden. Unit, Rijeka, Croatia symptoms, such as pain and fatigue. However, what is International heart failure guidelines include palliative becoming more apparent is that physiotherapists also and hospice management recommendations, in which Aim: To establish the level of informativeness of have an impact on the psychosocial aspects of care. This a multi-disciplinary approach is the most appropriate citizens about palliative care generally, and a need of may be in assisting patients to realize a particular goal, strategy. the citizens of 7 croatian cities for palliative care and the maintenance of ´hope´ or the management of Symptoms are the primary driver of patients seeking the establishment of a hospice in the Republic of symptoms such as breathlessness. Physiotherapists also urgent or emergent help and result in frequent access of Croatia. To estimate the citizens satisfaction with have an educative role, and combined with their other the health care system, including visits to the current organization of health care in their towns in skills, can be utilized to assist carers more confidently emergency department and hospitalizations. This is providing adequate care for terminally ill patients. To care for patients in their own home. despite best management practices and maximal heart establish, by evaluating health professionals´ Conclusion: Despite growing evidence to support the failure management. experience, the percentage of patients who need role of physiotherapy in Palliative Care, many services A joint program between the Departments of palliative or hospice care. have limited access to physiotherapy services. In Cardiology and Palliative Medicine was developed to Methods: The survey was conducted by two identifying the range of ways in which physiotherapists better manage the refractory cardiac symptoms for anonimous questionnaires. One for the survey of non- can assist patients and carers, this presentation heart failure patients. This initiative has started with a health professionals, total of 1564 persons, while the emphasizes that the inclusion of physiotherapy in pilot project call the Heart Function Clinic - Palliative second questionnaire aimed to evaluate the attitudes of Palliative Care services is indeed a necessity, not a Care Clinic (HFC-PCC) since 01 July 2008. health professionals in 7 croatian cities, 789 subjects. luxury. The target population is symptomatic patients, Results: The total percentage in agreement with ‘frequent flyers’ to the Emergency Department because implementation of a palliative care system in Croatian of refractory cardiac symptoms with near end-of-life towns and counties amounts to 90.6%. A total of 88% PE 1.F256 issues. The goal is to divert these patients who are very of the citizens and health workers consider the symptomatic and whose standard cardiac management establishing of hospices in their town or county to be A multidisciplinary team for pain and palliative has been maximized, to the HFC-PCC. necessary. The need for organizing a system of palliative care in a university hospital The role of the HFC-PCC is to evaluate the patient using care is also supported by the level of citizens´ standard palliative care tools, stabilize symptoms and satisfaction in the surveyed towns where 43.3% of Booms M1, Jongen J L M1, van Zuylen C1, Huygen F1, van reduce symptom burden. Joint management includes citizens think that little attention is given to terminal der Rijt C C D1 nurse and physician teams nested within the HFC-PCC. patients, while 13.4% of them consider that such 1Erasmus MC, Rotterdam, Netherlands sessions In summary, HF care is in desperate need of high- patients are not given any attention at all. On the other quality research and knowledge translation to improve hand, 1.8% of the respondents think that plenty of Introduction: Since 2006 the departments of

(Friday) care for this growing segment of the HF patient attention is given to terminal patients in their towns. In Anesthesiology, Medical Oncology and Neurology of population. addition, 35.6% of citizens are of the opinion that the Erasmus Medical Center cooperate in a

Poster Croatian state hospitals take very little care of multidisciplinary intramural consultation team for terminally ill patients. 16.3% of the respondents think pain and palliative care. The team supports in the PE 1.F252 that these hospitals take no care at all of terminally ill management of pain and other problems in advanced patients, while 3% of the citizens answered that cancer patients. Defining and describing continuity in Croatian state hospitals take the utmost possible care. Method: For each consultation, the reason for asking supportive and palliative care: The stakeholder Conclusions: Is that the organization of palliative care the team for advice and daily assessments of the view and continuous education in pallitive medicine are an intensity of pain were recorded in a database. Pain indispensable and urgent need and wish of the citizens, intensity was measured by the Numerical Rating Scale. Hughes S1, Luker K2, Amir Z1 as well as the establishment of a hospice. Since 2008 the intensities of other symptoms were 1University of Manchester, Macmillan Research Unit, measured using the Edmonton Symptom Assessment Manchester, United Kingdom, 2University of System (ESAS). Manchester, School of Nursing, Midwifery & Social PE 1.F254 Results: The number of consultations increased from Work, Manchester, United Kingdom 130 in 2006, to 200 in 2007 and 118 in the first half- Amyotrophic lateral sclerosis: Multidisciplinary year of 2008. The time between clinical admission and Background: Continuity of care is a priority identified team entry to the team was less than three days for the by cancer patients and is cited as an aspiration in health majority of the patients. Pain was the most frequent and social care policy and practice guidance. There is Sales P1, Cabrera M1, Duaso N2, Cantarell G2, Buera M1, reason for consultation (in 97.5% of the consultations sparse evidence in the literature of a shared definition Andreu E2 in 2006, 92.1% in 2007, and 83.1% in the first half-year of continuity of care, nor how it is manifested in the 1Parc Tauli Hospital, Sabadell, Spain, 2Albada Center, of 2008), but the number of consultations for other provision of supportive and palliative care services. Sabadell, Spain symptoms than pain increased. Aim: This qualitative case study sought views on In 2006 the intensity of pain at entry was > 4 for 94.2% continuity of care from those involved in the planning, Background: Amyotrophic lateral sclerosis (ALS) is a of the patients; in 2007 this was the case for 86.8% and management, provision and use of palliative care terminal neurodegenerative disorder affecting motor in the first half-year of 2008 for 78.6% of the patients. services in a Primary Care Trust (PCT) in England. neurons which aetiology is still unknown. The disease Two days after admission the percentages of patients Method: Semi-structured (40) and group (2) interviews usually course with limbs weakness, dysphagia, weight with pain intensity scores > 4 were decreased to 42.9%, were used with a purposive sample drawn from within loss, and respiratory failure. 40.1% and 43.2%, respectively. All patients also suffered

98 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) from other symptoms, as recorded by ESAS. For most Conclusion: Clients who initially report seeking were used by 12.1% and the in-hospital pain clinic was patients the ESAS scores improved during the first 72 problem-solving support from a CSS often appear to used by 6.5% of the patients. hours. shift from this initial motivation, later reporting having Conclusions: The survey findings revealed that the Conclusion: The number of consultations almost valued the experience in terms of a sense of being cared current palliative care services must be improved and doubled in two years. Pain remains the primary reason for. Amongst possible interpretations for these findings the PCT is expected to fulfill those unmet needs; that is, to ask a consultation, but the team was increasingly is one that some clients initially find it easier to identify to alleviate the physical /mental symptoms of patients, consulted for other symptoms than pain. The high problem-solving needs rather than emotional needs. and actively engage in counseling for the family, when percentage of advanced cancer patients with pain at This may have implications for modes of access to the necessary. In response to those findings, a palliative entry urges increased awareness of pain in the medical service. care clinic for outpatients will be established in the and nursing caregivers. Oncology Center. Moreover, palliative care workshops for medical professionals will be held regularly to PE 1.F259 provide a certain level of palliative care in clinical PE 1.F257 practice. Careprogram palliative care in the Netherlands: Advise from experts: Consultation in palliative Networkcare improved! care in the Netherlands PE 1.F261 de Winter H-J1, Middelburg M1 Klinkenberg M1 1Association of Comprehensive Cancer Centres, Home-based palliative care services for 1Comprehensive Cancercenter Netherlands, Palliative Palliative Care, Utrecht, Netherlands underserved populations Care, Amsterdam, Netherlands In the Netherlands the last few years 72 networks Fernandes R1 Background: In the Netherlands a unique nationwide palliative care have been established. The organisations, 1University of Hawaii, Division of Palliative Medicine, palliative care consultation service (PCCS) is initiated professionals and volunteers who work together in Department of Geriatric Medicine, Honolulu, United by the government in 2004. The regionally organized these networks are looking for a model to make an States Comprehensive Cancercenter are responsible for the overview of palliative care on operational level in there organization, assessability, facilitation, coordination region. Aim of this model is to make palliative care in Aim: Kokua Kalihi Valley is one of the first federally and quality of this PCCS. Consultants are specially the region more transparent and make it possible to qualified community health centers in the United trained physicians and nurses, with a lot of experience improve the quality of palliative care. States offering home-based palliative care (HBPC). We in palliative care, working in multidisciplinary teams, The Association of Comprehensive Cancer Centres serve low income, immigrant populations from Asia 39 teams nationwide. They inform, support and advise (CCC´s) in the Netherlands have started an innovative and the Pacific Islands, whose end-of-life needs are professional caregivers in inpatient and outpatient care learning project together with 9 networks. Based on poorly understood. Our team includes a palliative settings regardless of patients’ diagnose. national standards and patients problems a model is medicine physician, nurse, case manager, psychologist, We present data on characteristics of requesting developed which helps caregivers to make the interpreters and volunteers. The purpose of this caregivers, kind of questions en problems discussed as providing of treatment and care in the region institutional review board approved study was to well as characteristics of patients involved. transparent. The concept of the model has been measure symptom relief and quality of life, resource Methods: Data are derived from an electronic reviewed during 7 months by caregivers in the 9 utilization, and satisfaction with HBPC. registration database / patient file which is completed participating networks. Methods: From 1 February 2007 to 2008, 46 by the consultants directly after a consultation case. The model is a practical tool to make the providing of homebound people with chronic advanced illnesses Results: 6026 advises are registered in 2007, mostly care more transparent. The model makes gaps and were enrolled. Data were collected prospectively, upon about cancer patients (86%), average age 67. About 1 overlap in treatment and care more visible within admission and repeatedly thereafter, using the out of 4 patients have a prognosis shorter than a week. networkregions. These gaps and overlap are an Missoula-Vitas Quality of Life Index, the Edmonton The questions concern a wide range of problems but incentive to develop projects for improvement and Symptom Assessment Scale, and the Palliative mostly concern treatment of pain, nausea, dyspnea and innovation of treatment and care in the region. The Performance Scale. Utilization of resources was tracked, delirium. 74.1% of the consulting professionals are model encourages better cooperation between the including case management, hospice, emergency, and general physicians. They frequently have questions various organisations and caregivers. After evaluation of hospital visits. about organization of care and about pharmacological the review period the model has been adjusted. The Results: The median age was 71 years, and more than issues. In a substantial amount of questions palliative model and corresponding instruments are a basis for half had chronic neurodegenerative conditions. The sedation is an issue of discussion. development of an internet application, which is a most common ethnicities were Samoan, Filipino, Conclusions: We believe that PCCS is a valuable condition for nationwide implementation. Japanese, Micronesian, and Hawaiian, accounting for service especially beneficial to general physicians at the There is a lot of enthousiasm for working with the 87%. Median stay in the program was 7 months, with a moment. Possibilities to better address caregivers in model. A plan for implementation of the model in the median of 3.5 visits. Preliminary analysis reveals high hospitals and nursinghomes need to be explored. other networks in the Netherlans has been developed. patient and caregiver satisfaction with HBPC. The In the presentation more is to be told about the To make this possible in this project support for the percent of patients with “minimal” pain (score <3) organization of PCCS in the Netherlands and the way networks will be organized on a regional and national increased from 57% to 71%. Discussions and in which we ensure quality of advise. scale by the CCC´s. The networks who were involved in documentation of end-of-life wishes rose significantly the review will support there collegue-networks by from 50% to 90% (p<0.01). The median time in hospice bringing in there expertise. Nationwide was 67.5 days. The percent of patients with no PE 1.F258 implementation will be organised in trances and will emergency room visit rose from 41% to 67% (p<0.01). take a period of 2-3 years. Meanwhile the process will Conclusions: Data on outcomes research and quality Use of UK voluntary sector cancer support be followed by evaluation research. indicators of HBPC programs is scant. We present data services on a population of immigrant Asian and Pacific Islander patients. Our experience demonstrates the Cockshott Z J1, Thomas C2, Payne S1, Fyfe D3 PE 1.F260 effectiveness of palliative care approaches in this 1Lancaster University, International Observatory on End population. of Life Care, Division of Health Research, Lancaster, Assessment of the needs for palliative care at Keio United Kingdom, 2Lancaster University, Division of University Hospital - Survey of medical Health Research, Lancaster, United Kingdom, professionals and patients PE 1.F262 3University Hospitals of Morecambe Bay NHS Trust, Clinical Oncology, Lancaster, United Kingdom Hashiguchi S1 Palliative care initiative in United Arab Emirites - 1Keio University, Anesthesiology, Tokyo, Japan A unique experience sessions Aim: Voluntary Sector Cancer Support Services (CSS) are a growing feature in the range of resources available Background: Prior to the start of operations by the Hidayatullah M1 (Friday) to people affected by cancer in the UK. Previous studies palliative care team (PCT) at our institution, the current 1Tawam Hospital Johns Hopkins Medicine, Division of

have produced inconsistent findings about why clients recognition of and attitude toward palliative care and Palliative Medicine Department of Oncology, Al Ain, Poster use CSSs, and which aspects of services are important to needs for consulting the PCT of physicians and nurses United Arab Emirates them. This study sets out to address these issues. (medical professionals) as well as the needs of cancer Methods: This research used case study methodology inpatients were comprehensively assessed to determine United Arab Emirates (UAE) is a small Middle Eastern focussing on one CSS which provides counselling, the required interventions by the PCT. country on the Persian Gulf with 4.3 million complementary and creative therapies to people Methods: Questionnaire surveys of 1) medical populations. The population compromises of 15% affected by cancer (patients, families and bereaved professionals and 2) cancer inpatients were conducted. native and 85% expatriate workers from all over the people). Interviews to discuss influences on use of the The questionnaire of patients included the M. D. world and manly from Asian countries. All patients service were conducted with 19 service clients. In Anderson Symptom Inventory, the Hospital Anxiety with cancer diagnosis are provided with free treatment. follow-up interviews clients were asked about their and Depression Scale, the Scale of Worry, and a Previously cardiac disease were considered the major experiences of the service and therapies. Interview questionnaire on the awareness and utilization of cause of death in the country but a recent survey transcripts were subjected to thematic analyses based related in-hospital services. revealed that Cancer is the leading cause of death (20%) on Grounded Theory principles. Results: followed closely by accidents (19%) and heart Results: Preliminary findings suggest clients’ reasons 1) Over 90% of medical professionals were “not diseases(12%). for coming to the CSS vary, but can be grouped into satisfied” or “slightly satisfied” with the current In Jan 2007 Tawam hospital Johns Hopkins Medicine three broad areas. Some clients report wishing to use a palliative care conditions. The improvement of decided to start the first organized Palliative care service specific therapy as a tool to solve a specific problem (a knowledge and ability to provide palliative care, of the country. This hospital is the tertiary care cancer ´Toolbox´ or problem-solving approach). Others report coordination of the location of medical care and center with 812 cancer patients treated at this center in seeking a ‘Sanctuary’ in which they feel calm and cared mental care of the family were most commonly year 2006. for (an emotionally based approach). A third mentioned. They expect the PCT to play a key role in: Plan was made to develop a fully function Palliative ´Ambivalent´ group appears to be unsure about their management of pain and other physical symptoms, care service over a period of 6 months. Initially a reasons for coming to the CSS or in what ways it can mental/psychological care, and providing education for consultation service was started in February 2007 with help them. Follow-up interviews suggest key aspects of palliative care. intensive education for all health care workers. After clients’ experiences coalesced around emotionally 2) As for the patients, their main concerns and two months an outpatient clinic and finally and based support; the benefits of feeling cared for, and an symptoms included distress, lack of appetite, inpatient unit (5 beds) is stated at the end of the six appreciation of the relaxing ‘milieu’ of the CSS. drowsiness, sad feeling, dry mouth and pain. Opioids month. In first month only 5 patients were referred to

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 99 Poster sessions (Friday)

the service and with education there was gradual specialists), 2 nutritionists, 79 nurses, 23 psychologists, ‘Experience of care’, the ‘Doctor-Patient interaction’ increase in the number of consultations to 51 patients 3 physiotherapists, 3 pharmacists and 58 specialist and the ‘Perceived Valve/Impact’ from attending the in December 2007. consultants. Until June 2008 a total of more than clinic. Total 243 patients were treated by the Palliative Care 66.000 Patients were assisted in ANT-OHH, translating Conclusions: Palliative Medicine Outpatient Clinics service in 2007. The majority of cancer patients are in an overall total of more than 10 million days of (PMOCs) are a key ‘portal’ for patients and carers to expatriate with ratio of 2.3: 1 to the native cancer assistance. About 3.000 Patients are daily assisted access palliative care services. The experiences of patients. The end of life problems in expatriate cancer throughout Italy, their median age being 75 years. patients, the ‘philosophy of care’ by clinicians and the patients is very different from native cancer patients. Conclusions: In its 23 years experience the ANT-OHH considerable challenges in trying to quantify what The expatriate have limited social and emotional model fully replies to the needs of far advanced cancer measure of utility or effectiveness is gained by patient support as they are either single or small family units. Patients. The economic advantage of hospital-at-home or professional are similar irrespective of setting. The The anguish of dying away from home and in a foreign care (30,00¤ /day the cost at home instead of steadfast challenge for palliative medicine is to capture land increases their suffering. The native cancer 670,00¤/day in the traditional hospital) is certainly the essence of our practice in a way that can be patients have support of extended families and social very important, but we would like to stress that better translated,so services can be commissioned in this network. quality and dignity of life should be the main point current climate of fiscally driven markers of care that The social , psychological and emotional issues in the supporting the idea of global hospital-at home care. struggle to reflect the ‘quality’ of individualized care expatriate cancer patients in UAE need further studies. delivery.

PE 1.F265 PE 1.F263 PE 1.F267 Palliative module for discharge managemnt Carcinoma of unknown primary. Which MDT? system Organizational structure of palliative care services in Georgia Littlewood C M1, Marshall E2, Kelly J1 Giesen H-U P B1, Held E2, Schroers W3 1St Helens & Knowsley Teaching Hospitals Trust, 1Klinikum Duisburg, Anesthesiology, Intensive Care Ghvamichava R R1, Katsarava M2, Antadze L3, Abesadze I4, Liverpool, United Kingdom, 2Clatterbridge Centre and Pain Management, Duisburg, Germany, Shavdia M4, Jincharadze M5 Oncology/ St Helens & Knowsley Hospitals Trust, 2Pflegeheime Stadt Duisburg, Duisburg, Germany, 1Cancer Prevention Center, Tbilisi, Georgia, 2Public Liverpool, United Kingdom 3Klinikum Duisburg, Geriatrics, Duisburg, Germany Health Department, Tbilisi, Georgia, 3Ministry of Labor, Health Care and Social Affairs of Adjara Autonomous Background: Approximately 60 patients present each In DRG times an optimised patient flow creates better Republic, Batumi, Georgia, 4Cancer Prevention Center, year with metastatic cancer of unknown primary(UKP). quality and economic surplus. Detecting patients with Palliative Care, Tbilisi, Georgia, 5Oncological Center, Many present as emergencies and a diagnosis is made discharge problems well in advance during the hospital Oncology, Batumi, Georgia within 24hours following basic imaging. Prognosis for stay rather than prior to discharge enables the team to majority of UKP patients is poor and can be estimated provide neccessary discharge support in time. Cancer Prevention Center is the founder of Palliative from presenting signs,symptoms and fitmess Therefore atleast after 48 hours after admission to the Care Services in Georgia. In 2004 it has founded first (performance status). Current practice shows us that hospital doctors and nurses are required to fill in a inpatient hospice (for 18 beds) providing full scope these patients undergo extensive uneccesary discharge score card for each patient. If a discharge palliative care (medical, psychological, social, and investigations to hunt the primary, that delay referral to problem is detected the ´discharge manager´is informed spiritual) to incurable patients and their family Palliative care and oncology. Investigations obstruct and starts to plan the support needed. members. Next to the practical activities, cancer open discussion with patients re likely diagnosis and One special “problem group” are palliative patients. In prevention and palliative care regional resource- prognosis .Because of the unknown primary site they order to fill the need we designed a “p”palliative patient training center conducts seminars and workshops for are not presented in any multi-disciplinary cancer team detection protocoll and score card”. It comprises health care professionals from Caucasian countries. meeting (MDT). different items( reduced life expectation/non-curative Most important organizational activities of the Cancer Aim: To design an UKP pathway in an acute district treatment or curative treatment with low Prevention Center: 2006 - Foundation of Palliative general hospital aimed at early parallel referral to success/symptomcontrol neccessary/ insufficient Home Care service (serving 50 patients at a time) in Oncology/Palliative care before investigation to support system so far). If in each sector a positive Tbilisi and a hospice in Batumi (Adjara Autonomous instigate appropriate investigations and management answer is found the discharge manager informs the Republic); 2007 - Palliative Home Care service and linking into either Lung cancer MDT or Colorectal palliative care team. It then delivers a palliative consultation service for cancer patients of local cancer MDT and thereby reducing unecessary consultation for the patient. This has to take place oncological clinic were started in Batumi. The aim of investigations and facilitating early discharge for this within 24 hours after the request on week days. It the service is to provide consultations to health care vulnerable group of patients. detects special needs of the patient and it´s care from professionals, cancer patients and their family members Method: During 3 month period a prospective survey the palliative view point and gives valid information, after their discharge from the hospital. 2008 - Palliative was performed of all new UKP patients using the support or transfer options to specialized palliative care Care service has been organized for HIV Patients in pathway.Referrals had a single point of access to UKP services such as hospices, home care systems etc. The Tbilisi and three big cities of Georgia. The patients team and were coded by cancer services.Emphasis of consult team consiste of a palliative care nurse and a receive full scope care there. At present moment Cancer management was guided by performance status(PS) doctor specialized in palliative medicine. Prevention Center is working on establishment of pain and disease pattern.Patients who presented with disease We hope to improve and to provide better service and management consulting rooms for provision of above the diaphragm were listed in Lung MDT and support for our medical colleagues as well as for the adequate pain management. those below the diagphragm in the Colorectal MDT. patients and their relatives in order to reduce Conclusion: Results: Findings show that time to diagnosis and unneccessary duration of hospital stay and 1. Palliative Care system has been established and its referral to team are reduced.Average length of stay was improvement of good quality service after discharge. consistency has been proved. halved.Using a named site specific CNS has faciltated 2. Future development of Palliative care infrastructure the addition to current MDT discussion and resulted in throughout Georgia is necessary to ensure its targeted appropriate supportive care. PE 1.F266 accessibility for the whole population in need of the Conclusion: Development of simple model of care for care. vulnerable group of patients can reduce unecesary Palliative Medicine Outpatient Clinics (PMOC): investigations and hospital length of stay. Further work Do different care settings influence the patients’ on rolling out pathway network wide and nationally is experience of care? PE 1.F268 in progress. Cawley D1, Waterman D2, Roberts D2, Rogers M3, Caress A3 Volunteer work in palliative care: A comparison sessions 1Christie Hospital NHS Foundation Trust, Department of 7 European countries PE 1.F264 of PalIiative and Supportive Care, Manchester, United

(Friday) Kingdom, 2St Ann’s Hospice, Manchester, United Woitha K1, Engels Y1, Ahmed N2, Noble B3, Ahmedzai S H2, ANT Oncological Hospital-at-Home (ANT-OHH): Kingdom, 3Manchester University’s School of Nursing, Leppert W4, Mollard J-M5, van Beek K A L6, Menten J7, 8 8 9 10

Poster Eubiosia project - An efficient model for the care Midwifery and Social Work, Manchester, United Jaspers B , Klaschik E , Paz S , Gómez-Batiste X , Vissers K of advanced and far advanced cancer Patients Kingdom C1 1Radboud University Nijmegen Medical Centre, Casadio M1, Pannuti R1, Pannuti F1 Background: Palliative care is provided in a variety of Department of Anesthesiology, Pain and Palliative 1Fondazione ANT Italia ONLUS, Bologna, Italy settings. As care is not context bound, palliative care Medicine, Nijmegen, Netherlands, 2School of Medicine teams currently form many guises within the hospital, and Biomedical Sciences University of Sheffield, Introduction: The care of cancer Patients (median life hospice and community environments. A Palliative Academic Unit of Supportive Care, Sheffield, United expectancy 80 days) has dignity of life as its primary Medicine Outpatient Clinic (PMOC) exists to meet the Kingdom, 3University of Sheffield, School of Medicine goal. Since 1985 the ANT Foundation has created the flexible provision of the needs and preferences of and Biomedical Sciences University of Sheffield, ANT-OHH, assisting these cancer Patients in their individuals. In gaining patients’ actual experience of Academic Unit of Supportive Care, Sheffield, United homes (EUBIOSIA PROJECT) with traditional hospital care in preference to their satisfaction, it is a more Kingdom, 4Poznan University of Medical Sciences, level. accurate measure of how and what patients judge as Department of Palliative Medicine, Poznan, Poland, Methods: The structural model of ANT provides the important in their health care. 5Ensemble Soigner et Acompagner a Paris, Paris, France, Patients and their families with a free-of-charge 24 Methods: A naturalistic qualitative approach through 6University Hospital Leuven, Radiotherapy-Oncology, hours social and health assistance. The ANT-OHH semi-structured interviews was employed.Interviews Leuven, Belgium, 7University Leuven, Radiotherapy- physicians, nurses and psychologists are organized in were conducted with patients and clinicians from a Oncology, Coordination Palliative Care, Leuven, functionally autonomous professional teams based on variety of settings and they were tape-recorded, Belgium, 8University of Bonn, Malteser Hospital the traditional hospital model. The acceptance of the transcribed verbatim and analysed thematically. Bonn/Rhein-Sieg, Dept. Science and Research in Patients in ANT-OHH depends only on the diagnosis of Results: Participants(n=14) were keen to tell their story Palliative Medicine, Bonn, Germany, 9Universitat Jaume cancer and the request of the G.P. All the professional and share their experiences from initial ‘thought’ or I, Modulo Departemental T1, Castelló de la Plana, staff is subject to basic and continuous training. ‘expectation’ about the clinic to why they ‘needed’ to Spain, 10Institut Català d’Oncologia, Barcelona, Spain We are able to provide at home, a socio-sanitary keep attending the service. Clinicians had similar assistance, including clinical, psychological and social ‘philosophies to care’ and saw the clinic as a ‘portal’ to Aim: To present an overview about volunteer work in support to the Patients and Families. other services and ‘pivotal’ in facilitating health literacy seven European countries. Results: 23 ANT-OHH are working now in 10 Italian and patient engagement. Participant’s expectations and Method: Data was gathered as part of a European regions, with 153 physicians (oncologist and other experiences were grouped within the key themes of project funded by the PHEA (EU) ´Best practices in

100 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) palliative care in Europe´. The 7 participating countries evaluate the network with respect to organization and questionnaire and a diary. Issues addressed concerned (NL, B, E, F, D, PL, ENG) worked approximately 2 main functions of the resource nurses. volunteers’ activity (number and length of visits, topics month independently on the data collection. First, a Methods: Focus group interview with the executive of visits’, etc.) as well as their motivations, their grey literature search was performed. Additionally, committee (8 members), and questionnaires sent to the feelings, difficulties and satisfactions. Participants were expert opinions were asked in interviews or via e-mail. recourse nurses (83) and their employers (60). 59 palliative care volunteers (N=19) working at a university The amount of experts was limited to a maximum of 10 nurses and 34 leaders returned the questionnaires. hospital in Switzerland. After giving written consent, key persons, who should perform a complete and Results: The resource nurses are highly skilled, they first completed the semi-structured questionnaire reliable overview of the organisations of care. The experienced nurses. Even if they find their role as at home and then the diary every working day for one questionnaire which was used was prepared beforehand resource nurse somewhat unclear, they fulfil the main month. We used content analysis to generate main and included several questions concerning functions. However, they mostly work within their own categories of answers in order to highlight the principal organisation, research and education in palliative care. units. The nurses experience some support from their sets of themes reported by the volunteers. Results: There appeared to be many differences leaders, but very few have time set aside for specific Results: Results indicate that the main difficulties met between the countries in the role volunteers have, their network tasks. The network structure and organization by the volunteers were related to the complexity and education, and whether or not palliative care is were evaluated overall as well functioning, but a closer the variety of situations - patients with various diseases dependent of them. link between the executive committee and the local at different stages -, and to the patients’ short length of Conclusion: This European comparison can be the groups was regarded necessary. stay. However, they derived great satisfaction from the first step to international exchange of knowledge and Conclusion: The network is established and well relationship they had with the patients, and most of experience in the field of volunteer work. functioning, having an appropriate structure. The them reported that they received more than they gave. Keywords: Volunteers, volunteer work, palliative care, resource nurses fulfil their main functions. There are Volunteers’ work and experiences also appear very organisation, Europe. still some challenges connected to role clarification and similar to those described in palliative care units or in guidance. The results show that the network improves hospices. cooperation and strengthens expertise in palliative care. Conclusion: In spite of difficulties palliative care PE 1.F269 No external funding was received. volunteers seem to have found their place in acute care units in a general hospital. This achievement was made Palliative care research in Spain possible in large part by a rigorously defined working PE 1.F271 framework. Planas J1, Farriols C1, Colomar G1, Riera M1, Gallén M2, Albanell J2 “It’s a privilege really to be involved”: 1Institut Municipal d’Assistència Sanitària (IMAS), Community nursing roles, relationships and PE 1.F274 Palliative Care Unit, Medical Oncology Department, identities in primary palliative care Hospital del Mar, Hospital de l’Esperança, Barcelona, Palliative care for mentally disabled people Spain, 2Institut Municipal d’Assistència Sanitària King N1, Melvin J1 (IMAS), Medical Oncology Department, Hospital del 1University of Huddersfield, Behavioural Sciences, Hoenger C1, Probst L2 Mar, Barcelona, Spain Huddersfield, United Kingdom 1Service Santé Publique, Lausanne, Switzerland, 2Cité du Genévrier, St-Légier, Switzerland Aim: To describe the scientific activity in palliative care Aims: research in Spain, as measured by the abstracts - To explore the roles of community nurses in primary Aim: Any professional working in an institution for submitted in four national congresses of Spanish palliative care. mentally disabled people will one day be confronted to Society of Palliative Care (from 2000 to 2006). A - To examine how professional identities and the a resident’s end-of-life. Based on this fact, Palliative secondary aim was to evaluate quality of abstracts of quality of collaborative working impact on such roles. Care Vaud (Cantonal program for developing palliative two of the congresses. Method: A qualitative approach was used to examine care) has set this issue in its priorities. Within the Methods: 1069 abstracts accepted in the four how different groups of community nurses saw their canton, there are 19 institutions for mentally disabled congresses were analyzed. Data collected: number of own and each others’ roles in palliative care. The study people, representing 1300 residents. authors, study design, setting/work center, issues. The was set in three areas with differing populations and Objectives: Develop a pc approach culture in quality of 602 abstracts presented in two of the health profiles. Two main groups of nurses were institutions for mentally disabled people Facilitate and congresses was evaluated. Subjective assessment interviewed - district nursing team members (n=24) and improve accessibility to pc services for this population. included six items: study importance, interest, community matrons (n=15). (Community matrons Improve continuity of care between place of residence connection between title and contents, study design, have case management responsibilities for patients with and care settings (general or pc structures). result and conclusion significance. The six items were complex long-term conditions). The interviews were Methods: Considering the specificity of the mental scored from 0 to 3 (total score range: 0-18). semi-structured and included an in-depth examination disability domain, Health Care Vaud (Cantonal Results: of one case from each participant. Interview transcripts Department of Public Health) has established a Mean authors: 5.4(1-19). were analysed thematically using the ‘matrix’ approach. partnership with a specialized educator, who Study design: 452(42%) descriptive, 224(21%) Results: Relationships between the two groups were collaborates with the 4 pc mobile teams. Her tasks retrospective, 224(21%) prospective, 22(2%) others. problematic. Three factors influenced this: uncertainty consist of: Setting: 175(16%) Home Palliative Care Team, about community matron roles, whether community - Collecting data and create an inventory of actions 434(41%) Palliative Care Unit, 129(12%) Medical matrons had local community experience, and whether already going on in those institutions Oncology Department, 154(14%) other hospital other organisational changes had created tensions. All - Discussing their further specific needs departments, and 179(17%) others. participants agreed that district nursing teams played a - Explaining the possibilities for developing an Topic areas: 234(22%) organization, 69(6%) pain, central role in primary palliative care. District nurses institutional palliative approach and provide support 186(17%) other symptoms, 106(10%) complementary felt they had a case management role for these patients. for the various pc projects therapies/treatment, 101(9%) pharmacology, 51(5%) However, community matrons raised doubts as to how - Developing a inter-institutional collaboration for family, 322(31%) others. effectively district nurses were able to fully carry out empowering the pc resources professionals involved in Obtained mean scores: importance 1.3, interest 1.2, case management, because of the pressure on their pc projects connection to title 1.7, design 1.2, results 1.0, time due to increasing workloads and the reactive, task- - Contributing to develop palliative care basic education conclusions 1.0. Mean total score obtained was 7.5. focused nature of their role. Community matrons saw programs in the field of mental disability. Conclusions: Only 21% of the studies were the value of their case management skills for palliative Indicators prospective. Palliative Care Units presented most of the care, but some district nurses saw little or no role for - Number of professional trained at levels A and B abstracts. Organization and health system issues were them in this area. - Number of institutions which developed pc projects common topics. Mean total score obtained was low. Conclusion: The case management skills of - Number of mentally disabled patients who accessed to Prospective and multicenter studies should be community matrons have much to offer primary specialized services. sessions encouraged to improve research in palliative care and palliative care, but this potential has not been realised Results: The project started in February of 2008. First more stringent criteria for abstract acceptance due to the failure to effectively integrate their work with results will be available end of 2009. (Friday) implemented. that of district nurses. A single integrated team structure Conclusion: The importance of a palliative approach

could enable both groups of nurses to work more in institutions for mentally disabled people seems Poster effectively to support patients. obvious. Nevertheless, it will be necessary to allow time PE 1.F270 for these institutions to fully integrate this approach. The project will therefore extend over a period of 5 Network of resource nurses in cancer and PE 1.F272 years. palliative care: An evaluation study Palliative care volunteers in a general hospital: Hauken M A1, Helgesen R2, Haugen D F2 What are their specific experiences, difficulties PE 1.F275 1Betanien Deaconal University College, Bergen, Norway, and satisfactions? 2Regional Centre of Exellence for Palliative Care, An overview of palliative care in England, an EU Haukeland University Hospital, Bergen, Norway Delaloye S1, Cedraschi C1, Escher-Imhof M1, Lüthy C2, perspective Piguet V1, Dayer P1 Aim: In 2006 a network of resource nurses in cancer 1University Hospitals of Geneva, Division of Clinical Ahmed N1, Noble B1, Vissers K2, Ahmedzai S H1 and palliative care was established in our area, in Pharmacology and Toxicology, Geneva, Switzerland, 1University of Sheffield, Academic Unit of Supportive cooperation between hospitals, health care authorities, 2University Hospitals of Geneva, Division of General Care, Sheffield, United Kingdom, 2Radboud University 22 local communities, the Cancer Society, and the Medical and Rehabilitation, Geneva, Switzerland Nijmegen Medical Centre, Department of nursing college offering specialization in cancer Anesthesiology, Pain and Palliative Medicine, nursing. The aim was to improve cooperation and Aims: According to the example of palliative care units Nijmegen, Netherlands continuity of care and disseminate palliative care and hospices, palliative care volunteers are increasingly expertise throughout the area. The resource nurses are present in acute care units in general hospitals. What Background: There is an urgent need to evaluate and engaged in local clinical services, coordination and are their specific experiences and work? We explored improve the quality of palliative care and to establish system work, and give advice/instruction to their the characteristics of palliative care volunteer work in indicators for the quality of palliative care in Europe. In colleagues. The network is organized with a responsible this particular context. cooperation with 7 participating partner organisations steering committee, an executive committee, and Method: Pilot observational study using a qualitative in 7 European countries (Belgium, England, France, resource nurses divided into 7 local groups meeting methodology. Various aspects of the volunteers’ work Germany, Netherlands, Poland, and Spain) an four times a year. The aim of the present study was to and role were explored by means of a semi-structured international study is being undertaken in order to

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 101 Poster sessions (Friday)

describe ‘best practices in palliative care’. PC services to severely ill. It was one of the first nursing PE 1.F279 Aims: To describe how palliative care is arranged in hospitals in our country; 1996 y.-5 nursing hospitals, England (All participating countries will provide an 2007-59. Patient and carer perspectives of palliative care overview of palliative care organisation in the We became a honorary member of the Information in an acute hospital setting participating countries). Service of St. Christopher Hospital in London (1993). Methods: All participating countries have filled in a Mme Cicely Sounders visited us in 1996. Our physician Ewing G1, Traue D2, Booth S2 questionnaire with organisational aspects of palliative M. I. Poniskaitiene became the member of 1University of Cambridge, Centre for Family Research, care in their country, in order to get a broad view of International Institute and College in USA in 1998. Cambridge, United Kingdom, 2Addenbrooke’s Hospital, several aspects of palliative care, mainly on a national The priority for hospitalization is given to cancer Palliative Care Team, Cambridge, United Kingdom level. For England a total of 28 participants were invited patients and those who are lonely and homeless. to complete an inventory, 10 participants agreed to take Patients suffering from the last stages of cancer and Aims: Patients with cancer and progressive illnesses are part. All communication was via email. A review of the neuromotoric diseases make one third of the overall often admitted to hospital in the last year of life, literature was also undertaken on the organisation and number of patients hospitalized. The index of hospital however there is a dearth of studies of user views of funding of palliative care in England. lethality was 36,1% in 2005 and the index of cancer hospital specialist palliative care services (SPCS). Study Results: Data has been collected and will be presented lethality was 56,4% (in 2006-39,1% and 49,5 %). aim was to describe what patients and carers identify as for England on the following; history of palliative care; Number of patients who need palliative care is growing important in receiving specialist palliative care in a NHS as it is relevant to palliative care; funding; policy; constantly. Possibilities to answer to these needs are not hospital setting. barriers and incentives; availability of drugs; role of sufficient. During 2004-2006 year 1974 patient applied Method: Sample: 12 patients and 10 family carers volunteers; models and organisation of palliative care; for services into Kaunas Nursing Hospital, 536 of them - referred to the SPCS in a large acute hospital trust in education and research. for PC services. 50 percent of registered patients were south of England, recruited on discharge from SPCS. All Conclusions: Following a review of the relevant not hospitalized. 23,6 percent of them chose other had three or more contacts with SPCS for symptom research literatures and an inventory of the national hospitals, 25,2 percent refused for the hospitalization, control/psychological support. quality indicators and guidelines for each participating 40,1 percent died at home, for 11, 1 percent reason was Data collection and analysis: Semi-structured interviews country, a framework and set of international unclear. with patients and carers covering three broad areas; indicators will be established and rated following a We use following principles of PC: enhancing the how they came to be referred to the SPCS, their views of Delphi procedure. The set of indicators established will quality of life; conditions to die with dignity; using the service and its impact on their care in be used to assess palliative care, define best practices multidisciplinary team work; symptoms control; the hospital. Interviews were audio taped and transcribed and compare specific aspects of the palliative care patients and his family is a whole; coordination of care verbatim. Data were analysed thematically using provided both within and across the seven European with Home Care Service; prophylaxis of “burn out” framework analysis. countries. syndrome. Results: Patients experienced shock, uncertainty and Funding: EU supported via the PHEA (Public Health We try to meet the medical, social and spiritual needs vulnerability in the unfamiliar hospital environment. Executive Agency) in 2007. of patients as well as we can. The priest of the local The continuum of support offered by the SPCS was parish celebrates the mass and there are other services important and valued; basic courtesies like provided according to the needs. The students of introductions, inclusive care involving active listening PE 1.F276 Priests’ Seminary help to enhance spirituality of staff and attention to patient and carer priorities as well as and the patients. complex interventions for difficult social and Differences in place of death for cancer patients After legislation of PC services we have wider emotional circumstances. Symptom control input was in two adjacent counties in Norway from 1996 to possibilities to optimize the needs of patients. mainly needed for pain. Patients cared about the 2006 process of symptom control but often did not fully recognise the role of SPCS in this. Some were too Albert E1, Kersten C2 PE 1.F278 unwell to think about it, left it to the doctors or were 1Sorlandet Sykehus Kristiansand, Senter for just ‘glad to have it sorted’. Carers were at a distance; Kreftbehandling, Palliativ Enhet, Kristiansand, Norway, The challenge of creating a palliative care unit in often physically and geographically but also by not 2Sorlandet Sykehus Kristiansand, Senter for a university hospital being fully aware of input. Kreftbehandling, Kristiansand, Norway Conclusion: Patients and carers identified the Julià i Torras J1, Martínez Losada E1, Trelis i Navarro J1, inclusive, individualised approach of the SPCS as highly Background: The majority of people want to be cared Bleda Pérez M1, Riquelme i Olivares M1, Crespo i Bosch M1 valued giving patients and carers a sense of worth in for and die at home. In spite of these wishes, most of 1Institut Català d’Oncologia, Palliative Care Service, the pressurised hospital environment. Awareness of the people dying due to cancer, die in an institution. Badalona, Spain their role in symptom control was less clear. The organisation of the health care system has been Funding: Charitable Trust Funds. highlighted as a major contributing factor to the actual Describing the characteristics of patients admitted to place of death. After 2001, two ambulant palliative care the Palliative Care Unit (PCU) during the first 5 months teams were established in one county (West-Agder) of of work. PE 1.F280 Southern Norway, whereas this was not the case in the Data were prospectively registered and have been neighbouring county (East-Agder). collected from clinical charts. Administrative, clinical, The introduction of a cascade model of Aim: Describe the numbers of home-, hospital- and symptom-related, information and family data are education and support to facilitate use of the nursing home deaths over time in West- and East Agder. considered. 67 patients have been admitted (23% of the Liverpool Care Pathway for the dying patient Highlight how organisational change of care in one of PCS activity). Main diagnostics are lung cancer within the care home environment the counties influenced place of death. (25.71%), brain cancer (12,86%) and colo-rectal cancer Method: Official statistics for cancer patients were (7,14%). 67,14% are men, mean age 67,54 years old. 70% Howard J1, Phillips S1 analyzed. Five (96-00)- and six year (01-06) files on referred from Oncology Service (70%) and Emergency 1Marie Curie Hospice/ Marie Curie Institute, Learning home -, hospital - and nursing home deaths for all 30 Room (ER) (10%). 38% have had a previous contact and Teaching, Liverpool, United Kingdom municipalities in two neighbouring counties were with the PCS. Mean stay at PCU is 11.23 days. Most die analyzed. Differences in place of death in relation to at the PCU (65.71%), 17.55% are transferred to hospice Aim: This project provides a positive example of distance to hospital and access to palliative team were and 17,55% are discharged home. Median number of collaboration between two major organisations compared. uncontrolled symptoms at admission is 4 of the 12 involved in both palliative care and care for the elderly. Results: In West Agder, home - and nursing home systematically explored symptoms (ESAS, constipation The aim was to introduce and evaluate the impact of a deaths rose from 14-18% and 24-30%, respectively. In and dry motuh). Most prevalent are: asthenia (70%), specific model of education and support provided to line with this, the number of hospital deaths declined pain (58%), anorexia (56%), dry mouth (37%) and Care Home staff in the introduction of the Liverpool sessions from 60-51% (p< 0,0001). In East Agder no significant drowsiness (36%). Somatic (38%) and visceral pain Care Pathway for the Dying Patient (LCP) within changes were observed. (33%) are the most common types. 33% have an England. A cascade approach was adopted during the

(Friday) Long distance to hospital was inversely related to Edmonton II pain. Only 18% are admitted in the pilot phase of a larger project aimed at facilitating the hospital death and visa versa with nursing home death terminal phase (death to be occurred in 7 days from phased implementation of the LCP into 125 Care

Poster ( p<0,05). admission). Mean Barthel 20, mean Karnofsky 40%. Homes across the UK. Conclusion: Two palliative teams were established in Mean Pfeiffer test: 2.6 mistakes. Most live with couple Methods: A total of 7 nursing Care Homes participated West-Agder during the period that was studied, whereas (52%) or with couple and sons (22%). 72% refer to have within the pilot phase. A local Key Champion (KC) and this was not the case in East-Agder. A significant good family relations. Valid carer in 37%. 24% of the 2 Regional Project Leads (RPL) from a Central Team increase in home- and nursing home death is observed carers have emotional limitations and 13% physical were appointed to lead implementation. A base line in West - but not in East - Agder from the first to the last limitations. 36% are fully informed meanwhile 17% are review of documented care for dying residents was period. Establishment of palliative teams has probably not. obtained. Bi monthly meetings were held between the contributed to a better coordination and end of life care The profile of our patient is a 67 year-old man with 4 KC and the RPL. The meetings consisted of both group for cancer patients. These results support previous uncontrolled symptoms, with poor performance status, reflection and individual Care Home visits. Qualitative reports, suggesting that the organization of health care without cognitive failure, who lives with his family data was obtained using reflective diaries and focus systems and not patients preferences is a major with good relations to them and who is informed of his groups, quantitative data, with the use of standardised determinant for place of death. clinical condition. documentation aimed at identifying progress, current Although a minority of patients is admitted in the status and specific implementation issues. All further terminal phase, 66% die at hospital. This is attributed to contacts by the RPL were also documented. Data was PE 1.F277 far-advanced disease at admission and delay to transfer evaluated by a National Central LCP Research and to hospice. Intervention of the PCS at the ER may offer Evaluation Team. The development of palliative care (PC) services a faster and earlier integral management of the patient. Results: The model directly influenced a number of in Kaunas Nursing Hospital key areas relating to the introduction of the LCP for the dying resident; change management, progress of Bataitiene E1, Kabasinskiene R1, Poniskaitiene M I1, implementation, professional communication and staff Bucinskiene V1 confidence. Areas for further development were 1Kaunas Nursing Hospital, Palliative Care Department, identified. Kaunas, Lithuania Conclusion: The pilot phase of this project has identified a model which provides appropriate support Kaunas Nursing Hospital was established in 1993 by and demonstrable benefits for residents, families, staff initiative of charitable organisation “Caritas” to provide and organisation. An adapted version of this model will

102 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) now be introduced into the second phase of LCP Results: Focus group themes: number of no complex, and intermediate or agonic implementation. Further work is planned to ensure • Continuity care between social services and health • Need of 1062 beds • 319 beds in units of health for sustainability of the LCP following the use of this funding and between care locations patients “ sharp” or units for patients of larger model. • Coordination of care complexity Project funded by BUPA Giving. • Advocate and support for carer • 531 beds in units for sick crónicos, or of intermediate • Signposting / resource for healthcare professionals complexity • Involvement in rapid discharge planning and • 239 beds in nursing homes PE 1.F281 prevention of readmission. • 133 teams of community support Satisfaction survey: 100% respondents reported high • 102 teams of hospital support Exploration of needs and experiences of patients, (>8/10) level of benefit from social worker input. 50% • 27 teams in units for acute patients or for patients of families and medical staff to inform a palliative wanted the social worker to have been involved earlier larger complexity care service in Bangladesh in their illness. • 44 teams in units for chronic patients or of Activity data: 160 referrals in one year. Reasons for intermediate complexity Dehghan R1, Harding R2 referral: discharge planning (26%), family / carer Medical: 1Kings College London, Palliative Care and Policy, support (18%), financial advice (25%) and crisis • 265 in teams community support / domiciliary London, United Kingdom, 2Kings College London, Dept intervention (31%). • 204 in teams hospital support of Palliative Care, Policy & Rehabilitation, London, Outcome of referrals: 21% helped prevent hospital • 93 in the units of acute patients United Kingdom admission, 19% facilitated discharge, 47% ongoing Nurses psychological support. • 465 in teams community support / domiciliary Background: Needs assessment is crucial to Conclusions: A post previously considered • 357 in teams hospital support development of palliative care services. WHO unnecessary has been shown to be valued by patients, • 239 in the units of acute patients a day. recognizes and strongly supports expansion of carers, health and social care professionals. palliative care worldwide. However, it recommends that the services need to adapt to the special needs in PE 1.F285 resource poor settings. It also acknowledges the lack of PE 1.F283 research in those countries as one of the obstacles in Cross sectional study of acute hospital referrals providing an efficient service. Domiciliary palliative care service of a palliative to the palliative care service Aims and objectives: The aim of this study was to care unit in Brazil assist the palliative care movement in Bangladesh to Clifford M1, Murphy M1, Kelly S1, Hilliard S1 identify success and failure in order to deliver a more Gomes L C1, Naylor C L2, Silva S d P1 1Mercy University Hospital, Palliative Medicine, Cork, effective care to patients, and plan future 1INCa - Instituto Nacional de Câncer, Hospital do Ireland developments. Câncer IV, Palliative Care Unit, Rio de Janeiro, Brazil, Study design: Cross-sectional qualitative interview 2INCA, Palliative Care Unit, Rio de Janeiro, Brazil Hospital Palliative Care services are used with study. increasing frequency. We aimed to assess the Methods: Service providers as well as service recipients Research aims: In the Palliative Care Unit of Instituto distribution of referral sources to palliative care, were interviewed about their palliative care experience Nacional de Câncer (INCA), about 250 patients are identify the reasons for referral and the areas of need. and needs. Semi-structured interviews were carried out taken care in the domiciliary service with de goal of Referral forms over a 3 month period were using a local interpreter. reducing hospitalization and improving patients retrospectively analysed, looking at the source, the Data analysis: Content analysis was performed. quality of life with their families when they require reason for referral, and the symptoms where relevant. Transcripts were organized into general themes, and considerable assistance and frequent medical care. 51.6% of referrals came from oncology, 26.9% from then categories of data were allocated to each theme. Study design and methods: We will describe our acute medicine, 10.8% surgical, 4.3% geriatrics, 4.3% Results: palliative care needs encompassed all the well service and define our patient profile after collecting haematology, 1.1% gynaecology, 1.1% paediatrics. known domains, physical, psychosocial and spiritual. dates during a period of 18 months. A team member 41.9% were referred for symptom control, 20.4% home However, pain control and need for morphine were the collects information in their first visit using a specific care, 10.8% end of life care, 1.1% discharge planning, dominating feature in all interviews. Anger and framework and the results are analyzed every month 8.6% home care follow up and symptom control, 3.2% mistrust towards health care system and health with the whole team. discharge planning and symptom control, 6.5% other, professionals were the unexpected findings in service Results: This domiciliary care service is responsible for 7.5% not documented. Symptom management recipients. Adequate information, but also a multiprofessional assistance (physician, nurse, social accounted for 75% of Geriatric, 50% of Surgical and compassionate and caring communication were worker, psychologist and physiotherapist) for these Haematology, 41.7% of Oncology, and 36% of medical regarded essential. Palliative care staff looked up patients, embracing an area of 50 miles distant from referrals. End of life care accounted for 30% of surgical, specially to India as a role model. Lack of awareness in the hospital divided in 5 regions, each one with a team 25% of Geriatric, 20% of medical and 2.1% of oncology public and professionals was seen as the major barrier. of reference. referrals. Of 27 referrals involving a request for home Lack of availability of morphine was identified as the The service receives every month about 100 new care follow up, 21 came from oncology, 5 medicine, main barrier to pain control. patients, all of them with a performance status under and 1 surgery. Among patients with malignancy the Conclusion: Palliative care needs in Bangladesh are in 50%. Physicians are supposed to make their first visit most common reason for referral was symptom control their content no different to developed countries, into 5 days after they are referred to the service, when (43.2%), while among patients with non-malignant however, the magnitude and intensity of problems and their needs and prevalent symptoms are defined and a disease the most common reason for referral was for their impact are overwhelming. Cancer experience is therapeutic plan prepared. end of life care (41.7%). 50 referrals involved symptom shadowed by poverty and low education/illiteracy, but Nurses are supposed to visit them at least every 5 days control, 24 of which were for a single symptom, 11 for also social injustice and inequality. International to assure that required home assistance in been given, multiple symptoms. In 15 the symptoms were not attention and collaboration with government of that caregivers are able to give adequate daily support, specified. The most common symptom was pain. Bangladesh is needed to simplify narcotic regulations skin care and also to proceed specific non Oncology, who refer to the service most often, tend to and make morphine available. For a wider coverage of pharmacological therapeutically approach to prevalent refer more frequently for home care follow up than end palliative care and its expansion to rural area innovative symptoms. of life care, suggesting they may involve palliative care ideas and strong advocates are required. Social worker helps to identify aim caregiver, gives at an earlier stage in the disease trajectory. It is orientation about their rights and legal responsibilities encouraging that the most frequent reason for referral and is able to return to their houses always when among 5 of 7 specialities was for symptom control. A PE 1.F282 identified their need by any other member of the team. large proportion of surgical referrals were for end of life Conclusion: The aim of the domiciliary palliative care care. Some teams refer infrequently, suggesting that Palliative care social worker: A pilot post to is to accurate the multiprofessional assistance in there may be scope for further use of the palliative care sessions establish the role agreement with our patient profile for the adequate service.

symptom control and improvement for the patient and (Friday) Alloway L1, Gaffney R1 family/ caregivers’ quality of life minimizing 1

North Hampshire Palliative Care Service, Basingstoke, bereavement problems. PE 1.F286 Poster United Kingdom Acute care palliative medicine and discharge Background: Historically the Palliative Care Service PE 1.F284 planning had not benefited from a dedicated social worker in either the inpatient unit, hospital or community team. Palliative care services: A proposal for Portugal Powazki R D1, Walsh D1, Lasheen W1, Lagman R1, Davis The NICE guidance (2003) for Supportive and Palliative M1, LeGrand S1, Russell K M1, Estfan B1, Gutgsell T1 Care recommend that to provide specialist palliative Capelas M1 1Cleveland Clinic, The Harry R. Horvitz Center for care, teams require input from a social worker. A project 1Universidade Católica Portuguesa, Instituto de Ciências Palliative Medicine and Supportive Oncology, was designed to pilot the role, within an established da Saúde, Lisboa, Portugal Cleveland, United States team. Aims: Using as methodology, the protected referencied for Aims: We used electronic databases to report: • To define the role of the social worker within the Goméz-Batiste, Frank Ferris, Herrera, Rocafort, Clark, 1) Patient characteristics in an acute palliative medicine palliative care service. Stjernsward, Higginson, among other, we create for inpatient unit • To determine the acceptability of the post to patients, Portugal a proposal of net of palliative care services. 2) Post acute care (PAC) service utilization carers, health and social care professionals. This proposal has about guiding points: the estimate of 3) Factors influencing discharge planning. • To establish the benefits of the role. patients that you/they would need palliative cares, be Methods: Retrospective electronic databases analysis of Methods: A steering group was formed with oncologic or not oncologic, the number of beds, the 2006 & 2007. representation from social services, specialist palliative number of you equip, of the several typologies, the Results: 1634 admissions. 52% Female; Median age 62 care service, primary care trust and acute hospital. A number of doctors and of necessary nurses. This way, (20-99); 56% Married, 19% Single, 14% Widowed, 10% social worker was seconded to the post for one year. with base in the population of 2007 and died on that Divorced; 27% African-American, 70% White. Length The pilot was evaluated with: year, we need, for Portugal, in medium numbers: of stay (LOS): Median 8 (range 1-103 days). Admit 1. Focus groups with health and social care • 62107 patients to need of palliative care source: Clinic Referral (62%), Emergency Room (21%), professionals, patients and carers. • 14492 patients oncologic to need of palliative care and Hospital Transfer (17%). Payor source: Commercial 2. A patient / carer satisfaction survey. • 9290 patients no oncologic (38%), Medicaid (9%), Medicare (47%), and others 3. Activity data collection. • 21738 complex palliative patients, as well as the same (6%). Readmissions (13%). Discharge dispostion: 21%

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 103 Poster sessions (Friday)

Expired, 18% Home with outpatient follow-up. 61% at patient’s home. 1. Construction of Indicator of AntibioticsXDeath needed 1 or more PAC services. 1802 PAC services Method: It was developed as a tool for data collection a utilization, which measures the percentage of patients (Patient N=1003) were provided: 34% Hospice-home or questionnaire, through which the pharmacist assesses who go to death in use of antibiotics, and were required inpatient (HOS); 14% Home Healthcare Agency (HHA); the level of knowledge about drugs and verifies within 72 hours prior to death; 13% Skilled Nursing Facility (SNF), Sub-Acute, Long adherence to treatment. The caregiver and/or patient is 2. Establishment of microbiological profile of the unit, Term Acute Care, Extended Care Facility; Additional interviewed by the pharmacist at the time of the visit, with disclosure of periodic reports to the team; PAC services: home infusion pharmacy, durable held together with the nursing staff, with an interval of 3. Guideline for utilization of topical and systemic medical equipment, durable medical respiratory, home 7 day visit. metronidazole in controlling the odor of wounds IV antibiotics, transportation. Need for more services Results: In a period of five weeks were performed 27 tumor. predicted by: longer LOS, readmission, visits to 15 patients, where only 3 had no specific 4. A microbiological routine research in patient Medicare/Medicaid insurance, higher case mix index requirements for guidance. The results were: 11 admission with to reduce the spread of multi-resistant (CMI), admission from Emergency Room or a Hospital orientations on how to administer the drug, identifying germs; Transfer. Longer LOS predicted by higher CMI, Hospital 2 occurrences of drug interactions that were modified 5. Standardization and the adequacy of existing Transfer, Medicaid. Readmissions predicted by being after pharmaceutical intervention, adequacy of hours of legislation procedures for cleaning and disinfection of young and single. Predictors of discharge referral: administration of drugs for 5 patients, 4 orientations materials, through the restructuring of the Central of sickest go to SNF or inpatient HOS; females more likely about the risk of keeping inventories at home and self- Materials and Sterilization; to receive HHA; patients referred from other units more medication, 1 report of the Adverse Drug Reactions, 4 6. Preparation of routines for health professionals and likely to go to inpatient HOS. orientations to suit the storage of medicine, 2 several books for patients, caregivers and household Conclusions: Electronic data bases help appraise and guidelines on paper with daily drug administration and companions hospital, with lectures and continuing identify consistent predictors for discharge planning 1 about the danger of self-medication and utilization of education training. and PAC utilization. These findings should phytotherapies without medical advice. This actions leads to: 1) advance hospital throughput, Discussion and conclusion: Preliminary results of 1. Reduction in the overall rate of nosocomial infection 2) help determine patient PAC service needs, this pilot project reinforce the importance of the of 4.7% to 1.7%, 3) improve discharge process efficiency, pharmacist in an interdisciplinary team of health, 2. Reducing of the utilization of AntibioticsXDeath of 4) enhance operational viability of an inpatient allowing an exchange of experiences with positive 20.86% to 11.9%, palliative medicine unit. results, leading to the correct use of medicines and 3. Reduction of hospital Infections of the respiratory contributing to therapeutic adherence, thus raising the tract of 9 cases for 2 cases. quality of service provided to patients. 4. Reducing the incidence of multi-resistant germs in PE 1.F287 positive cultures of 55.3% to 20.4%. Conclusion: Reduce the incidence and severity of Finding the right information about palliative PE 1.F289 nosocomial infection means many of these patients care services free of infectious complications, which cause suffering, Pharmacist insertion in home care service of increase the length of hospital stay and may even Giesen-Nijenhuis C M A1 palliative care unit: A search for rational drug hasten death. We know that in palliative care, the goal 1Agora, National Support Centre for Palliative Care, utilization is not to increase survival, but the contact with the Bunnik, Netherlands hospital service can not be a risk factor for the Trombini L R B1, Barbosa L A2, Barbosa M F1, Pereira L C1, reduction of survival. The database ‘Zorg Kiezen’ (pick and choose care) offers Lima S G G1 accurate and current information about palliative care 1INCa - Instituto Nacional de Câncer, Hospital do services in the Netherlands. Câncer IV, Serviço de Farmácia, Rio de Janeiro, Brazil, PE 1.F291 In Netherlands the institutions that provide palliative 2INCa - Instituto Nacional de Câncer, Hospital do care work together in regional palliative care networks. Câncer IV, Divisão Técnico Científico, Rio de Janeiro, Hospicecare in the Netherlands A best practice website of one of these networks is used Brazil to develop a design for a regional website. Networks Groot M1, Galesloot C1 start a website with this design and supplement it with Introduction: The Home Care Service in a palliative 1Comprehensive Cancer Center, Palliative Care, their own (regional) information about palliative care. care unit has to provide a family living with an Nijmegen, Netherlands Information about palliative care services is an adequate quality of life for terminals patients. In these important part of the regional site. For this purpose the patients, polypharmacy is often necessary, however, In 2007 seven hospice care facilities have kept up a national database ‘Zorg Kiezen’ is developed. On predisposes them to drug interactions and other registration of all of their patients from the moment of established lines information about palliative care adverse events, also facilitated by advanced age and their referral until they were discharged. For this aim a services is saved in the database and published on the comorbidities. web-based application was used, developed by the regional site and several national sites (for example Purpose: To encourage the rational use of medicines, department of palliative care of the Comprehensive http://zorgkiezen.palliatief.nl). Through Google Maps proving the importance of the pharmacist for the home Cancer Centre IKO Nijmegen. Hospice care facilities in visitors can search services in the national database in a care sector of the palliative care unit. the province of Gelderland using this application in specific area around a given place. Method: A retrospective study on pilot scale, in the 2007, consisted of six palliative care units situated in At this moment 66 of the 70 palliative care networks in drug utilization in the unit, through the assessment of residential care facilities (2) and nursing homes (4), one the Netherlands (almost 95 %) participate in this 192 prescriptions in 2005, comparing the results unit in a homecare guesthouse (just-as-home house). system of regional sites and database ‘Zorg Kiezen’ and obtained for consumption in 2006, already with a Most patients referred for admission had a diagnosis of actualize on a regular base information about palliative pharmacist involved in sector. In none of the tests were cancer (80%). Of them, 53% was female and the mean care. considered discarding of drugs. age was 75 years old. At the time of referral 56% of the The database contains data about more than 500 Results: We observed a marked reduction in the patients stayed in a hospital, 29% at home and 6% in a palliative care services, such as inpatient palliative care consumption of some items normally prescribed in residential care facility or nursing home. units, hospices and home care teams. Details of the home care, some of considerable price, such as fentanyl In 75% of all referrals, patients were actually admitted services such as the professionals working in the transdermal. From the comparison between the in a hospice care facility. The main reason (63%) for service, the care provided, number of beds, etc. are requirements of 2005 and 2006, we have seen that the cancelling a referral was the patient passed away before saved in about 75 fields of the database. overall economy was on the order of 20%, an hospice care could be delivered. Another frequently All this means that caregivers, patients and family can important value within the Pharmacoeconomics encountered reason (17%) was admission in another refer to accurate and current information about context. hospice care facility. palliative care in the Netherlands through the database Discussion and conclusion: The pharmacist Most of the included hospice care facilities have a sessions ‘Zorg Kiezen’ and the regional sites of palliative care insertion led to a reduction in the amount of exempted waiting list. 25% of the admissions took place after the networks. The database is appropriate for further products, providing financial benefits to the institution, requested start date. In 50% of the cases waiting times

(Friday) research. and encouraging the rational use of medicines. The varied between one and three days, in 41% between proximity between different health care professionals four and seven days and in 9% more than seven days

Poster give more dynamism and facilitates the exchange of elapsed before admission. PE 1.F288 information, leading to early identification of problems The median length of stay in the hospice care facilities related to drugs or adverse events resulting from was 34,4 days. The mean bed occupancy rate was 72%. Pharmacist actions in a home care service of treatment, regardless of their nature. The patients saw an average of 5,3 caregivers palliative care unit: A new look (professional and volunteer) during their admission and an average of 1,4 medical technologies (e.g. ascites Nogueira T A1, Barbosa L A2, Trombini L R B1, Barbosa M PE 1.F290 puncture or blood transfusion) were used. F1, Lima S G G1, Malveira R R B1 Of the patients admitted in the hospice care facilities, 1INCa - Instituto Nacional de Câncer, Hospital do Infection control in palliative care: The action of 93% died eventually. The remaining patients went Câncer IV, Serviço de Farmácia, Rio de Janeiro, Brazil, the Hospital Infection Control Committee home (3,5%) or moved to another hospice care facility 2INCa - Instituto Nacional de Câncer, Hospital do or nursing home (3,5%). Câncer IV, Divisão Técnico Científico, Rio de Janeiro, Santos P R N1, Azevedo E F1, Barbosa L A2 In 2009 we present figures of 2008 of 20 hospice care Brazil 1INCa - Instituto Nacional de Câncer, Hospital do facilities in the provinces Gelderland and Limburg. Câncer IV, Comissão de Controle de Infecção Introduction: The pharmacist has a key role in respect Hospitalar, Rio de Janeiro, Brazil, 2INCa - Instituto to the medication utilization ensuring therapy Nacional de Câncer, Hospital do Câncer IV, Divisão PE 1.F292 adherence. Factors such as low education level, as Técnico Científico, Rio de Janeiro, Brazil illiteracy and/or cognitive deficits of patients or their Hospice in Ivano-Frankivsk region of Ukraine: caregivers undertake adherence to treatment. Within Purpose: To demonstrate the benefits of the actions of Step by step this context of safe and rational use of medicines, the Hospital Infection Control Committee (HICC) activities pharmacist is an important member of interdisciplinary in a palliative care unit, and its direct impact on patient Andriishyn L1, Malofiy L S1, Vintoniv V1 team of Palliative Care. An area with a population of 21 care. 1Hospice of Ivano-Frankivs’k, Ivano-Frankivs’k, Ukraine patients was chosen to deploy the project to Approach: Descriptive study of the HICC activities of Pharmaceuticals Visit at home. from September 2006 to September 2008, with the The first hospice in Ukraine.The history of Ivano- Objective: To identify the benefits to patients presentation of clinical indicators. Frankivsk hospice began in July 1997, when a special and caregivers through the Pharmaceuticals visit Results: The following actions were taken: decree was adapted by our regional health care

104 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) department and a separate building was given to the PE 1.F294 PE 1.F296 hospice. At present the Ivano-Frankivsk hospice is a stationary Physiotherapy service in a palliative care unit Needs assessment of palliative care in a rural hospital for 30 beds. The hospice team renders free setting: Data from South-eastern Bavaria daily palliative aid to the patients who are in the Baldivieso S1, Cerqueira L2, Silva E1, Sodré J1, Jesus M1, terminal stage of the disease. Most of the patients are Figueira M1, Brandão P1, Stuck P1 Hell J1, Bausewein C2, Fegg M J2, Borasio G D2 adults with cancer and other diseases. Children are also 1INCa - Instituto Nacional de Câncer, Hospital do 1District Hospitals Mühldorf, Mühldorf a. Inn, hospitalized. Every year 250 patients are hospitalized in Câncer IV, Serviço de Fisioterapia, Rio de Janeiro, Brazil, Germany, 2Interdisciplinary Center for Palliative the hospice, every day we serve 30-32 patients. 2INCa - Instituto Nacional de Câncer, Hospital do Medicine, Munich University Hospital - Grosshadern, We also give psychological support to the patients’ Câncer IV, Rio de Janeiro, Brazil Munich, Germany relatives. Our team consists of 3 doctors, 14 medical nurses, 13 junior medical nurses, one social worker, Background: The physiotherapy in the context of Introduction: Most available data on palliative care hospice chaplain, 9 auxiliary workers. Besides, since palliative care, aims to promote the likelihood of cure service provision come from studies in urban settings. January 2005 we have been consulting and treating patients without the face of physical limitations Our aim was to estimate the need for specialized patients at home, giving psychological and spiritual resulting from the progression of the disease, through palliative care services for inpatients and outpatients for support to those who cannot be hospitalized. For this a prevention, the proper control of the signs and three administrative districts in the rural region of special mobile group is organized. It works in Ivano- symptoms and the principles of comfort and quality of south-eastern Bavaria. Frankivsk free of charge.Main problems and life until the time of his finiteness. After the patient Methods: A specifically developed questionnaire was perspectives: transfer to the origin clinic for the palliative unit, many sent to general practitioners and physicians in hospitals - opening of 60 additional palliative beds on Ivano- are the challenges that extend in all processes of care. as well as to head nursing staff (in hospitals as well as in Frankivsk region (including 10 beds for pediatric The unit offers the service in an outpatient, home care nursing homes and outpatient nursing services). oncology and 20 for AIDS patients) and inpatients, with a team of nine physiotherapists. Results: 235 questionnaires were returned (150 - construction of a new building (search for sponsors Objective: To present physiotherapy service in a physicians, 85 head nurses; return rates 38 and 71%, and investors) palliative care unit in all processes of care. resp.). Most respondents reported lack of time (often - creation of a palliative care model in the region Results: According to the clinical indicators collected 45%, very often 23%) and personnel. In the areas of - creation of a hospice at home (there is a great from October to December 2007, the physiotherapy pain and symptom management, advanced knowledge necessary of it) provided care to 343 patients in outpatient clinics, 171 is lacking (e.g. only 15% of physicians use s.c. infusions, - creation of mobile consulting brigades to consult at in home care and 686 in hospital. 58% have never or only rarely used benzodiazepines for other medical institutions Each segment works seeking an individualized care, dyspnea). 55% of general practitioners and 89% of - development of volunteering and within its own characteristics: at the clinic, patients emergency physicians stated that specialized outpatient - scientific work and issuing manuals on palliative have better KPS (Karnofsky Perfomance Status) allowing palliative care teams could prevent unnecessary medicine for greater intensity conducts and even physical hospitalizations at the end of life. In self-assessment, - expanding of palliative and spiritual programs to other reconditioning. With the evolution of the disease the 72% of general practitioners feel confident or very regions of Ukraine. patients are referred for home care in charge of guiding confident in palliative care. However, head nurses Summary: Authors presented: caregivers, to adjust the use of ortheses in their graded the physicians’ competence only a 3.6 on a scale - short historical review of the development of palliative residential environment, train march, avoid from 1 (very good) to 6 (insufficient). Existing hospice care in Ukraine and Ivano-Frankivsk region in osteomyoarticular and respiratory complications by the and palliative care services are highly accepted particular disuse syndrome and guide about the changes at home. (collaboration: rather positive 29%, positive 66%). Still, - important results of the process The patients who have complications, or they need the need for further palliative care services was regarded - work of Ivano-Frankivsk hospice minor surgical interventions are sent to hospitalization, as high. Compared to physicians, nurses indicated an - problems and perspectives in the further expanding of where the physiotherapy will be in control of signs and even higher need for further education in palliative the service. symptoms and measures of comfort. care (pain therapy: physicians 48%, nurses 99%; Conclusion: The physiotherapy is indispensable both communication skills: physicians 56%, nurses 99%). in the rehabilitation of patients in their daily living Conclusion: By asking both doctors and nurses, we PE 1.F293 activities, restoring a sense of dignity and self-esteem by found clear evidence for a lack of palliative care services giving new goals as effectively acting in symptoms and in rural areas. The results of our study show the existing Economic effects of palliative care provided by a discomforts of his specific pathology. Thus, there is a knowledge gaps and the need for new services such as home care support team of an university role of physiotherapy in palliative care service, adding hospital support teams and specialized outpatient hospital in Austria excellence in the treatment. palliative care teams.

Schippinger W1, Spat S2, Pilgram H1, Baumgartner J3, Samonigg H1 PE 1.F295 PE 1.F297 1Medical University of Graz, Division of Palliative Medicine, Graz, Austria, 2Joanneum Research A physician-driven workflow triage model used Developing a palliative care society for South Forschungsgesellschaft, Institute of Medical in an interdisciplinary palliative care Africa Technologies and Health Management, Graz, Austria, community consult team 3Coordination Palliative Care Steiermark, Marston J M1, Fakrodeen S2, Sithole N3, Nortje N4 Steiermärkische Krankenanstalten-Gesellschaft m.b.H., de Kock I H1, Mirhosseini M1, Quan H2 1Hospice Palliative Care Association of South Africa, Graz, Austria 1University of Alberta, Department of Oncology/ Bloemfontein, South Africa, 2Palliative Care Society of Division of Palliative Care Medicine, Edmonton, South Africa, Governance, Durban, South Africa, Introduction: The purpose of this study was to Canada, 2Alberta Health Services, Edmonton Regional 3Hospice Palliative Care Association of South Africa, compare the financial impact of palliative care provided Palliative Care Program, Edmonton, Canada Management-Advocacy, Durban, South Africa, by a home care support team, with inpatient palliative 4Palliative Care Society of South Africa, Governance, care of cancer patients. Aim: Increasing workload and expectations against a Stellenbosch, South Africa Methods: For this retrospective study two groups of background of nursing and physician shortages have cancer patients who had been admitted during 2005 prompted us to search for new models to improve the Aim: Whilst palliative care organisations had a national and 2006 at least once to the ward of the palliative care delivery of care. Striving to improve staff satisfaction association in South Africa, no organisation existed for unit, were defined: and work/life balance were further motivating factors. individuals who are not linked to these organisations. A 1) an intervention group (IG) of patients (n=60) who We proposed a computerized physician-driven triage Palliative Care Society of South Africa has been formed received palliative care by the home care support team system as an alternative to the pre-existing nurse-driven to promote, elevate and advocate for palliative care sessions for at least 45 days in 2005 and 2006, and model. practitioners with the vison of “Palliative Care for All,

2) a control group (CG) of patients (n=60) who received Method: We designed a computer program to capture by All”. (Friday) inpatient care only. All patients included in this analysis the different aspects of patient consultation, such as Method: In 2005 the first meeting of intent was called

died in 2005 or 2006. referral request, date of service, patient demographics, in Johannesburg for those interested in developing a Poster Patients of the two groups were matched according to responsible consultant and type of service provided. society to promote the interest of individuals in age, sex and tumour type. Data of expenditures from all This program is now used by physicians to triage the palliative care. A steering group was estalished with public federal state hospitals and datasets of the largest workload in order to provide timely and appropriate representatives from different organisations and compulsory health insurance institute of the federal medical care to our palliative patients in the provinces. The mssion of the Palliative Care Society of state, including follow-up costs were considered. community. South Africa is to promote, elevate and advance the Healthcare costs were allocated to expenditures for Results: We will report on the impact of this model on practice of palliative care in South Africa, through inpatient care, costs for outpatient care (general our daily workflow and workload. We will comment on research, education, public awareness, a monthly medicine, specialised medicine, drugs, assistive the impact of this model on division of the workload, newsletter, and local discussion groups. The first technology, patient transports) and costs of the home time availability for other scholarly activities (e.g. Annual General Meeting was held in Durban, and care support team. Healthcare expenditures in the two education, research), work/life balance, impact on portfolios: Education; Children; Advocacy; Fundraising; last months of patients´ lifes were compared between allied health professionals, as well as staff satisfaction. Bio-Ethics; Communication established. The PCSSA the IG and the CG. We will discuss the future applications of the newly works closely with the Hospice Palliative Care Results: In the IG mean costs for inpatient care were created data set. Association of South Africa and other oprganisations statistically significantly lower compared to the CG (¤ Conclusion: This innovative model is one of the first providing palliative care, but is not a palliative care 5,843 vs. ¤ 7,502 / -22.1% / p=0.035). Mean costs for of its kind and may have application for other Palliative provider itself. outpatient care were statistically not significantly Care programs that provide care in diverse settings. This Results: A strong and growing society to support higher in the IG (IG: ¤ 1,391; CG: ¤ 1,106 / + 25.8% / system will be used in conjunction with SNOMED individuals working in palliative care and to promote p=0.063). Mean expenditures for the home care support computer language to create a Palliative Care related palliative care in South Africa. team were ¤ 1,290 in the IG. Healthcare costs were vocabulary to enhance communication between Conclusions: National organisations should recognise approximately the same in the two patient groups (IG: different databases. the importance of professional associations for ¤ 8,524; CG: ¤ 8,608 / + 1% / p=0.988). individual practitioners in palliative care. Conclusions: Results of this study demonstrate that palliative care by a home care support team is self- financing due to savings in inpatient care during the two last months of life in cancer patients.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 105 Poster sessions (Friday)

PE 1.F298 PE 1.F300 PE 1.F302

Expanding the reach of palliative care in South Advantage of early induction of controlled- Intercostal nerve block combined with pulsed Africa release oxycodone to control head and neck radiofrequency in the treatment of intercostal cancer pain caused by irradiation neuralgia Gwyther L1, HPCA Management Committee 1Hospice Palliative Care Association of South Africa, Takase H1, Sakata T2, Yamano T2, Sueta T2, Nakagawa T2 Nakatani T1, Kushizaki H2, Hashimoto T2, Motooka A2, Cape Town, South Africa 1Fukuoka University, Department of Pharmacy, Koshikawa K2, Saito Y1 Fukuoka, Japan, 2Fukuoka University School of 1Shimane University Faculty of Medicine, Aim: An evaluation of organisational development Medicine, Department of Otorhinolarynogology, Anaesthesiology, Palliative Care Centre, Izumo, Japan, strategies of the Hospice Palliative Care Association Fukuoka, Japan 2Shimane University Faculty of Medicine, (HPCA) to increase the reach of palliaitve care in South Anaesthesiology, Izumo, Japan Africa. Research and aims: Radiotherapy for head and neck Methods: In South Africa, Palliative Care has cancer usually induces mucositis, which reduces the Introduction: Many patients suffer from intercostal traditionally been provided by the NGO sector. The quality of life (QOL) of patients by causing pain and neuralgia caused by metastatic cancer or thoracotomy. HPCA vision of ´Quality Palliative Care for All´ is only interfering with eating. Moreover, ongoing treatment Intercostal nerve blocks are widely used to reduce the achievable through the integration of palliative care has to be interrupted. The comparative study of neuralgia symptoms. In general, an intercostal nerve into all health care settings in South Africa. historical cohorts was performed to examine the block is performed using local anaesthetics. To obtain a This study reviews the different initiatives implemented effectiveness of early use of low-dose controlled-release prolonged nerve block effect, alcohol blocks or by HPCA to promote the integration of palliative care oxycodone (CRO) in patients with mild pain. radiofrequency thermocoagulation are used as into the formal and informal health care sector. The Study design and methods: The patients were those neurodestructive methods. These cause nerve injury assessment tools for evaluation of health care service, hospitalized in our University Hospital with a diagnosis followed by sensory disturbance. Pulsed radiofrequency mentorship activities and before and after of head and neck cancer between April 2004 and March (PRF) for neuromodulation has been applied to the competencies of health care workers are described 2008. They were classified into the group with mild dorsal root ganglions. This method produces pain relief against a background of advocacy in the development pain started on CRO (MILD) (n=52) and the group with without adverse side effects, such as neurological of palliative care policy in South Africa. Three different moderate pain at the time CRO was started damage due to thermal destruction. The application of settings are used in the assessment : NGO supported by (MODERATE) (n=32). The control group (CONTROL) PRF to peripheral nerves is thought to be safer than hospice, independent NGO, Government hospital. consisted of patients given non-opioid analgesics only, nerve root blocks. We use this treatment for intercostal Quality of care as a measure of effective palliaitve care is who were hospitalized in our University Hospital neuralgia on peripheral nerves to obtain effective pain documented through audit of services using the APCA between April 2002 and March 2004(n=38). relief with fewer complications. African POS as an audit tool. Results: The dietary intake, calorie intake, and rate of Methods: We treated 4 patients with intercostal Results: Intergration of palliative care into the NGO patients on a regular diet decreased in all groups as the neuralgia caused by cancer or thoracotomy. They had sector is successfully documented, quality of care is irradiation dose increased. The dietary intake and been referred to us due to refractory pharmacotherapy. dependent on support by hospice or HPCA staff. calorie intake were significantly higher in MILD than in PRF treatment was done at a setting of 2Hz for 120 Hospital services are slower to integrate palliaitve care CONTROL and MODERATE. The rate of patients on a seconds at 20 ms current cycles on each intercostal for a variety of reasons. regular diet was significantly higher in MILD compared nerve, using an insulated needle with an active tip. Conclusion: There is good support for the integration with CONTROL and MODERATE after 25Gy, while After the procedure, small amounts of local of palliaitve care into both formal and informal health there was no significant difference between CONTROL anaesthetics were injected to the intercostal nerves. We care sector with many requests for mentorship received and MODERATE at a dose of 60Gy. The rate of weight defined a clinically successful block as one achieving by HPCA. A successful model of integration has been loss was significantly lower for MILD than for greater than 50% pain relief measured by visual developed and can be implemented in different health MODERATE or CONTROL. The occurrence of side analogue scale. We noted any adverse side effects, and care settings. effects was similar in all groups. interviewed the patients as to their satisfaction with the results of the treatment. Results: All patients felt immediate pain relief after PE 1.F299 PE 1.F301 blocking. Three of the 4 patients have experienced lasting pain relief and have expressed satisfaction with Experience of switching from transdermal Assessment of advanced cancer patients pain in the treatment. There were no severe adverse side effects. fentanyl, morphine or diamorphine to Georgia The one patient who was refractory to the PRF therapy methadone: Can equianalgesic dose ratios be had pleural dissemination. determined? Shavdia M1, Ghvamichava R2, Abesadze J2, Metivishvili G1, Conclusion: Intercostal nerve block combined with Shavdia N3 PRF has the potential to be a useful technique for Marlow C E1, Bowen J C1, Ritzenthaler B M E1 1Cancer Prevention Center, Clinic of Palliative Care, reducing intercostal neuralgia without adverse side 1Compton Hospice, Wolverhampton, United Kingdom Tbilisi, Georgia, 2Cancer Prevention Center, Tbilisi, effects. Georgia, 3Highest Medical School AIET, Tbilisi, Georgia Aim: Opioids are used in the management of moderate to severe cancer pain, morphine usually being the Objectives: Although pain assessment is a vital PE 1.F303 opioid of first choice. The role of opioid switching to preliminary step towards the satisfactory control of improve pain control and toxicity has been well cancer pain, data on the prevalence of different pain Cases of successful pain control by switching documented. Equianalgesic dose ratio information syndromes are rare. The present study surveys 730 from transdermal fentanyl to controlled-release exists to guide conversion between most opioids, but advanced cancer patients treated by a pain service oxycodone there is lack of consensus with regard to methadone. following the WHO guidelines for relief of cancer pain. For this reason an ad libitum schedule adapted from Methods: In a prevalence study, ECOG performance Sakashita Y1 the Morley-Makin protocol is used by the authors, with status and visual analogic scale (VAS). 1Chiba Cancer Center, Palliative Medicine, Chiba, Japan methadone being individually titrated rather than Results: From the start of the research, from 838 calculated from a ratio based on the previous opioid advanced cancer patients 730 (87,1%) had pain. From Introduction: Transdermal fentanyl (TF) is dose. The aim of this study was to determine whether that, patients 294 (40,3%) had severe pain (VAS 0-3), commonly used for pain control because it has fewer the day 7 methadone dose after switching could have 222 (30,4%) - moderate pain (VAS 3-5,5), 214 (29,3%) adverse effects, such as constipation, nausea, and been predicted from the final oral morphine equivalent had mild pain (VAS 5,5-10). The mean point of pain in sleepiness, compared with morphine. However, pain daily dose (MEDD) of the prior opioid. The day 7 the patients (730) who participated in the research was control with TF is difficult in some patients. But as sessions methadone dose was chosen as, in the authors’ 5,5 by VAS. From 730 patients with pain at ECOG scale shown below, we obtained a favorable response by experience of using an ad libitum titration method, I-II gradation was reveiled in 146 patients (20,0%), at switching to controlled-release oxycodone (CRO).

(Friday) requirements tend to have stabilised by this time point. scale III gradation - 221 cases (30,3 %), at scale IV Case 1: A 41-year-old woman with recurrent uterine Method: A retrospective analysis of medical notes was gradation - 363 (49,7%). From 146 patients with pain at cervix carcinoma and severe pain in the lumbar region

Poster carried out for patients admitted to the hospice (1997 - ECOG scale I-II gradation 8 (5,5%) had severe pain, 44 and lower extremities. A remarkable reduction of pain 2007) for a switch from transdermal fentanyl (n=28), (30,1%) - moderate pain, 94 (64,4%) - mild pain; From was obtained by switching from TF 4,800mcg/day to morphine (n=32) or diamorphine (n=15) to 221 patients with pain at scale III gradation - 63 (28,5%) CRO 240mg/day (75% of the equianalgesic dose). methadone. Reason for change, opioid doses and an had severe pain, 88 (39,8%) - moderate pain, 70 (31,7%) Case 2: A 54-year-old man with a primary tumor of estimate of pain relief were recorded. - mild pain; From 363 patients with pain at scale IV unknown origin and multiple bone metastases. He had Results: In most cases the documented reason for a gradation - 203 (55,9%) had severe pain, 95 (26,2%) - severe lumbar pain. A favorable pain control was switch to methadone was tolerance to the previous moderate pain, 65 (17,9%) - mild pain. 377 (51,6%) obtained by switching from TF 6,000mcg/day to CRO opioid. Median age was 56 years (range 22 - 74 years); presented with nociceptive, 32 (4,4%) with neuropathic 240mg/day (60% of the equianalgesic dose). male to female ratio was 1.2:1. The MEDD prior to and 321 (44,0%) with mixed (nociceptive and Case 3: A 62-year-old woman with pancreatic switching ranged from 180mg to 3900mg with a neuropathic) pain. Analgesic treatment resulted in a carcinoma and carcinomatous peritonitis. She median dose of 800mg. Analysis of the final MEDD and significant pain relief in all groups of patients, as the complained of severe abdominal pain. A successful pain the total day 7 methadone dose from all 75 patients mean pain intensity (NRS) decreased from 6,0 control was achieved by switching from TF revealed a Spearman correlation coefficient of 0.23 (nociceptive), 6,5 (mixed) and 7,2 (neuropathic) on (1,800mcg/day) to CRO 40mg/day (33% of the (p=0.05). Pain relief was estimated as ‘same’ or ‘better’ admission to 2,0, 2,5 and 2,9 after 3 days and 1,0, 1,5 equianalgesic dose). There were also other cases in in 94% of cases post switch. and 2,0 at the end of survey. addition to these three cases. In all such cases, pain was Conclusions: The weak positive correlation between Conclusion: associated with neuropathy, bone metastasis, or MEDD and the total day 7 methadone dose suggests the 1. The variety of pain syndromes evaluated in our carcinomatous peritonitis. need for careful individualised titration rather than patients confirms the importance of comprehensive Discussion and conclusion: Opioid rotation to CRO relying on equianalgesic dose ratios when switching to pain assessment prior to treatment; in patients who responded poorly to TF therapy led to methadone. 2. Cancer pain is not intractable and can be relieved in successful pain control at doses lower than the the majority of patients by treatment following the equianalgesic dose. Opioids are often regarded as poorly WHO guidelines. effective against pain associated with neuropathy, bone metastasis, or carcinomatous peritonitis. However, in the present cases the efficacy of CRO differed from that of TF, indicating different mechanisms of action. Thus, patients for whom TF shows an insufficient analgesic

106 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) effect would not require a mere dose increase but an provide fatigue relief. mean pain score at the start of HM treatment was 5.6 appropriate therapeutic strategy, including opioid Study supported by The National Council for Scientific and (sd=2) and at t1 2.6 (sd=1.6; p<0.0001). In this group rotation to CRO, according to the pathological Technological Development (CNPq) and The State of Sao the median dose of HM remained stable (48 mg). The condition of each patient. Paulo Research Foundation (FAPESP). median duration of successful parenteral use of HM among the 36 patients was 37 days (range:2-338), somewhat shorter than the median survival period of PE 1.F305 PE 1.F307 61 days. Conclusion: In patients with serious cancer pain, Absolute bioavailability and transmucosal Pharmacological differences of opioids parenteral continuous administration of absorption of fentanyl from the BEMA delivery regarding their efficacy against bone cancer hydromorphone is an effective alternative without dose system pain escalation.

Tagarro I1, Finn A2, Bieberdorf F A3 Aruga E1 1Meda Pharma, S. Fernando de Henares, Madrid, Spain, 1Teikyo Univ. School of Medicine, Dept. of Palliative PE 1.F309 2BDSI Inc, Raleigh, North Carolina, United States, Medicine, Teikyo cancer center, Tokyo, Japan 3CEDRA Clinical Research, Austin, Texas, United States Effectiveness and tolerance of transdermal Background and purpose: Opioids are the mainstay fentanyl in oncologic pain Objectives: The objectives of this study were to analyze therapy for bone cancer pain management, but the the absolute bioavailability of fentanyl from the BEMA clinical response varies widely. We examined the Ferrer Perez A I1, Serrano S1, Tobeña M1, Vidal M J1, Polo E2, delivery system (buccal soluble film), to determine the pharmacological differences of opioids through opioid Lambea J1, Pajares I1, Lopez D1, Tres A1 percentage of fentanyl dose that is absorbed through rotation. 1Hospital Clínico Lozano Blesa, Oncología Médica, the buccal mucosa, as well as to compare the fentanyl Methods: This was a prospective observational study. Zaragoza, Spain, 2Hospital Ernest Lluch, Oncología plasma concentration profile following multiple BEMA Four patients with bone pain who required opioid Médica, Calatayud, Spain Fentanyl units with an equivalent dose administered as rotation to oxycodone because of inefficacy and/or a single unit. adverse events were enrolled in this study between Aim: Successful management of pain in the cancer Methods: Open-label, single-dose, 4-period, Latin- September 2006 and August 2007. They did not receive patient requires careful assessment of the components square, crossover study in 12 healthy volunteers. The any cancer therapy within two weeks to reduce their of the pain complaint and accurate diagnosis of the study consisted of a screening visit and a 12-day pain. Their primary lesions were malignant lymphoma, cause of pain. Symptomatic management of pain inpatient treatment period in a Phase 1 unit. Each malignant myeloma, colon cancer and liver cancer, and involves pharmacotherapeutic strategies that focus on subject received 200 μg fentanyl citrate IV, 800 μg the primary sites of pain were the cranium, spinal opioid use. Factors influencing the choice of opioid in fentanyl citrate oral, 1 x 800 μg BEMA Fentanyl buccal, compression fractures and iliac bone fracture. They patients with cancer pain include the severity of pain, and 4 x 200 μg BEMA Fentanyl buccal, administered 72 were converted to controlled-release oxycodone from response to previous analgesic therapy and available hours apart. Subjects received naltrexone throughout morphine or fentanyl. Pain intensity, safety profile and formulations. Long-term opioid prescription usually is the study period to block the respiratory depressive opioid daily dose at baseline and after opioid rotation condicionated by side effects. We present our service effects of fentanyl. were evaluated. experience on starting and switching opioid treatment Results: Twelve subjects (6 males and 6 females) with a Results: Pain intensity markedly decreased after opioid with transdermal fentanyl for cancer pain. mean age of 27.3 years (range 19 to 37 years) were rotation in all patients. Drowsiness and constipation Methods: From February to September 2008 a total of enrolled and treated. All 12 subjects completed the were also improved after switching to oxycodone. The 28 cancer patients who began pain treatment with study. The study population was 50% Black, 33% effective daily dose of oxycodone varied from 10 to 80 trasndermal fentanyl (TF) were assessed. The Caucasian and 17% Hispanic. mg, which was about 25 to 40% lower than the general effectiveness and tolerance of such treatment is The absolute bioavailability of fentanyl resulting from equianalgesic dose of the previous opioids. Besides, prospectively evaluated. BEMA Fentanyl administration was 71%, compared to improvement of quality of life and an economic benefit Results: Prior to treatment with TF, of the 28 patients 35% after oral administration. Approximately 51% of were obtained. evaluated, 15 of them (53.6%) were being treated by the the total fentanyl dose was absorbed through the Conclusions: These results suggest that oxycodone has first analgesic step; 6 patients (21.4%) were being buccal mucosa. There were no significant differences in a specific pharmacological profile compared to treated by the second step and 7 patients (25%) were the rate and extent of absorption following morphine and fentanyl. Further investigation is being already treated by third step, but with a different administration of an 800 μg dose as either a single dose required to confirm the superior efficacy of oxycodone drug from TF. 50% (14 patients) began treatment with unit or as multiple smaller dose units. No gender regarding bone cancer pain. Opioid receptor binding TF at a dose of 25 mcg/h; 10.8% (3 patients) needed a differences were seen in fentanyl exposure following affinity, absorption and response to neuropathic higher dose than 50 mcg/h. A 43.2% (13 patients) BEMA Fentanyl administration. No SAEs or AEs leading elements may contribute to the differences in opioid related improvement of their pain (as measured by VAS to premature discontinuation were reported. efficacy. Opioid rotation is considered effective to scale) and 57.1% (16 patients) required a rising of dose Conclusions: The BEMA system allows an efficient improve refractory cancer pain, but the conversion dose of TF in the second follow-up visit. A 78.6% (22 and highly reproducible delivery of fentanyl through should be carefully titrated based on opioids patients) not mentioned any side effect which could the buccal mucosa. The overall safety profile of BEMA differences. deteriorate their quality of life. There were no severe Fentanyl resulted similar to the known safety profile of side effects during the follow-up of patients. fentanyl in other formulations. Conclusion: TF is a safe third analgesic step treatment PE 1.F308 at the usual prescribed dose, either in patients who have previously used opioids or in those who do not. It PE 1.F306 Effectiveness of continuous parenteral is also an effective treatment for pain management in hydromorphone in advanced cancer patients cancer patients with few side effects in short and Pain and fatigue: Do they really influence each failing on standard opioids medium term. other? Oldenmenger W H1, Jager A1, Lieverse P J2, Taal W3, Van Lamino D A1, Mota D D C F2, Kurita G P3, Pimenta C A M1, der Rijt C C1 PE 1.F311 Pain, Symptom Control and Palliative Care Research Group 1Erasmus MC, Medical Oncology, Rotterdam, 1School of Nursing University of Sao Paulo, Sao Paulo, Netherlands, 2Erasmus MC, Anesthesiology, Rotterdam, Use of methadone as a co-opioid in managing Brazil, 2Cancer Institute State of Sao Paulo, Sao Paulo, Netherlands, 3Erasmus MC, Neurology, Rotterdam, difficult pain: Review of 2 years of use within an Brazil, 3Rigshospitalet, The Multidisciplinary Pain Netherlands inpatient hospice to explore its value Centre, Copenhagen, Denmark Aim: In patients with severe cancer-related pain, Hagena A1, Midgley C J1 sessions Aim: Pain and fatigue are frequent in cancer and it is a continuous parenteral administration of opioids is 1Saint Francis Hospice, Palliative Medicine, Romford, common belief that they influence each other. The often required. Hydromorphone (HM), compared to United Kingdom (Friday) objective of this study is to analyse the comorbidity other opioids, has a higher analgesic potency. During

between pain and fatigue in women with breast cancer. the last years, in our clinic patients who failed on high Methadone as a co-opioid was introduced into our Poster Methods: Cross-sectional study. Non-probabilistic doses of opioids were treated with parenteral HM. We hospice practice in April 2005, with a supporting policy sample composed of 182 women with breast cancer performed a retrospective study in which the efficacy of to guide as to when to initiate, how to initiate, and under ambulatory care, in any treatment or disease parenteral HM was investigated among patients with titration. Controlled drug records for inpatients from phase (means: age = 52.8 y; years of school = 12.4 y). advanced cancer and serious pain who failed to achieve then on, to end March 2007 identified all patients Data were collected from July 2006 to March 2007. adequate pain relief on opioids, other than parenteral using methadone (orally or subcutaneously) during Fatigue was assessed by Revised Piper Fatigue Scale (0 to HM. their stay. Their notes were then analysed. Patient 10) and pain intensity by Numeric Scale (0-10). Fatigue Methods: Between December 2004 and December characteristics (age, diagnosis, pressing symptom) were and pain scores were classified in 0.1 to 4.9 = mild, and 2007, 44 patients, who were admitted to the acute noted; also drugs tried prior to initiation of methodone. 5.0 to 10.0 = moderate or severe. Zero was not palliative care unit, were treated with parenteral HM. Annotation re. initiation and titration was compared considered in the correlations. Statistical analyses were Mean pain intensity at rest NRS (0-10) was daily with recommended (policy) practice, and the effect of performed by Student´s t-test, Pearson´s correlation assessed. The moment pain was adequately controlled the addition of methadone was searched for both in coefficient, and differences were considered significant (t1) was defined as the first day of at least 3 consecutive descriptive text and by study of patients’ drug charts. when P<0.05. days during which HM yielded an average daily pain Notes were searched for any recording of toxicity or risk Results: Fatigue was reported by 94 women (51.6%), score of 4 or less and tolerable side effects. issues as a result of use. from which 44 (24.1%) had moderate to severe fatigue Results: The reasons for rotation to parenteral HM 758 inpatients were cared for in this time. 36 were (total score ≥ 5). Pain was reported by 86 women (n=44) were inadequate pain control (n=10), severe initiated on methadone-in every case as a co-opiod. Not (47.2%), from which 50 (27.4%) had moderate to severe opioid-related side effects (n=16), and reaching the all benefitted but there was profound symptom pain (total score ≥ 5). The comorbidity fatigue and pain maximum feasible volume of parenteral infusion of improvement with low dose methadone in a few with happened in 20.8% of the sample and the correlation other opioids (n=18). Before switching to HM, the very difficult pain who had tried multiple opioids and between fatigue and pain was 0.379 (P=0.003). The median daily oral morphine equivalent dose was 600 coanalgesics already. Some patients became toxic: some presence of pain increased fatigue (P=0.012), but the mg (range:80-1620 mg). At start the median daily dose without benefit from methadone (thus stopped), but in presence of fatigue did not influence pain (P=0.644). of HM was 48 mg (range:12-216 mg). Adequate pain two cases toxicity resolved with dramatic reduction in Conclusion: Fatigue and pain were frequent in women control was achieved in 36 patients (82%) within a baseline opioid, without loss of comfort. Three drug with breast cancer, occurred in comorbidity and pain mean of 6 days. Eleven of these patients still had side errors occurred, in all cases for patients after discharge aggravated fatigue. Therefore, pain treatment can effects at t1, but they were scored as tolerable. The home. One stopped methadone, not realising it was a

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 107 Poster sessions (Friday)

key drug. One local pharmacy dispensed the wrong chronic) was assessed from V1-V4 using a numerical PE 1.F315 strength methadone concentrate, and one patient rating scale (NRS), toxicity was assessed from V1-V4 made a mistake with what dose to take regularly and using the NCI CTC v3 criteria, and QoL was evaluated Optimization of pharmacotherapy of pain in what to take as needed for breakthrough pain. at V1 and V4 using Brief Pain Inventory (BPI) palliative medicine Conclusion: Methadone as a co-opioid has been a questionnaire. For each daily activities considered by valuable intervention for some of our patients with BPI the score was from 0 (no interference) to 10 Woron J1, Filipczak-Bryniarska I2, Wordliczek J2, most difficult pain. The policy has required alteration (complete interference). From May to October 2008 Dobrogowski J3 to best support clinicians, pharmacists and patients in (the study is still ongoing) 13 patients were enrolled 1Jagiellonian University School of Medicine, minimising risk of drug errors. Numbers involved were (M/F 3/10; mean age 65.1) and 11 patients completed Department of Clinical Pharmacology / University too few to be able to provide guidance on what future the study. The mean decrease in pain from V1 to V2 was Centre for Adverse Drug Reactions Monitoring and patient might benefit from this intervention but with 3.7 NRS (from 7.9 of V1 to 4.2 of V2) (p<0.001). The Investigation / Department of Pain Treatment and some profound successes we continue with it. decrease observed between V1 and V3 and V4 was Palliative Care, Krakow, Poland, 2Jagiellonian University similar to that between V1 and V2 (p=0.000 and School of Medicine, Department of Pain Treatment and p=0.000, respectively). At V1 the interference of pain Palliative Care, Krakow, Poland, 3Jagiellonian University PE 1.F312 involved all the daily activities considered by BPI. At V4 School of Medicine, Department of Pain Therapy and the interference of pain was reduced achieving a Research, Krakow, Poland Sublingual methadone for breakthrough cancer statistically significance only for “sleep” (p=0.017) and pain: A randomized clinical trial is not feasible “walking capacity” (p= 0.022). The treatment was safe: Introduction: Pain is one of the most common but the treatment appears effective only grade 1-2 toxicities were observed with a peak of disorders complained about by palliative patients. The 45.4% for both mouth dryness and somnolence and basic method of treating pain is pharmacotherapy. One Hagen N1, Moulin D2, Watanabe S3, Brasher P M A4, Stiles 36.4% for constipation. of the most frequently used analgesics are nonsteroidal C5 Conclusion: H OROS® was effective in improving anti-inflammatory drugs (NSAID), whose application in 1Alberta Cancer Board and University of Calgary, moderate-severe pain in a selected population of opioid case of palliative patients is encumbered with a Medical Oncology, Calgary, Canada, 2University of naïve cancer patient, safe and able to reduce the significant risk of adverse effects and interaction with Western Ontario, Oncology and Clinical Neurological interference of pain on QoL. other, simultaneously administered drugs. Sciences, London, Canada, 3Alberta Cancer Board and Patients and methods: The analysis pertained to 76 University of Alberta, Oncology, Edmonton, Canada, reports on post-medication adverse effects with 4Vancouver Coastal Health Research Institute and PE 1.F314 palliative patients which were received by the University of British Columbia, Centre for Clinical University Centre for Adverse Drug Reactions Epidemiology and Evaluation, Vancouver, Canada, Continuous intrathecal infusion for intractable Monitoring and Investigation in Krakow between 01st 5Alberta Cancer Board and University of Calgary, cancer pain January, 2007 and 31st December, 2007, which were Calgary, Canada related to the administration of analgesics. In 36 cases Fukushige T1, Yamamoto Y2, Yamada S2, Sano T3 (47,4%) the adverse effects appeared as a result of Background: Breakthrough cancer pain is prevalent 1Kurume University Hospital, Palliative Care Center, administering one analgesic; in as many as 24 cases ( and difficult to manage; episodes of pain can suddenly Kurume City, Japan, 2Kurume University, 31,5%) patient at the same time applied 2 NSAIDs, what become severe, making it challenging to manage with Anesthesiology, Kurume City, Japan, 3Kurume has to be considered as a pharmacological error, slow-onset, strong opioids administered by mouth. An University Hospital, Palliative Care Team, Kurume City, however in 16 cases ( 21,1%) the adverse effects ideal breakthrough pain medication would be effective Japan appeared as the subsequence of unwanted interaction within a few minutes. among drugs administered simultaneously. Methods: A multicentre, open label, feasibility study Even using cancer pain management according to Results: In all 76 cases the analgesics treatment was exploring sublingual methadone for cancer related World Health Organization methods, pain can be modified taking into consideration the existing risk breakthrough pain was undertaken. The primary difficult to control in some patients, such as those with factors of appearance of post-medication adverse objective was to demonstrate the feasibility of a novel recurrent intrapelvic cancers. We retrospectively effects. It has to be noted that in as many as 52 cases clinical trial model in preparation for a definitive evaluated the effectiveness of continuous intrathecal (68,4%) prior to the analgesic treatment the risk factors randomized trial. This model included screening, infusion of morphine with local anesthetics in 20 of appearance of adverse effects were known, which upward titration of methadone, and assessment of patients, along with histopathological changes in spinal had not been taken into consideration in planning optimal dose, with each episode of pain treated as a cord after intrathecal infusion in 5 cases. pharmacotherapy of pain. It has to be added that 48 separate data set. Secondary objectives were to Cases and methods: Subjects comprised 20 patients cases (63,2%) of adverse effects which occurred in demonstrate proof of analgesic concept, with targets of (10 men, 10 women; mean age, 59.0 years). Primary pharmacotherapy of pain have been qualified as severe half of patients obtaining meaningful pain reduction disease was rectum (n=6), nephroureter and prostate and they required treatment in ambulatories and within 5 minutes and ≥60% of individual breakthrough (n=3 each), cervical and breast (n=2 each) and others hospitals. episodes successfully treated within 30 minutes. (n=4). All patients reported severe pain in the buttocks Conclusion: Individualization and optimization of Meaningful pain reduction was defined as a ≥2 point to lower extremities. pharmacotherapy of pain at palliative patients enables or≥30% reduction of pain. In 9 cases, a polyurethane epidural catheter was us to increase the effectiveness and safety of Results: Over 2 years, approximately 1800 patients inserted subarachinoidally and an access port was administered treatment and to decrease a risk of adverse were screened for inclusion from three sites across implanted subcutaneously. In 11 cases, a polyamide interactions of medicines in polytherapy. Canada; 9 patients entered the trial, 5 reached optimal resin epidural catheter was used and a subcutaneous dose and 85 individual episodes of breakthrough pain tunnel about 30 cm long was made. Initial daily were evaluable up to 60 minutes post treatment. Two of morphine dose was 1/100 of the daily oral morphine- PE 1.F316 5 patients demonstrated clinically significant pain relief equivalent dose. Bupivacaine or ropivacaine was used, in the majority of episodes by 5 minutes with one but now only bupivacaine was used at 5 mg/day The cancer pain syndromes associated with additional responder by 10 minutes. Toxicity was starting dose. Drugs were diluted in normal saline, with refractory pain required high dose opioid use or uncommon and usually mild. We are developing a a total volume of 12 ml and an infusion speed of 0.5 multiple drug therapy predictive model for the optimal number of ml/h. breakthrough episodes to measure per patient. Results: Mean starting morphine dose was 4.7 mg and Matsuda Y1, Tsuneto S2, Goya S2, Tanimukai H3, Ono Y4, Conclusions: Based on the results of this feasibility final was 11.6 mg. Mean starting bupivacaine dose was Matsuda R1 study a larger randomized clinical trial using this 12.9 mg and final was 28.9 mg. Mean duration of 1Osaka University Graduate School of Medicine, research model would not be successful. However, administration was 77.1 days. Fourteen patients whose Department of Anesthesiology & Intensive Care extensive information obtained from small numbers of pain was controlled to <4 on a 0-10 scale were Medicine, Osaka, Japan, 2Osaka University Graduate sessions carefully studied patients gives preliminary evidence to considered to have achieved good control. In 2 of the 5 School of Medicine, Department of Palliative Medicine, suggest that sublingual methadone is rapidly absorbed, patients examined, histopathological changes such as Osaka, Japan, 3Osaka University Graduate School of

(Friday) effective, safe, and well tolerated. gliosis were observed in the spinal cord. Medicine, Department of Psychiatry, Osaka, Japan, Funding: CIHR, Alberta Cancer Board. Discussion and conclusion: Continuous 4Osaka University Hospital, Department of Nursing,

Poster inthrathecal infusion with morphine and local Osaka, Japan anesthetics appears useful and safe for intractable PE 1.F313 cancer pain. However, this method carries a risk of Aim: It may be difficult to assess whether to give a possible damage to the spinal cord. Given the small higher dose of opioid or yet another adjuvant analgesic, Safety and efficacy of hydromorphone OROS® in sample size in this study, further examination is when titrating adequate analgesic doses in the patients the treatment of moderate-severe pain in opioid needed. with refractory cancer pain. The aim of this study was naïve cancer patients. Preliminary results of an to clarify the characteristics of the patient groups with open prospective phase II study cancer pain which required high dose opioid use (HDO) or very multiple drug therapy (vMDT) in order Massa E1, Astara G1, Dessì M1, Spiga C1, Tanca F M1, to resolve this problem. Madeddu C1, Urpis M1, Lepori S1, Orgiano L1, Pala L1, Loi Methods: We retrospectively studied the medical C1, Mantovani G1 records of all hospitalized cancer patients supported by 1University of Cagliari, Department of Medical palliative care teams for over two weeks between April Oncology, Cagliari, Italy 2004 and August 2008. Information was collected Hydromorphone (H) hydrochloride is a μ-opioid regarding age, sex, tumor type, cancer pain syndrome, agonist: the novel, once-daily, extended-release (ER) concomitantly administered analgesics and adjuvant hydromorphone formulation utilizes the OROS® Push analgesics, and maximum opioid dosage. We assessed Pull TM osmotic active technology designed to release the pain syndromes associated with patients required hydromorphone at a controlled rate for up to 24 hours. HDO (>599mg/day of oral morphine equivalent) or The aims of this open prospective phase II study were to vMDT (more than 5 drugs), respectively. The date was verify the efficacy, safety and impact on quality of life statistically analyzed with logistic regression analysis. (QoL) of the treatment with H OROS® in moderate to Results: 246 patients were identified. The maximum severe pain of opioid naïve cancer patients. Four visits opioid dosage was 120mg/day (median, range 0- (V) were planned for the the study: V1 before treatment 1440mg/day), and 21 patients (8.5%) were given HDO. with H OROS®; V2 24 h after treatment; V3 and V4 after 3.0±1.2 analgesics and adjuvant analgesics were 7 and 14 days, respectively. Pain intensity (acute and administered concomitantly (mean ± SD), and 29

108 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) patients (11.8%) required vMDT. Bone pain (OR: 3.28, rate decreased from 28.0±4.9 / min to 22.2±4.2); after Treatment: 77% of the Patients treated with fentanil CI: 1.06-10.09) was independently associated with 120 min to 21.0±3.1 /min, (P = 0.001) breaths/min. citrate oral transmucosal. HDO, and neuropathic pains involving the peripheral There was no significant increase in tcpaCO2 30 and Conclusions: In literature some studies show a nervous system (odds ratio[OR]: 7.46, 95% confidence 120 min after opioid application (37.4±3.1 mmHg vs. prevalence (63, 8 %) of BTP similar to that found out in intervals[CI]: 2.66-20.91) and neuropathic pains 36.6±3.5 mmHg after 30 min (p=0.382) and 36.4±3.0 our study, also some data on clinical and temporal involving the central nervous system (OR: 4.77, CI: mmHg after 120 min (p=0.345)). SaO2 did not change characteristics of this phenomenon, with some little 1.15-19.81) were associated with vMDT, respectively. significantly (p=0.096). exception: no case of so called BTP “end of dose”, a new Conclusions: These results might indicate that Conclusions: In conclusion we found that there is no kind of BTP was evaluated that we have defined adjuvant analgesics are likely needed to combine higher risk for respiratory depression and no change in “idiopathic-incident pain or mixed pain”. Evidenced a aggressively in the presence of neuropathic pain and paCO2-levels in patients titrated up to an adequate pain percentage 53.3% of mixed pain physiopatological. opioid dosages should be increased in the presence of control with hydromorphone injectable solution. The It is confirmed that it is necessary and advisable to use bone pain when treating intractable cancer pain. first hydromorphone application, however, resulted in fentanil citrate oral transmucosal, i.e. a easy-to-use and a significant decrease in the intensity of pain and in indicated drug for this kind of pain. respiratory rate. PE 1.F317 PE 1.F321 Bowel function during a pain therapy with a PE 1.F319 combination of oxycodone / naloxone Topical Pain Medications (TPM) for patients prolonged-release tablets in geriatric patients Safety of hydromorphone in the management of with advanced cancer intractable cancer pain in palliative care Clemens K E1, Quednau I1, Klaschik E1 patients with severe renal failure Daeninck P J1, Wadhwa D1, Gingerich J1, Lemanski L2, 1Centre for Palliative Medicine, University of Bonn, Krahn M1 Malteser Hospital Bonn, Department of Science and Clemens K E1, Quednau I1, Klaschik E1 1University of Manitoba, Dept of Internal Medicine, Reserach, Bonn, Germany 1Centre for Palliative Medicine, University of Bonn, Winnipeg, Canada, 2St. Boniface General Hospital, Malteser Hospital Bonn, Department of Science and Pharmacy, Winnipeg, Canada Aims: Physical pain is one of the most frequently Research, Bonn, Germany experienced symptoms of patients. A therapy with Introduction: Patients (pts) with advanced cancer WHO-step III opioids is often necessary already at the Aims: Patients with advanced cancer frequently may suffer from a variety of pain syndromes (PS), start of pain therapy in order to achieve sufficient experience intractable pain and suffer from renal including those caused directly by the disease or by symptom control. Constipation is one of the most failure. In cancer pain management the renal function therapeutic interventions (surgery, radiation, or frequent and persistent side effects of opioid therapy, influencing the safety of opioid therapy is of special pharmacotherapy). These pts often have more than one and it is feared by many patients as much as the interest. Accumulation of active metabolites of opioids type of PS (neuropathic pain is often the main symptom of pain. The aim of the study was to evaluate explains cases of opioid toxicity in patients with complaint), require several medications to obtain whether geriatric patients with severe to most severe decreased renal function. We reviewed the experience benefit, and as such, are at increased risk for drug pain will benefit from the treatment with and safety of the use of Hydromorphone (HM) in induced adverse effects. The use of medications applied oxycodone/naloxone prolonged release tablets (OXN), palliative care patients with a severe renal impairment. topically to treat specific PS may have several beneficial particularly with regard to constipation and global Methods: A retrospective study of 443 patients effects, such as concentrated treatment to a specific area patient satisfaction. admitted to our palliative care unit in 2006 to 2007 was or site, avoidance of the hepatic first-pass effect, no Methods: We evaluated in this exploratory, non- performed. Patients with severe renal failure (creatinine possibility of drug interactions, and little or no systemic randomized, open-label, monocenter study the bowel serum concentration ≥5.0 mg/dl) and intractable side effects. function in geriatric patients treated with OXN. During cancer pain treated with hydromorphone during their Methods: A retrospective review was conducted at our the treatment phase patients were titrated up to an hospital stay were included. Statistics: mean±SD, institution to identify all pts treated with TPM for relief adequate pain control with a maximum total daily dose significance p < 0.05. of PS, either due to adverse effects or poor effect of of 40/20 mg OXN. The Bristol Stool Form Scale (BSFS) Results: Severe renal impairment was documented in other drugs or pts preference, between 06/06 and (Type 1-7) and Bowel Function Index (BFI) (0-100) were 49 (11.1%) patients, (age 68.5±13.1, 26 (53.1%) men). 10/08. used to asses the consistency and frequency of their In all patients, the reason for admission was inadequate Results: A total of 30 pts (13 males) used TPM; we have bowel movements throughout the study. Global control of pain, and in 85 patients additional complete data on 26 pts thus far. Nineteen pts stated patients satisfaction was assessed with Patient Global manifestation of opioid toxicity. All patients had cancer they found improvement in their PS (measured by Impression of Change Scale (PGIC) (1-7). Statistics: in an advanced stage. Mean Karnofsky index was 40 VAS), 5 had no benefit, and pain worsened in 2 pts. mean±SD, significance p < 0.05. (range 20-50). Mean serum creatinine concentration Several cancers were represented, including Results: 12 patients were included; 5 of the patients was 8.2±2.50 mg/dl, and blood urea nitrogen colorectal(8), breast(6), genitourinary(6), (41.7%) were male. Mean age was 76.0±12.0 y. Length 181.0.0±142.3 mg/dl. Of the 90 patients 5 were opioid- hematologic(4), as well as mix of others(6). A variety of of stay was 18.8±4.7 days. At admission all patients naïve. Mean daily dose of HM at discharge was PS were treated, including neuropathic pain due to reported to suffer from opioid-induced constipation. 49.0±40.0 mg (368.0±300.0 mg morphine equivalence - disease (14), neuropathies due to previous cancer Daily mean dose of OXN was 28.3±9.4 mg. BFI considering an equianalgesic conversion ratio of M:HM therapy (14), and pain unrelated to the cancer (2). The improved significantly in all patients (75.0±24.3 vs. = 7,5:1). Nausea, myoclonus and sedation were most common medications used were ketamine and 42.1±21.3) (p=0.002); BSFS changed in mean from type significantly reduced by use of HM. Analgesic response lidocaine (n=30), in combination with gabapentin, 1.8±0.6 to 4.4±0.7 (p=0.002). PGIC in mean at discharge improved clearly. ketoprofen and baclofen, all of which target different was 1.4±0.5. Conclusions: Symptoms of opioid toxicity can be receptors involved in PS. These were delivered through Conclusions: All study results showed a clinically relieved by opioid switching to HM in patients with either PLO or Lipoderm gel formulations. No patient relevant improvement in bowel function under severe renal failure. Prospective studies with thorough discontinued the medications due to adverse effects. treatment with OXN. PGIC showed increased documentation of the symptoms of opioid toxicity in Conclusions: Topical administration of pain satisfaction. patients with renal failure are needed to confirm our medications is beneficial against PS, especially results. neuropathic pain, and is well tolerated by patients with advanced cancer. PE 1.F318 PE 1.F320 Effect of hydromorphone injectable solution on PE 1.F322 ventilation during the titration phase for cancer Breakthrough Pain (BTP): A study in advanced pain therapy and far advanced onocological patients assisted Experience of methadone therapy in 35 sessions at home by ANT Italia Foundation consecutive chronic malignant pain patients

Clemens K E1, Quednau I1, Klaschik E1 (Friday) 1Centre for Palliative Medicine, University of Bonn, Bruni M1, Sapio A1, Casadio M2, Pannuti R2, Pannuti F2 Destro M1, Ottolini L1 1 1

Malteser Hospital Bonn, Department of Science and Fondazione ANT Italia ONLUS, Taranto, Italy, Servizio Cure Palliative, Trento, Italy Poster Research, Bonn, Germany 2Fondazione ANT Italia ONLUS, Bologna, Italy Introduction: Methadone is an opioid agonist Aims: Hydromorphone (HM) is a widely used semi- Objective: Evaluation of Breakthrough Pain (BTP) in considered a second choice drug in the management of synthetic opioid that has become an increasingly oncological Patients assisted at home. cancer pain when compared to the use of morphine. Its important option in the treatment of severe chronic Patients and methods: From January 1st 2007 to plasmic half-life, the possible pharmaceutical cancer pain. We investigated the use of April 30th 2008 a total of 72 advanced and far advanced interactions and the complexity of its receptor action hydromorphone and its effect on ventilation during oncological Patients have been assisted (life expectancy: make this drug particularly effective when treating the titration phase in patients with cancer pain. range from 1 to 4 months). cancer pain but managing this drug can also be complex, Methods: 32 patients admitted to our PCU were Eligibility criteria: mainly due to the risk of accumulation in the body. included in this prospective, non-randomised trial. At - Life expectancy higher than 1 month Objective: The objective of the study was to describe admission, all patients suffered from sever cancer pain. - Presence of basic chronic pain in therapy with opioids the experience of methadone use in 35 consecutive All patients were titrated up to an adequate pain control - Basic pain controlled in the last 3 days (administration chronic pain patients managed in a single palliative with hydromorphone injectable solution of a pain flow sheet NRS) for evaluation of BTP care center. (subcutaneous application). The initial opioid dose was - Undamaged consciousness state. Design, setting, patients: A retrospective study has defined according to pain intensity as well as with Results: Out of 72 Patients, 47 were evaluable. been carried out concerning patients suffering from regard to patients´ performance status and with Out of 47 Patients observed, 17 (36.2%) presented basic cancer pain treated with methadone, while receiving consideration whether patients were opioid-naïve or chronic pain. care in a Hospice or directly at home by our palliative pre-treated with strong opioids. Titration steps were: In 30 Patients (63.8%) with basic pain presented also care service, starting from January 2007. Outcome 0.5-1-1.5 2-2.5-3 mg etc.). TcpaCO2, SaO2 and PF were BTP events. Of these it has been possible to evaluate the Measure. Effects on pain relief and function, measured transcutaneously by means of a SenTec clinical characteristics and the therapeutic approach. conversion ratio from other opioids, side effects, and Digital Monitor (SenTec AG, Switzerland). Statistics: Our results: 53.3% mixed pain; 85% BTP due to cancer; disposition were reviewed. mean±SD; Wilcoxon Test, significance p < 0.05. 33.3% BTP due to the limbs, 26.1% to rachis; less than 5 Conclusion: From our experience, methadone is an Results: As early as 30 min after the first episodes/die of BTP in 88.3% (median daily of 2.33; effective alternative to conventional opioids for chronic hydromorphone application a significant improvement duration of BTP: less than 30 minutes in 76.6% of cases; malignant pain management when used by was shown in the intensity of pain, mean respiratory intensity: in 90% of cases NRS 7-10). experienced clinicians.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 109 Poster sessions (Friday)

PE 1.F323 post dosing showing BTP was effectively relieved. INFS PE 1.F328 at all doses was well tolerated. INFS constitutes a new Inconsistent opioid prescribing guidelines treatment option in BTP. Pain treatment with sustained-release (SR) hydromorphone in patients with prostate Taubert M1, Regnard C2, Christie J2, Finlay I3 tumour 1University Hospital of Wales, Palliative Medicine, PE 1.F325 Cardiff, United Kingdom, 2St. Oswald’s Hospice, Junker U1 Palliative Medicine, Newcastle upon Tyne, United A joint approach to interventional pain 1Sana Clinic Remscheid, Department of Special Pain Kingdom, 3House of Lords, London, United Kingdom management for cancer pain Therapy and Palliative Care, Remscheid, Germany

Background: One of palliative medicine’s key Hugel H1, Sharma M L2 Aim: To evaluate efficacy, safety and controllability of messages over the past 30 years has been to encourage 1University Hospital Aintree, Aintree Specialist Palliative pain therapy with SR hydromorphone in tumour safe and effective opioid prescribing. This has been Care Services, Liverpool, United Kingdom, 2The Walton patients with a focus on patients with prostate tumours. achieved by education, explanation and reassurance of Centre for Neurology and Neurosurgery, Chronic Pain Methods: Multi centre non interventional study with both patients and prescribers and by using tools such as Services, Liverpool, United Kingdom 2041 patients (∅ age 66.1 ± 11.2 years) with severe, the WHO analgesic pain ladder. However, current progressive pain. Analysis of a subgroup with prostate advice on guidance of starting and titrating opioids can My colleague Manohar Sharma and I would be keen to cancer. Patients received primarily twice daily SR appear to be inconsistent when taken at face value. offer an interventional pain workshop at the EAPC hydromorphone in pain adapted doses after an initial Aim: To evaluate the differences in current prescribing conference. examination. Follow-up was to be performed after day 3 guidance for opioids and to provide consistent We run a joint cancer pain clinic between the pain and 7 with a final examination after about 21 days. Pain guidance about opioid prescribing with, as a minimum service at the Walton Centre for Neurology and intensity was to be measured using a numeric rating requirement, advice on starting doses, median doses Neurosurgery and Aintree Specialist Palliative Care scale (NRS 0=no pain to 10=strongest conceivable pain). and on titration. Services in Liverpool U.K. A wide range of procedures Quality of life was to be specified by the patient and to Methods: We review fourteen commonly sought including neuroaxial infusions, IDDS, Cordotomy, be documented in a self-evaluation questionnaire based sources on opioid prescribing for physicians and intrathecal neurolysis and coeliax plexus blockade are on the parameters of general activity, mood, walking highlight discrepancies and differences and present the offered through this service. We are a tertiary referral ability, work, social contacts, sleep and vitality (total results. centre for these procedures and see patients from score: 0=no impairment to 70=most severe Results: within the U.K. We practice and are particularly keen to impairment). At the end of the observational study - Some sources make little or no mention of starting advocate a joint approach between pain and palliative physicians assessed efficacy, tolerability and doses, titration advice or advice on upper limits. care specialists in assessing these patients. compliance. - Starting doses for opioid-naïve patients vary from 6 - We would like to run a case based workshop, Results: Average pain intensity in patients with 60mg per 24 hours. approximately 60min long with maybe up to forty prostate cancer (N=287) was reduced significantly - Titration advice varies from 30% every 2-3 days to a participants. Key procedures such as percutaneous compared to start of therapy with SR hydromorphone 50% increases four hours after the previous dose. cordotomy and neuraxial infusions would be covered. from NRS 6.2±1.6 to 2.7±1.4. The individually titrated - Upper limits for oral morphine vary from We have recently run such a workshop for a national dose of hydromorphone increased during the 300mg/24hours, through 3000mg/24hours, to training day of palliative care trainees (Doyle Club treatment phase of about 3 weeks from ∅13.4 to 21.0 statements that there was no maximum dose. study day) which evaluated highly. mg/d. With hydromorphone the rate of patients - It is unusual to find median doses mentioned. suffering from typical opioid symptoms was low. Conclusion: We suggest that a similar review of advice Quality of life parameters improved significantly during on commencing and maintaining opioid medicines in PE 1.F326 therapy. Both efficacy and tolerability as well as patient other countries may yield similar discrepancies and compliance were rated as ?very good” and “good” by that solid, international consensus is currently lacking, Withdrawn the doctors in over 92% of cases. but is likely to be addressed by the EAPC in the near Conclusion: SR hydromorphone is safe, effective and future. Until then, we suggest a strategy wherein well controllably in patients with progressive tumour guidelines should provide consistent guidance about PE 1.F327 pain - especially determined in patients with prostate opioid prescribing with, as a minimum requirement, cancer very often associated with painful bone advice on starting doses, median doses and on titration. Use of invasive analgesic techniques for pain metastases. Quality of life increased significantly. We present a format to this effect in the form of a table. control in an acute palliative care unit: Acknowledgement: Supported by grants from Preliminary results Mundipharma GmbH, Germany.

PE 1.F324 Garzón C1, Espinosa J2, Mayoral V3, Serrano G1, Tuca A1, Badosa G1, González-Barboteo J1, Llorens S1, Porta-Sales J1 PE 1.F329 Efficacy of titrated doses of intranasal fentanyl 1Institut Català d’Oncologia, Palliative Care Unit, spray (INFS) for breakthrough cancer pain: L’’Hospitalet - Barcelona, Spain, 2Institut Català The use of cannabinoids (CBs) for the treatment Results of a double-blind, placebo-controlled, d’Oncologia, WHO Collaborating Centre for Public of chemotherapy-induced peripheral crossover confirmatory trial Health Palliative Care Programmes, Barcelona, Spain, neuropathy (CIPN): A retrospective review 3Hospital Universitario de Bellvitge, Anesthesiology and Kress H G1, Oronska A2, Kaasa S3, Colberg T4, Nolte T5 Pain Clinic Unit, Barcelona, Spain Gingerich J R1, Wadhwa D1, Lemanski L2, Krahn M1, 1Medical University / AKH Wien, Wien, Austria, Daeninck P J1 2Hospicjum Domowe, Wroclaw, Poland, 3St Olavs Introduction: Around 80% of patients suffering from 1University of Manitoba, Internal Medicine, Winnipeg, Hospital, Trondheim, Norway, 4Nycomed, Roskilde, cancer pain (CP) obtain good analgesia if they follow Canada, 2St. Boniface General Hospital, Winnipeg, Denmark, 5Schmerz- und Palliativzentrum Wiesbaden, the WHO analgesic ladder. The rest of the patients with Canada Wiesbaden, Germany CP may require invasive analgesic techniques (IAT), either due to secondary effects or to the poor effect Background: CIPN is a common toxicity associated Aim: To confirm the efficacy of intranasal fentanyl opioids. Our unit has recently started a “joint-venture” with the use of chemotherapy (CT) agents such as spray (INFS), for the treatment of breakthrough pain with the Pain Clinic to comprehensively care patients platinums, taxanes and vinca alkaloids. Patients (pts) (BTP) in patients with cancer, and to establish its long- with complex CP syndromes, including their diagnosis may suffer from pain that adversely affects their quality term safety. and treatment. These preliminary results reflect a of life, regardless of their disease trajectory. Preclinical Methods: This was a randomised, double-blind, cooperative work carried out on CP relief. Period Feb- research has shown CBs to be effective in preventing sessions placebo-controlled, crossover, multicentre trial using May 08. CIPN. CBs can be beneficial for cancer pain, although INFS titrated to doses of 50, 100, and 200 ?g to treat Aim: To describe those patients who required an IAT their specific benefit in pts with CIPN remains

(Friday) episodes of BTP in cancer patients receiving chronic and the overall analgesic results obtained. unknown. opioid treatment and experiencing ≥3 BTP Material & methodology: Patients who required an Methods: A retrospective chart review was conducted ≤

Poster episodes/week and 4 /day. Patients were titrated to a IAT (spinal infusion, nervous blockage and anesthetic to identify all pts with CIPN treated with CBs at our successful INFS dose which they then received in a infiltration). Demographic variables, pain syndromes institution between 7/07-10/08. randomised, double blinded sequence, for 6 of 8 BTP (PS), type of IAT, complications derived from the Results: Eight pts were identified; 6 were male. Six pts episodes (≤4 per day), and placebo for 1 BTP episode technique, analgesic efficacy and subjective perception had received platinum-based CT. Four had colon each of episodes 1-4 and 5-8, respectively. The primary of the patient were registered. cancer. Four pts had metastatic disease. The median efficacy endpoint was pain intensity difference at 10 Results: 13 patients were included. Mean age was 63.7 time to CIPN treatment (post-chemotherapy) was 4 min (PID10) post dosing. The intention-to-treat (ITT) years and 76.9% were men. A total of 21 IAT were months (0-84 months). All pts had 2+ neuropathy population was composed of all randomised patients performed. Five patients required more than one based on the NCI-CTC for Adverse Events. Pain who received at least one dose of double-blinded study technique to control their pain. The 3 most frequent improved in 7/8 pts with CB treatment. In those who medication. tumors were lung, prostate and rectum. The median responded, the improvement was as much as 7 points Results: In 120 enrolled patients, 113 were randomised PPS was 60. The medium daily dose of oral morphine on an 11 point VAS. Two pts who transiently stopped and 111 constituted the ITT set, with n = 17, 51, 44 equivalent required before the IAT was 213.5mg and ≥ 1 treatment noted increased CIPN symptoms. Three pts titrated to 50, 100, 200μg, respectively. The LS mean opioids rotations had been done to more than half of eventually stopped treatment (1 due to side effects). PID10, was significantly higher for treatment with INFS the patients. The most frequent PS was pelvis pain Conclusions: Treatment with CBs appears to benefit vs placebo (1.26, p < 0.001, ITT), as was LS mean INFS (23.1%), the most used IAT was the spinal infusion some pts with CIPN. Further research is needed to sum of pain intensity difference up to 60 min (SPID0 - (28.6%). The analgesic improvement was fast and had explore the optimal use of CBs in pts with CIPN. 60) score (1.7, p < 0.001), and LS mean general statistical signification. Half of the patients perceived a impression (GI) score at 60 min (0.93, p < 0.001). The significant CP improvement. AE from the IAT were not mean overall responder rate with INFS was more than observed. Most complications were of technical origin double that of placebo (51% vs 21%, respectively). Few (catheter migration, disconnection or dysfunction). adverse events (AEs) were recorded: 4 patients (3.6%) Conclusions: Pelvic pain was the PS most frequently had nausea, 2 (1.8%) had vertigo, and 2 (1.8%) requiring an IAT and the most frequently used experienced progression of underlying malignancy. technique was the spinal infusion of analgesics. The use Conclusions: In opioid-tolerant cancer patients, INFS of the IAT offered a very significant and fast titrated to doses of 50, 100 and 200 μg demonstrated improvement of CP. Patients referred having good significant and fast onset of pain relief at 10 minutes control of their symptoms.

110 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday)

PE 1.F330 PE 1.F332 PE 1.F334

Opioid use in palliative home care: Results from Feasibility study of brief patient based Pain control: Nurses and patients view an eight year study educational DVD for cancer pain Demskyte J1, Bertasiene N M2, Sederskiene V3 Escalada H1, Lama M1, Ochoa A B1, Gorritxo R1 Bennett M I1, Capewell C1, Closs S J2 1Kaunas University of Medicine, Nursing and Care 1Hospital San Juan de Dios, Unidad de Cuidados 1Lancaster University, International Observatory on End Department, Kaunas, Lithuania, 2Gargzdai Hospital, Paliativos, Pamplona, Spain of Life Care, Lancaster, United Kingdom, 2University of Gargzdai, Lithuania, 3Kaunas University of Medicine, Leeds, Leeds, United Kingdom Kaunas, Lithuania Objective: To determine and analyze opioid use and its cost in the region of Navarre and what has been its Aim: To assess feasibility of randomised, controlled The purpose of this research: To examine the evolution over the past nine years. phase III clinical trial evaluating brief DVD-based properties of the patient‘s pain control in the district Methods: A retrospective observational study of all educational intervention for cancer pain in palliative hospital. prescriptions made in the health system subgroup care patients. Recent meta-analysis has shown benefit Research was done in in the hospital of Gargzdai city, N02A (narcotic painkillers) in the province of Navarra of education when given as intensive nurse coaching Klaipeda municipality, 2008 Spring. during the period 2000-2008. The data are obtained but brief interventions have not been assessed. The method of research: Anonymous, questionnaire through the process of billing for prescripted drugs of Methods: Single centre longitudinal observational inquest. Two questionnaires were intended: one was Navarra. These data are treated with a computer design. Patients with cancer pain living at home and assigned for the patients of pain (30 patients program that allows analysis of aggregate consumption their carers were recruited from hospices and oncology participated), other for general practices nurses (30 by active ingredients. outpatients. Participating dyads were shown DVD at nurses participated in the research), trying to ascertain It has been used the number of Defined Daily Dose baseline and given a DVD and leaflet to take home. the properties of the patient‘s pain control in the (DDD) already consumed. After that, it has been Dyads were shown DVD again at 7 days and 30 days hospital. After explaining the purpose of research, estimated the number of defined daily doses per 1000 later. Educational DVD was 6 minutes in duration and relevance, substantiality, questionnaires were inhabitants daily ( DDD/1000/día=DHD). We analyzed addressed pain assessment, compliance aids and distributed. Questionnaires were created by the authors. the 4 major opioides. common fears about painkillers. Patient and carer Results: 67 percent of nurses thought, that the pain Results: Opioid consumption in Navarra has been outcomes assessed before the intervention and at each most rightly can be described by the pain patient multiplied by 5.17 between 2000 and 2007. It has gone follow up included pain intensity, pain interference, himself, 40 percent of patients thought that nurses can from 0,292 to 1,511 DHD. The active substance most knowledge and attitudes towards pain management evaluate pain better then patients themselves (p<0,05). commonly consumed in 2007 was the transdermal and medications, and psychological and self-efficacy Pain patients were not motivated to suffer pain for fentanyl (1,039 DHD) followed by morphine (0,125 measures. Outcome measures were analysed using longer time. The patients suffered pain for longer time, DHD). With regard to developments in these 8 years, linear mixed effects modelling. Acceptability of DVD because they were afraid to dose up of drugs (60 the use of transdermal fentanyl has increased by 7 and format, satisfaction with information, recruitment and percent of nurses and 40 percent of patients). 67 two drugs have strongly emerged: oxycodone since attrition rates were also evaluated. percent of nurses and 70 percent of patients thought, 2004 and buprenorphine transdermal since 2002, Results: 15 patients and 10 carers were recruited; 3 that after treatment the pain will disappear. Patients which constituted in 2007 up to 23% of total strong patients withdrew before second visit, and 2 withdrew suffered from chronic pain and they believed that pain opioid used. before final visit due to deteriorating health. Patient will be treated well. Analysis of assessment of pain The use of parenteral morphine has increased threefold outcomes: mean worst pain intensity fell from 6.2 to intensity, use of pain killers and acceptability and since 2005. 5.3 at 30 days (p=0.06); mean knowledge and attitudes effectiveness of pain method differ statistically. Nurses The total expenditure of opioids in euros in 2006 scores improved from 64 to 76 (p=0.014). Patients and (73 percent) chose injections as the best method of amounted to 1.559.456 euros We will present dates of carers found DVD format acceptable and content pain control, but for most of patients (90 percent) it is 2008 in the congress. helpful. the most unacceptable. Conclusions: Opioid use in the extrahospital Conclusion: Findings suggest that brief educational Conclusion: Patients are not independent in environment of Navarra has multiplied sevenfold in interventions are practical and potentially effective assessment of pain intensity and pain control. the past eight years. within 30 day follow up period. Multicentre The emergence of new drugs (transdermal randomised controlled clinical is now needed (based buprenorphine and oxycodone) has contributed on sample size calculation from this data) to evaluate PE 1.F335 significantly to this increase. this intervention further in palliative care population. Despite the overall increase, there has been no increase Funding: NAPP Educational Foundation UK. Transdermal fentanyl in cancer pain patients in the use of morphine, so their use should be strengthened. Lakicevic J1, Lakic D1, Sorat M1 DHD parenteral morphine has been multiplied by three PE 1.F333 1Clinic Center of Montenegro, Clinic of Oncology, over the last three years, coinciding with the creation of Podgorica, Montenegro the Home Care Team. Symptom clusters in advanced cancer: Role of systemic inflammation Certain number of cancer patients (pts) unnecessary suffer due to inadequate pain control. We evaluate PE 1.F331 Laird B J A1, Scott A C1, Murray G D1, Colvin L A1, Fallon M efficiency and tolerability of transdermal fentanyl (TF), T1, Fearon K C H1 which is recently available in our country, for treatment Significant pain relief with intravenous 1University of Edinburgh, Edinburgh, United Kingdom of patients with severe cancer pain. ibandronate in symptomatic bone metastases From January 2007 until January 2008, 165 cancer pts Aims: Cancer symptoms rarely exist in isolation and in were treated with TF. Out of that were 89 (54%) men Gabrovska M1, Dedobbeleer I2, Geurs F J C2, Van Mulders K2 recent years the concept of symptom clusters has been and 76 (46%) women. Previously, the most of them had 1Regionaal Ziekenhuis Sint Maria, Palliative Care Unit, increasingly discussed in the literature. Systemic therapy with NSAID or mild opioides with/without Halle, Belgium, 2Regionaal Ziekenhuis Sint Maria, inflammation has been suggested as a possible coanalgetics. All types of cancer pain (nociceptive, Palliative Support Team, Halle, Belgium underlying mechanism of cancer symptom clusters. neuropathic, and mixed) were observed. In pts with This study examines whether pain, depression and breakthrough pain additional parenteral analgetics Aim: Pain in bone metastases is usually diffuse and a fatigue exist as a symptom cluster. The relationship of (tramadol or morphine) were applied. selective treatment is therefore hard to find. Recent C-reactive protein (CRP- as a measure of pro- Distribution due to primary tumor site was: 40/165 publications 1,2,3 drew attention to the analgesic effect inflammatory cytokine activity) to pain, depression and (24%) breast cancer, 34/165 (21%) lung cancer, of loading dose of ibandronate (BONDRONAT). fatigue is examined and a possible biological malignant GIT tumors 22/165 (13%), pancreatic cancer Methods: Patients with painful bone metastases explanation of these cancer symptoms is explored. 13/165 (8%), head and neck cancer 13/165 (8%), other sessions requiring analgesics, were treated with loading dose Methods: Analysis was undertaken of two large cancer tumor types 43/165 (26%). TF was introduced in pts bondronat (4mg/day on three subsequent days). VAS trials (n=718). Symptoms were assessed using the with pain intensity 7 of VAS. For most of the pts initial (Friday) score and analgesic consumption were evaluated. European Organisation for Research and Treatment of dose was 25mcg//h. During course of disease 136 (82,

24 patients were treated from 1/2005 to 10/2008. All Cancer (EORTC) Quality of Life Questionnaire C-30. 4%) patients were treated with doses 50 to 100mcg/h. Poster patients had diffuse bone metastases and severe pain Measurement of plasma CRP was performed. Doses above 100mcg/h were applied in 29 (17,6 %) (VAS > 5);initially even resistant to strong opioids. Multivariate analysis was undertaken and Pearson patients. Out of those, one patient was treated with Median age 76 (range 50-86). Tumor types: prostate 5, correlation coefficients were calculated between all 200mcg/h, which was maximal applied dose. In the lymphoma 2,myeloma 5, breast 5, lung 6, colon 2. VAS pairs of variables. A series of regression analyses were whole group of pts serious adverse effects have not evaluation was done prior to bisphosphonate run relating pain, depression, fatigue and CRP. been reported. administration and on day 4 (24 hours after the last Results: Pain, fatigue and emotional functioning Our patients were treated with TF too late (pain administration). (mood/depression) were strongly related (correlation intensity 7 of VAS). Introduction of TF could be earlier Results: Median VAS dropped from 8/10 to 3/10 after significant at the 0.01 level - 2 tailed). CRP was related in course disease, due to its efficiency and good administration of BONDRONATE. This effect was seen to pain and fatigue (to levels of statistical significance, tolerability. across tumor types, and also in sites of prior irradiation. p<0.05). CRP was positively correlated with emotional There were no side effects noted, nor subsequent renal functioning but this did not reach levels of statistical function deterioration significance. PE 1.F336 Conclusion: In symptomatic bone metastases with Conclusions: In this dataset, there are strong significant pain, refractory to standard analgesics and associations between pain, fatigue and depression. This Minimally invasive procedures in cancer pain radiotherapy, loading dose ibandronate represents a apparent symptom cluster has a statistical relationship treatment simple and non toxic treatment to obtain significant with plasma CRP. While we cannot conclude a definite pain relief in a very short time. causal relationship between systemic inflammation Goraj E1, Jarosz J1, Stypula-Ciuba B1, Tomaszewicz E1 References: (using CRP as a biomarker) and this cluster of 1M. Sklodowska-Curie Memorial Cancer Centre and 1. Mancini I, Body JJ; JCO 2004; 22; 3587- 92 symptoms, these results give a strong indication that Institute of Oncology in Warsaw, Department of 2. Heidenreich Eur J Cancer 2003; S270-273 further elaboration of this concept could be of great Palliative Medicine, Warsaw, Poland 3. Ohlman Supportive Care Cancer 2002,11; 396 clinical interest as well as moving the research agenda forward. Introduction: It has been argued the employment and executing time of minimally invasive procedures (MIP) in strategy of cancer pain treatment. Many place MIP as the IV step of analgesic ladder, others use blocks

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 111 Poster sessions (Friday)

from the beginning of therapy. We treat MIP as with a follow-up check out after one week. progressive course of disease - allows for the adjuvant therapy and use them according to diagnose 24-28/01/2005 opportunity to build up wounded confidence and on each step of analgesic ladder. Severity of pain (basal BP, episodic EP, nºepisod/24h experience a deep feeling of security. Aim: Assessment of efficacy of MIP in patients, treated NEP) by a verbal numeric scale VNS (0-10), registered Target groups: in our Department (D) during first 3 months of 2008. day 1-7. - Recovery for families with children after intense Material and method: 50 (50% of all admitted to D) PCT: outpatient team OUT, hospital support team HST, treatments patients treated by MIP. All reported pain in NRS > 4. unit team UNT, home support team HMT. - Families with children with a chronic or progressive Procedures performed: KPS subgroups:≤30, 40-60, ≥70. course of disease Neurolytic blocks of celiac plexus - 9 patients, superior Wilcoxon test, Xi-squared. SPSS 14.0. - Families where one parent is critically ill hypogastric - 8, ganglion impair -5; Thermolesions: Scientific Committee PC Service. Catalan Institute of - Children and teenagers after traumatic experiences or suprascapular - 2, intercostal - 1, dorsal roots or facet Oncology. losses. joints: lumbar - 7, thoracic - 1, Epidural - continuous Ethics Committee CEIC HU Bellvitge. block- 5, sterods application - 9. Results: Results were evaluated as reduction of severity of pain - 157 patients PE 1.F340 in NRS after 24 hours and 10 days: very good and good - Age (mean) 70,55 - reduction more than 3 points, satisfied - 1-2, not - PCT 111 (75% total) „Sterntalerhof“ - A rather different hospice for satisfied - 0. - PCT: OUT 30 p(19%), HST 30 p(19%), UNT 37 p(24%), children Results: Very good and good results were obtained in HMT 60 p(38%). 25 patients (50%), satisfied in 13 (26.0%), not satisfied Herincs G1 12 (24%). In v. good and good results group, the dose of PCT. Pain control 1Caritas Eisenstadt, Vienna, Austria opioids was not changed, or reduced. In satisfied - the day 1 day 1 P<0.05 average increase of dose was 20 -32%. Not satisfied OUT EP 7 6 0,239 The „Sterntalerhof“ on its self-image (self concept) acts group required complex revision of treatment. No NEP 3 2 0,251 literally as an hospice for families, who carry heavy serious complication were observed. burden by looking after very sick or handicaped Conclusion: Nerves blocks are valuable methods of KPS. Pain control children. Here they will have a break, get the chance to cancer pain treatment. High range of positive results day 1 day 7 P<0.05 breathe deeply, will be accepted as they are, stock up on (76%) is a combination of two basic rules: precise pain KPS ≤30 EP 8 4.5 0,109 physical and psychical strengths to be able to cut one’s diagnosis and early application of MIP. NEP 2 1.5 0,180 own path in familiar surroundings. KPS ≥70 BP 3 3 0.056 The sick child, siblings and parents receive professional and individual care as well as qualified medical and PE 1.F337 Conclusions: The intervention of PCT show a nursing attendence if necessary to enable them to cope significant decrease in the intensity of pain seven days with dilemmas during the last phase of life. Effects on pain and anxiety of holistic hospice after the first consultation. The target groups for the “Sterntalerhof” are: nursing intervention program for in-patient of OUT PCT partial pain control Families with a child suffering from cancer; hospice palliative care unit KPS, ≤30 group, partial pain control (few number of Children with severe chronic diseases or after brain patients and fragile situation). damage; Choi S E1, Kang E S2, Choe W S3 KPS ≥70 group partial pain control (in correlation with Children on palliative care with their parents and 1Sunlin Hospital / Kosin University, Hospice Center, OUT PCT group). Those patients have more than one siblings; Pohang, Korea, Republic of, 2Kosin University, College specific care team at the same time (oncologist, Families with one parent suffering from a life of Nursing Science, Pusan, Korea, Republic of, 3Ewha radiotherapist?), and the coordination between them is threatening disease. Womans University, Graduate School of Clinical Health not satisfactory as well It will be important to promote The therapeutical team consists of: Sciences, Seoul, Korea, Republic of randomized studies and the ussefulness of promoting Psychotherapists, physiotherapists, pastor, music and cooperation between PCT, and other professionals, to art therapists, therapists on therapeutic vaulting; Purpose: The purpose of this study was to test the improve patients quality of life. in addition a mobile palliative care team with SRN’s effects on pain and anxiety of holistic hospice nursing and a medical doctor qualified in palliative medicine intervention program(HHNIP) which was developed by and palliative nursing is available when needed. CHOI for in-patient of hospice palliative care PE 1.F339 “Sterntalerhof” also means, that there is always a place, unit(HPCU). The design of this study was one-group time and attendance for dieing childen on spot. pretest-posttest research. Sterntalerhof - therapy Conclusion: A hospice for children is not equivalent to Method: The subjects of study were 27 patients those a hospice for adults. The “Children-Hospice who were over 18 years old and admitted in HPCU of S Herincs G1, Graschopf L2 Sterntalerhof” is a place for families with their sick hospital in P city in South Korea with agreement in 1Caritas Eisenstadt, Vienna, Austria, 2Sterntalerhof, child and the other kids to stock up physical and hospice palliative care in their terminal disease. The Stegersbach, Austria psychical strengths to enable them to get through their period of data collection was from April 6, 2004 to April most important part of life - dieing at home. 20, 2005. A HHNIP by CHOI was used as a tool for The goal of the Sterntalerhof is to accompany families “Sterntalerhof” gives children a “today” because their treatment in this study. And two tools to test for the in exceptional situations holistically. These situations tomorrow is written in the stars. effects of HHNIP were used in this study with a view of include but are not limited to serious illnesses, whole person: Brief Pain Inventory (BPI-K) by Young- disabilities, and traumatic experiences. Although Ho Yun(1998) to test the degree of pain in physical special attention goes to our young guests, who are PE 1.F341 aspect, State-Anxiety Inventory by Spielberger(1975) to chronically and/or critically ill, the Sterntalerhof test the degree of state-anxiety in emotional aspect. considers itself a rest stop (which is the original Voices of parents: The lived experience of caring The collected data were analyzed by Paired t-test with meaning of hospice) for all family members. Here they for a child with a life-threatening and life- SPSS/WIN 12.0 program. can find peace and strength in order to pursue their limiting diagnosis within existing social policies Results: walk of life with more confidence. The Sterntalerhof (1) Hypothesis No. 1: “The experimental group which team consists of a doctor, a spiritual counselor, a Fowler-Kerry S E1 received Holistic Hospice Nursing Program will have a psychotherapist, a special education teacher, a social 1College of Nursing, Nursing, Saskatoon, Canada lower degree of pain than before” was supported (t=- worker, a music therapist, and an art therapist. Its 10.585, P= .000). mission is to function as a bridge between complete Aim: To describe, interpret, and link through voices of (2) Hypothesis No. 2 : “The experimental group which medical care in a hospital and independence at home, parents the lived experience of caring for a child with a sessions received Holistic Hospice Nursing Program will have a where the family can rely on its own resources as a life-limiting and life-threatening diagnosis within the lower degree of state-anxiety than before” was source for power and strength. With this in mind, the context of existing social polices.

(Friday) supported (t=-8.234, P= .000). Sterntalerhof is simply there for families in need and Methods: Critical ethnology and Habermas’ critical Conclusion: As the results, this HHNI was testified for available for one or more therapeutic stays. theory framework provided a framework to deconstruct

Poster the effects on pain, state-anxiety. Its effects were proved Therapy: The core of our therapy is a holistic and power structures and relationships to reveal and redress by decreasing the degrees of pain and state-anxiety. family-centered approach. We offer spiritual (patient) oppression by unlocking silent discourses, Therefore it can be used actively for whole personal care, bereavement counseling as well as terminal care. emancipating voices, and empowering families. well-being of in-patients in HPCU and also can be Our care focuses on our guests as a multi-dimensional Results: Stories of six parents were captured and four applied in hospice practice as a useful program of unit in their physical, psychological and spiritual themes emerged. multi-disciplinary team approach by hospice essence and considers the individual needs of each 1. Mother as Caregiver, described the profound effect professionals. person as well as family. The palliative care aims to that assuming the caregiving role had on the lives of improve coping mechanisms for one’s disease and these mothers. contribute to our guests’ quality of life. Additionally, 2. “Respite and Coping”, explored and identified the PE 1.F338 the Sterntalerhof attempts to develop psychosocial help overwhelming need for parents to obtain relief through that meets the needs and psychodynamic background respite, so they could parent better. Catalonia palliative care teams effectiveness in of each guest. Essential to our work are art therapy, 3. “Surviving Past Expectancy”, explained how their pain control of advanced cancer patients music therapy, and therapeutic work with horses child, outliving their initial diagnosis, placed another including therapeutic horseback riding. Our counsel stress and burden on the family. Casademont R R1 and support are individual-focused and are The final theme, “Getting Everyone on the Same Page”, 1Hospital Sta Caterina, Unidad Cuidados Paliativos, complemented by the presence of our therapeutic described frustrations parents experienced trying to Girona, Spain horses. Our care enables deep human encounters and find services and act as coordinator for their child and relationships in spite of disease and frailty and lets our family. Aim: The effectiveness of PCT has been demonstrated guests experience their invulnerable dignity. Due to Conclusion: This study provided a unique and in several studies In 2005 CATPAL group : “Effectiveness being gregarious animals, horses are especially suited valuable optic to an untapped data source, which until of symptom control in advanced cancer patients by for therapeutic interventions. Horses have expanded now has remained silent. The main findings were the palliative care teams in Catalonia, Spain”. their competency in relationships to human beings as untapped resilience and strength of each participant, The present research assess the effectiveness in pain part of their domestication and allow for that the uniqueness of each of their stories, and the reality control by different PCT acording to KPS. relationship in the close physical contact during that the harms associated with having a child with a Methods: Multicentre, descriptive study. (therapeutic) horseback riding. The sensation of being life-limiting and life-threatening diagnosis can certainly Patients with advanced cancer newly refered to PCT, carried and cradled - especially for people with a be lessened through social polices that direct the

112 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) provision and access to pediatric palliative care services alleviate their suffering; (home visits and admissions in The indicators used in the evaluation of the to all who require them. A researched-based the in-patient unit). socialisation process were qualitative: the relationships understanding of the lived experience and the 3) Education for staff/carers involved in the care of which were built, the interest for the proposed contextual nature of parents’ perceptions provides these children. activities, the satisfaction degree expressed by children policy-makers, politicians, and health care professionals Results: We succeed to form a working group from and their parents, if they continued to meet after the an opportunity to offer specialized services and people working in palliative care, local and national programme ended and quantitative: the number of programs to children with life-limiting and life- authorities for child protection which elaborated a children which responded to invitations, numbers of threatening diagnosis and their families. “Minimum Standards of Care for Residential Homes” meetings and number of activities in which they and a guideline which give specific instructions about participated. the provision of palliative care for children living in Results: All the parents/children rated the PE 1.F342 state institutions. The documents are now in the stage interventions as helpful. Many of them said that they of legislative project which are to be adopted by don’t feel isolated any longer because of the social Different approaches for the same disease in Ministry of Social Protection. support which they received. pediatric palliative care: Two cases of severe Conclusions: The children living in state institutions Conclusion: Qualitative and quantitative data indicate dyskeratosis congenita deserve equal access to palliative care, and the beneficial effects of interventions for disabled children “Minimum standards” will contribute to the provision and their families. Frecventation of day centres and Führer M1, Duroux A1, Grasser M1, Borasio G D2 of care. other social events, not only give the possibility to 1Interdisciplinary Center for Palliative Medicine and spend few pleasurable hours, but also bring meaning Dept. of Pediatrics, Munich University Hospital, and dignity in the life of children needing palliative Munich, Germany, 2Interdisciplinary Center for PE 1.F344 care in a society which often neglects the needs of most Palliative Medicine, Munich University Hospital, needed. Munich, Germany Needs assessment for pediatric palliative care in a region of Austria Background: Severe congenital disorders play a major PE 1.F346 role in pediatric palliative care. We report on 2 children Belosa V1, Sovinz P2, Strohscheer I1 suffering from a rare congenital condition: Hoyeraal- 1Medical University Graz, Graz, Austria, 2Medical Invasive diagnostic and therapeutic measures in Hreidarsson Syndrome (HHS), a severe form of University Graz, Department for Pediatrics, Graz, pediatric palliative care dyskeratosis congenita, causes progressive organ failure Austria (haematopoiesis, immune system, intestinal mucosa) Grasser M1, Duroux A1, Weber L2, Kinast K1, Borasio G D3, due to a mutation in a telomerase gene. The EAPC Task Force Pediatric Palliative Care set Führer M1 Patients: Two male pts presented at the age of 8 mo. standards for pediatric palliative care. In this sense at 1Dr. von Haunersches Kinderspital und (pat.1) and 3 yrs. (pat.2) with refractory diarrhoea and the moment there is a lack for pediatric palliative care Interdisziplinäres Zentrum für Palliativmedizin der severe pain under enteral nutrition. Both received total in Austria. We conducted a needs assessment for LMU, Koordinationsstelle Kinderpalliativmedizin, parenteral nutrion and an ileostomy. Progressive palliative care for children with life-limiting illnesses München, Germany, 2Dr. von Haunersches immune deficiency led to the diagnosis of HHS in both including an epidemiological approach and an analysis Kinderspital, Pädiatrische Nephrologie, München, cases. Both families decided against bone marrow of the existing structures for palliative care in a province Germany, 3Interdisziplinäres Zentrum für transplantation due to the poor prognosis. The children of Austria. In semi-structured interviews we evaluate the Palliativmedizin der LMU, München, Germany were taken care of by the Munich Coordination Centre view of different stakeholders regarding the provision for Paediatric Palliative Care (CPPC). of palliative care, expertise in delivering end-of-life-care Introduction: In pediatric palliative care there are Pat 1: Due to the parents’ explicit wish for life and wishes for the future. often situations requiring difficult decisions, especially prolongation, he received regular transfusions and In 2007 one hundred and one children, adolescent and concerning the usefulness and necessity of invasive activated factor VII because of severe bleeding from his young adults (0-25 years) died in Styria, 27 children of diagnostic and therapeutic procedures. We report 2 ileostomy. After diagnosis he spent 30 mo. in hospital ‘palliative care relevant’ diseases. Most of the children patients where difficult decisions led to positive 400 km away from home. During the last 6 mo. of life died of congenital anomalies (48%) and malignant outcomes. the CPPC was able to establish home-based palliative neoplasia (22%). The others distribute to disorders of Patient 1: The 23/4 yrs old boy suffered from Menkes care. The child died with 6 yrs. peacefully at home. the nervous system, diseases of heart and circulation Syndrome, a copper malabsorption disorder leading to Pat. 2 was discharged after diagnosis. Home-based systems, blood, digestion and respiratory organs. quadriplegia, severe epilepsy and mental retardation. In palliative care could be established in close cooperation Despite the fact, that the number of the children is the past he suffered from severe pain of unknown between the CPPC and the family pediatrician, which small, the stakeholders identify a need for structured etiology which had been treated with morphine and allowed for successful management of pain crises palliative care. In the interviews they shared the same tetracannabinoids. Due to acute, therapy-refractory caused by gastrointestinal obstruction. Re- wishes concerning training in palliative medicine and a pain an x-ray and abdominal contrast radiography hospitalisations could be avoided, the pt. died at 5.5 development of a palliative care team who works in the (ACR) were performed, which showed a diaphragmatic yrs. peacefully at home. whole province and cooperates with other palliative hernia with bowels in the thorax. After discussions with Conclusion: Because of the complex and poorly care services. parents, surgeons and anaesthetists, an operative repair known symptoms, palliative care in children with rare The present study delivered an insight into the of the hernia was performed. The severe pain ended diseases is a real challenge. A pediatric palliative care situation of children with life-limiting illnesses which is promptly after surgery, and pain medication could be team can provide successful coordination of home- comparable to the other regions of Austria. According reduced. After 3 months of good health, acute pain based palliative care and 24/7 counselling despite long to the small numbers of inhabitants in each province, ensued again due to a contralateral diaphragmatic distances. Even in children with the very same disease, these data allow to develop a model for the provision of hernia. The patient died after surgery due to cardiac the individual needs and values of the patient and palliative care in the whole country. A transition failure. family provide the guidelines for decision making and between settings could be achieved by founding of an Patient 2: The 2 yrs old patient is a microcephalic and for any medical intervention. interdisciplinary care team with special palliative care severely handicapped boy who suffered from expertise. In this team the experiences of the adult gastroesophageal reflux disease and poor weight gain. palliative care service could be used. The offer of Three months after placement of a percutaneous PE 1.F343 training in palliative care should be extended, one enterogastrostomy (PEG) he developed massive ‘Center of Competence’ could serve Austria. abdominal cramps and weight loss. His parents asked us Raising standards of care in residential homes whether fluids and nutrition could be withdrawn to for children from Romania. From dream to end his suffering. Since the origin of his symptoms was reality PE 1.F345 unclear, we convinced the parents of the need for further diagnostic measures. An ACR showed a wrong sessions Birtar D1 Contributions of the hospice services to reducing placement of the PEG in the colon. A new PEG

1Hospice Casa Sperantei, Bagpuss Paediatric Unit, the social isolation of disabled children and placement resulted in immediate resolution of (Friday) Brasov, Romania their families symptoms and subsequent weight gain.

Conclusion: In pediatric palliative care, the burden of Poster During the past years, Hospice “House of Hope” Brasov Popa C1, Birtar D1 diagnostic measures as well as the wishes and attitudes has become aware of the growing problem relating to 1Hospice Casa Sperantei, Bagpuss Paediatric Unit, of child and parents require careful consideration. children suffering from life-limiting or life-threatening Brasov, Romania However, when severe symptoms are unexplained, illnesses, who are living in State-run institutions. appropriate diagnostic and therapeutic measures, even We started with a cooperation with the local authorities Background: The disabled children must be if invasive, are warranted. of Child Protection in 2005, aiming to improve the care considered as part of the society. We shouldn’ t hide of children with limited prognosis from state them, we shoudn’t pity them, but we need to support institutions. We did this through direct care of the them to live along with other children. PE 1.F347 children, education, organizational and management Every child should benefit from equal chances to support. socialise. The reality in Romania is far from those Pediatric palliative care in spinal muscular The next step was trying to influence things at a ideals. Our society still look at the handicap as a stigma. atrophy type I (SMA I) - Individual counselling national level. For this reason we started the project Many disabled children are left out from kindergarten regarding therapeutic decisions “Every child matters”, which aimed to raise standards and schools. In time they are marginalised and will and provide equality of care for Romanian children never be integrated in the society. Duroux A1, Grasser M1, Kinast K1, Borasio G D2, Fuehrer M1 needing palliative care, whether at home or abandoned We organised complex social support interventions for 1Interdisciplinary Center for Palliative Medicine and and living in State-run institutions. children and families. Dept. of Pediatrics, Munich University Hospital, The project had 3 main components: Aim: To evaluate the impact of social support offered Munich, Germany, 2Interdisciplinary Center for 1) Lobbying the government and health care by hospice to reduce the social isolation in which these Palliative Medicine, Munich University Hospital, institutions to provide better care and resources for this children and families live. Munich, Germany group of children, including the publication of a Method: 30 families received questionnaries to “Minimum Care Standards” guide for children with a evaluate the effects of the participation in the day- Background: SMA I causes progressive muscular life-limiting or life-threatening illness, adopted by the centre, educational centre, summer clubs, summer weakness and death through respiratory insufficiency authorities for child protection. camps and support groups for reducing the social during the first 2 years of life if no mechanical 2) Medical and Practical assistance to children from isolation of their children and to induce resilience in ventilation is started. Decision making regarding Brasov county and their carers/family members to their family. ventilation and palliative care can differ significantly

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 113 Poster sessions (Friday)

between families. PE 1.F349 Some challenges Case vignettes: • Raising funds for exchange visits Pat.1: Diagnosed at 6 wk, 1st re-hospitalisation (RH) at The Soweto Hospice Caregiver and Child • Raising the profile of palliative care for children 10 wk due to dyspnoea. Parents refused ventilation, the Empowerment Unit: Empowering the • Expanding training in Children’s Palliative Care Munich Coordination Centre for Pediatric Palliative disempowered • Increasing the reach of palliative care for children. Care (CPPC) was involved. Re-admission to the ICU with severe dyspnoea, O2-therapy and iv morphine. Pt. Ferreira L1 died on ICU at 11 wk. 1Hospice Witwatersrand, Paediatric Palliative Care, PE 1.F351 Pat. 2: Diagnosed at 7 mo., 1st RH at 12 mo. with Johannesburg, South Africa dyspnoea, recurrent intubations, CPPC involved. Home-based palliative care in children: The Discharged home with non-invasive ventilation. 2nd Social problems of caregivers and children are resulting Coordination Center for Pediatric Palliative Care RH at 16 mo. due to RSV-infection. Different attitudes in lengthy, protracted hospice stays for paediatric at the University of Munich towards therapy between the parents. Tracheostomy inpatients, often outliving the initial reason for and discharge with invasive ventilation. 3rd RH at 18 encounter and acute medical conditions. Excellent Führer M1, Duroux A1, Grasser M1, Kinast K1, Klein B1, mo., pt. still alive at 26 mo. unilateral medical care from healthcare providers is Borasio G D2 Pat. 3: Diagnosed at 12 wk, non-invasive ventilation disempowering caregivers; bringing about feelings of 1Interdisciplinary Center for Palliative Medicine and initiated at 11 mo., CPPC involved. Acute respiratory inadequacy and promoting neglect. Caregivers may Dept. of Pediatrics, Munich University Hospital, deterioration while inpatient, parents refused handover responsibility for their child´s disease process Munich, Germany, 2Interdisciplinary Center for tracheostomy, pt. received iv fentanyl and died at 13 and progress to the healthcare provider and take a back Palliative Medicine, Munich University Hospital, mo. on ICU. seat to their child´s illness. Ignorance, non disclosure, Munich, Germany Pat. 4: Diagnosed at 5 wk, RH at 3 mo. due to fear, language barriers and lack of knowledge and pneumonia, O2-therapy, discharged home. CPPC counseling surrounding childhood illnesses causes Background: Most children with life limiting diseases involved in acute respiratory crisis, home visit and caregivers to default treatment or give substandard care. and their families wish to spend as much time as admission to children’s hospital. Improvement due to The Caregiver and Child Empowerment Unit, a new possible together at home. However, the majority of the physiotherapy and O2. 2 days later acute deterioration initiative by Hospice Soweto, aims to empower children 600 children and adolescents who succumb to life with severe dyspnoea, no intubation, iv morphine. and their caregivers to reach their potential (no matter limiting diseases every year in Bavaria die in hospital. Died at 4 mo. in hospital. their background) through health education and skills This situation led to the development and Pat. 5: Diagnosed at 6 wk, parents refuse ventilation. training, subsequently decreasing future admissions or implementation of the Munich University Multiple home visits by the CPPC. Admission to increasing time between future relapses. The objective Coordination Center for Pediatric Palliative Care children’s hospice at 4 mo., treated with oral morphine is to provide an inpatient, interactive, intensive, four (CPPC) in 2004. and lorazepam. Good quality of life. Died at 5.5 mo. in week program, facilitating feasible and economical Project description: In order to improve quality of children’s hospice. ways to provide resources, skills and knowledge to the life of children with life limiting diseases the Conclusions: Decision making can vary significantly family unit through the primary caregiver. Aspects multiprofessional CPPC team works in the following in children with SMA I. Medical facts, personal values receiving particular attention include: Child care; main areas: coordination of home care, networking and and hopes of the family as well as their resources need Nutritional counseling with practical cooking skills and identification of resources, education and teaching. to be considered. A pediatric palliative care team can applications; Childhood development and stimulation Results: Between 3/04 and 5/08 the CPPC took care of offer counselling, support and care coordination to the at age-appropriate levels for each child; Health talks a total of 149 patients (median age 5 y, range 7d-43y). families. regarding both child and maternal health as well as In 7 families prenatal palliative care was provided. 88 general topics; Support groups, which may be extended pts died so far. Most children suffered from congenital into communities; Financial skills, regarding individual malformations/diseases (27%), neoplasm (23%) or PE 1.F348 marketing and preparing relevant documentation e.g. neurological diseases (18%). In 72% of pts the CPPC CV, budgets, bank accounts, savings plans and team was recommended by pediatric specialists in the From arbitrariness to desirability; Palliative care application to social services; as well as initiating hospital, in 22% the family itself asked for CPPC for children in the Netherlands income generation projects with extension into the support. The leading symptoms in more than 50% of communities as micro-businesses. Caregivers and pts were pain and dyspnoea. Under the care of the Groot M M1, Galesloot C2, Stoelinga W3 children are assessed at an individual level and are CPPC 92% of the children aged 1-16 yrs and 41% of 1Comprehensive Cancer Centre, Palliative Care, supported so as to achieve their greatest potential. children <1y died at home (compared to 50% and 10% Nijmegen, Netherlands, 2Integraal Kankercentrum in Bavaria in 2005, respectively). The working group for Oost, Palliative Care, Nijmegen, Netherlands, pediatric palliative care at Munich University Hospital 3Kinderhospice De Glind, De Glind, Netherlands PE 1.F350 organised three bi-annual symposia on pediatric palliative care since 2004. In the last 4 years, 134 health Introduction: Palliative care for children is getting The ICPCN - An international resource to care professionals of Munich University Children’s more attention over the last few years. More people and promote and assist the worldwide development Hospital attended an in-house training in pediatric organizations are becoming aware of the need to of palliative care for children palliative care organized by the CPPC. Currently, a respond to the specific situation and problems of these concept for pediatric palliative care for the whole of children and their families. To priotize actions and Boucher S J1, Marston J M2 Bavaria based on the CPPC model is being developed in organize improvements, it is necessary to know how 1International Chidlren ‘s Palliative Care Network, cooperation with the Bavarian Social Ministry. daily practice works, who are involved and in what way Information, Assagay, South Africa, 2International Conclusion: CPPCs can improve the quality of and what the experienced problems are. Children, Chair, Bloemfontein, South Africa pediatric palliative care, optimize the utilisation of Aims: To get insight in: the care network of children in existing resources and enhance the dissemination of palliative care, the organizational and other favourable The first children’s hospice, Helen House in Oxford, knowledge. obstacles in this care and possible ways of solution. was begun by Sister Frances in 1982 - 15 years after the Study design and methods: We used the following start of the first adult hospice. Since then the children’s methods: focusgroup - and individual interviews, hospice movement has lagged behind the general PE 1.F352 questionnaire, ´open space´ working conference. hospice movement. Results: In palliative care for children two different New children’s hospices are developing steadily around The value of play within paediatric palliative networks exists; a primary one consisting of persons the world and adult palliative care services are care and organizations in the near surrounding of the child becoming more aware of the very different needs of (GP, hospital - and primary care professionals, close children. Advocacy for the right of children to Boucher S J1 sessions family and friends, health insurance etc) and a more paediatric palliative care is also increasing. 1International Chidlren’s Palliative Care Network, extensive one. This latter network can include: In response, the International Children’s Palliative Care Information, Assagay, South Africa

(Friday) consultants, all kind of therapists and psychosocial Association (ICPCN) was formed in 2005 as a network caregivers, transport services, employer(s) parents, of organizations and individuals working in the field of Childhood is a time of continuing growth and

Poster education, funeral service etc. palliative care for children. It is part of the Worldwide development, adversely affected by life-limiting and Obstacles can be classified in five themes: child & Palliative Care Alliance where it plays an advisory role chronic illness such as HIV/AIDS. A survey amongst parents, structure & organization, commitment & on issues related to children and adolescents and children and their parents within a group of hospices in attitude, information, expertise. The possible solutions ensures that children are included in all policies and South Africa revealed that most children rated having can also be classified: continuity, coordination & programmes. opportunities to play as being only slightly less gearing of activities, knowledge, becoming conscious, The ICPCN shares a vision that the total needs of life- important than food and shelter. Most adults surveyed giving attention, practical solutions. limited children and their families should be met and scored play near the bottom of their list of a child´s Conclusions: In general, palliative care for children is its mission is to promote the world-wide development needs. Promoting normal childhood development too much dependent on positive intentions and the of children’s palliative care through providing within palliative care improves quality of life and coincidental existence of knowledge and expertise. opportunities for networking and shared learning for develops self-esteem, improved communication and Because of this situation, fragmentation, problems in those involved in children’s palliative care social skills, and the ability to express negative and the gearing of people and activities and parents internationally; and to provide a central resource of positive emotions through play, art, music and words. becoming overburdened often is the case. Based on the information. While health professionals focus on the clinical results of the study, a network of professionals Some objectives treatment of children with illnesses such as HIV/AIDS concerned with palliative care for children is making a • To provide a “One-Stop Shop” information system and TB in Southern Africa, it is of equal importance to plan of action which will be carried out in the coming managed by an International Information Officer focus on their psychological health and wellbeing. years. • To pilot and review a programme of expertise - “Through play the child expresses traumatic fixations, sharing through visits and exchanges by providing conflicts and hostilities. The child also uses play to scholarships disguise genuine conflicts and difficulties, or he may • To ensure children’s palliative care is included in use play to relax tension and anxiety. Of greatest international meetings, journal articles and national importance is the fact that he discharges aggression and associations seeks to overcome traumatic anxieties through play; it • To develop a fund to support the activities acts as a regulative mechanism.” • To carry out a survey of existing hospice and Understanding Children’s Play By Hartley, Frank and palliative care services and from this to identify gaps in Goldenson. provision. Chronically and terminally ill children have an even

114 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) greater need for the distraction, psychological benefits Children’s pain was scored in parallel using DEGR sampling. Data sources were semi-structured interviews and the developmental stimulation that play provides. administered by the ward nurses and Oucher and observations of nurse-patient interactions. The one Hospice and paediatric palliative care centres in South administered by a research nurse. hour private interviews began by asking, “How do you Africa are realising the value and importance of Results: Thirty families agreed to participate in the convey compassion to the elderly people you care for promoting play within their programmes. study and were recruited. Pain score data were who are dying?” Interviews were recorded and I have written a handbook entitled “Promoting Early incomplete for nine. 143 DEGR scores and 92 Oucher transcribed. Observations were noted in a journal. Childhood Development within Paediatric Palliative scores were obtained. Scores from either scale were Narrative analysis involved reading and re-reading data, Care” that covers the developmental stages of children, discarded if too remote from their paired score from the highlighting phrases expressing a key idea, and emphasises the importance of play and how to other. Forty-six complete sets of paired data were grouping elements to identify themes. Study incorporate this knowledge into a comprehensive and obtained from 21 subjects. limitations include small sample and investigator bias. holistic daily programme for vulnerable children in an Oucher scores fell to zero while DEGR scores remained Further research that includes quantitative elements African palliative care setting. significant. Relationship between the scores using the and a larger sample is suggested. two scales was complex, with reasonable agreement at The core theme was attention to the “essential lower scores and the Oucher reading higher than the ordinary.” The essential ordinary are tasks of everyday PE 1.F353 DEGR at higher scores. living such as eating, sleeping and bathing that are not Conclusions: Our data suggest that the DEGR is more given much thought until something occurs which Evidence based modelling of the trajectory of sensitive to chronic pain than the Oucher, while the prohibits one from doing them. The nurses in the study life-limiting conditions: Are the ACT categories Oucher is more sensitive to acute pain than the DEGR. found assisting the dying elderly with essential valid? Behaviour patterns associated with chronic pain in ordinary acts as routes to convey compassion. How they children begin to become apparent after only seven to went about helping patients with the essential ordinary Hain R1, Simpson S2, Wood F3, Barnes E4 fourteen days. Caution may be necessary in is described in sub-themes: (a) attention to the “simple 1University Hospital of Wales, Cardiff School of interpreting data from faces-type scales beyond this. things,” and (b) keeping the promise to never abandon. Medicine, Department of Child Health, Cardiff, United The findings were further analyzed using Salvage´s Kingdom, 2Cardiff University, South East Wales Trials social construction of caring. Unit, Department of Primary Care & Public Health, PE 1.F355 The study has relevance for all carers. Both participants Clinical Epidemiology Interdisciplinary Research in a compassionate interaction may be affected. This is Group, Cardiff, United Kingdom, 3Cardiff University, Dose-response and serum levels: Morphine and discussed using Watson’ theory of transpersonal caring Department of Primary Care and Public Health, M6G in children with cancer and MacRae’s social construction of compassion. Clinical Epidemiology Interdisciplinary Research Group, Cardiff, United Kingdom, 4Cardiff University Hain R1, Mashayekhi S2, Routlegde P3 School of Medicine, University Hospital of Wales, 1University Hospital of Wales, Cardiff School of PE 1.F357 Department of Child Health, Cardiff, United Kingdom Medicine, Department of Child Health, Cardiff, United Kingdom, 2Tabriz Pharmacy Faculty, Department of Dronabinol in palliative medicine Aim: to begin to validate the ACT/RCPCH categories by Pharmacy, Tabriz, Iran, Islamic Republic of, 3University providing the first step towards generating testable Hospital of Wales, Cardiff School of Medicine, Likar R1, Rupacher E1, Kager H1 models of life-limiting conditions. Department of Clinical Pharmacology, Cardiff, United 1General Hospital Klagenfurt, Anaesthesiology and Patients and methods: Phase 1, four focus groups Kingdom Intensive Medicine, Klagenfurt, Austria were convened comprising medical/PAM, education and social care professionals from South Wales with an Aims: To examine the relationship between analgesia Aims: We examined the efficacy and the adverse interest in PPC. Semi-structured discussions used and serum morphine and M6G concentrations in effects of 2.5% dronabinal drops in the indication of vignettes from each ACT/RCPCH category. Phase 2 children with cancer. nausea, vomiting, and inappetence on the palliative interviews were carried out with families of children Patients and methods: Seven patients under the care care unit of the Klagenfurt regional hospital. with LLC under the care of the Specialist Paediatric of the regional Paediatric Oncology Unit in Cardiff and Methods: 45 patients were enrolled: 24 males and 21 Palliative Care/Symptom Control Team at the the Vale NHS Trust who were prescribed morphine. Six females whose mean age was 70.2 years, and whose Children’s Hospital for Wales. They were purposively blood samples were drawn from indwelling venous mean weight was 61 kg. selected to encompass all four ACT/RCPCH categories. lines at intervals between administration of morphine The patients had the following disorders: 11 patients Semi-structured interviews followed a schedule derived and 8 hours after its discontinuation. Morphine was with Neoplasm of the colon, 9 patients with Bronchial from phase 1 and focused on specific important analysed using high performance liquid neoplasm, 5 patients with Neoplasm of the pancreas, 2 experiences. Interviews were audio recorded, chromatography (HPLC). Its active metabolite, patients with Breast cancer, 2 patients with transcribed and analysed using computer assisted morphine-6 glucoronide (M6G), was measured using a Oropharyngeal neoplasm, 3 patients with Neoplasm of qualitative data analysis software. highly sensitive enzyme linked immuno-sorbent assay body of the uterus, and 5 patients had other Results: Phase 1: 25/38 professionals from 14 (ELISA). Pain was assessed using a simple Faces scale, carcinomatous diseases. backgrounds approached agreed to participate. Phase 2: each time a sample was withdrawn. The mean period of observation was 12 days. The 30/76 families approached agreed to participate, of Results: Pharmacokinetic profiles were obtained in 7 starting dose of dronabinol was 2.5 mg b.i.d. If, after whom 4 withdrew or were not suitable. There were patients ranging in age from 2.4 to 16.4 years (median three days, there was no adequate symptom relief, the four, three, seven and 12 families categories I, II, III, and 7.6 years). Pharmacokinetic parameters for M and M6-G dose was increased to 5 mg b.i.d. IV respectively, total 26). In 9/26 families, their child were comparable with those of previous studies. The Results: The dose was again increased to 10 mg b.i.d. if was no longer alive. In 8/26, two individuals were half life of M6-G (329 minutes) was considerably larger there continued to be inadequate effect. The mean interviewed. There were 24 mothers, nine fathers, one than that of M (140 minutes). Clearance of M was dronabinol dose over a period of 10 days is shown in sibling and two foster carers). higher than in adult studies. Side effects were: figure 1. A slight improvement trend was achieved with Thirty-four milestones in 5 phases were identified. drowsiness (7/7, 100%), nausea and/or vomiting (4/7, respect to nausea and there was a significant reduction Some occurred in all categories, others only in some. 57%), pruritus (2/7, 28%), urinary retention (1/7, 14%). in the incidence of vomiting. The incidence of The phases were: Diagnosis, Loss of normality, There were no reports of respiratory complications. inappetence was also clearly reduced. No adverse effects Adjusting to new normality, Palliative phase, Death. Pain scores varied between 1 and 4 out of 5. There was were observed at these doses. Conclusion: Milestones fell into five similar phases in no correlation with serum concentrations either of Because in some cases dronabinol dosed b.i.d. does not all four categories. Many were common to all four morphine or M6-G, or the molar ratio of the two. produce sufficient effect in the patients, we now use groups, suggesting the ACT/RCPCH categories describe Maximum serum concentrations were comparable with dronabinol t.i.d. We start with 2.5 mg dronabinol t.i.d. a group of conditions that have something in common. other studies. If, after 2-3 days there is insufficient improvement in Other milestones occurred in only three, two or even Conclusion: This study provides preliminary data symptoms as to nausea, vomiting, and inappetence, the one of the ACT/RCPCH categories arguing that suggesting that children remain in pain despite dosage is increased to 5 mg t.i.d. up to a maximum dose sessions trajectories of conditions in the four categories are significant serum concentrations of morphine and M6- of 10 mg t.i.d. distinct from one another. G. The relationship between serum concentrations of Conclusion: The use of dronabinol was considered (Friday) This provides preliminary evidence that the opioid and relief of pain is not straightforward. Some under the following requisites:

ACT/RCPCH categories are valid tools for research and adverse effects, particular nausea and pruritus, may be In patients in whom other analgesics did not have the Poster service development. commoner than is usually thought, while others desired effect or were not tolerated. In patients who (particularly respiratory problems) did not occur at all benefit from dronabinol´s broad profile of activity in this series. (analgesia, antiemesis, appetite enhancement, mood PE 1.F354 elevation) as in palliative medicine, oncology.

Correlation of DEGR and Oucher pain scores in PE 1.F356 children with cancer: What can it tell us about the nature of chronicity in children’s pain? Conveying compassion to the dying elderly through attention to the essential ordinary Hain R1, Jenney M2, Davies R3 1University Hospital of Wales, Cardiff School of Perry B1 Medicine, Department of Child Health, Cardiff, United 1Athabasca University, Center for Nursing and Health Kingdom, 2Children’s Hospital, Cardiff, United States, Studies, Edmonton, Canada 3Swansea University, Swansea, United Kingdom Compassion is a hallmark of palliative care. The Aim: To validate the Douleur Enfant Gustave-Roussy literature upholds the import of being compassionate, (DEGR) by exploring its relationship with the well- but has few descriptions of how this is done. The aim of established Oucher pain scale using standard this study was to explore ways which nurses convey correlation techniques, and to explore the chronicity of compassion to the dying elderly. The elderly in this children’s pain by comparing the changing study were over 65 and dying from a disease other than relationship between Oucher and DEGR scores. cancer. Compassion was defined as sensing another’s Patients and methods: Clinical methods comparison suffering combined with a desire to alleviate or reduce and correlation pilot study. Participants were children such suffering. aged 3 - 19 years receiving treatment for pain related to The research design was descriptive phenomenology. A cancer on an regional specialist oncology ward. purposive sample of 7 nurses were found by network

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 115 Poster sessions (Friday)

PE 1.F358 the same time these experiences are balanced by As a result of the increase in the number of Care of the sources of comfort and strength found within the self Dying Pathways (Liverpool Care Pathway) used to Transitions to palliative care for older people in and among relationships with family, friends, health support dying in these homes, a pathway facilitator was acute hospitals in the UK care providers and community. funded to further encourage the use in these homes Conclusion: These findings illuminate the complex, and to increase uptake of those homes not yet involved Gott M1, Ingleton M C2, Ryan T2, Seymour J3, Bennett M4, multi-dimensional character of living with cancer in in the scheme. Noble B5, Cobb M6 old age. They show that older people living with cancer This poster shows the results of the two audits and the 1The University of Sheffield, SISA, Sheffield, United are resilient as well as vulnerable. The results of this effect, so far, of the facilitator post. Kingdom, 2The University of Sheffield, Centre for study reveal positive practice on the part of health Health and Social Care Studies, Sheffield, United professionals but also show where changes in attitudes Kingdom, 3The University of Nottingham, Sue Ryder and behaviour would enable more empathic PE 1.F363 Care Centre, Nottingham, United Kingdom, 4Lancaster understanding of older peoples’ life situation and University, International Observatory on End-of-Life facilitate a more effective fostering of their resilience. The views, experiences and needs of older Care, Lancaster, United Kingdom, 5The University of lesbians, gay men and bisexual people about end Sheffield, Palliative Medicine, Sheffield, United of life care Kingdom, 6Sheffield Teaching Hospitals NHS Trust, PE 1.F361 Sheffield, United Kingdom Almack K1, Seymour J1, Kennedy S1, Bellamy G2, Sanders C3 Quality of end-of-life policy in the elderly: 1University of Nottingham, School of Nursing, Aims: Addressing the ´substandard´ care older people Differences between geriatric and non-geriatric Nottingham, United Kingdom, 2University of Sheffield, receive at the end of life is a key public health concern. wards? Sheffield, United Kingdom, 3University of Manchester, An area of particular policy priority is palliative care Manchester, United Kingdom provision in acute NHS hospitals in the UK where a Piers R1, Benoit D2, Schrauwen W3, Velghe A1, Petrovic M1, proportion of dying patients receive very poor care. Van Den Noortgate N1 Background: There is recognition that palliative and This large scale three year Department of Health 1Ghent University Hospital, Geriatrics, Gent, Belgium, end of life care should address the needs of minority funded study (over £460,000) will explore the need to 2Ghent University Hospital, Intensive Care, Gent, groups, including lesbians, gay men and bisexual (LGB) improve care for older people at the end-of-life. It aims Belgium, 3Ghent University Hospital, Oncology and people. While many concerns relating to end-of-life to examine how transitions to a palliative care approach Palliative Care, Gent, Belgium care are the same across all communities, there are also are managed and experienced in acute hospitals and to separate issues related to sexual orientation that need to identify best practice from the perspective of older Aim: The objective of this study was to compare the be addressed. The experiences and concerns of older patients and key service providers. quality of EOL decisions in an elderly population LGB people relating to palliative and end-of-life care Methods: A case study design using a mixed method admitted on a geriatric versus non-geriatric wards. have received scant attention in the research literature. approach wil be used in two contrasting acute NHS Methods: Following quality indicators of a hospital Aim: To conduct an exploratory study to investigate hospitals in England. Methods will include: EOL policy were used: dying at Intensive Care Unit the views and experiences of older LGB people living in (1) a census of palliative care needs amongst inpatients, (ICU) versus non-ICU and frequency and quality of Do- England relating to end of life care and the extent to collecting information from patients, medial and Not-Resuscitate (DNR) decisions. Data were collected in which they feel their needs are addressed by current nursing professionals working in primary and all older patients who deceased during a 12-week period palliative care provision. secondary care; in 2007 and a 16-week period in 2008 and who were Method: We carried out six focus groups with LGB (2) case note reviews; admitted at least 2 days on a non-ICU ward in their people who defined themselves as ‘older’ in the north (3) interviews and focus groups with key health and final hospitalisation (in whom it was possible to and south of England. 11 men and 4 women too part. 4 social care professionals and service commissioners; address EOL issues). were aged 55-64; 4 aged 65-74 and I aged 75-84. One (4) interviews with older people identified in the Results: 72 deceased patients were 75 years or older. person under the age of 45 participated. 4 declined to census as having palliative care needs on two occasions, The comorbidity did not differ between older people give their age. Several wrote up case studies of their own six months apart; dying on geriatric versus on non-geriatric wards (in experiences. Data was analysed using a framework (5) an economic evaluation measuring the proportion both groups: mean Charlson comorbidity score of 6, approach. of hospital patients with palliative care needs where p=0.486). Quality indicators of EOL policy are listed in Findings: Specific concerns and needs were reported admissions were termed ´inappropriate´ and that table 1. Patients admitted on geriatric wards were less in relation to end of life care linked to sexual episode of care could have been provided in a frequently referred to the ICU at the EOL. orientation. These include discrimination and care community setting. provision that is insensitive to the needs of LGB people. Results: The study will commence in January 2009. All deaths Patients dying on non-ICU These experiences mean that many older LGB people Whilst findings will not be available, the poster No DNR Patients dying without DNR form are reluctant to disclose their sexual orientation. presentation will provide a detailed account of the Dying ICU Dying Code 0 First Information Participation Traditional definitions of the family do not always on ICU stay last without (full decision patient / nurse proposed methodology and sample, together with an (p=0.048*) episode DNR therapy) to limit family (p=682) apply to LGB people who report that their ‘family’ are examination of the complex ethical and (mean form or 1 (no therapy (p=0.379) their partner or close friends. methodological challenges involved in examining the length (p=0.216) CPR only) within Conclusions: The ageing LGB population in England transition from ´active treatment´ aimed at cure or of stay (p=1) 48 h is a significant minority who have a range of chronic disease management to palliative care in the in days) before experiences and concerns about end of life care. This context of two acute hospitals, the care setting that (p=0.117) death exploratory study shows that it is possible to access the currently delivers end of life care for the majority of the (p=0.432) views of minority groups about end of life care. There is G-ward 4% 19% 16% 5% 5% 86% 60% population. (n=26) (2 days) a need to elicit these views to inform strategies for Non-G 22% 37% 6% 6% 0% 94% 66% developing appropriate and acceptable services for all. ward (3days) Funding: Burdett Trust for Nursing. PE 1.F360 (n=46)

Experiencing cancer in old age: A qualitative Conclusion: Despite similar Charlson Comorbidity PE 1.F364 systematic review score and subsequent long-term prognosis, patients, 75 years and older, dying in hospital were less frequently Better practice in palliative care for older people: Hughes N1, Closs S J1, Clark D2 admitted to the ICU when hospitalized on an acute A new WHO guide 1University of Leeds, School of Healthcare, Leeds, geriatric ward. United Kingdom, 2Lancaster University, International Hall S1, Costantini M2, Tsouros A3, Chattopadhyay S1, sessions Observatory on End of Life Care, Division of Health Kolliakou A1, Higginson I J1 Research, Lancaster, United Kingdom PE 1.F362 1King’s College London, Palliative Care, Policy &

(Friday) Rehabilitation, London, United Kingdom, 2National Aim: The aim of this study was to report and interpret ‘Partners in care’ - Progress of nursing home Cancer Research Institute, Regional Palliative Care 3

Poster the findings of qualitative studies which investigated palliative care LINK nurse scheme Network, Genoa, Italy, World Health Organisation, the experiences of older people living with cancer. Centre for Urban Health, Copenhagen, Denmark Methods: Systematic literature searches were Baldry C R1, Draper G2 conducted using: 1Terence Burgess Education Centre at Queenscourt, Background: Populations in European and other i) searches of electronic bibliographic databases, with a Southport, United Kingdom, 2West Lancs, Southport & developed countries are ageing, and more people are ‘filter’ to maximise the yield of qualitative studies; Formby Palliative Care Services, Southport, Merseyside, now living with the effects of serious chronic illnesses ii) hand searches of purposively selected journals; United Kingdom towards the end of life. Meeting their needs presents a iii) follow-up of references; public health challenge. Our earlier WHO guides iv) author and expert panel consultation. Papers were Background: The Palliative Care LINK Nurse Scheme explain why health services should provide good included if they were reports of qualitative research was launched in 2006 to improve partnership working quality palliative care for older people. This EAPC task investigating older peoples’ experiences of living with and meet the educational needs of the Care Home force, funded by the Maruzza Lefebvre D’Ovidio cancer and were written in English. industry, which is a major employer in the area. The Foundation, seeks to build on these to provide Findings from included studies were located, extracted area of 235,000 residents has a high elderly population examples of better palliative care practice, to aid those and analysed using a process of topic identification and 23% of ALL deaths (14% of cancer deaths: 24% of involved in planning and supporting care-orientated (grouping), abstraction (summarising) and non cancer deaths) take place in Care Homes. services in the most appropriate and effective way. interpretation. Scheme: To date 31 Nursing Homes belong to the Aim: To describe a new WHO guide which provides Results: Eleven studies were included. Four hundred scheme. Each of these homes nominates a LINK Nurse examples of better palliative care practice. and fourteen findings were located. Findings were from their staff group and a has a named Community Methods: A team of international contributors, with grouped into 19 topics which were summarised in 5 Palliative Care Nurse Specialist allocated to their home accepted knowledge and expertise in palliative care for core topics/themes: empowered patients; bodily signs as a resource and contact. older people are participating in planning and and symptoms; treatment; relationships; states of mind Audit & results: A audit of the effectiveness of the developing the guide. The new guide provides brief case and feeling induced by living with cancer. The LINK Nurse scheme was undertaken in 2007 and studies of good and promising practice along with interpreted findings suggest that to live with cancer in demonstrated increased confidence and reduced evidence of their effectiveness in the context of the old age is to live in a perpetual state of ambiguity. The anxiety relating to end of life care. In 2008 an audit of WHO health systems principles and framework. experience is characterised by a sense of disintegration, other staff in the LINK Homes showed the recognition Examples were sourced through systematic literature diminished identity, suffering and social retraction. At and impact of having a LINK Nurse within their home. reviews and an international call through international

116 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) organizations. They were independently evaluated by pain locations by physicians’ examination, and pain Vorarlberg conducted 12 trials in one Austrian state to three reviewers to determine which examples were intensity by MOBID-2 (Mobilization - Observation - test the implementation and development of such care most appropriate for the guide. Behaviour - Intensity - Dementia) Pain Scale, a novel in nursing homes.The proper care of the elderly is one Results: Although a wide range of examples were staff-administered pain tool in dementia. of the greatest challenges of the 21st century. Single considered for inclusion in the guide, many had not Results: Patients with severe dementia do not elderly women make up the highest percentage of the been rigorously evaluated and costs were rarely experience less pain intensity (P = 0.079), numbers of elderly population. Many residents in nursing homes reported. Examples focusing on specific symptoms such pain diagnoses (P = 0.172), and pain locations (P = suffer from terminal illness and progressive diseases as pain, advanced care planning, education and 0.202) compared to other stages of dementia. Severely and a high proportion suffer from dementia.The trials palliative care for older people being cared for in demented patients receiving opioids demonstrated have brought to light the importance of coordinating different settings such as care homes, larger regional or higher pain intensity (mean 4.4, SD 1.7) than non- all the different processes and training schemes within national initiatives and examples from developing demented (mean 2.9, SD 1.8), and received less pain the organisation. Nursing homes need external countries are included in the guide. treatment (P=0.018). Pain intensity did not differ expertise in hospice and palliative care not just for the Conclusions: The new guide will be widely between diagnostic groups of dementia (P = 0.439). care of the residents but at management level. disseminated. It will provide a resource for policy Patients with mixed dementia receiving opioids had Continuous training in palliative geriatrics should run makers to improve palliative and end of life care for more pain (mean 5.3, SD 1.5, range 4-7) than mentally alongside this, to ensure that training is kept up-to-date older people in Europe and beyond. healthy control and received less pain treatment (P < with new developments and remains sustainable into 0.005). the future.This internal coordination and expansion Conclusion: Patients with severe dementia and mixed will create a culture of palliative care within nursing PE 1.F365 dementia are at high risk to suffer by severe pain. More homes. And when such a system of care is realized, the research and quality improvement programs and a special needs of palliative care can be clearly identified. Providing end of life care in care homes for older multidisciplinary approach are needed to increase the The main topics for discussion are: holistic pain-relief, people: A qualitative study of the views of staff, knowledge in pain treatment by staff, which requires ethics, rituals, spiritual care and the subject of residents and their families competence in both pain assessment and dementia. dementia. Gender and intercultural matters are both important inter-related issues which also need to be Goddard C1, Stewart F1, Thompson G2, Higginson I J1, Hall addressed.Politically each federal state will be S1 PE 1.F367 responsible for all aspects of implementing such 1Kings College London, Palliative Care, Policy & hospice and palliative care in nursing homes, from Rehabilitation, London, United Kingdom, 2Manitoba Spiritual end-of-life care in Dutch nursing finance to contents and regulation. The result of this Palliative Care Research Unit, Winnipeg, Canada homes: A mixed method study coordination and cooperation between all the federal states will be a much greater understanding of the need In view of the growing number of people in Europe Gijsberts M-J H E1, van der Steen J T1, Echteld M2, Muller M for hospice and palliative care within nursing homes, dying in care homes for older people, it is important to T3, Deliens L4, Ribbe M W5 so that the elderly can enjoy a high quality of life to the explore views on providing end of life care (EoLC) in 1EMGO Institute, VU University Medical Center, end of their days and are allowed to die with dignity. this setting. The aim of this study was to explore the Nursing Home Medicine, Public and Occupational views of care home staff, community nurses, residents Health, Amsterdam, Netherlands, 2EMGO Institute, VU and their families on providing EoLC in care homes for University Medical Center, Public and Occupatinal PE 1.F369 older people. Health, Amsterdam, Netherlands, 3VU University Methods: Semi-structured qualitative interviews were Medical Center, Nursing Home Medicine, Amsterdam, Implementing ´end of life care tools´ into conducted with 33 managers, 29 care assistants, 28 Netherlands, 4EMGO Institute, VU University Medical nursing care homes: an integrated approach nurses, 16 residents and 15 family members. The Center, Public and Occupational Health, Amsterdam / framework method of qualitative analysis was used to End-of-Life Care Research Group, Vrije Universteit Hockley J1, Watson J2, Murray S3 explore and compare participants’ views. This Brussels, Brussels, Netherlands, 5EMGO Institute, VU 1St Christopher’s Hospice, Community/Care Homes, comprised five stages: familiarisation; identifying a University Medical Center, Nursing Home Medicine, London, United Kingdom, 2St Columba’s Hospice, thematic framework; indexing; charting; and mapping Amsterdam, Netherlands Edinburgh, United Kingdom, 3University of Edinburgh, & interpretation. School of Community Health Sciences, Edinburgh, Results: Five higher order themes emerged: In this study we map out spiritual end-of-life care in United Kingdom (i) initiation of EoLC; Dutch nursing homes. Although nursing home (ii) the meaning of EoLC; physicians are concerned with end-of-life care and bear As a result of the ‘end of life care strategy’ (DoH 2008) (iii) the significance of the care home environment; final responsibility for the care, it is unknown if and in the UK, different settings are being challenged to (iv) stressors at the end of life (eol); and how nursing home physicians map spiritual needs, how improve the quality of care in the last months of life of (v) improvements in EoLC. they provide spiritual care, how they deliberate with people dying from any disease. Care homes in While some viewed admission to the home as an other caregivers and when and to whom they refer to. particular are being targeted because of changing initiator of EoLC, others relied on a variety of triggers to It is also unknown if and how spiritual care is provided demographics with the emphasis to reduce recognise transition to the dying phase. Central to care to nursing home residents in different stages of inappropriate admission to hospital of frail older provision was a constant care & attention, focused on dementia and to their families. residents. Various tools are being advocated - the most providing optimal care to dying residents. Emphasis We aim at understanding if and how physicians provide appropriate for care homes being that of the Gold was placed on a tender loving style of care, where staff spiritual care to nursing home residents -including Standards Framework for Care Homes and an adapted engage more intensely with the dying. The care home residents with dementia- and their relatives. Liverpool Care Pathway for the Last Days of Life. environment was considered important in providing A mixed methods design is employed, using both This abstract reports the findings of a ‘realistic this care, and to facilitate a better eol experience. qualitative and quantitative research methods. evaluation’ study where the GSFCH and the LCP were Stressors which made it difficult for carers to cope with 1. A systematic literature review of content and introduced to 7 nursing care homes in one primary the eol, included attachment to residents, dealing with meaning of concepts of spiritual care. care trust. The implementation used ‘high’ facilitation families and staffing levels. Some felt the level of 2. A focus group study with Dutch nursing home because of the ‘weak’ context of nursing care homes. support for carers was inadequate. Staff acknowledged physicians to understand the concepts’ usefulness in One full-time facilitator worked alongside the homes. A improvements were needed, as carers lacked skills, practice for end-of-life care to residents and their mixed methods evaluation was undertaken: a experience and confidence when dealing with death families. retrospective review of the notes of 238 residents; and dying. 3. The results of the systematic review and focus group interviews with relatives whose family member had Conclusion: Despite a care focused attitude in homes, study will be used to develop a survey for a died in the care home both before and after the a number of barriers and challenges exist which may representative sample of Dutch nursing home implementation. The quantiative data will be limit the quality of EoLC. Training needs of staff and physicians, to quantify spiritual end-of-life care. The presented. sessions improved support networks are discussed. results will be linked to the spirituality of the nursing Results: There was an increase in DNAR notifications

The study is funded by Guy’s & St Thomas’ Charity. home physician. across all nursing care homes from 8% of notes the year (Friday) 4. In the ongoing ‘Dutch End of Life with Dementia prior to the study to 71% after the implementation.

Study’ associations will be assessed of characteristics of Anticipatory care planning documentation increased Poster PE 1.F366 nursing home, nursing home physician and residents from 4% to 55%. Inappropriate deaths in hospitals of with actually provided spiritual end-of-life care. frail old residents fell from 15% to 8%; with a reduction Relationship between different stages and 5. The review and the focus group study will provide of over 40% in inappropriate bed days in hospital in the diagnoses of dementia and the use of pain key concepts to frame observations in an ethnographic last 8 weeks of life. medication in nursing home patients study in Dutch nursing homes to study physicians’ Conclusions: End of life care tools will not in spiritual care. themselves change practice. The implementation of Husebo B S1, Strand L-I1, Moe-Nilssen R1, Husebo S B2, 6. All results will contribute to the development of these tools require ‘high facilitation’. Education based Aarsland D3, Ljunggren A E1 recommendations and guidelines for nursing home within the care homes - or a ‘hub’ of care homes 1University of Bergen, Public Health and Primary physicians to improve and provide high quality accessing the training together - plus, role-modelling Health Care, Bergen, Norway, 2Red Cross Nursing spiritual end-of-life care. anticipatory care planning was what helped to change Home, Bergen, Norway, 3University of Bergen, Clinical the culture to a more appropriate palliative care Medicine, Bergen, Norway approach. PE 1.F368 Aim: To explore the relationship between nursing home patients with different stages of dementia and Hospice and palliative care in Austria nursing PE 1.F370 different dementia diagnoses and use of pain homes medication according their pain intensity I a cross- End-of-life medical decisions in Acute Care for sectional study. Beyer S1, Peltarri-Stachl L1, Bitschnau K2 Elders Unit: A retrospective survey Method: 181 consecutive, long-term stay patients, 43 1Dachverband Hospiz Österreich, Vienna, Austria, primary caregivers, one geriatric study nurse, and 4 2Hospizbewegung Vorarlberg, Feldkrich, Austria Curiale V1, Custureri R1, Prete C1, Trasciatti S1 physicians of a Norwegian nursing home. Admission 1E.O. Ospedali Galliera, Struttura Complessa di records, prescription lists, care plans, Mini-Mental State Hospice Austria, the umbrella organisation of more Geriatria, Genova, Italy Examination, Statistical Manual of Mental Disorders than 200 hospice and palliative care organisations, is (DSM-IV), international classification of diseases (ICD- planning to introduce hospice and palliative care into Aim: Postpone death of dying patients may result in 10), cerebral computer tomography, pain diagnoses and nursing homes throughout Austria. Hospizbewegung futility and unacceptable suffering. As death

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 117 Poster sessions (Friday)

approaches some medical decisions aimed at giving PE 1.F372 PE 1.F374 comfort take into account the probability that the end of the patient’s life is hasten. Prognosis and dying Person-centered communication in palliative Raising the profile of palliative care: The poppy trajectories are less predictable in non-cancer sufferers geriatrics: A comparison of Basale Stimulation for medicine project in Afghanistan (age-related diseases, end-stage organ failure and and Validiation dementia) than in cancer ones and the former still have Reinert E1 poorer access to optimal care. This survey describes Heimerl K1, Wappelshammer E2, Weissenberger-Leduc M3, 1ICOS - International Council on Security and incidence and characteristics of end-of-life medical Kojer M3 Development (formerly known as The Senlis Council), decisions in Acute Care for Elders (ACE) Unit and their 1University Klagenfurt, IFF-Palliative Care and Paris, France associated factors. Organizational Ethics, Vienna, Austria, 2ZENTAS, St. Methods: 97 consecutive deaths over a 1-year period Pölten, Austria, 3Forum Praxis Palliative Geriatrie, The Poppy for Medicine (P4M) Project aims to raise the are reviewed. We record age, sex, length of hospital stay, Vienna, Austria political profile of morphine use for palliative care, by disease category (cancer/non cancer, severe dementia), exploring possibilities for increasing morphine supplies end-of-life medical decisions (withdraw of artificial Aims: The research aims at conducting a systematic for developing world markets, by producing morphine hydration and/or nutrition, greater alleviation of pain comparison between two methods of communication in Afghanistan. and/or symptoms near death, terminal sedation). with people with dementia - Validation and Basale The Poppy for Medicine technical dossier includes the Summary statistics and two-sample tests of proportion Stimulation. The two methods should be embedded technical specifications and the full economic model of are calculated. into scientific research. We want to support nursing the P4M system. The implications for palliative care Results: Mean age 86 years (range 72-103), females 56 staff and management to respect the subjective point of concerns and local economic development are drawn (58%), male 41, mean hospital stay 14 days (1-68), 22 view of old persons and to make a competent choice of from extensive sociological and criminological field patients (23%) stayed 3 days or less, 21 (22%) died from communication methods. The research team is research conducted in Afghanistan throughout 2005- cancer, 76 from non-cancer illnesses, 44 (45%) were committed to contributing to the well-being of 2007. The Poppy for Medicine research provides a severely demented. In 13 patients (13%) hydration was chronically ill, cognitively challenged old persons. blueprint for the establishment of pilot projects for the withdrawn, in 36 (37%) greater alleviation of pain Study design and methods: After the literature carefully licensed cultivation of poppy crops and the and/or symptoms was given near death, and 3 were research we performed interviews with the founder and production of morphine in Afghan farming terminally sedated. Decision to withdraw hydration was an expert for each of the two methods. Qualitative communities. weakly associated to cancer and dementia. Greater observation during lunch time and analysis of the The research proves that given the increasing global alleviation of pain and/or symptoms was strongly nursing documentation in a nursing home which is demand for essential poppy-based pain medicines such associated (p<0.05) to cancer and hospital stay longer familiar with the method has been performed for as morphine, Afghanistan is ideally positioned to than 3 days. Sedation was performed in 3 cancer Basale Stimulation and is already on the way for address the substantial gap in the international market patients. Validation. In both homes case studies of residents will for these medicines. Exported under special trade Conclusion: In ACE Unit greater alleviation of pain be generated with the two nursing teams and interviews frameworks from Afghan villages and used within the and/or symptoms near death had the highest incidence with the nursing directors are planned. The findings region and globally, Afghan morphine would help among the end-of-life decisions. People with cancer will be analyzed by the founders of the methods and address the global demand for essential pain medicines. and who stayed longer in hospital had more chance to consequently the results of the two methods will be According to the International Narcotics Control Board receive it. We can argue that a bias still exists against compared systematically. whose mandate is to ensure an adequate supply of non-cancer illnesses and palliative care is not yet Results: Intermediate results have yield to developing a morphine for medical and scientific purposes, 80 perceived to be an urgent care need. set of qualitative criteria, which helps to evaluate, percent of the world’s population, including whether the method has been implemented Afghanistan, face an acute shortage of essential sustainably in an institution. The first findings show, morphine medicines. PE 1.F371 that Basale Stimulation and validation both are based on the theories of person-centered care (Tom Kitwood) Substitute decision making for end-stage and are compatible with each other, but they are not PE 1.F376 dementia patients compatible with certain other nursing concepts or methods. They both are based on a humanistic attitude Financing palliative care in the Netherlands Jox R J1, Denke E1, Mendel R2, Hamann J2, Förstl H2, Borasio of staff, which needs to be trained and to be kept alive G D1 thoroughly. Management and its attitudes play an Jansen W J1 1University Hospital Munich, Interdisciplinary Center important role for successful implementation of the 1VU University Medical Center, Anesthesiology, for Palliative Medicine, Munich, Germany, 2Technical methods. There is first evidence, that each method has Amsterdam, Netherlands University Munich, Hospital for Psychiatry and its strengths in specific situations and that person Psychotherapy, Munich, Germany centered communication is best implemented in Palliative care was and still is a main issue in the Dutch nursing homes by using a mix of different methods. healthcare policy in the last decade. The relationships Aims: In geriatric palliative care, we face the problem between patients, insurance companies and care of patients having lost their decision-making capacity. providers, are described in the ‘three-market-model’. Advance directives are rarely present or sufficient to PE 1.F373 This model was used to describe all aspects regarding guide decisions. Therefore, substitute decision-making financing palliative care in the Netherlands. The by relatives or legal guardians is routine. Empiric studies Are our older patients getting a good deal ? ‘insurance-market’ (relation ‘patient- insurance have questioned the ability of those decision-makers to company’) shows that palliative care is not yet a well- represent the patient’s actual will. Hence the questions Hignell A1, Davie E2 defined insurable product. A major reason is the emerge: How do they make their decisions, which 1Macmillan Specialist Palliative Care Team, Frodsham, presence of three different types of insurances: The considerations are decisive, and do relatives and United Kingdom, 2Association of Specialist Palliative basic package described in the Healthcare Insurance guardians decide differently? Care Social Workers, Sheffield, United Kingdom Act. (HIA), supplementary packages offered by the Methods: We chose a qualitative study design, using healthcare insurance companies and the Extramural the Think Aloud Method which allows insights into Social work recognises discrimination and Medical Expenses Act (EMEA), a national insurance for cognitive processes. We addressed 15 relatives and 15 disadvantaged groups and works for change. Work exists uninsurable, long term care. From all thirty-nine non-relative guardians, experienced in deciding for that explores why older people have unequal access to healthcare insurance companies the policies for the dementia patients. They were given two hypothetical hospice and specialist palliative care services noting that basic and supplementary packages were examined for case vignettes and had to decide about (1) a feeding this group is the single largest group of health users. reimbursement of palliative care. Ten insurance tube placement and (b) a pacemaker operation in end- This study examines: companies offer no reimbursements regarding sessions stage dementia patients. During the task of decision • The complex differences in palliative care needs of palliative care. Twenty-nine insurance companies offer they had to verbalize all their thoughts. This was tape- older people reimbursement of hospicecare and/or homecare or

(Friday) recorded and analyzed according to protocol analysis. • Illnesses that carry stigma especially dementia supportive care for family caregivers. In the ‘financing- Results: A majority of participants decided rather • Attitudes towards older people, stereotyping and market’ (relation insurance company-care providers)

Poster instinctively just after having read the cases and discrimination the Dutch government developed several financial afterwards reflected on the reasons for their decision. • The concept of Social Death arrangements in the last decade to meet a number of Only a few pondered the pros and cons before coming • Older people’s position and value in western society bottlenecks. In this way the government presented to a decision. In both vignettes, the participants were • The issue of older people’s power to influence their themselves as an fourth party in the three-market- not concordant in their decisions although there was a own care and outcome. model. The government finances not only the tendency towards treatment limitation. The relatives Specialist palliative care social work with its psychosocial providers of palliative care, but also departments of more often objected to the proposed treatment, while brief recognises people’s worth in society and the palliative care in the eight Comprehensive Cancer the guardians were more often prepared to give their challenges they face. It has the skill to act as advocate, Centers, consultation teams and the seventy-one consent. The guardians gave more weight to the challenge ageism and enable older people to access their networks palliative care. In the third relation (care physicians’ recommendations and focused more on the rights. provider-patient) contributions patients have to pay to patient’s well-being. The relatives, on the other hand, In palliative care are older people with cancer and care providers are the main financial subjects in this were more heavily relying on the patients’ earlier dementia assessed and cared for in the same way as part of the model. statements and presumptive wishes. younger people with a terminal illness, noting that Conclusion: Substitute decision-makers have different symptoms of brain metastases may present in a similar decision-making strategies, focus on different factors way to dementia. and come to divergent results. Relatives tend to be more Institutional discrimination occurs where economic autonomy-oriented than guardians. planning for specialist palliative care impacts on the quality of end of life experiences for older people. Palliative Care Social Work should promote: • Equal access to palliative care • Social Worker presence in palliative care teams as recommended by NICE • Training and education. Palliative Care Social Work challenges prejudice and assumptions which threaten the wellbeing of older people.

118 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday)

PE 1.F377 Discussion: The availability of resources and regional self-development processes in palliative care professionals trained in palliative cares was a great must be fostered. European standards and norms for palliative advance in the monitoring and treatment of these Conclusion: Not one-sided political planning, but a care: Key areas, common definitions and patients in 1999. The implementation of the Strategy cooperative, communal shaping of cultural living and consensus on basic requirements means to encourage, an opportunity of improvement thus also dying spaces must be placed in the forefront. and a remarkable advance to guarantee the accessibility, Discourse about life and how to deal with the weakest Jünger S1, Payne S2, Radbruch L1 the equity and the palliative care development. members of society must be reflexively encouraged and 1RWTH Aachen University Hospital, Department of conducted as transdisciplinary processes of cultural Palliative Medicine, Aachen, Germany, 2Lancaster change on all levels of society. University, Institute for Health Research, Lancaster, PE 1.F380 United Kingdom How early is early? Implementing WHO PE 1.F382 Aims: Palliative Care in Europe is continuously guidelines for palliative care in lung cancer care undergoing professionalization, a process which is Improving the availability and accessibility of enhanced by the European Association for Palliative Gaertner J1, Wolf J2, Ostgathe C1, Glossmann J-P2, Hallek opioids in Serbia: An update Care (EAPC), and given shape by the various initiatives M2, Voltz R1 and research collaboratives consolidated within the 1University Hospital Cologne, Department of Palliative Bosnjak S M1, Ryan K M2, Ely J C3, Moen J P2, Maurer M A2 EAPC. However, no common definitions, values and Medicine, Cologne, Germany, 2University Hospital 1Institute for Oncology and Radiology of Serbia, models of service delivery have been defined in Europe Cologne, Department of Internal Medicine, Cologne, Belgrade, Serbia, 2Pain & Policy Studies Group, so far. The discussion is characterised by heterogeneous Germany Madison, United States, 3Hennepin County Medical meanings of terms, and the basic requirements for Center, Minneapolis, United States palliative care services until now have not been Introduction: The WHO recommends “early consistently defined. Therefore, the EAPC has put integration” (EI) of palliative care (PC) into cancer Background: Historically, consumption of morphine forward a remit for a White Paper on standards and therapy. However, guidelines for EI are lacking. Here, in Serbia has been one of the lowest in Europe, falling norms for palliative care in Europe. the implementation of a standard operating procedure well below the regional average. One of the causes of Methods: Recommendations from relevant (SOP) for EI of specialized PC into lung cancer (LC) care underuse of morphine is overly restrictive national international committees, ministries or organisations in a comprehensive cancer centre is presented. SOP: drug control policies that are barriers to opioid have been examined for indications regarding the The developing process of the SOP included availability. In 2006, a health professional from Serbia scope and the structure of the White Paper. Moreover, (a) the evaluation of a 2-year clinical pilot project and was awarded an International Pain Policy Fellowship reports and guidelines of international hospice and (b) prospective financial calculation and successful (IPPF) to learn how to evaluate national policy and palliative care organisations have been analysed in negotiation of PC structures with major sickness funds. work with government to remove regulatory barriers. order to identify relevant aspects which have to be Specialized PC is recommended regularly for all LC Aim: The aim of the IPPF is to improve patient care by considered. Where information was lacking, studies patient (pts) without curative treatment option, improving the availability and accessibility of opioids. and systematic reviews published in accredited journals specifically, locally advanced and metastasized LC Methods: The Fellow developed an Action Plan to in the field of palliative care have been drawn on. The either newly diagnosed or in relapse of the disease. address the following regulatory barriers: EAPC Atlas of Palliative Care provided essential details Integration of PC is recommended simultaneously with 1) Lack of availability of and access to oral opioids, on the status quo of palliative care delivery in Europe. start of tumour-specific therapy. This aims at 2) No recognition that opioid analgesics are absolutely Results: Five key areas of palliative care have emerged (I) improving symptom control necessary for the relief of pain and suffering and that it from the analysis of the resources: (II) optimizing home care, is government’s obligation to ensure their adequate (1) definition and terminology of palliative and hospice (III) best possible preparation of pt and relatives availability while preventing abuse and diversion, and care, regarding issues of a life-limiting disease and 3) Overly restrictive laws and regulations related to (2) common values and philosophy of palliative care, (IV) prevention pt´s perception of being left alone after opioid use. (3) levels of palliative care, failure of tumour-specific treatment. Results: Immediate Release oral morphine was (4) patient groups, and To offer cross-sectoral support, PC services consist of an officially registered for the first time in the country’s (5) systems and settings. inpatient unit, day clinic, hospital support team and history. A National Commission for Palliative Care was For each key area, clear and short statements have been specialized palliative home care team (PCT). established by the Ministry of Health (MoH) to which worked out and substantiated with background Discussion: Presenting an algorithm for the the Fellow was appointed as Vice-President. The information from the literature. A draft White Paper implementation of EI, this approach differs essentially Commission formulated the strategy recognizing: has been developed as scientific basis for a Europe-wide from traditional palliative LC care by 1) opioids as absolutely necessary for pain consensus building process. (a) defining “red flags” for EI of PC, relief/palliative care, Conclusions: The large interest and commitment (b) recommendation of PC parallel to initiation of anti- 2) the need for opioids control policy that balance towards the consensus building process undermines cancer therapy, concerns about abuse and the need for medical use, the appraisal that the time is ripe for a common (c) offering interdisciplinary and cross-sectoral 3) MoH responsibility to make opioids available to European approach to palliative care. structures for optimized in- and out-pt care and patients, and (d) clearly differentiating PC from supportive and 4) MoH willingness to examine drug control policies “palliative” therapies. for potential barriers. PE 1.F378 The Commission approved the proposal written by the Fellow for improving overly restrictive laws and Implementation of the palliative care national PE 1.F381 regulations related to opioid use. strategy in the Balearic Islands Conclusion: Working with experts and local partners Sustainable regional self-development in since 2006, the Fellow has made significant progress Verdaguer M1, Fuster J2, Castaño E2, Comendeiro M2, palliative care. Post modern health care policy towards overcoming barriers and improving the Ferragut E2, Vega Y2 strategies - Open process orientation, availability and accessibility of opioids in Serbia. 1Primary Care Department-Ibsalut, Team of participation and transdisciplinary networking Domiciliary Palliative Care, Mallorca, Spain, 2Regional Ministry of Health and Consume, Directorate-General Wegleitner K1 PE 1.F383 of Planning and Finances, Balearic Islands, Spain 1Palliative Care and Organizational Ethics / University Klagenfurt, Vienna, Austria Croatian declaration on palliative care, 2008 - Introduction: The Ministry of Health has promoted a The preliminary results Palliative Care National Strategy aiming to reach the Aim: The modern age has been greatly influenced by sessions whole population and to develop a palliative care in an the hope inspired by the Enlightenment and scientific Boban M1, Jusic A1, Bras M2 efficient and equity way. thinking of being able to shape the world, to make 1Croatian Association for Hospice/ PC, Zagreb, Croatia, (Friday) Target: The target is to develop The National Strategy plans and to get rid of uncertainties. But we human 2Institut for Psychological Medicine, KBC Zagreb,

in the Balearic Islands to strengthen activities, beings do not live and die in accordance with Zagreb, Croatia Poster guarantee accessibility, health care, equity and to preordained categories and process flows. Conventional promote training and specific research. health care policies with top-down strategies thus do The content of “declaration”: The “declaration” is Design and method: The multidisciplinary group has not correspond to complex, social realities. The based on concept of palliative care as a part of health been created to analyze the critical points and to qualitative study is devoted to the following research care and fundamental human right In Croatian promote the strategy. The objectives, target population question: How can palliative care be sustainably further government program for 2008-2011. there is a and activities have been defined, highlighting: developed in regional health care systems and how can parahraph that reads: “Palliative care and hospices are objectives launched for hospital services and primary regional differences be appropriately integrated? to be included in the health care system (network and health care, enlargement of the strategy to the final Methods: Two projects in Grisons (Switzerland) and referral centre), the deadline being December 2008“. stages of several chronic pathologies, medical record of Burgenland (Austria), whose goal was the development Palliative care is for the first time introduced into the the activity and the circuits among levels, of a regional palliative care concept, served as case RH state budget. computerization of a shared single medical history, studies. Data collection: multilevel and Members of the family and non medical volunteers, as elaboration of hospital training guides, training multiperspective in both health care systems (HCS). important factors in providing palliative care, must be workshops, educational sessions for primary health Sample: Interviews and group discussions with 30 recognized and supported by government policy. The care and promotion of grants for training and research. family carers. 11 interorganizational and Compulsory Health Insurance Act should ensure leave Results: Among the critical points it is highlighted the interprofessional analysis workshops with 200 care and remuneration for those providing care for a dying lack of patients referral among the services involved, professionals. Retrosp. analysis of 44 care processes in family member. not oncologist mainly, and little training in palliative the last six month of the patient’s life. 22 qualit. Methodology: The sample was determined by cares. Health care results will have to be evaluated in interviews with decision-makers in HCS. Data analysis: accessibility and it was non-random type.The printed the following years. Clinical guides to use opioids, qualitative discourse analysis, content analysis and a „declarations“ were submitted for subscription as death agony and mourning are already in use. The meta analysis of both project processes. associated signatory to different groups of potential open day has already launched with a good Results: The key challenge of palliative care is not subscribers by post and by physical contact and professional response. The computer development is simply the alteration and development of the kinds of displayed on Internet as well. Descriptive statistic was being implemented, and the first workshops and care offered. Social relationship patterns and solidarities applied. The diffusion of the text started five months educational sessions have begun with a wide must be strengthened and locally applied to the formal ago. The study is still in progress. participation. organizational structure of care provision. Organic, Results: The majority of 699 subscribers were active

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 119 Poster sessions (Friday)

physicians (16,6%), nurses (15,7%), retired pearsons of access to narcotic and psychotropic doctoral substances (conventional) wery different profiles (14,6%). Majority of subscribers among the palliative patients of Ukraine. • a tour by Nitschke promoting his book on suicide have academic level of education (40,3%). Seven Methods: Different methods we used: analysis of methods (extreme) leading politicians subscribed also. current Legislative Base; interviewing with doctors and • suicide of a 23 yr old man, quadriplegic after a rugby In homelad there were two group subscriptions (two patients (about 100 persons). accident, at Dignitas (wide press debate) societies as a whole) and one in-extenso publication in Results: We found more then 70 legislative obstacles • pro-euthanasia sponsored opinion polls to claim Pharmaceutical journal. Five leading personalities in of medical use of doctoral substances that contain rising support (conventional) world hospice and palliative care movement subscribed narcotic and psychotropic substances for palliative • labelling opponents to euthanasia as motivated by also. The text was published in-extenso in palliative patients. religion (conventional) care newsletter, Budapest. Conclusions: On the results of the research we • claims that ‘one third of doctors kill patients with After appearence of „declaration“ we noticed developed a Conception of legal circulation of narcotic morphine’ (extreme) significant increase of visits on web site, increased and psychotropic doctoral substances (NPDS) and its • claims that ceasing futile treatments is euthanasia number of interviews, better comunication with integration in general of the Governmental Policy of and needs regulating (extreme, but often made) leading politicians, and increased attendence on Ukraine. Then we created of the Recommendations on • claims that palliative care has developed Second congress of palliative care of Croatia, October necessary changes in legislation to improve of access to disproportionately in those countries that have 2008. narcotic and psychotropic doctoral substances among legalised assisted suicide/euthanasia (conventional). the palliative patients of Ukraine and to improve Media discussion about ‘choice in end of life care’ availability of NPDS for medical and scientific focuses on the mode of death, more than care choices PE 1.F384 purposes. to live well as death approaches. This promotes the view that death is the solution to a clinical problem, Early integration of palliative care into lung rather than more sophisticated and subtle palliative cancer therapy by the hospital support team PE 1.F386 approaches. Palliative care has been relatively poor at explaining its Gaertner J1, Ostgathe C1, Klein U1, Scheicht D1, Frechen S1, Developing palliative care: A top down approach role and beneficial outcomes in end of life care. Hallek M2, Wolf J2, Voltz R1 1University Hospital Cologne, Department of Palliative Mosoiu D1, Stempovschi E2, Rotaru M3, Gherman L4, Medicine, Cologne, Germany, 2University Hospital Capcelea A4 PE 1.F389 Cologne, Department of Internal Medicine I, Cologne, 1Hospice Casa Sperantei, Brasov, Romania, 2Hospice Germany Society for Palliative Care, Chisinau, Moldova, Planning and funding specialist palliative care 3Ministry of Health, Quality Assurance, Chisinau, in Wales Introduction: Early integration of palliative care (PC) Moldova, 4SOROS Foundation, Chisinau, Moldova into the care of patients with cancer is recommended Finlay I G1 by the WHO. In our comprehensive cancer centre, a PC Palliative care is usually developing as a grass root 1Cardiff University, Palliative Medicine, Cardiff, United hospital support team (PCST) is available on request. movement. Kingdom We report about experience with the impact of our Method: In Moldova under the pressure of the local PCST on the degree of acceptance of PC integration Soros Foundation palliative care was included in the Aim: Following a Palliative Care Strategy report, an into the care of patients with lung cancer. national strategy. Starting from an initial needs Implementation Board was tasked with planning and Methods: Retrospective chart analysis of all lung assessment Ministry of Health nominated a task force with distribution of £2 million to voluntary sector cancer patients seen by the PCST over a 28 month for palliative care in 2006 and as this proved not to hospices in Wales (population 2.95 million). period. produce expected results several work groups (2007) Method: In determining a Pan-Wales formula for Results: A total of 131 lung cancer patients were were appointed to analyze specific domains like: services, previous UK work on determining staff visited. The number of requested consultations concept paper on palliative care and regulations for numbers was consulted and individual services’ profiles increased steadily over the first year and remained palliative care services, guidelines and protocols, were reviewed. stable since then. As the understanding of PC structures legislative harmonisation, access to opioid medication, Distribution of resources was underpinned by the grew within our institution, PC advice for psychosocial education, standards, costing palliative care services. following set of principles of: fairness, transparency, issues such as planning of out-patient care was Results: Some groups were more active. Concept paper revisability, non-discriminatory (human rights increasingly requested. Moreover, the degree of was produced and approved by ministerial order, approach), clinically relevant / evidence based services, inquiries to discharge the patient to the PC ward protocols are well on their way, cost calculation was priority setting the future, avoid duplication, avoid decreased. The PCST was specifically asked to improve done starting from cost for general home care services, ‘boom and bust’, consult key groups, cost effectively symptom control (66%), to supply general information and access to opioid medication group is getting on manage resources. A difficulty encountered is that about PC (21%) and to clarify the indication for board relevant stakeholders. Undergraduate curriculum stakeholders with vested interests act as lobbyists and admission to the PC unit (8%). The interventions most for nurses (62hours) was produced and included in the are not always willing to look for mutually justifiable often performed by the PCST were: symptom control, training. The reduced number of service providers and decisions. clarification of social issues and admittance to the PC the challenges they face in keeping the service running Results: The recommendation was made that a ward. Of all consulted patients 25% died within 3 days prevents them playing always an active part in the specialist palliative care team should consist of a after the first visit. The degree of PC integration process and there is concern that final products of the medical consultant, specialist nurses, physiotherapist, measured as the number of requested working groups might not be fully applicable in occupational therapist, social worker and others consultations/lung cancer patient varied 4fold between practice. Partially this role of keeping policy documents including chaplaincy, pharmacy etc. Palliative care the departments primarily concerned with lung cancer in the reality of palliative care has been insured by the specialist staff numbers were recommended as follows: care. Romanian experts. In addition study visits to Hospice 1 WTE Consultant (supported by minimum one other Discussion: This study demonstrates that the degree of Casa Sperantei were made by relevant members of the doctor)per 300,000 population or 20 hospice beds or 40 acceptance and understanding concerning working groups. They all recognised the advantage of cancer centre beds or 850 DGH beds. competencies, values and infrastructure of PC increased having a model service and set that as a priority for the 1 WTE CNS (leads team of other nurses at more junior steadily. Yet, contradicting the recommendations of our country. grades) per 50,000 population or 7.5 hospice beds or 30 comprehensive cancer center, many patients were Conclusion: This top down approach is not unique. In cancer centre beds or 300 DGH beds. primarily seen shortly before their death and not early the region Ukraine and Georgia are going in a similar AHPs etc. numbers will need to be further calculated. in the disease trajectory. Therefore the authors consider direction. Further comparative studies would be Inpatient beds or notional hospice at home ´beds´ = 1/ the development of a more standardised approach for beneficial. 15,000 population. the implementation of early integration to be Funding reimburses core team costs and allows for the sessions reasonable. One measure could be the development of cost of inpatient/hospice at home beds, additional to standard operating procedures. PE 1.F388 the specialist team cost. These bed costs were estimated

(Friday) initially as being about £1200 / week / inpatient bed, Analysis of end of life choices as portrayed in the and pro rata 1/3 for hospice at home.

Poster PE 1.F385 media Conclusion: Education, 24/7 support, collaboration between services and increased home care are key Analysis of current legislative base in Ukraine on Finlay I G1 targets for the teams. finding legislative obstacles of medical use of 1Cardiff University, Palliative Medicine, Cardiff, United doctoral substances that contain narcotic and Kingdom psychotropic substances for palliative patients PE 1.F390 in 2004 a House of Lords Select Committee examined Gubskiy Y1, Bobrov O2, Serdiuk V3, Tsarenko A4, an Assisted Dying Bill and reported to Parliament. A On the use of meditative life-music to accompany Dashchenko A2 further Bill was introduced but defeated by 148 votes to palliative patients on the last part of their live 1Ministry of Health of Ukraine Institute for Palliative 100 at second reading. and Hospice Medicine, and All-Ukrainian Council for Recently a major media push in the UK has tried to try Aspernig A1 Patients Rights and Safety, Kiev, Ukraine, 2Ministry of to get acceptance of the concept of assisted suicide both 1General Hospital Klagenfurt, Klagenfurt, Austria Health of Ukraine Institute for Palliative and Hospice within and outside Parliament. To do this, proponents Medicine, Kiev, Ukraine, 3All-Ukrainian Association for have actively sought to promote messages about Aims: We try to give our patients the best possibilities Palliative Care, Kiev, Ukraine, 4Ministry of Health of palliative care and that assisted suicide is simply an to cope with a situation that causes a lot of fear at the Ukraine Institute for Palliative and Hospice Medicine, extension of choice in end-of-life care. Key last part of their live. So, we started to use meditative and All-Ukrainian Association for Palliative Care advocates have positioned the debate by a combination music and suggestive techniques as an additional tool. Training Centre, Kiev, Ukraine of extreme and conventional statements about ‘assisted Methods: A special meditative Life-music is offered to dying’ to create a false debate. They include, for the patients directly at the bedside. The therapist is Aim: Special importance and complexity of the issue of example: playing his instruments softly himself. It is a kind of forming governmental policy on drug circulation has • a call for the demented to consider seriously music, that is well known in sufi-traditions to cause a caused difficulties with the choice of the way of results requesting assisted suicide to avoid being a burden to therapeutic effect; mainly to reduce anxieties, giving a implementation. In order to provide society’s influence others (extreme) deep relaxation, reduction of pain and - psychologically on governmental policy in the sphere of narcotics • a court challenge to the Director of Public important - giving an emotion of acceptance of the circulation it is necessary to consolidate the efforts of Prosecutions for assurance of non prosecution for inescapable fact of the end of the material existence. Government, NGOs, doctors, experts to improve of ‘assistance with suicide’ prior to the event We combine music and suggestive techniques, with

120 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) imaginative psychotherapy, which is known as meaning-centered interventions, acceptance-enhancing PE 1.F395 „katathymic daydream“. approaches and value-based commitments. For Results: Some patients did not want music, as they had treatment integrity, the sessions are video-taped and led Communicating with people with intellectual bad experiences with it: It caused even more symptoms by several trained psychotherapists. disabilities (ID) about life-limiting illness: An of anxiety, as they learned to displace, to hide most of Objectives: exploration of breaking bad news and disclosure their feelings behind a normally inpenetrable shield of 1. Are there positive effects of the intervention on of diagnosis and prognosis protection, which music is able to go through anyway. quality of life and psychological symptoms? Those patients, who took part in our treatment, had an 2. Are these effects significant when compared to Tuffrey-Wijne I1, Bernal J2, Hollins S1 remarcable experience of reduction of fears, of different untreated controls? 1St George’s University of London, Division of Mental kinds of anxieties and could mostly better accept their Methods: The applicability and effectiveness of the Health, London, United Kingdom, 2Cornwall situation and the proceeding to the end of life. They group intervention are evaluated in a randomized Partnership NHS Trust, Medical Department, Redruth, reported about the feeling of security, of doubtlessness, controlled trial. The participants are relatives of United Kingdom of better acceptance of the inescapable: To die free of inpatients of two Palliative Care Units and a radio- anxiety and further psychological complications, oncology department. Self-report questionnaires Aims: To explore understanding and disclosure of helping them to accept and to go with the natural and include psychological symptoms (Brief Symtpom diagnosis and prognosis in people with ID who have mainly easy way. Inventory, BSI) and quality of life (Satisfaction With cancer. Conclusions: The use of meditative life-music can be Life Scale, SWLS). They are submitted at baseline, pre- Methods: A 3-year ethnographic study of the very effective to reduce different anxieties of our /post-treatment and a follow-up after 3 months. experiences of 13 people with ID who have cancer. palliative patients and can help them to cope, to accept Results: First results (n=27, 21 female, age: 54.0±15.5) most of whom were terminally ill. Data collection their inescapable situation in the stage before they show a decrease of psychological distress during the consisted mostly of participant observation (over 250 really go to their final destination. It is a precious intervention (BSI (pre) =0.93±0.43 vs. BSI (post) hours). possibility to give a gain in humanity, in quality of life =0.79±0.43) and increase of distress in controls (BSI Findings: 11 out of 13 participants were told they had until the last breath.It is a very useful way to (pre) =0.41±0.24 vs. BSI (post) =1.07±0.52). In the cancer, but only 2 understood the full implications. accompany them humanely on the last part of their intervention group, quality of life was constant in time Most participants were not helped to understand more path of life. (SWLS (pre)=4.32±1.68 vs. SWLS (post)=4.29±1.33) about cancer. Most doctors left explanations to families while it decreased in controls (SWLS (pre)=3.55±1.28 vs. and social care staff. How much people with ID SWLS (post)=2.48±0.46). understood about cancer and dying depended on PE 1.F391 Conclusion: First results show positive effects of the cognitive ability, life experience, normal processes of group intervention on psychological distress and denial, and how much they were told. How much Religiosity and existential thoughts during quality of life. However, these data have to be people with ID were told about cancer and dying severe illness - Questionnaire and pastoral care interpreted carefully because of the low number of depended on power imbalance between patients and participants. The study is still ongoing. doctors/families/social care staff, skills and confidence Ausker N1, Moerk L2 of doctors, attitudes of social care staff and relatives, 1Rigshospitalet/University of Copenhagen, and support for social cares staff and relatives. Copenhagen, Denmark, 2Rigshospitalet, Copenhagen, PE 1.F393 Conclusion: Disclosure of diagnosis and prognosis is a Denmark difficult issue that needs to be openly addressed when Involving people of diverse ethnicities in cancer someone with ID has cancer. Most people with ID were Method: 480 patient-handled questionnaires about research: An exploration of experiences, protected from bad news. There were hardly any belief and religiousity during severe illness and hospital attitudes and barriers attempts to involve people with ID in decision making. admittance compared to a hospital chaplain’s People with ID need more help in understanding their experience in her daily work. Okamoto I1, Wright D2, Gunaratnam Y3, Foster C1 diagnosis and treatment. Existing models of breaking Results: 1University of Southampton, Macmillan Research Unit, bad news are inadequate for people with ID. Questionnaire: The results from the Survey show that, School of Health Sciences, Southampton, United how religious the patients consider themselves to be Kingdom, 2Macmillan Cancer Support, London, United and how much they tend to think about existential Kingdom, 3Goldsmiths College, University of London, PE 1.F396 matters, is directly related to the degree of how ill they Department of Sociology, London, United Kingdom are. E.g. 58 percent of the severely ill patients state that ‘You tell us!’ - Making research accessible: The they often think about the meaning and purpose of Aim: Patients from Black and Minority Ethnic (BME) views and experiences of people with intellectual life, which only is true for 30 percent of the less ill groups are under-represented in cancer research, disabilities (ID) on palliative care provision patients. To the question addressing which factors have resulting in services and therapies that may be an influence on healing and recovery, the patients inappropriate or unable to meet their needs. This UK Tuffrey-Wijne I1, Hollins S1, Curfs L2 responded that family and friends, in addition to inner study aims to identify research experiences of cancer 1St George’s University of London, Division of Mental resources, are of great significance. God’s influence and patients from BME groups; barriers to their Health, London, United Kingdom, 2Gouverneur alternative treatment were relatively highly regarded. involvement in research; and experiences and strategies Kremers Centre, Maastricht, Netherlands But here too, the patients´ conception of God differs, as of research nurses seeking to involve BME groups. it turns out that far more of the severely ill patients Methods: Semi-structured and narrative interviews Aims: To demonstrate, through the use of a poster, consider God an ally and a comforter rather than a were conducted with 22 patients with various cancer how people with ID can be involved in research around miraculous healer. The latter is, however, a far more types (7 Chinese; 6 South Asian; 9 Black African/Black cancer, death and dying. common conception amongst the less ill patients. Caribbean) and 8 research nurses (all White British). 13 Methods: The poster is produced in accessible format, Pastoral care: The image of God that the Chaplain patient interviews were conducted in English and 9 in demonstrating how complex information can be meets is sometimes different from the one revealed in the patients’ preferred language. Interviews were presented in a way that is easy to understand for people the survey results; it can be a more negative image than transcribed verbatim (following translation into English with ID. The poster describes our research, which what people truly wish to believe in. When people are where appropriate) and analysed using thematic aimed to answer the following questions: in crisis it can be challenging to maintain a positive analysis. • What is it like for people with ID to have cancer? image of God. During these trying times, people can Results: Most participants indicated that they were • What is it like for people with ID to be very ill? feel that God is above this world and above caring for happy to take part in cancer research due principally to • What is important to people with ID who are dying? them, because why else would they feel this sick? An access to treatment, and altruism. Barriers to research The studies used the following methods: image of a punishing God is often what comes to mind participation indicated by the patients included • semi-structured interviews when a patient is searching for an explanation to and language, culture, poor understanding of research, • ethnography meaning behind their illness and suffering. tendency not to talk about cancer with their family and • nominal group technique sessions Nevertheless, the Chaplain experiences that a patient’s friends, and family involvement in decision-making • questionnaired. image of God can change depending on which stage of about research participation. Research nurses identified Results: People with ID took part in all our studies, as (Friday) the illness the patient is in. barriers to approaching patients such as their limited participants, advisors or co-researchers. The work was

Conclusion: There can be a difference in the patient’s cultural awareness, ineffective interpreter services, lack written up in a thesis, which included an accessible Poster perception of God depending on severeness and stage of translated study materials, and patients’ mistrust of summary, so that people with ID can understand the of illness. research. work we have done. Conclusion: Communication barriers between Conclusions: It is possible to listen to people with ID, patients and research nurses and between patients and even those who cannot speak. It is possible to include PE 1.F392 their family and friends were identified in involving them in research around death and dying. BME patients in cancer research. Recommendations Supportive group psychotherapy for relatives of include providing cultural awareness training for palliative care patients: A randomized-controlled nurses, more time for nurses to establish trust with PE 1.F397 prevention study patients and their families, more effective interpreter services, translated materials, more efficient advertising Meaning in life in patients with Amyotrophic Fegg M J1, Hauke G2, Brandstätter M1, Kögler M1, of research, and support for patients to share cancer Lateral Sclerosis (ALS) Rechenberg-Winter P1, Hentrich M3, Sehlen S1, Borasio G D1 experience with others. 1University of Munich, Munich, Germany, 2Coaching The study was funded by Macmillan Cancer Support. Kögler M1, Jox R1, Wasner M1, Haarmann-Doetkotte S1, Academy CIP, Munich, Germany, 3Hospital Munich Brandstätter M1, Borasio G D1, Fegg M J1 Harlaching, Munich, Germany 1Interdisciplinary Center for Palliative Medicine, Munich University Hospital, Munich, Germany Aim: Many studies found that relatives of palliative care patients suffer from intense psychological distress. Aim: Loss of meaning in life (MiL) is known to be one Psychotherapeutic interventions, however, have mainly of the main determinants of requests for hastened been developed for cancer patients and only few death. The Schedule for Meaning in Life Evaluation programs exist for their relatives. Based on newer (SMiLE) is a newly developed instrument for the developments in behavioural therapy (“third wave”), assessment of individual MiL. The objective of this we have developed a group intervention (8-10 study was to assess MiL in ALS patients and to compare participants) consisting of seven sessions (150 min the results with a representative sample of the German each). The manual includes mindfulness meditation, population.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 121 Poster sessions (Friday)

Methods: 49 ALS patients were interviewed at the PE 1.F399 depression was: Day 0: 8.2; Day 15: 7.5. For anxiety was: Munich University Hospital. In the SMiLE, respondents Day0: 5.3; Day15: 5.5. are asked to list 3-7 areas which are important for their Detection of information neeed on sanitary Values for depression and anxiety have been MiL before rating the current level of importance and personnel represented for the beginning day (Day0) and the day satisfaction of each area. A total SMiLE-Index (weighted after the intervention (Day15) distributed by group satisfaction, range 0-100) is calculated. All open answers Martin E1, Saiz Cáceres F1, Alonso M T1, Barrera A2, (control and intervention). are assigned to 13 categories found in the representative Valentín R1, Galea T1, Romero V3, Durán Á M1 Conclusions: Limitation: small size of sample. survey. The results were compared to those of a 1Hospital San Pedro de Alcántara, Palliative Care Team, In the vast majority of patients, interventions have representative sample (n=1,004). Cáceres, Spain, 2Hospital San Pedro de Alcántara, achieved improvement while the normal tendency Results: MiL was slightly lower in ALS-patients (SMiLE- Quality Deparment, Cáceres, Spain, 3Hospital San Pedro would be increase. Index=76.6±20.2) compared to the representative de Alcántara, Cáceres, Spain PCTs counting daily with a qualified psychologist to sample (83.3±14.8; p=.03; d=.4). The areas of MiL solve complex cases in terminally ill patients with mentioned most often were family (82%), partnership Introduction: From the professional perspective, it is anxiety and depression. The changes are the result of (61%), leisure activities (53%) and friends (39%). common to find different difficulties when the existence and effectiveness of the PCTs. Partnership and leisure activities were listed communicating bad news. In this aspect, the significantly more often by ALS patients compared to professionals’ lack seems clear and the need of training the representative sample, while work and health were on communication skills, thus broadening the sphere PE 1.F402 mentioned significantly less often (p<.001 for each). and not restricting the attention to only treating the Conclusion: Overall MiL (SMiLE-Index) was only physical symptoms but following the biopsychosocial What does a palliative patient feel during slightly lower in ALS-patients compared to the model, and as a consequence, preserving the patients’ bedside sonography? representative sample. Health and work were less autonomy principle. important for MiL, while relations to significant others Aim: To show the difficulty on communication of bad Hackspiel S1, Mathis G2, Gehmacher O1 - especially partnership - and leisure time were listed news, respecting the principle of patient autonomy and 1LKH Hohenems, Hohenems, Austria, 2Praxis, Rankweil, more often. This could be due to a “response shift“ in taking into account firstly patients’ needs and secondly Austria the progress of the disease, i.e. a change of internal their relatives’ needs. standards as a reflection of coping strategies. Method: The study is based on a descriptive study Aims: Palliative care patients with limited life Identifying ALS patients who are at risk of losing their based on a questionnaire conducted to health expectancy, who suffer from pain and other symptoms, MiL and helping them to find alternative sources of professionals from 10 specialties in the Hospital San require a conservative but nevertheless thorough MiL may be an important step towards preventing Pedro Alcántara of Cáceres. physical examination. Goal of this study was to requests for hastened death. Results: The total number of doctors asked was 91, question palliative care patients regarding bedside they came from 10 specialties. 47% considered that sonography and to place their subjective views of this they knew how to communicate bad news in an procedure in the foreground. PE 1.F398 efficient way and only 12% declared to have received Methods: 20 patients participated in a comprehensive training on communication techniques and skills. 36% 16-question interview. The interviews were recorded Cancer patients and distribution of information would like to receive a bad new accompanied by their and later analyzed and answers categorized. regarding the diagnose families. 50% would like to have all the information Results: None of the patients were afraid of and decide themselves to receive or not a treatment and ultrasound. Nonetheless 9 patients (45%) stated that Abesadze I G1, Shavdia M D1, Ghvamichava R R1, Shavdia 44% would like to have a second opinion to get peace of they were afraid of the results from the examination. N M2, Abesadze G I3 mind. Most feared a worsening of their illness.15 patients 1Cancer Prevention Center, Palliative Care, Tbilisi, Conclusions: The results show the professionals’ lack (75%) felt well informed after the examination.The Georgia, 2Medical School ‘AIETI’, Medicine, Tbilisi, of communication skills and, as a consequence, the patients appreciated the visual findings of their illness Georgia, 3University ‘ESM-Tbilisi’, Buisness lack of efficiency when communicating bad news. as well as the opportunity to discuss results and fears Administration, Tbilisi, Georgia It is important to stress the professionals’ wish of being during the examination. The majority of the patients informed accompanied by any relative, of decide preferred bedside sonography to other imaging based Information distribution level in cancer patients themselves to receive or not a treatment and of looking examinations that often require strenuous regarding their diagnoses and prognosis is very low in for a second opinion. Finally, this descriptive study transportation and positioning. 13 patients (65%) Georgia. requires the widening and specification of its contents thought it wise if the same physician provided the Research aim: Determination of the frequency of in a more exhaustive study on the lacks and needs examination and treatments. The main reason for this information distribution in cancer incurable patients when communicating bad news in our working was that a relationship and trust was already developed. regarding the true diagnose and prognosis. environment, respecting the principle of patient All patients were convinced that the performed Methodology: Research was based on contracts (539) autonomy. ultrasonic testings were important and the opportunity signed between Palliative Care Unit, patients and their for bedside ultrasound in palliative care was much families in 2006-2007. The families were entitled to get appreciated. 3 patients (15%) stated that they decision on distribution of information. The level of PE 1.F400 experienced uncomfortable side effects. Those information distribution in 193 patients hospitalized in pertained to pain from the pressure of the transducer, 2006 was as follows: 16 /8,3% knew the diagnose, 27 Effectiveness of psychological intervention in shortness of breath lying down, and the discomfort /14% wanted to know, 150 /77.7% refused to know. The terminally ill patients with anxiety or depression from the sticky gel. 5 patients (25%) were afraid that same data in 346 patients hospitalized in 2007 on palliative care. Preliminary results the physician would see less with the portable unit accordingly was: 19 /5.5%; 110 /31.8%; 217 /62.7%. The than with a high end unit. analysis shows that the number of families willing to Gámez D1, Cabo R2, Encinas P3, González P4, Martín E5, Conclusion: Acceptance of bedside ultrasound ranked inform the patients on diagnoses, has doubled but it Reyes M6 very high among patients. It is a modern imaging didn’t affect the quality of information distribution. 1Regional Palliative Care Programme of Extremadura, technique that facilitates communication between Data on Willingness of Information Distribution Plasencia/Coria, Spain, 2Regional Palliative Care patient and physician and accommodates especially Among 346 Patients Hospitalized In 2007 According Programme of Extremadura, Badajoz, Spain, 3Regional very ill and immobile patients. the Ages: Palliative Care Programme of Extremadura, Llerena- Zafra, Spain, 4Regional Palliative Care Programme of Under 30 30-39 40-49 50-64 65 and more Total Extremadura, Don Benito-Villanueva/ Mérida, Spain, PE 1.F403 5 Yes 3/0.9 10/2.9 28/8.1 48/13.9 35/10.1 124/35.8% Regional Palliative Care Programme of Extremadura, Cáceres, Spain, 6Regional Palliative Care Programme of The art of questioning - Communication with sessions No 10/2.9 12/3.5 37/10.6 94/27.2 69/19.9 222/64.2% Extremadura, Navalmoral de la Mata, Spain seriously ill patients Both 13/3.8 22/6.4 65/18.7 142/41.1 104/30.0 346/100.0% (Friday) Terminally ill patients frequently have psychological Retschitzegger H1 challenges and often they experience emotional 1Hospital of the Sisters of Mercy, Palliative Care Unit,

Poster The table gives the number of patients willing to be disorders. Ried/Innkreis, Austria informed: under 30 - 23%; between 30-50 - 45%; over Aims: To assess the effectiveness of some psychological 50 - 33.7%. Analysis shows relatively high percentage of interventions in terminally ill patients with anxiety Aim: To find out if patients in our palliative care unit the will to be fully informed between 30-50 years, when and/or depression. are asked too many questions in light of their situation. socially activity is the highest and a person is able to Method: Simple blinded, controlled, clinical survey. Due to our interdisciplinary teamwork, there are many make proper decisions. However, no one of these Patients, divided into two groups (intervention /control persons involved in talking to patients, caring for patients was informed on prognosis of the disease group), were assessed at the beginning (day0) and at the patients - asking patients many different questions, like because of refusal of their families. end (day15) on socialdemographic and clinical data. In “How do you feel today?”, “Do you need something Conclusion: the intervention group the psychological interventions now?”, “Did the analgesics help?”, and so on. The 1. High level of stigma on cancer diseases in Georgia is have been performed for a maximum of 14 working reason for the study - reflected in my hypothesis at its caused by lack of awareness. days, using specific psychotherapeutic techniques. beginning - was that maybe we ask too many questions. 2. Public demand on information distribution passes Inclusion criteria: All patients in PCTs (2006-2008) with I wanted to investigate: Do we ask too many questions? ahead of information distribution that is greatly caused anxiety and depression (DSM IV diagnostic). Informed Do we ask too few? Do we ask the most pertinent by lack of training in medical personnel. consent. questions? Are there too many questions during the 3. The age level of patient’s will to be fully informed is Analysis: Average decrease on Visual Analogic Scale assessment procedure upon admission to the palliative between 30-50. (VAS) value for depression and anxiety. care unit? Results: 34 patients were register. 11(29.72%) were Methods: Physically and mentally capable patients randomly assigned to received intervention or not in 14 were willing to fill in a questionnaire with seven days, 8(34.78%) had disease progression, 9(39.13%) questions regarding the amount of questions, the without inclusion criteria, 6(26.08%) were lost cases. quality of questions, the duration of the assessment For total patients (n=11): median score for depression procedure, and whether there were any questions was: Day0, VAS score: 7.91, Day15: 6.91; For anxiety was: which patients would like to be asked. Day 0: 5, Day 15: 4.5. In control group (n=5): median Results: Over a short time span, 6 patients of our score for depression was: Day0: 7.6; Day15: 6.2. For palliative care unit completed the questionnaire. The anxiety was: Day0: 4.6; Day15: 3.4. amount of patients is very small. As a first glimpse, In intervention group (n=6): median score for however, it was helpful. The patients felt that the

122 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) questions were neither too many nor too few. The Anxiety and Depression Scale. We searched for the ideal interdependent. quality and the amount of questions were also suitable cutoff point for depression and anxiety in the ESAS. 3. According to the data collected, variables based on in most cases. Results: Significantly more physical symptoms, also the subjective perception of the person (e.g. satisfaction Conclusion: Only a few patients were able to fill in the perceived by the patients with more intensity, were with social relations) are better suited for the questionnaire during the period of the small study. observed in anxious or depressed patients. A cut off operationalisation of social resources than variables Despite the modest number, it was interesting to find point of 2 out of 10 in the ESAS gave sensitivity and a that are based on objectives measures (e.g. size of social that the amount of questions suits the needs of the negative predictive value greater than 86%. network). patients. The duration of the assessment procedure is Conclusions: The ESAS was found to be a useful tool 4. Factor analysis of social resource parameters indicates also declared as “acceptable”. Questioning is a key for the screening of depression and anxiety in patients five dimensions which constitute risk and protective aspect of communicating with patients - that is why I with ACD (cut off point of 2 out of 10). We also found a factors: have chosen the title “Art of questioning” deliberately. close association between intensity and frequency of (a) outer relatedness, Of course there are more studies needed regarding physical symptoms and depression or anxiety in these (b) inner connectedness, questioning. From my point of view, it is an interesting patients. (c) disturbance of the social network, field which should be explored further in a deeper way. This study was partially supported by a grant from the (d) network’s sensitivity for change, and IAHPC. (e) need for support. 5. Inner connectedness appears to be a new concept in PE 1.F404 social resources and has strong influence on strain and PE 1.F406 well-being in the pc setting. The influence of gender and stage of disease on Conclusion: These results and the theoretical analysis patients’ views of cancer support groups Coping with advanced cancer: An analysis of constitute the integrative model “Risk and Protective coping processes used by patients with advanced Factors in the Social Space”, which may serve as a basis Grande G E1 cancer in a hospice setting for further research. 1University of Manchester, School of Nursing, Midwifery & Social Work, Manchester, United Kingdom Hannon B L1, Fitzgerald P2, Hayes D1, Murphy M1, O’Brien T1 PE 1.F408 Aims: There is strong evidence that support groups can 1Marymount Hospice, Department of Palliative benefit cancer patients. However, what patients need Medicine, Cork, Ireland, 2Cork University Hospital, Exploring the intangible: Sexuality and from groups is likely to differ with their psychological, Department of Psychiatry, Cork, Ireland quantitative research demographic and disease characteristics. This paper considers how gender and stage of disease may Aim: To investigate coping strategies used by patients Gleeson A B1, O’Siorain L2 influence patients’ perception of benefits and with advanced cancer in a hospice setting, and analyze 1Our Lady’s Hospice, Education and Research Centre, disadvantages of support groups. the relationship between these strategies and Dublin, Ireland, 2Our Lady’s Hospice, Dublin, Ireland Methods: Patients with lung (14), colorectal (17), psychological distress. bladder (3) or breast cancer (18) were purposively A secondary aim is to identify if certain socio- Sexuality is increasingly recognised as an important sampled from support groups and oncology outpatient demographic vatiables are associated with different issue in health care. Despite this little is known about clinics (total n=52). Of these 28 were support group coping strategies. sexuality in palliative care. members, 18 were men, and the cancer of 25 could be Methods: Completion of 3 self-report questionnaires Aim: We undertook a questionnaire study to determine classified as non-curable. Semi-structured interviews as outlined below: the importance of sexuality to Irish palliative care exploring patients’ views of support groups were (a) the Ways of Coping Questionnaire (valid and patients. conducted, transcribed and subjected to thematic reliable instrument for assessing coping processes in Methods: The questionnaire was developed using framework analysis. patients with cancer). This questionnaire identifies 8 themes from a focus group study with health Results: Among the findings are that patients’ views of different coping styles as follows: professionals, which explored their experience in groups, irrespective of gender and stage, encompassed (i) confrontive coping dealing with the sexual concerns of palliative care the same dimensions of groups as providers of (ii) distancing patients. It was then piloted with a group of hospice information, a cancer “community” and an (iii) self-controlling, inpatients. The final questionnaire was sent to home opportunity for comparison with others. Men (iv) seeking social support care and day hospice patients. The questionnaire was predominantly focused on groups as a source of (v) accepting responsibility designed to produce predominantly quantitative data to information, women were more likely to consider all (vi) escape-avoidance identify if concerns relating to sexuality were important dimensions. For patients with non-curable cancer, (vii) planful problem solving to Irish palliative care patients. positive views of groups were more likely to be (viii) positive reappraisal Results: The overall response rate was 13.5%. Only one tempered by an awareness of the potential exposure to (ii) the Hospital Anxiety and Depression Scale respondent had previously been asked about their deaths, deterioration or negative information from (validated and reliable questionnaire for assessing sexuality by a health professional, while 36% felt that other patients within the groups. Only those whose psychologic distress in patients with general medical they did not wish to discuss sexuality with health cancer could be classed as curable noted that groups conditions) professionals. may carry a risk of being trapped in a cancer (iii) A brief measure of quality of life (the 15 item Discussion: There are many possible reasons for the “community” and failing to “move on”. EORTC-QLQ-C15-PAL). This is specifically validated for low response rate. These include: the sensitive nature of Conclusions: This study suggests a need to tailor the palliative care population. the subject matter; cultural/religious influence; gate- groups differently to men and women. It also Results: This study is currently continuing to recruit keeping; and an absence of a relationship with the highlights the considerable challenge in groups for participants, therefore full reults are unavailable. principal investigator. The results of this study raise the patients with non-curable cancer of providing the Identification of particular coping strategies in this issue of the limitations of quantitative research in positive benefits of mutual support, information and patient population may allow for more targetted exploring “qualitative” issues. positive role models, while negotiating the reality of psycho-social interventions aimed at vulnerable patient Conclusion: While sexuality is an important issue for death and disease progression of many members. subgroups. all, care must be taken in broaching the sexual concerns of palliative care patients. The importance of building relationships and recognising the need to take PE 1.F405 PE 1.F407 a “case by case” approach when dealing with patients’ sexuality concerns must be highlighted. As sexuality Is significant psychological distress related to Social resources in facing death and dying means different things to different people it may best physical symptoms? A prospective study of be explored using qualitative methods. Further research patients with advanced chronic diseases Geiss G1, Simon S2, Krischke N1, Belschner W1 is necessary to identify the needs of Irish palliative care sessions 1Institute of Psychology, Carl-von-Ossietzky University patients in relation to addressing their sexual concerns. del Río I1, Palma M A1, Bonati P1, Nervi F1, Villaroel L1, of Oldenburg, Department of Health and Clinical This study was not funded, but was undertaken as part (Friday) Tupper L1 Psychology, Oldenburg, Germany, 2Institute of of an MSc degree, through Cardiff University. 1

Pontificia Universidad Catolica de Chile, Santiago, Palliative Care (IPAC), Oldenburg, Germany Poster Chile Background: Using resources is an integral part of PE 1.F409 Introduction: To achieve optimal results in the successful coping with crises in life, such as imminent symptomatic relief of advanced chronic diseases (ACD), death or possible loss of a loved one. In thanatological Taboo or not taboo: The changing face of it is necessary to have good comprehension of the and palliative care (pc) research, resources and their sexuality in palliative care relation between different aspects of the patient and his way of operation has not attracted much attention so family. It is commonly assumed that the presence of far. Gleeson A B1, O’Siorain L2, Connaire K3 depressive, or anxious symptoms may play a role in the Objective: Are social resources significant and effective 1Our Lady’s Hospice, Education and Research Centre, intensity and permanence of some physical symptoms in the confrontation with death and dying? And how Dublin, Ireland, 2Our Lady’s Hospice, Dublin, Ireland, and vice versa. However, this assumption has not been can their mode of operation be described? 3St. Francis Hospice, Dublin, Ireland clearly sustained by supporting data. Methods: Quantitative survey of 781 palliative Aim: This study had two purposes. First, we evaluated patients, family members, and caring professionals in Sexuality is increasingly recognised as an important whether depression and, or anxiety were related to different pc settings. Data contains 16 parameters of issue in health care. The WHO recognizes the right of physical symptoms in hospitalized patients with ACD. social resources that are examined in relation to each all people “to the highest attainable standard of health Secondly, we assessed the screening performance of the other, to personal resources, and to outcome variables in relation to sexuality”, yet little is known about the Edmonton System Assessment Method (ESAS) for such as well-being, strain, and demand. Analysis was needs of palliative care patients in relation to sexuality. depression and anxiety, compared to the Hospital performed with non- and parametric methods, using Aims: The aims of this study were threefold. Firstly, to Anxiety and Depression Scale (HADS), in the same SPSS 15.0. explore the perceptions of health professionals patient population. Results: regarding the importance of sexuality to Irish palliative Methods: Data were collected from 119 hospitalized 1. Social resources prove to be helpful by stabilizing care patients. Secondly, to use the themes generated to patients with ACD without delirium. We compared the well-being. develop a postal questionnaire for patients, and thirdly symptom profiles (intensity and frequency measured 2. The dichotomy of classification in social and to identify whether concerns relating to sexuality were by the ESAS) of depressed (N: 16), non depressed (N: personal resources cannot be upheld, because the inter- important to Irish palliative care patients. 102), anxious (N: 38) or non anxious (N: 80) patients personal space (outer events) and the intra-personal Methods: A combination of qualitative and classified in those labels according to the Hospital space (inner experience) show to be interrelated and quantitative methods was used. A focus group study

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 123 Poster sessions (Friday)

with health professionals working in palliative care was evaluated 140 terminal patients with advanced cancer The data collection was carried out through dialogs undertaken in order to explore their perceptions in (male: 82, female: 58; mean age: 71.6, range: 40-93). with them, a total of fifteen dialogs. The data analysis relation to the importance of sexuality to Irish palliative Regarding consciousness, 55.7% of the patients are was thematic. care patients. The interviews were analysed using a vigilant, 26.4% conscious 17.9% confused or Results: The study revealed that fatal illness had deep method of thematic content analysis. Themes were unconscious. Interactive abilities are spontaneous in effects on the participants, who used a variety of used to develop a postal questionnaire which was sent 65% of evaluated patients, mediated by the family in resources to make their lives easier. Increased symptoms to home care and day hospice patients. 10%, following stimulation in 17.9%, absent in 7.1%. reminded them of the gravity of the disease and Results: Three principal themes emerged from the Communication is truthful in 36.4% of the patients; provoked existential crisis. A positive frame of mind and focus group interviews. These were: the impact of loss only 17.1% are aware about diagnosis and 3.6% about the feeling of having a role, had a positive influence on and change on sexuality, the diversity of sexuality, and prognosis. Anxiety was individuated in 25.7% and quality of life. An important factor was whether they coming out of the dark - shedding light on sexual depression in 32.9% of the patients. received adequate social services; most of them felt that issues. The response rate to the questionnaire was Conclusion: The evaluation of psycho-social pursuing their rights was too complicated. The 13.5%. Only one patient had previously been asked condition of terminal patients with cancer at the participants’ need for ‘human contact’ with health care about their sexuality, while 36% felt that they did not moment of hospital discharge indicate a state of intense personnel was clear. A model presenting the essential wish to discuss sexuality with health professionals. vulnerability; the most critical factors seem to be structure of living with fatal disease and influences on Conclusion: Further education and training would be diagnosis and prognosis awareness and communication perceived quality of life, arose from the findings, as well welcomed by health professionals in relation to between patient, health professionals and family. The as a model of the ‘struggle’ of trying to cope when supporting patients with sexual concerns. While PCU is activated at the final phase of a disease process facing impending death. sexuality is recognised as an important issue for marked by particular communication styles regarding Conclusion: Despite their physical burden and a life patients, further research is needed to identify the cancer and prognosis. Palliative care professionals have ‘consisting of getting bad news,’ the participants’ needs of Irish palliative care patients in relation to to face mistakes and lacks of this process. These profound need for going on with as meaningful a life as sexuality. observations and the understanding of patient’s possible, and in society with others, was clear, and is This study was not funded, but was undertaken as part emotional suffering imply several bioethical and reflected in the study´s overriding theme: ‘Remember of an MSc degree, through Cardiff University, Wales. psychological considerations in order to implement that I am still alive.’ structured and personalized palliative programs. Main funding: Icelandic Center for Research.

PE 1.F410 PE 1.F412 PE 1.F414 Health professionals’ perceptions of the importance of sexuality to Irish palliative care Influence of personalized treatment plan on Patients’ fears about cancer disease patients quality of life and psychiatric comorbidity (anxiety, depression) at patients with advanced Díaz-Benito J1 Gleeson A B1, O’Siorain L2, Connaire K3 colon cancer requiring palliative care 1Servicio Navarro de Salud, Atención Primaria, 1Our Lady’s Hospice, Education and Research Centre, Pamplona, Spain Dublin, Ireland, 2Our Lady’s Hospice, Dublin, Ireland, Popa-Velea O1, Cernat B2, Tambu A2 3St. Francis Hospice, Dublin, Ireland 1University of Medicine and Pharmacy ‘Carol Davila’, Aims: Cancer brings fears, concerns and uncertainty Medical Psychology, Bucharest, Romania, 2University of about future. Communication with patients about life- Sexuality is an important aspect of life which is Medicine and Pharmacy ‘Carol Davila’, Bucharest, threatening illness is a real problem. Concerned doctors increasingly recognised as an important issue in the Romania will continue to talk to patients in understandable health care setting. Despite this little is known about language, but more research is needed about sexuality in palliative care. The aim of this study was to Aim: Personalized medical care has been consistently techniques to overcome patients´ fears. The aim of this explore the perceptions of health professionals proven in literature as contributing to a better study was to investigate the types of fear shown by regarding the importance of sexuality to Irish palliative adherence and quality of life for patients suffering from primary care patients if they were suffering from care patients. chronic conditions. However, limited research has cancer. Methods: Three focus group interviews were investigated the role of personalized approach in Methods: undertaken, attended by a total of 20 health ameliorating these parameters at patients with Design: cross-sectional study. professionals (8, 7, and 5 respectively). Health advanced incurable diseases. The scope of this paper Setting: primary health care. professionals who participated included nurses, was to investigate the possible impact of personalized Intervention: an anonymous self-administered doctors, physiotherapists, and social workers. The care to 40 patients with advanced colon cancer questionnaire was administered to 253 primary care interviews were recorded and analysed using Burnard’s requiring palliative care. patients selected by consecutive sampling. method of thematic content analysis. Method: 40 patients (32 M, 28 F) (mean age 64,6) with Results: Mean age was 51 years (SD 18). Sixty-four per Results: Data saturation was achieved. Three principal advanced colon cancer requiring palliative care were cent were woman. Thirty-seven per cent of the patients themes emerged from the data, which were: the impact randomly assigned to a standard or to a personalized had a univertity degree. Conversations with patients of loss and change on sexuality, the diversity of care condition, the latest implying regular (at least 2 and their replies to this survey revealed that, apart from sexuality, and coming out of the dark - shedding light monthly) meetings with the doctor, possibility to share having several fears, the following four types of fears on sexual issues. Participants highlighted a number of treatment decisions, information about the prognosis impacted especially: fear of pain (43.7%), fear of issues such as: the need for education and training to and discussions with family members about their disability (20.6%), fear of death (19.4%) and fear of aid health professionals in dealing with patients’ sexual problems and needs. The design of the study was solitude (10.7%). There were no significant differences concerns, the importance of rapport building in order prospective and consisted of two successive evaluations by gender. to broach sexual issues, and the inhibiting effect of of quality of life (SF-36 questionnaire) and anxiety and Conclusions: Pain is the number one fear in primary culture and religion on openness in relation to depression (HAD test). care patients about cancer disease. The results suggest sexuality and discussing sexual concerns. Results: Patients pertaining to the personalized that doctors need to pay more attention to the Conclusion: Sexuality is recognised as an important treatment approach had both superior quality of life assessment of individual patients´ fears and to avoid issue for Irish palliative care patients by health scores (p < 0,05) and lower anxiety (p < 0,01) and stereotypical views of patient fears. professionals. Further education and training in depression (p < 0,05) than the control group. More relation to supporting patients with sexual concerns detailed analysis showed significant differences of would be welcomed by health professionals. vitality and social functioning for subjects pertaining to PE 1.F415 the study group (p < 0,05), as well as a lower ratio between latent and manifest anxiety (p < 0,01). Referral patterns and psychosocial needs of sessions PE 1.F411 Conclusion: These results argue in favor of the advanced cancer patients in an outpatient benefits of a personalized treatment approach for psycho-oncology counselling program

(Friday) Psycho-social assessment of terminal cancer patients with advanced incurable diseases. patients at the activation of palliative care unit Nekolaichuk C L1, Cumming C1, Turner J1, Yushchyshyn A1, 1

Poster Sela R Serpentini S1, Alducci E2, Dal Sasso L1, Busa F1, Beltramello PE 1.F413 1University of Alberta, Department of Oncology, C3 Edmonton, Canada 1Azienda Sanitaria ULSS N.3 Bassano del Grappa, ‘Remember that I am still alive’ - Living with Nucleo di Cure Palliative, U.O. Cure Primarie, Bassano incurable, life-threatening disease and positive Aims: One in three cancer patients will experience del Grappa, Italy, 2Università degli Studi di Padova, and negative influences on perceived quality of significant psychosocial distress at some point during Facoltà di Psicologia, Padova, Italy, 3Azienda Sanitaria life: A phenomenological study their illness. Distress levels in advanced cancer are often ULSS N.3 Bassano del Grappa, Direzione Sanitaria, more frequent, ranging from 50% to 70%. Psychosocial Bassano del Grappa, Italy Bjarnadottir K S1, Halldorsdottir S2 interventions may alleviate psychological distress and 1Palliative Home Care Team in Akureyri, Akureyri, improve quality of life for patients. The goal of this Research aims: The aim of the study is the psycho- Iceland, 2University of Akureyri, Akureyri, Iceland presentation is to describe referral patterns and social evaluation of oncological terminal patients’ psychosocial needs of advanced cancer patients newly condition at the intervention of the Palliative Care Unit Aim: As a palliative nurse I noticed that a gap referred to a psycho-oncology counselling program in a (PCU). In this phase patients are hospitalized and PCU sometimes exists between the understanding of health comprehensive cancer facility, which is part of a larger is activated to define a personalized palliative care care personnel and of our clients regarding quality of evaluation study of this program. program at home or in hospice by multimodal life. As the main aim of palliative care is, however, to Methods: All cancer outpatients newly referred to an integrated modalities. contribute to people’s quality of life, I felt impelled to individual psycho-oncology counselling program, over Study design and methods: We evaluated terminal explore the phenomenon from the patients’ point of one year, were eligible. Consenting patients completed patients with advanced oncological disease before view. The purpose was to provide health care personnel a survey of patient demographics, distress levels (Brief hospital discharge. The evaluation was conducted with with a deeper insight into this experience and empower Symptom Inventory-18, BSI-18), coping styles (Cancer a semi-structured interview built to assess the following them to become more able to support their clients. Coping Questionnaire, CCQ), and social supports dimensions: state of consciousness, interactive abilities, Methods: The research approach was the Vancouver (Medical Outcomes Study Social Support Survey, MOS- communication, diagnosis awareness, prognosis School of Doing Phenomenology, since its aim is to SSS). awareness, anxiety and depression symptoms. The construct understanding by grasping the meaning of a Results: Of an accessible sample of 259, 145 patients variables are described by percentage. phenomenon. Ten participants with different fatal completed the survey: 41/145 (28%) had advanced Results: From July 2004 to December 2006 we diseases were selected through purposeful sampling. cancer [women 71%, mean age 57 years (SD=11),

124 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) genitourinary cancer 27%, breast cancer 24%, gastro- collected using a 13-item sources of pressure scale. review methodology, set out to gain an appreciation of intestinal cancer 24%]. Most (56%) were referred by Results: Initial data analysis shows that there is a the amount and type of written material available physicians or nurses, most commonly for emotional positive correlation between death anxiety and burnout about living with the effects of MND. Ultimately 161 (76%) and coping (68%) difficulties. About 54% were among palliative nurses. There is no relationship published and unpublished narratives written between experiencing significant distress (BSI-18 global severity between age and death anxiety or age and burnout. 1968 and 2005 by people diagnosed with the illness index T-Score ≥ 63). The mean CCQ individual subscale Nurses working in hospices showed more levels of were identified and subject to content and thematic was 38 (SD 7) (range 14-56, higher scores more frequent death anxiety and burnout than nurses working in the analysis. coping). The mean MOS-SSS total score was 80 (SD 16) community. Hospital nurses showed most death Results: We focus here on the challenges encountered. (range 20-100, higher scores more support). anxiety and burnout. The steps taken to organise, access and assess huge Conclusions: Advanced cancer patients newly referred Conclusion: Certain aspects of caring seem to be volumes of potential material in a focused manner, to for counselling have significant psychosocial distress instrumental in inducing death anxiety and burnout arrive at a manageable sample of narratives were and limited use of coping strategies. Substantive social among palliative nurses. Burnout Syndrome is best complex. There were also several practical issues to be support is important, yet may not be sufficient, to deal understood by estimating its three components, that is, considered when using internet based material, such as with the significant distress associated with advanced emotional exhaustion, depersonalisation and personal the extent of the medium, the transient nature of cancer. The need for systematic approaches for accomplishment. There is a need for further research to material on the internet and the veracity of the psychosocial distress screening in advanced cancer ascertain the value of social support as a mediating content. Additionally, the use of unsolicited narratives patients will be highlighted. variable. raised issues relating to the need for informed consent Funding: ACB and anonymity, as well as the need for ethical approval. Conclusions: Unsolicited material written by people PE 1.F418 with a fatal illness can legitimately be used as research PE 1.F416 data. Methodological and ethical complexities are Patients in palliative care trials: Are they apparent, particularly with material located on the Body image alteration in the advanced cancer representative of the palliative care population internet for which there is little guidance for patients: Multicentric and descriptive pilot study in general? researchers. As part of this study an algorithm was developed which takes prospective internet researchers Codorniu N1, Mate J1, Tuca A1, Lliro X2, Fuentes S3, Bleda Kennett A1, Droney J1, Marlow C2, Davies A3, Riley J1 through decision making regarding the need to seek M4 1Royal Marsden Hospital, Palliative Care, London, formal research ethics approval. 1Institut Català d’Oncologia, Palliative Care, United Kingdom, 2Royal Marsden Hospital, L’Hospitalet, Barcelona, Spain, 2Hospital Vall d’Hebrò, Information, Sutton, United Kingdom, 3Royal Marsden Palliative Care, Barcelona, Spain, 3Institut Català Hospital, Palliative Care, Sutton, United Kingdom PE 1.F420 d´Oncologia, Palliative Care, Badalona, Spain, 4Institut Català d’Oncologia, Palliative Care, Badalona, Spain High attrition rates due to death and disease An online Delphi consensus process on European progression, heterogeneity of the patient population standards and norms in palliative care Introduction: Cancer patients present changes in and gate-keeping by family/staff are particular physical aspect and corporal integrity due to cancer challenges when recruiting patients to clinical trials in Jünger S1, Payne S2, Radbruch L1 treatments and natural evolution of disease. The body palliative care. Research however is essential to establish 1RWTH Aachen University Hospital, Department of image can be defined as emergent feelings caused by an evidence base for palliative medicine. For research to Palliative Medicine, Aachen, Germany, 2Lancaster particular perception of every person about his own be meaningful it must be carried out in a representative University, Institue for Health Research, Lancaster, body, which can determine auto-esteem, identity and sample of the population in which the results will be United Kingdom interaction with environment. Body image changes applied. (BIC) and the high psychological distress are directly Aim: To determine whether patients recruited to Aims: The worldwide development in the field of related with personal dignity. Despite probability of BIC palliative care studies are representative of patients seen palliative care calls for common guidelines and a increases in advanced cancer patients, there are a few by the palliative care clinical team. consistent language in order to give information to references in palliative care (PC). Method: This retrospective observational study used patients and relatives and guidance to staff and Objectives: data on all patients recruited to quantitative palliative stakeholders. The aim of this study is a Europe-wide a) prevalence of the BIC in advanced cancer patients; care studies, compared with data on all new patients consensus process on standards and norms for b) relation between perception of self-image and seen by the clinical palliative care team over a defined palliative care, more specifically on definitions and objective changes of physical aspect; 12 month period (2006-2007) in a single cancer centre. terminology, common values, and service delivery. c) areas affected by BIC. Results: 234 patients were recruited to palliative care Methods: The scientific footing of the survey is a draft Method: Survey including clinical data and semi- studies. 1087 new patients were seen by the clinical version of the White Paper based on international structured questionnarie about impact of BIC through palliative care team but were not entered onto a study. recommendations, standard reports and publications. categorical and Likert-type scales. Patients who entered a palliative care clinical trial lived Appropriate authority is provided by a remit from the Patients: Advancer cancer patients who accepted to longer than those not in a study. (91.5 days and 53 days board of directors of the European Association for participate. respectively, p<0.0001) Palliative Care. A modified two round Delphi survey has Care setting: PC teams of acute hospitals, socio-health There were significant differences between 2 diagnosis been chosen as method for the consensus building centres and home teams. groups; amongst patients with tumours of the male process. The board members of the national Results: 21 advanced cancer patiets were included, genital tract (p< 0.05) or tumours of the respiratory associations for hospice and palliative care in Europe 57,1% females, 62% married and mean age of 57 years. tract. (p< 0.001) No statistical difference was seen for have been elected as experts as they represent major Mean of Karnofsky and Barthel index was respectively age or gender. stakeholders for the development of palliative care in 53% and 61. Most of patients don’t have psiquiatric Conclusion: The differences in survival time and their country. Given the geographic dimensions of such antecedents but 86% needed psycotrop drugs. 76% of diagnosis between those in a study and those not in a a broad international expert panel, the survey is patients presented external health devices (gastric study may be attributed in part to specific study undertaken online. The draft White Paper was tubes, ostomies, catheter,etc.). Objectivable physic protocols. Differences in time to death may also translated into standardised questionnaire items with 5- changes were observed in 70% of patients and they represent gate-keeping in patient recruitment i.e. point Likert scales. The paper version was pilot-tested presented 2,7 changes/patient. 81% of patients selection of trial patients with better performance among experts from different countries and modified appreciated sever BIC and 72% were worried for this status. in favour of a shorter questionnaire. An online version reason. Affected areas were couple, sons, friends and The results from this study suggest that patients was programmed and pilot-tested with other experts in sexuality (68, 35, 62, 80, 57% repectively). 57% of recruited to clinical trials in this centre are order to maximise user-friendliness. patients leaved to make usual activities caused by BIC. representative of palliative care patients in general, in Results: The Delphi process started in September 2008. 67% talked about BIC but only 14% of them recieved terms of age and gender, but some differences seen in A high commitment could be denoted on part of the sessions specific help. All patients considered these questions diagnosis groups and survival time. experts. During the first survey round, board members very important and 71% though that professionals can from 20 different countries and 30 distinct national (Friday) help them. Discusion: Advanced cancer patients associations participated in the consensus process.

presented a high prevalence of BIC which affects PE 1.F419 Conclusions: Advantages and limitations of an online Poster diferent areas of environement interaction. Delphi survey in European countries with End of life research using published and heterogeneous social, cultural, and technical unpublished illness narratives of motor neurone prerequisites are discussed, as well as the exclusive use PE 1.F417 disease (MND): Methodological considerations of the English language in an expert panel characterised by a broad linguistic diversity. An investigation of the relationship between O’Brien M1, Clark D2 caring, levels of death anxiety and burnout 1Edge Hill University, Evidence-based Practice Research syndrome among palliative care nurses Centre, Ormskirk, United Kingdom, 2Lancaster PE 1.F421 University, Division of Health Research, Lancaster, Nyatanga B1 United Kingdom The involvement of terminal patients in end-of- 1University of Worcester, Health Social Care and life care research: Why and how? Psychology, Worcester, United Kingdom Background: Illness narratives are instruments to document and relay what an illness experience means Deschepper R1, Vander Stichele R2, Bernheim J1, Pardon K1, Aim: To investigate the relationship between caring to the affected person and others close to them. Recent Mortier F3, Deliens L1 (i.e.exposure to death and dying episodes), death times have seen an increase in end of life research 1Vrije Universiteit Brussel, End-of-Life Care Research anxiety levels and burnout among palliative care nurses utilising illness narratives. These can be obtained Group, Brussels, Belgium, 2Ghent University, Heymans working in hospices, the community and hospitals. through interviews, from autobiographies and other Institute of Pharmacology, Ghent, Belgium, 3Ghent Methods: A correlation research design using a cross- print media and more recently from personal web pages University, Bioethics Institute Ghent, Ghent, Belgium sectional survey was employed for this study. The posted on the internet. purpose of the design was to correlate scores of death Aims: The study aimed to A challenge for evidence-based health care is to anxiety with those of burnout. 1. Determine the feasibility of using unsolicited first incorporate patients’ perspectives and shared decision- Data on levels of death anxiety were collected from 213 person narratives as data making. This is especially important in end-of-life respondents using Templer’s revised death anxiety 2. Explore the personal experience of living with MND decisions, when quality of life may take precedence scale. Data on burnout were collected using the 22 item as documented within the narratives. over life prolongation. Patients facing death are likely to Maslach Burnout Inventory. Data on caring were Methods: The search strategy, guided by systematic have different views, preferences and values than non-

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 125 Poster sessions (Friday)

terminal patients. Therefore, it is necessary to involve PE 1.F423 advances in this area. Despite its several benefits, it has terminal patients in end-of-life care research. had only limited use in palliative care research. The However, a number of ethical, practical, and OPCARE9: International interdisciplinary purpose of this presentation is to introduce SEM to methodological problems may arise. Patients can be collaboration to improve end-of-life cancer care palliative care researchers and provide basic procedural harmed by confronting questions (e.g about euthanasia information for its application in palliative care. or the imminence of death). Therefore, selection of Ellershaw J1, On behalf of the OPCARE9 Collaborative patients, duly informed about their diagnosis and 1Marie Curie Palliative Care Institute Liverpool, prognosis, is often necessary. This has practical University of Liverpool, Liverpool, United Kingdom PE 1.F425 consequences, as it makes selection and informed consent procedures particularly laborious and delicate. OPCARE9 is an EU 7th framework coordination & Subject headings on major databases Methodological problems are selection bias, lack of support action project, with the aim of improving care adequate and validated instruments for terminal in the last days of life by systematizing existing Brady D1 patients, the possibility of response shift in the course knowledge and identifying knowledge gaps. OPCARE9 1St Christopher’s Hospice, Library, London, United of the (pre)terminal phase, and the loss of cognitive provides a dynamic interface for health care providers, Kingdom and physical ability in many terminal patients. educatators and researchers in palliative care to meet Quantitative research is often hampered by the and exchange views. Aim: The purpose is to highlight key subject headings feasibility of recruitment of sufficiently large sample The multinational project group is interdisciplinary, of particular relevance to terminal and palliative care in sizes. Qualitative methods have some advantages, such with representatives from clinical professions four major hierarchical bibliographical databases: as validity (or credibility) with lower sample sizes, and (including medicine, nursing, pharmacy, psychology, MEDLINE, CINAHL, PsychINFO and EMBASE. In the possibility to adapt the questions to the emotional physiotherapy and social work), and other sciences, addition, the way the databases are presented in capabilities of the individual participant, e.g. by letting such as epidemiology, sociology, health research, ethics different interfaces eg via Ovid and via National Library the patients tell their story. In participant observation, and law. In addition to the participating European for Health (UK) will be described. the researcher has the opportunity to build a trustful countries—Germany, Italy, the Netherlands, Slovenia, Method: Using the mapping feature of these databases relation with the patient. Furthermore, it is usually less Sweden, Switzerland, and the UK—other regions are as well as the experience of the author, the results of a burdensome for the patient. represented by Argentina and New Zealand. search on these topics in each database will be Conclusion: Terminal patients are indispensable in This presentation highlights some challenging issues presented to ascertain key subject headings. For end-of-life care research but there are several encountered 6 months into OPCARE9, based on instance, on MEDLINE, key subject headings (MESH limitations, especially in case of large-scale quantitative discussions at the two initial project meetings. Issues terms) are “terminal care”, “palliative care”, “terminally research. which have engaged the collaborative as a whole in ill” and “hospices” (exploded where possible). active discussion include: “Bereavement” is also a subject heading in Medline. 1) questioning of established definitions and Results: Each database uses slightly different subject PE 1.F422 assumptions about the nature of expertise and relevant headings that relate to terminal and palliative care. In knowledge; addition, the description of subject headings can vary. Interviewing older people about end of life 2) the timing, role and effects of translation from local For example, on CINAHL palliative care is defined as issues: Experiences of qualitative research in four languages to English, and how language influences the “Provision of care for relief of symptoms. Includes relief countries knowledge obtained; of symptoms in the terminally ill”. On Medline, it is 3) how to include the neglected perspectives in this defined as “Care alleviating symptoms without curing Payne S A1, Rurup M L2, Onwuteaka-Philipsen B D2, process of development, especially those which do not the underlying disease”. Deschepper R3, Pleschberger S4, Seymour J E5 figure in the scientific literature; and Euthanasia is regarded as sub-category of terminal care 1Lancaster University, International Observatory on End 4) how to include the wide variety of cultures between in some databases whereas in others it is regarded as an of Life Care, Lancaster, United Kingdom, 2EMGO and within countries, and utilize both consensus and associated or related term. The latter seems more Institute, VU University Medical Centre, Amsterdam, diversity when systematizing knowledge. logical. Netherlands, 3Vrije University Brussels, Faculy of These sometimes abstract issues inspire lively At least two searches will illustrate the usefulness (or Medicine and Pharmacy, Brussels, Belgium, 4University discussion and engagement in the collaborative group, not) of using these subject headings when searching for of Klagenfurt, Department of Palliative Care and but also present concrete challenges that need to be particular topics. Organisational Ethics, Vienna, Austria, 5University of overcome in the development of specific strategies for Conclusion: It is useful to be aware of the variety of Nottingham, School of Nursing, Midwifery and systematic reviews of knowledge and Delphi key subject headings in terminal and palliative care, Physiotherapy, Nottingham, United Kingdom investigations. These issues and means of dealing with especially for those new to research. When one them in fulfilling the aims of OPCARE9 have relevance examines them more closely, it is also debatable Background: Interviewing is frequently used for data for cross-cultural and interdisciplinary collaboration in whether the hierarchical structure is always helpful. collection in qualitative studies to gain perspectives of general. older people on end of life care but there is limited debate about the methodological issues faced in PE 1.F426 practice. This paper has arisen from a European study PE 1.F424 focusing on the secondary analysis of interview data Development of person centered information derived from older people about end of life in the Applications of structural equation modeling in processing at palliative oncology outpatient Netherlands, Belgium, Germany and the United palliative care research units - Examples from qualitative outcome Kingdom. analysis Aims: This paper aims to explore the range Palacios M1, Violato C2, Pereira J L3, Spice R4 methodological issues that European researchers faced 1University of Calgary, Department of Oncology, Friberg F1, Öhlén J2 in interview studies to expand options for research Calgary, Canada, 2University of Calgary, Department of 1Sahlgrenska Academy at the University of Gothenburg, practice. Medical Sciences, Calgary, Canada, 3University of Institute of Health Care Sciences, Gothenburg, Sweden, Methods: Methodological issues were identified Ottawa, Division of Palliative Care, Ottawa, Canada, 2University of Gothenburg, Institute of Health Care during workshops focusing on interviews with older 4Palliative and Hospice Care, Okotoks, AB, Canada Sciences, Gothenburg, Sweden people (n=80) from six projects which had broadly similar concerns conducted in four countries. To Structural Equation Modeling (SEM) is a flexible Background: The palliative care at oncology out- facilitate this, the team compared transcripts and field statistical approach that may be used for the analysis of patient units involves close contact between patients notes. Where necessary these were translated. Summary multivariate data to measure underlying hypothetical and health professionals over an extended period. The ‘pen portraits’ about interviews and accounts of constructs (latent variables) and their diversity of patient concerns, distress and information sessions methodological issues were compared. interrelationships. SEM is a family of statistical needs raises questions about how to create supportive Results: Three common methodological issues were procedures that builds on a number of techniques such person centered palliative care.

(Friday) identified: as correlation, regression, analysis of variance (ANOVA), Aim: The aim was to describe characteristics in a i) The opening and closing of interviews and approach factor analysis, and path analysis to explain the narrative-based pedagogical intervention about the

Poster to sensitive issues; building trust and gaining the relationships between measured and latent variables. provision of information to patients with recurrent confidence of participants for discussing end of life care SEM has many advantages over other statistical gastro-intestinal cancer. The intervention is based in an was evident across cultures, nevertheless it appeared approaches; advantages include: it allows the on-going project about information processing in easier to initiate discussion on end of life in the researchers to model underlying constructs that palliative cancer care at an out-patient palliative Netherlands as opposed to the other countries independent variables may load upon, achieving oncology unit. The objectives are: ii) All researchers experienced other people being higher levels of abstraction and understanding of the - to describe the characteristics of the intervention present: for this different management strategies were relationship between these variables; since hypothetical based in the procedures of Qualitative Outcome identified constructs are measured by multiple indicators where Analysis (a qualitatively derived theory) iii) Emotions of interviewers and interviewees; it measurement error is averaged out, it allows for the use - to problematize information processing in the area of appeared that personal and professional backgrounds of path coefficients that are corrected for measurement palliative cancer care were more influential than national culture. error in the structural equation models; and it allows - to discuss the pragmatic utility of Qualitative Conclusion: The importance of sharing research for the development, refinement and validation of Outcome Analysis practice across cultures was recognised as useful to theories and hypothesized relationships between - to discuss pedagogical strategies applicable for a increase awareness of the commonality of these issues variables. person centered information in palliative cancer care. in older person end of life care, to learn from each The needs of terminally ill patients are numerous; they Methods: The procedures of Qualitative Outcome other and to be aware of possibilities and limitations for range from biomedical issues such as symptom Analysis (QOA) is used as a method for transforming managing such issues across national boundaries. assessment and management, to management of qualitatively derived results rooted in the patient´s psychological, spiritual and social needs. The perspective and the patient´s context to the clinical complexity of the interrelations between variables setting. moderating palliative patients’ outcomes calls for the Results: The concepts of “Managing existential use of strong analytical tools that may help identify uncertainty”, “Confronting existential uncertainty” them. A clear understanding of the factors underlying and “Living existential Certainty” were derived from palliative care will allow health professionals to previous studies and forms the basis for the QOA and adequately address patients’ needs and as a result the information processing described. Assessment improve patients’ outcomes. SEM is a useful research questions and behavioral signs as indicators of and statistical method that has the potential for outcomes to the three concepts respectively were

126 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) developed. Palliative care strategies for the intervention 5) prochlorperazine, from within Leckhampton Court’s Day Hospice. It were finally selected. 6) thiethylperazine, provides the care and services for patients with Conclusions: The procedures of transforming the 7) phenothiazines switch for treatment failure. specialist palliative care needs in a responsive and qualitatively derived data to clinically acceptable Level B2 evidence exists for flexible manner. criteria is discussed. The pragmatic relevance of using 1) haloperidol, This paper reflects on the current model of hospice at QOA is considered. 2) cyclizine, home, the challenges encountered and lessons learnt in 3) hyoscine butylbromide, reconfiguring the service to increase its sustainability 4) octreotide and dexamethasone for bowel and quality of patient care. PE 1.F427 obstruction. *Figures quoted from the King’s Fund: Improving Level C evidence exists for Choice at End of Life - Rachael Addicot & Steve Dewar Open label study of mirtazapine for symptoms 1) olanzapine, April 2008 and QOL in advanced cancer 2) propofol, 3) ondansetron, Kirkova J1, Davis M P1, Walsh D1, Lagman R1, Bennani- 4) cannabinoids, PE 1.F431 Baiti N1, Seydova-Khoshknabi D1 5) glycopyrrolate in bowel obstruction, 1The Harry R. Horvitz Center for Palliative Medicine, 6) carbamazepine for leptomeningeal metastases, Does the use of bedside sonography influence the Department of Solid Tumor Oncology, The Cleveland 7) haloperidol plus ondansetron for refractory emesis. clinical management of palliative care patients? Clinic, Cleveland, United States Conclusion: Phenothiazines or metoclopramide are antiemetics of choice. Evidence supports dose titration Gehmacher O1, Wüstner A1, Mathis G2, Höfle G1 Aim: Anorexia, anxiety, insomnia, depression, fatigue, and switch; the addition or switch to a 5HT3 R 1LKH Hohenems, Palliative Care Unit, Hohenems, and nausea reduce quality of life (QoL) in cancer. We antagonist; the addition of dexamethasone to 5HT3 Austria, 2Private Practice, Rankweil, Austria studied the benefits and tolerability of mirtazapine for receptor antagonists plus phenothiazines or these symptoms in advanced cancer. metoclopramide. Antiemetic choices are based on Introduction: Palliative Care patients are severely ill Methods: An open label 2-week (W) trial of relatively weak evidence. and suffer from multiple complaints. Optimal mirtazapine with biweekly follow-up at W4 -8. Patients symptom control is essential, but unnecessary with poor QOL <5 (1 “poor”- 7 “excellent”) and at least diagnostic procedures should be avoided. The use of 1 target symptom (1 “not at all” - 4” very much”) PE 1.F429 bedside sonography in a Palliative Care Unit was the started on 15 mg at night. Doses could be increased to aim of this study. 30 mg at W2 depending on response (EORTC QLQ C- Phase II trial to evaluate the efficacy and safety Methods: From January 2004 till September 2006, 478 30) and toxicity (NCI CTCAE). A > 1 point improvement of oral transmucosal fentanyl citrate (OTFC) in US examinations were performed. Indications for US (QOL and symptoms) was a response. We measured terminally ill patients experiencing dyspnea were: dyspnoea (152 pat., 31,8%), basic staging (133 response [mean and responders (R) relative to baseline pat., 28,2%), abdominal discomfort (95 pat., 19,9%), symptoms], toxicity and dose relationship. Analysis: Trujillo R1, Alcaide J1, Perez D1, Rueda A1 follow up (42 pat., 8,8%), central venous line (18 pat., descriptive, Chi-square, Wilcoxon signed rank test, 1Hospital Costa del Sol, Oncology, Marbella, Spain 3,8%) and others (36 pat.,.7,5%). ANOVA. Results: In 245 pat. (51,3%) the clinical management Results: N=51 entered. Completed: W1 (34), W2 (22), Introduction: Dyspnea is a frequent symptom in was influenced by sonography. US guided interventions W4 (12), W6 (9), W8 (7). Median age 63 (48-92); male palliative medicine, and may seriously affect patient (149 cases, 31,2%) incuded: 18/34; median ECOG: 2 (1-3). D1-7 improvement mean quality of life. Drainage of (SD) and R: anorexia 0.4 (1.0), p= 0.02, R=12/24; anxiety Objective: We designed a phase II trial to evaluate the - pleural effusions 64 pat. (13,4%) 0.4 (0.7), p<0.001, R 9/29; depression 0.3 (0.6), p=0.04, efficacy and safety of oral transmucosal fentanyl citrate - ascites 32 pat. (6,7%) R 4/19; insomnia 0.8 (1.2), p <0.001, R =15/27; nausea (OTFC) in terminally ill cancer patients experiencing - abscesses 7 pat. (1,4%) 0.3 (0.9), p=0.02, R11/18. QOL improved 1.1 (1.6), dyspnea. Central venous line: 18 pat. (11,4%) p<0.001. D7-14 symptom response and QOL: plateau, or Methods: Eligible criteria were: patients older than 18 Others: 9 pat. (1,8%). benefit was lost, appetite worsened. 10/22 had dose years of age with satisfactory baseline cognitive In 163 pat. (38,1%) treatment was changed due to the increased , but none further improved. Gr >3 side function diagnosed with end-stage cancer complaining US results. In 7 patients (1 ,4%) therapy was abandoned effects: xerostomia (5); sedation (3); constipation (3); of dyspnea, admitted to the palliative care unit from because of the US findings. nausea (3). Discontinued (17) v W1, v W2 did not differ January 2007 to September 2008. Inform consent was Conclusion: Bedside sonography influences the at baseline for ECOG, overall health, QOL, target required. At the onset of dyspnea, enrolled patients clinical management of palliative care patients: The symptoms, and pain. 7/17 voluntarily stopped due to were instructed to slowly dissolve the OTFC lozenge possibility of US guided drainage of pleural effusions or sedation, not by NCI criteria. and rate their dyspnea on a 10 point visual analog scale ascites attributes to an optimal symptom control. The Conclusions: Mirtazapine reduced anorexia, anxiety, at 15-minute intervals for 60 minutes. Respiratory rate diagnosis f.e. of pneumonia, bowel obstruction or insomnia, nausea, depression, and QOL improved (RR) and arterial oxygen saturation (SaO2) were congestive cardiac failure based on ultrasound results quickly. All benefits were W1, which did not further recorded at similar intervals. Patients were observed for leads to changes in medical treatment. improve with time or with dose escalation. Intolerance approximately 48 hours. due to sedation may be a problem greater in cancer. A Results: 25 patients were found eligible. 15 patients placebo controlled RCT is needed to confirm response. had Lung Adenocarcinoma stage IV, 5 Colon PE 1.F432 Adenocarcinoma with lung metastases and 5 breast cancer stage IV with malignant pleural effusion. In 20 Is symptom burden really a good criteria to PE 1.F428 (80%) cases, patients experienced rapid relief of discharge patients from palliative care units? dyspnea as soon as five minutes. No significant adverse Evidence-based treatment in cancer: A systematic events were reported. Pautex S1, Guisado H2, Weber C3, Vuagnat H3, Zulian G1 review Conclusions: OTFC appears to be safe and effective for 1Division of Palliative Medicine, Geneva, Collonge- dyspnea in terminally ill cancer patients. This findings Bellerive, Switzerland, 2Division of Palliative Medicine, Davis M P1, Lagman R1, Le Grand S1, Estfan B1 are promising and merit further research. Geneva/ Continous Care, Collonge-Bellerive, 1The Harry R. Horvitz Center for Palliative Medicine, Switzerland, 3Division of Continous Care, Geneva, Department of Solid Tumor Oncology, Taussig Cancer Collonge-Bellerive, Switzerland Center, The Cleveland Clinic, Cleveland, United States PE 1.F430 Research aims: Pphysical symptoms and Introduction: A previous review (Glare, 2004) found Making it happen: Improving our care and psychological distress are frequent admission criteria in 21 antiemetic studies. We performed a systematic services palliative care units. The aim of this study was to detect sessions review of treatment for emesis in cancer. symptomatic improvement before discharge of patients

Methods: A systematic review used MESH terms Flanagan S A1 from the palliative care. (Friday) “nausea, vomiting, emesis and cancer, neoplasm, 1Sue Ryder Care - Leckhampton Court Hospice, Hospice Study design and methods: Retrospective chart

malignancy and treatment, drugs, medication”. Pub at Home, Gloucestershire, United Kingdom review of all patients with an advanced oncological Poster Med, Ovid Medline and EMB Reviews Cochrane disease hospitalised in the palliative care units of the Register were searched. Trials were randomized Research shows that although the majority of people University Hospitals of Geneva from June to August controlled trials (RCT), prospective single arm, cohort, report that they would choose to die in their home, 2008 who were discharged home or to a long term care retrospective and case reports. Antiemetics for only a minority of patients achieve this wish; unit. Exclusion criteria was inability to complete chemotherapy or radiation were excluded. Evidence improving choice at end of life analysis suggests that Edmonton Symptom Assessment System at admission was graded: A - RCT; B1 - single arm prospective studies; home deaths rose from 19% in 2005-6 to 25% during or at discharge. B2 - multiple drug or guideline studies for which single 2006-7*. In January 2007 Sue Ryder Care’s Results: 25 patients were included (13 men, mean age: drug responses cannot be determined; C- cohort, Leckhampton Court Hospice piloted a ‘Hospice at 74.44±7.75). Cancer diagnosis was: respiratory (n: 11), retrospective studies, case reports. Home’ programme of care for palliative patients whose gastro-intestinal (n: 8), urological (n: 4). Ten patients Results: 70 studies included 10 RCT and 10 reviews. preferred place of death was at home, this was a natural were admitted from an acute care unit and 15 from Level A evidence exists for extension of the care already offered by Leckhampton home. Reasons for admission were decrease of general 1) metoclopramide, Court. This paper reflects on the reconfiguration and condition (n: 13) and poor symptom control (22). 2) tropisetron for metoclopramide or chlorpromazine development of the Hospice at Home Service, drawing Twelve patients were transferred to long term care failures, on the learning from the pilot service evaluation, and units, 1 to a nursing home and 12 returned home. 3) tropisetron plus metoclopramide or chlorpromazine, feedback from service users. Mean (±SD) intensity of symptoms at admission (A) and 4) dexamethasone plus tropisetron-plus The Hospice at Home service aims to prevent patients discharge (D) was: Pain: A 2.8±3.0, B 1.9±2.0; Nausea: A chlorpromazine or metoclopramide, nearing the end of their life from being admitted to the 1.1±2.4, B 1.1±2.6; Dyspnea: A 1.7±2.3, B 2.1±2.6; 5) no response to P6 bracelets or hospice or hospital wherever possible. It provides Fatigue: A 4.4±3.6, B 3.8±3.4; Drowsiness: A 3.3±3.3, B 6) metoclopramide or ondansetron with morphine patients at the later stages of their illness to access the 3.5±2.9; Appetite: A 4.3±3.3, B 3.8±3.4; Anxiety: A emesis. same high level of care and support that they would 3.3±3.5, B 2.7±2.5; Depression: A 3.6±2.8, B 3.1±3.0; Level B1 evidence exists for receive in the hospice or hospital in their own home, Well-being: A 3.7±2.5, B 4.1±2.3;Total: A 28.2±15.6, B 1) chlorpromazine, remaining close to family and friends, in familiar and 26.4±14.8. P was>0.05 between intensity of symptom at 2) diphenhydramine, reassuring surroundings. It also provides much needed admission and at discharge. 3) levomepromazine, respite for carers at this difficult time. As a community Conclusion: Symptom management is crucial in 4) perphenazine, based service Hospice at Home is jointly co-ordinated palliative care; however, some patients are still able to

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 127 Poster sessions (Friday)

leave the palliative care unit without improvement of Systematic Reviews 2005 Issue 4. Hand searches of a other causes of fever were excluded. The patient their symptoms. Other aspects, particularly psycho- number of palliative care journals were also undertaken received meropenem then piperacillin+tazobactam social and not mentioned at admission, appear (Palliative Medicine, Journal of Pain and Symptom empirically and maintained on regular acetaminophen fundamental criteria to permit discharge of patients Management, Progress in Palliative Care, Journal of without response. In addition, fever did not respond to with an advanced oncological disease. Palliative Care, Journal of Palliative Medicine) . No indomethacin and responded to dexamethazone for restriction was placed on the language of the original only 2 days. After 2 weeks of hospitalization, the article. palliative care consultation team started her on PE 1.F433 Results: Four papers - all case series or case reports - naproxen 250 mg twice daily. The patient experienced a reporting generally favourable reports of the use of dramatic response with complete lysis of fever and Should we use systematic screening for Propofol as sedation for intractable symptoms in the control of sweating, bony aches and fatigue. The next depression in palliative care? A systematic last days of life especially when one or more other day, she was discharged home with an ECOG literature review drugs have failed. performance status of one. Conclusion: Since these four papers are essentially Conclusion: Overlooking neoplastic fever may lead to Rhondali W1, Lloyd-Williams M2, Laurent A1, Barmaki M1, hypothesis-generating, it will be necessary to design unnecessary hospitalization, investigations and Filbet M1 and undertake a robust controlled clinical trial of treatment that, in addition to uncontrolled symptoms, 1Hospices Civils de Lyon, Centre de Soins Palliatifs, Propofol versus accepted best current practice to can result in a significant suffering. In the palliative Lyon, France, 2Academic Palliative and Supportive Care determine the effectiveness of Propofol for terminal care setting, neoplastic fever should be considered in Studies Group, Liverpool, United Kingdom sedation. febrile advanced cancer patients after exclusion of other causes. Unless otherwise contraindicated, naproxen can Depression in the most common psychiatric illness in relieve distressing symptoms and avoid unnecessary patients with advanced cancer and it is known to PE 1.F437 interventions in patients with neoplastic fever. reduce quality of life (Block 2000). In clinical practice it’s often assumed that depression affect the presence A retrospective review of the use of octreotide in and intensity of physical symptoms. (Ciaramella 2001; an acute hospital palliative medicine referral PE 1.F439 Teunissen, de Graeff et al. 2007). These physical service symptoms (pain, sleep disturbances, anorexia) can be Application of essential oils in palliative care improved by an adequate treatment of depression (F. Balding L1, Waldron D1, Mannion E1 Steifel 2001). 1Galway University Hospital, Dept of Palliative Lackinger D1, Schweigreiter-Moe C1, Wirnsberger C1, Hrebejk Aim: The aim of this review is to identify all the known Medicine, Galway, Ireland G1, Wieser C1, Zink M1 literature on systematic screening of depression in 1Hospital St. Veit/Glan, Anaesthesiology and Intensive palliative care, and its benefits. Octreotide is a synthethic analogue of somatostatin. Medicine, St. Veit an der Glan, Austria Methodology: Relevant research articles were There is a paucity of published data on the doses of identified and retrieved from a systematic search of octreotide used in day-to-day clinical practice in Aims: Aroma therapy is defined as an alternative computerized database (Medline, BDSP). All literature patients with advanced malignancy. The aim of this medicinal treatment using essential oils to support well searches span from December 1997 to December 2007. audit is to study the indication, dose ranges and being and health, to recreate relaxation, to release The electronic database was searched by exploding the effectiveness of octreotide in the setting of intestinal energy and to re-establish balance of body and mind following Medical Subject Heading search terms obstruction, fistulae, gastrointestinal bleeding and and therefore it is used in palliative care to treat several “depression” and combining with “advanced cancer”. diarrhoea. symptoms. Three reviewers independently assess initial data from A retrospective audit of all patients referred to the Methods: Essential oils are applied transdermal, nasal, this first listing. Palliative Care Medical Service at UCHG from January rectal and according to this there is an effect on After the first author graded each paper according to 2007 to March 2007 was performed. function of several organs and in addition to this, by studies’ quality of evidence. Because studies were Data was obtained for 121/147 patients (82%). 14 were sense of smell, the limbic system and further the heterogeneous, we have not attempted to perform on octreotide (11%). The indication for 8 patients autonomic nervous system is influenced. In treatment formal statistical data synthesis or meta-analysis. (57%) was bowel obstruction. The average starting dose with essential oils several guidelines are to be Instead we present and discuss each individual study. was 1250mcg/24hr in a continuous subcutaneous considered. It is necessary to use only diluted oils and Results: The searches yielded 365 references and infusion (CSCI) which in most patients increased over to test compatibility before application. Only following the reading of abstract 60 papers were time to a maximum of 3000mg/24hr CSCI. Results of substances of high quality should be applied. obtained. From those 60 articles, 17 were excluded. data recording use of anti-emetics, nausea scores, Results: In palliative care special results can be reached Forty-three remained articles were included in our number of vomits, NG tube use and pain scores are by using relaxing, fear and pain releasing and fetidness systematic review. shown in table format, and showed a reduction in reducing oils. The effectiveness is evidenced in several Conclusion: This systematic review highlights the symptoms with use of octreotide over time. 2 patients clinical trials. In the context of palliative treatment we need for a systematic screening for the depression. It is stayed on octreotide long-term. 3 patients (37.5%) prefer to use essential oils of citric fruits, lavendel, a “silent” symptom, and very often the clinical feature experienced steatorrhoea. Of the 3 patients (21%) who rosemary, bergamod, rose, petit grain, fennel, anise, is neglected by the caregivers and physicians as a were treated with octreotide for diarrhoea peppermint, melissa, cajeput etc. normal sadness facing a disease threatening the life. A (chemotherapy and radiotherapy-induced), the average Conclusion: Therefore treatment with essential oils is systematic screening can improve the early treatment, starting dose was 1000mg/24hr CSCI. A reduction over a good complementary kind of therapy additional to including the non-pharmaceutical approach, and arise time of number of bowel motions, nausea and anti- clinical medicine. the team awareness about the depression. diarrhoeal use was shown. No patient stayed on octreotide long-term. One patient experienced steatorrhoea. Data was also recorded for 3 patients who PE 1.F442 PE 1.F434 received octreotide for management of fistulae and for haematemesis. Constipation in patients with advanced cancer: Withdrawn Octreotide was shown to be useful in the management An action research approach to management of bowel obstruction, diarrhoea and other conditions. In many cases effective symptom control was only Gale S1, Trotman I1, Aitken J2, How C2 PE 1.F435 achieved using higher doses than that stated in the 1East & North Herts NHS Trust, Michael Sobell House, current literature. This retrospective audit goes some London, United Kingdom, 2Bucks New Uni, Propofol for terminal sedation in palliative care - way towards addressing the issue of dosage and may aid Buckinghamshire, United Kingdom A systematic review further study in this under-researched area. sessions Constipation in cancer and palliative care is frequent McWilliams K1, Keeley P W2, Waterhouse E T3 and has a profound adverse effect on patients´ lives.

(Friday) 1Hairmyres Hospital, East Kilbride, United Kingdom, PE 1.F438 Semi-structured interviews and focus groups revealed 2Glasgow Royal Infirmary, Palliative Care Team, that poor management of constipation was due to poor 3

Poster Glasgow, United Kingdom, LOROS Hospice, Leicester, Naproxen for neoplastic fever: A simple knowledge and ambivalent attitudes of health care United Kingdom treatment for a distressing syndrome professionals (HCPs), inadequate patient education and a lack of a concordant approach. Patients described Aim: Sedation is used in the care of the dying to Alsirafy S A1, Abou-Elela E N1, El Faramawy Y I1, El Mesidy feeling abandoned, their condition trivialised and alleviate severe and distressing symptoms when other S M1 many suffered distress and embarrassment. The means fail. It can be used in an attempt to control 1Kasr Al-Aini School of Medicine, Cairo University, researchers postulated that constipation management physical symptoms such as pain and dyspnoea, as well Palliative Care Medicine Unit, Clinical Oncology would be improved by redressing the educational needs as for spiritual and psychological symptoms. In cases Department, Cairo, Egypt of HCPs, imparting knowledge to patients and working where standard treatments fail, the anaesthetic agent to develop a partnership approach. Propofol has been used as an alternative. We undertook Introduction: Neoplastic fever is a frequently under- Using a collaborative multidisciplinary action research a systematic review of published evidence of the diagnosed paraneoplastic syndrome that affects around methodology, HCPs empirically explored reducing effectiveness of propofol for terminal sedation. 15% of cancer patients. Its diagnosis is based on the constipation by improving patient understanding, Methods: exclusion of other causes of fever and it can be optimising laxative regimens and improving Inclusions: Prospective or retrospective trials managed effectively with non-steroidal anti- concordance through the development of a nurse-led (controlled or uncontrolled) or case series of propofol inflammatory drugs specially naproxen. We report a clinic. for sedation in advanced incurable disease in either case of renal transitional cell carcinoma associated with A cohort of 29 (9m/20f) patients with severe/intractable generalist setting or specialist palliative care units. neoplastic fever. constipation was recruited to a clinic utilising a patient- Exclusions: Use in anaesthetic or intensivist settings Case: A 37 years old female was first diagnosed to have focused, education-based management strategy. (e.g. intensive care units); Identification of relevant left renal pelvis transitional cell carcinoma in Dec 2007. Laxative samples and pictorial representations were studies: Using the search terms: [Hospice Care/ OR She had a metastatic disease to the lungs and liver at used as educational aids. Individuals’ laxative regimens Terminal Care/ OR Palliative Care/ OR palliative.mp] presentation and responded poorly to two regimens of were reviewed and found to be sub optimal in dose, AND [Propofol/]. palliative chemotherapy. Nine months after diagnosis frequency of use or both. Listening to patients Studies were identified using a detailed search strategy she was hospitalized with an ECOG performance status concerns, addressing misconceptions and providing a from a number of electronic databases: Embase (1988- of three, fever, sweating, fatigue and generalized bony physical examination were reported as being ‘help at 2005); Medline (1966-2005) Cinahl (1982- aches. Clinical examination and radiological last’. 2005),Cancerlit (1962- 2005) The Cochrane Database of investigations failed to locate a source of infection and Following attendance there was an immediate

128 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) improvement in bowel function in all patients who Conclusion: To avoid unnessarary transports PE 1.F447 became more autonomous and concordant with their abdominal paracentesis can be provided to patients in a treatment regimens. All patients reported having a safe outpatient setting. Overcoming obstacles to conducting trials in the better understanding about the causes and context of palliative care: An exploratory phase consequences of constipation and understanding the II cluster randomised trial to investigate the role and use of laxatives. Clinic attendance was PE 1.F445 effectiveness of the ‘Macmillan Approach to minimised by using telephone follow-up that was Weight loss and Eating difficulties’ (MAWE) found to be beneficial and less burdensome. Anaemia and other predictors of fatigue among This study highlights the importance and benefits of patients on palliative therapy for advanced Hopkinson J B1, Foster C1, Nicholls P1, Fenlon D1, Okamoto adopting a concordant approach and paying attention cancer I1, Wright D N M1, Scott I1, Addington-Hall J1 to detail when managing constipation in patients with 1University of Southampton, School of Health Sciences, cancer. Latvala A1, Syrjänen K1, Salminen E K1 Southampton, United Kingdom 1Turku University Hospital, Radiation Oncology, Turku, Finland Background: Weight loss and anorexia are symptoms PE 1.F443 experienced by up to 80% of people with advanced Aim: Predictors of fatigue among cancer patients on cancer. These symptoms can be distressing for both What is the current evidence in management of palliative treatment are ill defined. The role of anaemia patients and their carers. Effective management of this dyspnoea in advanced disease? and other predictors of fatigue was studied in cancer weight and eating related distress is likely to improve patients on palliative treatment. quality of life and could reduce demands on supportive Simon S1, Bausewein C2 Methods: A cohort of 128 consecutive patients (61 care services. 1Institute of Palliative Care (IPAC), Oldenburg, males and 67 women, mean age 63.6 yrs; range 36-85) The Macmillan Weight and Eating Studies (2000-2008) Germany, 2King’s College London, School of Medicine, was interviewed using the Edmonton Symptom have developed the first complex psychosocial Department of Palliative Care, Policy and Assessment System (ESAS) questionnaire, with 11 items intervention for weight and eating related distress in Rehabilitation, London, United Kingdom describing cancer-related symptoms in VAS scale. people with advanced cancer and their carers: The Routine haematological samples were analysed at the Macmillan Approach to Weight and Eating (MAWE). Background: Dyspnoea is one of the most common time of interview. Both univariate- and multivariate Aim: This paper is about a Phase II trial of MAWE. It and distressing symptoms in advanced malignant and analysis was used to assess the independent predictors presents non-malignant diseases. The management isn’t always of fatigue. i) challenges of conducting the exploratory trial in the successful although research is increasing over the last Results: Of the 10 symptoms recorded, fatigue was the context of palliative care, and how these were few years. single most frequent one, reported by 91.3% of the successfully addressed, and Aim: To demonstrate the current evidence of non- patients, followed by pain (74.8%), sleeplessness ii) evidence that MAWE can help patients and their pharmacological and pharmacological measurements (78.0%) and depression (74.2%). Anaemia was a carers live with advanced cancer. in the relief of dyspnoea in advanced malignant and significant determinant of fatigue (p=0.040)(OR=5.09; Methods: The Phase II trial, conducted in the UK in non-malignant diseases. 95%CI 1.013-25.647). Of the symptoms recorded, 2006-2007, was of cluster randomised design. It used Method: Review of the literature and current practice fatigue was significantly associated with depression mixed methods to compare an intervention group in palliative care (including two own Cochrane (p=0.035), loss of appetite (p=0.016), anxiety (p=0.050), (n=25), who were supported by MAWE trained Clinical reviews). and sleeplessness (p=0.016). Total wellbeing was Nurse Specialists (CNSs); with a group who received Result: Management of dyspnoea comprises both non- negatively associated with fatigue (OR=0.48, 95%CI standard care (n=25), the Control Group. The trial was a pharmacological and pharmacological interventions. 0.011-0.020)(p=0.0001). In multivariate analysis, feasibility study. Its purpose was to test There is good evidence for pulmonary rehabilitation in anaemia was the most powerful independent predictor i) recruitment and data collection process, COPD patients and there seems to be also good for for fatigue, with OR=38.27 (95%CI 2.62- ii) the deliverability and acceptability of MAWE, and neuromuscular electrical stimulation and chest wall 559.19)(p=0.008), followed by sleeplessness (OR=14.06 iii) the efficacy of MAWE. vibration in COPD patients. Evidence for the use of 95% CI 1.44-137.02 p=0.023) and loss of appetite Results: The study achieved its recruitment target, data walking aids and breathing training is moderate. The (OR=10.30 95% CI 1.04-101.10, p=0.045). Fatigue was collection tools were acceptable to participants, and evidence for various other interventions such as unrelated to sex and age, as well as to the type of cancer CNSs were able to deliver MAWE in the context of their acupuncture and music can not be judged due to and the treatment category. everyday practice. Contamination of the MAWE group limited numbers of studies. For pharmacological Conclusion: Fatigue was extremely common among prior to baseline data collection was problematic. measures, there is good evidence for oral and parenteral cancer patients on palliative care. The single most However, both quantitative and qualitative data opioids but not for the nebulized route. Although powerful independent explanatory factor of fatigue was analysis support the proposition that MAWE can help benzodiazepines are widely used there is currently no anaemia, implicating a need for interventional studies. patients and their carers live with advanced cancer. evidence to support their use for the relief of dyspnoea. Conclusion: The evidence collated supports the Regarding the use of oxygen, no consistent beneficial argument that a RCT of MAWE is warranted, but it effect could be shown but some patients do feel better PE 1.F446 should be of a revised design. after oxygen application. Other drugs such as Funding body: Macmillan Cancer Support, UK phenothiazines, nebulized furosemide, and Nutrition care - A forgotten aspect of palliative antidepressants have been tested but there is not care enough data to judge the evidence at this time. PE 1.F448 Conclusion: There overall evidence for the treatment Choudhary N H1 of dyspnoea is limited. Further well conducted trials are 1Rotherham NHS Foundation Trust, Nutrition and Role of cortico-steroids in palliative care needed in this area to reduce the burden of this Dietetics, Rotherham, United Kingdom common and distressing symptom. Muckaden M1, Dighe M1, John P1, Nair S2 Without food, life is not possible and some form of 1Tata Memorial Centre, Palliative Care, Mumbai, India, nourishment should be provided to every patient who 2Private Practice, Delhi, India PE 1.F444 is capable of eating. The continued receipt of food and water is fundamental to life, and to deny an individual Introduction: Patients referred to the Palliative Care Outpatient setting for abdominal paracentesis of these essential substrates seems morally indefensible. Clinic have advancing cancer, with a plethora of malignant ascites To observe the anorexia, fatigue, wasting, debilitation- symptoms, needing rapid relief. Cortico-steroids are the-cachexia of the patients with advanced cancer is a used regularly . Some unusual indications are presented Fiechtner H1, Freier W2, Papke J3 dishearting experience for every one. in this paper. 1Oncological Center, Stuttgart, Germany, 2Practice for Food is more than nutrition and plays a very important Materials and methods: All case papers of patients sessions Oncology and Palliative Medicine, Hildesheim, role in maintaining hope and offering some means of treated at the Palliative care Unit since January 2008

Germany, 3Practice for Internal Medicine and Palliative comfort to patients. Adequate nutritional intake is often were retrospectively analysed for use of corticosteroids, (Friday) Care, Neustadt, Germany difficult, if not impossible, for the person with a indications, dose, time-frame and efficacy.

terminal illness. Patients, families, and caregivers Results: 1350 consecutive case files were analysed. Oral Poster Aim: The management of drug-therapy resistant struggle to continue providing food and fluids in the Dexamethasone was the only steroid used in 215 malignant ascites is a significant challenge in palliative face of declining ability and interest. patients (16%); maximum 24 mg per day, Unit policy ; care. Abdominal paracentesis is an accepted method to During the year of 2006, total 123 patients were no emergencies. The most common indication was palliate symptoms like abdominal pain, shortness of referred to dietitian for dietary support and advice peritumoral oedema In the Head & Neck area, where breath, or early satiety (1). Often these patients were during their palliation. It is shocking that >10% patients symptoms are especially distressing ,it was found very hospitalized solely because physicians suspect were died or the appointment was cancelled due to effective in 177 patients; a low dose was used for upto 4 complications (2). Using modern paracentesis needles poor health. Most of patients were referred to dietitian months. For brain and spinal mets., a high dose was at least following abdominal paracentesises are possible at the last stage of life/ disease. The understanding and used in 52 patients for 7-10 days and a dose of 2-4 mg to provide in an outpatient setting. awareness about the role of nutrition in palliative care was maintained, even in diabetics and hypertensives. Methods: 23 Patients with an expected ascites volume is very low among clinicians. Most of these patients Found very useful for neuropathic pain, with of more than 2 l were included. An earlier ultrasound were referred to dietitian on the request of the family. conventional medications, in 6 patients. For guided ascites paracentesis in medical practice or No process of nutritional screening exists and the breathlessness,found effective for 18 patients. With palliative care unit was optional desired. Outpatient importance of nutrition in the Palliative phase is anorexia and cachexia, improved apetite and well being punction was operated at the same point of the earlier forgotten. in 12 patients. 80% of the patients reported punction or at the typical punction point in left lower Through nutritional screening and assessment is, improvement in these indications, when used primarily abdomen. After skin desinfektion a punction set with a therefore, paramount to identify patients who are for other symptoms. 1 patient with pericardial effusion one-way trocar and a perforated catheter set was used. malnourished or at risk of malnutrition in order to and 21 patients with lymphoedema were relieved. Time Results: Abdominal paracentesis could be provided to provide optimal nutritional care to minimize effects of administration- By convention, steroids are reported patients in medical practice as well as at home or in malnutrition, cachexia and fatigue. to ineffective after 4-6 weeks; our patients were hospice. The Retreatment was easy due to the mark of Finding and treating nutrition problems early may help maintained, with minimum side effects, for upto 4 the former punction but also not pretreated patients the patient gain or maintain weight, improve the months in adults. Where high dose was given, it was could obtain abdominal paracentesis. Serious patient´s response to therapy, improved quality of life, tapered within 7-10 days and a low dose maintenance complications were not seen and in several cases reduce complications of treatment and more was continued The indications are much more in antineoplastic agents could be administered after satisfaction among patients and carer. paediatric tumours. paracentesis. Conclusions: Where the armamentarium of

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 129 Poster sessions (Friday)

medications are not complete, especially in developing Factor Patients Studies (gc / cor) pos. neg. regional guidelines. countries, certain innovations are necessary. These I: CRP 722 8 (5/3) 6 2 Methods: A prospective audit of patients deemed to results show how certain innovations can help alleviate (3 gc, 3 cor) (2 gc) have agitation and/or delirium across hospital, suffering for many patients with advancing cancer. I: Cytokines 581 11 (9/2) 6 5 community and specialist palliative care unit settings (5 gc, 1 cor) (4gc, 1cor) in the Merseyside and Cheshire cancer network over a FI: Energy 1322 9 (6/3) 5 4 2 month period. Data were collected on the initial PE 1.F449 (3gc, 2 cor) (3gc, 1cor) assessment and drug management of agitation and FI: Protein 557 5 (5/0) 3 (3gc) 2 (2gc) delirium and follow up data over a one week period. The management of cough in palliative care S: Anorexia 774 5 (4/1) 4 (3gc, 1cor) 1 (1cor) We report on the drug doses used. S: Fatigue 219 2 (2/0) 1 (1gc) 1 (1gc) Results: 69 patients were included in the audit. 44 Benson D L1, Browning J2, Howard P3, Klepping G4, Taylor IR: Insulin 172 6 (6/0) 3 (3gc) 3 (3gc) patients died during the study period and the D5, Wee B6 Liverpool Care Pathway for the care of dying patients 1Worcester Royal Hospital, Palliative Medicine, Body Composition (studies: n=8), Resting Energy was used in the majority of cases. The first-line drug Worcester, United Kingdom, 2Oxford University, Expenditure (n=11), eating-regulating hormones used for agitation was midazolam with the median Medicine, Oxford, United Kingdom, 3Royal Berkshire (Leptin/Ghrelin) (n=9), catabolic/anabolic factors (PIF, regular dose used to treat agitation being 10mg over 24 Hospital, Palliative Medicine, Reading, United Testosterone) (n=7), and other (n=6) yielded variable hours (range 2.5-60mg). The median as required dose Kingdom, 4Oxford University, Pharmacy, Oxford, results. Only five papers applied exploratory of midazolam was 2.5mg prn (range 2.5- 10mg prn). United Kingdom, 5High Wickham Hospital, Respiratory, multivariate analysis with few selected and different The most commonly used second-line drug in the High Wickham, United Kingdom, 6Oxford University, factors. management of agitation was levomepromazine and Palliative Medicine, Oxford, United Kingdom Conclusion: For clinical decisions CRP and anorexia the median regular dose was 25mg over 24 hours seem valuable. To classify cachexia a combination of (range 6.25mg-200mg). Other drugs used included Aim: Evidence suggests that chronic cough (>8 weeks) factors is required. Multivariate analysis of these factors clonazepam (range 1-3mg over 24hours), haloperidol is a common, debilitating condition in about 37% of and prospective testing of such a classification system (range 1.5-5mg over 24 hours) and one patient with patients with advanced cancer. In the acute setting, the suggesting distinguishable phenotypes is needed. refractory agitation required phenobarbitone 600mg role of cough is to expel foreign material and secretions, over 24 hours. At 7 days there were no patients whose and to protect the airway. In the chronic setting, symptoms could be described as uncontrolled. coughing often serves no protective function. Instead it PE 1.F451 Conclusion: This audit highlights the fact that reduces quality of life through interference with agitation and delirium are commonly encountered breathing, speaking, sleeping, eating and social activity. Biliary stents in malignant obstructive jaundice: symptoms in Palliative care, especially at the end of In the palliative setting, it may not be possible to Retrospective analysis about outcomes and life. Agitation and delirium can usually be managed identify a reversible cause of chronic cough, and hence complications effectively when small doses of medication are titrated treatment must focus on symptom control often in the against symptoms. form of pharmacotherapy. This poster presents the Marini M C1, Neuenschwander H2, Limoni C3 results of a systematic review of the evidence for 1IOSI, Bellinzona, Switzerland, 2Servizio Cure Palliative - effective management of chronic cough in the IOSI, Ospedale Italiano, Viganello, Switzerland, PE 1.F453 palliative setting. From this review, guidelines are 3Università della Svizzera Italiana, Lugano, Switzerland proposed for the management of cough and Prevalence and severity of fatigue in diferent suggestions for further research are proposed. Most patients with malignant obstructive jaundice have groups of advanced cancer patients Methods: Studies in humans with life-limiting illness inoperable disease at presentation. Miniature and chronic cough were identified using both intraductal endoscope is having an increasingly de Santiago Ruiz A1, Carvajal A2, Centeno C2, Portela M A2, electronic and hand-searching methods. Standard data important role in the non surgical treatment of biliary Ramos L2, San Miguel M T2, Larumbe A2 extraction methods were used to assess the quality of tree diseases and in the palliation of obstructive 1Centro de Cuidados Laguna, Madrid, Spain, 2Clinica each paper and to establish whether it should be jaundice. Incidence rates of complications vary widely, Universidad de Navarra, Pamplona, Spain included in the systematic review. The data from those depending upon the definition adopted, the methods papers accepted into the review was then collated. of data collection, and the case mix. Retrospective Introduction: Fatigue is a common in advanced Results: Although there is literature on the surveys underestimate the frequency of adverse events. cancer patients, and probably one that worsens most management of chronic cough in palliative patients, so However, even prospective surveys are prone to induce the quality of life. far very little high quality evidence has been identified. biases if the modality of data collection does not use Aim: Studying the prevalence and severity of fatigue in Conclusions: It may not be possible to propose strict criteria. Prospective surveys from single referral diferent groups of advanced cancer patients. evidence-based guidelines for the management of centres ensure the highest accuracy, but are unlikely to Methods: The study analyzed two diferent groups of chronic cough in the palliative care setting at the be representative about the frequency and severity of advanced cancer patients from the same hospital. A present time. However, consensus guidelines are unfavourable events. Prospective metacentre studies group from the oncology department, in diferent stages proposed and areas in need of further research are reflect more reliably the effectiveness and safety of the of the disease (43,8% were palliative care patients) (A), identified. procedure. and a group of cancer patients referred to palliative care Aim: This paper presents a review of all patients who consultant team in the first evaluation (B). Inpatients underwent biliary disobstruction with the aim to and outpatients were included. The results were PE 1.F450 identify common characteristics in patients and compared with a third group of advanced cancer indicators for a favourable outcome. patients (35% in palliative care) from a different Inflammation and nutritional intake: Are they Method: We examined 55 charts of patients who died hospital (C) (Salminem, 2008). All patients were really needed to classify cancer cachexia? A from 2002 to 2007 in our institution (Institute of evaluated with the ESAS questionnaire. Severity was systematic literature review Oncology of Southern Switzerland), and that mesured with verbal numerical scale (0-10) of ESAS. underwent biliary stenting through percutaneous The means of each symptom score were calculated and Blum D1, Omlin A1, Baracos V2, Skeidsvoll T3, Tan B4, Hess transhepatic cholangiography or endoscopic retrograde fatigue score was re-grouped into three levels (0: no J1, Fearon K4, Strasser F1, European Palliative Care Research cholangiopancreatography. The stenting procedure in fatigue, 1-3: mild, and 4-10 moderate to severe fatigue). Collaborative EPCRC this sample was performed by different physician or Results: The patients included were 171 (A), 404 (B) 1Cantonal Hospital St. Gallen, Oncological Palliative teams. and 203 (C). Patients from each group were comparable Med, DIM, St. Gallen, Switzerland, 2University of Results: 25 patients underwent more than one except in the primary tumors. Gastrointestinal tumors Alberta, Department of Oncology, Edmonton, Canada, procedure for the failure of their first intervention or predominated in groups A and B, and breast and 3Norwegian University of Science and Technology, relapse of obstruction. Resolution of jaundice was prostate tumors were the most frecuent in group C. The sessions Clinical Department of Cancer Research and Molecular obtained at the first intervention in 41 patients. Overall results showed fatigue in 81% (A), 90% (B), and 86% Medicine, Trondheim, Norway, 4The University of we reported 58 events of infection (6 cases of sepsis and (C); moderate to severe fatigue in 52% (A), 79% (B), and

(Friday) Edinburgh, Royal Infirmary, Clinical and Surgical 4 cases of death for sepsis), 10 occlusions, 4 dislocations 51% (C). Prevalence of moderate to severe fatigue were Sciences, School of Clinical Sciences and Community and some others complications. higher in inpatients 86% (A) and 82% (B) than in

Poster Health, Edinburgh, United Kingdom Conclusions: The operating teams have been outpatients 35% (A) and 76% (B). In group B no confronted with the results of this retrospective significant differences were found in the fatigue scores Aim: To guide clinical decisions or trials in palliative analysis. There is growing agreement that it is of compared tumors. Female patients presented cancer care we systematically reviewed inflammation mandatory to elaborate a strategy in addressing this significant higher scores of fatigue than male patients. (I), reduced food intake (FI), symptoms (S), insulin issue in our institution. Fatigue was the symptom that scored the highest mean resistance (IR), and other factors related to involuntary (A:3,9 [SD2,9], B:5,92 [SD2,9], C:3,8 [SD2,8]). weight loss (wl) in advanced cancer. Conclusions: It could be stated that 80% of patients Methods: Two search strings (cachexia/cancer) were PE 1.F452 receiving palliative care showed moderate to severe applied in MEDLINE, Cochrane, EMBASE, PsycINFO, fatigue. Our results suggest that fatigue is higher among and CinAhl, (1976-2007). Citations, abstracts and Less is more: The management of agitation and hospitalized and female patients. papers were searched by 3 investigators (interrater- delirium In the palliative care setting reliability 93-95%) for inclusion criteria: original work, English/German, for each factor either a group Marley K A1, Finnegan C2, Ahmed F3, Lewis-Jones C1, PE 1.F454 comparison (gc) of defined wl groups or correlations Fountain A4 (cor) inside a wl group. 1St John’s Hospice, Wirral, United Kingdom, 2Royal An observational study of the association Results: Of 14’344 citations, 1275 abstracts and 585 Liverpool University Hospital, Palliative Care Team, between physical and psychological symptoms papers reviewed, 82 papers were included, representing Liverpool, United Kingdom, 3Marie Curie Hospice/ in patients with advanced cancer 6144 cancer patients (40-50% gastrointestinal, 10-20% Marie Curie Institute, Liverpool, United Kingdom, lung). Different definitions of wl compared to pre- 4Halton and St Helens Primary Care Trust, Palliative Webber K1, Davies A N2 illness weight (n=48) or % wl during a specified time Care Team, Liverpool, United Kingdom 1Royal Marsden Hospital, Department of Palliative period (n=34: [10% n=19, 5%: n=15]) were used. The Medicine, Sutton, United Kingdom, 2Royal Marsden results of the Factors I, FI, S, IR include: Aims: Agitation is a common symptom in Palliative Hospital, Sutton, United Kingdom Care, particularly at the end of life. There has been controversy surrounding the use of sedative drugs in Aim: To look for an association between anxiety the dying phase. This audit aimed to measure the and/or depression and “distressing” physical management of agitation and delirium against symptoms in a cohort of palliative care patients at a UK

130 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) oncology centre. treatment of symptoms, this includes the prevention the management of cancer pain. CRF is a multifactorial Methods: This was an observational study conducted and appropriate treatment of a pressure ulcer that are problem and its causes have not been clearly at the Royal Marsden Hospital (Surrey). Patients were directly related to the patients quality of life. This study established till now. It is argued that drugs acting in the asked to complete the Hospital Anxiety and Depression aimed to analyze the state of the art concerning the central nervous system, like opioids, can be responsible Scale (HADS) and the Memorial Symptom Assessment treatment of pressure ulcers in cancer patients and for the amplification of CRF by the inhibition of the Scale Short Form (MSAS-SF: a validated tool that review the scientific literature regarding the treatment reticular system. However, there is almost no research assesses the presence/distress caused by physical and of pressure ulcers. There has been no systematic review on it. Drowsiness and sluggishness are frequently psychological symptoms). of literature in meta databases of MEDLINE, LILACS, observed during opioids administration. Can they be Results: 120 patients completed the study. The mean BDENF, PUBMED, in period of 1997-2007, categorizing accountable for CRF to some extent? age was 61 years, there were 65 (54%) women, and the the articles as the strength of evidence for trials of the Aim: This study focuses on the probable relationship range of cancer diagnoses was representative of Oxford Center for Evidence - based Medicine. The between opioids and CRF in terminal hospice cancer referrals to the palliative care service. sample of the study consisted of 11 articles. The patients. 15% of patients met the criteria for anxiety using the formation of pressure ulcers by cancer in some patients, Methods: 150 terminal cancer patients (68 male and HADS. There was a correlation between the anxiety especially those who are in the terminal stage of illness, 86 female) being under hospice care were examined score with the HADS and the score on the should not be seen as a failure of care, but as a result of with VAS- fatigue. The information on the psychological subscale of the MSAS-SF (P > 0.001), and advancing disease causing physical deterioration, thus, pharmacological treatment was collected. The whole the overall MSAS-SF score (P = 0.037). However, there the formation of ulcers pressure may be inevitable. The group was divided into 3 subgroups (without opioid, was not a correlation between the anxiety score with healing of ulcers pressure on patients with cancer with tramadol and with strong opioid - morphine, the HADS and the physical subscale of the MSAS-SF (P shows no significant difference with respect to patients fentanyl or morphine plus fentanyl) Afterwards, the = 0.18). 25% of patients met the criteria for depression without cancer, however individuals with neoplastic correlation between the level of fatigue and taken using the HADS. There was a correlation between the disease have more risk factors and the formation of opioid was performed by means of using the depression score with the HADS and the score on the these lesions tend. This study does not support a multivariate analysis ANOVA. psychological subscale of the MSAS-SF (P = 0.014), the decision to guide the work in treatment of pressure Results: Mean intensity of CRF in none, tramadol and physical subscale of the MSAS-SF (P = 0.046), and the ulcers in cancer patients, but the knowledge gained in strong opioid group were 5,4; 6,2 and 5,9 respectively. overall MSAS-SF score (P = 0.015). this study is valid, it reveals the paucity of works on the The differences in the level of fatigue between the Conclusions: This study demonstrates an association proposed topic. Therefore, the development of research groups were non- significant. It is vital to mention that between distressing physical symptoms and the that can fill the existing gap in scientific knowledge the comparison of CRF levels in groups without opioid presence of depression (but not anxiety) in patients concerning the treatment of pressure ulcers in cancer and with tramadol has the border significance at p 0,07. with advanced cancer. These results have implications patients is needed. Conclusion: The influence of opioids on the level of for clinical practice: patients with depression should be CRF does not seem to be as important a factor as it was assessed for “distressing” physical symptoms, which previously assumed. should be actively managed in addition to PE 1.F457 psychological and pharmacological interventions for the depression. Administration of subcutaneous potassium PE 1.F459 infusion in advanced cancer patients Microbiological profile of a palliative care unit: PE 1.F455 Burton-MacLeod S1, Bielech M2, de Kock I1, Mirhosseini M1, The multidrug resistance concern Hager L2, Faily J3 The utilization of laxatives in a palliative care 1University of Alberta, Division of Palliative Care Barbosa L A1, Santos P R N2, Azevedo E F2 unit associated with pain control Medicine, Dept. of Oncology, Edmonton, Canada, 1INCa - Instituto Nacional de Câncer, Hospital do 2Catholic Health Services, Grey Nuns Hospital Câncer IV, Divisão Técnico Científico, Rio de Janeiro, Urago C P1, Barbosa L A2, Barcelos F C1, Lima S G G1 Pharmacy and Regional Palliative Care Program, Brazil, 2INCa - Instituto Nacional de Câncer, Hospital do 1INCa - Instituto Nacional de Câncer, Hospital do Edmonton, Canada, 3Alberta Health Services, Regional Câncer IV, Comissão de Controle de Infecção Câncer IV, Serviço de Farmácia, Rio de Janeiro, Brazil, Palliative Care Program, Edmonton, Alberta, Canada Hospitalar, Rio de Janeiro, Brazil 2INCa - Instituto Nacional de Câncer, Hospital do Câncer IV, Divisão Técnico Científico, Rio de Janeiro, Aim: Hypokalemia is commonly encountered across all Background: The role of the Hospital Infection Brazil medical settings, including Palliative Care. Depending Control Committee (HICC) in palliative care units is on the goals of care and the clinical situation, under structuring process and there are few studies in Constipation is one of the most frequently observed hypokalemia is treated to prevent serious the literature about its role. With regard to the side effects regarding the drug utilization for pain in symptomatology. To date there have been no studies to multidrug resistance germs there are few data in the cancer patients, reflecting negatively on their quality of investigate the use of potassium choride given literature and there is not consensus on whether or not life. Studies show that, after the opioids analgesics, the subcutaneously as treatment of hypokalemia in the to intervene in the control of these germs, particularly laxative represent the second most prescribed class of advanced cancer population. the MRSA. drugs in palliative care. It occurs in approximately 40% There are a few anecdotal literature reports of the use of Objectives: To present the results obtained by HICC in of patients referred for Palliative Care Services and 90% potassium chloride via hypodermoclysis prior to 1982. a palliative care unit about the incidence of multidrug of those treated with opioids. The majority of subsequent data mentions the resistance germs. The purpose of this study is to assess the profile of the subcutaneous use of potassium only as secondary Methodology: A prospective study, quantitative data use of laxatives in hospitalized patients, followed up in outcome in a mixed population. Only one study by collected from January to September 2008. The forms outpatient and home visits by a multidisciplinary team Schen and Arieli looked at the use of potassium were filled with the following data: characteristics of in a palliative care unit in Brazil. For both, was made a chloride via subcutaneous infusion, but this was in infectious episodes, and microbiological culture results retrospective analysis of medical prescriptions in a elderly, non-cancer patients. Although our Regional and sensitivity. For the calculation of the multidrug given period. The laxatives standardized at the Palliative Care Program has accumulated several years resistance rate of was taken into consideration the institution are pure mineral oil, glycerin suppository of experience with the administration of potassium via organism isolated in cultures performed in the unit. 95%, and 12% glycerin clister and bisacodyl 5mg. These clysis and considers it standard practice, it has not been Results: The profile of resistance to antibiotics has were evaluated on their frequency of use, sex and extensively and independently investigated. We are shown, in an average year, multidrug resistance association with opioid use. The results show that 40% reporting on the usability and effectiveness of this microorganisms from 13,8% in a total of 290 positive of estimated prescription contained laxatives, being route of potassium administration in advanced cancer cultures performed, and the incidence to: MRSA 3,8%, prescribed in the proportion of 49% to 51% for men patients. ESBL 7,2%, and other Gram negative bacteria 2,4%. and women. The association between laxatives and Methods: We conducted a chart review of all patients There were no reports of MRSA infections, only opiates was observed in 85% of the prescriptions admitted to a tertiary palliative care unit and a hospice colonizations, and the main site was the nasal mucosa. sessions analyzed, and the results were equivalent to those unit over a one-year period between January and As producers of ESBL, the main site observed was urine, available in literature. The mineral oil was the most December, 2006. We collected data pertaining to the where both colonizations as infectious process (Friday) prescribed laxative in three segments analyzed provision of subcutaneous administration of themselves, with clinical manifestations. The most

(hospital, clinic and home visits) followed by its potassium. positive cultures were obtained from wards inpatients, Poster association with the glycerin suppository. With this Results: We will describe the use of subcutaneous but considerable samples were obtained from study, we intend to develop a protocol for treatment of administration of potassium in terms of frequency of transferred patients, specially for MRSA that represented constipation and monitor the use of laxatives in the administration, dose, tolerability and effect on serum 63,6%. unit, especially when associated with the use of opioids potassium values. Conclusion: Even in a Palliative Care unit, the for control of cancer pain. Conclusion: This retrospective study provides presence of multidrug resistance germs was high. The previously unrecorded information to support the incidence rates of MRSA were similar to that found in subcutaneous administration of potassium via clysis, a the literature, however the incidence of Gram negative PE 1.F456 helpful method for the correction of hypokalemia in bacteria and the presence of frequent clinical the advanced cancer population. manifestations (infection) and the incidence of MRSA Pressure ulcer in palliative care: Understanding from transferred patients represents a issue in palliative the issue care that needs a special concern. PE 1.F458 Bolzan M1, Barbosa L A2 1INCa - Instituto Nacional de Câncer, Hospital do Cancer related fatigue and opioids Câncer IV, Ambulatório, Rio de Janeiro, Brazil, 2INCa - Instituto Nacional de Câncer, Hospital do Câncer IV, Buss T1, Osowicka M1, Modlinska A1, Janiszewska J1, Divisão Técnico Científico, Rio de Janeiro, Brazil Lichodziejewska-Niemierko M1, Wisniewski P2 1Medical University of Gdansk, Department of Palliative Cancer is a disease that induces systemic changes, such Medicine, Gdansk, Poland, 2Medical University of as hypermetabolism, with energy expenditure at rest, Gdansk, Department of Endocrinology and Internal depletion of nutrients and protein, which leads the Diseases, Gdansk, Poland patient to weight loss and cachexia, raising the risk of forming a pressure ulcer. The nurses objectives in Introduction: Cancer related fatigue (CRF) is one of palliative care unit´s should be to promote comfort and the most bothersome symptoms in terminal cancer dignity for patients, through actions in the control and patients under hospice care. Opioids are widely used in

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 131 Poster sessions (Friday)

PE 1.F460 transit constipation in the general population is about reactions, beside the intensity, of symptoms is tolerable for palliative care patients. Furthermore, the important. Associations between symptoms and Descriptive study of decision making by study aims to explore whether there is a relationship functions reported in the EORTC QLQ C-30 and palliative care, aged care, aged care psychiatry, between slow tranist and people´s reports of emotional reactions and quality of life in relation to and oncology nurses caring for confused constipation. time of survival will be further explored and discussed. patients in the inpatient care setting Methods: Eligible participants will receive oral markers on three consecutive days and two subsequent Agar M R1, Draper B2, Phillips P3, Griffiths R4, Harlum J5, abdominal x-rays. Using a validated formula, total and PE 1.F464 Sanderson C1, Currow D1 segmental colonic times will be calculated. Tranist 1Flinders University, Dept of Palliative and Supportive times will be compared with “normal” populations and Nursing intervention to control malodorous in Services, Adelaide, Australia, 2University of New South considered with the symptoms expressed by malignant cutaneous wound Wales, Academic Department of Old Age Psychiatry, particpants. The tolerability and acceptability of this Sydney, Australia, 3Flinders University, Dept of approach will be considered. Bolzan M d F1, dos Santos Nunes M d G1, Vinhas F R1 Medicine, Adelaide, Australia, 4University of Western Results: Preliminary data from the first participants 1National Cancer Institute, Outpatient, Rio de Janeiro, Sydney, Centre for Applied Nursing Research, Sydney, will be presented. Brazil Australia, 5Sydney Southwest Area Health Service, Palliative Care, Sydney, Australia The wounds are formed by the tumor cells from tumor PE 1.F462 infiltration into the structures of skin, due to Introduction: Delirium management impacts uncontrolled cell proliferation that occurs break the significantly on palliative care nursing practice. The Involuntary movements in terminally ill patients integrity of the skin leading to the formation of the aim of this study was to understand and compare - Diagnosis and treatment wound. These are classified as: ulcerative malignant assessment, management, and challenges faced by wounds, malignant fungus wounds, malignant fungus nurses from 4 clinical areas when caring for a confused Lorenzl S1 ulcerated wounds. As for the staging in stage 1, 1N, 2, 3 patient. 1LMU Munich, Palliative Medicine, Munich, Germany and 4. The main complications that may be present in Methods: Inpatient nurses in palliative care, aged care, these wounds are: malodorous, itching, bleeding, pain, aged care psychiatry and oncology participated in semi- Aim: Terminally ill patients sometimes present with exudate and necrosis. The malodorous is said as the structured interviews exploring views about symptoms, involuntary movements. The most common most distressing symptom for patients. The presence of causes of distress, aspects requiring management, movements are myoclonic jerks associated with opiod malodorous causes the patient remember to use disease reversibility, and intervention choices. The interviews overdosing. However, there is a variety of involuntary and may lead him to depression and social isolation, were taped and transcribed. Purposive sampling was movements which is often underdiagnosed. Diagnosis and other psychosocial problems, causing deterioration used and interviews conducted until thematic is of some importance since the underlying metabolic of the quality of life. The purpose of this study is to saturation reached. A thematic content analysis was or physiologic changes might be treatable. analyze through the clinical indicators of quality in the performed (three researchers coding transcripts Materials and methods: We report on documented period from March to August 2008, the intervention of independently with confirmation by participants). (some also video-documented) involuntary movements nursing in controlling the malodorous of malignant Results: 40 nurses participated (n=10 for clinical area). of patients at our palliatve care unit from October 2006 cutaneous wound, according to institutional protocol Delirium was defined as cognitive or behavioural until March 2009. in the sector of an outpatient hospital specializing in disturbance, often with likely precipitants included. Results: The most often documented involuntary palliative care - Brazil. Data are collected in separate Varied views existed about delirium reversibility, and movements are myoclonic jerks associated with opoid instrument and evaluated quantitatively, these are assessment needed. The significant distress experienced overdosing. However, these jerks might also be seen in presented in tables and graphs. In this period there by patients, families and health professionals was cervical spinal cord lesions and as a sign of progressive were 119 Malignant cutaneous wound with described. Familiarity and views about pharmacological muscle wasting when patients move their extremities. malodorous. Given the prevalent locations: head and strategies differed. A common view was intervention Furthermore, myoclonic movements are common in neck, breast, bone and connective tissue, gynecological was not needed if distress and safety were not concerns. patients with renal insufficiency as twitched convulsive and anal. Of these 55 were not reviewed, due to the Many nurses felt strongly one on one nursing was an syndrom. Only one patient showed the painful-leg- death of the patient, change of type of assistance or do effective strategy for care (ability to use activity, talking moving-toe-syndrom as a result of an illiacal abscess. not return to nursing consultation; 38 had effective to patient, and attention to the environment) however Myoclonia can be very subtile as only the ankle of the control of the malodorous; 09 worsen the malodorous limited by budget or resource restraints. A major mouth is moving. In the face we sometimes see and 06 remained with grade 1, 09 with malodorous challenge was trying to balance care for the confused patients with chin and in the mouth palatal myoclonia degree 2 and 02 with the malodorous grade 3. We patient without jeopardising care for other patients. which occurs usually in the very last days of life. concluded that the interventions of nursing to control Most nurses felt confident in managing confusion Oculomotor abnormalities like epileptic nystagmus is the malodorous in wounds tumor were effective, informed by clinical experience. common in non-convulsive epileptic seizures. despite the difficulties encountered in this control. Discussion: The limited symptom domains described In case treatment might be necessary, useful options Contributing to a better quality of life of patients in supports literature regarding delirium under-detection. include midazolam, valproic acid and levetiracetam. palliative care in this unit. This study supports that delirium is a distressing Conclusion: experience. Hands on approach to nursing care was 1. Involuntary movements might be more common in highly valued yet difficult to achieve, with quite varied terminally ill patients than suspected. PE 1.F465 medication use mainly for distress or safety. 2. An underlying metabolic or physiologic change must be evaluated since it might be treatable. Symptom prevalence in cancer patients referred to the first specialist palliative care clinic in PE 1.F461 Egypt PE 1.F463 Pilot study to examine the use of radio-opaque Alsirafy S A1, El Mesidy S M1, Abou-Elela E N1, El Faramawy markers to measure colonic tranist times in Emotional reactions of symptoms and functions Y I1 palliative care patients among patients with advanced cancer in the end 1Kasr Al-Aini School of Medicine, Cairo University, of life Palliative Care Medicine Unit, Clinical Oncology Clark K J1, Lam L2, Bester L3, Macauley P4, Chye R4, Currow Department, Cairo, Egypt D5 Lundh Hagelin C1 1Cunningham Centre for Palliative Care, The Univeristy 1Stockholms Sjukhem Foundation and Karolinska Aim: Research is essential to establish and develop of Notre Dame Australia, Sydney, Australia, 2University Institutet, Dept. of Oncology and Pathology, palliative care in different cultures and settings, sessions of Notre Dame Australia, School of Medicine, Sydney, Stockholm, Sweden whatever the resources. Like other developing Australia, 3St Vincents Hospital, Interventional countries, cancer patients in Egypt frequently present in

(Friday) Radiology, Sydney, Australia, 4Sacred Heart Palliative Background: Experiences of symptoms among an advanced stage. Although the only realistic Care Service; St Vincent’s Hospital, Sydney, Australia, patients with advanced cancer are often distressing and treatment approach for these patients is palliative care, 5

Poster Flinders, Adelaide, Australia affect quality of life negatively. it is still in the very early stage of development in Egypt. Aim: The present study was performed to investigate In this brief report, we present the preliminary results Aims: In the palliative care population, constipation is the association between functional status and of a study aiming at estimating the physical symptoms a significant problem, negatively impacting symptom symptoms with emotional reactions and quality of life burden in cancer patients referred to the first hospital- control and quality of life. In addition to the among patients with advanced cancer in the palliative based specialist palliative care clinic in Egypt. individual´s experiences, constipation has health care care trajectory. Methods: A retrospective review of the medical records cost implications with constipated patients increasing Method: This cross-sectional study used the EORTC of cancer patients referred to a palliative care clinic nursing time and likelihood of hospitalizations. QLQ C-30 to measure patients self-reported functional during the first two months since its opening. The There numerous potential and proven contributing status, symptoms and quality of life. physical symptoms reported by cancer patients during factors, that have resulted in prevalence’s of up to 50% Results: 278 patients with a mean age of 67 years their first visit to the palliative care clinic are described. of people at the time of referral to palliative care completed the questionnaire. 62% were female and Results: During the study period, the palliative care services, with this figure increasing to 90% of people median time of survival was 43 days. Preliminary clinic received 29 new cancer referrals. Their median admitted to inpatient palliative care units described as results indicate a difference in the association between age was 52 years (range, 17-73) and 45% were males. constipated. the investigated functions and symptoms and the The most common primary cancer was gastrointestinal Within the functionally constipated population, slow association with emotional reactions and with quality (24%) and 72% of patients had distant metastases. transit of matter through the colon is identified as a of life. Social functioning and fatigue seems to be most Twenty physical symptoms were identified and the major pathology. Likewise, numerous reasons for associated with patients perceived quality of life median number of symptoms per patients was three palliative care patients to have slow transit exist (correlation coefficients of 0.53 and 0.31 for patients (range 1-7) and about one third had at least five including medications, increasing debility, poor having <30 days to live). Cognitive functioning and symptoms. Pain was the most common symptom and appetite, metabolic abnormalities and paraneoplastic sleep disturbance seems to be most associated with occurred in 90% of patients followed by weakness in phenomena, but only one previous study has examined emotional reactions in terms of being tense, feeling 45%, constipation in 38% and vomiting in 24%. this. This is contrast to other populations where irritable, depressed and worried (correlation Conclusion: Although the number of patients investigations of this problem are commonplace. coefficients 0.48 and 0.48 for patients having <30 days included was small, the results give an idea about the This study aims to investigate whether the use of oral to live). high prevalence of physical suffering in Egyptian radio-opaque markers and plain abdominal x-rays, a Conclusion: As symptoms among patients with advanced cancer patients. Further prospective studies commonly used approach to diagnosis slow colonic advanced cancer are highly prevalent, the knowledge using validated Arabic assessment tools are warranted to

132 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Friday) confirm our results and to explore other aspects of opio?ds (but no patients needed Naloxone, even with Of the 136 patients who were referred for other suffering. There is an urgent need to develop and doses>100mg/day). indications, 26 patients were diagnosed with spread palliative care models suitable for the Egyptian Conclusion: Midazolam is efficient in cases of elderly psychological/psychiatric problems also. Half of them culture in order to improve the quality of life of patients with fear. Gradual use necessitates ethical were diagnosed before referral. Three of them had an advanced cancer patients and their families. references and strict compliance with the anxiety or depressive disorder. The other 13 patients recommendations of SFAP, assistance of a decision had psychological/psychiatric problems diagnosed by making tool (DDE), procedures in place to evaluate our team. PE 1.F466 efficient and non-excessive dosages, permanent Of the 47 patients seen by our team with these personal contact with family members to explain problems, 23 had problems with acceptation and Radiation therapy in malignant spinal cord medical strategies. coping. A problem in the doctor-patient relationship compression. What is the current knowledge in was found in 12 patients. this field of palliative medicine? A literature Diagnostics of anxiety and depressive disorders are review PE 1.F468 rarely a reason for referral to our palliative care team. However, patients with coping problems and problems Løhre E T1, Lund J-Å1, Kaasa S1 Facial burns in connection with oxygen in the doctor-patient relationship are frequently seen. 1St. Olavs Hospital, Oncological Department, insufflation in home-based palliative care Maybe doctors do not recognise anxiety and depressive Trondheim, Norway disorders, or if they consider it, patients are referred to Thöns M1, Zenz M2 another discipline. Although we are aware of anxiety Background: Malignant spinal cord compression 1Praxis für Palliativmedizin im Palliativnetz Bochum, and depressive disorders, our team might miss this (MSCC) in patients with short life expectancy is most Bochum, Germany, 2Klinik für Anästhesiologie, diagnosis. frequently treated with radiotherapy and/or Intensiv-, Palliativ- und Schmerzmedizin, BG-Kliniken corticosteroids. Hypofractionation is proven efficient in Bergmannsheil, Bochum, Germany metastatic bone pain and lung cancer, but the level of PE 1.F470 evidence for hypofractionation in MSCC is limited. We report about a 48 year old patient receiving Materials and methods: Searches were performed in specialized out-patient palliative care with diagnosis of The influence of morphine and tramadol on PubMed, EMBASE and the Cochrane Library for all SCBC. He was suffering from pain and repetitive cancer patients’ cognitive functions relevant articles. They were systematically assessed and dyspnoea. It had been possible to secure reasonable categorized as follow: Systematic reviews, randomized symtom relief by treating him with morphine and Osowicka M1, Majkowicz M2, De Walden-Galuszko K2 controlled trials (RCT), prospective non-randomized lorazepam over a long period. 1Medical University of Gdansk, Department of Palliative trials and retrospective studies. At oxygen saturation of 93-98% an oncologist Care, Gdansk, Poland, 2Medical University of Gdansk, Results: One RCT was identified, comparing prescribed an oxygen concentrator. Despite detailed Gdansk, Poland hypofractionation (8 Gy x 2) with a more fractionated information about the risks, given by a palliative regimen. In this study no differences in ambulation, doctor, the patient smoked while inhaling O2, which Background: Tramadol and morphine are used in survival or toxicity were detected. The five prospective caused a sudden flame to burn the right side of his face pain treatment . In spite of common use of these drugs, non-randomized studies identified revealed no causing second degree burns. we still don’t exactly know how they influence on differences in post treatment motor function. Of 17 Making use of the mobile phone service MMS we were human cognition. retrospective studies the largest included 1304 patients, given advice by the centre for serious burn injuries and Aims: The aim of our study was to assess: treated with five different regimens ranging from 8 Gyx1 were able to continue treatment at home. Despite - The correlation between tramadol or morphine, and to 2Gyx20, and found similar post treatment ambulatory secondary infection the burns healed within four weeks cognitive functions of cancer patients status. A Cochrane review based upon the only published without leaving scars using Fusidin acid ointment. - The influence of the dosage of drugs and their blood RCT concluded that short courses of radiotherapy appear Discussion: While the use of oxygen in emergency concentration on cognitive functions to be justified in poor prognostic patients. cases is valued highly, its use for palliative care is - The correlation between general patient state (ECOG) Discussion: Hypofractionation has proven efficacy in increasingly being questioned. It is undisputed that a and cognitive functions. the treatment of metastatic bone pain, and the current patient can experience physiologically justified relief of Material and methods: People, who were taken knowledge on the pathofysiology of MSCC can indicate dyspnoea if oxygen saturation in his blood is reduced under the consideration, had to be in advanced state of that hypofractionation might be efficient in this (SO2<92 %). cancer disease, in good mental condition (Mini- Mental condition as well. Short course radiotherapy regimens In most cases dyspnoea is caused by hypercapnia. state), loss of treatment with papaverine and codeine are considered positive both for the patients and the Giving oxygen can only - if at all - help psychologically. during four weeks before the investigation, psychical society. The disadvantages are not to be ignored; these can be status (ECOG scale less than four). Conclusion: The level of evidence as to which dependency on medical technology (tube, oxygen Paper (BFI, HADS-M,VAS ) and computer tests(Cognitive radiation schedules are the most effective is low. Short concentrator), drying up of the mucous membrane, Drug Research) has been used. We’ve examined courses of radiotherapy appear to be justified in poor irritation caused by noise, and disturbed patients twice: before and after taking a drug. Results prognostic patients, but there is a need for large communication due to facial masks. Recently it was has been analysed by statistic program - STATISTICA Pl. randomized trials in non-selected patient cohorts shown that dyspnoea can be treated much more Results: 93 patients of both sex have been examined. before any final recommendations can be given. successfully by the application of benzodiazepines or Patients treating with tramadol improve verbal and opioids. spatial memory. They make worsen in tests assessing Conclusion: The application of oxygen for the attention speed and quality. Comparing patients treated PE 1.F467 treatment of dyspnoea rarely makes sense and, as in the with morphine worsen in short term memory, long cited case of nicotine abuse, it can cause severe facial term memory and attention tests. Use of Midazolam with elderly patients at the burns. In the case of care at home advice from a burns Conclusions: Morphine and tramadol influence on end of life: A study of 20 cases in a palliative care specialist can be obtained by means of new technical some cognitive function. Morphine influences more unit (10 patients>100mg/day) facilities (mobile phone - MMS). than tramadol on cognitive functions in cancer It should be compulsory to put a large warning sign on patients. General state (ECOG scale)correlates with Knorreck F1, Gay G2, Tribout D1, Sales E1, Gomas J-M1 oxygen concentrators “No Smoking”. cognitive impairment. 1Hôpital Rossini Sainte Périne, CISP, Paris, France, 2Hôpital Saint Camille EMSP, Bry sur Marne, France PE 1.F469 PE 1.F471 Introduction: Pain and intense fear are characteristic for advanced cancer even with elderly patients. This Are questions about diagnostics and treatment Effectiveness and tolerability of senna tea retrospective study analyses such cases with intravenous of psychiatric disorders in patients with combined with lactulose syrup in patients with sessions (IV) or subcutaneous (SC) dose of more than 50 mg/day palliative care needs a reason to consult the intestinal constipation of Midazolam in the terminal phase. palliative care team in a university hospital in (Friday) Method: Ex-post analysis of 20 elderly patients the Netherlands? Burburan S1, Fialho L1 1

received consecutively, with Midazolam administered National Cancer Institute of Brazil (INCA), Cancer Poster for intense fear or upon request for linked sleep. Geerling J I1, Reyners A K L1, van Minnen C A1, van Hospital IV - Palliative Care Unit, Rio de Janeiro, Brazil Results: Average age 72 years [63-92], of which 7 > 80 Leeuwen J T M1, Gol J1 years. Pain is being self evaluated or hetero-evaluated 1University Medical Center Groningen, Groningen, Aims: Constipation is one of the most common with the ECS behaviouristic scale. Fear and request for Netherlands problems in hospital inpatients receiving palliative linked sleep is being self or hetero-evaluated. Average care, and can cause extreme suffering and discomfort. length of stay in the service: 41 days, of which 18 with Within the UMCG, a multidisciplinary palliative care The combination of a stimulant and a softener laxative Midazolam. team was set up in 2006. Patients are seen on a has been recommended for management of Midazolam dosage always is progressive and varies consultation base. constipation in palliative care. The objective of this between 5mg/day on the beginning and 240 mg/day in Previous studies in palliative care patients showed that study was to evaluate the effects and tolerability of final phases [5-240 mg]. anxiety and depressive disorders are prevalent but senna tea combined with lactulose syrup administered For 10 patients (4 men, 6 women) the dosage is higher under diagnosed. orally and via gastrostomy and enteral tubes in than 100mg/day IV or SC: for this subgroup were To study whether doctors who referred patients to our terminally ill cancer patients with intestinal discovered: 1 psychic decompensation, 5 increased team were aware of psychiatric problems of their constipation. dosages until final phase, 4 sedation. patients. Methods: 15 hospital inpatients were treated with Analysis: Important doses are sometimes required to A retrospective study of patients referred to the senna tea (1g /200mL) and lactulose syrup (20g /30mL) induce sleep. Some patients (3/9 who received >100 palliative care team from October 2006 to October once daily. The dose was adjusted when required and a mg) fight against sleep while having requested it. 2008. diary was kept to monitor dose, side-effects, stool Sedation continues to be a complex question, In this period 170 new patients have been referred. In frequency and consistency, and other symptoms. Rectal psychological and ethical. 34 of the patients a psychological or psychiatric treatments (suppositories or enemas) were 7 patients were pronounced respiratory insufficient problem was reason for referral. Of these 34 patients 21 implemented when needed. (SaO2<85), and fear was better after Midazolam without had these problems. The remaining 13 patients were Results: Laxatives administered via gastrostomy and clinical distress. It request a rigorous surveillance, the adapting from recently given bad news. The 21 patients enteral tubes showed no dissimilar effects compared to more IV way is very efficient and fast, but shows risk of were assessed by a psychiatrist or social worker. Only 3 those orally given. The first bowel motion occurred at a anaesthesia (no patient needed Anexate*), and of them were diagnosed with a anxiety or depressive median of two days after the implementation of Midazolam may increase the respiratory depression of disorder. laxative treatment. 11(73%) patients showed

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 133 Poster sessions (Friday)

Improvement in stool consistency and frequency (P < 0.01) and the number of stools per week was also significantly higher (P < 0.01). Individuals presented bowel movements every 2 days with normal stools (types 3 or 4 accordingly to Bristol Stool Scale). In 1 (7%) patient the occurrence of flatulence required lactulose to be discontinued and paraffin oil was initiated instead. No other side effects were detected and tolerability was good for all subjects. Patients described the senna infusion combined with lactulose as “sweet”, “enjoyable” and “tasty”. Conclusion: The combination of senna tea with lactulose syrup seems to be helpful in the management of constipation. Furthermore, its pleasant taste may be a suitable way to increase its acceptability and encourage fluid ingestion in palliative care patients with intestinal constipation.

PE 1.F472

A methodological exploration of symptom clusters in patients with inoperable lung cancer

Henoch I1, Ploner A2, Tishelman C3 1Karolinska Institutet, Institution of Learning, Informatics, Management and Ethics, Medical Management Centre, Bräcke Diakoni Foundation, Research Unit, Göteborg, Sweden, 2Karolinska Institutet, Department of Medical Epidemiology and Biostatistics, Stockholm, Sweden, 3Karolinska Institutet, Institution of Learning, Informatics, Management and Ethics, Medical Management Centre, Stockholm, Stockholms Sjukhem Foundation, Research & Development Unit/Palliative Care, Stockholm, Schweden and, University of Manchester, School of Nursing, Midwifery and Social Work, Manchester, United Kingdom

Aims: The objectives of the study were to inductively explore the existence of symptom clusters among a homogenous group of patients with inoperable lung cancer close to diagnosis, and to explore if the resulting symptom clusters are consistent when examined with different instruments and analytical methods. Study design and methods: A cross-sectional study was conducted of 400 patients newly diagnosed with lung. Forty-eight percent were women. Data was analyzed from two questionnaires, European Organization for Research and Treatment of Cancer’s QLQ-C30 and LC13; and the Symptom Distress Scale. Items in the instruments were adapted to increase their correspondence. Symptom clusters was analyzed with Pearson’s correlations, cluster analysis, factor analysis and Cronbach’s alphas. Results: Three clusters were found to be notably consistent across instruments and analyses: first, a cluster consisting of pain, nausea, bowel problems, appetite loss and fatigue; second, a mood cluster consisting of mood, outlook, concentration and insomnia; and third, a respiratory cluster consisting of breathing and cough, with fatigue and appetite loss closely related to more than one cluster in several analysis. Conclusions: We found consistent symptom clusters for a large cohort of lung cancer patients at a comparable point in their cancer trajectory, across different measurement tools and statistical methods. This is important, as the relevance of symptom cluster research is questionable if there is a lack of consistency sessions across data collection and analysis approaches. Fatigue and appetite loss were related to more than one cluster,

(Friday) indicating the need for further study of these symptoms, with consideration of clinical and not only

Poster statistical features. Acknowledgement: The Swedish National Research Council, The Swedish Cancer Society, The Swedish Heart-Lung Foundation, The Swedish Foundation for Health Care Sciences and Allergy Research, and the Center for Health Care Sciences at the Karolinska Institutet, Coop Sweden.

134 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

Poster sessions (Saturday) sessions (Saturday) Poster

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 135 Poster sessions (Saturday)

PE 2.S1 PE 2.S4 internal consistency of 0.88. Conclusion: The SDM-PICS is a short, reliable and Evoked brain potentials connected with tactile Validation of the Danish Barriers Questionnaire valid instrument measuring the patient perceived sensations, skin and joint pain as the chance of II quality of the communication with his/her health care palliative care objective assessment provider in the context of cancer pain. Jacobsen R1, Møldrup C1, Christrup L1, Sjøgren P2, Hansen Tsirulnikov E M1, Titkov E S2, Oganesyan G A2, Smirnova A O B3 I2 1University of Copenhagen, Department of PE 2.S6 1I.M.Sechenov Institute of Evolutionary Physiology and Pharmacology and Pharmacotherapy, Copenhagen, Biochemistry, Russian Academy of Sciences, Laboratory Denmark, 2Rigshospitalet, The Multidisciplinary Pain The project of a “clinical nutritional of Comparative Physiology of Sensory Systems, St.- Centre, Copenhagen, Denmark, 3Holbæk County commission” in a hospital center (Oncology Petersburg, Russian Federation, 2I.M. Sechenov Institute Hospital, Pain Clinic, Holbæk, Denmark Institute and General Hospital) in Southern of Evolutionary Physiology and Biochemistry, Russian Switzerland Academy of Sciences, St.-Petersburg, Russian Federation Aims: The Barriers Questionnaire-II (DBQ-II) is a revised tool assessing cancer patients’ concerns about Sanna P1, Walther-Veri S1, Neuenschwander H1 Aims: Objective characteristics of pain is an important pain management. The objective of this study was to 1Oncology Institute of Southern Switzerland (IOSI), problem for investigation. We examined 17 volunteers examine construct validity and internal consistency of Palliative Care Service and Unit on behalf of the in poststimulus skin and joint pain induced by focused the Danish version of the BQ-II (DBQ-II). Clinical Nutritional Commission ORBV-IOSI, ultrasound. Pain threshold were measured Methods: Cancer patients for the study were recruited Bellinzona, Switzerland psychophysically, brain potentials were evaluated from specialised pain management facilities. Thirty- electroencephalographycally and they both were three patients responded to the DBQ-II, the Hospital In the management of cancer and other chronic compared. Anxiety and Depression Scale (HADS), the Brief Pain diseases, delivery and intake of an adequate nutrition Methods: 1 ms and 5 ms impulses of 2.5 MHz focused Inventory (BPI) Pain Severity scale, and demographic (both quantitative and qualitative) may result in ultrasound were used. Ultrasound stimuli were directed and disease-related questions. Statistical analysis was improved outcomes (quality of life, response to medical in the skin of the finger tip and into the finger joint performed with SPSS 16.00 and included: factor treatments,…), in a reduction of disease and treatment- being repeated from three to dozens times. analysis of the DBQ-II, correlation analysis between the related complications as well as in favourable effects on Results: Evoked by ultrasound electrical brain DBQ-II and the HADS and the BPI, assessment of shorter hospital stays and medical costs. potentials connected to skin and joint poststimulus associations between the DBQ-II and demographic We identified consistent nutritional concerns and pain (PP) differed from evoked tactile k-complexes, in characteristics, and assessment of Chronbach alpha of insufficient attention to this issue in our institutions. In the increase of the third amplitude oscillation and in the DBQ-II. September 2007 we developed the idea of creating a the time of oscillation reversal to the isoelectric level. Results: A factor analysis of the DBQ-II resulted in five “Nutritional Commission” at the Oncology Institute of Brain potentials did not depend on the kind of pain factors. Factor one, Communication, consisted of five Southern Switzerland and at the Regional Hospital of (skin or joint PP) as well as on the place of PP, for items addressing the concerns that reports of pain Bellinzona, in order to address this topic, clearly example on the finger or on the cheek skin and allowed distract the physician from treating the cancer and that recognized as a priority from many colleagues. We to evaluate pain intensity and duration. “good” patients do not complain. Factor two, Fatalism, started with a sensitizing campaign among the personal Conclusions: Objective measure of PP intensity and consisted of three items addressing fatalistic beliefs of the different departments of the two institutions. A duration was shown in comparison with tactile regarding cancer pain management. Factor three, nutritional screening at hospital admission (Nutritional sensation and pain. There was no difference of PP Immune System, consisted of three items addressing Risk Assessment Form), a continuous daily follow up of potentials for poststimulus skin and joint pain. the belief that pain medications harm the immune the food intake and dietary consultations were system. Factor four, Monitor, consisted of three items, delivered in three “pilot units” (Palliative Care, addressing the fear that pain medicine masks changes Radiation Oncology and Internal Medicine). Particular PE 2.S3 in one’s body. Factor five, Addiction, consisted of two measures were considered according to the specific items addressing the fear of becoming addicted to pain nutritional problems (further dietary consultancy and The validation of the French Brief Edinburgh medication. Items related to medication side effects and follow up, parenteral nutrition support, percutaneous Depression Scale (BEDS) tolerance were analysed separately. The DBQ-II total endoscopic gastrostomy,…). Along the introduction of score was negatively correlated to pain relief and the project in the three pilot units, we encountered Rhondali W1, Lloyd-Williams M2, Saltel P3, Filbet M1 positively to anxiety. The internal consistency alpha of some problems that were mostly related to practical, 1Hospices Civils de Lyon, Centre de Soins Palliatifs, the DBQ-II was 0.87. administrative (competences), logistic and Lyon, France, 2Academic Palliative and Supportive Care Conclusion: The DBQ-II seems to be a valid and communication issues. Studies Group, Liverpool, United Kingdom, 3Centre reliable measure of barriers to pain management Our observation is that, extending a project of such a Leon Berard, Unité de Psycho-Oncologie- DISSPO, among Danish cancer patients. big dimension starting from three pilot units, it will be Lyon, France unavoidable to allocate dedicated human resources to follow the works in progress and to guarantee that both Aims: Depression is an important symptom for many PE 2.S5 screening and interventional measures will be palliative care patients but is rarely identified. The Brief performed carefully and continuously. The poster will Edinburgh Depression Scale is widely used within the The Danish version of the questionnaire on pain address the positive impact of the project but also UK and also in other countries but its use is limited due communication: Validation in cancer patients discuss the major related problems as well as present to its lack of translation. In this study we report the preliminary data collected in the three pilot units. translation and validation of the BEDS in the French Jacobsen R1, Møldrup C1, Christrup L1, Sjøgren P2, Hansen Language. O B3 Method: A group of experts were convened to translate 1University of Copenhagen, Department of PE 2.S7 the BEDS using back-to-back translation and the Pharmacology and Pharmacotherapy, Copenhagen, standard procedures of the EORTC. The French BEDS Denmark, 2Rigshospitalet, The Multidisciplinary Pain The Distress Thermometer used in daily practice was then validated on day 1 and day 7 within an in Centre, Copenhagen, Denmark, 3Holbæk County in advanced cancer patients admitted to a unit patient palliative care population against a semi Hospital, Pain Clinic, Holbæk, Denmark for palliative care structured psychiatric interview. Results: Forty-eight patients participated in the Aim of research: The Modified Version of the Oldenmenger W H1, Van Dooren S1, Duivenvoorden H J1, validation study. The prevalence of depression Patients’ Perceived Involvement in Care Scale (M-PICS) Bannink M1, Witkamp F E1, Zoetemeijer M K1, Jager A1, according to psychiatric interview was found to be is a tool designed to assess chronic pain patients’ Passchier J1, Van der Rijt C C1 56.3%. perceptions of the quality of pain communication with 1Erasmus MC, Rotterdam, Netherlands In our study with a cut off of 6, we found a sensitivity of his/her health care provider. The objective of this study 90% (95% CI 55,2 - 100) and a specificity of 63% (95% was to examine the psychometric properties of the Aim: The Distress Thermometer (DT) is a valid and CI 41,5 - 84,8) and a PPV (positive predictive value) of shortened Danish version of the M-PICS (SDM-PICS) easy to use screening instrument for assessing distress 0.788 and a NPV (negative predictive value) of 0,800. among cancer pain patients. in cancer patients. Although the DT has been widely For a cut off of 6, prevalence of depression was 68.8%. Methods: Cancer patients for the study were recruited used in the outpatient clinic, the experience in (vs 56,3% by interview) and the optimum cut off of the from specialised pain management facilities. Thirty- inpatients is scarce. We designed a pilot study at the French BEDS was 7, which yielded a sensitivity of 82.4% three patients responded to the SDM-PICS, the Danish acute unit for palliative care (PCU) in our cancer and specificity of 68.4%. The reliability of the scales Barriers Questionnaire II (DBQ-II), the Hospital Anxiety hospital. We explored the following three questions:1. (Cronbach´s Alpha) reached acceptable levels (0.715 for and Depression Scale (HADS), the Brief Pain Inventory what is the feasibility of daily DT assessments in the BEDS D1 and 0,843 for the BEDS D7). Pain Severity Scale (BPI), and demographic and disease- inpatients, 2. do DT scores change during admission Conclusion: We believe the French BEDS is a valid and related questions. Statistical analysis was performed and 3. what kind of problems induce distress (only sensitive tool for the screening of depression and can be with SPSS 16.00 and included: factor analysis of the asked when DT ≥5). used within the palliative care population. We suggest SDM-PICS, correlation analysis between the SDMP-PICS Methods: Oncology nurses applied the Dutch

sessions further work may allow the French BEDS to be used and other patient reported outcomes, and assessment modified DT (a horizontal numeric scale ranging from within the wider oncology population. of the internal consistency reliability alpha of the SDM- 0 (no distress) to 10 (unbearable distress)) daily in PICS. patients without cognitive deficits and limitations in

(Saturday) Results: Factor analysis of the SDM-PICS resulted in consciousness, admitted at the PCU. two factors. Factor one, Patient Information, consisted Results: Between October 2007 and August 2008 120 Poster of four items assessing the extent to which the patient patients were included. In 28 patients a DT score at shared information with his/her health care provider. admittance (DT-start) was missed. Reasons for missing Factor two, Health Care Provider Information, consisted data were: score was not given within 24 hours after of four items measuring the degree to which the health admittance (n=18), too ill (n=4), too difficult to give a care provider was perceived as the one who shares score (n=3), unknown (n=3). In 57 patients (out of 92) information. Two separate items addressed the both a DT-start and DT-end score (before discharge or perceived level of information exchange between before death) were administered. Reasons for missing the patient and the health care provider. The DT-end were: too ill (n=7), too difficult to give a score SDM-PICS total score was inversely related to the (n=5) and not further mentioned (n=23). In these 57 measures of pain management barriers, anxiety, and patients the median duration of hospital stay was 7 reported pain levels. The SDM-PICS total had an days (range 1-34). The median DT-start was 6 (range 0-

136 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

9; 74% ≥5), the median DT-end was 4 (range 0-10; 40% are knew. Aim of the project is to ensure the best in palliative care settings because of impaired physical, ≥5) (p=0.001). Reasons for DT-start ≥5 (n=42) were clinical impact reducing patient’s and care givers stress. cognitive and psychological status of patients. This physical problems (n=25), emotional problems (n=3) or Methods: We used a portable ultrasound system study investigated whether extensive standardized both (n=14). At DT-end (n=22) the reasons were (brang at patient’s home) to solve diagnostic questions instruments can be replaced by the single item question physical problems (n=14), emotional problems (n=6) or and, when useful, to carry out invasive methodics on well-being (“How do you feel today?”) from the both (n=2). without moving the patients from home. We used a 3,5 Minimal Documentation System (MIDOS). Conclusion: Administering the DT in daily practice - 5 MHz convex array, to evaluate abdomen and chest Method: Since April 2008 patients receiving inpatient seems feasible in patients admitted to a unit for disease. The US scan was assessed only if considered palliative care in the departments of palliative care, palliative care, but special attention for continuity is useful to emprove the care’s outcome, according with radiotherapy, oncology and in an inpatient hospice are necessary. During admission the DT scores decreased palliative care philosophy. asked to answer the Functional Assessment of Chronic significantly. High DT scores (≥5) were mostly caused Results: We evaluated, during the last year, 25 patients; Illness Treatment (FACIT-G), the QOL questionnaire of by physical problems. we assessed totally 31 tests, 23 to solve diagnostic the European Organisation for Research and the question about abdominal pain or distension, 5 for Treatment of Cancer (EORTC-QLQ-C30), the Schedule dyspnea and 2 to verify hitterus’ origin. Has been for the Evaluation of the Individual Quality of Life PE 2.S9 diagnosed 16 abdominal effusion (5 drained with US (SEIQoL) and MIDOS. Correlations of sum scores guide), 5 abdominal distension due to bowel or describe the extent of congruency between the selected Usefulness of the Palliative Performance Scale in oncologic disease, 2 urinary retention, 3 pleural instruments. prognostication for a Portuguese hospital-based effusion (1 drained with US guide), 1 pericardial Results: palliative care team effusion and 1 biliar dilatation. For 2 patients US scan wasn’t diagnostic. However, nobody was candidate to SeiQoL FACIT-G EORTC-QLQ- MIDOS Tavares F C1, Fradique E1, Matos A1, Coelho A1, Ramos A1, second level procedures. C30 1 Soares P Conclusions: First level US imaging has to be SeiQoL -.353* -.171 .189 1Centro Hospitalar Lisboa Norte, Unidade de Medicina considered an useful way to emprove the clinical Paliativa, Lisboa, Portugal accuracy in a home care unit, allowing to perform sure FACIT-G -.353* .331* -.351* diagnosis reducing patient’s discomfort, to carry out EORTC- -.171 .331* -.475** The Palliative Performance Scale (PPS) was recently invasive methodics (drainage of abdominal or pleural QLQ-C30 validated as a valuable prognostic tool also within a effusion) in the safest way and to avoid useless acts. MIDOS .189 -.351* -.475** hospital acute care setting. Despite PPS is already incorporated as standard practice in clinical assessment *statistical significance < 0.05; **statistical significance of Portuguese palliative care patients all PPS validation PE 2.S14 < 0.01 studies were carried outside Europe. Table 1: Spearman rank correlations of assessment tools Aims: To explore the predictive ability of PPS in a Usefulness of screening tools for delirium in on quality of life (SeiQoL, FACIT-G, EORTC-QLQ-C30) Portuguese tertiary academic acute hospital setting. palliative care units and MIDOS (N = 40). Methods: The PPS score was assessed at initial consultation. Medical records of all patients enrolled in Van Den Noortgate N J1, Desmedt T2, Piers R1, Steeman E2 Conclusions: Correlations between scores as well as the hospital-based palliative care team program 1University Hospital Gent, Geriatric Medicine, Gent, with the question on well-being were low to moderate. between February 1, 2007 and September 30, 2008 were Belgium, 2University Gent, Nursing Science, Gent, However, the question on well-being may be useful to reviewed. Survival patterns were examined for age, sex, Belgium initiate communication with the patient on his quality diagnosis, PPS, initial consultation setting (in-patient / of life. outpatient clinic) and death place. Aim: Delirium is a prevalent, often stressing symptom Feasibility and limitations of the use of such Results: Among the 321 patients analyzed, 92% had in the palliative care unit (PCU). Studies in an elderly questionnaires in palliative care settings have to be cancer and 46% were seen by first time at outpatient population have shown that awareness and preventive discussed. clinics. Seventy per cent of the PPS scores were under measures can influence the incidence of delirium. 50%. Patients were followed for a median of 17 days Screening instruments could help to diagnose delirium (quartiles 6 and 48 days). By 90 days only 14% in an early phase. PE 2.S16 remained alive. One-month mortality rates were 95% The objective of this study was to test the usefulness of for PPS scores 10-20, 56% for scores 30-50 and 20% for screening instruments for delirium in an overall PCU Assessment of symptoms in hospitalized patients PPS >50. PPS score and death place had a significant population. with advanced chronic diseases. Is there effect on survival on multivariable Cox proportional Methods: DSM-IV criteria are used as golden standard agreement between patients and doctors? hazards models (hazard ratio 0.96 and 2.77, for diagnosis of delirium. The Confusion Assessment respectively, p< 0.0001). Method (CAM) and the Delirium Observation Scale Palma Behnke M A1, del Río Silva I1, Bonati P1, Villarroel L1, Conclusion: Initial PPS score was a strong predictor of (DOS) were selected as screening instruments as these Olivares P1, Nervi F1 survival in our setting. As on earlier studies three are validated in Dutch. Seventy two patients were 1Pontificia Universidad Católica de Chile, Santiago, distinct PPS survival bands were found. recruted from 6 PCUs in Flanders. Chile Results: Mean age of patients was 69 years and 50% were male. Most patients had oncologic metastatic The assessment of symptoms is a key component of PE 2.S10 disease. 90% of these patients died in the PCU. The clinical work and of quality of life studies in palliative mean length of stay was 31 (IQR 3-209) days. The care. In the literature there is a wide variation between A comparison of palliative care outcome incidence of delirium in this group of patients was symptoms assessments made by patients and by measures used to assess the quality of palliative 27%, 34% and 75% as measured respectively by the physicians. care provided in residential aged care facilities: A DSM, CAM and DOS (original cut off of 3). The Objective: To estimate the frequency and diagnostic systematic review measure of agreement between the CAM respectively accuracy in the evaluation of physical and the DOS and DSM is low (?=0.248, p= 0.057; ?=0.156, psychological symptoms in chronic patients suffering Parker D1, Hodgkinson B2 p=0.043). The Crohnbach?s alpha is 0.837 for the CAM advanced illnesses. 1The University of Queensland, UQ/Blue Care Research and 0.966 for the DOS. Factor analysis shows some Method: This was a prospective study in adult & Practice Development Centre, Brisbane, Australia, symptoms to be more predictive than others. palliative care patients with chronic advanced illnesses 2Blue Care, Brisbane, Australia who were admitted to the internal medicine service at CAM DOS DOS university hospitals, between January and September This paper reports on the results of a Joanna Briggs (cut off 3) (cut off 6) 2007. The patients completed the Edmonton Symptom systematic review conducted to assess the psychometric Sensitivity 37% 77% 40% Assessment Scale (ESAS) for the diagnosis of physical properties (reliability/validity) and feasibility of and psychological symptoms. Patients with delirium palliative outcome measures used to assess the quality Specificity 93% 75% 92% were excluded. The ESAS was simultaneously applied to of palliative care provided in residential aged care Negative Predictive 93% 97% 93% the patients and their doctors to assess the level of facilities. Data were obtained from searching Medline, value diagnostic concordance between them. The measure of Cinahl, EMBASE, Psych Info, Psych Articles, DARE, concordance was made with the Kappa index for paired positive predictive 39% 26% 36% Cochrane Reviews, TRIP and hand searching key samples. value palliative care and aged care journals for articles Results: 148 patients met the inclusion criteria, 76 with published between 1/1/2000 and 1/9/2008. A total of advanced malignancies and 72 with other advanced 404 articles were identified of which 11 met the Conclusion: Screeningsinstruments for delirium chronic diseases. Among 124 patients without delirium, inclusion criteria. These 11 articles detailed nine (CAM, DOS) in a PCU have a low positive and a high the frequency of symptoms was very high, ranging different outcome measures. This paper compares the negative predictive value. This makes them very useful from 17.0 to 78.8%. Restlessness, sleep disorders and psychometric properties and feasibility of these to exclude delirium in a PCU patient population. To anorexia were the most common. The concordance measures including recommendations for research and augment their use in diagnosing the presence of between symptoms reported by patients and by doctors

practice. delirium in palliative patients, further research should was very low, with Kappa index ranging between 0.019 sessions focus on optimizing their positive predictive value. and 0.135. The physicians had a tendency to underrate and to overrate symptoms. The symptoms more

PE 2.S11 underrated were restlessness and anxiety and the more (Saturday) PE 2.S15 overrated were depression and appetite disorders. Ultrasound diagnostic at home in palliative Conclusions: In our sample of inpatients with Poster setting in abdomen and chest disease Quality of life in palliative patients: Comparison oncologic and non-oncologic advanced illnesses, there of assessment tools and subjective well-being is a very high frequency of psychological and physical Piazza S1, Vicario F2, Prino A1, Poletti S1, Alabiso O1 symptoms that are inaccurately evaluated by the 1A.O.U. Maggiore della Carità, Oncology and Pallitive Stiel S1, Krumm N1, Kues K1, Elsner F1, Radbruch L1 medical team. The use of physician assessments in Care, Novara, Italy, 2A.S.L NO, Algology and Palliative 1RWTH Aachen, Palliative Medicine, Aachen, Germany palliative care patients should not be considered a Care, Novara, Italy reliable alternative to patient self-assessment. Background: The preservation and improvement of Aim: Palliative patients needs, less than other, to be quality of life (QOL) for terminally ill patients is one of scanned with diagnostic test, but several could be the main aims of palliative care. Many assessment tools treated with more accuracy if more clinical elements for individual or health-related QOL are not practicable

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 137 Poster sessions (Saturday)

PE 2.S17 MOBID-2 Pain Scale was found to correlate closely with the personality (code 301.50). Axis IV was affected in patients´ self report, suggesting that the instrument is the 38%: Conjugal related problems (Code V61.10) in The impact of pain behaviour on pain intensity useful for making a reliable and valid assessment of 13 cases and Paternal-filial related problems. (Code in older persons with severe dementia: pain and pain intensity. V61.20) in 13 cases. The 15,02% presented adaptive non Reliability of the MOBID Pain Scale by video pathological symptoms (no altered any axis). uptake Conclusions: PE 2.S19 1) Patients under psychological supervision presented Husebø B S1, Strand L-I1, Moe-Nilssen R1, Husebo S B2, problems related to coping styles, and misadjusted Ljunggren A E1 A multi centre study of attitudinal barriers to behaviors. 1University of Bergen, Public Health and Primary cancer pain management 2) Few patients had problems related to aqxis II and IV. Health Care, Bergen, Norway, 2Red Cross Nursing 3) An important proportion of patients and caregivers Home, Bergen, Norway Sigurdardottir V1, Gunnarsdottir S2, Kloke M3, Radbruch L4, did not show any pathological symptom. Sabatowski R5, Kaasa S6, Klepstad P6 Aim: Advancing age is associated with high prevalence 1Landspitali University Hospital, Palliative Care Unit, of dementia, often combined with under-diagnosed Kopavogur, Iceland, 2Landspitali University Hospital, PE 2.S21 and under-treated pain. The Mobilization-Observation- Medicine II, Reykjavík, Iceland, 3Kliniken Essen Mitte, Behaviour-Intensity-Dementia (MOBID) Pain Scale is a Zentrum für Palliativmedizin, Essen, Germany, 4Aachen Can practice knowledge inform the development nurse-administered assessment tool to unmask pain University Hospital, Department of Palliative Medicine, of competencies in the nursing management of behaviour during standardized, guided movements and Aachen, Germany, 5Universitätsklinikum Carl Gustav terminal restlessness? inferred pain intensity scores. It was the aim to examine Carus, Dresden, Germany, 6Norwegian University of intra- and inter-rater reliability of pain behaviour Sience and Technology, Trondheim, Norway O’Connor M1, Recoche K M2, Lee S2, Newton J2 indicators, inferred pain intensity, and the overall 1Monash University, Palliative Care Research Team, MOBID pain score. Pain management remains a challenge in cancer care. Melbourne, Australia, 2Monash University, School of Methods: 26 nursing home patients with severe Attitudinal barriers (e.g. fear of addiction, concerns Nursing & Midwifery, Frankston, Australia dementia and chronic pain, 11 primary caregivers and 3 about tolerance and side effects) have been found to external raters at the Red Cross Nursing Home, Bergen. negatively affect the quality of pain management and Terminal restlessness is a complex, multifactorial During video uptake the patients were guided by their in turn quality of life (QOL) in cancer patients. While a phenomenon experienced by 25%-85% of terminally ill primary caregivers to perform standardized movements body of work already exists on the importance of patients in their final days or hours of life, (Bjajtman, of different body parts. Pain behaviour indicators (pain attitudinal barriers in cancer pain management, much 2003). Part of the aim of a larger study was to evaluate noises, facial expression, defence) were registered for needs to be known about such barriers and their education on terminal restlessness. Qualitative and each movement with subsequent rating of pain cultural nature in an international context. The quantitative methods were used to assess nurses’ intensity by external raters, who assessed and scored purpose of this study is to examine attitudinal barriers perceived levels of competence in managing terminal the videos concurrently and independently at day 1, 4 to cancer pain management in an international sample restlessness patients. A cohort of 13 registered nurses, and 8. of patients with advanced cancer. working in an Australian palliative care inpatient Results: Facial expression was most commonly The study is based on a model developed by Ward and facility, completed assessments and interviews pre and observed, followed by pain noises and defence. colleagues that proposes that attitudinal barriers to pain post education on the topic. Interviews explored the Repeated assessments increased the number of management negatively affect patients’ coping efforts participants’ knowledge and experience in dealing with observed pain behaviours, but did not improve (utilization of available analgesics) and consequently the complex condition. reliability. Inter-rater reliability was highest for noises, patients’ QOL. Extensive literature review revealed a wealth of followed by defence, and facial expression (?=0.44-0.92, This is a descriptive, correlational study. Participants are information defining terminal restlessness, its ?=0.10-0.76, and ?=0.05-0.76, respectively, at day 8). roughly 1000 patients, 18 years and older with assessment and management, however the majority of Mobilization of arms and legs were rated most painful. advanced cancer in four European countries. Data was the information was medically focused. Preliminary Intra- and inter-rater reliability of overall pain were very collected by research personnel who administered analysis of interview transcripts identified already well- good (ICC 1,1 ranging 0.92-0.97 and 0.94-0.96, paper and pencil questionnaires. Attitudinal barriers entrenched nursing strategies for managing terminal respectively, at day 8). Reliability of pain intensity were evaluated with the Barriers Questionnaire-II, pain restlessness, based on the experience, and knowledge of scores tended to increase by repeated assessment. was evaluated with the Brief Pain Inventory, and QOL the participants. Conclusion: Observation of pain behaviour is an with the EORTC QLQ-C30, all widely used, valid and This ‘practice knowledge’, or ‘know-how’ (Lumby, important prerequisite for assessing pain intensity, but reliable questionnaires. Descriptive statistics will be 2000; Sutton & Smith, 1995), was incorporated into the reliability of pain intensity scores is higher compared to used to describe attitudinal barriers, in the whole educational package as nursing management of reliability of pain behaviour indicators. Using video sample as well as for samples from individual countries. terminal restlessness, and subsequently delivered to a uptake, MOBID Pain Scale was shown to be sufficiently Inferential statistics will be used to compare attitudinal wider audience of palliative care practitioners. reliable to assess pain in older persons with severe barriers between countries and to examine the Individual interviews and self-assessment scores two dementia. relationship between barriers, pain, pain management months following delivery of the education indicated and background information such as age, gender, and increased confidence, and a measurable uptake of the disease variables. ‘practice knowledge’ by the participants. The results PE 2.S18 Data collection has just been completed and data is highlighted the need for greater recognition of, and being prepared for analysis. Hopefully the results will opportunity to nurture nursing knowledge in relation Comparison to a gold standard: Concurrent aid in further studies on patient education to a frequently experienced phenomenon. validity of the MOBID-2 Pain Scale interventions to improve pain management in clinical Recommendations for further research would be aimed practice. at validating outcomes across a broad range of palliative Husebo B S1, Amundsen S2 care specific sites of care, and developing a base set of 1University of Bergen, Public Health and Primary nursing competencies which address a complex and Health Care, Bergen, Norway, 2University of Bergen, PE 2.S20 challenging area of palliative care nursing practice. Bergen, Norway Psychological diagnostic profile of palliative Aim: Pain is common among nursing home (NH) patients PE 2.S22 patients with dementia, yet pain is often unrecognized and inadequately treated in this population. Pain Nabal M1, Marine P2, Serret C2, Juvero T1, Perez E2, Palomar Implementing palliative outcome measures in a assessment is a particular challenge in cognitively C1, Casals R M2 palliative care unit (PCU) in Argentina impaired patients due to poor self-report skills, and 1Hospital Universitarios Arnau de Vilanova, Palliative depends on the ability of health personnel to register Care Supportive Team, Lleida, Spain, 2Hospital Santa Vignaroli E1, Bertolino M1, De Marco A1, Ledesma E1, Vega and interpret pain behaviour. Although many pain Maria, Palliative Care Supportive Team, Lleida, Spain F1, Peirano G1, Rey V1, Mammana G1, Wenk R1, Connor S2 assessment instruments have been developed for use in 1Programa Argentino de Medicina Paliativa. Fundación patients with dementia, these scales do not To know the psychological profile of patients attended FEMEBA-Hospital Tornú, Ciudad de Buenos Aires, systematically assess pain from the musculoskeletal by a palliative care team in a teaching hospital. Argentina, 2National Hospice and Palliative Care system, and other types of pain, such as pain Descriptive analysis carried out by medical records Organization, Alexandria, United States originating in internal organs, the head and skin. It was revision. Inclusion criteria: Patients and relatives the aim of this study to investigate inter-rater reliability referred for symptom control between January and Introduction: OM are important to evaluate the and concurrent validity of the Mobilization- June 2008 with psychological distress > 3. Exclusion efficacy of palliative care (PC) interventions, and reveal Observation-Behaviour-Intensity-Dementia (MOBID-2) criteria: Refused psychological intervention; Cognitive problems and opportunities for improvement. There is Pain Scale using elderly NH patients without dementia impairment; Intervention < 48 hours. Variables studied: little information available from developing countries. as a gold standard compared to proxy rater. Age, Gender, Service from referral, Main diagnosis The US National Hospice and Palliative Care Methods: NH patients (N=30) without or with mild (CID9); Destination on discharge. Psychological Organization (NHPCO) developed a set of End Result

sessions dementia and with a history of pain, who was able to diagnosis (DSM-IV-TR and CID-9-MC in 3 axes. Axis I: Outcomes of Care, including comfortable dying, which express pain, evaluated their own pain situation using Clinical disorders and problems object of clinical is an outcome related to dying free from distressing the MOBID-2 Pain Scale. Concurrently and attention. Axis II: Disorders of personality. Axis IV: symptoms for which interventions are available, with

(Saturday) independently, the primary caregiver (proxy rater), a Psychosocial and environmental problems). Descriptive pain being the most common and feared symptom. registered nurse or licensed practical nurse, used the statistics analysis were used. Objective: Evaluate implementation of comfortable Poster MOBID-2. From the whole sample (N= 333) 153 (46,25%) were dying as an OM of patients comfort after 48hs of care in Results: Inter-rater reliability of the different test items evaluated by the psychologist. Main age: 69,6 (25-95); a PCU in Argentina. and overall pain intensity scores was excellent Male:59,76%; Diagnosis: Oncology 92,50%. Methods: All consecutive patients at first outpatient PC (ICC=0.89-0.97). Assessment of pain from internal Destination on discharge: Supportive Home Care Team consultation and admitted to hospital general ward or organs, the head and skin (Part 2) showed a somewhat 30%, Sociosanitary Centers 24,9%, Deaths: 22,2%, acute PCU, from Sep 2007 to Aug 2008, were assessed of lower reliability than pain originating from the others 22.8%. Psychological Profile: 23% presented the presence of pain. Patients with affirmative answers musculoskeletal system (Part 1) (ICC=0.89-0.97 and alterations in axis I: 100% Coping Problems (code 316); were reassessed within 72hs after the first 48hs of ICC=0.92-0.97, respectively). The correlation between and 36,60% Mixed Adaptive Alteration with anxiety or admission and asked if their pain was brought to a proxies’ and patients’ pain intensity scores varied from low mood (code 309.28). Alterations in the axis II were “comfortable level” within 48 hours of admission. poor to excellent. found in the 8.5%: 3 Narcissist alteration of the Patients without pain or unable to self report were Conclusion: Proxy assessment of pain using the personality (code 301.81) and 3 Histrionic alteration of excluded.

138 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

Results: 343 patients were assessed; 51% (174) in the included: nurses (n=13), nursing assistants (n=4), and interviews with key authorities. The country is outpatient clinic, 42% (146), in general ward, 7% (23) physicians (n=10) and the palliative care support team predominantly rural 61%. There is a social transition in PCU. 58% (198) were included and 42% (145) were (n=5). Descriptive analysis was conducted and content (increase divorce rate, decreased marriage, etc) high excluded (28% without pain and 14 % unable to analysis of the open-ended questions. 74% of Oncology migration of young adults questioning the resource of communicate). After the first 48hs, 62% (122) were health professionals had heard about ESAS but carers for potential PC homecare services. From comfortable, 16% (32/198) were uncomfortable recognized never having consulted it. They initially mortality data an estimation of 23567 patients would because of pain and 22% (44/198) were unable to self commented it did not contribute much to their need annually palliative care (over 50% concentrated in report. practice. However after seeing the tool and a case, all 11 districts and capital-eventual starting points for Discussion: The use of this OM of quality of care was the professionals stated that it could add much to developing services). feasible in different settings of care in a developing improve the symptom control, quality of care and the Staff: 143 doctors and 684 nurses specialised in PC country. The percentage of patients comfortable with follow up. Palliative Care members used the ESAS in the would be needed to care for the identified patients. pain level was similar to those reported by the NHPCO. daily practice and considered it useful. 40% of these There is a remarkably high incidence of liver diseases These results are a starting point to define standards of professionals do to each patient at least one ESAS per third place in mortality after cardiovascular and cancer. care and quality improvement measures in the future day and the same percentage one per week. They Death occurs home 83.9% (heart diseases, cancer, liver The need of a phone contact 72hs after admission may unanimously considered convenient to do to each failure, trauma) and 16.1% in hospital (stroke, generate work overload of staff but It allowed us to hospitalized patient one ESAS everyday or every two septicaemia, hearth attack, AIDS, TB). There are make corrections to treatment plans immediately and days; while 80% suggested carrying out the ESAS in potential beneficiaries for PC in each group so basic PC patients were very pleased to have been contacted by each outpatient visit. The open-ended questions training should be included in the curriculum for team members. pointed out some difficulties with the terminology and nurses and targeted medical specialities. Guidelines and with the lack of time. The suggestions to promote the protocols are needed. From the 9 providers in the use of ESAS were: to announce the ESAS through country 1 fully engaged in PC other 4 devoting over PE 2.S23 pamphlets and information sessions and to promote its 50% of time to PC. Work is heavily relying on use introducing a more accessible computer icon. volunteers. Outcomes measures of care in caregivers (CG) in a Oncology health professionals did not know the ESAS Types of patients cared for: cancer, AIDS, Cirrhosis. palliative care (PC) unit in Argentina in deep but considered its regular use would add much Average of stay in service: between 30 days and 6 to improvements in the quality of care of the patients. months. Financing no public sources. Existence of 2 Vignaroli E1, Bertolino M1, Correa A1, Macchi M1, Vega F1, An implementation plan could help to obtain more national PC associations shows lack of maturity. No Peirano G1, Rey V1, Wenk R1, Connor S2 clinical impact of the ESAS. official recognition for PC, no oral opioid available, 1Programa Argentino de Medicina Paliativa. Fundación over restrictive regulation concerning opioid FEMEBA-Hospital Tornú, Ciudad de Buenos Aires, prescription but PC included in the national health Argentina, 2National Hospice and Palliative Care PE 2.S25 policy, provision in the frame contract but no Organization, Alexandria, United States contracting modality stipulated, task force for PC A multi-centre validation study of two numerical created officially. Results presented to authorities. Introduction: One of the aims of PC is family rating scale versions of the Edmonton Symptom SOROS founded project. support. This includes training CG to feel more Assessment System (ESAS) in palliative care (PC) confident in the care of the patient and helping the patients (PTS) family member prepare for the death of their loved PE 2.S27 one. Family perceptions of care are essential in quality Watanabe S1, Nekolaichuk C2, Beaumont C1 improvement initiatives. The US National Hospice and 1Cross Cancer Institute, Symptom Control and Building local capacity and sustainability in Palliative Care Organization (NHPCO) developed a set Palliative Care, Edmonton, Canada, 2Grey Nuns hospice and home based care - A study of hospice of End Results Outcomes of Care that includes family Community Hospital, Tertiary Palliative Care Unit, and palliative care services in South Africa assessment. There is no standardized data on family Edmonton, Canada perception of care available in Argentina. Wagner A1 Objective: Evaluate these key processes of care using Aim: The ESAS is a widely used tool for self-reporting of 1HPCA, Organisational Development, Cape Town, NHPCO outcome measures in CG post death. symptom intensity by PC PTS. It consists of numerical South Africa Methods: Phone contacts to CG of all patients (pts) rating scales (0=no symptom, 10=worst possible assisted by a PC team, 2 months after death during symptom) for 9 common symptoms, with the option of The vision of the Hospice Palliative Care Association of 1/Sep/07 to 31/Aug/08. adding a 10th. A recently completed prospective “think- South Africa ( HPCA ) is Palliative Care for all. One of Three questions were used: aloud” study of 20 advanced cancer PTS identified the strategies to achieve Palliative Care for all is to 1) did our PC team increase your confidence to safely potential areas for improving the ESAS. The ESAS was develop a hospice or palliative care service in every care for your loved one as death approached?; revised accordingly (ESAS-r). Changes included health sub - district. Hospices alone can not achieve 2) Did our PC team provide effective emotional support emphasizing the timeframe as “now”, adding brief this and therefore home based care organisations are for you in preparing for the death of your loved one?; definitions for potentially confusing terms, grouping developed to enhance the services they provide by 3) Based on the care that you and your love one related symptoms together and moving “well-being” to incorporating Palliative Care into the service. To received, would you recommend PC to others? the end. The objectives of the current study were to enhance services an in depth study of the service must Possible answers were yes/no. Place of death was also compare PTS’ responses between the ESAS and ESAS-r, be conducted. To conduct assessments and build recorded. and obtain their opinions regarding ease of capacity assessment tools were developed by the Results: 150 pts died. 19% (28) died at home and 81% understanding and completion of these 2 versions. organisational development section of the HPCA. (122) hospitalized (34% in an acute PCU and 51% Methods: English-speaking PTS referred to PC The purpose of the tools were hospitalized with PC assistance).In 28% (41) no phone programs (tertiary PC unit, hospice, acute care a) to assess organisational capacity, contact was possible. Of those contacted 87% (93/109) consultation service, outpatient clinic) in 4 cities were b) to identify capacity building needs, felt more confidence to care their love one, 84% recruited using cross-sectional sampling. Consenting c) to give recognition to achievements of the (90/109) felt they received emotional support that PTS completed the ESAS and ESAS-r, and were asked organisation, helped them to prepare to the death of their love one, structured questions to elicit their opinions of these 2 d) to provide appropriate Palliative Care training, and 96%(102/109) would recommend PC to others. versions. e) to provide organisational mentorship and Discussion: Most of the CG reported positive answers Results: As of October 2008, 464 PTS have been f) to share and continue the hospice philosophy. related to PC interventions, despite the fact that almost screened; 60 PTS out of a target sample size of 160 have 86 Organisations in 9 provinces with the potential to a third could not be contacted. Negative answers were been completed (male 52%, mean age 61.5 (SD 13.6), incorporate Palliative Care were included in the found mainly in patients where the follow up was lung cancer 25%, genitourinary cancer 18%). Mean programme and underwent assessments which was short, only during hospitalization, and where contact ESAS scores ranged from 1.5 (SD 2.3) for nausea to 4.5 followed by the implementation of development plans. with the caregiver was very limited. Most pts died (SD 3.3) for appetite. Mean scores differed between the Capacity building was done by a team of people with a hospitalized receiving specialized PC support, as there 2 versions by less than or equal to 0.2 for all symptoms variety of Palliative Care and other skills. The result was was no home care available. These results allow future except appetite (ESAS-r 3.7 (SD 3.4)). 65% and 73% of not just better developed organisations with Palliative quality improvement interventions. PTS rated the ESAS and ESAS-r as either very easy or Care added to the service but also an organisation easy to understand, respectively. 78% and 83% of PTS which is credible and sustainable. In four of the nine rated the ESAS and ESAS-r as either very easy or easy to provinces these organisations were able to diversify PE 2.S24 complete, respectively. 10 and 22 PTS preferred the their funding sources significantly. The main aim of all ESAS and ESAS-r, respectively; 28 PTS had no of these activities were to improve service and give Health professionals’ views and use of the preference. quality care to patients and families. Edmonton Symptom Assessment System in the Conclusion: Preliminary data suggest that PC PTS find The purpose of this presentation is to share the care of patients with advanced cancer the ESAS-r easier to understand and complete than the assessment tools, the process used, lessons learnt, share ESAS. More PTS prefer the ESAS-r than the ESAS. successes and make the assessment tools available to Velasco I V1, Arantzamendi M2, Centeno C3, Carvajal A1, De Funded by CIHR PainNET. other organisations wanting to expand Palliative Care Santiago A3 and enhance programmes other than hospice and sessions 1Clínica Universidad de Navarra, Planta de Palliative Care services. Hospitalización Oncológica, Pamplona, Spain, PE 2.S26 2

Universidad de Navarra, Departamento de Enfermeria (Saturday) de la Persona Adulta, Pamplona, Spain, 3Clínica Palliative care needs assesment in Republic of Universidad de Navarra, Oncologia, Pamplona, Spain Moldova Poster

The Edmonton Symptom Assessment System (ESAS) is a Mosoiu D1 useful tool to assess patients in palliative care. It was 1Hospice Casa Sperantei, Brasov, Romania introduced by the Palliative Care Team in a hospital 3 years ago. The study aimed at assessing oncology and Needs assessment is the first step of a national strategy. palliative care health professionals’ view of the tool and Different methods can be use up to available resources. their use when caring for patients with advanced This needs assessment was done in 2006-2007 by cancer. A questionnaire was developed and used on a combining an population-epidemiological approach, a face to face interview with health professionals of 2 SWOT analyses of the three elements of the WHO wards caring for oncology patients. The sample triangle, questionnaire to the palliative care providers

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 139 Poster sessions (Saturday)

PE 2.S28 friendly and resource-effective. QUAST PM is instruments were used in 3 cases. Guidelines and compatible with the core data set documentation reviews (n=11), explicitly referred to the use of specific Therapeutic relevance of non-invasive requirements of the annual nation-wide instruments or observation methods in 2 cases. diagnostics in palliative care - results from a documentation system (Hospice and Palliative Care Conclusion: Monitoring the effect of PS has been representative survey and own experiences Evaluation Group (HOPE)) in Germany. Furthermore, conducted in different ways in PS literature. The use of QUAST can be used as performance record for statutory reliable and valid measurement instruments appears to Alt-Epping B1, Baumann R M1, Lindena G2, Nauck F1 health insurers and for scientific and health services be limited. In order to improve the quality of palliative 1University Medical Center Göttingen, Dept. of research. Detailed examples for use will be presented. sedation, use of and research in monitoring Palliative Medicine, Göttingen, Germany, 2Institut Conclusions: QUAST PM facilitates excellent instruments for the effect of palliative sedation should CLARA, Kleinmachnow, Germany documentation for various purposes (quality assurance, be increased. research and remuneration) and settings (in- and Introduction: Applying diagnostic techniques in outpatient). palliative care (PC) requires a thorough balance PE 2.S34 between a physical, psychosocial (and financial) burden and its therapeutic relevance in far advanced diseases. PE 2.S31 Assessment of knowledge, attitudes and practices The extend of diagnostic employment in PC, preferred in end-of-life care techniques, application problems, its informative value Development of assessment tool for terminal and therapeutic significance still have to be described. cancer patients Teneza M D T1, Neri M F1, Reandelar M F1 Methods: The Hospice and Palliative Care Evaluation 1Far Eastern University-Dr. Nicanor Reyes Medical HOPE 2007 accrued the application of microbiological Koh S1 Foundation (FEU-NRMF), Department of Community and imaging techniques in PC institutions. 1The Catholic University of Korea, Department of and Family Medicine, Quezon, Philippines Furthermore, 70 consecutive ultrasound scans in our Internal Medicine, Seoul, Korea, Republic of PC unit have been retrospectively assessed. Aims: A cross-sectional study was conducted to Results: In 691 PC patients (from a total of 3184 in Objectives: Since the number of patients with describe the relationship of the resident physicians´ HOPE; 21,7%), diagnostic techniques (DIA) were advanced cancers is increasing gradually, it is very knowledge, attitudes and practices in end-of-life care applied and documented. In-patients with DIA (86,1%) important to control their various physical and and demographic features, medical specialty, formal and the HOPE collective showed a comparable age psychological problems. In order to control the training on care of the dying, personal and clinical (67,9a) and duration of hospital stay (16,9d). symptoms effectively and improve the patients’ quality experience on care of the dying patients. Microbiological techniques contributed to 26,1% of all of life, it is essential to find and evaluate precisely the Materials and methods: A total of 67 resident documented in-patient investigations, imaging various symptoms of terminal cancer patients. We have trainees participated and answered the Knowledge- techniques 69,1%. Ultrasound was the preferred developed the symptom assessment tool for terminal Attitudes-Practices (K-A-P) questionnaire on end-of-life imaging technique on PC units (41,3%), whilst cancer patients, and compared the results of the care. The data gathered were tallied using Microsoft radiography was rather employed on oncology wards assessment with patient reported outcomes. Excel and analyzed using SPSS 10.0 statistical software. (OW, 38,6%). CT / MRI (16,6% on PC units, 19,3% on Methods: We evaluated 17 common symptoms shown Results: More than half of the respondents have OW) and nuclear imaging (1,9% on PC units, 7,0% on in patients with terminal cancers. Patients’ symptoms adequate knowledge (52.2%), positive attitude OW) were rarely documented. In 88,4% resp. 80,8%, were scored as none(0), mild(1), moderate(2), or (53.72%), and have appropriate practices (53.7%). DIA was considered relevant for further treatment severe(3) with reference to objective criteria. The Nearly half (49.3% and 44.8%) scaled themselves as decisions (in-patients only); transportation problems records of the physical symptoms were carried out on satisfactory in knowledge and attitudes; a third (38.8%) and pain during imaging were relevant obstacles. In our the similar hour every day. Among the patients, who assessed themselves as satisfactory in practices. Using own patient cohort, ultrasound was followed by have clear consciousness and can communicate Chi-square test, there were no observed significant therapeutic changes in 37,2%, mostly invasive normally, were investigated in order to evaluate the associations when the relationship between the procedures (17,1%). Transportation problems could be severity of common symptoms by using Memorial different physicians’ characteristics and their almost entirely avoided by using a mobile ultrasound Symptom Assessment Scale (MSAS). knowledge, attitudes, and practices was assessed. For device. Results: The physicians performed evaluation of 121 knowledge, ENT-HNS, Family Medicine and Surgery Discussion: DIA in PC is applied independently of age terminal cancer patients by using the assessment tool residents had the most residents with adequate or duration of hospital stay; its therapeutic significance and history records of physical examinations as well. knowledge (p = 0.055). For attitude, Family Medicine, is considered to be high (resulting in active therapeutic Only 54 patients could be investigated to evaluate the Obtetrics-Gynecology and Surgery had the most measures or general prognostic reevaluation); symptoms by using MSAS. The physical symptoms have residents with positive attitude (p = 0.156). For procedural problems may be resolvable. Therefore, this no difference in the evaluation results between the practices, Family Medicine, Child Health and Surgery survey might challenge the tradition of low technology patients and physician. The physicians’ evaluations on had the most residents with appropriate practices (p = in PC. drowsiness, nervousness and anxiety were significantly 0.010). Those with personal experience with death of a different in terms of frequency, severity and distress. loved one or a close friend (61.2%) had appropriate (p=0.0001, 0.0001, 0.005). practice in end-of-life care than those without (33.3%) PE 2.S29 Conclusions: The patients who were reported the (p = 0.042). Lastly, residents who rated themselves as outcomes by using MSAS could be obtained from 44% either having a very satisfactory and satisfactory Computer assisted tool for documentation and of the patients with terminal cancers. However, the tool knowledge, attitudes and practices in end-of-life care quality assurance in pain and symptom used by doctors to evaluate objectively could be applied had higher proportion of actual adequate knowledge, management in palliative care patients (QUAST for all patients including who cannot communicate positive attitude, and appropriate practices (p = 0.001 Palliative Module) every day. Compared to the actual reported symptoms, and 0.016 respectively). the symptoms evaluated with the tool showed less Conclusion: This preliminary study described the Clemens K-E1, Gockel H-H2, Falckenberg M3, Gleim M4, seriously, especially in psychological symptoms. relationship of the resident physicians´ knowledge, Schulzeck S4, Maier C5 attitudes and practices in end-of-life care and 1Malteser Hospital Bonn/Rhein-Sieg, Zentrum für physicians´ characteristics. The results were utilized as Palliativmedizin, Bonn, Germany, 2Interdisziplinäres PE 2.S33 basis for ongoing planning of the supportive, palliative Zentrum für Schmerztherapie Maxvorstadt, München, and hospice care training and education programs in Germany, 3Schmerzambulanz Alten Eichen, Hamburg, Monitoring the effect of palliatieve sedation: a the institution. Germany, 4UKSH, Campus Kiel, Klinik für systematic review Anästhesiologie und Operative Intensivmedizin, Kiel, Germany, 5Ruhr Universität Bochum, Bochum, Brinkkemper T1, Van Noorel A1, Szadek K M1, Gootjes J2, PE 2.S35 Germany Van Tol C2, Perez R S G M1, Zuurmond W W A1 1VU University Medical Center, Anesthesiology, Constipation - How to audit practice against Aim: QUAST is the validated German pain therapy Amsterdam, Netherlands, 2Hospice Kuria, Amsterdam, standards documentation system for use of pain clinics and pain Netherlands specialists. An expert group of the German Chapter of Brooks M J1, Ahmad F2, Dickman A3, Littlewood C4, Makin the International Association for the Study of Pain Background: Palliative sedation (PS) is an important M5, Duddle C6 (DGSS) developed an additional documentation intervention for relief of refractory symptoms at the 1Royal Liverpool University Hospital, Palliative Care, module for palliative care patients in order to facilitate end of life. To assure the proportionality of PS, Liverpool, United Kingdom, 2LOROS Hospice, Leicester, entry of complex information with regard to pain and adequate monitoring during of the effect of PS is United Kingdom, 3Marie Curie Hospice, Liverpool, symptom management in this patient group. The aim essential. United Kingdom, 4St Helens & Knowsley Teaching of the development of the QUAST Palliative Module The goal of the present systematic review was to Hospitals Trust, Merseyside, United Kingdom, 5North (PM) was to present a valuable tool for daily evaluate use of measurement instruments for the effect East Wales NHS Trust, Wrexham, United Kingdom, documentation of patients’ treatment and for outcome of PS in current literature. 6Wigan and Leigh Hospice, Wigan, United Kingdom studies in Germany. Methods: Following the PICO method, studies

sessions Methods: QUAST PM has been developed on the base published between 1991 an 2007 evaluating PS written Background: A Palliative Care Network based in of File maker Pro, a user-friendly and analysis-oriented in English, German or Dutch were identified using Northwest England has evidence based standards and database environment for QUAST documentation and Pubmed, EMBASE, Cinahl and the Cochrane library. guidelines for the management of constipation.

(Saturday) quality assurance. The module comprises: an outcome Prospective as well as retrospective studies, guidelines Standards should be adhered to when managing questionnaire for the evaluation of treatment-related and reviews were considered for inclusion. Data were constipation, but measuring practice against these Poster changes of outcome variables, a daily questionnaire and extracted concerning the manner in which the effect of standards it is not always easy to do. a protocol for treatment procedures and effects of PS was monitored. Aims: To assess the management of constipation across symptomatic therapy, including nursing measures, Results: The search yielded 245 studies of which 12 the Palliative Care Network and surrounding areas physiotherapeutic interventions and psycho-social articles could be included. Cited reference search against the regional standards. procedures. The documented data of patients can be revealed 8 additional studies. In pro- and retrospective Method: During November 2007 a multi-centre multi- analysed, printed, and automatically assigned to coding studies (n=9), effect of PS was monitored by way of disciplinary prospective survey was performed. A systems like ICD-10 or ICP-M. assessing the level of (refractory) symptom control questionnaire was completed for 10 consecutive new Results: QUAST PM has been tested by 4 Centres for (n=7), monitoring the level of consciousness (n=5), referrals by every specialist palliative care inpatient, Palliative Care in Germany by entry of data of more monitoring of vital parameters (n=2) and level of hospital and community team in the study area. It than 250 in- and outpatients. Compared to previous patient comfort (n=1). Predominantly ad-hoc asked about bowel function and medications on initial documentation on paper QUAST PM proved to be user- instruments were used, established measurement assessment (day 0), days 3 and 7 and aimed to measure

140 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) current practice against the existing standards. E.g. January 1st to December 31st 2006. Most common already emerging is how very useful the application of “Patients commencing strong opioid therapy should causes of death from cancer in Scotland, 2005: lung, the results are at individual hospice level. also be started on a combination laxative. (Grade D)”. colorectal and breast. Referrals to SPCT were most Examples of how hospices are making positive Results: 226 patients were included. 94 patients did frequently received for patients with cancer of lung management decisions and changes, as well as using not have bowel trouble. Of the129 with bowel trouble; (16.4%), head and neck (12.5%) and breast (12.2%). the results to select topics for clinical audits, will be 89 had constipation alone, the rest a combination of Majority of referrals requested symptom control (93%). shared. Quality management and improvement is one constipation, diarrhoea and incontinence. Other reasons given: psychosocial support (14.3%), of the service elements included in the HPCA/ 50 patients dropped out by day 3, mainly due to patient future care planning (8%) and end of life care (1.8%). COHSASA (Council for Health Service Accreditation of death or transfer to a different care setting. Patients with lung cancer were more likely to be Southern Africa) standards. Opioid use increased from (121/226) 53.5% on day 0 to referred for psychosocial support than those with breast Conclusion: The APCA POS is fast becoming a key tool (122/176) 69.3% on day 3 and all laxative use cancer (18% v 10%). for member hospices to use in terms of their own increasing (121/226) 53.5% to (118/176) 67%. Despite Conclusion: The cancer hospital in which this project quality management and improvement programmes. this increase the trend was not to start a combination was carried out provides oncology services for 60% of Changes in policy and practise can now be weighed up, laxative for opioid induced constipation, with one third the Scottish population. The Specialist Palliative Care as subsequent audits reveal their impact on the quality taking opioids on a combination laxative. Team (SPCT) at the cancer centre is an advisory team of care. Conclusion: It is clear that to measure practice against with varying input into site-specific oncology teams. evidence based standards: SPCT has regular attendance at multidisciplinary team 1. The strong evidence base that should support good meetings (MDTMs) for lung and head and neck cancer. PE 2.S40 standards is not always there. Attendance at site-specific MDTMs appears to influence 2. Clear and measurable standards are difficult to write. referral to SPCT. Variation in reason for referral may Quality of life of cancer patients treated in 3. Measuring practice against standards and producing reflect understanding of SPCT role and symptom Helsinki University Central Hospital, accurate results can be difficult even when standards burden of tumour type. Department of Oncology. A cross-sectional study are well written. Following this study and literature review the standards Saarto T1, Tasmuth T1, Elme A1, Jääskeläinen A-S1 and guidelines for the network were revised. PE 2.S38 1Helsinki University Hospital, Department of Oncology, Helsinki, Finland 24-hour specialist palliative care advice line: An PE 2.S36 audit of the first 5 years The aim of this study was to investigate the quality of life and the prevalence of symptoms of cancer patients Intention to leave: A hospice problem? Trotman I1, Gale S1, Jamal H1 treated in Helsinki University Hospital, Department of 1East & North Herts NHS Trust, Michael Sobell House, Oncology. This study took place in one selected day, Porta E1, Rizzi B1, Biagetti L1, Vignola V1, Cattaneo D1 London, United Kingdom 31st of November 2006, when all cancer patients 1VIDAS, Hospice, Milano, Italy treated in the Department were interviewed by EORTC Out-of-hours (OOH) telephone support has been part quality of life questionnaire. 447 patients were eligible Premise: Nurse turnover is a costly problem for of services provided by a specialist palliative care unit for the study. 215 (48,1%) responded to the hospitals. Job stress work satisfaction group cohesion (SPCU) to patients for many years. In 2002 it was questionnaire. 129 patients (60%) were female. 40.5% and weekend overtime were all predictors of anticipated decided to open the service to all patients within a wide had breast, 20.5 % prostate and 15.3% gastrointestinal turnover (Shader 2001). Vachon (1995) attests that staff geographical area regardless of whether they had cancer. Local disease was present in 119 (55.9 %) and stress and burnout in hospice/palliative care is less than received care at the SPCU. advanced disease in 96 (45.1%) patients. 104 patients in other settings but that this stress is due mainly to Method: A 24-hours telephone support line was (48.4%) had radiotherapy, 98 (46.0%) chemotherapy organization and social issues. formally established. SPCU staff undertook call- and 56 (26.4%) endocrine therapy. Aim: To audit the “intention to leave” in a Western handling training. The service was promoted to Results: The global quality of life (62.0) was somewhat European country hospice. healthcare providers and patients. Calls were handled worse in our patients as compared to Nordic population Method: by the nursing/medical team on duty. A senior SPC as well as physical function (69.3), role function (69.8) Sample: full time nurses and nursing assistants of Vidas doctor was available for complex symptom and social function (75.3). Emotional (78.6) and hospice. Nurses and nursing assistants were defined as management referral. Data on all calls was collected cognitive function (83.2) seemed to be at the same level registered or licensed practical nurses. The hospice and categorised: status of caller, nature of call, time of than in the Nordic population. Fatigue (91.1%) and opened in 2006, the audit was carried out after 2 years call, location of patient and advice given. As a quality insomnia (71.2%) were the most common symptom (at of activity. control measure a survey of service users was least modest in intensity in 37.4 and 19.5% of the Instrument: semistructured individual interview given undertaken. patients, respectively). Pain was reported in 55.3% of by an outside psychologist consisting of 20 questions Results: 2,872 calls were received OOH, 216 in 2002 to the patients, at least modest pain in 16.3%. Depression and an anonymous questionnaire. Items structure was 684 in 2007. Calls requested symptom management and anxiety was reported by every second patient; loss established using a resource expert and international advice (47%) drug advice (17%), admission requests of appetite, constipation, breathlessness and diarrhoea literature review. (11%) and nursing advice (8%). Non-clinical general every third, but the intensity was mainly mild. The Results: Hospice staff at start up: 5 white non Hispanic enquires accounted for 16% of calls. Patients/relatives quality of life was lower and the symptoms more and 1 Hispanic nurses; 8 Hispanic and 2 white non were the major users of the service (62%) followed by significant in patients with advanced than local disease Hispanic nursing assistants. Sex: 4 M; average age 40. nurses (27%) and doctors (11%). Most calls were from except insomnia (at least modest in 17.7 vs. 20.5%, 25% had previous experience in palliative care. Hospice the patient’s home (74%) followed by hospitals (20%) respectively). Pain was most commonly seen in patients staff in 2008: 5 white non Hispanic and 1 Hispanic and other community settings (6%). Service users came with bone metastases (76%) than in other patients nurses, 12 Hispanic nursing assistants. (# 18) Length of from 20 Primary Care Trusts. On-going evaluation by (51%). stay on the current job ranged from 7 to 24 months, subsequent telephone interview shows that 94% of Conclusion: The quality of life of cancer patients was average stay: 21.6. (# 19) 1 planned to leave, and 2 said users found the advice given useful. 92% of calls were lower than in the general population, especially in field they were looking for another job. Most consider the resolved and/or an appropriate referral made. The need of physical, role and social function. The most job exciting (# 9), and a chance for personal growth (# to contact another OOH provider was avoided in 44% common symptoms were fatigue and insomnia. 8), but for 2 nursing assistants professional exchange is of cases. However, the intensity of the symptoms was mild in low (# 3), and for 2 nurses and 1 nursing assistant the Conclusions: The service provides a highly valued general. knowledge development is average (# 7). resource to patients/carers and HCP requiring symptom Conclusion: The interview showed the extrinsic management and/or drug advice OOH. The factors that need to be analyzed to identify turnover collaborative and holistic approach ensured that PE 2.S41 risks. Instead the anonymous multiple choice symptomatic patients were afforded appropriate timely questionnaire inquired into the intrinsic factors of the advice thus minimising unnecessary suffering. The “Therapeutics Drug Round” - Improving the turnover. The full analysis will help identify the factors quality of hospice inpatient prescribing which influence the intention to leave and will allow us to implement better operating strategies to retain PE 2.S39 Martin J R1, Midgley C1, Thebo Z1 competent nursing staff. 1St Francis Hospice, Romford, United Kingdom Care audit in the African setting Aim: To audit the effectiveness of the “Therapeutics PE 2.S37 Dempers C L1, DeFilippi K1 Drug Round” (TDR) as a means of correcting actual or 1Hospice Palliative Care Association of South Africa, potential prescribing errors. Are referrals to the specialist palliative care team Patient Care, Cape Town, South Africa Background: Despite the frequent lack of an on-site influenced by the team’s presence at multi- hospice pharmacist, prescribing in palliative care is disciplinary meetings? Aim: South African Hospices have been using the thought to be of high quality. In our unit a perceived APCA POS (African Palliative Care Association Palliative lack of routine attention to the monitoring of steroid McNeil L E1, Mitchell A2 Outcome Scale) audit tool with some very positive use led to the development of the weekly TDR in which sessions 1The Ayrshire Hospice, Palliative Medicine, Ayr, United outcomes. This tool was developed by APCA and drug charts are reviewed away from the patient but in Kingdom, 2Beatson West of Scotland Cancer Centre, validated by Kings College, London. The tool measures light of the patient’s medical history, prognosis and

Palliative Medicine, Glasgow, United Kingdom palliative outcomes over a period of 6 weeks of other relevant factors. (Saturday) receiving hospice care, starting with the very first home The TDR reviews several aspects of risk recognition and Aim: We reviewed the number and nature of referrals visit. Ten specific areas are measured; these include minimization related to prescribing, including: Drug Poster of patients with different tumours to the Specialist physical, psychosocial and spiritual symptoms. chart legibility; Congruency between the background Palliative Care Team (SPCT). The information is Methods: Under the auspices of the HPCA’s (Hospice and PRN (as required) opioid doses; Management of compared to Scottish mortality data detailing numbers Palliative Care Association of South Africa) patient care steroids (when started, for what indication, at what of deaths from cancer to assess whether the presence of portfolio, and in line with a grant from the Canadian dose, with what effect, when to change); Appropriate SPC at team meetings influences referral patterns. International Development Agency, the tool was prescribing of end of life PRN medication; Drug Method: Data is collected on patients referred to the introduced to a group of 50 South African hospices who interactions; Appropriate stopping of drugs SPCT, including diagnosis, reasons for referral and used the APCA POS to identify areas for quality Method: Retrospective notes analysis to audit the results of initial assessment. Microsoft Excel has been improvement within their home care programmes. quality of information documented at the TDR over used to describe the data. Results: In terms of results, it is too early to make any two time periods in January and April 2008. Data were Results: There were 830 episodes of patient care from comment on the quality of care broadly; but what is collected on a proforma and analysed against a set of

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 141 Poster sessions (Saturday)

standards for the TDR process. Data were also collected prescribed, and was therefore excluded. Aim: Analyse and evaluate the quality of nursing to analyse whether prompt (<24 hours) action was Results: records kept at hospital palliative care ward from the taken to correct any prescribing errors identified. A: Identifiers present 98%; point of content and formal perspectives. Results: Only 56% of eligible patients’ drug charts B: Patients name on inside of chart 100%; Method: The nursing records were analysed by the underwent the TDR process. Six (of 34) charts were C: Drug entries in capital letters 50%; structure of nursing process phases within the frames identified as requiring a re-write, of which only one was D: Frequency, route, date, signature 100%; of Slovak law. The number of 30 nursing records was completed within 24 hours. There were two (of 33) E: Allergies 100%; taken to the sample of research study. instances in which the PRN opioid dose required F: Chart number 83%; Results: From the content point of view the nursing altering, both promptly corrected. Action regarding G: Cross out dose changes, rewritten clearly 100%; records analysed proved that construction of steroid use was identified as necessary in 5 of 27 cases, H: Discontinue with date & initials 57%; documentation contributed to absence of holistic of which 4 were complied with. There was no I: Indications written in notes 76%; approach and records demonstrated poor use of documented evidence that potential drug interactions J: Duration of syringe driver 92%; evaluation instruments. The nursing diagnosis were assessed in any cases. Other results will be K: IV drugs written 100%; determination was based on relevant data in majority presented. L: Verbal orders by two nurses 100%; of records. All the possible spectrum of diagnostic Conclusions: The TDR is a useful tool in reducing M: Verbal orders countersigned & written on drug chart domains of NANDA - International Taxonomy II. was drug errors. This audit produced a change in 73%. not projected into nursing records analysed. Nurses management of the TDR process to improve its Of the 13 guidelines, 6 followed national guidelines, 6 were oriented to diagnose mostly the same problems effectiveness. were unique to the hospice but complemented national arising from the medical diagnosis not from individual advice and one contradicted national guidelines. approach to the patient. We consider being insufficient Standards 3 and 4 were met in 76% and 71% of cases if psychological, social and spiritual needs of patients PE 2.S42 respectively. are missed in records. Minor errors and deficits in the Conclusion: Overall adherence was good with one field of goals and outcome criteria formulation were An audit of antibiotic prescribing in a hospice notable exception - drug entries in capital letters. identified as well. The evidences of systematic inpatient unit We recommend: reevaluation of patient´s problems together with 1) guidelines changed to legible writing subsequent care plan modification were missed in Murray A S1, Hodgson A K1 2) guidelines changed so abbreviations & decimal nursing records. Identical results were presented in the 1Wigan and Leigh Hospice, Wigan, United Kingdom places not acceptable papers of more European researches concentrated on 3) anomalies must be recorded on pharmacy form even the same topic of interest. Infections are common in palliative patients, and may if information elsewhere in notes Conclusion: Appropriate documentation is more than cause significant morbidity. Appropriate use of 4) clinical staff to re-read guidelines & display copy in only the list of patient´s problems and needs. It antibiotics can improve quality of life. doctors’ office represents evidences whether at least standard nursing. Aims: Audit antibiotic prescribing in the hospice 5) re-audit in 1 year. inpatient setting. Source of funding: In-house Methods: Retrospective casenote audit of 75 PE 2.S46 consecutive admissions to inpatient unit, examining frequency of oral/parenteral antibiotic prescribing, PE 2.S44 Antibiotics in palliative care - Results from the indications for antibiotics, use of laboratory HOPE 2006 evaluation investigations, antibiotics used, duration of treatment, Audit of patient´s transfer letters on admssion to record of response and outcome. Prescribing was a specialist palliative care unit Krumm N1, Stiel S1, Pestinger M1, Elsner F1, Radbruch L1, compared with local trust guidelines. HOPE Steering Group Results: 19 of 75 admissions resulted in antibiotic Wallace E M1, Hayes D M1, O’Brien T1, Murphy M1 1University Hospital RWTH Aachen, Palliative prescription(25.3%). 1 patient recieved antibiotics on 2 1Marymount Hospice, Palliative Medicine, Cork, Medicine, Aachen, Germany separate occasions during admission. Malignant and Ireland non-malignant disease groups were represented. Background: The use of antibiotics in palliative care is Urinary tract infections(including pyelonephritis) were Introduction: All patients should receive a transfer discussed controversially. On the one hand antibiotic most common(60%), followed by pyrexia of unknown letter on moving from one institution to another as a therapies are considered essential for symptom control, origin(15%), chest infections(10%), cellulitis(10%) and standard of care, as this forms the principal on the other hand they often seem inappropriate and malodourous wounds(5%). Symptoms suggestive of communication between hospital and hospice-based aggressive. In an epidemiological study funded by infection were well documented(95%). Appropriate doctors. Patient transfer is important in the effective Deutsche Krebshilfe (DKH) the research workgroup of laboratory samples were obtained in 65% of cases. Trust coordination of services throughout the healthcare Deutsche Gesellschaft für Palliativmedizin (DGP) prescribing guidelines were followed in 45% of cases. system, but it is not always a straightforward process. collected data on diagnosis, therapy and course of Reasons for non-compliance were poorly documented, High variability exists in terms of the content of disease of palliative patients with infections for a period but included suboptimal dosing, alternative antibiotic transfer letters and they often lack structure and clarity. of three month during a phase of a Hospice- and indicated by culture results and need for alternative They frequently have a biomedical focus, omitting vital Palliative Evaluation (HOPE) 2006. formulation of antibiotic. Intended duration of psychosocial details. We noted that a number of Method: By a specifically developed questionnaire on treatment was recorded in only 4(20%)cases. patients admitted to our unit did not have an the use of and indications for antibiotics, decision Antibiotics were changed during treatment in accompanying transfer letter and the letters that did making on therapy and withholding or withdrawing of 3(15%)cases. Record of response to treatment was accompany patients,lacked many details required to therapy were collected. poorly documented. 75% completed an appropriate admit the patient and necessary for the provision of Results: In 47% of the N = 655 data sets with an course of antibiotic, 25% had the course discontinued ongoing care. optional indication for antibiotics the therapy was due to deterioration in general condition. Aims: To evaluate the level of information in letters administered, 10% registered withholding and 32% Conclusion: Antibiotics are frequently used in the accompanying patients on admission to a Specialist withdrawal. The most frequent reasons for withdrawal hospice setting. Local trust guidelines for prescribing Palliative Care Unit. were: reduction of overall status (9%), death (9%), are adaptable to the hospice setting, and duration of Methods: We retrospectively reviewed random charts inefficiency (5%) and patients´ wishes (4%). The treatment should be considered in advance. Reasons for of patients admitted to our unit. Transfer letters from beginning of therapy often underlies only the treatment, and response to treatment should be 20 charts were obtained. The data was retrieved and physicians´ decision competence. Withholding and documented. Hospice specific guidelines have been collated in a standardised format. withdrawal obviously needs also the support of the introduced to improve practice. Results: Twelve of the 20 charts reviewed had palliative care team. accompanying transfer letters. Eleven (55%) gave the Discussion: The success of antibiotic therapies seems patient’s primary diagnosis, 8 (40%) a list of co- to be difficult to review, because there are 49% missing PE 2.S43 morbidities and 11 (55%) a list of current medications. data which may due to missing outcome parameters in No letter made reference to the patient’s level of the context of palliative treatment concepts. In cases of Audit of inpatient prescribing by clinical staff on functioning,support network or insight into the illness continuation of antibiotic therapies until death, the inpatient unit and none made reference to follow-up plans. indications are missing, so that a prolongation of the Conclusion: There are significant deficits in the dying process might be discussed. While the start of an Wighton E1, Gammage L1, Hook M1, Kendall C1 quality of information contained in transfer letters,with antibiotic therapy is often decided by physicians solely, 1St Peters Hospice, Bristol, United Kingdom a paucity of psychosocial details in particular. This poor decisions processes resulting in withholding and communication we feel, compromises patient care. We withdrawal are discussed in the team which might be a Aims: aim to draft a transfer document, which we will advise hint on high sensitivity in taking responsibility. 1) Assess adherence to prescription guidelines by the primary referring team on how to complete prescribing staff on the Inpatient unit appropriately, and this will be required to accompany 2) Review & update Guidelines For Prescribing on the patients on transfer. We hope that this will improve PE 2.S47 Inpatient Unit communication between institutions and ultimately

sessions 3) Assess adherence to standard operating procedures serve to improve patient care in our unit. Audit of major heamorrhage across hospice, for prescribing support by pharmacists hospital and community care settings Methods: The first 25 patients admitted to each Bonwick H1, Roberts A L2, Howard J2, Mayland C3 (Saturday) inpatient unit during July 2007 were identified and PE 2.S45 notes collected (n = 42). The standards below were 1Marie Curie Hospice, Liverpool, United Kingdom, Poster audited. Analysis of nursing documentation at palliative 2Marie Curie Palliative Care Institute, University of 1) All prescription guidelines adhered to (A to M) care ward Liverpool, Learning and Teaching, Liverpool, United 2) Inpatient guidelines meet current national Kingdom, 3Aintree University Hospitals NHS prescribing guidelines Nemcová J1, Ziaková K1, Srámeková G2, Serfelová R1 Foundation Trust, Palliative Care, Liverpool, United 3) Pharmaceutical assessments carried out on 1Jessenius Faculty of Medicine in Martin, Nursing, Kingdom admission or when pharmacist next on duty Martin, Slovakia, 2Hospital Trstená, Palliative Ward, 4) Anomalies between pharmaceutical assessment and Trstená, Slovakia Introduction: Major haemorrhage occurs in less than drug chart are brought to the attention of the doctor 10% of patient with advanced cancer. Consequently and documented. The issue of nursing care documentation is an area of many health care professionals will not be familiar with All standards were to be achieved at 100%, except where huge discussions concerned with the quality of nursing the management of these catastrophic incidents. Little the guideline was not applicable, e.g. no IV drugs care management and improvement. evidence exists regarding the management of this life

142 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) threatening event. PE 2.S49 PE 2.S51 Aim: To examine the management of potential and actual major haemorrhage in the hospice, hospital and Withdrawn but not forgotten: Improving Study on the value of Plain Film Abdomens community care settings and develop regional palliative care in intensive care (PFA´S) in assessing constipation in palliative guidelines. care outpatients Method: A survey of hospice, hospital and community McConnell P C1, MacNeil C1 palliative care teams was undertaken to establish the 1Southern General Hospital, Intensive Care and Keane Campbell G1, Ely H2, Mannion E3, Waldron D3 incidence of exposure of Health Care Professionals to Anaesthesia, Glasgow, United Kingdom 1HSE West, Pallaitive Care, Roscommon, Ireland, patients who have a major haemorrhage and to 2Roscommon County Hospital, Palliative Care, ascertain current management strategies. A Background: The Liverpool Care Pathway (LCP) was Roscommon, Ireland, 3University College Hospital questionnaire was used to identify episodes in each of developed to care for cancer patients and address the Galway, Palliative Medicine, Galway, Ireland the care settings. Respondents were asked to describe needs of the dying. It has been expanded to non-cancer the management of patients who were at risk of having briefs, recently modified for use in intensive care units Aim: Constipation is an unpleasant symptom causing a bleed and those actually having a major (ICU). distress to many Palliative Care patients. Self reporting haemorrhage. Aim: To standardise delivery of optimal and personal of constipation may be unreliable as symptoms may be Results: Seventy four health care professionals palliative care in a general ICU through auditing attributed to disease. Investigation with plain film of responded from across the 3 care settings. Thirty four current practice and introducing the LCP. abdomen (PFA) may be considered overkill by (30%) respondents reported having managed a patient Methods: A multi-disciplinary team (MDT) reviewed radiology. The aim of this retrospective audit is to having a major haemorrhage in the last 5 years. The existing LCP documentation, adapted for patients in review our use of PFA´S to aid and assist in the optimal most common diagnoses amongst this group of ICU. The documentation was used to facilitate a management of constipation. patients were head and neck (21%), lung (18%) and retrospective audit of care received by 20 consecutive Methods: A retrospective study of all Palliative Care gastro-oesophageal (18%) cancer. All these patients died patients, in whom a decision provide end of life care Outpatients´ charts were assessed over a two year period within 1 week of the event. In 47% of these patients, had been made, after recognition that further to analyse the number of PFA´S requested; the outcome the possibility of haemorrhage had been discussed aggressive treatment was futile. The audit assessed of the result of PFA´S by radiology and by Palliative prior to the event. All respondents described the performance at 3 key stages; initial assessment, ongoing Medicine Physicians, and the treatment plan management of patients at risk of haemorrhage. care and after-death care. Within each of these stages, 4 recommended. Interventions used included the use of supportive domains were examined: physical, psychological, social Results: 85 patients were referred for outpatient measures and sedation with Midazolam being the most and spiritual. The results of the audit were collated and appointments, 29% (25 patients) had PFA´S and 3 commonly prescribed medication. sent to Liverpool for analysis and feedback. Education patients had repeat PFA´S. Altogether 30 PFA´S were Conclusion: Although rare, it is important to plan for followed and the results were presented to all ICU staff. ordered. 85% of films showed constipation requiring potential catastrophic haemorrhage, including the The LCP was launched and champions identified to treatment, having a direct impact on patient prescription of appropriate sedation. Simple measures provide on-going education and support for all ICU management. 10% had no significant finding and 5% also have a role to play. Using the results of the survey, staff. demonstrated sub-acute bowel obstruction.96% had regional guidelines were developed to guide health care Results: In each of the key stages examined metastatic disease, 24% of patients had colorectal professional in the management of potential and actual deficiencies were noted. Symptomatic relief was well cancer , 16% had pancreatic cancer with lesser major haemorrhage. provided. Pre-emptive prescribing to treat pain and percentages having, lung, renal , breast or bladder. 80% dyspnoea was present in 85% and 75% respectively. of constipated patients were on laxatives and 60% were Families were well informed, 95% understood that their on opioids. Of radiology reports 55% did not comment PE 2.S48 relative was dying. Measures to limit medical intrusion on constipation and there was a discrepancy of 45% to the dying process were poor. Blood sampling between Palliative Medicine Physician interpretation of Bowel Management: An audit of recorded bowel occurred in 95% on the day of death. Documentation PFA´S versus radiology. management practice addressing spiritual needs was absent in 85%. Conclusion: This study demonstrates that PFA´S are a Conclusion: There are deficiencies in our current valuable clinical tool in assessing the degree of Tracey G1, Kilcommons G1, Mcloughlin K1 palliative care practices. It is impossible at present to say constipation in our patient group. 85% of patients were 1Our Lady’s Hospice Limited, Dublin, Ireland whether these deficiencies are as a result poor constipated requiring intervention. Symptom control documentation or poor care. By using the LCP and was achieved speedily and therefore quality of life Aim: Constipation is recognised as a major problem for standardising documentation within our ICU we will improved. the palliative care population. This audit is the first step establish where the problem lies and address any As a result of this audit, more in-depth analysis of the to identify the strengths and weaknesses of how bowel barriers to achieving excellence in palliative care. findings may render more valuable information. This care is assessed and managed. Ultimately the aim is to audit may assist in ranking PFA´S as a relevent and utilise the results to evoke reflection and assist in the valuable clinical tool in addressing a symptom that development a comprehensive bowel assessment tool PE 2.S50 patients´ rank in the top three most uncomfortable to assist practice. symptoms. Method: A retrospective chart review was carried out Developing and collecting a minimum data set CONSTIPATION, moves on! on 57 patient charts (1/3 of the patient population). for palliative care The review covered a one month period. Charts were reviewed from Mosoiu D1, Pop S2, Sarosi A3, Dumitrescu M1 PE 2.S52 • 43 Specialist Palliative Home Care patients 1Hospice Casa Sperantei, Brasov, Romania, 2Perspective • 12 in-patients in Specialist Palliative Care Unit Medicale, Cluj- Napoca, Romania, 3Diakonia, Cluj- Evaluation of polypharmacy in home care and • 9 Day Hospice patients. Napoca, Romania ambulatory services in a palliative care unit Some patients were under more than one service during the month of August. No clear data was available concerning quality and Trombini L R B1, Barbosa L A2, Barbosa M F1, Nogueira T Results: 75% of these patients were prescribed provision of palliative care as each service provider was A3, Pereira L C3, Lima S G G1 analgesia. 63% opiate analgesia. recording and publishing different indicators. A united 1INCa - Instituto Nacional de Câncer, Hospital do • 26% of patients were not recorded as taking any set of indicators was also needed because there was the Câncer IV, Serviço de Farmácia, Rio de Janeiro, Brazil, laxative. political will to establish a national plan based on real 2INCa - Instituto Nacional de Câncer, Hospital do • 33% were taking 1 laxative figures. Charitable and public service providers united Câncer IV, Divisão Técnico Científico, Rio de Janeiro, • 30% were taking 2 different laxatives under the palliative care coalition agreed to the project. Brazil, 3UFF - Universidade Federal Fluminense, • 11% were taking 3 different laxatives. First year, 2007 a set of indicators was agreed; structural Faculdade de Farmácia, Niterói, Brazil There were 6 different laxatives prescribed in varying ones to be collected annually at the same date, and doses. process, output and outcome indicators regularly for Introduction: The main challenge of health • Polyethylene glycols (56%) of those on laxatives each patient (concerning type of disease, waiting time, professionals in relation to patients in Palliative Care is • Docusate sodium (34%) general wellbeing, pain, burden of care for the family, the control of symptoms that reduce their quality of • Senna (27%) number of visits/type of staff, days in care, place of life. It often requires the use of polypharmacy for this • Lactulose (20%) death). A database was produced and monthly updated control, and has been associated with adverse reactions • Magnesium Hydroxide and Liquid Paraffin (13%) with information from providers. Collecting process to drugs, medication errors, unable to adhere to therapy • Ispaghula Husk (4%) patients were on it prior to started difficult, after the first three months a second proposal and increased risk of hospitalization and can illness. meeting was needed to motivate people , to go in detail be aggravated by age, presence of other comorbidities, How bowel activity was recorded and the management over the definition of each indicator. From Julie 2008 in addition to the cancer amending the kinetics of actions were tabulated. The results from each service the information flows in regularly. All coalition drugs. area were analysed individually. members except 4 who are in the start up phase sent in Objective: To evaluate the indicators of polypharmacy Conclusion: The results have facilitated unit wide the data’s after more or fewer reminders. Over 1000 and indicators of clinical symptoms of patients referred reflection on how bowel care is managed. It was clear patients entries into the database up to date. There is a to the home care service and ambulatory service of

from the results of clinical areas where bowel part time dedicated admin staff to the project. In Jan palliative care unit. sessions assessment tools were used, although not 2009 a first analyses of data will be made, presented to Method: Analysis of data collected from medical comprehensive, facilitated a higher quality of the coalition and the global figures also to larger prescriptions, from January to May of 2008 of home

assessment. The next step is to develop a more audience. This is an important and challenging project care and ambulatory service, counting the number of (Saturday) comprehensive but user friendly bowel assessment tool. that needs to be ongoing. It provides extremely prescribed items and identifying the prescription with valuable data’s as global national figures (nr of patients higher and lower number of items. Poster care in different settings, workforce in palliative care, Results: There was observed an average was 4.6 per potential financial pressure put on the health system if prescription at home care and 6.6 in ambulatory. services like home care would be taken on board and Regarding the number of prescribed items, it was paid /visit as we have the total nr visits/year etc) but observed that prescription with greater number of also data’s concerning quality of care as each provider items was 20 and the lowest was 1 in the home care and can compare his performance with similar services in the ambulatory was 17 and 1 respectively. In patients eventual benchmarking could be initiated. who complained of pain there was a percentage of 34% The project is funded by NHPCO. for the home care and 50.6% for the ambulatory. Discussion and conclusion: Achieving the control of symptoms in palliative therapy often requires the use of

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 143 Poster sessions (Saturday)

medicines and involves polypharmacy. The control of a balanced approach to pain management. reduction in pain score ≥2 with at least no increase in pain recommended by WHO as the analgesic ladder Design: An extensive literature search was conducted to analgesics or a stable pain score with ≥25% reduction in with the use of associations such as: non-opioid identify all relevant information. Data regarding analgesia. Satisfaction was rated on a 4 point scale from analgesics, opioids and adjuvant, ranging from joint current opioid disposal methods and the major dissatisfied to very satisfied. pain (antidepressants, anticonvulsants, neuroleptics) to stakeholders were collected from two urban Canadian Results: 19 patients were recruited; 14 met inclusion support medication (anti-ulcer and laxative), which communities by means of discussions between criteria. Median age 62 and Karnofsky score 70. 18 makes prescription long, justifying the polypharmacy multidisciplinary health professionals. interventions (72% epidural blocks) carried out; 3 at ambulatory, where there was a higher percentage of Results: We will report on current opioid disposal patients underwent >1 intervention. 16 assessments patients with pain. methods and relevant gaps and barriers in two urban were analysed. Canadian communities. We have identified the major Patients followed up average 9, 22, 44 days post- stakeholders at local, provincial and federal level. We procedure. 81% had severe pain at assessment (mean PE 2.S53 describe our efforts to share the current literature and worst pain of 8.9 ± 1.2). Post treatment scores information with the public and the health care significantly reduced to 2.9±3.2, 3.4±2.9 and 3.1±3.2 Identification of polypharmacy in home care community. (P<0.05). Further evaluation showed CR 50% / PR 50% , service in palliative care unit Conclusion: Information in regards to this world-wide CR 36% / PR 57%, CR 38% / PR 50% at each time point. issue needs to be disseminated in order to forge an 6/9, 6/10 and 2/4 of patients showed a response to Trombini L R B1, Barbosa L A2, Castro L S1, Barbosa M F1, alliance with other similar stakeholders around the treatment when evaluated for IPAS. Pereira L C3, Lima S G G1 world to advocate for policies ensuring safe provision of There was significant beneficial effect across all 1INCa - Instituto Nacional de Câncer, Hospital do controlled substances. domains of interference (p<0.05). Pearson’s correlation Câncer IV, Serviço de Farmácia, Rio de Janeiro, Brazil, coefficients indicated strong relationship between pain 2INCa - Instituto Nacional de Câncer, Hospital do and functional interference (r = .725 week 1, r = .831 Câncer IV, Divisão Técnico Científico, Rio de Janeiro, PE 2.S55 week 6). 57% and 21% of 14 patients evaluated were Brazil, 3UFF - Universidade Federal Fluminense, very satisfied and satisfied with overall outcome of Faculdade de Farmácia, Niterói, Brazil Profile of the patients retrieved from intervention. 92% were very satisfied with the service pharmaceuticals anamnesis of a palliative care provided. Introduction: The polypharmacy is defined as the unit: A useful tool Conclusion: Observational studies can serve as useful simultaneous use of more than one product, and has adjuncts to randomised controlled studies to confirm been associated with adverse reactions to drugs, Barbosa M F1, Barbosa L A2, Pereira L C3, Lima S G G1 the efficacy of interventions, evaluate outcomes, medication error, difficulty in therapy adherence, 1INCa - Instituto Nacional de Câncer, Hospital do further plan service development and importantly to increased risk of hospitalization and drug interactions. Câncer IV, Serviço de Farmácia, Rio de Janeiro, Brazil, guide the design of new trials. Thus avoiding polypharmacy and the process identified 2INCa - Instituto Nacional de Câncer, Hospital do as “ prescribing cascade “, which is to add a drug for Câncer IV, Divisão Técnico Científico, Rio de Janeiro, each symptom, is one of the challenges of palliative Brazil, 3UFF - Universidade Federal Fluminense, PE 2.S57 care. Faculdade de Farmácia, Niterói, Brazil Objective: To identify the practice of polypharmacy in Bereaved relatives evaluation of a specialised home care, giving more rigidity in the criteria for the Introduction: One of the relevant activities to Clinical outgoing palliative care service in Denmark. A prescription. Pharmacy is the pharmaceutical interview or questionnaire survey Method: We conducted a quantitative study of the anamnesis, conducted with the hospitalized patients requirements of the months of May through October and their primary caregivers. Information obtained Lundorff L E1, Jønsson B H1, Frandsen L1, Olesen K1, 2007. Quantified those who had more than 7 through the questionnaire developed at the institution Hjortbak E2, Eriksen J2 prescribed medications. is able to determine the profile of hospitalized patients 1Herning Hospital, Department of Palliative Care, Results: It was preliminarily found that 33.3% of and their needs in terms of pharmaceutical orientation. Herning, Denmark, 2Holstebro Hospital, Department of patients have more than 7 prescribed medications, Purpose: To present the profile of hospitalized patients Quality and Development, Holstebro, Denmark indicating the high prevalence of polypharmacy. The in palliative care unit in June 2008 and the importance most used drugs were opioids (88.6%), laxatives of such information to the adequacy of given Can we learn from bereaved families about end-of-life (69.9%), non-steroidal anti-inflammatory drugs pharmaceutical guidance. care in advanced cancer? (92.4%), steroidal anti-inflammatory drugs (48.1%) and Method: Through standard questionnaire, was Aim: To analyse the experience of bereaved relatives in anti-ulcer (89.9%). collected information on the patient´s medical records order to improve quality of palliative care. Discussion and conclusion: Considering that 9 and through interviews with this or with their primary Methods: A questionnaire including qualitative and million of adverse drug reactions occur every year in caregivers. quantitative questions was sent out 6 weeks after the U.S.A., we believe that of all hospital admissions, Results: Of the population of hospitalized patients bereavement. The relatives were spouses, children or 25% are stemming from misuse of drugs and 28% from under palliative care cancer, interviewed in June 2008, other close relatives. Patients and relatives with <2 other problems related to drugs, increasing the 70% are younger than 64 years and only 30% are above contacts to the palliative team and relatives not financial burden of the process. Beside the kidneys this age group. Women represent the majority of understanding Danish were excluded. damage, the gastrointestinal disorders from the anti- primary caregivers. Among patients interviewed in the We asked about 8 different parts in the questionnaire: inflammatory utilization, leading to anti-ulcer drug period, the highest occurrence was the head and neck The contact to the team; The relatives role and utilization in order to reduce the discomfort of the cancers, 40%. As the level of education were involvement in the treatment; The support of the patient. Considering the pain cancer as one of the most interviewed illiterate patients, patients who could read relatives from the team; Shared care in the sickness damaging symptoms that affect the patients in the and write, despite not having completed the basic level period; The symptomatic treatment; The bereavement terminal stage, it is no surprise to frequent prescribing of education, and patients with high education and the time after; Needs for other health professionals; of opioids to control this symptom limiting, as well as completed. Demographic data. the use of laxatives for the management of frequent Discussion and conclusion: The large number of The team stated criterion for successful answering in constipation produced. The polypharmacy may be patients with tumors of head and neck, which at some the different categories in advance. The answers were inevitable, but above all, must rely on the vision stage of the disease have to use alternative routes of not available for the team members during the survey together of doctors, nurses and pharmacists to carefully administration of food and medicines, point to the period. evaluate the risk-benefit condition of each patient. importance of guidance on the administration of drugs Results: 123 questionnaires were sent out within 12 through these pathways. The level of education of months in 2006-2007. There were 86 responses ( patients, also serves as marked out the instruments for response rate: 72%).There was no significant difference PE 2.S54 pharmaceutical guidance for use at the time of hospital between demographics in responders and not outcome. Knowing the target audience for our responders. Safe disposal of opioids in the community attention and make the necessary adjustments to Answers which partly did not reach the stated goals for routines already established in the institution strategies success were: The health staff in the team used an Mirhosseini M1, Lemieux L2, Davies D3, Wren T4, are essential to guarantee the rational use of medicines, understanding language; Information about the Marcinkoski R5 the accession to pharmacotherapy and the patients’ condition was given at the right time; 1University of Alberta, Department of Oncology / humanization of pharmaceutical care provided. Information about the relatives’ options for payment Division of Palliative Care Medicine, Edmonton, during leave; Respect of the relatives’ individuality; Canada, 2Alberta Health Services, Calgary Health Coordination between the team and the GP; Region, Calgary, Canada, 3University of Alberta, PE 2.S56 Coordination between the team and hospice; Department of Pediatrics, Edmonton, Canada, 4Alberta Information about when the death was near; The Health Services, Pediatrics, Edmonton, Canada, 5Alberta A prospective evaluation of the effectiveness of relatives feeling prepared for the bereavement; A follow- Health Services, Edmonton, Canada interventional pain management procedures in up talk with the team members after the bereavement. cancer pain - A pilot study Conclusions: The methods in this study could identify Aim: Opioids and other controlled substances are areas lacking in the specialised palliative unit in end-of- Michael N1, McGonagle C2, O’Driscoll F2, O’Brien T1, sessions important tools in symptom management. The volume life care and bereavement. The results from the relatives of prescribed opioids has increased significantly since Browne J2 experience were taken into account in the further work the 1990s when the use of opioids for chronic non- 1Marymount Hospice, Palliative Medicine, Cork, in the department. 2

(Saturday) cancer pain was accepted by the medical community. Ireland, Cork University Hospital, Pain Management This process has helped many patients around the Services, Cork, Ireland Poster world to function optimally, however has also created significant problems in regards to controlled substance Aim: A quality assurance study to characterise the effect misuse, abuse and diversion. Our clinical experience in of interventional procedures as evaluated by the short the palliative population has raised similar concerns. In form Brief Pain Inventory (sfBPI), to assess patient order to raise awareness to this rapidly growing satisfaction with overall outcome and service provision. problem, the “Safe disposal of opioids” Methods: Consecutive cancer patients referred to the Multidisciplinary Committee was formed in Alberta, pain service over 5 months followed up at 1, 3, 6 weeks Canada. This committee strives to add to the current post-procedure. Outcomes defined: Complete scant literature in this area as well as coordinating its response=pain score of 0, clinical meaningful activities with other disciplines with similar interests response=reduction of pain score ≥2 or ≥33% of pre- nationally and around the world. We hope to promote treatment score, integrated pain and analgesic scores=a

144 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

PE 2.S58 The identification of “terminal” character of patient´s Results: The CRF patients feel exhaustion and fail the condition increase the chance of adequate clinical care motor task earlier. EMG power frequencies decrease less Can the outpatient treatment in palliative care at the end of life. in CRF vs. healthy controls from the minimal to more be ensured by the present care providers in severe fatigue stages. The power frequencies, especially Germany? mean power frequency at the minimal fatigue stage in PE 2.S60 CRF, resemble frequency values at severe fatigue in Laske A1, Eichstädt C1, Diemer W1 healthy controls. Thus, further fatiguing the muscle 1University of Greifswald, Dept. of Anaesthesiology, Does early palliative care consultation in the may be difficult. Early task failure may be primarily Intensive- and Palliative Care, Greifswald, Germany emergency department affect hospital length of from an inadequate central drive to fully activate the stay? muscle. Aim: The subspecialisation in Palliative Medicine was Conclusions: CRF EMG frequency was lower at the introduced in Germany in 2006. The new law on Waselewsky D1, Singh A2, Burn J3, Zalenski R2 beginning of a task. Muscle fatigue was less in CRF specialized palliative home care (SAPV = Spezialisierte 1Sinai Grace Hospital/Wayne State University, Dept of during SC. CRF has greater central and less peripheral ambulante Palliativversorgung) by mobile palliative Emergency Medicine, Detroit, United States, 2Wayne fatigue than normal individuals. care teams was implemented as a right for all patients in State University, Emergency Medicine, Detroit, United April 2007. To assess the quality of palliative care in States, 3Sinai Grace Hospital, Emergency Medicine, Mecklenburg-Western Pomerania (Germany), we sent Detroit, United States PE 2.S62 questionnaires to physicians in hospitals and private practices. The results can help to realize SAPV in our Aim: To determine whether the early initiation of a Medical ozone oil suspension applications heal federal state. palliative care consult (PCC) in the emergency osteonecrosis of the jaws (ONJs) in patients Methods: With the support of the Board of Physicians department (ED) compared to routine in-hospital treated with bisfosfonates (BPs). Preliminary in Mecklenburg-Western Pomerania the questionnaires consultation is associated with a reduction in overall results of a single institution protocol were send to 600 randomly selected physicians in April hospital length of stay (LOS). 2008. They contained 25 questions concerning Methods: This study was a retrospective chart review of Ripamonti C1, Maniezzo M1, Ghiringhelli R2, Fagnoni E1, knowledge, attitudes and skills in palliative care and PCC patients seen between November 8, 2007 and Campa T1, Mariani L1, Cislaghi E1 cancer pain therapy. These questionnaires based on August 6, 2008 at a large inner city community hospital 1Fondazione IRCCS- Istituto Nazionale dei Tumori, those of two previous surveys in 1997 and 1999. Until in the US. A convenience sample of 30 patients in the Milan, Italy, 2Sanipan, Varese, Italy today more than one third of the questionnaires have ED initiated PCC group (EDPCC) and 31 patients in the been returned (n=207). hospital floor initiated PCC group (HFPCC) were ONJ is an uncommon condition mainly reported in Results: However only half of the physicians has selected. The primary outcome was the total hospital oncological patients receiving BPs. We previously participated in training of cancer pain therapy and LOS measured in hours from ED admission to hospital demonstrated that routinely application of preventive palliative care. One third of the physicians have no death or discharge. Other outcomes included percent measures before, and during BP therapy, lead to a information about the WHO analgesic ladder. Likewise hospice referrals and change in code status from full reduction of 75% in the incidence of ONJ (Ripamonti one third of them express the opinion that narcotics code to DNAR. et al., Ann Oncol, 2008). However, a therapy is still should only be prescribed by specialists. Nearly half of Results: The mean age of the combined group of 61 needed in order to treat patients who develop ONJ. the physicians are uncertain in the use of narcotics patients was 70 years (range 57-84, SD 18.1); 62% were Recently, we investigated the effect of the localized because of a lack of experience. Compared with the women, and 93% were black. The EDPCC and the application of a medical ozone oil suspension (O3 oil) previous surveys the results did not show significant HFPCC groups (respectively) were comparable in mean on ONJ lesions. Ten cancer patients with active ONJ changes over the years. age (68.0 vs. 70.9, p=.54), gender (56.7% vs. 67.7% with lesions < 2,5 cm, in good clinical condition were Conclusion: The results show lacks of knowledge and female, p=0.27), proportion transported from the treated with antibiotic therapy 10 days prior the the therapy does often not meet the standards of nursing home (43.3% vs. 41.9%, p=0.51), vital signs initiation of the treatment consisting in 10 applications palliative care or cancer pain therapy. Due to our (systolic BP 116 vs. 115mm Hg, p=0.9), Charlson of O3 oil on ONJ lesions, at 3 days interval. Herein we evaluation multiprofessional Palliative Care Teams are comorbidity index (7.3 vs. 6.6, p=0.36), and Karnofsky report the results obtained in the first 10 patients needed to implement specialized palliative home care scores (26.7 vs. 22.6. p=0.15). The primary outcome was enrolled with a follow up of at least 4 months, while (SAPV) as a standard benefit of the public health that the EDPCC had a mean hospital LOS of 6.5 (SD: the second stage of the trial, according to the Simon insurance, additional to the existing general palliative 5.3) days vs.11.5 (SD: 7.9) for controls (P=0.005). For the two-stage design, is currently ongoing to better estimate care. Intensified training of every student and each EDPCC group, 47% were enrolled in hospice compared the response rate. active physician is a prerequisite. to 74% for control (p = 0.026); 30% of the EDPCC group Patients with breast cancer (n=7), prostate cancer (n=1), changed code status from full code to DNAR compared NHL (n=1) and multiple myeloma (n=1) had previously to 39% of the control. received N-BPs treatment in the absence of odontoiatric PE 2.S59 Conclusion: PCCs initiated in the ED (compared to preventive measures. The mean time between the hospital floor) were associated with a significantly diagnosis of ONJ and the first O3 oil application was Cardiopulmonary resuscitation (CPR) in decreased hospital LOS, but fewer patients referred to 360 days. All the patients treated showed complete advanced cancer patients in a comprehensive hospice. Further studies are needed to assess whether responses, in terms of radiological lesion disappearance cancer center in Czech Republic - Retrospective ED initiated PCCs are associated with shorter hospital with complete reconstitution of oral tissue, which was analysis of decision making in end of life care of LOS. achieved with 3 applications in 3 patients, 4 100 cancer patients applications in 4 patients and 10 applications in 3 patients (the mean recovery time was 26 days). 8/10 Slama O1, Vyzula R2 PE 2.S61 patients developed spontaneous sequestrum with 1Masaryk Memorial Cancer Institut, Palliative Care expulsion of the necrotic bone. Clinic, Brno, Czech Republic, 2Masaryk Memorial EMG frequencies changes in cancer related According to these results few application of medical Cancer Institut, Brno, Czech Republic fatigue ozone oil suspension can rapidly led to complete ONJ resolution. Further cases are required to confirm these Aim: Asessment of process and documentation of Davis M P1, Yue G2, Wyant A2, Kisiel-Sajewicz K2, Seyidova- data, which seem to indicate that ONJ is not only a decision making about CPR in hospitalised cancer Khoshknabi D3, Walsh D3 preventable but also a manageable and curable patients. 1Cleveland Clinic, Department of Solid Tumor condition. Method: Retrospective analysis of medical and nurse Oncology, Taussig Cancer Institute, Cleveland, United charts of 100 cancer patients who died consecutively in States, 2Cleveland Clinic, Neural Control Laboratory, a cancer hospital. Department of Biomedical Engineering, The Lerner PE 2.S63 Sample: 100 in- patients, aged 61 years (range 24-82), Research Institute, Cleveland, United States, 3Cleveland 90 with metastatic, 10 with localised cancer. In 67 Clinic, The Harry R. Horvitz Center for Palliative Improvement of Quality of Life (QoL) of patients patient the transition from tumor oriented to Medicine, Dept. of Solid Tumor Oncology, Taussig with advanced haematological or oncological symptomatic palliative approach have been Cancer Institute, Cleveland, United States diseases at a palliative unit documented. In 33 patients the basic approach and goal of care have not been documented. Aims: Impaired neuromuscular junction transmission Passini A1, Praßl S1, Hayn-Völkl E1, Gruber K1, Kainz H1, Results: From the 100 consecutive deaths, in 11 function and central activation failure occur in cancer Keil F1 patients CPR had been started, but all resuscitated related fatigue (CRF). EMG frequency reflects afferent 1LKH Leoben, Palliativmedizin, Leoben, Austria patients died within next 48 h. In 89 patient CPR was feedback inhibition and central modulation. We not attempted. In only 46 of these patients we found in hypothesized that muscle EMG signals during sustained Aims: A fundamental challenge of the palliative the record explict reason, why the CPR had not been sub-maximal contraction (SC) in CRF would differ from medicine is to improve quality of life. In this study we started. In 30 of these patients the clinical state of normal individuals The purpose of this study was to show the efficiency of a palliative care unit and which patient has been described as „terminal“ and this was evaluate EMG power frequencies recorded during a patients profit better. given as reason not to start CPR. The CPR has been prolonged muscle contraction and determine the level Methods: From August 07 until July 08 Quality of life

discussed in advance with the patient in only 2 cases of muscle fatigue in CRF and healthy controls. was assessed in all patients, who were treated at our sessions and with patient family in 8 cases. Patients described in Methods: Twelve patients (56.3 ± 12.4 years old) with palliative care unit at the day of admission and the day medical charts as “terminal” had had significantly advanced solid cancer (lung, breast and gastrointestinal of dismission. Therefore we used the EORTC QLQ C15

lower chance to be resuscitated, transfered to ICU in last cancer) and CRF, and 12 age- and gender-matched PAL questionnaire. From this patients 24% had an (Saturday) days of life. “Terminal” patients had significantly healthy controls participated in the study. CRF was Gastro/Intestinal Cancer, 20% a haematological disease, higher average dosis of opioid analgesic, anxiolytics and assessed by having the subjects respond to the Brief 22% a gynaecological cancer, 8% a ear-nose-throat Poster antipychotics in last 3 days of life than those not Fatigue Inventory (BFI). Surface EMG signals were cancer 11% an urological cancer, 2% a pancreatic characterised as “terminal”. recorded continuously from two elbow flexor muscles: cancer, 4% a lung cancer, 5% a kidney cancer, 3% other Conclusion: The decision “not to attempt biceps brachii (BB) and brachioradialis (BR), and the cancer and 1% a non malign disease. From this 252 resuscitatation” is in our cancer center in majority of elbow extensor: triceps brachii (TB). patients 30% died at the station and 70 % could be cases unilateral desicion of health profesionals that Analysis: Mean, median and peak power and the discharged. “CPR is not indicated”. The role of the patient in this corresponding frequencies of the three muscles at the Results: The main reason for admission was pain, process is weak. beginning, middle and end of the SC. Data compared Nausea and Fatique. Median duration of treatment was The process leading to this of decision is in general very between groups, among the stages and muscles using 9 days. The symptom scales for fatique, nausea and poorly documented and available data show lot of ANOVA. Statistical significance was designated at P < vomiting, insomnia and constipation showed a inconsistency in clinical and ethical decision making. 0.05. significant improvement between admission and

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 145 Poster sessions (Saturday)

discharge whereas there was only a minimal hypercoagulation do not correlate with prognosis to IM but less advantageous than IV administration. improvement in appetite loss and dyspnoea. The according to MSKCC criteria. Further studies are required to comfirm these results. physical scales showed stable points, whereas the In Kaplan-Maier analysis, patients with No outside funding was received for this study. emotional scales also showed a significant hypercoagulation had a significantly shorter overall improvement. Furthermore there also was a significant cancer-specific survival than patients with normal improvement in the overall QoL for all patients. The coagulation. Median survival was 8.2 months and 14.6 PE 2.S69 overall QoL in patients, who had a lower score at the months, respectively (P=.0011; HR=0.5). Disease control time of admission increased significantly, while there rate (overall response + stable disease) was significantly A comparison of bereavement services provided was only a minimal increase in patients who had a higher in patients with normal coagulation: 71.4 versus in hospice and palliative care settings in higher score. 42.9% (P=.003). Australia, the UK and the US Conclusion: Treatment at a palliative care unit Conclusions: Hypercoagulation disorders were found improves QoL in a relativ short period of time and it to be prognostic factor for response rate to systemic O’Connor M1, Payne S2, Demmer C3, Abbott J-A1 allows to discharge the patients into the outpatient therapy and survival in patients with metstatic RCC. 1Monash University, Palliative Care Research Team, setting in a high level of percentage. Although they School of Nursing & Midwifery, Melbourne, Australia, suffer from an advanced disease, we could reach stable 2Lancaster University, International Observatory in End physical functions and could improve the PE 2.S66 of Life Care, Lancaster, United Kingdom, 3City symptomatical and emotional functions during University of New York, Department of Health Sciences, hospitalisation. Furthermore we could show that Calcium channels blokers as adjuvant of opioid New York, United States patients, with a lower quality of life at admission can analgesia profit better from hospitalisation than patients with a Background: Bereavement support services are higher one. Kosson P1, Klinowiecka A1, Jarosz J2, Lipkowski A W1 recognised as an important part of hospices and 1Polish Academy of Sciences, Medical Research Centre, palliative care services. Exploratory surveys on the Warsaw, Poland, 2M. Sklodowska-Curie Memorial nature of such services have been conducted in recent PE 2.S64 Cancer Centre and Institute of Oncology in Warsaw, years in several countries, including the United States, Department of Palliative Medicine, Warsaw, Poland United Kingdom and Australia. The cleo90 subcutaneous needle system for Aim: The aim of this research was to compare and patients on a palliative care unit Opioid receptor system is traditionally receiving major contrast bereavement supports offered by hospice and attention because of its involvement in acute pain palliative care services across 3 countries. Schneider M1, Hoffmann M1, Beyer A1, Lorenzl S1 signals perception and transmission. Opioid system is Method: From the published results of national 1LMU Munich, Palliative Medicine, München, Germany involved in concerted interaction with other systems surveys of bereavement services in hospice and including ion channels. In chronic pain and/or its palliative care settings previously conducted in the US, Aim: In palliative medicine the subcutaneous infusion medical treatments these systems are non equally UK, and Australia, data were analysed for of drugs is an established way of application. Normally, activated that resulted in neuroplastic adaptation and commonalities and differences. The reported butterfly needles are used for this process. Since the use destabilization of neurohomeostasis. Very likely, descriptive statistics were compared and the survey of it may have some pitfalls, we prospectively discrepancy between activities of neurohormonal authors verified that the data were accurate. Additional investigated the cleo90 subcutaneous needle system receptor and calcium channels is the reason of information was sought where necessary and which previously has been used for subcutaneous tolerance development to analgesics. Possible solution agreement was reached regarding the main findings. infusion of insulin. of this problem could be a coapplication of opioid Results: Through this comparison a number of Materials and methods: We prospectively analgesics with calcium channels blockers. We present common aspects of service delivery were highlighted. investigated the use of the cleo90 subcutaneous needle the synergy between morphine and flunarizine in Common difficulties were also found, including the system at our palliative care unit for patients with animal model of acute thermal pain. numbers of nurses delivering bereavement care, the malignant and non-malignant diseases. Patients should Experimental data: Morphine and/or flunarizine or low numbers of paid staff, variations in specialist be eligible to receive subcutaneous infusions. saline (control group) have been injected training, insufficient levels of funding, and the lack of Results: We have included 45 patients so far. The mean intraperitoneally to mouse. Hot water (55°C) tail flick the use of validated bereavement assessment tools. age was 70 ± 12 years and the relation m : f = 21 : 24. has been used as nociception evaluating test. Conclusions: Bereavement support is an important Needles could be used for a mean time of 5 ± 2 days Nociception has been measured at 5, 15, 30, 60 and 120 aspect of hospice and palliative care service delivery. In (time span 2-12 days). The process of needle application min post injection. offering preliminary suggestions on how to improve has been without complications. None of our patients Results: Morphine at dose - 2 mg/kg reduced this component of care, in all three countries further had severe side effects. The use of medications or nociception (app. 30% MPE - maximal possible effect) research and policy development is required to address combinations of drugs in a syringe driver or pump Flunarizine in doses up to 20 mg/kg was not the common difficulties. system has been possible. The only problems we significantly active as antinociceptor. Combinations of observed have been with free running infusions (e.g. morphine (2 mg) and flunarizine (10 mg) provided NaCl). There sometimes a local induration of the skin significant synergic potentiation of antinociception. All PE 2.S70 has been observed, which has been reversible after effects were reversed by naltrexone. removing of the needle. Conclusions: Calcium antagonists itself are weak Living with loss in a social world: A curiosity Conclusion: analgesics. However in combination with opioids about what people find useful (and ´un-useful´) 1. The use of the cleo90 subcutaneous needle system is provided significant synergic potentiation of opioid in managing their loss easy and safe. analgesia. Coapplication of opioids with calcium 2. The application of drugs alone or in combination is channels blockers may reduce requirements for opioid McLaughlin K M1 possible. analgesics and in consequence reduce development of 1The Hospice of St Francis, Supportive Care, 3. The needle system can be used for a longer time than tolerance and side effects. Berkhamsted, United Kingdom the previously described one day. Acknowledgement: Project is financially supported 4. Free running infusions must be used with some by EU grant “Normolife” (LSHC-CT-2006-037733). Aim: Assumptions about how one ‘should’ feel or caution ovthe this system. behave when facing loss affects those supporting the bereaved and the bereaved. This research aimed to PE 2.S67 explore what bereaved people experience as useful and PE 2.S65 ‘un-useful’ responses towards them whilst managing Pharmacokinetics of gentamicin subcutaneous grief and to increase understanding of how Disorders in hemostatic system can be target for administration, an N of 1 practitioners and society might usefully support people antitumor treatment of metastatic renal cell facing the loss of someone close to them. It was hoped carcinoma (RCC) Walker P W1, Basic Science and Translational Research to encourage practitioners to appreciate the advantages 1MD Anderson Cancer Center, Palliative Care and of adopting a systemic approach within a palliative care Tsimafeyeu I1 Rehabilitation Medicine, Houston, United States setting. The theoretical background is Social 1Kidney Cancer Research Bureau, Moscow, Russian Constructionism and Coordinated management of Federation Introduction: Expanding the subcutaneous route (SC) Meaning (CMM)- this challenges traditional ‘stage’ to allow SC administration of antibiotics is a novel idea theories of grieving based upon assumptions of ‘letting Background: In our translation study we suggested that would allow further options to treat infections in go’ of the deceased person to be necessarily helpful. that abnormal coagulation could be a negative the hospice setting. Methods: In-depth interviews were carried out with 2 predictor for response to medical treatment and Method: A single healthy male volunteer received a participants, bereaved through the death of someone survival among patients with metastatic RCC. 1mg/kg SC infusion of gentamicin 76mg in 50ml D5W dying of a terminal illness. The ‘CMM Revised Patients and methods: 289 previously untreated via an abdominal SC needle site, over approx. 25 min. Analytical Model’ (Cronen, 2004) was used as a method metastatic RCC patients were evaluated for Serum gentamicin levels were obtained on the of analysis to explore how participants attributed identification of disorders in coagulation system. Data following schedule: at the end of infusion, hourly X 4, meanings to coordinated interactions between

sessions were compared with group of T1 stage patients without then q 2 h X 6, and finally q 4h X4. themselves and others. metastasis. 56 metastatic RCC patients with or without Results: The infusion was tolerated well with only mild Results: Participants were found to be positioned abnormal coagulation were randomized to receive low- discomfort and no tissue injury. Pharmacokinetic within unspoken rules (or ‘social constructs’),

(Saturday) dose immunotherapy. Baseline characteristics were well analysis of the serum levels revealed: time to peak commonly associated with bereavement and built balanced. Clinical response was assessed by RECIST. (tpeak): 0.8 h, concentration at peak (Cpeak): 2.1 mg/L, upon multiple hierarchies of contexts (e.g. cultural, Poster Results: Abnormal coagulation was present at elimination rate constant (ke): 0.173 h-1, half life (t1/2): family beliefs, normative theories of grief) embedded treatment start in 40% of patients. Serious disorders 4.0 h, area under the curve (AUC): 15.04 mg/L*h, within moral obligations. Interactions were illustrated were revealed in 68% of patients. Rate of clearance (Cl): 5.05L/h, volume of distribution (Vd): 29 to have a reflexive effect and what constituted as useful hypercoagulation was significantly higher in group L (0.38 L/kg). or ‘un-useful’ in managing loss was influenced by with advanced disease (median of fibrinogen 6.2 vs. 3.4 Conclusion: Time to peak level was similar to findings multiple levels of embedded contexts and meaning was mg/dl for metastatic and early stage renal cell previously reported for IM administration. Compared dependent on the context in which it occurred. The carcinoma; P=.017). Abnormal coagulation was strongly to reported findings for IV administration the half life results supported the notion that there is no one associated with a number of metastatic sites (2 and of our profile is longer, 4 h vs 2 h seen with IV use. correct way to think or respond to people facing loss more metastatic sites vs. 0-1 (P=.001). Patients with Volume of administration SC was greater than that but rather, beliefs and ideas that might be more or less high extent of hypercoagulation had significantly reported for IV use. These data suggest that the helpful. higher number of metastatic sites (P=.02). Levels of pharmacokinetics of gentamicn SC may be comparable Conclusion: Social constructions of both the bereaved

146 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) person and others have associated consequences for PE 2.S73 PE 2.S75 meaning, relationships and actions and these influence the way in which loss was managed. What to tell children and not to tell, if their Sharing the journey: Role modeling as a teaching parents are dying with terminally ill disease strategy in palliative care

PE 2.S71 Rithara S M1 Perry B1 1Nairobi Hospice, Nursing, Nairobi, Kenya 1Athabasca University, Center for Nursing and Health Settling with troubling memories: Exploring the Studies, Edmonton, Canada need and possibilities for assisting bereaved Children are growing human beings and needs to families with ‘difficult’ relationships after death understand/informed what is going around them. A The aim of this qualitative research study was to child understanding of death is influenced by age describe the role modeling behaviours of exemplary Tong F1 related developmental stages Capital Health [2006]. palliative care nurses and the effect on student and 1Hospice Palliative Care Association of South Africa, Purpose; to explore if it is wise to let the children know novice nurses. Patient Care, Pinelands, South Africa that their parents are terminally ill/dying. The research paradigm is phenomenology. The Children often perceive that something is wrong even participants were palliative care nurses identified by Aim: In our support to bereaved people, we find that if they are not told, because routines are disrupted and their colleagues as outstanding role models. A their relational contexts are often characterised by people close to them may look and act differently. purposive sample of 8 nurses participated. Data were harmful, abusive or destructive relationships. However, Working at a palliative care/ Hospice set up, it has come collected by interviewing and observing participants literature pertaining to grief support is largely based up strongly that it is better to explore with the children over a period of 40 weeks for 8 hours per week. Two upon assisting people in relationships that were of what they understand of the sickness and death first, hour interviews with each nurse were recorded and predominantly loving and warm, resulting in the since our culture forbid adults to discuss death with transcribed. Field notes were used to record marginalisation of difficult and/or abusive children especially if it involves parents. Survey done at observations. Data were analyzed systematically for relationships, and possibly the lack of appropriate the hospice, shows that three [3] out of five [5] children themes by attending to three points of reference: support and care. cope well with the information being paced well and recurrence of ideas within the data, repetition, and Method: A random sample of bereaved families will be relating the situation to the previous one especially of forcefulness with which an idea was presented. The drawn who will be interviewed according to a illness/death such as loss of a grandparent. study abided by the Tri-Council Policy Statement on structured questionnaire. The questions will include Children who are supported, cared for and loved, with the Ethical Conduct for Research Involving Humans. their perceived experiences of their relationship based extra kisses, hugs and time spent together cope well The role modeling behaviours discovered included: on a rating scale. Questions will also include obtaining with bad information than those left without attending to the little things, making appropriate information on how bereavement support might be information. Two [2] out of five [5] don’t cope due to connections, maintaining a light-hearted attitude, and more appropriate to their particular situation. lack of proper support and the way information are affirming others. The major effects of role modeling on Relevance: Expand and develop appropriate support given and this affect them in later life. Allowing student and novice nurses was affirmation of their structures to bereaved families that had experienced children to express their feeling and answering value and learning the tacit. The exemplary nurse role ‘difficult’ and/or abusive relationships, after death. questions simply and honestly has shown improvement models were also impacted by the experience as it Conclusion: The findings of these results will be in coping with illness/ death. Half of patients cared for helped them to find meaning in their work by sharing indicated and a justification put forward as to whether by the hospice team shown that their children were the journey. these relational contexts require more attention and being left out of the correct information. Children need In conclusion, this study has practical implications for focus. Based on narrative practices ideas, some of the a lot of support and understanding especially when those who educate palliative care professionals. Role commonly asked questions will be addressed: These bereaved by parent and know they are cared for, modelling is a strategy for teaching many of the include: understood and can contribute in any way. difficult to teach skills and attitudes necessary to - What if the person who died was physically, sexually, Conclusion: We need to change our African culture becoming an exceptional palliative caregiver. For or emotionally abusive? and start involving our children in decision-making example, how is it possible to teach someone that using - How do re-membering practices apply to situations and let them understand what is going on and there is silence is a powerful skill in caring for a dying person where the death was suicide or murder? need for further researches on parent’s illness and other than by role modeling? How can one teach a - What if the overriding experience after death is relief? death. novice how to make an appropriate therapeutic Is this all right and how do we assist people? connection with a family member other than through role modeling? This study revealed the importance of PE 2.S74 cultivating role models as educators in palliative care PE 2.S72 both for the learners and for the caregivers. Life with your children after the death of your You’ve forgotten us! How to balance the partner competing demands of paediatric palliative care PE 2.S76 and bereavement support needs. Life Force team Murphy I1, Hogan T2, Gordon E2, O’Sullivan T2 share their experiences of running two memory 1St. Patrick’s Hospital (Cork) Ltd., Bereavement & Survey of palliative care concepts among medical days Family Support Services, Cork, Ireland, 2Marymount students and interns in Austria: A comparison of Hospice, Cork, Ireland the old and the new curriculum of the Medical O’gorman B1, Portnoy S1 University of Vienna 1Community Children’s Nurse, Life Force Team, The Specialist Palliative Care service in Cork caters for London, United Kingdom approximately 35 patients each year who are parents of Pohl G M1, Marosi C2, Dieckmann K U3, Goldner G3, Elandt young children. Research evidence suggests that the K4, Hassler M1, Ludwig H P1, Watzke H5 Life Force is a community based paediatric palliative single biggest predictor of good outcome for bereaved 1Wilhelminenspital, Center for Hematology and care team established in central London in 2003. The children is the coping of the surviving parent.1 As a Oncology, Department of Internal Medicine I, Vienna, multidisciplinary team comprises a specialist nurse, a result, the bereavement team endeavours to support Austria, 2Medical University Vienna, Department of community children’s nurse, a play specialist/youth surviving spouse by facilitating a support group for Internal Medicine I, Division of Oncology, Vienna, worker, respite nursery nurses, psychologist and surviving parents each year. The group is run by a Austria, 3General Hospital, University of Vienna, paediatric palliative consultant. There is no designated senior social worker and a volunteer who has been Department of Radiotherapy and Radiobiology, Vienna, bereavement worker. Our aim is to provide a gold widowed with young children and who attended a Austria, 4Medical University Vienna, Division of standard palliative care service for children, in their support group after the death of their spouse. The Oncology, Department of Internal Medicine I, Vienna, preferred place of care, which starts at diagnosis and group meets on a monthly basis to offer bereaved Austria, 5Medical University Vienna, Division of continues through the bereavement process. parents an opportunity to meet with others in similar Palliative Care, Department of Internal Medicine I, Fourty four children have been supported by Life Force circumstances. Group members can exchange Vienna, Austria during end of life care. Some of these families we have information and ideas about coping with their loss and known for a number of weeks, some for several with helping their children to grieve. This is the eighth Background: To improve the level of awareness in months, even years. Alongside this, Life Force year in which a group is being held. palliative care concepts, the new curriculum at the continues to provide ongoing care for 30 children with Much of the available literature in pamphlet form University of Vienna includes sixteen hours of palliative a life-limiting diagnosis and complex care needs. which addresses loss either deals with loss from an care education. The old curriculum did not include One of the biggest challenges facing Life Force is to adult’s or from a child’s perspective. There is a lack of palliative care education. balance the competing demands of the active caseload appropriate material which directly addresses the issue Aim: To compare the level of awareness in palliative whilst ensuring adequate bereavement support to the for parents of dealing with their own and with their care concepts among 4th year students of the new families. children’s grief. Four former members of the surviving curriculum of the University of Vienna with interns Through this presentation we will describe how a parents programme volunteered to produce a leaflet for who finished their studies in the old curriculum. successful bereavement program has been established. newly bereaved spouses drawing from their own Material and methods: 440 medical students in their This includes a sibling support program, starting prior experience of loss. This leaflet aims to highlight issues 4th year and 149 interns participated in a survey study.

to the death and continuing for six months to a year that may arise for parents in the first weeks and months Data were collected after the survey and the responses sessions after the death.We will also describe how a memory after a loss and offers some useful suggestions. It also were analyzed. day has been developed, outlining the philosophy and aims to reassure newly bereaved spouses that others Results: Data analysis consists of completed survey

aims for the day. Part of the presentation will explain have had their experience and that they will learn to obtained from 83% and 67% of the students and (Saturday) the organisation and planning needed for a memory cope with their situation. The project is a unique and interns. We observed that students reported higher day, the role of volunteers and parents and how valuable collaboration between a hospice based social theoretical knowledge of palliative care concepts as Poster parental feedback has helped structure future events. work team and volunteers who support the compared to interns, whereas interns were better in bereavement programme. performing practical aspects of palliative care. A significant percentage of students and interns would like to learn more about palliative care in their curriculum, although this was more present among interns (72.7% students and 92.6% interns, p<0.0001, respectively). Conclusion: Although palliative care education is already included in a compulsory manner in the new curriculum of the University of Vienna, almost two

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 147 Poster sessions (Saturday)

third of all students would support more PE 2.S79 education, we developed a structured questionnaire implementation of palliative care issues throughout the with multiple choice questions, meant to get an curriculum. To further improve attitudes and skills Exploratory study of primary health care overview of facultative and mandatory education in all towards patients at end of life, palliative care education providers´ feelings of comfort with caring for kind of aspects of palliative care. should be augmented in the new curriculum. the terminally Ill patients using multiple In September- October 2008 we asked the deans of all regression and structural equation modeling medical faculties of seven European countries- Poland, Germany, Netherlands, Spain, England, Belgium and PE 2.S77 Palacios M1, Violato C2, Pereira J L3, Spice R4 France- to give the name of the persons who can 1University of Calgary, Department of Oncology, answer this questionnaire. In October we sent the The landscape of formal CME in palliative care Calgary, Canada, 2University of Calgary, Department of questionnaire to these persons. for GP´s in Flanders, Belgium Medical Sciences, Calgary, Canada, 3University of Results: Spring 2009 we will be able to deliver a picture Ottawa, Division of Palliative Care, Ottawa, Canada, of undergraduate palliative care education in these Pype P F1, Van den Eynden B1 4Palliative and Hospice Care, Okotoks, AB, Canada seven countries. All results will be available and 1University of Antwerp, Antwerpen, Belgium presented during the EAPC conference in Vienna. Aims: The main purpose of the study was to explore Conclusion: Will be available in spring 2009. Aim: Most of the palliative patients in Flanders want to the variables influencing the feeling of comfort with Keywords: Medical, undergraduate, education, be taken care of at home by their general practicioner caring for the terminally ill patients (TIPs) of a group of curriculum, student, teaching, learning, training, (GP) until the moment they die. What possibilities are primary health care providers who completed a assessment, medical schools, palliative, palliation, available for the GP to keep up the level of his palliative palliative care course in Western Canada. Secondary terminal care, end of life care. competencies to address this task? We want to describe objectives were to establish the psychometric properties a complete view of the offer of continuing medical (i.e.: reliability and validity) of the measuring education (CME) in palliative care. We describe the instruments used to assess their changes in knowledge PE 2.S81 content, the format, the organizing institutes and the and self perceived comfort levels with PC educational techniques. We want to know if the target competencies; to assess the impact this course had on Education and training for physiotherapists in population of GP´s is reached in a sufficient way and if their knowledge, and self-perceived comfort levels with palliative care. Experiences with the curriculum the impact of the educational moment is evaluated. PC; and to investigate the fit of a hypothesized model “Physiotherapy in Palliative Care” Methods: A questionnaire (based on literature and of primary healthcare providers’ feelings of comfort expert review) is send by e-mail to all institutes in with providing palliative care Simader R1 Flanders who organize CME for GP’s (local networks for Methods: Data consisted of scores on pre and post 1Austrian Physiotherapy Association, Working Group palliative care, circles of GP’s, hospitals and major GP knowledge quizzes and comfort level surveys from 300 ‘Palliative Care’, General Hospital Wels - Grieskirchen, organizations and palliative care organizations). learners who completed the LEAP course in 2005 and Academy for Physiotherapy, Wels, Austria Results: The questionnaire has been sent in october 2006. Statistical analysis involved descriptive statistics 2008 and the results are expected in november 2008. and reliability analysis of the measuring instruments; In 2007 the physiotherapists (PTs) P. Nieland, S. Mehne After statistical analysis, the results will be compared to repeated measures tests were used to compare pre vs. (Germany) and R. Simader (Austria) developed in the literature. post course results; exploratory factor analysis was cooperation with the German Association for Palliative Conclusions: Suggestions will be made to adapt the conducted to investigate the factors involved in the Care (PC) the curriculum “Physiotherapy in PC”. CME landscape following EAPC curriculum feeling of comfort with caring for the TIPs experienced Since 2008 this curriculum is basis of a 40 lesson suggestions. by primary health care practitioners, and aided in the education for graduated PTs in Germany and Austria. process of establishing construct validity of the These one week trainings are given by experienced instrument; multiple regression analysis was conducted members of all important professional groups in PC PE 2.S78 to investigate the proportion of variability in the such as physicians, PTs, psychologists, councillors, dependent variable (post-course comfort level with social workers, pastors, philosophers and volunteer PC A descriptive survey to assess the palliative care caring for the TIPs) explained by the dependent staff. knowledge of generalist public health nurses in variables chosen for the model (pre-course knowledge; The main objectives of these courses are to improve the mid west region of Ireland post-course knowledge; discipline; perceived change in knowledge in diagnosis and medical treatment comfort levels due to the course; and pre-comfort levels strategies, communication skills and bio-psychological Smyth H R1 with caring for the TIPs); the result of this analysis was background, to deal with ethical and spiritual aspects in 1Milford Care Centre, Palliative Homecare, Limerick, used to construct a theoretical model to explain PC and of course to improve planning the Ireland variance in the feeling of comfort with caring for the physiotherapy process on terminally ill patients on TIPs. Structural equation modeling was used to test the evidence based level. As the focus of care of the dying has shifted from proposed model. Since 2008 seven trainings were held and about 120 PTs hospital to home, the quality of terminal care in the Results: Study results will be presented during the participated in this program. Furthermore 6 courses are home and the possibility of a home death depend to a conference. planned for the year 2009. It is obvious that there is a great extent on the care provided by generic big PTs´ need to be trained in PC because PC is still community health professionals. The significance of rarely taught in under- or postgraduate PT education. improving the skills and supporting the primary care PE 2.S80 But also in this belonging the curriculum made PT team in order to facilitate patient preferences to die at education facilities more open minded on this topic. home is clear. What do medical students learn about palliative All courses were evaluated and currently we discuss the This study aimed to examine the palliative care care? 1st year and possible adjustments. The results are knowledge base of generic community nurses (Public presented at this congress. Health Nurses) in one region (the mid west) in the Woitha K1, Engels Y1, Fokke J1, Jaspers B2, Menten J3, Noble Beside of the obvious result of the courses for PTs - Republic of Ireland. The information gained from this B4, Leppert W5, Mollard J-M6, Vissers K C P1 being the improved abilities to work with PC patients descriptive research could then be used to plan future 1Radboud University Nijmegen Medical Centre, and in PC teams - we see vast improvements in the educational programmes for these nurses. Upon ethical Department of Anesthesiology, Pain and Palliative communication and exchange of knowledge between approval, the existing questionnaire (Ross et al, 1996) Medicine, Nijmegen, Netherlands, 2University of Bonn, the different professional groups. So improvements are was adapted, validated and piloted for use in the Irish Malteser Hospital Bonn/Rhein-Sieg, Dept. Science and on both sides: PT and PC System. setting. It was administered by post to the population of Research in Palliative Medicine, Bonn, Germany, The Curriculum was already topic at the Europ. PHNs in the area, and achieved a fifty-five per cent 3University Leuven, Radiotherapy-Oncology, Congress on PT Education in Stockholm and the response rate. Coordination Palliative Care, Leuven, Belgium, ANTEA Worldwide PC Conference in Rome and there Results indicate that the sample have a fair level of 4University of Sheffield, School of Medicine and had been requests of other countries to get more knowledge of palliative care, slightly lower than in Biomedical Sciences University of Sheffield, Academic information and even translated editions. We are sure other countries. The mean score on the questionnaire Unit of Supportive Care, Sheffield, United Kingdom, that the curriculum has been a positive step for both was 12.6 out of 20. Akin to previous research 5Poznan University of Medical Sciences, Department of PTs and the PC System. worldwide, this study reveals respondents’ deficits in Palliative Medicine, Poznan, Poland, 6Ensemble Soigner knowledge are in relation to pain and symptom control. et Acompagner a Paris, Paris, France Participants demonstrated a good knowledge of PE 2.S82 philosophical, psychosocial and spiritual issues. Aim: All doctors should be able to provide basis Recommendations from this research include more palliative care. This implies that education in palliative Japan Partners Against Pain® (JPAP®) activities specific assessment and planning of education for this care should be teached in the undergraduate medical and effects on pain management awareness in group of nurses by the Specialist Palliative Care Service. curriculum. It is unclear whether medical schools in the medical community The tool could serve as an important assessment tool Europe have a structured programme for such for not only for a variety of nurses in Ireland but could education, whether this is mandatory or facultative and Meguro N1, Noguchi T2, Namiki A3, Mashimo T4, be further validated for use with other professionals. what aspects are covered. Therefore, as part of a EU- Shimoyama N5, Ogawa S6, Hanaoka K7 1

sessions References: ROSS, M.M., MC DONALD, B., MC funded study ‘Best practices in palliative care in Osaka Medical Center for Cancer and Cardiovascular GUINNESS, J. (1996) The palliative care quiz for nursing Europe’, we wanted to answer the question: Diseases, Osaka, Japan, 2Faculty of Medicine, Oita (PCQN): the development of an instrument to measure What is the status quo of undergraduate palliative care University, Yufu, Japan, 3Sapporo Medical University, 4

(Saturday) nurses’ knowledge of palliative care. Journal of education in seven European countries (England, Sapporo, Japan, Osaka University Medical School, Advanced Nursing. 23, pp.126-137. Poland, Germany, Spain, Netherlands, Belgium, Osaka, Japan, 5National Cancer Center Hospital, Tokyo, Poster France)? Japan, 6Nihon University, School of Medicine, Tokyo, Method: Japan, 7JR Tokyo General Hospital, Tokyo, Japan Design: Structured survey. Population: Persons whom the deans considered most Aims: The misperception that narcotics for medical use capable to answer question about undergraduate should be prescribed only for patients with end-stage education in palliative care. cancer is common among many medical professionals Setting: All medical faculties in seven European and patients in Japan. Patients and even physicians countries. have strong concerns about the medical use of opioids Procedure: Based on a literature search and expert because of addiction or other problems associated with interviews with persons from different European these drugs. Pain treatment in Japan lags behind the countries as well as the European taskforce of West because of a lack of knowledge and/or experience

148 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) in pain treatment among medical professionals and of patients with cancer. Implementation of this care is PE 2.S86 patients. While the Japanese government has just focused on that health professionals have the necessary begun taking aggressive measures to improve cancer communication skills and understanding of the Government and NGOs cooperation to improve treatment including enacting the Cancer Control Act in emotional state of the patients and their families. of palliative care specialists’ education and 2007, it is still a struggle to deliver proper treatment due In order to address these issues, a number of workshops training in Ukraine to a lack of knowledge and education on pain were implemented targeting specific groups of management. professionals. The professionals included doctors from Tsarenko A1, Gubskiy Y2, Tchaykovska V3, Stadnyuk L4, To address these issues, medical professionals the pathology and surgical wards of a public hospital, Serdiuk V5, Martynyuk-Gres’ S6 specializing in pain treatment established Japan nurses from all the departments of two public hospitals 1Ministry of Health of Ukraine Institute for Palliative Partners Against Pain® (JPAP®) in 2003. and social workers from the government social welfare and Hospice Medicine, and All-Ukrainian Association Methods: JPAP® is a nonprofit organization devoted to office. The workshops included: for Palliative Care Training Centre, Kyiv, Ukraine, spreading awareness of pain management and (a) the use of video with professional actors, 2Ministry of Health of Ukraine Institute for Palliative appropriate pain medication based on our belief that (b) verbatim scenarios from cancer patients, and Hospice Medicine, and All-Ukrainian Council for “pain should not be tolerated.” (c) role playing scenarios in order to reconstruct the Patients Rights and Safety, Kyiv, Ukraine, 3Ministry of Results: As of August 2008, the number of JPAP® dialog between the health professional/patient/family. Health of Ukraine, and Academy of Medical Sciences of medical professional members has surpassed 2,300, Since for many professionals this was their first time Ukraine Institute of Gerontology Head of the Social almost half of whom are doctors. exposed to the subject, the framework of the workshops Gerontology Laboratory, Kyiv, Ukraine, 4Ministry of Major activities of JPAP® include the distribution of concentrated on the most common and basic Health of Ukraine National Postgraduate Medical accurate information on pain management to medical communication needed by the professionals for Academy Geriatric Training Centre, Kyiv, Ukraine, 5All- professionals and the general public. These include effective communication. These included four areas: Ukrainian Council for Patients Rights and Safety, Kyiv, lecture meetings, case conferences, dispatch of (a) Barriers in communication between health Ukraine, 6All-Ukrainian Association for Palliative Care, instructors, and events for media & the general public. professionals and patients with cancer, Kyiv, Ukraine In 2008, JPAP® produced a short documentary featuring (b) I do not know what to say, handling difficult two JPAP® physicians proactively engaged in palliative questions with cancer patients, Aim: The problem of education and training of care to shed light on the issues shared with those (c) Anger management in cancer, medical students, doctors, nurses, volunteers, patients´ involved with palliative care. (d) Breaking bad news. family members for Ukrainian Palliative Care (PC) Conclusion: JPAP® has been influential in spreading The results of how each professional group responded Service is crucial. The first Hospices and PC the message of appropriate pain management to a wide to the training are discussed extensively. However Departments in hospitals were founded in 1997 - 1998. range of medical professionals and the general public. common findings for all groups are that health However, there is not developed a system of PC We hope to continue our efforts to raise the level of professionals were exposed to little or no training in specialists training untill. This is one of the reasons of care and ensure that no Japanese cancer patient has to their professional training and that the workshops have insufficient access of patients to PC. The objectives of suffer from pain. helped them to deal with situations that have being our surveillance were to study the situation concerning JPAP® is funded by a grant from Mundipharma K.K. avoiding so far from feelings of inadequacy. of PC specialists’ training and develop propositions for The findings from the training indicate an urgent need Ministry of Health (MOH) and Ministry of Social Policy to develop a more permanent framework for providing and Labor of Ukraine (MSPLU) to improve it. PE 2.S83 health professionals with both skill development and Methods: Different methods we used: interviewing ongoing support in order to integrate psychosocial with regional Health Care Authorities using a A project of transfering expertise from a hospice aspects of care and optimize patient care. questionnaire approved by MOH; and site-visiting of in a hospital setting to local nursing homes - selected Regions using interviewing of doctors, nurses, Experiences social workers, patients, NGO representatives etc (345 PE 2.S85 persons). Additionally we analyzed statistic data, Reinvold T K1, Blaafladt A1, Normann A P1, Lindahl R V1 evaluated Medical Universities and Colleges 1Lovisenberg Diaconal Hospital, Hospice Lovisenberg, An educative journey leading to better support Curriculums, made an assessment of estimated needs Oslo, Norway for adults with intellectual disability who have Ukrainian Public PC Service (UPPCS) in specialists developed an advanced or progressive, life- according of the International approaches. Aim: To transfer expertise in palliative care from limiting illness Results: 85% of regional health authorities unsatisfied Hospice Lovisenberg to local nursing homes. Hospice with the current Public PC legislation; 75% - support Lovisenberg is a specialized palliative unit at the Midgley C J1, Sutherland J2 the development of PC Facilities. Estimated 245 medical department in a diaconal hospital in Oslo, 1Saint Francis Hospice, Palliative Medicine, Romford, doctors, 4500 nurses and nurses’ assistants for hospices, Norway. United Kingdom, 2Saint Francis Hospice, Palliative Care, and 1400 doctors and 5500 nurses for multidisciplinary Methods: Two experienced palliative nurses and one Romford, United Kingdom home PC teams should be trained in Ukraine. palliative doctor part time were employed in the Conclusion: To improve of PC specialists’ training project. The project period was two years. The funding There is wide recognition that people with intellectual UAPC in collaboration with MOH Institute for Palliative was from the health authorities. disability (ID) may miss out on helpful palliative care and Hospice Medicine, Institute of Gerontology and Three local nursing homes were chosen in three services in the face of advanced or progressive life- National Postgraduate Medical Academy developed the different town districts in Oslo. In each nursing home limiting illness. Our care of a person with ID PC Training Curriculum for health providers and one short-term ward was selected to participat. highlighted our gap in knowledge of ID and the medical students. About 250 health providers were All employees in these wards filled out a questioner additional difficulties arising for patient, for family and trained. In 2008 we are developing of the National PC about their own view of their own competence in for carers-including our own staff. We set out to explore Developing Program till 2014. The important part of different palliative fields. local ID support networks and meet key workers in the the Program is PC specialists, volunteers and patients’ The project nurses made all day visits to the short-term field to improve our understanding and work together family members training with NGOs and wards to get to know the staff and learn about how the towards a supportive pathway to care, using the UK Governmental institutions collaboration. nursing homes managed their patient. For us it was Help the Hospices ‘Widening Access’ model. important to also focus on what the Hospice could Initial meetings identified a huge gap in our learn from the nursing homes. understanding of support services and supportive PE 2.S87 Each nursing home ward sent nurses and helping material for people with ID, but also a huge gap in their nurses to the Hospice for one weak each. The expenses understanding of health, social and specialist palliative Results of dental screening during for this were paid for by the project. All nursing homes care services available to support through difficult bisphosphonate therapy had several different teaching courses in palliative care. times. The project nurses visited the nursing home regularly Working together has led to revision of our ‘referral in Papke J H1, Papke S2, Berger S1, Schuetze A3 each week and offered assistance and guidance. The for palliative care services’ form, creation of a ‘fast track’ 1Praxis for Oncology and Palliative Medicine, Neustadt, nursing homes could also contact the nurses whenever pathway towards early face to face contact with the Germany, 2Praxis for Dentistry, Neustadt, Germany, needed by phone. client and their key worker, real engagement with that 3Apotheke Dresden-Johannstadt, Dresden, Germany Local resource groups were created in each nursing key worker, and with key family, and increased home and the project nurses continued to follow up confidence for us all in managing advanced illness With increasing of bisphosphonate therapies reports the nursing homes and the local resource groups at together. We now use literature introducing palliative about bisphosphonate induced osteonecrosis of the jaw regular intervals and whenever needed throughout the care to adults with ID. We now understand patient held are growing. Prophylaxis of this complication is project period. records widely used in support of people with ID, but important. Since 2005 all patients with bisphosphonate Results: In evaluating the project it was viewed as a largely unrecognised outside of that field, with their therapy got a clinical and radiological success for all participating institutions, both by the useful health summary and information on an (orthopantomography) dental screening. leaders and by the staff. individual’s understanding and ways of expressing. We investigated 32 patients (5 male, 27 female), middle Conclusion: The main criteria for the success were There is firm recognition now that most adults with ID age was 69,5 years. All patients got an intravenous that the expenses was paid for by the project, making prefer to stay at home when dying. Extra hands on care bisphosphoante therapy with zoledronat, middle over

the staff in the nursing homes feel ownership to the at this time is now on the Commissioning agenda. We 16,3 months. Main diagnoses were metastatic breast sessions project, the regularly guidance done by the project have developed and run a day conference on carcinoma (16), multiple myeloma (9), lung carcinoma nurses and devoted leaders. ‘Intellectual Disability: ensuring excellence and (4) and renal cell carcinoma (3).

empowerment in end of life care’, to which individuals 17 patients (53%) hat no dental foci. 11 patients (34%) (Saturday) with ID, and people bereaved of a loved one with ID had foci; 4 patients (12%) had osteonecroses before PE 2.S84 contributed. The work, and conference have really therapy. During therapy 2 patients developed Poster improved local supportive relationships and identified osteonecroses; both had foci before. Teaching professionals on how to support service development needs. Conclusion: 34% of asymptomatic patients hat foci patients and families with cancer with need of dental therapy. It seems that these foce have predictive value for later osteonecroses of the jaw, Tryphonos A S1 so that dental surgeons should be integrated in therapy 1The Cyprus Association of Cancer Patients and Friends, of patients with parenteral bisphosphonates. Larnaca, Cyprus

There is sound evidence to support the notion that the provision of psychosocial care improves the outcomes

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 149 Poster sessions (Saturday)

PE 2.S88 Evaluation included questions on the training, nurse resources, 27 clinical placements and 440 GPs have fears and confidence levels. Pre-training fears were participated in palliative care-related conference Learning by doing: Integration of a research around role, knowledge, skills and training. activities across Queensland. project on communication into a master´s ‘Not confident’ reduced from (9)37% to (1)4%. ‘Fairly Conclusions: Respondents reported the initiative was degree program confident’ increased from (12)50% to (15)63%. effective in providing educational activities for GPs ‘Confident’ increased from (3)13% to (8)33%. across Queensland. Limitations noted included Schuler U S1, Schubert B2, Participants of the First DIU Re-assessment continues as the service is used. inefficient application and review processes and Palliative Care Program Conclusions: Experiential training with guideline inadequate funding to achieve sustainable outcomes. 1University Hospital Carl Gustav Carus, Department of support increases staff confidence in taking part in a Recommendations for improvement include building Medicine I and Palliative Care Unit, Dresden, Germany, new telephone advice service. in options for updating previously created resources, 2Palliative Care Unit, St-Jospeh-Stift, Dresden, Germany limit funding to mentoring projects (as this duplicated other initiatives currently available to GPs), and Aim: In December 2007 Dresden International PE 2.S90 refining the application and evaluation processes. University (DIU) started a master’s degree program for *Divisions are currently being contacted individually Palliative Care. In the development of the curriculum Which competencies do care givers need for by phone in an attempt to improve the response rate. an attempt was made to integrate acquisition of providing spiritual care? practical knowledge, perception of published primary research, discussion of research methodology and Kuin A1, Wulp M1 PE 2.S92 performing independent research. 1Agora, National Support Centre for Palliative Care, Methods: In the field of communication the Bunnik, Netherlands Certified palliative care courses for nurses, participating post-graduate students received a problem course leader qualification and activity in based task of developing a small conjoint research In the Netherlands there are several initiatives aimed at Germany - Analysis of nation-wide data from project based on the interview of a group of patients at the structural embedding of spiritual care in end of life 1998 - 2008 their respective institutions. Participants analysed care. In 2008 a directive Palliative spiritual care was published studies based on interviews and/or presented and the Expert Network on Existential Issues Schumacher E1, Kern M1, Mueller M2, Aurnhammer K3 questionnaires (among others Hagerty et al. (2005) JCO and Older People was founded. Approximately 20 out 1Malteser Hospital Bonn/Rhein-Sieg, Centre for 23:1278, Kleeberg et al. (2005) SCC 13:303, Schofield et of the 74 Networks of Palliative Care, responsible for Palliative Care, Academy for Palliative Care, Bonn, al. (2003) Ann Onc 14: 48), used them and additional the development of palliative care, pay explicit Germany, 2ALPHA Rhineland, Bonn, Germany, input from the group to generate a structured interview attention on the improvement of spiritual care. Both by 3Palliative Care Unit, Voelklingen, Germany on aspects of primary disclosure of diagnosis. developing education programs on spiritual care, as Results: An 19-item (most of them subdivided) well as establishing support teams where patients and Background: In Germany, there are curricula (CU) for questionnaire was generated. Some items interviewed care givers can request for a spiritual care professional at further/continuing education in palliative care (PC) for the patient about his own communication experience home. nurses (N), 160 hrs (1996); psycho-social professionals (patient as “witness”), others asked for preferences and Aims: Further development of the education on (PSP) 120 hrs (2002) (both leading to laws on advice for doctors (patient as “expert”). Respective spiritual care, by education programs as well as qualification requirements in in- and outpatient PC; merits of different types of questions were discussed structural embedding in the basic training of care physicians (160 h, 2004) and physiotherapists (40 hrs (open, structured, Likert-Type etc.). With the help of providers, is urgent as is agreed by the members of the 2006). All CU cover aspects of cancer pain therapy, tutors a protocol was written and discussed with an IRB. National Platform Palliative Care; a group of symptom control, communication, ethical and legal In the practical phase, students interviewed 152 Patients representatives of a large number of important matters, dealing with death and dying, bereavement, at their respective institutions. In further seminars organizations for palliative care in the Netherlands, and others. Since 1998, course leader (CL) training is generation of a study-database and statistical analysis of including the Ministry of Health, Welfare and Sport. available. Only courses based on these CU by Kern, the data was subject of further teaching. This is also For the further development of a coherent offer of Mueller, Aurnhammer are certified by the Deutsche intended as preparation for individual research towards education programs on the long term, it is important to Gesellschaft fuer Palliativmedizin (DGP) and Deutscher a master thesis of the participants. agree which competencies both informal and Hospiz- und PalliativVerband (DHPV). The Academy for Conclusion: Within the context of a master degree professional care givers need to provide adequate PC in Bonn is the authorised agency for the program it is possible to integrate a group working at spiritual care. certification of courses according to these CU, and for different sites into the conjoint work on a small Methods: In this study it is investigated which documentation and evaluation. This is the first study research project and generate experience on the subject competencies in knowledge, skills and attitude are that analyses the nation-wide development of courses and methodology and meaningful data at the same needed, concerning the recognition of spiritual needs, for N and CL activities in the past decade. time. the provision of adequate support, and proper reference Method: Descriptive analysis of national database with and co-operation with spiritual care professionals. For SPSS for Windows V. 16.0. this purpose literature, teachers and key persons on Results: Starting with the first CL course in 1998 with PE 2.S89 spiritual care, and representatives of the National 9 participants (P), until 2003 49 and as of 2008, a total Platform Palliative Care will be questioned on the number of 103 CL were certified; 77 (75%) are still Development of telephone advice training for competencies they think are important. In expert active. The number of courses for N increased from 1 hospice in-patient nursing staff meetings the minimum set of competencies will be (1998) to 35 (2003) and 131 (2008); total no. over the discussed for the different disciplines involved in 10-year period 532, with a total number of 9576 P. A Wells S L1, Murray J2 palliative care. check of postcodes of the institutions offering certified 1Marie Curie Hospice Solihull, Palliative Care, Solihull, Results: At the EAPC conference the results of this courses for N showed uneven distribution across United Kingdom, 2Marie Curie Hospice, Solihull, investigation will be presented. Germany. More detailed results will be presented. Solihull, United Kingdom Conclusions: The increasing numbers of courses and P reflects the rapid development of PC in Germany. Background: NICE guidance for supportive and PE 2.S91 Against the background that PC is only marginally palliative care for adults with cancer recommended incorporated in N education, the fact that about 10,000 generalist access to specialist palliative care advice, General practice palliative care education N were trained in PC shows a high interest of this 24/7.The Marie Curie ‘Making the most of our Hospices initiative: Program review profession in PC. The number of courses for N should ‘project demonstrated patient and carer need for be increased, a more even distribution across Germany consistent, accurate advice around the clock. Education Trevena T L1, Yates P M2 is needed. Qualitative research to explore the outcome needs assessment of 15 senior nurses demonstrated a 1Queensland Health, Centre for Palliative Care Research of PC courses is needed. lack of confidence and training requirement to provide & Education, Herston, Australia, 2Queensland Health, telephone advice. Centre for Palliative Care Research & Education, Aims: The project aimed to develop a training Herston and, Queensland University of Technology, PE 2.S93 programme for in-patient nursing staff to provide Kelvin Grove, Australia telephone advice. Nursing education in palliative care - Challenges This would: Aims: From 2002 Queensland Health has allocated and opportunities • explore the rationale for giving telephone advice annual funding for the development of palliative care • assess advice given education and skill enhancement for General Mitrea N1 • explore participants feelings about giving telephone Practitioners (GPs) throughout Queensland, in three 1Hospice Casa Sperantei, Brasov, Romania advice. individual funding categories (mentoring & leadership, The benefits of this training would be consistent, resource development, and conference or workshop In 1997, as a result of the high need for Palliative Care accurate and auditable 24 hour telephone advice. activities). Funds are provided to individual GP in Romania and great request for education and Methods: There was no published evidence on Divisions who are responsible for developing and training in this area at national level, Hospice “Casa training for the provision of telephone advice. The delivering the activity. This review aimed to evaluate Sperantei” - the first Romanian hospice - opened

sessions “Pan-Birmingham advanced communication skills the outcomes from the program to date, and provide “Princess Diana Study Centre for Palliative Medicine”. course” and “The Samaritans - volunteer phone recommendations for ongoing development of the The achievements of Hospice “Casa Sperantei” are training” models were utilised in planning the training. program. confirmed in the study “Transitions in end of life care”

(Saturday) Results: We developed a one day interactive course Methods: The review involved analysis of final reports by David Clark and Michael Wright (2003) where the including: submitted by email and phone survey of the 18 GP authors recommend: “Brasov could further develop its Poster • Experiential group work with feedback and divisions within Queensland. Survey topics included regional role in the Balkans, supporting Albania, discussion system processes, and self reported outcomes including Bosnia-Herzegovina, Bulgaria, Romania, Macedonia, • Telephone Triage role play with individual feedback sustainability of outcomes. Moldova and Serbia”. Many resources - time, people, and evaluation Results: Since 2002, of the 46 applications received, 37 finances - have been dedicated to our new mission: “to • Group discussion. were funded. Total funding awarded for the GP consolidate Palliative Care education, through both 23 Staff Nurses and 1 Ward Manager took part. Education Initiative since 2002 is $324,095. 13 (or 72%) practical and theoretical courses, for medical and allied It was delivered by the lead communication skills of the 18 GP Divisions across Queensland accounted for health professionals throughout Romania and Balkan training nurse and a doctor. An iterative, colour coded 34 of the 37 funded applications. Eleven (or 61%) of region”. The results consist in 163 nurses and doctors telephone advice flowchart was developed that the 18 GP Divisions have provided comment as part of educated and trained in Palliative Care from 11 provided signposting to locally accepted network the evaluation process^. Positive outcomes of the countries: Albania, Bosnia-Herzegovina, Bulgaria, guidelines. initiative have included the development of eight new Greece, Macedonia, Moldova, Russia, Serbia, Tajikistan,

150 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

Ukraine, Uzbekistan. Up until now we faced many receiving the information package, or viewing the Tool: 2 days’ meeting/12 volunteers from 4 different challenges - cultural particularities, limited resources, website. Of note, after 3 months of active treatment, institutions+2 moderators+2 observators+1 manager different educational back rounds - but at the same 52% of patients indicated that they had not been given HCV. time we encountered unique opportunities - adapting information about clinical trials by their physicians or Results: Elaboration of a catalogue including 8 our knowledge and skills to lack of resources, learning nurses. 87% of patients indicated they were not domains of competencies subdivised in 122 tasks. to keep our mind opened to new experiences, develop participating in research at the time of response. Objective step 2: To design a palliative care training ourselves as medical professionals. At the moment we Conclusions: When considering resource allocation, program based on identified competencies (domains provide Nursing Education in Palliative Care in the development of quality educational interventions may and tasks). Region - at different levels: basic education for nurses, be beneficial; however, we propose that information Tool: 5 persons working group representing the actual continuing medical education, post-graduated courses - relating to research should be delivered from primary courses and HCV. depending on the needs and requests. The challenges health care providers directly to patients. Results: To build and set up a palliative care training we face and the opportunities we encounter make the Funding: Alberta Cancer Board. program on both pedagogical (contents of the basic theme of this presentation. and continuous training, teaching and learning methods, etc.) and administrative (duration, frequency, PE 2.S96 application, link with specialized palliative care PE 2.S94 settings, etc) levels. Undergraduate education in palliative care (PC). Conclusion: The future palliative care training Contribution of palliative care toward First 3 years of experience program for volunteers has been designed on the base developing nursing as an autonomous profession of the clinical practice of the volunteers themselves, in Romania Sala R A1, Zanini K1, Juarez S D1, Rapelli C1, Fein L E1 which guarantees a true coherent education concept 1Eva Peron School Hospital, Palliative Care, Rosario, linked to reality. Volunteers are essential partners Mitrea N1 Argentina within PCV. It is therefore crucial that they benefit 1Hospice Casa Sperantei, Brasov, Romania from a basic common training, independantly from the Traditionally medical students have received little setting where they practice and the age of the patients Developing a new profile of a profession like nursing education in PC usually without adequate preparation they accompany. The training will allow them to has to go through several steps: individuals to become for interdisciplinary team work. acquire knowledge and competencies in the palliative aware of their own role and contribution in the care of Since 2005 an elective, 80 hours subject, on PC is care domain and specifically in the field of patients, models to be established, replication and dictated. Main topics include: definitions, interdisciplinary teamwork. dissemination of models, joining voices into one interdisciplinary team work, decision making, professional organization. All this takes place in a given communication, treatment of pain and other context that can facilitate or hinder the process. For the symptoms, ethics. Teaching is case based in large PE 2.S98 last 20 years, since the Revolution against communism groups with elective rotations to an acute care hospital in December 1989, Romania has changed progressively, PC team. A quality frame for nurse education in palliative including the medical system. The inherited centralized Since the first year voluntary and anonymous initial care in the Netherlands system of organizing health care assumed hierarchically and end of course surveys were administered to all the subordination of a profession to another - ex. nurses to students that choose this subject (total: 308 students). Woldberg H1, Brinkman A1, Prikker E1, De Wit A1, Vogelaar doctors. The intended pattern since 2002, when Aim: P1, Guldemond A1 Nursing Universities have been established and the a) of the initial survey: to evaluate the reason of 1V&VN Dutch Nurses Association, Palliative Nursing National Order of Registered Nurses has declared their choosing this subject and the grade of knowledge about Education Committee, Breda, Netherlands position toward developing nursing as an autonomous the objectives of PC, profession, is to implement progressively new clinical, b) of the final survey: the change in the grade of Aim: A committee of the Dutch Nurses Association for educational and managerial responsibilities for nurses. knowledge about the objectives of PC and the grade in Palliatieve Nursing (V&VN PV) has developed a quality Palliative Care nurses from Hospice “Casa Sperantei”, which the course will impact in the future practice of frame in which competences for different levels of already perceived as an island of autonomous this students as doctors. palliative care nursing are described. Reason for this was professionals working interdependently with other Results: Average age: 23 years. Sex: 72.8% females. a big need for such criteria, e.g. in educational members of the multidisciplinary team, became aware Initial survey (278 out of 308. Response rate: 90%, institutions. Its purpose is to evaluate and audit existing of the opportunity they have to influence the image of considered excellent): nursing educational programs (curricula) and to offer a their profession through the power of own example. 70.9% chose the subject for interest, 23.9% for curiosity description of competences on different levels when Being a matter of changing attitudes, prejudice and out and 4.3% for obligation. new educational programs and extra training are of date conceptions it takes patience, time and 92.7% could identify objectives of PC regarding patient developed. perseverance. The purpose of this presentation is to care correctly, but only 56.7% identified objectives Methods: The committee developed the quality frame analyze the contribution of Palliative Care toward the regarding family members care. based on three documents; “A guide to the development of nursing as an autonomous profession Final survey (224 out of 282. Response rate: 79%, Development of Nurse Education in Europe “ (EAPC in Romania and to bring hope and encouragement to considered very good). 2004), the Professional Profile of Nurses working in nurses from ex-communist countries that face the same 95% could identify objectives of PC regarding patient Palliative Care (V&VN PV) and the Professional Nursing situation. Change is possible and it happens with the care correctly and 83.5% could now identify the Educational Act (VBOC 2004). help of open minded people. objectives regarding family members care (p = Results: Following the European Guideline, three <0.00001). course levels are differentiated; basic (A), advanced (B), For 87.1% students this course will positively impact in and specialized (C). In the quality frame the committee PE 2.S95 their future practice, for 89.3% the contents were useful has added an extra level (B+) to subdivide the large and for 83% the course positively changed their vision group of advanced nurses. Level B+ involves nurses Patient awareness and knowledge of clinical of interdisciplinary teamwork. with qualifications surpassing their own department trials: Do research specific educational Of the 190 students (61.6%) that carried out the and nurses working as a consultant. Level C involves interventions increase patient enrollment? rotations (77.1% qualified them as very good or good nurses that can do scientific research and can (37.2% and 39.91% respectively). participate (pro-)actively in providing education and Stiles C1, Johnson L2, Helland-Nergaard T2, Whyte D3, Conclusions: Although basic concepts of PC were training. Gardner J2 already known, this course helped to complete and The different levels and some competences will be 1Alberta Cancer Board and University of Calgary, better integrate previous knowledge. presented schematically. Meanwhile, the Dutch Calgary, Canada, 2Tom Baker Cancer Center, Clinical government has provided a grant, to facilitate printing Trials, Calgary, Canada, 3Tom Baker Cancer Center, and distribution of this quality frame. Calgary, Canada PE 2.S97 Conclusion: A quality frame has been developed, describing four levels of competences in palliative Background: There is ample research that Palliative education for volunteers: Towards nursing care, based on national and international characterizes the barriers to patient participation in harmonization of competencies guidelines. Education programs can use the frame to clinical trials. Reports cite only 2-4% of cancer patients develope curricula and to make sure that the quality of participate in research. In addition, up to 85% of Porchet F1, Burki C2, Depallens Y3, Noble Burnand A2, these programs are guaranteed. patients indicated they had no knowledge that clinical Hoenger C4, Palliative Education for Volunteers Vaud research was being undertaken in the facility in which 1Centre Hospitalier Universitaire Vaudois, Service de la they were being treated, or that they may have been Formation Continue Direction des Soins, Lausanne, PE 2.S99 eligible for a study. We hypothesized that a variety of Switzerland, 2Caritas Vaud, Lausanne, Switzerland, research specific educational interventions could 3Fondation Rive-Neuve, Villeneuve, Switzerland, Getting into pedagogy: Action research in the measurably increase enrollment. 4Programme Cantonal de Soins Palliatifs, Service de la Macmillan Specialist Palliative Care Team, North Methods: All new patients received an invitation to an Santé Publique Vaud, Lausanne, Switzerland Wales NHS Trust (East)

orientation session at which patient research was sessions highlighted. Patients were mailed a survey which Context: Until 2007 about 180 volunteers representing Richards T1, Poolman M1, Foster A1 captured understanding of clinical trials and exposure 7 different institutions used to work with severely ill 1North Wales NHS Trust (East), Macmillan Specialist

to research information. In two weeks, an information and dying patients in healthcare and living settings Palliative Care Team, Wrexham, United Kingdom (Saturday) pamphlet with website address was mailed to the (elderly homes, academic and regional hospitals, home, patient. The pamphlet and website offered general institutions for mentally disabled people). These Utilising an action research model, we report on an Poster information, frequently asked questions, and provided volunteers had followed disparate trainings with education project, focusing on the local team delivering links to additional information. A post test was sent to various durations, some even had no training at all. specialist palliative care teaching. Team motto: initial responders at three months. Goal: To create a unique palliative care training ‘Optimising learning to optimise patient care’. Results: During the time of testing, patient program for volunteers included in the context of Background: Education is an important priority for enrollments decreased. There were several confounders Palliative Care Vaud (PCV), elaborated, structured and all Specialist Palliative Care Teams. It aims to empower that may have influenced this trend. Over 4 months, set up by Health Care Vaud (HCV). other healthcare professionals to deliver high quality 903 Survey 1 were mailed, with a 45% response rate. A Objective step 1: To identify the required care to all patients in the palliative phase of any illness. response rate of 55% was achieved for Survey 2. There competencies for volunteering in the palliative care Education programmes should be planned, delivered was no statistical significance between entry into a field through the DACUM method (Developing A and assessed against the highest pedagogical standards clinical trial and; orientation session attendance, CurriculUM). in Higher Education.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 151 Poster sessions (Saturday)

Three elements are important: Over several years, I collected sentences, phrases and semesters. 10 units were devoted to communication - The educator should ideally be a practising clinician chapters from fiction (German: “Belletristik”) which are teaching including a longitudinal 1:1 real patient - The educator should be suitably qualified in related to palliative care. contact module of four months. The intervention was pedagogical principles During my lecture I talk about the books I have read, controlled by 3rd year medical students (n=22). - It is imperative to cultivate a culture of continuous presenting these quotations with the thoughts and Asessment was facilitated by an 86 items online professional and team development. insights of authors, novelists and poets. Mixed in, there questionnaire in a pre/post/retrospective-pre design Methods: “Action research is a reflective process of are also funny, juicier parts and creative ways of using the Thanaphobia Scale Assessment, Collett-Lester progressive problem solving led by individuals working thinking. Educating happens by using the quotations Fear of Death and Dying Scale and a Harvard palliative as part of a “community of practice” to improve the and making connections to important aspects of program questionnaire. Instruments were translated way issues are addressed.” It acts as a vehicle for change attitude, skills and knowlegde of palliative care. into German, adapted and re-validated by a delphi rather than simply a means of investigation. The basic Results: During the last years, I have had the process and pretesting (Internal consistency 0,83-0,91). structure is a cycle of: plan, act, observe, reflect. One opportunity to hold these lectures many times. In the Retrieved data was statistically analysed with SPSS.16. 5- cycle builds on the other resulting in a continuous, process, I continue to include my findings from new point-Likert scales were dichotomised and correlative dynamic spiral of service improvement. books in the lecture so it remains fresh and palatable - analysis was performed using the 2-sided exact test for Aims: not the least for me in my preparations. 2x2 tables for small samples (p-value < 0,05 considered - To review the current teaching portfolio of the team Conclusion: The lecture “Literary Fruits along the significant). - To scrutinise individual and team practice Palliative Way” has been held in numerous places in Results: 84% of all students (n=31) did have contact - To implement steps building on current good practice. Austria in various contexts of educational speaking and with dying patients and 76% had experienced the death Interventions (‘Act’ as per cycle) include regular update lecturing. From the affirmative response, it seems that of a family member or friend prior to the intervention. sessions on salient pedagogical principles, the people are very interested in this type of presentation Significant changes were found in the feeling of introduction of individual teaching folders to aid and find it appealing. It fascinates me how the things preparedness to care for dying patients (p=0,007), to professional development by regular use of structured we love ourselves can hold such potential to please break bad news (p=0,005), to handle emotions in reflective practice logs, and centralising teaching other people in similar ways. patient contact (p=0,001) and to speak about advanced requests. directives (p<0,001). No change in attitude towards Following this, formal review of the enhanced teaching death and dying was found during the intervention. portfolio and individual folders will aid decision- PE 2.S102 Conclusion: There is a need for systematic teaching in making on future design of single sessions, and inform communication with dying patient for undergraduates curriculum design of programmes of study. The International multidisciplinary course: as they have relevant contacts with dying patients structured approach locally will support the integration Suffering in orthodox perspective during their studies and feel a need for training while and coordination of Palliative Care education delivery effective concepts are available. across a wider arena. Mosoiu N1, Hinshaw D2, Mosoiu D3 1University Lucian Blaga, Orthodox Theological Faculty, Sibiu, Romania, 2University of Michigan, Palliative Care PE 2.S104 PE 2.S100 Department, Michigan, United States, 3Hospice Casa Sperantei, Brasov, Romania Interprofessional communication taught to Baby doctors in palliative medicine - Helping German nursing and medical undergraduates in arrivals deal with departures Palliative care aims at relieving suffering through a seminar on palliative care needs of the elderly impeccable assessment and treatment of pain and other Poolman M1, Speyer F2, Makin M1 symptoms, psycho-social and spiritual care. Spiritual Just J1, Schulz C1, Haynert H1, Katérla J1, Schnell M W1 1North Wales NHS Trust (East), Specialist Palliative Care care has usually little time allocated in the PC 1Witten/Herdecke University, Institute for Health Team, Wrexham, United Kingdom, 2North Wales NHS curriculum. Communication and Ethics, Witten, Germany Trust (East), Wrexham, United Kingdom Aim: To bring together clergy and health care professionals involved in palliative care to share Aim: The seminar aims at We report on a novel induction programme that was experiences, deepen mutual understanding of roles and (1) improving specific communication knowledge developed to support junior doctors working in the discuss the orthodox perspective on suffering. concerning care of old people at the end of life and local Specialist Palliative Care Team and Hospice. Method: a two and a half days course was designed. (2) developing the communication skills of the Background: “Suddenly I was launched into a job Three plenary sessions on: pain (based on the total pain participants, focussing on interprofessional aspects. where everyone was dying left, right and centre. And model), theological perspective on suffering and ethical Background: Communication within the none of my friends understood as they hadn’t done a dilemmas were each followed by case studies reflecting multiprofessional team plays an essential role in the job like this one.” (Personal experience of a first year the issues from the plenary and were carried out in patient centred approaches of Palliative Care and doctor). small groups. Participants were allocated to different Geriatrics and is an asset both specialities take pride in. Since 2005 the local team has had first year doctors groups for each case study session to maximise the Therefore, multiprofessional modules recently have rotating every four months. Recently, the potential interaction. Moderators trained in moderating focus been implemented successfully in postgraduate courses psychological burden on very junior doctors working in groups were designated for each group. Raporteurs were on Palliative Care and Geriatrics. However, very little Palliative Care has become apparent. We decided to summarising the discussions, themes that emerged, has been accomplished yet to implement the topic in evaluate the way we train and support junior doctors in issues that generated consensus, disagreement points. the undergraduate education of Nurses and Doctors. our setting, then to revise and develop the support After each case study session the whole group rejoined Therefore, we developed an experimental seminar on structure offered. to present conclusions. interprofessional Communicaton and the needs of the Methods: After consolidating observations from the Results: 74 participants from Romania, Moldova, Elderly at the end of life, taught by an interdisciplinary literature and local experience, we scrutinised the Greece and US attended the course representing team to a group of German Nursing and Medical perceived benefits and disadvantages of junior doctors doctors, nurses, theology teachers, priests, social Undergraduates. working in our setting to inform future direction. This workers. Debates where frequent but a common Methods: A randomized, single-blinded trial will be exercise showed the opportunity of clear benefits, but language was found. Evaluations of the course were performed, measuring quantitative (information flow) also a number of challenging potential disadvantages highly appreciative. A working group was set up to and qualitative (empathy, dominance, etc.) aspects of that may impact on patient care and psychological well- research and prepare a Christian definition of Palliative communication. Videotaped case-discussions between being of the junior doctor. To maintain the benefits we Care as it was felt that western palliative care model single participants of different professions will be the realised that we should compensate as fully as possible coming from a mainly secular society is not responding focus of the evaluation using adopted OSCE- for the disadvantages. We proceeded to develop and to the spiritual needs of predominantly Christian Instruments (Item-Rating, Global-Rating) for implement a novel Induction and Training Programme. societies. A funding proposal has been submitted. The measurement. Salient aspects include an integrated approach and theologian group has put together a proposal to include Results: The results of the quantitative and qualitative harmonising the Programme with the Foundation ministering for the dying as a separate seminar for data analysis and its conclusions will be presented. The Curriculum. The 2 week induction period aims to equip theology students. intervention is still ongoing and due to be finished on the trainee with core skills prior to allowing them to Conclusion: The training was a unique enriching the 15th of November 2008. assess patients unsupervised. The creation of a experience with unexpected action outcomes. The Psychological Support Supervisor aims to provide a interest it generated proved that spiritual care needs to structured, confidential support service away form receive equally attention. Multidisiplinarity was crucial. PE 2.S105 clinical practice. Conclusion: Local development includes regular The clinical diploma in palliative medicine - A review and improvement of the Programme, PE 2.S103 resounding success integration of unselected ‘takes’, and development of a research project into junior doctors’ experiences in Communication with the dying patient - Results Treston P M1, Steering Committee Clinical Diploma in Palliative Medicine to assess the Programme’s efficacy. of a controlled intervention study on Palliative Medicine, RACP Recent academic appointments locally will assist this communication skills in undergraduates 1Mt Olivet, Palliative Care Service, Brisbane, Australia

sessions agenda. Schulz C1, Möller M1, Schmincke-Blau I1, Schnell M W1 Aim: To develop, implement and evaluate a Clinical 1Witten/Herdecke University, Institute for Health Diploma in Palliative Medicine for medical

(Saturday) PE 2.S101 Communication and Ethics, Witten, Germany practitioners. A grant was obtained from the Australian Poster Literary fruits along the palliative way Aim: To assess the effect of a four months intervention Government´s Department of Health and Aging to on develop and pilot a clinical (non-academic) diploma in Retschitzegger H1 (1) factual knowledge in communication, palliative medicine for non-palliative care specialists. 1Hospital of the Sisters of Mercy, Palliative Care Unit, (2) feeling of preparedness for the palliative care The development included the formation of a steering Ried/Innkreis, Austria setting, committee with representatives from General (3) attitude towards death and dying. Practitioner Colleges from Australia and New Zealand Aim: I have attempted to find a new and interesting Methods: A new palliative care curriculum for and specialist colleges, including Medical and Radiation way of talking about palliative care in my educational Undergraduates was implemented at Witten/Herdecke Oncology and Pain Medicine. speaking and lecturing. Medical School and evaluated (09/06-04/07). A total of This committee was then responsible for determining Methods: I took my favourite pastime, which is 31 teaching units (TU=45mins) were delivered to 4th the optimal nature of the clinical exposure for trainees, reading and a love of literature, in general. year medical students (n=15) during the course of 2 designing a curriculum, accrediting training sites and

152 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) supervisors and deciding on assessment processes. inventory concentrated on some issues about research inmates have been trained, some of whom use their The Clinical Diploma program has now been been and education, namely if structured research programs certificate to gain employment after release. the operating in Australia for 3 years , under the auspices of are available, if research is funded, existence of chairs in inmates work as trained volunteers supporting each the Australasian Chapter of Palliative Medicine and has palliative medicine/ nursing or availability of medical other and the prison health service. been awarded to medical practitioners of many specialties in medicine/ nursing. Conclusion: Prisoners can become an effective part of disciplines. The training principles are readily Results: The data delivered an diverse picture of what a palliative care service in prison with training, transported to other countries and the Diploma is now is available across Europe. Important items were among supervision and support. available in Singapore and New Zealand as well. others, that palliative care is not a specialty in each A recent evaluation has confirmed that this is a popular country. Additionally were the financial regulations and highly profitable educational experience. (governmental or non-governmental support) PE 2.S111 organised in different ways. Conclusion: More in depth investigation about the Effects of a multi-professional course for PE 2.S106 research and education situation is needed. First results paediatric palliative care (PPC) in Germany of this study show large differences in standards and Experience of a first 120 hours case seminar finances. The EAPC needs to collaborate about a Henkel W1, Herzog S1, Hechler T1, Zernikow B1 course over a two years period to train in European standard for education in palliative care. 1Children´s Hospital Datteln, Witten/Herdecke palliative medicine in Germany Keywords: Education, research, palliative care, Europe. University, Vodafone Foundation Institute for Children´s Pain Therapy and Paediatric Palliative Care, Freiherr von Hornstein W1, Reiber T1, Meinshausen G1 Datteln, Germany 1Arbeitskreis Palliativmedizin Freiburg, Onkologische PE 2.S109 Schwerpunktpraxis Dr. Reiber, Freiburg im Breisgau, Background: PPC is complex and requires the Germany Education and expertise development in collaborative involvement of health care professionals palliative care in the Netherlands from a variety of backgrounds. To adequately teach In 2003 the German Medical Council (Deutscher those professionals, a 200 hours core curriculum for Ärztetag) wished to further develop Palliative Medicine Groot M M1, Engels Y1, Fokke J1, Vissers K1 multiprofessional PPC courses was developed in (PM) in advising for a new subspeciality. Following this 1University Medical Centre St Radboud, Datteln, Germany. a working group (WG) established itself in a German Anesthesiologie, Pain and Palliative Care, Nijmegen, Aim: We aim to determine the effectiveness of the university city encompassing consultants of different Netherlands course with regards to the participants’ level of specialities looking after terminaly ill patients. The WG knowledge and confidence in PPC and their enlarged itself with a nurse managing a hospice, a Introduction: In order to give optimal and adequate educational needs. Also we want to establish the impact theologian and a lawyer. Since 2004 the working group palliative care, education and expertise development of the course on the personal, professional and team offers on behalf of the Medical Council a basic course are important. In recent years, a growing amount of related developments of the participants. in PM for physicians. To date over 150 physicians have courses and programmes to train (further) Methods: The study has a quasi-experimental design graduated from the programme. (non)professionals involved in palliative care has come with pre-posttest measurement and is partly Aim: A small group of graduates of the basic course on. However, there is no overview of courses, triangulated. We used two questionnaires to obtain pre- wished to continue the training. In response to that educational programmes, and further structural and post-scores on the level of knowledge, self- demand the WG offered on behalf of the Medical educational activities for those (professionally) confidence and educational needs (quantitative Council a first 120 hours case seminar course which involved in palliative care. analysis). The expectations concerning the PPC course ended in October 2008. Besides aiming for the Aims: To get insight in all kinds of structural and the perceived changes during the course were qualification in PM we wanted to find out how the educational activities in palliative care for non- explored in focus group interviews and analysed by participants felt about the course and what major professionals (informal carers, volunteers) and thematic analysis (qualitative analysis). benefits they would have had for their daily practice professionals (physicians, nurses, paramedics, workers Results: 40 professionals (three courses 2007-2008) and themselves. in spiritual care). were recruited for the study. Statistical analysis Methods: In 30 afternoon sessions of 4 units the 16 Study design and methods: We planned to study established an increase in knowledge and self- participants presented cases of their own practice for relevant documents and interview key figures. Within confidence. Analysis of qualitative data revealed that all discussion under the guidance of a supervisor and a these two methods we will focus on the following professional groups benefited in various ways from the consultant in PM. In addition were offered conferences aspects: final attainment levels and competences as multiprofessional approach. The benefit was perceived on ethical/juridical questions, filmed interviews with described in educational documents; educational as dying patients and a visit to a Palliative Care Unit. A methods to train the knowledge, attitudes and skills; (1) an increased understanding of the complexity of special event was when a patient with motor neuron experienced gaps, future plans. PPC, disease, who had founded a support group, volunteered Results & conclusions: The study recently started en (2) a chance for the reflection of own competencies, to talk to the group shortly before he died. will be finished in April 2009. Therefore, we will be able responsibilities, insight, Results: Besides gaining the required sessions to to present our results, conclusions and (3) increased self-confidence as part of a qualify in PM 3 main results appeared. recommendations during the EAPC conference in May multiprofessional team and 1. We are all mortals. 2009. Based on the results recommendations on (4) development of a nationwide network. 2. Our therapeutic possibilities are limited. national policy level as well as on the level of the Some participants (especially physicians) required 3. Do we know what our patients wish? individual training (institutes) can be made. teaching units for each professional groups, to discuss Conclusion: The course has had a huge impact on the specific aspect and gain deeper knowledge. participants not only professionaly but also personaly. Conclusions: The findings indicate effective outcomes The time frame of 2 years helped to change practice and PE 2.S110 of the multiprofessional PPC course. Qualitative specialy allowed personal growth. We are determined to analysis identifies new aspects which have to be find a practical solution to continue the initiated Preparing prisoners to become palliative care considered in further developments of PPC curricula. process like the foundation of a quality circle in PM. supporters in and out of prison

Marston J M1, Visser M2 PE 2.S112 PE 2.S107 1Hospice Palliative Care Association of South Africa, Management-Paediatrics, Bloemfontein, South Africa, Palliative care by the general practitioner in Research and education in palliative care: A 2St Nicholas Children’s Hospice, Training, Flanders: The HiPP-project European perspective Bloemfontein, South Africa Van den Eynden B1, Ceulemans L2, Derycke N3, Woitha K1, Engels Y1, Leppert W2, Ahmed N3, Ahmedzai S Aim: To improve palliative care in a maximum security Demeulenaere P4, Lisaerde J5, Van Bragt J3, De Raedt M5, H3, Noble B4, Gómez-Batiste X5, Paz S6, Jaspers B7, Klaschik prison through training of inmates.Inmates of prisons Thijs G5 E7, Menten J8, van Beek K A L8, Mollard J-M9, Vissers K C1 in South Africa are at increased risk of becoming HIV 1Domus Medica and Centre for Palliative Care Sint- 1Radboud University Nijmegen Medical Centre, positive. Health care resources are available to provide Camillus, University Antwerp, Mortsel, Belgium, Department of Anesthesiology, Pain and Palliative care in the prison hospital for acute illnesses but with 2Domus Medica and Palliatief Netwerk Mechelen, Medicine, Nijmegen, Netherlands, 2Poznan University little support for chroninc conditions. Antwerp, Belgium, 3Domus Medica and Palliatieve of Medical Sciences, Department of Palliative Medicine, Method: A project was initiated with the Mangaung Hulpverlening Antwerpen, Antwerp, Belgium, 4Domus Poznan, Poland, 3School of Medicine and Biomedical Maximum Security prison in Bloemfontien, Free State, Medica and Centre for Palliative Care Sint-Camillus, Sciences University of Sheffield, Academic Unit of South Africa, to build capacity in inmates to provide Antwerp, Belgium, 5Domus Medica, Antwerp, Belgium Supportive Care, Sheffield, United Kingdom, palliative care support for each other both in social 4University of Sheffield, School of Medicine and contact sessions, in the cells, and in the prison hospital. Aim: General practitioners play a crucial role in the Biomedical Sciences University of Sheffield, Academic All prisoners serve long-term sentences with some delivery of good palliative homecare. They need a lot of Unit of Supportive Care, Sheffield, United Kingdom, serving life-sentences. An assessmen tof needs was knowledge and skills essential for offering quality in 5

Institut Català d’Oncologia, Barcelona, Spain, carried out and a professional nurse tutor employed by palliative and end of life care, they need to organize sessions 6Universitat Jaume I, Modulo Departemental T1, the prison, trainined as a trainer in palliative care and continuity, they have to stimulate and to coordinate the Castelló de la Plana, Spain, 7University of Bonn, home-based care, and supported to provide training to interprofessional homecare team. In too many cases

Malteser Hospital Bonn/Rhein-Sieg, Dept. Science and inmates as part of their skills-development programme. these conditions are not reached. (Saturday) Research in Palliative Medicine, Bonn, Germany, Inmates who successfully completed the 3 month Methods: A Working Group within the Scientific 8University Hospital Leuven, Radiotherapy-Oncology, course received a certificate from the local hospice, St Organisation for General Practitioners in Flanders Poster Coordination Palliative Care, Leuven, Belgium, Nicholas Hospice, as completing the national training created, inspired by the success of Golden Standards 9Ensemble Soigner et Acompagner a Paris, Paris, France course for home-based caregivers. Certain inmates are Framework in the UK, a innovative programme permitted to work in the cells and in the prison allowing at the end all GP’s in Flanders to offer a basic Aim: To identify and compare research and education hospital. Reports are given of support given between (golden?) standard palliative care for palliative patients. in palliative care in seven European countries. prisoners , and certain have received further training in The programme is based on 7 essential core tasks Method: During summer 2008 seven European counselling. Prison staff receive in-service training on required for good palliative home care. Another countries (D, E, F, NL, B, ENG, Pl) participated in an the impact of grief and loss on the inmates and their important characteristic of this programme is the open inventory from the European project ‘Best practise in behaviour, which has led to better understanding of the learning aspect: the programme is ICT, e-learning based palliative care in Europe’. The data collection consisted prisoners needs by staff. combined with well-planned facilitation sessions. of expert interviews and a literature search. The Results: The project started in 2001 and to date 580 The implementation happens in different phases.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 153 Poster sessions (Saturday)

During the first one 2 teaching practices acted as pilot that inevitably leads to death? Or do we find other pathologies, but also to neurological, cardiologic and cells: they received e-learning material and life disease to be more charging than cancer? respiratory pathologies as well. The emphasis will be on facilitation sessions around 4 of the core tasks: pain- The aim of the study was equipping the students with the theoretical and and symptom control, communication, coordination • To evaluate which chronic diseases are mostly practical preparation that will allow them to acquire the and care of the dying. For the facilitation sessions a considered to be a ‘sentence’ and what conditions may knowledge and skills demanded by the opportunities script including tasks and assignments is written down, correlate with this attitude. opening up in managed care facilities and hospice facilitators were trained. • suffering from different chronic diseases. structures at both the Regional and National levels. Results: Two master students general medicine studied Material & methods: Self-made questionnaire of 17 Master will be held by 79 university professors and outcome and process of the first implementation questions was prepared. The questions concerned experts, already involved in previous editions, phase.Their findings will be offered in detail. people’s individual opinions and feelings about 15 particularly skilled in palliative medicine. Conclusion: The main conclusion is that this selected chronic diseases. Seventy-two Master’s degrees have been awarded since programme sounds very promising. Enlarging the We surveyed the group of 2002. programme implementation in the second phase to a) 134 students The duration of the Master’s Program is two years and is more various types of practices (solo practices, group b) 57 teachers and office workers (almost 65% of them equal to 60 CFU (University Formative Credits). Credit practices, GP’s with a coordinating task in homes for have higher educational level). attainment is subordinate to the passing of periodic elderly etc.) seems legitimate. Palliative care being Results: Cancer (80,6% of students; 73,7% of 40-year- tests and exams intended to verify the levels of essentially an interprofessional team event makes the olders), HIV/AIDS (81,3%; 68,4%) and multiple sclerosis competence acquired. The awarding of the Master’s future timing when to extend the programme to other (35,1%; 26,3%) are mostly claimed to be a ‘sentence’ in degree depends on the writing of a successful final professional caregivers as nurses and social workers very both groups. These diseases are mostly associated with thesis. Attendance is mandatory. important. greatest suffering and poorest prognosis. The training areas are delineated as follows: Both students and 40-year-olders indicate as less - Bioethics at the end of life tolerated disease HIV/AIDS - 91,8%, 87,7%; - Cultural and Social anthropology PE 2.S113 schizophrenia 54,5%, 52,6% and epilepsy 36,6%, 38,6 - Neuroscience respectively. - Clinical problems in Palliative Therapy Diagnosing dying - A neglected topic in medical Conclusions: Cancer and HIV/AIDS are still believed - Quality and research in Palliative Therapy textbooks to be a ‘sentence’. Respondents found these diseases - Motivation and training of personnel cannot be altered by any treatment. The word - Programming Palliative Therapy Pleschberger S1, Eggenberger E2, Hornek S2 ‘sentence’ is mostly related to the poorest prognosis and The course is open to all graduates in Medicine and 1University of Klagenfurt, Interdisciplinary Faculty, the greatest suffering due to the disease. Surgery. Palliative Care and Organisational Ethics, Vienna, Graduating students will be admitted at registration Austria, 2University of Klagenfurt, Palliative Care and provided they attain their degrees before the course Organisational Ethics, Vienna, Austria PE 2.S116 begins. The minimum number of participants is 15, the maximum is 30. Aim: It is evident that recognising dying is Dissemination of research results over the internet fundamental for good end of life care. Therefore it is of - A web-based anthology of palliative care interest whether medical doctors are being taught how PE 2.S119 to do so within their studies. This paper focuses on the Öhlén J1, Andersson M2, Fransson R3, Lindquist I1 way in which issues of death and dying are approached 1Sahlgrenska Academy at the University of Gothenburg, Palliative sedation in the Netherlands: A lesson in textbooks as basic reading for medical students. Institute of Health Care Sciences, Gothenburg, Sweden, for professional caregivers Method: A representative sample of recommended 2Eslöv Community, Eslöv, Sweden, 3Vårdal Institutet, medical textbooks (n=40) for medical students at University of Lund, Lund, Sweden van der Breggen J M1, van der Heide A2 universities in Austria and Germany was analysed. The 1Integraal Kankercentrum Rotterdam, Department sample covers nine different medical disciplines at six Generic palliative care is increasingly considered an Palliative Care Comprehensive Cancer Centre different universities with books in both German and essential part of meeting the needs of diverse groups of Rotterdam (CCCR), Rotterdam, Netherlands, 2Erasmus English. The focus of the analysis was to find out end-of-life patients. For this reason, it is particularly University, Department of Public Health, Rotterdam, whether dying is defined, which factors are mentioned important to increase the body of palliative care Netherlands to determine dying and whether there are references to knowledge and disseminate it to personnel in a variety of palliative care or not. elderly care contexts. The Swedish research institute, Aims: Palliative sedation is a last resort option for Results: Issues of end-of-life care are covered in Vårdal Institutet took the initiative to set up a virtual terminal patients with refractory symptoms. The medical textbooks, though they only form about 1% of room with the theme of palliative care in Sweden, as part national Dutch guideline states that the use of palliative all pages in each book on average and 2% at most. of a larger project encompassing eight virtual rooms with sedation should be limited to patients with a life Contents differs between the subjects: Surgery seemed diverse health care themes. The aim of this presentation expectancy of two weeks at most, but such a prognosis to be focussed on issues of indication with regard to a is to give an overview of the virtual thematic room for is often very difficult to ascertain. Further, the cost-benefit analysis of a certain intervention. Internal palliative care and issues related to the dissemination of distinction between palliative sedation and euthanasia medicine and oncology instead covered a broad range knowledge to staff involved in elderly care. The virtual is often unclear for patients, families and also of issues, and listed a broad number of more or less room presents reviews of recent research organized into professional caregivers, which may result in specific symptoms of dying. The latest issues of the following themes: palliative care, relief of symptoms, uncertainty, miscommunication and sometimes abuse textbooks include a growing amount of information life issues, significant others, and team work. The room of palliative sedation. Efforts to enhance the about palliative care. Palliative medicine, finally, also contains articles on each theme written by experts distinctness of this practice by increasing knowledge provides the context for the most elaborate debate of for the general public. Twenty of these are currently and awareness of the criteria in the guideline are how dying can be “diagnosed”, though even this available for download and there are more being therefore needed. discipline seems to lack a specific definition of dying. published all the time. In addition to these articles, the Methods and results: The Committee on Quality and Conclusion: Though palliative medicine is becoming room contains palliative care news bulletins and Development of Consultation of the department of an accepted specialty in German speaking countries, reference lists for text books, dissertations, fiction and Palliative Care of the Comprehensive Cancer Centre end-of-life care, especially diagnosing dying, is still a biographies, and books for children. The “current Rotterdam (CCCR) has developed a lesson on palliative neglected issue in medical textbooks. This also shows profile” and “good example” presentations are sedation. The aim of the lesson is educating both that dying is a complex phenomenon and its beginning constantly updated. As this particular website is part of a physicians and nurses on the assessment of refractory and “definition” is difficult to grasp on clinical grounds larger virtual project, links and references to related symptoms; on the aims, techniques and possible effects alone. To close this gap, references to other disciplines issues such as “Living with chronic pain” and “Nutrition of both temporary/intermittent sedation and to cover spiritual, social and psychological issues are and eating” can easily be created, The virtual room also continuous deep sedation until death; and on required within medical textbooks. suggests syllabuses for palliative care workshops intended communicative aspects. The lesson takes 3 hours and is for the further education of elderly care personnel and given by a consultant-physician and a nurse. The CCCR others, and these syllabuses make use of the articles provides train-the-trainer courses for these consultant- PE 2.S114 published on the website. In conclusion, the virtual physicians and nurses in order to have experts in every thematic room is a flexible, web-based anthology of network in our region. Withdrawn interest and relevance to a wide range of readers The lesson is given 28 times in 2008, and is evaluated interested in palliative care. by asking trainees about their experiences. The results of the evaluation will be available in 2009. PE 2.S115 Conclusion: Multidisciplinary educational efforts that PE 2.S117 use palliatieve care networks and a train-the-trainer SENTENCE - Which of diagnosis is a “sentence”? approach potentially reach a large group of The comparative study of attitudes towards Withdrawn professionals and organisations at once. This can result different chronic diseases in better communication between caregivers and a less

sessions ambiguous practise. Osowicka M1, Lichodziejewska-Niemierko M1, Przybyslawski PE 2.S118 B2, Cytawa W3, Biziuk M4 1

(Saturday) Medical University of Gdansk, Department of Palliative Educational training in palliative medicine - The PE 2.S120 Care, Gdansk, Poland, 2Medical University of Gdansk, experience of the University of Turin Poster Gdansk, Poland, 3Medical University of Gdansk, Palliative care in the ITU - The intensivist Department of Nuclear Medicine, 4Medical University Vignotto F1, Mussa A1, De Luca A1 perspective of Gdansk, Department of Family Medicine 1AOU S.Giovanni Battista, Torino, Italy McKeown A1, Cairns C2, Cornbleet M1, Longmate A2 Background: Palliative care (according to WHO) is For the academic year of 2008-2009, The University of 1Strathcarron Hospice, Denny, United Kingdom, the active holistic care of patients with advanced Turin has reactivated the IV Master’s programme in 2Stirling Royal Infirmary Intensive Therapy Unit, ITU progressive illness. In spite of increasing number of Palliative Medicine. and Anaesthetics, Stirling, United Kingdom patients suffering from chronic diseases ,they don’t get The main objective is to train professionals to operate in sufficient supportive care. Palliative care is still mainly the field of Palliative Medicine, giving them the Aims: Palliative Medicine is a growing specialty with a given to cancer patients. Is it still a true that the necessary skills both from the general and specific point non-malignant agenda becoming more prominent. diagnosis of cancer sounds like a ‘sentence’ - a disease of view. Attention will be paid not only to oncologic This has seen the palliative perspective expand into

154 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) acute settings, an example of which is the recognition PE 2.S122 improve liaison and understanding, with the aim of of the need for good quality end-of-life-care (EOLC) in improving the quality of life of ID clients with Intensive Therapy Units (ITU). By identifying the A longitudinal study of the prognostic role of progressive disease. differences and challenges of providing EOLC the quality of life factors on length of survival of researchers hope to enable improvement in palliative terminal cancer patients receiving palliative care in the ITU. care in Taiwan PE 2.S124 This study aims to explore in depth the ITU teams’ opinions of the difficulties of providing palliative care Lin C-C1 Medication at the end of life for motor neurone in an Intensivist setting. Specific topics to be explored 1Taipei Medical University, Taipei, Taiwan, Republic of disease include: China - Difficulties of providing EOLC in ITU; Oliver D J1, Tallon C2, Sykes N3, Sloan R4, Campbell C5, - How palliative patients are identified; Aim: This study, one of only a few to do so, explores O’Brien T6, Taylor J1 - Communication within the ITU; the significance of quality of life parameters for 1Wisdom Hospice, Rochester, United Kingdom, - Involvement of family; predicting length of survival of patients with terminal 2Cynthia Spencer Hospice, Northampton, United - The development of Palliative Medicine in ITU. cancer. Kingdom, 3St Christopher’s Hospice, London, United Methods: This was a qualitative interview based study Methods: Weekly assessment of 180 terminal cancer Kingdom, 4Weldmar Hospicecare Trust, Dorchester, utilising the “general interview guide approach”, as patients was carried out throughout their survival time United Kingdom, 5St Catherine’s Hospice, Scarborough, described by Patton. All recorded interviews were using the (Medical Outcome Study) MOS 36-Item United Kingdom, 6Marymount Hospice, Cork, Ireland analysed with a qualitative content analysis package. To Short-Form Health Survey, the Taiwanese version of increase validity transcripts of interviews were returned the M.D. Anderson Symptom Inventory (MDASI-T), There has been increasing pressure to provide palliative to a 60% sample of the interviewees for review. the Karnofsky Performance Status (KPS), the Brief Pain care for people with MND/ALS. There are many fears of Results: 25 interviews were completed. Generally Inventory and the Brief Fatigue Inventory. Generalized patients and their families about the final stages of the teams felt communication and symptom control was of Estimating Equations were utilized to account for the disease progression and professional carers often fear a good standard, and that the ITU had a number of dependence of repeated measurement and to analyze the use of medication, in particular opioids. advantages over general wards in provision of EOLC, whether the quality of life parameters predicted Aim: This study aimed to show the medication used specifically availability of anaesthetic support and good survival time. within specialist palliative care units in the end of life nursing ratios. However the majority of staff felt poorly Results: The univariate analysis showed that gender, care for people with MND/ALS. educated in palliative care and many felt that patients KPS, the Physical Component Summary (PCS) score, Methods: A questionnaire was developed to record often underwent unnecessary interventions prior to the MDASI-T total score, composite fatigue severity, medication given to patients with MND/ALS in the last death. There were also a number of issues surrounding and composite pain severity were significantly 72 hours of life, together with basic information about environment, decision-making and continuity of care associated with length of survival of terminal care the patient and disease progression. Six hospices in the within ITU. patients. Moreover, the univariate analysis showed that UK and Ireland agreed to complete the details of the last Conclusion: The provision of palliative care in the ITU most items in the MDASI-T were also related to survival 10 patients who had died under their care in the presents unique challenges not found in other settings. time. In the final model, the multivariate analysis hospice. While staff felt ITU is not an ideal setting for EOLC for a showed that gender, KPS, and the MDASI-T total score Results: 60 patients were analysed and the results show variety of reasons, they also presented a number of were significant predictors of survival time. that medication is usually necessary in the control of advantages to its provision there. Areas for further Conclusions: This is the first study to explore the symptoms at the end of life. These are commonly examination include decision-making and education of prognostic significance of quality of life parameters to morphine as analgesic, midazolam as sedative and the ITU team. length of survival of patients with terminal cancer muscle relaxant and glycopyrronium bromide to reduce using information collected weekly throughout the lung secretions. terminal phase and employing the GEE method to Discussion: Many patients with MND/ALS, their PE 2.S121 account for the dependence of repeated families and carers and often the professional carers measurements. While traditional analytic methods fear the final stages of the progression of MND/ALS - Prime tasks of our palliative consulting team at suggest prognostic significance of quality of life fearing in particular pain, dyspnoea and choking. These the Wilhelminenhospital in Vienna: An parameters, this study confirms that overall symptom results show that the medication used at the end of life evaluation from september 2007 - august 2008 severity and functional status are the strongest factors to manage difficult symptoms does not differ greatly to in assessing the length of survival of terminal cancer those used with other conditions. People with Seemann H1, Heidegger D1, Werni M1, Hörnlein B2 patients. MND/ALS, their families and health professionals can 1Wilhelminenspital, Palliative Care Consulting Team, be reassured that after appropriate symptom assessment Vienna, Austria, 2Wilhelminenspital, Medical Head the careful use of opioids, and other medication, is Office, Vienna, Austria PE 2.S123 helpful and appropriate at the end of life. The symptoms at teh end of life can be effectively and Background: The Palliative Consulting Team at the Knowledge and attitudes of intellectual appropraiately managed similarly to other patient Wilhelminenhospital, a medical center with 1092 beds, disability and palliative care by specialist groups receiving palliative care. was established to meet the special needs of patients palliative care teams and ID carers in Kent with advanced and incurable diseases, and to support caregivers in all problems and issues. Oliver D J1, Forrester-Jones R2, Duplock L2 PE 2.S125 Methods: Between September 2007 and August 2008, 1University of Kent, Centre for Work and Learning, we evaluated the most important tasks of a palliative Chatham, United Kingdom, 2University of Kent, Predictors of home death among palliative care consulting team in hospital. Tizard Centre, Canterbury, United Kingdom cancer patients in a primary care setting Results: Results showed that the main tasks were to attend to patients and their families, to regularly adjust People with intellectual disability (ID) have been Neergaard M A1, Olesen F1, Jensen A B2, Sondergaard J3 the treatment concept, to inform, to guide and organize shown to have increased health and palliative care 1University of Aarhus, Research Unit of General within the framework of discharge, to control needs as they grow older, including progressive Practice, Aarhus, Denmark, 2Aarhus University Hospital, symptoms, advance other units, communicate with diseases such as cancer, heart and respiratory disease Oncology Department, Aarhus, Denmark, 3University and within the care team and help fulfill patients’ last and dementia. There is evidence of limited palliative of Southern Denmark, Research Unit of General wishes. Most of the patients observed in this period care provision for ID patients. Practice, Odense, Denmark suffered from 8 to 18 symptoms. The most prominent Aims: The aim of these two studies was to investigate were weakness, fatigue due to tumor anemia, loss of the knowledge and attitudesof both specialist Background: In most western countries, the majority appetite, dry mouth, depression, anorexia and pain. palliative care providers of ID and paid carers of ID of of palliative cancer patients wish to die at home, where At the time of initial evaluation 30% of the patients each other´s specialism, with the objective of GPs are often deeply involved. However, most research suffered from pain at level 4 on the numerical rating delineating whether such attitudes or systems reduce focuses on specialised palliative care, which results in a scale. Due to intensive cooperation with mobile the palliative care of people with ID. lack of reliable predictors of home death in primary palliative care teams and social bases it was possible to Methods: A series of focus groups were held with care. discharge 46% of all palliative care patients. 18% of the specialist palliative care teams and formal carers of Aim: To analyse predictors of home death among palliative care patients were accommodated for further people with ID to ascertain their knowledge, deceased palliative cancer patients in a primary care care to a hospice or a palliative care unit. A palliative perceptions and attitudes of ID and palliative care setting. home care team was organized for 74% of the patients. services. Methods: Using Danish registers, we identified 787 The Palliative Consulting Team provided much internal Results: The data showed that involvement of deceased cancer patients and sent a questionnaire to and external training hence succeeding in making the specialist palliative care services for people with their GPs. The questions concerned the GPs’ way of palliative thinking more transparent. intellectual disability was small. Palliative care involvement and the duration of the palliative period at All of the patients visited were made aware of the specialists expressed the view that their training and home. We analysed the data using a model adjusted for possibility to express their last wishes to maintain the knowledge of this patient group is also low, resulting confounders (e.g. patient’s sex, age, marital status, type

patients’ highest possible autonomy. in anxieties as to how to adequately care for this of cancer), with independent variables such as the GP’s sessions Conclusion: In conclusion, our main goals were to patient group. knowledge of the patient prior to the palliative period, elevate the standard care of terminally ill patients and Similarly there was also little understanding of whether the GP had made home visits, whether the GP

their families by contributing our expertise, the palliative care services by ID services, and carers had planned who to contact out-of-hours, and whether (Saturday) improvement of pain therapy and symptom control shared concerns that palliative care services may not the GP had had contact with the relatives. and to advise care givers in complex situations of always wish to or were not always appropriately able Results: 350 questionnaires were filled out. In the Poster palliative care and ethical issues. to care for people with ID. preliminary analysis we found that even though many Conclusion: Shared education of specialist palliative patients died in hospital, this group spent nearly as care providers and ID carers is necessary to increase much of their last time at home as the patients who mutual understanding, so that care can be provided actually died at home. The analysis of the GPs’ in a collaborative way. Whilst there may be no involvement is still ongoing. obvious discrimination against these patients there is Conclusion: The results of GP involvement in home a need for greater awareness of ID amongst staff, at all death will be presented. More specific research levels, so that the needs of people with ID can be concerning palliation in primary care is still needed. addressed adequately, and appropriately. The development of links between teams was felt to

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 155 Poster sessions (Saturday)

PE 2.S126 hospice. Nearly half of the patients´ families think that, emerging themes using thematic analysis. for them, the biggest problem is their own inability to Results and discussion: The findings of this study Identifying professional barriers and facilitators take care of the patients. For the personnel the work in suggest that poorly coordinated service provision to discussing future care and preferred place of a hospice is a physical and psychical burden. Therefore impacts upon enabling patients with cancer, who wish death with patients who have advanced cancer one should consider the possibility of enlarging the to die at home to achieve this goal. Poor discharge employment - concentrating on hiring medical care planning from the hospital, including a lack of Mason B1, Murray S1, Boyd K1, Kendall M1, Barclay S2, nurses. communication with the community nursing team, Sheikh A1, Thomas K3 coupled with delays in commencing additional care 1The University of Edinburgh, General Practice Section, services and the delivery of equipment are all identified Edinburgh, United Kingdom, 2Cambridge University, PE 2.S128 as influencing factors. This paper discusses these Institute of Public Health, Cambridge, United Kingdom, findings and recommendations for improving the 3The University of Birmingham, Nursing & ´What evidence is there about the specific services offered to terminally ill cancer patients and Physiotherapy, Birmingham, United Kingdom environmental needs of older people who are their families will be given. near the end of life and are cared for in hospices Aim: UK end-of-life care initiatives recommend that or similar institutions?´ A literature review the preferences of patients with advanced cancer and PE 2.S130 their families inform care planning. Advance Care Rigby J S1, Payne S1, Froggatt K1 Planning (ACP) may help achieve this. Therefore we 1Lancaster University, International Obsevatory on End The management of diabetes mellitus in piloted the implementation of an ACP toolkit based on of Life Care, Lancaster, United Kingdom pallaitive patients including patients on the the UK Gold Standards Framework (GSF) Liverpool Care Pathway for the dying patient documentation and to identify key issues for general Background: In Western countries, an increasing practitioners and community nurses in talking with proportion of patients requiring palliative care are aged McKenna E1, Chapman L2, Hutchinson T3 patients and families about their future care, including over 65 years. However, very little is known about the 1Marie Curie Hospice/ Marie Curie Institute, Palliative place of death. type of physical environment most suitable for their Care Registrar, Liverpool, United Kingdom, 2Marie Methods: We recruited four general practices in South care. Curie Institute/ Royal Liverpool Hospital, Palliative Care East Scotland. Semi-structured interviews (n=28) with Aims: To conduct a literature review addressing the Department, Liverpool, United Kingdom, 3Royal practitioners and community nurses in these practices question: ´what evidence is there about the specific Liverpool Hospital, Palliative Care Department, identified current practice, and key issues in discussing environmental needs of older people who are near the Liverpool, United Kingdom end-of life care. An interactive training workshop in end of life and are cared for in hospices or similar ACP and the use of the pilot toolkit was then conducted institutions?´ Aim: Identify management issues in diabetic palliative at each practice. Three months after the intervention, Method: The BNI, CINAHL, Cochrane Library, care patients including patients dying on LCP. we re-interviewed the participants (n=25) in order to Medline, Proquest, PsycInfo, SocSci Citation Index, Background: The current prevalence of diabetes identify the issues that they encountered in Social Care Online and ASSIA databases were mellitus is 2-4%, which is reflected in the patients implementing ACP and to reflect on the training. systematically searched for papers meeting the encountered by palliative care services. Transcripts of the interviews and workshops were inclusion criteria (published after 1997; relating to the Methods: An audit of palliative care patients with entered into the qualitative software package NVivo 7 physical environment of care for in-patients over 65 in diabetes in all palliative care settings. and analysed thematically. the last year of life). Four key journals were hand 2 questionnaires were created. Results: All participating practices had a palliative care searched. Relevant references were followed up. First sent out to all clinical palliative care specialists register in line with the GSF but structured ACP was Emerging findings: 16 papers met the inclusion assessing current number of patients affected by rarely being undertaken. Clinicians reported anxiety criteria, although 15 of these only mentioned the diabetes and their management. over the wording and timing of discussions about end- physical environment briefly. Ten of the studies were Second prospective questionnaire examining of-life care which, if they occurred, were often triggered conducted in nursing homes, and none were in management of diabetic patients on LCP. by a decline in the patient’s condition. Before the hospices. Only six studies included the views of Results: 96 responses from all clinical palliative care intervention, clinicians had almost no knowledge patients; the others sought the views of families and specialists including allied health professionals received about ACP documents. The intervention and follow-up professionals. Several themes were identified: from questionnaire 1. revealed a significant mis-match between clinician (1) ´Homeliness´: Older people wanted to personalise 60% had ≤ 10 diabetic palliative care patients. understandings of when to start an ACP and GSF their own space, eg with photographs, ornaments and Sulphonylureas main hypoglycaemic of choice. recommendations that will need to be addressed. religious symbols. 35% using short acting insulin for management of Conclusion: This study refined our intervention (2) Privacy and Quiet: Single rooms were preferred by hyperglycaemia. (toolkit and training) for a planned larger trial that will most patients and families. Excessive noise was viewed 7 responses received for questionnaire 2. include the perspectives of professionals, patients and negatively. All patients were Type 2 Diabetics whose carers. The findings will be of interest to those planning (3) Access to the outdoors: Patients and families valued hypoglycaemics stopped once LCP started. Majority of similar studies or service developments. accessible outdoor spaces, and rooms with windows patients had not discussed their diabetic management giving sunlight, fresh air and interesting views. prior to starting LCP. Only 10% of patients and carers (4) Staff Needs: Buildings were not always designed to were given information regarding diabetic PE 2.S127 allow staff to work safely and efficiently. management once LCP started. Conclusion: In some cases, relatively simple changes Conclusion: The key recommendations include: Evaluation of the quality of palliative care in to the physical environment might enhance quality of - The need to discuss management and relaxing of stationary hospices from the perspective of life for older patients at the end of life. However, other diabetic medication of diabetes with patient / family as patients/their families and those performing the adaptations might be more difficult and costly, and it is oral intake declines and before patient is started on LCP. care important that they are preceded by thorough research - Sliding scales of insulin should not be used. into stakeholders´ needs. - Early specialist advice from PCT and Diabetes Pietruk K1, Doboszynska A2 specialists should be sought if 1Medical University of Warsaw, Clinical Nursing 1. Patient symptomatic from hyper/hypoglycaemia Department, Warsaw, Poland, 2Medical University of PE 2.S129 2. Diabetic complications Warsaw, Warsaw, Poland - If dying and unable to take fluids /medication, stop The impact of poor coordination of community oral hypoglycaemics/ insulin in Type 2 diabetes. Aims: The aim of the research was to evaluate the service provision on end of life care for patients - Terminal phase in Type 1 diabetes - may be worth quality of palliative care in the stationary hospice. with cancer considering maintaining patient on insulin at reduced Finding recommendations for a strategy of the care dose to limit risk of symptomatic ketoacidosis. quality improvement was an indirect aim of this O’Brien M1, Jack B2 - The results of this study will form part of the research. 1Edge Hill University, Evidence-based Practice Research Merseyside and Cheshire palliative care network Methods: The research was realised between March Centre, Ormskirk, United Kingdom, 2Edge Hill guidelines. and August 2008 in a stationary hospice in the University/Marie Curie Institute, Evidence-based Mazowieckie Voivodeship. The research group Practice Research Centre, Ormskirk, United Kingdom comprised of 120 people - 20 people performing PE 2.S131 professional medical care, 50 patients and their Background: Providing service users with a say in families, and 50 students of the Warsaw Medical their care is integral to UK government health policies. A survey of experiences and views of doctors University. For patients dying of cancer there is an emphasis on working in an Irish teaching hospital to Results: As regards the hospice, the expectations of the giving choice regarding their preferred location for prognostication families are that: the patient will not suffer (85%), care, which includes the option of dying at home. he/she will feel safe (80%), and will receive spiritual Initiatives such as the End of Life Care Programme that Stone C A1 support (61%). At the same time, 85% of the group promote patients choices including their preferred 1Our Lady’s Hospice, Education & Research

sessions stated that their expectations are fully fulfilled by the place of death the have been established However Department, Dublin, Ireland stationary hospice. For 47% the patients´ families, the despite these policies the situation persists where biggest problem in a hospice is their own inability to patients are being admitted to hospital in the terminal Aims: The aim of this study was to explore the

(Saturday) perform such care (47,6%) and their helplessness phase of their illness when they have expressed a desire knowledge and attitudes of doctors in an Irish teaching (38%). In the opinion of 8% of the students, 47% of the to die at home. hospital to prognostication. This study was conducted Poster patients´ families and 14% of the employees, the Aim: The study aimed to investigate the views of in order to inform development of strategies to advance patients are very pleased with their stay in a stationary community nurses involved in end of life care for patient care and medical decision-making through hospice. According to 48% of the students and 85% of people with cancer in an attempt to explore the factors improved accuracy and communication of the medical personnel, the quality of the care on the that influence where they are cared for and ultimately prognostication. ward would significantly rise if the medical team was die. Methods: Questionnaire development was informed larger, medical care nurses were employed (57%vs85%), Methodology: A qualitative study, using audio tape- by a review of the literature. The target population more time was devoted to patients (14%vs16%), and recorded focus group interviews was employed for the consisted of all doctors working in St Vincent’s free time activities were organised for patients study. A purposive sample of 19 district nurses and University Hospital, except those working in specialities (16%vs25%). community specialist palliative care nurses from across associated with minimal likelihood of caring for Conclusions: According to most respondents, the two primary care trusts in the North West of England patients with advanced disease. Survey distribution was patients are satisfied with the stay in a stationary participated in two focus groups. Data were analysed for conducted using an individualised approach.

156 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

Results: Sixty-two doctors returned the completed Aim: The aim of our study was to profile this group who had a cancer diagnosis. Most (11) were terminally questionnaire (response rate 35%). Junior doctors and identify factors suggesting end of life which may be ill, and 9 died during the course of the study. Data receive requests for estimation of survival from patients used as predictors for those who may benefit from collection methods consisted mainly of prolonged and relatives as often as senior colleagues, but are less termination of dialysis. periods of participant observation. likely to have a pro-active approach to disclosure of Methods: A retrospective review of all deaths in Results: It was important to look at each person’s life prognosis to patients. Patients’ family members request patients on dialysis in St Vincent´s Health, Mebourne, story before their experience of cancer/terminal information regarding prognosis more frequently than over a two year period from March 2005 to February illness/dying could be understood. The lives of the patients, however the doctors surveyed respect the 2007 was undertaken. Patients dialysed continuously participants were defined by their dependence on patient’s right to control what information their for three months or more were included. Those others. Features of their cancer journey included late relatives and they themselves receive. Doctors under- considered for transplantation were excluded. Patient diagnosis, and a lack of involvement in decision recognise the precedence of the prognostic value of demographics including co-morbidities, whether the making around treatment. Social networks were mostly signs and symptoms during the period of terminal death was expected, specialist palliative care poor. Families (in particular parents and siblings) were decline and have limited acknowledgement of the involvement, place of death, and factors influencing an important part of participants’ support network. prognostic relevance of performance status in all the decision to terminate were collected. Paid carers, especially those in residential homes, had a patients with metastatic incurable cancer. Professed Results: There were 78 deaths during this period, an difficult task and needed much support. attitudes suggest ambivalence over disclosure of 18% annual mortality. The mean dialysis duration was Conclusion: High quality end-of-life care to people prognosis; whilst there was considerable agreement 33 months. The majority of deaths occurred in acute with ID requires the presence of warm and empathizing with the need for patients to have access to accurate hospitals (81%), with only 14% dying in specialist carers, combined with competent symptom control information regarding prognosis, the majority (69%) palliative care units. Only four patients (5%) died at and support for the carers. This was not achieved for believe that the communication of prognosis to home. any of the research participants. patients may itself have an impact on survival. 90% of deaths were expected, yet of these termination Conclusions: A teaching program which targets the was chosen in only 25%. Specialist palliative care team identified gaps in knowledge, encourages consideration was consulted in 29% of patients, usually within two PE 2.S136 and debate of the issue of self-fulfilling prophesy and days of death. provides practical training on communication of The average duration between last dialysis and death Hospice home visits of the Regional Hospice prognosis should be developed. was 2.13 days for all patients, but in those for whom Centre Zagreb dialysis was terminated, time to dying was 5.67 days (3- 17). The average final in-patient admission was 23 days. Rimac M1 PE 2.S132 Conclusions: Our study confirmed a high mortality. It 1Croatian Association for Hospice/PC, Emergency also showed predictability of death, but despite this the Centre of Zagreb, Zagreb, Croatia The role and involvement of the specialized majority of patients did not benefit from the comfort of supporting health service “LEIF physicians” in termination. Prolonged hospital admission, advancing The aim of this report is to show the basic structure of end-of-life decision making in Belgium age and a comorbidity of ischaemic heart disease are all patients that have been in the care of Regional Hospice positive predictors for death. The trajectory of life Centre Zagreb on the voluntary basis. Van Wesemael Y1, Cohen J1, Onwuteaka-Phillipsen B2, following dialysis cessation is very variable. The data listed here refer to the period from September Bilsen J1, Deliens L3 2005 till February 2008., and the data were tkken from 1Vrije Universiteit Brussel, Jette, Belgium, 2EMGO our book evidence. Institute, VU University Medical Center, Amsterdam, PE 2.S134 The patients are listed according to their age, sex, Netherlands, 3Vrije Universiteit Brussel, EMGO diagnosis, leading symptoms, the way of coming into Institute, VU University Medical Center, Amsterdam, Preferred place of care for people with the center, the period of waiting for the first visit, the Jette, Belgium intellectual disabilities (ID) who are terminally place of death. There were total of 520 patients in our ill care: 288 women and 232 men. Aim: In 2003, after the euthanasia law was passed, The majority of patients were between 70 and 80 (total LifeEnd Information Forum (LEIF) was founded in Tuffrey-Wijne I1, Bernal J2, Hollins S3 of 130, 75 women and 55 men). Belgium to train physicians to consult, advice, and 1St George’s University of London, Division of Mental According to the diagnosis the majority of patients had inform about end-of-life care decisions and euthanasia. Health, SW RE, United Kingdom, 2Cornwall Partnership lungs cancer and bronchial cancer (total of 82, 60 men So far,evaluation of this supporting health service is NHS Trust, Medical Department, Redruth, United and 22 women). The number of women with breast lacking. This study describes number and content of Kingdom, 3St George’s University of London, Division cancer was 42 and the number of women with requests LEIF-physicians receive in a one-year period, of Mental Health, London, United Kingdom gynaecological diseases was 40. including palliative care related issues. The patients have been waiting for the first home visit Methods: All 128 active LEIF-physician were sent a Aims: To explore issues around assessing the needs of for 1 to even 20 days (some of the patients died before questionnaire asking about demographics, training in people with ID who have been diagnosed with a life- the arrival of the team and some were taken back to end-of-life care, and consultation and information limiting illness, in order to establish preferred place of hospitals by their families). requests from May 2007-May 2008. care. The main symptom and the main reason for calling the Results: Response percentage was 75%. 73% of Methods: This paper is based on the findings of a 3 palliative care hospice was pain i.e. inadequate respondents were GP, 26% were part of a palliative care year ethnographic study of the experiences of people analgesia, sub-dosage, irregular taking of analgesics, team, 41% followed postgraduate studies in palliative with ID who have cancer. Data were mostly obtained avoiding morphine substances and very often care, and 72% had some form of additional palliative through extended participant observation of the person application of fentanile sticking plasters with no effect. care training. with ID, including conversations with family and The average period of care has been about 50 days. In one year they received 2518 requests for information carers. The needs of 13 people with ID and cancer were The most frequent place of death is the home of the by patients mostly about living wills (n=656), the legal analysed. patient (for those who have longer been in care), procedure of euthanasia (n=623), palliative care Findings: The findings will be presented through the hospital (for those who came late) and in Old People´s (n=533), and 1491 requests by physicians, of which 37% stories of 3 participants. The focus of assessment should Homes and other institutions for care and nursing. (n=545) was about the legal procedure or practical be the person’s life story and quality of life, and the Conclusion: We have met a very complicated cases in performance of euthanasia. impact of illness and physical deterioration. Important our work. Respondents were contacted 550 times for consultation aspects of assessment include: the person’s place in In order to be able to fulfil the needs of patients in the with attending physician and patient regarding a his/her family; their care history; the important areas in end of life and to help their families we need PC specific end-of-life decision. Of these cases 65% ensued their life, including areas of enjoyment; available integrated in the health system. It is necessary to have from a patient request for physician-assisted death, and support; current health needs and anticipated future teams who would work full time (the patients for 57% (n=311) an actual consultation as a second health needs, including pain and other symptoms; shouldn´t wait for the doctors-volunteers). physician as prescribed by the euthanasia law was insight and understanding; and issues around capacity made. All due care criteria were judged to be met in 284 and consent. cases (91% of actual consultations); 219 of these cases Conclusion: No assumptions can be made about PE 2.S137 (77%) ended in euthanasia. preferred place of care. Needs can change frequently Conclusion: LEIF-physicians are more often consulted and rapidly. The end-of-life care needs assessment of Use of a multidisciplinary institutional protocol by patients than by physicians. In these, patients people with ID is complex. The expertise and on continuous palliative sedation until death address a broad spectrum of end of life issues, including involvement of primary carers is crucial, but this based on the Dutch guideline ‘Palliative on palliative care. Physicians mainly contact LEIF- should be supported by professionals who can give Sedation’ physicians for concrete information about euthanasia support to both the person with ID and his/her carers and for actual consultation as second physicians in and family. van Dijk H1, van Zuylen C1, Huygen F J P M2, van Veluw H cases of patients requesting euthanasia in order to reach T M1, van der Rijt C C D1 a well-considered decision. 1Erasmus MC, Medical Oncology, Rotterdam, Funded: IWT-Flanders. PE 2.S135 Netherlands, 2Erasmus MC, Anesthesiology, Rotterdam,

Netherlands sessions The end-of-life experiences of people with PE 2.S133 intellectual disabilities (ID) who have cancer Introduction: In the Erasmus MC a multidisciplinary

protocol for continuous palliative sedation until death (Saturday) Mortality in the dialysis population - When Tuffrey-Wijne I1, Bernal J2, Hollins S1 (CPS) was developed. The protocol was based on the should termination be considered? 1St George’s University of London, Division of Mental Dutch guideline ‘Palliative Sedation’, in 2005 launched Poster Health, London, United Kingdom, 2Cornwall by the Royal Dutch Medical Association. The protocol is Murtagh C1, Austin H1, Philip J1, Gock H2 Partnership NHS Trust, Medical Department, Redruth, written as a checklist. At start, the patient’s current state 1Caritas Christi Hospice, Melbourne, Australia, 2St United Kingdom has to be clarified. Next, the conditions for palliative Vincent’s Hospital, Nephrology, Melbourne, Australia sedation have to be checked by tick box items. In case Aims: To gain insight into the end-of- life experiences of a medical indication for CPS, care givers are Inherent to the rise in the number of patients on people with ID who have cancer, from their own supported in giving appropriate information to patients dialysis is an increase in the number of patients dying perspectives. and relatives about the sedation procedure and in on dialysis. Despite this high mortality there is a Methods: This was a 3 year study, using ethnographic asking informed consent of the patient and/or the paucity of literature on the process of dying in this methodology and Grounded Theory. The participants relatives. The protocol also contains a medication population. were 13 people with ID ranging from mild to severe advice and gives criteria when to ask the hospital Expert

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 157 Poster sessions (Saturday)

team for Pain and Palliative Care for advice. proposed to address issues of hydration at the end-of- PE 2.S141 Methods: In March 2007 the protocol for CPS was life. Cognitive ‘think aloud’ interviews were conducted introduced in Erasmus MC. To evaluate the with 12 bereaved relatives to ensure that questions were Developing competencies for end-of-life care in appropriateness and use of the protocol, the caregivers relevant and understandable. These questions formed care homes were asked to return a copy of the used checklist after part of Evaluating Care & Health Outcomes-for the each procedure CPS. Dying (ECHO-D), a 94 item postal self-completion Beech N1, Lansdell J1, Mahoney M1 Results: From March 2007 till October 2008 47 questionnaire developed to assess bereaved relatives’ 1St Catherine’s Hospice, Education and Training, protocols were returned. In each case the patient’s views about the quality of care for dying patients. Crawley, United Kingdom current state was described by the doctor and the The next-of-kin to 778 patients who had died from conditions for CPS were checked. In 91% of the cancer in a hospice or hospital during a 21 month Background: Suboptimal end-of-life care in care protocols doctors had completed all information and period were identified and asked to complete ECHO-D. homes may result from inadequate training. To informed consent items, including information about Results: Following exclusions (n=53), 255 (35.2%) measure the end-of-life care provided, core ending the supply of artificial fluids. Nurses completed next-of-kin agreed to participate. Participants reported competencies are required which set a minimum the tick boxes on communication about mouth care that fluids were most frequently provided by oral standard against which specific roles are defined. To and the farewell procedure in 53% and 46% of cases, mouth care (51.8%). The use of intravenous fluids was achieve and maintain significant improvements in respectively. In 60% of the cases the Expert team was less frequently reported by hospice participants (13.8%) practice, an in-depth training programme needs to be asked for advice related to the indication for CPS or to compared with hospital participants (32.2%, p=0.001). undertaken and outcomes measured. However, training the sedatives to be used. More hospice participants responded that the method is complex as palliative care derived from a cancer care Conclusion: The Erasmus MC multidisciplinary of providing fluids had been the appropriate way model may not be directly transferrable to those dying protocol CPS was used well. In the returned forms, (hospice 71.6%, hospital 54.9%, p=0.004). in a care home. doctors almost fully completed the indication and Discussions about the appropriateness of giving Aim: To enhance end-of-life care practice in care information items. Nurses’ adherence to the protocol intravenous fluids occurred with similar frequency in homes, through the development of a core competency was smaller. It seems that doctors dealt according the both settings (hospice 26.6%, hospital 26.0%). More framework, supported by a package of education and indications for CPS and seemed to be willing in asking hospital participants indicated that these types of training. advice. This supports the importance of this protocol in discussions would have been useful compared with Method: This collaborative project involves staff from case of CPS. hospice participants (hospice 18.3%, hospital 45.2%, the hospice going into four individual care homes, to p<0.0001). work in partnership with care home staff. Stage 1 will Conclusions: In the hospital setting, there appeared to develop a competency framework specific to each care PE 2.S138 be greater use of intravenous fluids in the last days of home. Focus groups and interviews will elicit life and less satisfaction with the appropriateness of this experiences in practice to then inform the development Hope at the end-of-life: Perceptions of compared with the hospice. More open discussion of competency statements. In stage 2, the competencies Portuguese cancer patients submitted to about the provision and withdrawal of fluids in both of care home staff will be assessed using the framework, palliative chemotherapy healthcare settings is required to ensure optimal patient prior to attending a 5 day education programme. It is comfort. anticipated approximately 120 staff will participate. Querido A1 During stage 3, individual’s competencies will be 1Instituto Politécnico de Leiria, Nursing, Leiria, Portugal reassessed in the clinical setting. As part of this, senior PE 2.S140 care home staff will be trained to assess competency. Hope has been considered one of the essential elements Results: The competency framework will be presented in the way of living of people who suffer from cancer. Does the Liverpool Care of the Dying Pathway including discussion of methods of data collection. At the end-of-life, dealing with a terminal disease, when (LCP) have an impact on the quality of care for Discussion will focus on how education influences the a cure is not possible, hope is fundamental to the way dying patients: The views of bereaved relatives? development of competent practice. An outline for cancer patients live the last period of their lives and stage 3 will be presented including the process of determinant for quality-of-life. Mayland C R1, Williams E M I2, Addington-Hall J3, training required by care home staff to undertake Aim: The main aim of this study was: To explore the Ellershaw J E4 clinical assessments. process of hope for cancer patients The objectives were: 1Marie Curie Palliative Care Institute, Marie Curie Conclusion: It is anticipated that the active Understand how hope is perceived; Identify factors that Hospice, Liverpool, United Kingdom, 2University of participation by care home staff in developing relevant influence hope; identify how hope is expressed. Liverpool, Department of Public Health, Liverpool, core competencies in end-of-life care will improve the Methods: The study was based on a qualitative United Kingdom, 3University of Southampton, School experience for patients. methodology, using “Grounded Theory” , presented of Nursing and Midwifery, Southampton, United and developed by Glaser & Strauss (1967). Kingdom, 4Marie Curie Palliative Care Institute, To gather the data we used semi-structured interviews. Liverpool, United Kingdom PE 2.S142 We used a theoretical sampling according the following criteria: aged over 18; undergoing palliative Aim: To compare bereaved relatives’ views in hospice Community based nurse led palliative care clinics chemotherapy; accepted to participate in the study and and hospital settings about the quality of care for dying agreed to audiotape the interviews. 11 patients were patients and to explore the effect of the Liverpool Care Savage M D1, Westlake-Tritton J1, Guerin C1, Hammond R1, interviewed (6 males, 5 females), aged between 35 and of the Dying Pathway (LCP), within the hospital, on Smith B1 74 years, with a time of diagnosis of cancer between these perceptions. 1Luton Community Services, Cancer and Palliative Care eight months and three years. Method: Evaluating Care & Health Outcomes-for the Services, Luton, United Kingdom The interviews were transcribed and analyzed, using Dying (ECHO-D) is a 94 item postal self-completion three levels of coding, according with “Grounded questionnaire developed to assess bereaved relatives’ Aim: The clinics are multicultural, accessible and for theory” procedures. views about the quality of care for dying patients. patients with a palliative care diagnosis regardless of Results: The process of hope was made up by four The next-of-kin to 778 patients who had died from their disease, whom are either working or remaining themes: The perception of hope as inner force, faith, cancer in a hospice or hospital during a 21 month independent within their own homes but had no choice resisting to be able to achieve objectives and hope period were identified and asked to complete ECHO-D. of support other than home care yet may benefit from objects; Perception of the temporal dimension- time t All hospice patients (n=275) and 267 / 503 hospital earlier identification and sign posting to other services. look towards the future, considered the cycle of life; patients had been cared for on the LCP. Four composite Methods: A mapping of current service provision in Experiences of hope, characterized by thoughts, scales (CARE, COMMUNICATION, SOCIAL AND 2005, identified gaps in support of these patients. A behaviors, emotions and relationships lived during the ENVIRONMENT) were created based on conceptual steering group was formed of key people who were process; and Maintaining hope meaning living one similarity using factor analysis techniques. Additionally, currently providing palliative care plus service users. An day- at the- time, feeling death as a present limit. 7 composite variables were created based on conceptual operating policy was agreed and the clinics were Patients identified factors that enhance hope and also similarity. The ‘Quality of Dying’ (QD) scale commenced as a six month pilot. Patients are referred hope inhibiters. represented the summed total of these scales (range 0- from clinicans working in cancer and other diseases at A model of “Process of maintain hope” were design 100). time of palliative diagnosis for an holistic assessment of based on data analysis. Results: Of 725 eligible, 255 (35.2%) next-of-kin their needs by a specialist palliative care nurse. A new Conclusion: The results, not generalized, enable to agreed to participate. Demographic analysis showed patient appointment is an hour and follow ups are 30 better understand the way patients maintain hope at that patients dying in the hospice were more likely to mins. Following a clinic visit, a communication end-of-life. Suggests an aproach to improve end-of-life be younger, female and have breast cancer. Patients proforma is completed and faxed to the referrer and care near death. cared for on the LCP had a mean age of 74.6 years Primary health care team raising awareness of patients compared with 69.6 years for those who were not. needs. The mean QD score was higher for hospice participants Results: A patient satisfaction questionaire was PE 2.S139 (73.1) as compared with hospital participants (50.4, designed and patients stated that they found the clinic p<0.0001). The range of scores, however, was wide for offered choice and addressed their needs earlier in their Hydration and the dying patient: The views of both groups reflecting a broad spectrum of perceptions disease. Since the start of the clinics in 2006, over 250

sessions bereaved relatives about overall quality of care. Within the hospital, new patients have accessed the service with over 600 higher QD scores were seen for those cared for on the follow up appointments. Clinics are now held Monday Mayland C R1, Williams E M I2, Addington-Hall J3, LCP (mean score 55.3) as compared with those who to Friday in various community locations. Patients re Ellershaw J E1 (Saturday) were not (mean score 44.7, p <0.0001). refer themselves as any new problems arise. As their 1Marie Curie Palliative Care Institute, Liverpool, United Conclusions: Overall, patients being cared for on the disease progresses and they are no longer able to attend Poster Kingdom, 2University of Liverpool, Department of LCP were perceived to have had better quality care in a clinic, home support is then given via the district Public Health, Liverpool, United Kingdom, 3University the hospital than those who were not, although the nurses working in partnership with the aligned of Southampton, School of Nursing and Midwifery, level of this care did not reach the hospice standard. specialist palliative care nurse. Southampton, United Kingdom Conclusions: The Department of Health End of Life Care Pathway (2008) is underpinned by support and Aim: To explore bereaved relatives views about the way information for patients and carers. The clinics enable fluids were provided in the last days of life, the earlier interventions and ongoing support thereby appropriateness of the method of delivery and the ensuring patients choices and preferences are met and amount of information they were given about the use they are more likely to die in their preferred place of of intravenous fluids. care. Method: Using an expert panel review, questions were

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PE 2.S143 PE 2.S145 T0 T14 T28 T42 T56 T70 vas Mean 7,6 4,1 2,9 1,97 2,32 2,21 Living on hold Empirical insights into spiritual care for the dying vas s.d. 1,93 2,77 2,37 1,23 1,54 1,76 Sandgren A1, Thulesius H1, Fridlund B2 zonisamide 65,4 71,5 83,7 106,25 113,5 100,5 1Unit for Research and Development, Kronoberg Roser T1, Hagen T1, Forster C1, Borasio G D1 Dosage mean 2 1 County Council, Växjö, Sweden, School of Health Interdisciplinary Center for Palliative Care, University zonisamide 42,4 38,8 49,5 47,5 58,6 53,2 Sciences, Jönköping University, Jönköping, Sweden of Munich, München, Germany Dosage s.d. Today, more and more people die in their own home, Background: Spiritual Care within Hospice and oxycodon S.R. 52,6 58,3 64,7 77,1 72,8 75,2 which fundamentally affects the home care. The aim of Palliative Care is usually assigned to pastoral care Dosage mean this study was to develop a classic grounded theory of services. There is, however, a lack of empirical data oxycodon S.R. 23,1 22,6 28,9 31,3 28,6 20,2 palliative cancer patients and their relatives receiving describing what pastoral care actually does. Health care Dosage s.d. palliative home care. We analyzed interviews and data providers and religious institutions need realistic data related to the behavior of both patients and relatives. in order to plan, organize and fund spiritual and “Living on hold” emerged as the pattern of behavior pastoral care services. T-test: Differences between T0 vas values and vas value through which the patients and relatives deal with their Methods: Chaplains serving on 8 German palliative of every follow up are explained by casual fluctuations main concern, being put on hold. This involves a break care wards and hospices documented every task with difficulty (improbably). down of normality and much time spent waiting. performed during 30 consecutive days using a one-page Conclusions: Oxycodon S.R. + Zonisamide in Often, this leads to feelings of powerlessness, decreased form. Questions included clinical status of the patient, treatment of cancer pain wasn´t studied yet, this pilot- freedom and loneliness. The theory Living on Hold who initiated the intervention and what was the study shows that the administration of these drugs in involves three modes; Fighting, Adjusting and indication. Pastoral care services were divided in two combination is useful in the control of cancer pain, Surrendering. In the Fighting mode patients and basic categories: with mild and transient side effects, good compliance relatives refuse to be put on hold and are striving to a) guidance and counselling (e.g. exploration of and low dosages of both drugs. renormalize their lives. In the Adjusting mode they are situation, biography or matters of belief, crisis adjusting to a life on hold creating a new normality and intervention, counselling in ethical conflicts, new routines. In the Surrendering mode they are interdisciplinary case discussions) PE 2.S147 releasing control of normality and surrender to a life on b) liturgical and ritual acts (e.g. prayer, blessing, hold in the hands of others. Mode being may change anointment, farewell rites, eucharist). Additional data An experience of Buddhism based palliative care during a trajectory and actual mode being depends on was collected on the time spent in regular team 2: How Buddhism priest see their roles in PCU? many factors such as age, personality, type of cancer meetings, conferences, supervision and religious diagnosis and prognosis, social network, earlier services (e.g. memorial services). Matoba K1, Sakiyama H2, Deguchi T3, Morita T4 experience of crisis, competence of health Results: 250 forms were returned. The mean length of 1Nagaoka Wes Hospital/ Ritsumeikan University, Vihara professionals, and continuity of care. There are also contact was 36 min (range 25-52 min). 60% of contacts Unit/ Research Center for Ars Vivendi, Nagaoka-shi, different triggers that can start a reconciling/re- were with the patient alone (32% with patient and Japan, 2Ritsumeikan University/ University of Surrey, evaluating process leading to a change of mode. This family member, 8% only family). 13% of patients were College of Social Sciences/ Faculty of Health & Mecical means that patients and relatives can either be in the in acutely life-threatening conditions, while 13% were Sciences, Kyoto/ Guildford, Japan, 3Meiji University, same mode or in different modes simultaneously. More described as dying (15%). 8% of visits took place after School of Information and Communication, Tokyo, or less synchronous modes may lead to problems and the patient’s death. 55% of the contacts included ritual Japan, 4Nagaoka Wes Hospital, Vihara Unit, Niigata, conflicts within the family, or with the health acts. Counseling was requested only by patients with a Japan professionals. For example, health professionals that Christian background, but not by members of another gives anticipatory care clash with persons in the or no religious tradition. The data indicate a minimum Introduction: One of the important aspects of Adjusting mode but goes well with persons in the requirement for spiritual care of one Palliative Care must be the issue related to religional Fighting and Surrendering modes. It is therefore hour/patient/week. /spiritual domain. It is well-known that the original important for the health professionals to be aware of Summary: Our data give insights into the actual concepts of the Hospice Movement which has been what mode/modes the patient and the relatives are in, performance of spiritual care by the pastoral care staff, developed into and flourished as “Palliative care” was to be able to meet and communicate at the right levels. including required time and different forms of under the influence of Christianity. However not all intervention. Although the regional population is countries have affinity with Christianity. Vihara was mostly Roman catholic, pastoral care services were also established as a care facility for dying based the PE 2.S144 used by members of other or no religious tradition. Buddhism in 1992. “Vihara”means” The rest place, or stroll for leisure (diversion) “ in Sanskrit. Raising the Bar in generalist palliative care Objective: It aims to analyze how the religion in Japan PE 2.S146 is functioning and What is the role of Bonze Westlake-Tritton J1, Semper S1, Spencer S2, Simpkins C2, (Buddhism priest) in the palliative care unit based Dalton M2, England J1 Oxycodon Slow Release (S.R.) + Zonisamide for Buddhism, especially in the points of a spiritual pain. 1Luton Community Services, Cancer and Palliative Care cancer pain: A randomized, single-blind, Method: Three Focus group was organized from the Services, Luton, United Kingdom, 2Luton Community controlled pilot-study member of The Association of Buddhist Vihara, which Services, District Nursing Services, Luton, United has been working as the voluntary group to help Vihara Kingdom Pinto D1, Bonaccia P1, Marinelli F2 for the daily sertvices and some other seasonal 1Federico II Universitary Hospital, Pain Therapy, Naples, ceremony. Each group consisted of 3 to 4 people who Aim: Raising the Bar was developed from a piece of Italy, 2San Giuliano Hospital, Giugliano, Anesthesia, willing to paticipate the research, and have a talk with a work to standardise care given by generalist palliative Intensive Care Medicine and Pain Therapy, Naples, Italy facilitator in a secure and private room. Semi-structured care providers to ensure best supportive care to all Topics (motive, evaluation, and commitment ) were palliative patients regardless of their disease. Aim: Whereas the estimade made by Surveys, 40-50% produced by the facilitator. In Adidtion, private semi- Methods: A six month District Nurse audit was of cancer patients suffer from neuropatic pain, is useful structured interview was also performed for several undertaken which showed disparity in the number of and frequent antiepileptic subministration like people. palliative care patients and place of death on individual adiuvant in the cancer pain treatment in a politherapy Result and discussion: 11 people participate the district nurses caseloads. A working group was formed with opioids.Subministration of Zonisamide and Focus group in April 2008,and 7 people were which comprised of specialist palliative care providers Oxycodon S.R. in management of cancer pain wasn´t interviewed in June 2008. All conversation was and district nurses who agreed core minimum investigated still. This study end-point was recorded and transcripted. standards of care and support that nursing teams were improvement in pain. As for the answer of the Buddhism priest who was expected to deliver. A generalist palliative care pathway Methods: The study was carried out in the San related to the vihara ward, the difference was seen by was created which supports the patient and families Giuliano hospital, Giugliano, Naples, Italy, starting in years that were actually related. throughout their illness. The responsibilities of october 2007 and lasting until october 2008. Pain It seems that the difference between generations is generalist and specialist palliative care roles were intensity was assessed using NPS score. Patients were related to religious circumstances of present age in clarified. A criteria was agreed for Red, Amber and checked through weekly follow ups for 8 weeks, at every Japan. Especially, it might be hoped that the religionist Green status of patients to aid communication between follow up we learnt vas score and the undesired effects. doesn´t push the religion (Buddhism) out forward but teams. Individual team response was also identified for The exclusion criteria were: vas< 4,0, contraindication attaches importance to relations between the person each level. to sulfonamides, opioids. and the person, and puts out the essence of the religion Results: Gaps in the district nurses capacity have been Statistical analisys was performed by T-test. in recently. identified and funding has been secured for extra staff Results: 32 patients received the study drugs like to provide the agreed pathway and the extra training prescribed. mean age 68,4 male 21. T0 mean vas: 7,6 s.d. required to do this. The process is now being rolled out = 1,93 T0 Mean dosage zonisamide =65,4 mg s.d=42,4 PE 2.S148

across all care settings. An audit of this programme will T0 mean dosage Oxycodon S.R. =52,6 mg s.d. = 23,1. sessions feed into end of life care monitoring. mean vas reduced more 50% of mean vas T0 since T28. Request to turn off life sustaining Left Conclusion: The Department of Heath End of Life Mean daily dosage zonisamide was under 150 mg for all Ventricular Assist Device

Care Pathway (2008) is underpinned by support and the study (range 50-200mg). T28mean vas=2,9; T28 (Saturday) information for patients and carers. This generalist mean vas=2,37. Bharadwaj P1, Yu J1, Hand R1, Simsir S1 pathway ensures consistency and high standards of care 1Cedars-Sinai Medical Center, Los Angeles, United States Poster and helps improve the patient and carers experience and supports the local Primary Care Trust to increase The use of Left Ventricular Assist Device ( LVAD) is the number of home deaths. increasing in patients with congestive heart failure (CHF). Approximately 1000 LVAD´s are placed in the United States of America per year. In the Randomized Evaluation of Mechanical Assistance for the Treatment of Congestive Heart Failure (REMATCH) trial 129 patients were randomly assigned to LVAD or optimal medical therapy. Results showed higher survival in the LVAD arm. One year survival for the LVAD arm was 52%

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 159 Poster sessions (Saturday)

versus 25% for those optimized medically. Method: Six nursing homes in Stockholm participated symptom checklists include items on oral health. Oral Mr A, a 64 year old male patient, had a paracorporeal in the project. An education programme based on the care interventions are seldom documented in the LVAD placed for idiopathic CHF in July 2007 as LCP goals was given to all staff. Further teaching was medical charts. In the present study, an oral destination therapy with the possibility of bridge provided within specific areas in palliative care and examination was performed by a dentist to study the therapy to transplant. He was admitted to the hospital expressed needs identified from the staff. Evaluation of prevalence of dental and oral problems in palliative in August 2008 with worsening CHF which responded documentation was carried out before and with the care (PC) patients. well to the addition of a dobutamine drip for LCP. The project will also be independently evaluated. Methods: This descriptive study recruited 126 cancer ionotropic support. Patient reported progressive and Results: Experience from the implementation process patients with advanced disease from two Norwegian PC severe fatigue and dyspnea not responding to opioids will be reported. This includes strongly expressed needs units. Patients were interviewed, completed the resulting in unacceptable quality of life, and from staff for guidelines, education and support. Edmonton Symptom Assessment Scale (ESAS) and subsequently requested that the LVAD support be Challenges include low staffing levels, lack of underwent a clinical oral examination. discontinued. One of the nurses caring for the patient knowledge and competence in palliative care, resistance Results: Ninety-nine patients (79%) agreed to had religious objections and was allowed to refrain to change, and availability of drugs for symptom participate; 47% males, median age 65 (36-90), median from participating. The patient expressed a fear of control. Lack of physician support and expertise are Karnofsky score: 40 (20-80), 73% with a life expectancy feeling suffocated, and requested that he not be aware important factors as well as communication problems of <3 months. Gastro-intestinal (31%) and lung cancer when the device was turned off. At a time determined due to lack of confidence, differences in attitudes and (19%) were most prevalent. The majority (87%) had by the patient, he was placed on a midazolam drip, beliefs about death and dying and hospitalisation of metastatic disease. Highest ESAS mean scores were: 4.9; titrated up to 12 mg an hour intravenously to ensure dying residents. tiredness, 4.7; xerostomia and 4.4; poor appetite. sedation. Once sedated, the implantable cardioverter Discussion: The implementation of the LCP can Xerostomia was reported by 78% and 70% showed defibrillator was turned off. Per family´s request, prayers increase confidence and competence in caring for the mirror test friction. Clinical oral candidiasis was seen in were conducted at bedside by the patient´s physician. dying but also change attitudes, knowledge and skills 32%, 69% grew more than 9 colonies from mouth Subsequently the dobutamine drip and the LVAD were affecting the care of patients at an earlier stage of swabs on Sabouraud’s agar. Moderate or rich amounts turned off. The patient died peacefully within a minute. disease. of dental plaque were seen in 24%, mean number of His family was at the bedside per his request. diseased teeth was 1.9. One patient had As the use of LVAD increases, palliative care bisphosphonate-associated osteonecrosis of the maxilla. professionals need to familiarize themselves with the PE 2.S151 Few patients used dental prostheses (14%). Mouth pain end of life issues related to the intervention. Quality of was reported by 67% and 56% reported problems with life issues should be re-evaluated on a regular basis and Is what we document the same as what we do? food intake. Overall, 77% said they had received no the option of turning off the device should be Interviewing professional caregivers to analyze information about oral side effects of cancer treatment. presented when placed. current end of life-care practice in a general Conclusion: In a PC population, an oral and dental medical inpatient department examination supplemented by specific questions revealed a high prevalence of problems. Despite the PE 2.S149 Messerli E1, Buekki J1 negative impact on functions, nutritional status and 1Inselspital, University Hospital, General Internal QoL, oral status is not routinely assessed and oral care A national guideline for spiritual care in the Medicine, Palliative Care, Bern, Switzerland protocols seldom exist. Increased awareness and Netherlands assessment of oral problems are necessary for improved Aim: In an academic general medical inpatient unit management and information. Leget C1 with a high death rate, a structured protocol for end of 1Radboud University Medical Centre Nijmegen, 114 - IQ life-care is being implemented, the “Liverpool Care Health Care - Ethics, Nijmegen, Netherlands Pathway” (LCP). Reviews of recently deceased patients’ PE 2.S154 charts, which are evaluated by a central reference Aim: In the Netherlands palliative care is organised by institution, are conducted at baseline and after End-of-life research on patients´ attitudes in eight comprehensive cancer centres (CCC’s) the aim of implementation of the LCP to document any changes Germany: A feasibility study which is to provide cancer patients and their families in care. To adopt this process to the local environment access to comprehensive and high-quality care as close and to assess awareness about end of life-issues, a more Voltz R1, Galushko M1, Walisko-Waniek J1, Pfaff H2, Nauck to home as possible. In January 2006 the CCC´s subjective approach is needed. Therefore, we decided to F3, Radbruch L4, Ostgathe C1 published a book comprising 31 guidelines covering supplement the base review (quantitative 1University Hospital Cologne, Center for Palliative the physical and psychosocial dimension of palliative methodology) with qualitative interviews of the Medicine, Cologne, Germany, 2Center for Health care, including a psychological guideline on ´existenial involved medical and nursing staff. Services Research, Cologne, Germany, 3University crisis´. Still lacking was a guideline for spiritual care. Methods: Qualitative, semi-structured interviews Hospital Göttingen, Department of Palliative Medicine, The aim of this project was to write a national guideline about the perception of current end of life-care practice. Göttingen, Germany, 4University Hospital Aachen, for spiritual care that is recognised as a useful tool for Mixed-method comparison of self-perception Department of Palliative Medicine, Aachen, Germany physicians and nurses from different spiritual and or (interviews) to LCP base review (chart reviews). religious backgrounds. Results: Preliminary analysis of the interviews (n=16) Aims: Studying end-of-life issues in palliative care Methods: In 2006 a small working group was installed demonstrates that professionals are familiar with patients in Germany is still seen with a lot of by Agora, the national platform of national palliative standard palliative procedures. However, marked scepticism. This study reports a) how patients and terminal care. The working group consisted of people differences of nurses’ and physicians’ attitudes exist relatives reacted to a study protocol introducing the form different spiritual backgrounds that play an regarding the diagnosis and onset of the dying process. topic of attitudes towards hastened death within the important role in the Netherlands. During two years While nurses tend to advocate restriction to symptom- first days of admission to a palliative care unit, and b) more than 10 meetings were held in order to develop oriented therapies only earlier in the course of illness, why patients could not be included into the study. the guideline. After one year the board of the book of doctors are more reluctant to label a patient “dying”, Methods: Within a protocol for validation of the the CCC guidlines suggested that the guideline for and are more willing to provide specific disease- German version of the SAHD, patients on palliative care spiritual care should contain a revised version of the modifying interventions. Quantitative base review units in Aachen, Bonn and Cologne were screened for already exisiting guidline ´existential crisis´. After revealed that 40% of patients and relatives were inclusion by the treating physician, and were finally completion of the guidline the text was send out in unaware of the dying process; included into the study by the researcher. Reasons for various rounds to various health care professionals of communication/information issues are often not non-consideration and non-inclusion were different professional backgrounds throughout the documented. documented and analysed. country. Conclusion: In an inpatient unit where dying is Results: Of 124 patients seen, 65 (52%) were not Results: The guideline for spiritual care is ready now common, caregivers are comfortable with delivering considered fit for inclusion due to physical disability and will be launched in the beginning of 2009. It care to the dying. In contrast, views on what constitutes (n=35, 54%), cognitive impairment (n=21, 32%), consists of a three layer approach distinguishing “dying” diverge widely, possibly resulting in a psychological distress (n=19, 30%), communication between reluctance to communicate openly and timely with problems (n=15, 23%), and imminently dying patients (a) general attention to spiritual matters, dying patients and their families. Specific education (n=17, 26%). (b) support during difficult spiritual processes may be needed to bridge this gap. Final data will be Of the remaining 59 patients, 41 patients also could not (c) special interventions in spiritual crises. presented at the EAPC meeting. be interviewed due to refusal to participate (8), rapid Conclusion: A national guidline for spiritual care is an deterioration of physical status (11), psychological important tool for strenghtening the spiritual distress / need for psychological intervention (5), dimension of palliative care. Although a hard job to PE 2.S152 imminent death (4), cognitive impairments (2), and develop such a guideline, it is possible to develop it at others causes (9) (multiple answers possible). the evidence level of expert opinion. Oral health in advanced cancer - A neglected Altogether, only 18 interviews (15 %) were performed. problem? Results from a dentist’s examination On average, 3.8 contacts were required (range 1-14) to establish whether the patient could be included in the PE 2.S150 Wilberg P1, Hjermstad M J2, Ottesen S3, Herlofson B B4 study or not. These patients reported that the 1

sessions Faculty of Dentistry, University of Oslo, Dept. of Oral experience of the study was very positive to them. The implementation of the Liverpool Care Surgery and Oral Medicine, Oslo, Norway, 2The Cancer Conclusion: Reasons for non-inclusion were mainly Pathway, LCP, in Swedish care homes Center, Ulleval University Hospital, Department of due to the clinical status of the patients. We conclude

(Saturday) Palliative Care, Oslo and, Faculty of Medicine, that end-of-life research in Germany is indeed feasible, Windus M-J1, Leveälahti H1, Ekeström M-L1, Fürst C J1 Department of Cancer Research and Molecular but meets recruitment difficulties similar to the Poster 1Stockholms Sjukhem, Stockholm, Sweden Medicine, Trondheim, Norway, 3The Cancer Center, international experience. Ulleval University Hospital, Department of Palliative This study was funded by the German Research Aim: To increase the quality of palliative care in care Care, Oslo and, Faculty of Dentistry, Dept. of oral Foundation (VO 497/4-1). homes using the LCP as a tool for education and surgery and oral medicine, Oslo, Norway, 4Faculty of support in care of the dying patient. Dentistry, University of Oslo, Dept. of Oral Surgery and Background: Good care of the dying should be seen Oral Medicine, Oslo and, Rikshospitalet - The National as the norm and not the exception in our society. The Radium Hospital Montebello, Oslo, Norway LCP is a tool used to transfer the hospice model of care of the dying into other care settings. With the Aims: Up to 70% of cancer patients experience oral increasing number of deaths in care homes problems during the disease trajectory, especially in late considerable internal challenges need to be met. stages of the disease. Few quality of life (QoL) or

160 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

PE 2.S155 quality of life. The experts suggested that in studying care and EAS legalisation in the BeNeLux countries and sense of dignity, respondents’ own idea of what Oregon. A taboo juggle between controlling death and ‘Going for gold’ constitutes dignity for them, is at least as important as disrespecting autonomy also emerges. having one general definition of the concept. Thomas K1 1National GSF Centre, Walsall, United Kingdom PE 2.S159 PE 2.S157 Aims: Evaluating thromboprophylaxis on a palliative 1. To maintain consistency and sustainability of Removing barriers to usage of liverpool care care unit practice of end of life care in care homes through a pathway in acute hospital - A multi-disciplinary development of a rigorous accreditation on process for approach Legault S1, Tierney S2, Tucker T1, Chan R1, Allard P1, care homes (nursing) having completed the Gold Dulmage F2, Babcock K3, Pereira J L1 Standards Framework for Care Homes Training Thomas B M1, Murray C1, Leatherbarrow J1, Littlewood C1 1Bruyere Continuing Care, Palliative Care / Division of Programme. 1St Helens & Knowsley NHS Teaching Hospitals, Palliative Care, University of Ottawa, Ottawa, Canada, 2. To develop a national community of learning in Specialist Palliative Care, Merseyside, United Kingdom 2Bruyere Continuing Care, Palliative Care, Ottawa, sharing worked examples of good practice and creative Canada, 3Bruyere Continuing Care, Pharmacy, Ottawa, initiatives in end of life care in care homes. Background: The Liverpool Care Pathway (LCP)is Canada 3. To provide a means of Quality Improvement, Quality currently recognised nationally and internationally as a Assurance and Quality Recognition for care homes useful tool in end of life care. Patients are being Background: Patients may be admitted to our 36-bed providing end of life care. identified as dying by teams but there remains Palliative Care Unit (PCU) from acute medical and Methods: reluctance to use the Liverpool pathway despite clear surgical units on therapeutic or prophylactic • Development of accreditation process in line with decision making around do not resuscitate cardio- anticoagulation (AC). Our group previously conducted objective internationally recognised accreditation pulmonary resuscitation being made. The Liverpool a retrospective study of the use of low-molecular-weight procedures Care Pathway is audited nationally and a summary of Heparin (LMWH) on our PCU. This and a prospective • Invitation to care homes in Phase 1-3 who have the last audit highlighted that our trust had a LCP usage audit of decisions upon admission regarding LMWH completed GSFCH training programme of 23% for the year. prompted development of an algorithm to guide • Development of accreditation assessment methods ie Method: A base line review this year of hospital deaths anticoagulant use on the PCU. checklist, online After Death Analysis, portfolio and within our trust identified usage of Liverpool Care Algorithm: AC is discontinued in patients with ≤ six independent assessment visit Pathway in 15.8% of patients. A repeat retrospective months life expectancy unless treatment is for • Objective panel and criteria for pass, commend and audit of all patient deaths over a three week period thromboembolic disease (TED) within last six months, beacon awards developed highlighted that a significant number identified as when decision to continue or discontinue is • Feedback from all contributors and care homes actively dying in the case notes in the 48 hours prior to individualized. No prophylactic AC is initiated for involved to Help the Aged and Central Team supporter. death had their DNA-CPR status recorded but no use of patients on the unit. The algorithm allows AC with Results: The GSFCH ‘Going for Gold’ Accreditation LCP. A confidential questionnaire was sent to staff on LMWH in patients with symptomatic TED if the patient process was developed and well evaluated - 42 homes 10 wards asking views as to the perceived barriers to consents. registered for accreditation, 34 passed, 8 deferred. Of implementing the LCP when it was felt that death was Goals: A prospective audit is underway to document the 34, 5 were Beacon, 8 Commended, 21 passed. imminent. the use of AC, including LMWH, as a result of An Award Ceremony was held with presentation of Results: implementation of the algorithm. Deviations will be plaque. • 58% suggesting that senior doctors attitudes are an explored to assess if the guidelines need revision. Data Feedback report was produced and recommendations obstacle for implementing the LCP. collected over six months will be compared to results of integrated for Round 2. • 23% identified the diagnosis of dying our previous audits to evaluate the impact of the Showcased examples of good practice shared with • 10% highlighted a lack of knowledge of use algorithm. The results of the study will be presented. others, staff filmed and DVDs used in training. • 8% other reasons. PS: Prophylactic treatment may be considered in Conclusion: This was a successful pilot accreditation Conclusion: We have incorporated a prompt” Is the patients with temporary immobilization resulting from process and is now fully integrated in the GSFCH patient dying, consider using the LCP” onto our DNA- chemotherapy treatment or surgery (e.g. pinning of Training Programme. CPR record to empower teams to address these barriers. fracture). Further Rounds of GSFCH Accreditation are already Further research is required to identify if this prompt booked and registrations received Benefit of enables higher usage. accreditation being built upon, much media interest PE 2.S160 and recognition of good practice in care homes. Funding: Self funded through the National GSF PE 2.S158 Costs of service provision over the palliative care Centre, (Walsall tPCT) and care homes. Initial trajectory Accreditation Process developed with a grant from De-tabooing - A grounded theory of end-of-life AWM. control Masucci L1, Guerriere D N1, Zagorski B2, Librach L3, Coyte P C1 Thulesius H1, Helgesson G2, Lindblad A2, Sjöstrand M2, 1University of Toronto, Health Policy, Management and PE 2.S156 Lynøe N2 Evaluation, Toronto, Canada, 2Institute for Clinical 1Lund University, Clinical Medicine, Vaxjo, Sweden, Evaluative Sciences, Toronto, Canada, 3Temmy Latner Defining personal dignity at the end-of-life: 2Karolinska Institute, Centre for Bioethics, LIME, Centre for Palliative Care, Toronto, Canada Views from patients and experts Stockholm, Sweden Introduction: There has been a dramatic shift in the Onwuteaka-Philipsen B D1, Pasman H R W1, Rurup M L1 Since the 1960s open awareness of dying have started a provision of palliative care from hospitals to in-home 1VU University Medical Center, Social Medicine, EMGO de-tabooing of end-of-life control (EOLC) in the care. The characterization and magnitude of this Institute, Expertise Center for Palliative Care, western world going in two directions with palliative change in the site of delivery in terms of resource costs Amsterdam, Netherlands care being reversible and euthanasia/assisted suicide remain unknown. This study measured direct costs (EAS) and termination of life support irreversible associated with home-based palliative care, and Background: Maintaining dignity is recognized as an EOLC. specifically, visits by physicians, nurses, and personal aim of palliative care. Dictionaries define dignity as the We analyzed public and physician opinions about EAS support workers as well as ambulatory resource costs. quality of being worthy of esteem or respect. However, in a mail survey to a random population and physician Methods: Study participants were recruited from the there is lack of clarity on the definition of dignity and sample in Sweden 2007. Population response rates Temmy Latner Center for Palliative Care (TLCPC), a on the relation between the concepts of dignity and were 695/1200 (58%) and 890/1200 (74%) among regional palliative care program based in Toronto, quality of life in empirical research on dignity. physicians. We analyzed open-ended responses of 6500 Canada. One hundred and thirty-six palliative patients Aims: Investigating views of patients and experts on words, data from 48 interviews with people from and their family caregivers participated in the study. important elements of the definition of dignity and Sweden, Denmark, the UK and USA, four different Information regarding service use was obtained experts’ view on the relation between dignity and Internet message forums, and literature using classic through structured telephone interviews with family quality of life grounded theory procedures (Glaser). caregivers. Methods: Quantitative framework of this study is the Within the de-tabooing of EOLC we can see a juggle Results: The mean total direct cost of care per patient cohort of people with an advance directive. In the between an old taboo of controlling death and a recent for ambulatory and home-based services was $ 5,055 second measurement round (n=5477, spring of 2007) anathema of disrespecting autonomy. This taboo per month (2006 CDN). The largest component of the written questionnaire included the open-ended juggle explains the current attitude climate in the these costs (74%) was comprised of services provided by question ‘Can you define dignity?’ for a (random) half western world with an obvious de-tabooing in the personal support workers (mean monthly cost =$2,941 of the cohort. Answers of respondents who had an BeNeLux countries and Oregon as seen in their EAS (2006 CDN)). The mean monthly cost of nursing visits illness (n=1192) were analysed. These results, and legalisation. Taboo juggling may start with an instant was $605 (2006 CDN). Ambulatory services, which

results from a literature search, were discussed in an emotional reaction to EOLC. Then a definition consisted of lab and diagnostic tests, hospital sessions expert meeting including physicians (n=4) and ethicists confusion about the type of EOLC being discussed, ie admissions, emergency room visits, and physician (n=3). EAS or termination of life sustaining treatment, or services comprised 6% of total direct monthly costs

Results: Patients often define dignity in a negative palliative sedation. Then a reflection phase of arguing ($243 (2006, CDN)). Physician home visits made up the (Saturday) way: they use situations that would hamper their sense pro and con by exampling, comparing, and by smallest cost component (3%) with $125 month (2006 of dignity in defining dignity, such as becoming conditioning EAS. EAS proponents can be CDN). Variation in the proportion of each direct cost Poster dependent on others for care or loosing mental “hyperautonomists” with body ownership arguments, component over the palliative care trajectory was also capacities. Important elements of the definition of “conditioners” emphasizing safety and legal criteria, assessed. The findings may provide insight into dignity were both being able respect ones self and and situational accepters of EAS. EAS opponents may resource allocation planning within home-based health being respected or taken serious by others. The experts be socionomy defenders, role defenders or risk- care organizations. Specifically, fiscal restrain warrants did acknowledge an important overlap between dignity avoiders. De-tabooing counter arguments are: abuse consideration of program costs (and outcomes) in order and quality of life, but considered that the concept of risk, conditional slipping, procedural failures, needless to inform resource allocation decisions that advance dignity added a sense of urgency; having access to if palliative care / palliative sedation offered, and the efficient, effective and equitable distribution of internet e.g. might improve ones quality of life, but professional role erosion. health care resources. probably does not hamper ones sense of dignity. We thus suggest that de-tabooing of EOLC in the Funded by CIHR/CHSRF Health Services Chair. Conclusions: Dignity can be distinguished from western world explains both the growth of palliative

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 161 Poster sessions (Saturday)

PE 2.S161 PE 2.S163 Materials and methods: Nurses on various wards of our university hospital were provided with a Psychological and psychosocial support for The alternation of need and satisfaction of standardised questionary. The main points were the cancer patients in their last days of life - A health care of terminal patients Kaunas needs for palliative care nursing, the communication literature review University of Medicine between the various team members (e.g. physicians, nurses, social workers, chaplains) and the expectations Popa-Velea O1, Galushko M1, Ostgathe C1, Voltz R1, on Seskevicius A1 for a specialised “palliative care nurse”. behalf of OPCARE9 Collaboration 1Kaunas University of Medicne, Kaunas, Lithuania Results: From the 182 distributed questionaries 87 1University Hospital Cologne, Center of Palliative have been returned so far ( = 48%). The most important Medicine, Cologne, Germany End of life finding has been that the main burden (important Goals: To analyse the alternation of physical, conversations with the patient and the relatives) is Aim: Psychological and psychosocial support (PPS) for psychological and spirituality needs of terminal taken by the nurses. The nurses working at the different cancer patients is consistently reported in literature as patients. wards had very similar feelings regarding the physicians an essential part of palliative care, able to ameliorate Aim: To evaluate the alternation of need and dealing with death and the dying. Often it has been the prognosis of patients and increase substantially satisfaction of health care of terminal patiens. reported that there was a lack of communication their quality of life. Despite of these data, much less is Methods: The research was performed in the way of between the physician and the patient but also between known about the scope and utility of PPS for cancer questionanire based of literature. the physician and the nurses. Importantly, the nurses’ patients in their last days of life, therefore the main The results: It was set, that the main physical stuff tries to support the team members caring for objective of this study, realized on behalf of OPCARE9 symptoms of the patients, who took examination dying patients, but could need some more conversation European collaboration, was to evaluate the number before they died were: pain, poor appetite duering within and with other teams. and content of articles published so far about PPS care eating and dyspnoe. The main psychological problems Conclusion: dedicated specifically to terminal patients. to patients were: taciturnity, anxiety and depression. 1. Nurses are working close to the dying patient and the Methods: Experts in the field of palliative care from The most important spirituality problems were the relatives and are sometimes emotionally overhelmed by Romania and Germany were asked to define PPS care loosesess of essential life point and permanently tiring the situation. for terminal patients in their last days of life. Keywords thoughts about death. 2. There is a strong need to enhance communication provided were used in a search string to identify articles Evaluating the satisfaction of health care of the patients between the various persons/ teams working with relevant to the theme. Databases analyzed were who took examination before they died it was set that dying patients. PsychINFO and Medline. pateints moslty were dissatisfy of their health, 3. Normally, in every hospital are resources and Results: 33 German and 25 Romanian experts opportunity to live as long as they want, abillity to take possibilities which should be used to support the team responded (average response rate = 64%), with sample care by them selfs and changes of life, becauce of working with the dying. comprising physicians(inclusive GPs), psychiatrists, illness. the main reasons of dissatisfy in alive pateints psychologists, social workers, nurses, chaplains and life was changes in their life because of illness, ability to hospice workers. Following keywords provided by carry responsibility and opportunity to live as long as PE 2.S167 them, 120 hits were identified, showing a diverse array they want. of topics, such as adequacy of care, PPS needs, An exploration of the use of a sensory room as a applicability of theoretical models and quality of life. therapeutic environment in providing holistic However, only 8 articles focused on the specific target PE 2.S165 care for people with palliative care needs of the literature review. Conclusion: An extended Delphi round of experts Self-assessment of knowledge, attitudes and Smith L M1 could provide supplementary keywords, which can lead skills on end-of-life care of medical residents in a 1Oxford Radcliffe Hospitals Trust, Sir Michael Sobell in the next step to a refined search strategy and private tertiary hospital House Specialist Palliative Care, Oxford, United identification of other studies dedicated to this topic. So Kingdom far, presented data suggest that there is still a poor Manalo M F C1 coverage of the theme in the present-day literature and 1The Medical City, Cancer Center, Pasig City, This poster presents an initial exploration of developing further research is to be undertaken in this field. Philippines a sensory room as a therapeutic environment in a This study was funded by the EU 7th Framework. specialist palliative unit. Patients and their carers use Introduction: Most medical residents feel the room for receiving massage, aromatherapy and uncomfortable with providing terminal care and reflexology. The room is furnished with equipment PE 2.S162 discussing advance directives with dying patients and which appeals to sight, hearing, touch and olfactory their families. The Palliative Care Unit of the Cancer functioning. Items for tasting can also be provided. Delivering end of life care in the prison setting - Center was recently established and the medical Whilst the literature addresses the use of sensory Adaptation and implementation of the Liverpool residents are only beginning to get exposed to palliative environments for client groups with dementia or Care Pathway for the dying patient (LCP) care principles and concepts as some of them go on learning difficulties, there is comparatively little written rounds and have case management meetings with about using such facilities for people requiring Soden K A1, Hall L1 palliative care specialists. palliative care.
It is suggested that, due to the 1The Priscilla Bacon Centre, Norwich, United Kingdom Aim of investigation: To determine the effectiveness nature of some treatments and health care of mentoring by palliative care specialists in changing environments, people may have had unpleasant Background: England and Wales have the highest medical residents’ attitudes, knowledge and skills sensory experiences. In seeking to achieve active and number of life sentenced prisoners in Europe and the toward end of life care and quality of death in patients. holistic palliative care it is suggested the nature of the number of prisoners aged over 60 has risen 185% in ten Methods: Questionnaires are administered to medical environment may have great significance. years. Our local prison healthcare unit (the only one of residents incorporating self-assessment of knowledge, The sensory room has been developed with the its kind in Europe) provides care for older life sentenced attitudes and skills toward end-of-life care and quality intention of providing a therapeutic environment in prisoners. Patients are often admitted with significant of death of their patients. Analyses would compare which people can use individually tailored sensory palliative care needs due to a life limiting illness from responses of residents who had a hand in managing experiences. The aim is to offer users the opportunity to which they subsequently die. patients of palliative care specialists and those who did enhance their sense of relaxation and well-being, to As part of our specialist palliative care outreach service, not. explore coping mechanisms and to connect with their we have introduced the LCP within the prison unit. The Results: In general, those residents who were exposed inner selves in creative ways. It may also be a means by LCP is a continuous quality improvement framework to palliative care principles and concepts during ward which individuals can divert their mind and energy, for care of the dying - to our knowledge there has been rounds and case management meetings with palliative occupying not just a different space but a different way no published work looking at its use within prisons. care specialists had better scores in their self-assessment of being. Content: The paper describes our experience using the of knowledge, attitudes and skills toward end-of-life Information regarding the experiences and LCP within the prison setting and for prisoners dying care and quality of death of their patients. observations of those people using the room will be in other local healthcare settings. We have worked Conclusions: Ward rounds and case management collected and analysed to reveal the nature of common closely with prison colleagues to adapt the LCP meetings with palliative care specialists may be an themes. Data which reflects the experiences and specifically for use in this setting and are now piloting effective model for training medical residents on end- evaluations of patients, carers and therapists will be it. of-life care and quality of death of terminally-ill triangulated in order to gain a comprehensive view. The areas needing special consideration within the patients. Evaluation will be used to inform and develop the use prison setting are discussed: of the room. - Security issues - commencing a patient on the LCP The study will explore how a sensory room can provide triggers a review of the prisoner’s security status, PE 2.S166 the opportunity for people to enjoy experiences which allowing significant issues to be addressed (including appeal to all five senses in a therapeutic environment, relatives being given access and the cell door being left Palliative care for patients in a university and how this may enhance or, indeed diminish, open, allowing nurses 24 hour free access). hospital - The nurses’ standpoints physical, psychological, social and spiritual well-being.

sessions - Resuscitation - clear processes are in place to ensure the patient’s resuscitation status is addressed at an early Oswald S1, Holderied A2, Wasner M2, Beyer A1, Lorenzl S1 stage. 1LMU Munich, Palliative Medicine, Munich, Germany, PE 2.S168 2

(Saturday) - Piloting the LCP within the prison has highlighted the LMU Munich, Munich, Germany need for easily accessible educational resources. Complementary therapies in german hospices - Poster - Joint working between the specialist palliative care Aim: Although palliative medicine is an emerging new An exploratory study of current practices service and the prison service has led to changes in the discipline, the dying patient still feels sometimes lost in procedures following death. hospitals which provide emergency and high-tech Wenzel C1, Heller A1 Conclusions: The LCP is designed to transfer best medicine. One of the many reasons for it might be the 1Alpen-Adria-Universität Klagenfurt, Faculty of practice for care of the dying in the hospice missing communication strategies between the Interdisciplinary Studies, Dep. of Palliative Care and environment into other care settings. This work different team members working with the dying. Each Organisational Ethics, Vienna, Austria describes its use in one of the most challenging member of the team caring for terminally ill patients healthcare settings and has been highlighted as good has his/her own thoughts and needs. Therefore, caring Aim: Complementary therapies are widely spread in practice within the 2008 End of Life Care Strategy for for the dying challenges the complexities of the entire end-of-life care (Cotton 1999) and though most of England and Wales. team. Interactions and the mutual support are the them are lacking scientific evidence users are reporting basics for an optimal management of these patients. a variety of positive physical, psychosocial and spiritual

162 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) effects. This paper focuses on the dispersal, reasons and PE 2.S170 needed to reduce the amount of factors in order to get a benefits of the use of complementary therapies in successfully and effectively list of factors which can hospice care in Germany and is based on a larger Palliative care at home for the dying: A two years help to identify palliative care patients in general ongoing study on effectivity of complementary experience in communicating with AIDS patients practice. therapies in palliative care. at end of life due to antiretroviral treatment Methods: For this exploratory study qualitative failure in Abidjan, Côte d’Ivoire interviews (n=10) were conducted to gain a deeper PE 2.S172 understanding of current practices with these therapies Ngouolele C M1, Aka J1, Koffi J1 in hospices. The sample included hospice managers 1Ruban Rouge CI, Palliative Care Unit, Abidjan, Cote To die in an internal medicine ward in Sweden and complementary therapists in seven different D`Ivoire today inpatient hospices in Germany. All interviews were tape-recorded, transcribed verbatim and analysed using Aims: The main objective pursued by Ruban Rouge CI- Taranger M1, Börjesson S2 grounded theory methods. an HIV/AIDS organization- when opening the palliative 1Sahlgrenska University Hospital, Internal Medicine; Results: A huge variety of different complementary care unit in December 2005 was to continue providing Östra, Göteborg, Sweden, 2Sahlgrenska University therapies are applied in the included hospices with total care at home (physical, psychological, spiritual) to Hospital, Göteborg, Sweden aromatherapy, reflexology, wet-packs, Shiatsu, the dying AIDS patients who faced treatment failure Craniosacral Osteopathy, art and music therapy among amongst the 2113 persons who were under In internal medicine wards in Sweden today, a common them. Nurses take a leading role in applying antiretroviral treatment at the organisation AIDS clinic group of patients are the elderly with multiple diseases complementary therapies but in no case they were in Abidjan. in the last phase of their lives. Though the medical staff challenging conventional medicine. Especially in Method: The study is a retrospective analysis of daily takes care of dying patients there is a lack of symptom therapy complementary therapies are counselling based interviews carried out by palliative knowledge and routines in basal palliative care. supposed to improve quality at the end of life. care staff with AIDS patients at end of life as well as The Swedish national register of palliation aims to Furthermore these applications are seen as supportive their family members between March 2006 and June improve the care of dying patients. Hospices as well as to professionals as well as patients` relatives by 2008. Interviews covered patients’ emotional, social, home care units and hospital wards are encouraged to intensifying relationships to the dying people and spiritual needs and problems. Patients and family register data concerning all their deaths. particulary through touch and body-work. members interviewed were aged 24 and more. In ward 353 at the Clinic of Internal Medicine, Conclusion: The concept of palliative care, which Touching was also used an interview technique with Sahlgrenska University Hospital 90 patients die addresses mind, body and spirit seems to legitimize patients. In total 81 patients and 50 family members annually. In spring 2007 we decided to join the register health professionals, especially nurses in hospices, to were interviewed. to be able to characterise the quality of our palliative apply complementary modalities to enhance end-of-life Results: Analyses showed that 2 months after they care and improve it just by the process of registering. care. Though there is also a strong conceptual emphasis entered the palliative care program fear was the main During the period 070501-080831 there were 121 cases on interdisciplinary teamwork in hospice care, problem at the patient level. Indeed, of death reported of which 85% were expected. Only 24 complementary therapies do not seem to be part of 1) 84% among them had fears about their family and % of the patients but 80% of their relatives had been that. Further research is needed to uncover the different friend. The feelings they expressed the most were: loss informed that they were dying. facets and prospects of complementary therapies in of family role, being a burden, loss of sexual attraction 17% were not relieved from dyspnoea, 17% not from end-of-life care. or sexual function; pain, 20% not from wheezing, 6% not from nausea and 2) almost half of the patients (39) had fears about dying not 20% from anxiety. because of religious concerns; The number of patients that were prescribed PE 2.S169 3) 40% expressed fears about social status and finances. medication against pain increased from 74% to 100%; On the family ground, the main problems were: against wheezing from 52% to 83%; against nausea An expirience of Buddhism based palliative care 1) lack of experience with death occurring at home, from 10% to 67% and against anxiety from 48% to 92%. 3: Reconsisering the social consiousness of 2) ignorance of legal rights of their dying ones to 40% of the patients died alone - a figure that varied relegion confidentiality and ethical issues related to disclosure from 60% to 27%. 60% died in the absence of relatives without the patient consent. or friends - a figure that varied from 85% to 30% and Sakiyama H1, Deguchi T2, Matoba K3, Morita T4 Conclusion: Given that a growing number of AIDS correlated to the frequency of dying alone. 1Ritsumeikan University/ University of Surrey, College patients under ART in Cote d’Ivoire are faced with A bereavement meeting was offered in 52 % of the cases of Social Sciences/ Faculty of Health & Mecical treatment failure and that second line treatment are not - 22% in the beginning of the study period and 90% in Sciences, Guildford, United Kingdom, 2Meiji University, affordable to most of them, the need for palliative care the end. School of Information and Communication, Tokyo, is increasing within this specific population. Potential The results from 16 months of registration show several Japan, 3Nagaoka West Hospital / Ritsumeikan palliative care providers will need strong counselling areas where the palliative care has to be improved but it University, Vihara Unit/ Research Center for Ars skills to deal with patients’ fears and promote seems that the registration itself had a positive effect on Vivendi, Nagaoka, Japan, 4Nagaoka Wes Hospital, confidentiality within family members. several parameters. As the whole clinic with 158 beds Vihara-Unit, Nagaoka, Japan now register all cases of death it should improve the quality of palliative care for the approximate number of Introduction: Japanese hospices have been PE 2.S171 350 patients that dies at our clinic each year. influenced by Christianity, but it seems that it doesn’t match for Japanese consciousness for death and Factors to identify palliative care patients with religion. malignant and non-malignant disease, results PE 2.S173 Then, we would like reconsider the social from a literature search and expert panel consciousness for death and religion among Japanese meetings Delving deeper - Further analysis of cancer people through the research people related to Nagaoka deaths audit west hospital (vihara ward). Thoonsen B1, Groot M1, Rijswijk E1, Engels Y1, Vissers K1 Objective: It aims to analyze how the religious activity 1UMC St Radboud, Nijmegen, Netherlands Groves K E1, Drijfhout M1, Jack B2, Wiredu E3 on Vihara ward influences among nurses, patients and 1West Lancs, Southport & Formby Palliative Care Buddhism priests themselves. Through it, we describe Palliative care patients are not always recognized as Services, Palliative Medicine, Southport, United not only the meaning of Vihara movement, also the patients who are in need of palliative care. Especially for Kingdom, 2Edge Hill University, Ormskirk, Lancashire, consciousness of death and religion in Japan. patients with Chronic Obstructive Pulmonary Disease United Kingdom, 3Data Solutions Services, Ormskirk, Method: We have been researching the Buddhism (COPD) or with congestive heart failure it is hard to say Lancashire, United Kingdom priests and nurses related to the Vihara ward since when they can benefit from palliative care. For patients May,2008. Semi-structured Topics(caring, death, and not recognized as palliative care patients a plan of Background: Towards the end of 2006 an audit of all religion) were produced. The total amount of action is missing. In literature various approaches are cancer deaths, in all care settings, occurring within the interviewee is 30 persons. More, we plan to research for used to identify patients at the end of life. Studies used West Lancs, Southport & Formby area was undertaken. the survivor of patients in Vihara. Through these we try specified characteristics, survival prediction rules or Preliminary results showed that about 2/3 of those who to find out the relationship of caring between priests, physician judgment. But no literature was found with died had made their wishes about their preferred place nurses, and families and analyze the complex of validated tools which can identify palliative care of care known to health professionals and religious consciousness among them. patients. approximately 3/4 of those chose to be at home. Of the Result and discussion: At first, we find that almost all Aim: The aim of this study was to identify factors 1/4 who chose not to be at home, all got their wish, but of the patients and nurses don’t have the religious which can identify patients with COPD, congestive of the 3/4 who chose to die at home just over 1/2 of viewpoint for caring and death, but it seems that there heart failure and patients with malignant disease, who these achieved it. Significantly, if the carer’s wishes are implicit consciousness for respecting Buddhism. can benefit from palliative care in general practice. were that the patient should not die at home, none did Secondly, priests don’t want to push their religion Methods: A systematic literature search was performed and if the family were undecided only one patient against nurses and patients. Instead, they would like to and expert panel meetings were held to identify factors managed to die at home. tell the patients some dairy episode and event that which can identify palliative care patients with COPD, Method: Although the data was incomplete, it was

contain the religious meaning. Through them, it seems congestive heart failure and patients with malignant important to understand whether there were lessons sessions that patients accept religious meaning of death disease, who can benefit from palliative care in general that could be learnt from the data available. The data indirectly. practice. was analysed using SPSS (data analysis package), to look

Finally, we suggest the social policy that might be Results: In literature we identified 25 possible factors further at reasons for either staying at home or not (Saturday) suitable for Japanese conditions. Needless to say, for identifying palliatieve care patients with COPD, 29 staying at home. Japanese people feel strange for Christianity. However, factors for patients with congestive heart disease and 39 Results: This poster displays the results of the further Poster they also feel discomfort for strict Buddhism. Then, factors with a malignant disease. Expert panels analysis and the contributing factors which were nurses and priests care for the patients without using identified a list of 34 possible factors for identifying discovered to be important in achieving expressed end religious meaning directly. We insist that social policy palliative care patients with COPD, 14 factors for of life wishes. must consider such a complex, implicit social patients with congestive heart failure and 12 factors for consciousness for religion and death. patients with a malignant disease. Conclusion: A lot of different possible factors were found to identify patients with malignant and non- malignant disease, who can benefit from palliative care in general practice. The amount of factors is possibly not effective to use in general practice. More research is

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 163 Poster sessions (Saturday)

PE 2.S174 individual factors, but the high percentage of anti- PE 2.S178 tumour treatment even during the last two weeks of life Quality assessment of I.S.T. Home Care Program might initiate a more intense debate on goals and cost- Nationwide and graded hospice and palliative benefit analysis within our centre. care in Austria - Dream or reality? Luzzani M1, Capitani M2, Di Leo S2, Morasso G2 1Istituto Nazionale per la Ricerca sul Cancro, S.C. Pelttari-Stachl L1, Zottele P1 Terapia Antalgica e Riabilitazione, Genova, Italy, PE 2.S176 1Hospiz Österreich, Dachverband von Palliativ- und 2Istituto Nazionale per la Ricerca sul Cancro, S.S. Hospizeinrichtungen, Wien, Austria Psicologia, Genova, Italy Non-governmental organizations´ contribution to end of life care in Argentina This research aimed at clarifying the necessary Aims: Our research is intended:1) to evaluate patients measures to implement nationwide hospice and (pts.) and their caregivers’ careg.)satisfaction in I.S.T. Daud M L1, Jorge M1, Dulitzky S1, Maceira S1, Grance G1, palliative care in Austria until 2012. Further the Home Care Program (HCP); 2) to detect needs of pts. Tripodoro V1, Berenguer C1, Garrigue N1, D’Urbano E1, De research aimed at visualizing the work of voluntary and and their careg. communication and information. Simone G1 salaried personnel. Methods and patients: In this research had been 1Pallium Latinoamerica, Buenos Aires, Argentina In order to achieve these aims it was necessary to survey included all advanced cancer pts. with a life the current status of hospice and palliative care in expectation beyond 1 month, followed in home care Since first initiatives in the early 80’s, Palliative Austria. As a further stage the statistical data was for more than 15 days at least. Both pts.and careg. had Care(PC) in Argentina has been significantly developed. compared to the recommended data of demand of been interviewed once by an external team of Despite of this, PC services remain insufficient. ÖBIG (Austrian Health Institute). The theoretical level psychologists separately. Careg. had beeen interviewed Financial constrains, inequality in access and of nationwide hospice and palliative care was then once more.The eligible pts. were 21, whose 12 accepted distribution of health resources, lack of proper health compared to regional reality and daily experience. The to be interviewed, 2 turned out, 7 have been excluded policies and strategies, and poor governmental support, collected data was written into the SQL database of because their clinical conditions got worse. 19 Careg. are key hindrances to its growing. The national health Hospice Austria and analysed. The data collection was accepted to be interviewed for the first time.Thesecond system provides 100% free care and medication to carried out by the structure of Hospice Austria. interview was possible for 9 careg. hospital inpatients, with rare or no follow-up or The outcome shows the necessity of considering Results: medicines provision for chronically ill or dying patients regional conditions. Demand and level of nationwide A) Patients: most of the pts. learnt the I.S.T. HCP at home. There are no general practitioners, the care mainly correspond regarding palliative care units, during their stay at hospital or during follow up visits. nurses/doctors ratio is extremely low and trained PC especially in metropolitan areas. The demand for 9 pts. out of 12 considered good the level of professionals are still scarce. Nevertheless, non- inpatient hospices is high. The perception of demand information, staff’s kindness and ongoing care governmental organizations(NGO) and few private for day hospices varies greatly. Calculations of demand between hospital and home.The quality of institutions have played a seminal role in PC delivery, and nationwide care for mobile palliative care teams are information concerning disease and staff willingness intending to fill in the existing gap regarding home widely accepted. The primary basis for calculations is were considered good. A third of pts. obtained a partial care. This study aimed to describe where patients human resources (4,5 full time equivalents per 140.000 response by the pain therapy; while those who referred assisted by a NGO home care team died; analyze factors residents) and secondly the amount of teams. other symptoms obtained a good response. On the that may have influenced the place of death; and Hospice Austria and the federal states coordination whole HCP was judged good for 8 pts. and very good determine utilized resources during the assistance. organizations regard a nationwide implementation for 3 pts. Overall aim: show the impact of a NGO program in care realistic if there is enough political will at federal and B) Caregivers: They consider good the level and at the end of life. Information was retrieved through state level. This means a good coordination of funding comprehension of information and staffs’ attitude too. retrospective review of medical records of cancer responsibilities between the ministry of health, the In addition to the I.S.T. HCP 16 out of 19 needed patients who had been admitted to a NGO home care ministry of social affairs, and social insurance private and integrated assistance. Our Program was program and died, within a period of 12 months. institutions, which in turn would lead to generally evaluated positively, they appreciated the staff´s Records were excluded due to missing information. applicable rules of financing and the inclusion of all competence and willingness. They would like to Data from 76 adult cancer patients have been analyzed. hospice and palliative care services into the standard benefit of much time of home care, more information 66 Patients (87%) died at home. Features such as type of care of the Austrian health care system. and economical aids. tumor, time between admission to the program and Conclusions: Both pts. and careg. claimed for a death, place of residence and family support deeper knowledge concerning disease and socio- demonstrated to be associated with the place of death. PE 2.S179 sanitary aspects. We drew up an informative booklet of PC professionals involved and other required resources practical use about the Palliative Care Regional were enumerated. This study showed the impact of The effect of the palliative care team on quality Services. NGO commitment and participation in PC, improving indicators for end-of-life care in the Intensive This Research has been carried out thanks to a grant of quality of care of patients and families at the end of life, care unit: a randomised, controlled study the Italian Health Ministery. through the optimization of low resources and a specialized PC team. Cheung W1, Aggarwal G2, Fugaccia E1, Thanakrishnan G1, Milliss D1, Anderson R1, Fryc A1, Stock D1, Bird H1, Tan J1 PE 2.S175 1Concord Repatriation General Hospital, Department of PE 2.S177 Intensive Care, Concord, Australia, 2Concord Hospital, Patterns of care in the last 4 weeks of life in Department of Palliative Care, Concord, Australia patients with solid tumours at a Swiss cancer Geriatric hospice - Eight years experiences of centre home hospice for adult in Pozna?/ Poland Many problems exist in managing patients at the end- of-life in the intensive care unit (ICU) and involve a Sauer A1, Schlaeppi M2, Thürlimann B2, Eychmueller S3 Jakrzewska-Sawinska A1, Sawinski K1 complex interplay between the patient, their families, 1Cantonal Hospital St. Gallen, Department of Internal 1Wswop Hospicjum Domowe, Pozna?, Poland technology, and the treating medical teams. The act of Medicine, St. Gallen, Switzerland, 2Cantonal Hospital end-of-life decision making can be difficult and St. Gallen, Dep. of Oncology, St. Gallen, Switzerland, At present, all societies are dealing with an increase of practices can vary widely. 3Cantonal Hospital, Centre for Palliative Care, St. the number of elderly people which needs or will be We conducted a single centre, unblinded, prospective, Gallen, Switzerland needs a paliative care in endstage of their live. In this randomised controlled trial, at the Concord paper we present our exeperiences in paliative care for Repatriation General Hospital, Intensive Care Unit, Rational: There is no gold standard for interventions patients over 65 years without neoplastic diseases. The Sydney, Australia, with Ethics approval. in cancer patients closed to death, but some indicators home hospice care we realise by multidisciplinary team The priori hypothesis was Palliative Care teams improve for “non- quality” are stated in the recent literature. consists from medical specjalists - for paliative, geriatric, patient, family, and staff satisfaction with end-of-life According to an American expert panel, indicators for internal medicin, hematology, neurology, surgery, care in ICU. low quality of life in the last weeks of life seem to be: nephrology, diabetology, cardiology, anesthesiology, Patients who had begun end-of-life care in the ICU were start of new chemotherapy in the last 30 days, dermatology and nurses prepared for palliative care. randomised into two groups. continuation of chemotherapy in the last 2 weeks, They were supported by psychologists, physiotherapists, Control Group: received normal ICU end-of-life care, more than 1 hospitalisation and stay at ICU in the last social workers, priests and group of volunteers trained including preparation of the patient, family, and staff, month. The debate on “futile treatment” and for hospice care. During nine years, we provided the symptom management, withdrawal of treatment, and “medicalisation of dying” is ongoing, and cost - benefit care for nearly 2000 persons. In this group, 70,0 % of communication. evaluations are rare for this phase of life. patients were with non-neoplastic diseases (female - Intervention Group: received normal ICU end-of-life Methods: A retrospective, electronic chart review of all 56,8%, male - 43,2%; mean age: 78 ys., range: 65-102 care, and in addition, involvement from a palliative patients with diagnosis from cancer (solid tumours) ys.). There were patients with painful and large care team. who died from 2004 - 2006 was performed at our bedsores - 64%, arteriosclerosis - 33%, Alzheimer We looked at the effect of the palliative care team on hospital. Each chart was screened in regard of the disease - 16,5%, diabetes - 15,5%, senile demention - three groups: patient and their families, nursing staff, indicators mentioned above (inpatient and outpatient). 14,5%, Parkinson disese - 10,7%, cerebral stroke - 8,7%. and medical staff via questionnaires.

sessions In addition, radiotherapy, major surgical interventions The most medical problems were: urine and feces The primary outcomes were: and blood product- transfusions in the last 4 weeks incontinence, bedsores, dehydratation, general (1) overall patient/family satisfaction with ICU were analysed. devastation and pain. The mean time of care was 5,8 treatment.

(Saturday) Results: 521 patient charts were analysed, drop out due months, but about 18% of patients needed over 1 years (2) continuity of care, emotional support, symptom to missing data n= 27. In the remaining 494 patients care. This work indicate that older people with non- management, and spiritual support. Poster most frequent diagnosis was lung cancer (23%), neoplastic disorders need the same care similar to the (3) staff satisfaction with ICU. followed by upper GI (20%). New anti-tumour young patients with neoplasa. During nine years our (4) Length of ICU stay. (5)Length of hospital stay. treatment 4 weeks prior to death was initiated in 30% Home Hospice for Adult constructed an effective model Secondary Outcomes were: As listed under the end-of- (n=148, chemotherapy 13%, radiotherapy 8%, major of palliative for elder people based on two criteria: life care domains such as symptoms (eg. pain, surgery 13%), and 31% received such treatment even in complexity and accessibility. dyspnoea), and communication quality. the last 2 weeks of life (chemotherapy 15%). Blood These outcomes were based on quality indicators for products were given in 50% of patients during the last 4 end-of-life care, by The Robert Wood Johnson weeks, with 23% during the last week of life. 15% had Foundation Critical Care End-of-Life Working Group ICU admission during the last 4 weeks. that identified seven key domains. Conclusion: Stating quality indicators for best end- of- This study has been completed in October 2008 with 20 life cancer care may be very much dependent on patients recruited. The study further highlighted the

164 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) difficulties in recruitment in ICU. Statistical analysis of approach to explore the onset of breathlessness, the PE 2.S186 the study is underway and these results will be underlying aetiologies and subsequent health service presented and discussed during this presentation. utilisation. Hospitalizations in a palliative care unit (PCU) in Argentina

PE 2.S180 PE 2.S184 Ponte Y1, Vignaroli E1, Rey V1, Mammana G1, Bertolino M1, Wenk R1 MRSA in the palliative care unit: An increasing Future projections of population and mortality 1Programa Argentino de Medicina Paliativa. Fundación problem? to 2030 in Germany - And their impact for end- FEMEBA-Hospital Tornú, Ciudad de Buenos Aires, of-life care Argentina Gleeson A B1, Floyd S2, O’Siorain L2 1Our Lady’s Hospice, Education and Research Centre, Simon S1, Gomes B2, Higginson I J2, Bausewein C2 Introduction: Only a very small number of inpatient Dublin, Ireland, 2Our Lady’s Hospice, Dublin, Ireland 1Institute of Palliative Care (IPAC), Oldenburg, palliative care units are available in Argentina. The Germany, 2King’s College London, School of Medicine, Hospital Tornú-Fundación FEMEBA PCU aims to offer Aims: The aims of this study were threefold. Firstly, as Department of Palliative Care, Policy and specialized interdisciplinary assistance to patients and this is a follow up study, we wanted to determine if there Rehabilitation, London, United Kingdom their families who have high level symptom and had been an improvement in clinical practice in relation psychosocial distress due to advanced illness that to screening for MRSA. Secondly, we wanted to determine Background: The world population is aging and this threatened their lives. the prevalence of MRSA in all patients admitted to the applies in particular to developed countries such as Objective: To describe the characteristics of patients palliative care unit, and thirdly to determine to what Germany. admitted to an inpatient PCU. extent the screening identified new MRSA cases. Aim: To analyse future population and mortality Methods: Retrospective data reviewed from clinical Methods: A retrospective chart review of all patients projections in Germany to 2030 and discuss the impact charts of patients admitted to a 4 bed inpatient PCU admitted to the 36 bed palliative care unit over a four for end-of-life care. during 2007. Demographic data, type of disease, reason month period was undertaken. All patients were screened Method: Secondary analysis of official national for admission, discharged destination and length of for MRSA within 48hrs of admission. Prevalence of MRSA statistics data regarding population, births, deaths and stay were collected. colonisation, site of colonisation and clinically significant places of death. Future scenarios for hospital deaths Results: 75 admissions corresponding to 68 patients infection were documented. All referral forms, available were modelled using recent ten-year trends in age and were collected. Mean age was 60 years old (range 20- MRSA screening results, and documentation (for patients gender specific proportions to estimate numbers of 92). The main cancer diagnosis were gastrointestinal transferred from hospital) were reviewed on each patient hospital deaths to 2030. 40%, lung 12%, urinary 12%, breast 9% and prostate to determine whether they were already known to be Results: Future projections of population estimate a 7%. Median length of stay was 11 days (range 1-137). MRSA positive before admission. Results were compared 6.1% decrease in Germany (82.2/77.2 Million in 67% patients died hospitalized and 27% were with results from the previous audit. 2007/2030) with a fast aging population at the same discharged home. The main reasons for admission were Results: There were 133 admissions within this period, time. The population at working age is diminishing, delirium 31% (23/75), infections 29% (22/75), family 66% (84) of these were admissions from home. The because of a low birth rate (since the early 1970s). Life distress 29% (22/75), pain 19% (14/75), and dyspnea prevalence and incidence rate of MRSA colonisation was expectancy is still increasing (+7 years). However, the 12%(9/75). No reason for admission available in 29% 14% and 3.9% respectively. Two further patients (1.6%) numbers of deaths started to rise in 2006 and will (22/75). Performance status on admission was 3-4 in became colonised with MRSA in additional sites during increase to 1.001.000 deaths in 2030 (+21.8% compared 88%. their admission. Screening data was available for 74.8% of to 2006), because the ‘baby-boomer’ generation from Discussion: The most frequent cancer diagnosis admissions as compared with 22.7% in the previous the 1960s is coming into age. By 2030, the dying in admitted to the inpatient PCU was gastrointestinal, study. Germany will be much older in comparison with today. generally with colostomies, bad general condition, and Conclusion: MRSA remains prevalent in this palliative If the proportion of hospital deaths continues to be difficulties with oral intake. This was probably why care unit but practive in relation to MRSA screening has 47% of total deaths in Germany, the absolute number delirium and infections were the main reason of improved since the previous study. Further research is of deaths in hospitals will increase from 393.715 (2005) admission. This generates more caregiver burden and underway to explore the impact of MRSA in the palliative to 468.000 (2030). Data about place of death in distress, with longer stays, and difficulties to discharge care setting. Germany other than hospital are lacking. home, as there was no home care available in the This study was not funded. Conclusion: Germany is facing major challenges with argentinian public health system. increasing numbers of deaths and aging populations. There is an urgent need for planning care to PE 2.S183 accommodate growing end-of-life care needs. Although PE 2.S187 these changes were felt sooner and to a greater extent Can randomised whole population surveys compared to other countries (e.g. UK), a national Cornea donation from a palliative ward better estimate rates of chronic breathlessness in strategy for end of life care is still missing. the adult population? Weber M1, Braun J1, Siepmann U1, Laufenberg-Feldmann R2, Rolke R3, Vetter J4 Currow D C1, Plummer J L2, Crockett A3, Abernethy A P4 PE 2.S185 1University Hospital Mainz, Palliative Care Unit, 1Flinders University, Department of Palliative & Mainz, Germany, 2University Hospital Mainz, Supportive Services, Adelaide, Australia, 2Flinders Interval between cancer diagnosis, first Anaesthesiology, Mainz, Germany, 3University Medical Centre, Department of Anaesthesia and Pain palliative care consult and death in a palliative Hospital Mainz, Neurology, Mainz, Germany, Management, Adelaide, Australia, 3University of care unit in Argentina 4University Hospital Mainz, Ophtalmology, Mainz, Adelaide, Discipline of General Practice, Adelaide, Germany Australia, 4Duke University Medical Center, Rey V1, Vignaroli E1, Bertolino M1, Sofia B1, Wenk R1 Department of Medicine, North Carolina, United 1Programa Argentino de Medicina Paliativa. Fundación Aims: Contrary to most human organs the cornea can States FEMEBA-Hospital Tornú, Ciudad de Buenos Aires, be harvested for transplantation up to 72 h after Argentina death. Furthermore, cancer (with exception of Introduction: Given the progress in the symptomatic haemoblastosis) is not considered as contraindication. treatment of breathlessness, estimates of the size of the Introduction: Most referrals to palliative care (PC) Studies of hospices in Great Britain indicate that target population who may benefit from better services occur late in the disease process. Much corneal donation is generally regarded positively by palliation become imperative. To date, prevalence information about this topic is available in the donor family members. The goal of this study was to estimates have varied widely (0.9% of clinical literature, but there is no data from this issue in investigate the ability to obtain consent for cornea encounters to 27% of the broader population) and Argentina. donation in a palliative care ward in Germany. been limited by reliance on respondents who used Objective: To determine the interval between Cancer Methods: Over a period of 6 months patients clinical services. Whole-of-population approaches may Diagnosis (CD), first PC Consult (PCC), and Death (D) admitted to the palliative care ward were first assessed be able to better define the ‘true’ prevalence of chronic in a Palliative Care Unit in Argentina. on exclusion criteria for cornea donation. Depending breathlessness and help quantify associated functional Methods: Retrospective charts reviewed of 194 on the patient’s ability to give informed consent the impairment. The aim of this study was to determine consecutive deaths during 2007. Information about patient or his relatives were then approached and whether a whole-of-population randomized survey demographics, date of cancer diagnosis and date of first asked for consent to cornea donation. Patients or could help to estimate chronic breathlessness. palliative care consult and death, were collected. relatives were only approached if - by judgment of the Methods: A whole-of-population random survey Results: 108 (56%) patients were male. Mean age was responsible physicians - the question for cornea method (n = 4366) in South Australia was used, 64 years old (range 32-92). The main cancer diagnosis donation would not represent an undue stress for standardized for age, gender, country of birth and were lung 27%, gastrointestinal 26%, breast 11%, them. The screening process and results were rurality. Respondents were asked about breathlessness urinary 6%, and prostate 5%. Only 7 patients had no documented on a flow-sheet. and limits to daily function affecting them for at least cancer diagnosis. Median survival from diagnosis was Results: From a total of 92 patients the screening three of the last six months using a modified Medical 263 days (range 5-4590 days).Median interval between process was documented in 86. 12 pts (14%) had

Research Council dyspnea scale. Descriptive data with CD and PCC was 133 days, and interval between PCC-D exclusion criteria for cornea donation. From the 74 sessions univariate and multivariate analyses identify the was 45 days (range 0-1482 days). remaining , 58 (78%) were regarded to be able to demographic characteristics of people more likely to Discussion: In this study most of the patients had provide informed consent. 6 patients were asked for

experience chronic breathlessness. advanced cancer at the time of diagnosis. Referral to the cornea donation; 5 agreed. From the remaining 52 (Saturday) Results: With a participation rate of 66%, 2.2% of palliative care consultation was in the middle of the patients 33 passed away on the palliative care ward. In respondents have breathlessness that is likely to trajectory of the disease. This data correlates with 14 of them the family members were asked to give Poster interfere markedly with day-to-day activities. international publications. Future research will be consent after death; 2 agreed. Form the 16 patients Significant associations with chronic breathlessness in necessary to assess if the PCC was mainly related with (22%) unable to give informed consent 4 out of 6 multivariate analysis (correctly classifying 68% of the prognosis or with the de intensity of distress. approached families agreed. Thus, of the 74 eligible population) include being female (p<0.001), not Continuing education in the community and in the donors or families of eligible donors, a total of 26 working fulltime (p<0.001), not being married health care team will enhance earlier access to palliative (35%) were asked to give consent, resulting in a rate of (p=0.011) and having a lower final educational level care. 11/26 (42%) agreeing to cornea donation (12% of the (p=0.016). total of 92 patients admitted). Conclusion: There is a significant burden of ongoing Conclusion: The particular stress situation of breathlessness in the community. Given the patients and their families on a palliative ward prevalence, it is feasible now to use a population requires great sensitivity when asking for cornea

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 165 Poster sessions (Saturday)

donation. However a substantial number of those writing the program of selection of prisoners and This encompasses communication and decision patients or families approached are willing to donate. guidelines for hospices to allow the voluntary activities making processes that give frail elderly a chance to be and nurse aid training. If the program will be successful heard and understood irrespective of their gender. On it will be implemented in more palliative care units in the structural level Gender Mainstreaming can be a PE 2.S188 Poland. It might be another method of improving the helpful tool for taking the ethical dimensions quality of care and breaking various stereotypes in the concerning gender within long-term care into Structured ethics consultation in a university society. consideration. hospital - First data

Strohscheer I1, Kunz M1, Tritthart H1, Pieringer W1 PE 2.S190 PE 2.S192 1Medical University Graz, Graz, Austria In seeking the miracle cure, or the use of Representations of end-of -life, palliative care The existence of ethics committees providing education alternative treatment modalities amongst cancer and of withholding and withdrawal of life in medical ethics, development of guidelines and patients in Bulgaria support in intensive care units: Interest of performing ethics consultations is not common in collaboration with a mobile palliative care team German speaking University Hospitals. The task of an Yordanov N R1, Stefanov R P2 ethic consultation is to identify and analyze a conflict 1Interregional Cancer Hospital, Palliative Care, Vratsa, Burucoa B1, Paternostre B1 of values and facilitate a consensus for the best possible Bulgaria, 2Interregional Cancer Hospital, 1University Hospital, Bordeaux, France solution. Gastroenterology, Vratsa, Bulgaria In this retrospective study, the documentation of the Aims: The death rate during intensive care unit (ICU) is structured ethics consultations in the first thirty There is growing popularity amongst cancer patients to high (20% of admitted patients). 50% of deaths happen months after implementation at a University Hospital, use alternative treatments. Often the patients are after medical decision-making. In France, the 22nd were analysed. A team of at least two persons from the fascinated by the advertisements or deceived by April 2005 law gives legal references which complete ethics committee had done each consultation. Without unscrupulous tradesmen. These alternative treatment recommendations of scientist societies such as SRLF extraordinary activities, the ethics consultation team modalities often lack of evidences for their (Société de Réanimation de Langue Française). The aim was well accepted by the medical staff and other care effectiveness. In Bulgaria these kinds of treatment of this study is to have a better knowledge of the giver. Forty one consultations were performed, 29 (70,7 usually are not ordered by the oncologists. Even more, representations of the caregivers from different %) of them on intensive care units. One third of all often the alternative treatment is performed by the professions all working in ICU. consultations were characterized by complex situations patient itself without consulting with the responsible Methods: Eleven semi-directive interviews were (e.g. medical decisions, communications difficulties) oncologist. performed with different caregivers (physicians, nurses, without a clear ethical question. Thirty four (82,9%) In the investigation were asked 200 patients about their care assistants, healthcare executives, physical patients were not able to give informed consent. More use of alternative treatments. The ways patients gather therapists and social worker). The results were than two third of the consultations (n=28) were the necessary information are described. The patients examined through a theoretical angle of social requested for in end-of-life-situations. were separated by gender, age, religiousness, education representations, complexity and of the “outside Despite the fact that a University hospital treats the and place of living. The preferred alternative treatments partner”. most complicated courses of diseases, most of the are listed. Results: ICU caregivers have different attitudes requests were for questions in end-of-life-care. This is in Although 97% of the interviewed patients declared trust according to their professions, which are marked by contrast to other findings. Also all consultations in official medicine 6% of them searched help in their heterogeneous personal experiences of end-of-life. without any clear ethical questions were performed in alternative medicine before starting the anticancer Their knowledge about palliative care and official texts end-of-life-situations. Obviously medical staff treatment. 47% of the patients have concomitantly about withholding and withdrawal of life support are associated ethical questions at the end of life, perhaps used alternative treatments. 50% of the patients have poor. A confusion exists about the definition of because of the emotional burden and the documented used alternative treatments in the periods between euthanasia. Clinical and therapeutic difficulties, inability of the patients to give informed consent. The active anticancer treatments.11% of the patients asked organisational difficulties and difficulties linked with need for communication in this situation is high and their oncologist before starting the alternative therapy accompaniment are among the most noticeable ones. consultation teams can ease the communication. The and 46% did not. 57% of the patients who have used They don’t know palliative care and mobile palliative overlap of palliative care and ethics consultation is well alternative treatments did not inform their oncologist care team (MPCT) enough. Add to this the problem of known. Particularly regarding this fact it is necessary to because of different reasons. 60% of the interviewed written traceability. clarify the tasks. stated that they would like more information about the Discussion and conclusions: These situations In the future we expect a shift to other prospective different alternative treatment modalities. 98% of the include characteristics of “complex situations”. The consultations for clinical decision making including interviewed stated that their oncologist had never theory of complexity, by Edgar Morin, gives us a clue questions of resource allocation. suggested alternative treatments Cancer patients tend to about the method to resolve these situations. The use alternative treatments in hunting of the miracle MPCT can play the part of a “reflexive third” in cure. They prefer to get the needed information from collaboration with the ICU teams. The written process PE 2.S189 their oncologist. The lack of evidence based is an important component of articulation with the information about the effectiveness of the different speaking process. Recommendations are suggested to Re-socialization of prisoners in hospice? alternative treatment modalities, force patients to trust develop the palliative approach in ICU and the Opportunities and barriers in the light of the the pseudo-medical commercial newspapers offering mediator capacities of the MPCT in complex situations. research made in 15 correctional and palliative miracles in every issue. Collaboration between a ICU team and a MPCT seems care units in Poland useful for complex situations and depend on good mutual knowledge. Krakowiak P1, Modlinska A2, Olszewska A3 PE 2.S191 1Hospice Foundation Poland, Gdansk, Poland, 2Zaklad Medycyny Paliatywnej Akademii Medycznej w Gender: Ethical issues in long-term care PE 2.S193 Gdansku, AMG, Gdansk, Poland, 3Klinika Neurologii Rozwojowej, AMG, Gdansk, Poland Reitinger E1, Lehner E1 ‘Vulnerability’ in cancer and palliative care 1University of Klagenfurt, IFF - Palliative Care and research: Findings from a qualitative study of Aim: From 2003 in Gdansk, prisoners, towards the end Organizational Ethics, Vienna, Austria Black Caribbean and White British patients with of their re-education process, have worked in the advanced cancer palliative care unit. They become part of the Aim: Ethical issues in end-of-life care decisions within interdisciplinary team, collaborating successfully in the long-term care are gainig importance. Gender relations Koffman J1, Morgan M2, Edmonds P1, Speck P1, Higginson I caring team (Krakowiak P, Volunteers dedicated to the on structural, interactional and personal levels play an J1 care of sick elderly people, Dolentium Hominum essential role in the decision making processes 1King’s College London, Department of Palliative Care, 1/2008). Hospice Information Bulletin commented: regarding ethical questions. The aim of the study is to Policy and Rehabilitation, London, United Kingdom, “Prisoners in a hospice? Why not? An innovative show in what situations and ways gender affects ethical 2King’s College London, Department of Public Health program to reintegrate prisoners into society through issues within the care for frail elderly in nursing homes. Sciences, London, United Kingdom voluntary work has proved useful at Gdansk Hospice” Methods: Working within the qualitative paradigm, (Sentenced to care, November 2007). More than 400 situations and examples of ethical questions have been Aim: Vulnerability is a poorly understood concept in prisoners have worked as volunteers in hospice, and elaborated together with interdisciplinary care teams. research ethics often aligned to autonomy, consent and more than 40 finished the nurse aid training working These different situations have been analysed from a clinical research, rather than other research approaches among terminally ill. gender perspective. Themes and roles within the and contexts which may raise different issues. This Methods: Based on the five-year long experience of narratives have been identified. Sociogrammes helped study therefore examines issues of vulnerability in positive collaboration, the national pilot program has to demonstrate the different relations within the care cancer and palliative care research obtained through in- been proposed. WHAT: Work in Hospice as a tool of arrangements. depth qualitative interviews.

sessions Acceptance and reciprocal Tolerance, with 15 hospices Results: Looking at experiences with ethical issues in Method: Secondary analysis of in-depth qualitative and semi-open correctional facilities have started in long-term care we can see the significance of asking interviews among 26 Black Caribbean and 19 White 2008 with the patronage of Ministry of Justice of gender related questions. The situations we have British patients with advanced cancer living in south

(Saturday) Poland. This program gives a chance for carefully analysed showed “autonomy” and “desire for east London. Patients were recruited from in-patient selected and prepared prisoners, teaching them a new relationship” as crucial themes at the personal level of and community-based palliative care teams in addition Poster profession of nurse aid helping the terminally ill the frail elderly. Gender effects can be described as to out-patient oncology and lung clinics. Interview (Krakowiak P., Podr?cznik koordynatora wolontariatu differences between male and female persons dealing transcripts were analysed using the framework hospicyjnego, Gda?sk 2008, 53-56). with those themes. On the interactional level we found approach. Results: Coordinator in on of 15 of palliative care units that traditional family patterns dominate gender-related Results: Four domains of vulnerability were identified involved in this project and correctional facilities communication. On a structural level the central from the interview transcripts; educator will monitor one of the prisoners helping in finding is the overwhelming evidence of long-term care (i) communicative vulnerability due to distressing hospice. The results will be presented at the end of the as “womankind nursing home”. cancer-related symptoms; WHAT program in April 2009. Conclusions: Gender itself can be described as an (ii) institutional vulnerability among participants who Conclusion: This program will show the possibilities ethically relevant category. For management and were cared for in hospital settings; of cooperation between correctional facilities and professionals within long-term care it is important to (iii) deferential vulnerability which refers to perceived palliative care units. The positive results will allow have an understanding of gender-sensitive care-giving. inequalities between the researcher and participants;

166 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

(iv) medical vulnerability among those with multiple modifying treatment. little or don´t make influence to attitude of nurses to and complex health problems and needs; and Recommendation will be presented regarding study euthanasia (71,7 percent). (v) social vulnerability which refers to participants from design, methodology and standards for this genre of 57,9 percent of respondents indicate that poor spiritual undervalued social groups, for example black and studies. nursing care can be reason of euthanasia application minority ethnic groups. for patients. Conclusion: Current interpretations of vulnerability Age, family status, work record, experience of nursing require re-interpretation when applied to qualitative PE 2.S196 on incurable family members don´t make influence to and end of life research. We make recommendations attitudes of nurses to euthanasia. for researchers and Research Ethics Committees when Limitation of medical treatment at the end of Conclusions: considering this research approach, and the specialist life: A qualitative study on UK oncologists’ 1. Half of nursing hospitals nurses in Kaunas district skills required when conducting it. perception and ethical views assent for euthanasia legalization in Lithuania. 2. Most of nurses know what active and passive Schildmann J1, Tan J2, Vollmann J3 euthanasia is. PE 2.S194 1Ruhr University Bochum, Institute for Medical Ethics 3. Main reason for euthanasia - euthanasia emancipates and History of Medicine / Robert-Roessle-Clinic at the person from intolerable existence. Consideration of palliative principles in persons HELIOS Klinikum Berlin, Charite Medical School with cognitive impairment and life limiting Berlin, Department of Hematology, Oncology and disease Tumor Immunology, Bochum, Germany, 2University of PE 2.S198 Oxford, The Ethox Centre, Oxford, United Kingdom, Müller-Busch H C1 3Ruhr University Bochum, Department of Medical Written information and communication about 1University Witten/Herdecke, Berlin, Germany Ethics and History of Medicine, Bochum, Germany palliative care: Which words are used?

Aim: Decision-making in individuals with cognitive Aim: Limitation of treatment is part of the care for Plu I1, Moutel G1, Vescovali N2, Herve C1, Purssell-Francois impairment (mental retardation, post-traumatic patients with incurable cancer. We explored UK I3 vegetative state, dementia) is a medical, legal, oncologists’ perception and ethical views regarding 1Université Paris Descartes, Laboratoire d’Éthique philosophical and ethical challenge. Especially in these decisions. The paper summarises preliminary Médicale et de Médecine Légale, Paris, France, 2Réseau different states of dementia when the person concerned results of the data analysis, focusing on decision de Santé Le Pallium, Trappes, France, 3Faculté de is confronted with a life limiting disease the question making criteria and oncologists’ ethical views regarding Médecine de Dijon, Département de Médecine Légale, arises if patients with cognitive impairment are able to patients’ involvement in these decisions. Droit Médical et Éthique Médicale, Dijon, France state consistent choices or to what extend the surrogates Methods: UK Oncologists have been interviewed by are involved to make decisions on their behalf. means of a semi-structured interview guide. Interviews Introduction: Upon the disclosure of terminal Methods: Three case histories with different forms of were audiotaped and transcribed. Transcripts were disease, conveying the notion of transition to palliative cognitive impairment (mental retardation with severe coded by identifying major themes of the interviews care to the patient is a delicate step in patient impairment, post-traumatic vegetative state and and by constant comparison regarding similarities and management. It requires sensitive interpersonal skills progressive dementia) with concomitant life limiting differences over the whole sample. from healthcare professionals, the choice of suitable disease are analysed on the criteria for the Results: 11 medical oncologists took part in the study. words to convey bad news being a complex exercise. consideration for withholding or withdrawal possibly Interviews’ duration was between 33 and 54 minutes. Objectives: This study explores the words used for life prolonging medical activity. Respondents named a variety of treatments which may communication about palliative care in written sources Results: Besides prognostication for the effectiveness be limited in the context of care for patients with of information delivered to patients managed through of a medical act, respect for autonomy, individual incurable cancer. Next to common clinical criteria (e.g. a palliative care network. values for the quality of life by the interpretation of performance status), highly individual aspects of the Method: We studied the content of information mimic and gestic expressions, compliance, social physician-patient relationship (e.g. parallels between material used by the French palliative care networks: relations and resilience have to be related to each other physician’s and patient’s biographies) seem to information documents for patients (IDP), information very sensitively when life prolonging treatment is influence these treatment decisions. “Discussions with documents for general public (IDGP) and internet changed into palliative care in persons with cognitive colleagues” and “multidisciplinary team” were named websites (IW). We collected data on: the presence of the impairment. The consideration of anticipated directives as “correctives” to make the decisions less subjective. term “palliative care” and its definition, the terms used can be helpful in interpreting the actual will. There “Time” and “communication skills” were perceived as to describe patients who can benefit from the should be consent of all giving care. factors which further patients’ acceptance regarding the healthcare network and the kind of care delivered. Conclusion: Clinical indication for palliative care in limitation of treatment. In some cases “non-harming” Results: We studied 26 IDP, 25 IDGP and 30 IW. The persons with cognitive impairment needs very careful treatment was given to patients who did not accept term “palliative care” was used in 85% of these items assessment of all aspects of medical decision making, oncologists’ initial recommendation to stop treatment. (in 73% of IDP, in 88% of IDGP and in 93% of IW). In consent of all and transparency in the best interest for The duty “not to harm” was cited as the rationale to documents not containing the term “palliative care”, the person concerned. limit treatment even though patients’ wished to receive other words were found: “continuing care”, it. “accompaniment” or “pain management”. A definition Conclusion: The preliminary results of this study of palliative care was present in 33% of all items (15% PE 2.S195 indicate that decisions about limitation of medical of IDP, 24% of IDGP and 57% of IW). The terms used to treatment pose clinically as well as ethically complex describe the patients were: “person diagnosed with An ethical critique of Best Supportive Care (BSC) challenges to oncologists. Potential strategies for serious and/or progressive disease” (27%) “person at studies in oncology dealing with these challenges in a professional and end-of-life” (23.5%), or “patient in palliative stage” ethically acceptable way will be discussed. (11%). Cherny N1 Conclusion: The information in the material studied, 1Shaare Zedek Medical Center, Cancer Pain and especially the IDP, are sometimes laconic and brief to Palliative Medicine, Jerusalem, Israel PE 2.S197 avoid the sudden disclosure of a fatal prognosis. Patient information needs to be delivered throughout the Since 1988 there have been over 40 oncology studies in Nurses knowledge and attitude towards management of the disease, carefully choosing and patients with advanced and incurable cancer that have euthanasia adapting the wording used to best suit the patient included ´Best Supportive Care” or “Supportive care” as Written information thus seems inappropriate in this a control arm or as an ancillary aspect of care. Detailed Rozukiene L1, Ausrotas R2 context. review of these studies reveals that they can be 1Kaunas Nursing Hospital, Kaunas, Lithuania, 2Kaunas subcategorized into three types University of Medicine, Kaunas, Lithuania 1. Treatment compared to BSC (X vs. BSC) PE 2.S199 2. Treatment plus BSC compared to BSC alone (X+BSC There are a lot of discussions within health care vs. BSC). institutions about legalization of euthanasia in Job satisfaction of palliative care doctors 3. Treatment vs. non treatment, all patients receiving Lithuania. Euthanasia is not legalized in Lithuania. ancillary (X vs. nil). Aim of the study: To assess knowledge and attitude of Reinheckel A R1, Linster H W2 Palliative or supportive care delivered in the nurses in nursing hospitals towards euthanasia. 1University of Applied Sciences Braunschweig / overwhelming majority of these studies represents the 38 nurses were investigated; they work in nursing Wolfenbuettel, Social Work, Braunschweig, Germany, usual practice of the participating researchers. In hospitals in Kaunas district. Questionnaire of 27 2Albert-Ludwigs-University / Institute for Psychology, general it is poorly described, haphazard and is not in questions was created by authors. Clinical Psychology and Psychotherapy, Freiburg, accordance with any referenced standards of practice. Results: Most of nurses (71,1 percent) know that Germany The studies will be reviewed using Emanuel’s 7 euthanasia is legalized in some Europe countries. Even requirements for ethical of clinical research studies (1. 13 percent of nurses think that passive euthanasia is Aim: Working in palliative care is supposed to be social value, 2 scientific validity, 3 fair subject legalized in Lithuania. 61,9 percent of nurses agree with associated with a high risk for professional burnout.

selections, 4 favorable risk-benefit ratios, 5 independent legalization of active euthanasia in Lithuania Here we aim to identify motivation, stress factors, and sessions reviews, 6 informed consent and 7 respect for enrolled (?2=45,431; p<0,05), but 52,4 percent of nurses think individual coping strategies of physicians working in subjects) and the Declaration of Helsinki. that nurse should decide personally about participation palliative care settings. Further, self-assessed specific

The presentation will highlight in euthanasia deed. professional and individual skills needed by palliative (Saturday) 1. Regarding Social Value: Where as there is value to Most of nurses (52,6 percent) designate that euthanasia care physicians were defined. demonstrating that chemotherapy my be better than is death with dignity and free of pain. Nurses, who can Methods: Qualitative study interviewing 16 physicians Poster no chemotherapy, the invocation of SC and the failure explain what is active and passive euthanasia to working in different palliative care settings such as to institute any standards to ensure that patients receive another, can say differences between them (?2 =24,146; hospice, hospital, home care or private practice in quality care undermines the social value of this p<0,05). Germany, Austria, Switzerland, and Norway. The semi- paradigm. Most of nurses (89,5 percents) indicate that euthanasia structured interviews lasted 45-60 minutes; 2. Many of these studies contravene articles 11 and 29 contradicts to Christian ethic but 23,7 percent of subsequently qualitative content analysis was of the Helsinki Declaration. respondents indicate that euthanasia doesn’t contradict performed. 3. Regarding scientific validity: The design fault that is to human rights. Results: The age of the interview partners ranged from manifest is designs 1 and 2 are not present in design 3 Nurses, who are against euthanasia legalization, 30 to 62 years. Work experience in palliative care was which is a more scientifically valid approach to indicate that religion make influence to attitudes from 0.5 to 27 years. All participants reported a high questions of the value if any of further disease towards euthanasia (86,7 percent), but media make professional satisfaction in the palliative care setting.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 167 Poster sessions (Saturday)

The motivation for this choice developed during the provide a variety of interventions including social, (1) relationships caregivers established with care previous employments in anesthesia, medicine or emotional and practical support for carers, delivered in recipients’ family doctors; pediatrics. The main arguments for choosing palliative groups or one to one. The evaluation used mixed (2) how these relationships changed over time; and care settings were the broadening of professional methods to collect data from carers to establish their (3) issues related to information sharing between both spectrum and skills - or to choose a specialty with more reasons for accepting or declining services: parties. direct contact and commitment to patients. Work questionnaire data (n = 64) and interviews with carers Methods: This qualitative study is an exploratory pilot related stress factors were not attributed to patients or (n = 17). A descriptive and content analysis was involving interviews (n=20) with both caregiver groups. their relatives. In contrast, stress factors were mainly undertaken. Semi-structured interviews were transcribed verbatim contributed to structural and organisational problems. Results: Of the 81 carers providing information 61 and managed using N7© software. Thematic analysis The main resources and coping strategies were found in (75%) are female, 20 (25%) are male, and their mean was guided by investigator triangulation. an intact and supporting family as well as in discussions age is 63.8 (range 39 - 83 years). Overwhelmingly carers Results: Challenges exist in the development of a with colleagues. For successful palliative care, abilities who accepted the interventions (n=73) expressed high trusting relationship of information sharing between for communication and personal interactions were satisfaction, and all said that they were relevant to their both caregiver groups and care recipients’ family rated higher than specific skills in medical procedures. social and emotional needs. Carers who declined doctors. Issues of concern regarded how best to prepare Conclusion: We conclude a high job satisfaction of services (n = 8) offered the following reasons: currently for appointments and how to share information on physicians in palliative care despite the demanding receiving enough support; problems taking time away behalf of the care recipient. Key differences between the physical and psychological requirements. Improving from caring responsibilities; and concerns about caregiver groups emerged. Those caring at the palliative communication skills should be a central element in privacy. stage often had little time to build a relationship; this the training of palliative care physicians. Conclusion: These findings indicate that carers may compromised trust-building and negatively affected Supported by research fund of the University of Applied have a number of good reasons for taking up or ICOC. Sciences Braunschweig/ Wolfenbuettel. declining services which include concerns about Conclusion: The results of this exploratory pilot study invasiveness. Service providers may need to provide a have identified avenues that warrant further portfolio of different interventions to be responsive to investigation. The care context, whether palliative or PE 2.S200 carers needs. chronic, must be considered in further research given differences identified in this study. The loved ones process to insight when a patient Funding source: Canadian Institutes of Health is dying PE 2.S202 Research New Emerging Team in Family Caregiving at End-of-Life. Benkel I1, Wijk H2, Molander U1 Distress and burden characteristics of caregivers 1Sahlgrenska Academy, Department of Geriatric in a palliative care unit Medicine, Gothenburg, Sweden, 2Sahlgrenska Academy, PE 2.S204 Institute of Health and Care Sciences, Gothenburg, Costa-Requena G1, Cristofol R2, Cañete J1 Sweden 1Hospital of Mataró, Department of Psychiatry, Mataró, Family dynamics in palliative care - A challenge Spain, 2Antic Hospital St. Jaume and Sta. Magdalena, in a multicultural world: An Australian Background: How long time of insight and Department of Geriatrics, Mataró, Spain perspective understanding the loved ones have to be prepared for the patients upcoming death can be important for the This study assesses psychological distress and burden Nicholls V M1, Southgate S M1 loved ones bereavement. The time of insight is a time symptoms among caregivers of patients staying at the 1Greenwich Hospital, Palliative Care Ward, Sydney, for preparation that the patient is going to die and palliative care unit. Australia different strategies is necessary to manage this phase of This sample consists of the responses of 57 primary life. caregivers caring for patients dying at the palliative care An individuals’ culture and religion form fundamental Aim: Investigate when during the illness process the unit. The data were collected from demographic and parts of their make up and are particularly important loved ones understand that the patient was going to die medical information about the patients and caregivers. when that person is seriously ill and in hospital. (1) and how the process to insight looks like. Which Measurements included; Hospital Anxiety and Families of patients receiving palliative care are strategies did they use in order to manage this Depression Scale (HADS) and short version of Caregiver profoundly affected by the challenges of the illness. (2) situation? Burden Interview (CBI). Means and standard deviations Impending death, forces patients and families into a Method: In depth interviews with loved ones to were computed to provide descriptive information on situation where otherwise functional family units may patients who had died at the Oncology department at all measurements. Correlative analyses were used to become dysfunctional. In avoiding facing up to Sahlgrenska University hospital, Gothenburg. The examine the relationships between variables, and a t impending death, one family member is often singled loved ones were contacted a little more than a year after Student test was calculated to compare means. out as ‘the problem’. The focus is then shifted to that the death to inform of the study. 15 in-depth interviews 49% of the patients were men, with a mean age of 75 family member rather than the patient. was done and the interviews were analyzed by using a years. The most common primary cancer sites were The crisis of terminal illness in families is compounded content analysis, which examines the visible, surface gastrointestinal (28%) and respiratory tumour (19%). by conflicting dynamics within the family unit. content and deals with the explicit meaning of the text. Around 20% were not oncology patients. The mean Palliative care staff face the ever-increasing challenge of The Regional Ethics Review Board in Gothenburg has time admitted to the palliative unit care was 11 days. caring for those patients whose religious and cultural approved the study. 72% of the caregivers were women, with a mean age of needs may vary. This can include extended family Result: Most of the loved ones was knowing that the 54 years. The most prevalent relationship to patient was members. (3) In clinical practice, the most useful patient was going to die but thought it would be son/daughter (49%) and spouse (35%). 77% of approach to defining and working with the family is to sometime in the future and did not thought that death caregivers reported clinical psychological distress (total allow the person and his or her family members to was so close in time. This way of thinking seemed to be HADS score> 11), 56% of caregivers showed significant define ‘the family’ themselves. a strategy to make it possible to live in the present day. characteristics of burden (CBI score >17). High distress Host cultures are often intolerant of the differences, If they talked about the upcoming death this was often was significantly associated with the caregivers’ burden which other cultures bring. (1) done in an earlier phase of the illness time. First when (r = 0.466). The time since being admitted to the The mainstream culture of Australia has its roots in the the loved ones were not able to have any conversation palliative unit care is associated with minor distress and culture and traditions of Great Britain. Australia’s with the patient they prepared themselves for the burden in the caregivers (p< 0.05). Significant population has changed dramatically over the last 40 patients dying. differences were observed between the relationship years due to immigration from other parts of the world Conclusion: The loved ones almost always knew about caregivers, son/daughter caregivers were more including Europe and the Middle East. the upcoming death even if they were acting as they vulnerable than spouses to experience anxiety (t =2.85, This presentation seeks to give a better understanding did not understand. It seemed to be a strategy in order p< 0.05) and burden symptoms (t = 2. 038, p< 0.05). of the various challenges involved in the religious and to make it possible to meet the patient in the present Psychological intervention at the palliative care unit cultural aspects of palliative care from an Australian day and as a living person as long as life was going on. could be provided because of the higher burden related perspective. symptoms of anxiety and depression among caregivers References: of dying patients. (1) A hospital handbook on multiculturalism & PE 2.S201 religion. Neville Kirkwood 1993 Millennium Books (2) Palliative Care Australia (PCA) 2000, Australia’s Why do family carers in end of life care decline PE 2.S203 future in palliative care research: A collaborative support interventions? approach, PCA, Canberra The family caregiver - Family doctor (3) Pall Care Nursing A Guide to Practice; O’Connor & O’Brien T A1, Payne S A1, Ingleton C2, Nolan M3 relationship: A comparison between palliative Aranda, Ausmed, 2003 1Lancaster University, International Observatory on End and chronic care contexts in Canada of Life Care, Lancaster, United Kingdom, 2University of Sheffield, Centre for Health and Social Care, Sheffield, Crooks V A1, Stajduhar K I2, Agarwal G3 PE 2.S205 United Kingdom, 3University of Sheffield, Sheffield 1Simon Fraser University, Burnaby, Canada, 2University 3

sessions Institute for Studies on Aging, School of Medicine and of Victoria, Victoria, Canada, McMaster University, Visiting all hours? The views of hospice staff on Biomedical Sciences, Sheffield, United Kingdom Hamilton, Canada the visiting policy

Brown D J F1, Gray H1, Adam J1, Mclaughlin P1, Wilson L1, (Saturday) Background: Family carers are central to supporting Aim: In Canada, family doctors are heavily involved in people with terminal illness at the final stages of life. providing and/or coordinating both palliative and Hill V1 Poster Little is known about why potentially supportive chronic care. Informational continuity of care (ICOC) is 1St Columba’s Hospice, Edinburgh, United Kingdom interventions are accepted or declined by carers. An a care quality indicator in family medicine and its independent longitudinal evaluation of support establishment necessitates developing a trusting Aim: Open visiting (where there is no restriction on services for family carers of terminally ill people, relationship of information sharing between doctor visiting times) is encouraged in hospices. This abstract provided by organisations in the UK Third Sector, is and patient. There has been little explicit consideration reports the second (staff) strand of a qualitative currently being undertaken. of family caregivers’ roles in establishing ICOC. We aim exploratory study which has the aim of evaluating the Aim of this paper: The aim of this paper is to explore to address this knowledge gap by focusing on ICOC impact of open visiting on hospice patients and staff. explanations of why carers decline the offer of establishment among two Canadian family caregiver The patient strand had previously identified key issues interventions. groups: those caring at the palliative stage and those to be: the need to keep in touch; visitor sensitivity; the Method: Help the Hospices, a national UK charity, providing longer-term chronic care. Objectives are to physical/psychological impact of a visit; the need to be funded 14 hospices and 1 Citizens´ Advice Bureau to comparatively examine: in control. This second strand aimed to establish staff

168 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) views of a hospice open visiting policy. anxiety and self-efficacy in caregivers of cancer patients in care of terminally ill relative they use. Methods: Three focus group interviews of in advanced stages. Thus aims of this study were to Methods: We used standardized questionnaire Coping representatives of hospice staff involved in patient care investigate anxiety and self-efficacy in advanced cancer Strategies Inventory. The questionnaire consists of two (total of 25 staff from the multidisciplinary team) were patients in a palliative care unit. parts. First part interprets relations - how the recorded, transcribed verbatim and analysed Study design and methods: 107 caregivers of respondents have awarded strain situation with thematically. advanced cancer patients, treated for pain relief and emphasis on solvability - insolvability, suggestibility - Results: The main themes related to managing cancer-related symptoms completed the General non suggestibility, caused - uncaused, acquaintanceship complex situations where visitors could hamper/ Perceived Self Efficacy Scale (GSE) and the Spielberger and nameless situation. The second part of facilitate patient centred care: State-Trait Anxiety Inventory (STAI). The State-Anxiety questionnaire is constructed of 72 items - the 1. The importance of family and friends. scale evaluates how the respondent feels “right now, at statements arranged according to eight primary factors. 2. Being an advocate - using gentle persuasion or this moment” and the Trait-Anxiety scale, how the Every coping strategy is represented by 9 items which gatekeeping. respondent feels “generally”. are evaluated on Likert type scale from 1 to 5. 3. The family as part of the caring team. Results: Statistically significant comparisons were Results: Based on the analyses of data obtained we 4. Control versus powerlessness found between anxiety levels and gender (p=0.009), have found out that family members mostly use 5. Shared rooms: the impact on visitors and patients, cohabitation (p=0.002) and relativeness (p=0.004). Self- reception coping strategies oriented on emotions e.g. visitors forming relationships with visitors of other efficacious caregivers revealed a moderate anxiety (r=- (strategy of social support) and reception problem - patients. 0.260, p=0.007) and were more anxious in general (r=- solving strategies (cognitive rescheduling strategy, A number of strategies for developing a flexible ‘patient 0.383, p<0.0005) than those with low self-efficacy. In problem solution strategy). Women taking care of controlled’ visiting policy were identified, including the multivariate analysis (enter method) with STAI as dying relatives use more coping strategies oriented on quiet times without visitors, restricting numbers of the dependent variable and all examined factors as emotions than men. visitors in shared rooms and encouraging relatives to independent, gender, relativeness and self-efficacy Conclusion: The members of palliative take a break from visiting. seemed to influence Spielberger-State. Additionally, interdisciplinary team should concentrate on Conclusion: The study supports and amplifies the results demonstrated that only self-efficacy contributes identification of family members and significant findings of the patient strand of the study. While time to the prediction of caregivers Spielberger-Trait. others´ problems in the process of preparation for loss is precious with family and friends, open visiting Conclusions: In caregivers, levels of anxiety are and the ways of managing and coping the situation. presents considerable challenges to staff, ensuring that significantly correlated with self-efficacy. Furthermore, all patient needs are met. The visiting policy may need anxiety seems to be influenced by gender, relativeness modification to ensure it is patient centred, meeting and self-efficacy. Findings in this study can help health PE 2.S210 the needs of patients and family at the end of life. The care professionals focus on some problems common to study was funded by the hospice where the research caregivers of cancer patients and plan appropriate Emotional overload (caregiver burden) in our was carried out. interventions and research to manage caregivers’ caregivers symptom distress and promote self-efficacy. Oliete E1, Costa M1, Molina T1, Ara C1, Landete A1, PE 2.S206 Mancheño A1, Martín S1, Yagüe A1, Soriano V1 PE 2.S208 1Instituto Valenciano de Oncología, Valencia, Spain Overcoming a chronic illness with home care Perceived quality assessment: Objectifying Aim: Informal caregivers play a highly important role Curammeng L P1 subjectivity in today’s society.In Palliative Care it is considered that 1FEU Hospital, Family Medicine, Quezon City, the unit to be treated consists of the patient and the Philippines Ottolini L1, Dalri C1, Rocchetti L2, Clerici M2 family he or she lives with and who give the patient 1Servizio Cure Palliative, Trento, Italy, 2G.P., Trento, care.Our objetive is to Know the characteristics of the Background: Home care is the provision of Italy patient’s main caregivers in our Home Hospitalization comprehensive health and social services delivered at Unit. home. Introduction: There are currently two departments in Methods: Descriptive cross-sectional study through Objectives: the Province of Trento (PT) that are specifically interviews of both the patients and their 1. To present a case of 49 year old, female with dedicated to palliative home care that directly provide caregivers.Each patient’s socio-demographic Meningioma. care to those that are residents in the health care variables,diagnosis,current treatment,degree of 2. To use family assessment tools to identify potential districts where these two departments are located functionality were recorded.The caregivers’ caregiver and resources. (250000 residents).In the remaining areas (200000 sociodemographic data were collected and they were 3. To discuss the psychological problems confronted by residents),care is provided at home by GPs and home asked to indicate the tie binding them to the the patient and the family. care nurses. patient,the time thus far devoted to caring for the 4. To discuss the role of a home care physician and the Aim: PT provides care in different manners, that are patient,the types of care they gave.They were basic home care skills necessary for the patient. based on the location in which the patient is a administered the Zarit questionnaire. Methods: A patient with Meningioma was enrolled at resident.In order to ensure that all care is provided in Results: Of the 36 patients 11.8% of the patients did the Family Health Care Program for Home care. Review the same manner,it is of fundamental importance to not have a main caregiver(all the members of this on history and physical examination, and weekly visits identify the quality level of care provided,through tools group were women), in16.7% of the patients had a were done. that are able to supply quantitative assessments that can purely professional link with their caregivers. Results: Meningioma is a chronic devilitative disease. be compared. 61.8%of the caregivers were women,major differences Days became critical for the whole family: the disease, Methods: During the first phase,a qualitative survey were noted crossing the patients’ and the caregivers’ the expenses, and the caregiver. Despite all these was carried out by focus groups (FG) for caregivers of genders: 100% of the male patients were looked after by problems the family remained highly functional deceased patients. During the second phase,a women, while 38.8% of the women were treated by (APGAR Score 10). Through the family’s Genogram, questionnaire (Q) was created by studying the domains women (p = 0.01). The level of satisfaction with their primary care giver was identified. The family’s identified by the FG according to the importance that work as caregivers and the caregiver burden level (Zarit) SCREEM, proved that internal functioning was was assigned to each domain by those that use the were the same when the link with the patient was a maintained. The main financial provider was likewise service. Q was submitted to caregivers that participated family relationship as when it was professional. identified, and further strengthened by several external in the FG during a second encounter:observations We found statistically significant differences (p = 0.04) supports (ECOMAP). regarding this tool were gathered. The Q which has only when we analysed the Zarit questionnaire with the Conclusion: Meningioma, a major burden to the been modified, is being sent by mail to all caregivers of stratified Barthel Index. family. To minimize the effect of the patient’s illness deceased patients, throughout the entire PT, in the first Conclusions: and disability, Home care was provided. The role of the six months of 2008. 1. Our caregivers are satisfied with the work they do home care physician was fulfilled: Discussion: The following are the main topics that 2. The caretaker role still falls mainly to wome 1. Healer. Prevent complications thru Basic Home Care resulted from the analysis: Accessibility, invasiveness of 3. Caregiver burden is associated with a higher level of and Wellness Program among family members. the service, symptom control, continuity-management patient dependency 2. Case Manager. Overall coordination of patient’s care, of crisis, the family’s care load, communication, 4. We must exert an influence on the caregiver and utilization of community resources and, and support, attention, dealing with the death of a loved patient as a unit in order to avoid family burnout or empowerment of the family. one. The questionnaire, which is currently being abandonment and to enable the patient to remain in 3. Counselor. CEA method for counselling and family submitted, is able to objectify hypothetical differences his or her usual environment. meetings were done. regarding the quality of care provided, in light of the 4. Educator. Education centered on family’s known organizational and care aspects that are diverse understanding of the disease. amongst each other. PE 2.S211 5. Researcher. Home care and long term management Conclusion: The FG identified the topics to be of meningioma. investigated through the Q, using methods accepted by It’s difficult for the volunteer his activity in a those that use this service. The results regarding the palliative care unit?

comparison of the Q will be available by end 2008. sessions PE 2.S207 Elvira de la Morena M J1, de Luis Molero V J1, Ruiz D1, Vidaurreta R1, Martín R1 1

Anxiety and self-efficacy in caregivers of PE 2.S209 Fundacion Instituto San Jose, Palliative Care Unit, (Saturday) advanced cancer patients Madrid, Spain Family taking care of dying relative Poster Panagiotou I1, Mystakidou K1, Parpa E1, Tsilika E1, Aim: Volunteers must be part of interdisciplinary Katsaragakis S1 Serfelová R1, Nemcová J1, Ziaková K1 teams of PC. Its role is to accompany and support to 1University of Athens, School of Medicine, Pain Relief 1Jessenius Faculty of Medicine, Nursing, Martin, patientes and their families at the end of life, with risk and Palliative Care Unit, Radiology, Athens, Greece Slovakia of emotional or spiritual suffering. That´s why we want to know: Research aims: The diagnosis of cancer may create The task for palliative care nurse is to teach relatives to - The difficulties of volunteering in the PCU. considerable psychological distress for caregivers such use effective coping strategies such as information - The influence of age, sex, school level and experience as increased anxiety, depression, hopelessness, and low search, social support and problem solution. as a volunteer in the perception of difficulty. self-efficacy especially for those who caring their Aim: To find out how family and significant others Method: relatives dying of cancer. Little is known for the role of perceive this strain situation and what coping strategies - Descriptive qualitative study.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 169 Poster sessions (Saturday)

- Self-administered questionnaire with 24 questions. PE 2.S213 PE 2.S215 - Population: Volunteers for Palliative Care of the Orden Hospitalaria de San Juan de Dios. Exploring the role of religious beliefs amongst Children in households of palliative patients: - Statistical analysis of results with the program SPSS the family caregivers of terminally ill cancer Danger of life by unsecured medication 11.5. patients: A qualitative approach Results: Thöns M1, Zenz M2 Men (N=13): Pappa D1, Papazoglou I2 1Praxis für Palliativmedizin, Palliativnetz Bochum e.V., Age (range): 58.69 years (37-74) 1AG. Anargyri Oncology Hospital, Education, Athens, Bochum, Germany, 2Klinik für Anästhesiologie, School Level: Primary 25%, Secondary 66%, University Greece, 2Sismanoglio General Hospital, Athens, Greece Intensiv-, Palliativ- und Schmerzmedizin, BG-Kliniken 8% Bergmannsheil, Bochum, Germany Experience in PC (years): <1: 0; 1-3: 53.8%; 3-5: 0;> 5: Introduction: The topic of spiritual and religious 7.6%, NA: 38.4% believes appears to be gaining recognition as a focus of Most palliative patients would like to spend the end of Situations of minimal difficulty: research in cancer and supportive care. However, the their lives at home. In Germany this wish is at present - To Support to family very tired: 1.61 subject of religious faith and the possible influence of supported by a law that guarantees professional out- - To Introduce yourself and family when the patient religious and spiritual beliefs amongst Greek Family patient palliative care. The treatment of serious enters in the PCU: 1.69 caregivers of terminally ill cancer patients has been symptoms requires various strong medications which, if Situations of maximum difficulty: explored. taken accidentally by a child, could cause fatal - To intervene properly when there is a pact of silence: Aims and objectives: To develop an understanding poisoning. The aim of the research is to find out how 3.09 concerning the role of religious beliefs amongst family many children live in or come to visit households with - To communicate with nervous or angry patient’s caregivers of terminally ill cancer patients. To explore palliative patients. relatives: 3.0 the religious beliefs amongst Greek family caregivers of Method: We analyse the anonymised data of patients Women (N=32): terminally ill cancer patients and role of religious at home-based palliative care during 3rd quarter 2008. Age (range): 53.5 years (37-77) beliefs when dealing with the terminal stage of their Within the framework of giving information about School Level: Primary 35.5%, Secondary 35.5%, relatives’ lives. safety measures the age of the youngest child living in University 29% Design: A qualitative study using a hermeneutic the household or having visited it during the past few Experience in PC (years): <1: 6.25%; 1-3: 25%; 3-5: phenomenological methodology. weeks was taken into account. 12.5;> 5: 31.25%, NA: 25% Sample: A purposive sample of Greek family caregivers Results: 45 complete sets of patients’ data were Situations of minimal difficulty: of terminally ill cancer patients. evaluated. On average the patients were 72 years old, - To iIntroduce yourself and family when the patient Methods of data collection: Semi- structured 84% of them had a basic malignant illness, 88% were enters in the PCU: 1.34 interviews. treated with strong opiates. In 64% of the households Situations of maximum difficulty: Results: Family caregivers derived strength, comfort, were children under 10 or children who had come on - To answer difficcult questions: 2.78 hope and meaning from religion. Religion was an visits. The average age of these children was 4 years. - Intervene properly when there is a pact of silence: integral part of their lives, and not a set of beliefs Discussion: Due to demographic developments and 2.75. detached from everyday life and experience. Also the political efforts made in that field a definite increase of Conclusions: The profile of the PC volunteer in our majority of caregivers indicated that their beliefs have the number of palliative patients being treated at home sample is a woman of 54 years, with secondary studies not changed because of the illness or the deterioration is to be expected. Most of them will be treated with and with a time of 5 years experience. of their loved ones’ condition. opiates WHO level III and in addition to those other The level of difficulty of the daily task is lower for Conclusion: Religion was an integral part of medication which is potentially fatal for children will women volunteers (2.17) than for men (2.27). individuals life’s. A religious framework was used to be used. Those patients looked after by us were visited The time of experience in CP is the main factor attach meaning to participants’ experience and by children, the youngest of whom was in general a influencing on level of difficulty perceived by the maintain a sense of hope. Religious beliefs are toddler (Median 4). volunteers. important coping strategies for family caregivers, and Insufficiently safeguarded drugs mean a real danger emphasis should be given by the health professionals to especially for very small children. Most opiates are the religious and spiritual concerns of caregivers. therefore categorised as “one pill can kill”. PE 2.S212 In Bochum we had a case of Oxazepam poisoning which ended happily - but an opiate would have ended Occupational roles performance of the formal PE 2.S214 fatally for a two year old boy. caregivers in a palliative care service Conclusion: Within the framework of out-patient Family resilience: A study of the lived experiences palliative care it is absolutely necessary to inform the Othero M B1, Rocha C R1, Arini T1 of family members of people with oncological households about the safe storage of potentially fatal 1Hospital Premier, Occupational Therapy, São Paulo, terminal illness, while hospitalized medication. Brazil Cunha S1 During the last decade, the role of the formal caregivers 1Coimbra University Hospital, Coimbra, Portugal PE 2.S217 has been increased in the context of the health assistance. The caregiver is also affected by the patient Aim: To describe some dimensions of resilience in the A legacy for life pre “Dignity Therapy” and the family’s suffering because, upon taking on this family members of patients with an oncological illness role, there may be losses in the previously occupational in terminal phase, while hospitalized. Middlemiss T P1, Middlemiss J M2 roles, resulting from the physical and emotional Study design and methods: This study was carried 1Edinburgh Cancer Research Centre, University of overloading of his work. out at a ward of a central hospital. Here we can find Edinburgh, Palliative Medicine, Edinburgh, United Aims: To introduce the occupational performance what is commonly designated as “a reference visitor”, a Kingdom, 2Scottish Marriage Care, Brechin, United pattern of the formal caregivers of a Palliative Care visitor chosen by the patient, who will accompany Kingdom service; to check if there are losses and how they affect him/her daily from 9 a.m. to 8 p.m., assisting in the the occupational roles performed by those caregivers. process of necessary cares of the patient, like feeding, Background: In 1982, while Dr Margaret Dunn was Methodology: A quantitative study was chosen throw hygiene, and most importantly, emotional support, dying of cancer she recorded taped messages to her 2 the application of the Brazilian version of the Role accompanying him/her until the moment of death. A year old son. During this time and after her death, her Checklist, which evaluates the perception of their phenomenological hermeneutic study was made, six siblings, who were spread over four continents, participation in ten occupational roles (in the past, in according to the Max van Manen approach, which communicated through letters. These messages and the present and planned for the future) and the values included the participation of four reference visitors, letters, along with recent emails from the now adult attributed to them. Thirty-five caregivers who were which selection was made by rational selection. son have been collated and restudied. working in this service between the period of Findings: Some themes which emerged and Aims: To draw attention to the themes that emerge September 2007 and October 2008 participated in this interconnected in a complex and systematic way, from a united family who experienced bereavement. To survey. For data analysis, loss was the basis for the role allowing access to the essence of the phenomenon and explore the current resonance of a legacy document performed in the past, not performed in the present to formulate a diagram to understand the phenomenon created 27 years ago. To consider how much of what is and planned for the future. that is being studied: resilience; hospital context; taking now called “Dignity Therapy” is intuitive and how Results: Among the ten occupational roles analyzed - care of another; Communication processes; much it can be caught, taught and developed into good student, worker, volunteer, caregiver, home maintainer, Organization patterns; Beliefs sistems and suffering. practice. friend, family member, religious participant, Conclusion and implications: The carrying out of Methods: Using a thematic approach, the final words, hobbyist/amateur and participant in organizations - this investigation brought a new character to the letters and emails were analysed to identify the there could be seen a great loss related to the student present moment in which we are, in so far as by underlying messages relating to mind, body and spirit. (69%) and religious participant (40%) in disregard of studying the experiences of family members of patients A careful hindsight review of how the family developed the worker and family member which didn’t show any with oncological illness in terminal phase, who was conducted. This explored how much they expected losses. The caregivers showed an absent participation in accompany their patient in a hospital unit, I tried to the death to impact on them and what the actual

sessions the participant in organizations role. According to the study not only their experience in dealing with pain effects were. role values analysis, the caregivers gave a major but mainly their strengths, their resilience capacities. Conclusions: No member of the family offered a importance to the student (97%), worker (97%), family Concerning resilience development and promotion, it negative response to their experience. The approach

(Saturday) member (100%) and religious participant (69%). carries important social implications, given that the proved to be a catalyst for open, honest communication Conclusion: After analyzing the collected data, it was death experience in a family treated in a healthy and during future experiences relating to life and death. Poster possible to conclude that the caregivers suffered a great supportive way reduces the morbidity risks and family, Many members of the family including the next loss in roles considered of major importance and so the professional and social consequences. generation are involved in empowering others towards Palliative Care services must develop strategies to emotional intelligence either professionally or support this group. voluntarily. An individual legacy document can make a profound impact across several generations.

170 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

PE 2.S219 Hungarian physicians are defined and presented in not solely the result of biological degeneration, but also more detail. of the failure of social and cultural institutions. Even Reasons to work in palliative care: An empirical Conclusion: Family burden and system related under the most debilitating conditions, given the right study among Indian palliative-care nurses and obstacles were more consistently identified by support, it is possible to sustain the dignity of the physicians Hungarian physicians. U.S. physicians gave more individual and members of his or her surrounding diverse responses, primarily focusing on the family. world. Photography has much to teach us in this regard. Gielen J1, Gupta H2, Rajvanshi A2, Bhatnagar S3, Mishra S3, These distinctions reflect the social, cultural, and We urge that photographs such as these can help Chaturvedi A K4, Van den Branden S1, Broeckaert B1 health care system differences in which U.S. and people to understand and adopt such a perspective - 1Catholic University Leuven, Interdisciplinary Centre Hungarian physicians provide end of life care. The U.S. and should be more widely utilized in the promotion of for the Study of Religion and World View, Leuven, Fulbright Program and the Summa Foundation funded palliative care. Belgium, 2CanSupport, New Delhi, India, 3All India this study. Institute of Medical Sciences, Institute Rotary Cancer Hospital, New Delhi, India, 4Rajiv Gandhi Cancer PE 2.S223 Institute and Research Centre, New Delhi, India PE 2.S221 The interdisciplinary team: Themes in care Aims: Religion played an important role in the early Everyday life of people with advanced cancer: years of the modern palliative care movement. We Activity, time, location and experience Powazki R D1, Walsh D1, Lasheen W1, Davis M1, LeGrand wanted to know what motivates contemporary Indian S1, Lagman R1, Russell K M1 physicians and nurses to devote themselves to palliative la Cour K1, Nordell K2, Josephsson S3 1Cleveland Clinic, The Harry R. Horvitz Center for care. We were particularly interested to assess to what 1University of Southern Denmark, Institute of Public Palliative Medicine and Supportive Oncology, extent religion motivates them. Health Research Unite Health, Man and Society, Cleveland, United States Methods: We opted for an explorative research design Odense, Denmark, 2Research and Development in West based on 27 semi-structured face-to-face interviews at Göteborg Association, Göteborg, Sweden, 3Karolinska Aims: Research is limited about the Palliative Medicine following Grounded-Theory methodology (Glaser & Institutet, NVS, Division of Occupational Therapy, Interdisciplinary Team (IDT). Challenges include Strauss). 14 physicians and 13 nurses were interviewed Huddinge, Sweden psychosocial care, team structure and efficiency. An 8 from May to September 2008. At the time of the week observation study of a daily IDT meeting was interview all respondents were working in different Today increasing numbers of people with advanced conducted to identify care themes. palliative care programmes in New Delhi (palliative- cancer live at home for longer and longer periods of Methods: Our IDT comprises physicians, nurses, social care ward, home care, hospice, pain clinic). time towards the end of life. Advanced cancer impacts worker, music therapist, and discharge case manager for Results: Most respondents started working in palliative the individuals´ capacity to engage in everyday a 23 bed acute care palliative medicine unit (ACPMU). care accidentally: they came to know about palliative activities. For example bodily deterioration may lead to Weekly observation for themes was done. Hierarchical care after responding to a vacancy in a palliative-care a variety of losses from basic functional skills to the cluster analysis identified theme patterns. programme (11 respondents), or after starting a ability to maintain social roles. While there is an Results: 9 major themes were derived from 59 patients: specialisation in anaesthesiology (7 respondents). awareness of the problems an advanced cancer may 1) varied interdisciplinary viewpoints Working in palliative care is experienced as a very cause in everyday life, little is known about what people 2) difficult anti-tumor treatment transitions satisfying job, especially because palliative care offers actually do under such circumstances. More 3) caregiver conflict holistic treatment, and the physicians and nurses feel specifically, what activities they engage in and how 4) changing care goals their work is appreciated by the patients and their these are experienced. If palliative care is to support 5) discharge delays relatives. Two physicians and five nurses explicitly gave people with advanced cancer in living at home for as 6) psychosocial assessment and family conference a religious interpretation to their work. Three long as possible, there is a need to assemble specific needed to clarify discharge plan respondents told that their work in palliative care is a knowledge about the activities that occupy the daily life 7) service conflict service to God, either because God dwells in the of people with advanced cancer and about the ways in 8) inadequate discharge resources and patient, or because God particularly loves those who which activities are meaningful to them. 9) no spokesperson. suffer. Two respondents saw themselves as an The aim of this study was to describe and explore the The analysis identified 3 theme clusters in order of instrument of God’s grace. Questions regarding everyday activities of people with advanced cancer in strength: Clinical Operations (Themes 5&7), religious issues showed that most respondents regularly relation to time, location, social engagement and Psychosocial (Themes 6&8&9), Goals of Care (Themes pray, meditate, or visit a temple. experience. Forty-five adult participants were sampled 3&4). Themes 1& 2 were most frequent but did not Conclusions: Professional gratification and personal from an oncological out-patient unit representing the cluster. The goals of care cluster identified caregiver satisfaction seem to be more important stimulating three cancer diagnosis, lung- colon- and breast cancer. distress which caused aversion or diversion of factors to work in palliative care. Nevertheless, religion Data was collected by a Time Geographical Method communication when transitioning from palliative helps several respondents to give meaning to their including diaries and interviews. The data were chemotherapy to palliation without chemotherapy. efforts in palliative care. organized by a specific software programme producing The clinical operations cluster involved timely Funds: Faculty of Theology (KUL) & VLIR-UOS time-use graphs and all data were analyzed with a assessment and interventions. The psychosocial cluster constant comparative method. The results showed that linked spokesperson, family conference, assessment the participants´ days were spent mostly at home, and family- caregiver support to plan of care and PE 2.S220 dominated by self-care and leisure with limited social discharge resources. engagement. A central feature of activity rhythms were Conclusions: Clusters are clinically relevant domains Barriers to caring for terminally Ill patients in identified to be composed of routine and novel and can help classify IDT meeting content and process. the home: A cross-country comparison activities closely related to the participants experiences Functional team members recognize care needs, report of satisfaction with daily life. For palliative care services concerns, and collaborate in proactive patient care. Radwany S1, Richmond J2, Albanese T3, Csikos A4, the results suggests a need for developing services to Palliative medicine is an entry point for care transition. Mastrojohn J5 support people with advanced cancer in creating and The IDT manages barriers and potential points of 1Summa Health System, Hospice and Palliative Care maintaining personal rhythms. conflict. Themes identified domains that need to be Services, Akron, United States, 2The University of Akron, addressed for effective hospital discharge. The study Counseling, Akron, United States, 3Summa Health identified themes for quality improvements in the IDT. System, Internal Medicine, Akron, United States, PE 2.S222 4University of Pecs, Institute of Family Medicine, Pecs, Hungary, 5National Hospice and Palliative Care Improving palliative care knowledge and PE 2.S224 Organization, Quality and Palliative Care, Alexandria, awareness through the medium of photography United States Enteral feeding for older people with advanced Clark D1, Greenblat C1 dementia: Findings from a Cochrane systematic Aim: This qualitative study aims to compare a sample 1Lancaster University, School of Health and Medicine, review of U.S. and Hungarian physicians’ perceptions of Lancaster, United Kingdom obstacles to caring for terminally ill patients in the Candy B1, Sampson E1, Jones L1 home. We hypothesize that physicians’ perceptions will Aim: As the palliative care effort increases around the 1University College London, Marie Curie Palliative Care differ based on cultural differences and accessibility of world, there is a growing need to explore how best it Research Unit, Department of Mental Health Sciences, hospice programming. can be documented and the role that documentation London, United Kingdom Methods: Purposive samples of physicians from may play in advocating for policy and service Hungary and the U.S. were surveyed. A voluntary, self- improvement. In recent years there has been a modest Background: The ageing global population is administered survey and cover letter were mailed to all but important increase in the availability of visual increasing the prevalence of dementia. In advanced practicing family physicians (339) in Baranya County, materials - including still photography and film - that dementia poor nutrition and the use of enteral feeding Hungary. The survey was written in English, translated “face” the dying process with sensitivity and are common. This is not without controversy; the into Hungarian, and pre-tested on Hungarian faculty understanding and explore the role of the palliative benefits are unclear, as are the outcomes to measure i.e.

physicians. After similar vetting in the U.S., the survey care approach. length of survival versus quality of life (QOL). Potential sessions and cover letter were mailed to 300 family practitioners Results: We discuss the potential use of photographs to harms include aspiration, gastrointestinal disturbance, and general internists in Summit County, Ohio in the impact on the attitudes and beliefs of policy makers prolonging psychological distress and physical restraint

U.S. The authors independently content analyzed and funders, healthcare professionals, grassroots to prevent extubation. The ethics of not providing (Saturday) responses to an open-ended question and later organizations, families and patients themselves about nutritional support are controversial. convened to compare results and arrive at consensus. various aspects of delivering care near the end of life. A Aim: To evaluate outcome of enteral nutrition for older Poster Results: Comparing percentage of responses, the most set of photographs by Cathy Greenblat, which is on people with advanced dementia. common barriers reported by Hungarian physicians exhibit at the conference, will be used to explore this. Method: 7 citation databases, including MEDLINE were: Demands of 24 hour care on the family - 34.4%; The photographs come from institution based and were searched. Randomised controlled trials (RCTs), Treatment related obstacles - 12.98%; and Program home care programs in the USA, France, Japan, and controlled clinical trials, controlled before and after and related obstacles - 12.6%. U.S. physicians responded India. They illustrate humanity and compassion in the interrupted time-series studies were included. with a less clearly defined pattern: Inadequate support delivery of palliative care, showing clearly what is Observational studies were included in the absence of for families - 14.8%; Demands of 24 hour care on the meant by maintaining dignity while delivering care to controlled evaluations. Meta-analysis was considered family - 14.8%; and Families’ lack of professional patients and those close to them. for RCTs with comparable characteristics. knowledge about the care of terminally ill patients - Conclusions: The sociological perspective teaches us Results: No controlled trials were found. 6 9.6%. Additional layers of barriers for U.S. and that being defeated by the ravages of age and illness is observational studies were identified. In 5 there was no

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 171 Poster sessions (Saturday)

clear evidence that survival improved. None examined outlines findings and recommendations on extending of life care. A multi professional group from both impact on QOL, behavioural and psychiatric symptoms access to these patient populations. Challenges discipines in Northwest England utilising National end of dementia (BPSD) or activities of daily living. identified included: of life tools developed a working model of end of life Nutritional parameters were measured; one study found - uncertain disease trajectories; care for patienys with advanced dementia to be utilised no impact on weight, BMI, albumin or haemoglobin, - establishing clarity on the role of palliative care in in Care homes. the other a limited effect on weight gain. One study non-malignancy; Methodology: A multi-professional group of found an increased risk of pressure sores and one a - inconsistent access to SPC; professionals from both acute and community sevices decreased risk. Two studies commented on adverse - lack of comprehensive chronic disease-management was formed to identify a joint model of care that could events. These were more common in enteral feeding: services in Ireland and be delivered to patients with end stage dementia in care they included abdominal abscess, pneumonia and - developing collaborative approaches between disease- homes.A workshop format was adopted with physical restraints. specific specialists, SPC, primary care and older representatives from old age psychiatry, palliative Conclusion: There is no evidence of benefit in terms persons’ services for those with advanced life-limiting care,speech alnd langauge therapy, dietetics, primary of survival, nutritional parameters or pressure sores conditions. and social care and carer societies. A pathway was from enteral feeding in older people with advanced Conclusion: The implementation of the report’s developed to be used along side symptom control, dementia. Studies have not assessed the impact on recommendations includes: referral guidelines and guidance regarding use of end of QOL, function or BPSD. Methodologically and ethically - Appointment of clinical facilitators to pilot and life tools such as advanced care plans and Liverpool randomised trials are challenging, however it is develop service models integrating palliative care care of dying pathway. important to find robust ways to evaluate the impact of within disease-specific frameworks; Two care homes in locality were selected who were enteral feeding. - Generating disease-specific palliative care information already using Gold standards framework and a material on non-malignant conditions including programme of education around topics of symptom COPD, heart failure, dementia, chronic kidney disease, control, end of life communication issues was PE 2.S225 scleroderma, pulmonary fibrosis, cystic fibrosis and delivered. multiple sclerosis; Results: Evaluation is planned comparing care Attitudes of specialist palliative care consultants - Standardised eligibility and discharge criteria for delivered in pilot nursing homes with standard care, to the use of interventions in the care of motor access to SPC; looking at staff satisfaction and confidence around neurone disease - Advocating and promoting awareness of palliative care managing end of life care, the number of transfers to for non-malignant diseases through production and hospital of patients in terminal stages and numbers of Oliver D J1, Tallon C2, Sykes N3 dissemination of educational materials based on the deaths in care home. 1Centre for Work and Learning, University of Kent, study’s findings. Conclusion: It is hoped that this model of joint Chatham, United Kingdom, 2Cynthia Spencer Hospice, working will improve team working and be replicable Northampton, United Kingdom, 3St Christopher’s in hospital and home settings across the locality. Hospice, London, United Kingdom PE 2.S227 Further joint educational events including carer workshops are already planned. Background: The use of nutritional enteral feeding, Systematic screening of symptoms, cognition using a percutaneous endoscopic gastrostomy (PEG) or and quality of life issues in heart failure patients percutaneous radiological gastrostomy (PRG) and - Collaboration: Pilot project between cardiology PE 2.S229 ventilatory support, using non-invasive ventilation and palliative medicine (NIV), is increasing in the care of people with A retrospective review comparing malignant and MND/ALS in the UK. However the use of the techniques Thai V1, Ezekowitz J2, Cujec B2, Hodnefield T2, Sanderson L2 non-malignant referrals to a hospital-based varies greatly across the UK and it assumed that this 1University of Alberta, Department of Oncology, palliative care service may be due to differing attitudes towards these Edmonton, Canada, 2University of Alberta, Department interventions from the health professionals providing of Cardiology, Edmonton, Canada Sheehy-Skeffington B R1, Higgins S1 care. 1Adelaide and Meath Hospitals, Tallaght, Palliative Care, Objectives: The study aims to ascertain the attitudes Congestive heart failure remains one of the leading Dublin, Ireland towards, and the discussions held with, patients under cause of death in the Western world. Heart failure (HF) the care of specialist palliative care services, who may is a chronic, inexorable debilitating illness with Aims: Palliative Care teams are increasingly receiving develop symptoms which could be helped by increasing prevalence in the elderly population. referrals for patients with non-malignant conditions. gastrostomy insertion or NIV. Mortality rates for HF patients are as high as 30% in the This study was performed to examine the nature of Methods: Consultants in palliative medicine in first year after diagnosis and the need for emergency referrals to a hospital-based palliative care team(PCT) hospices providing specialist palliative care for people department visits or hospitalizations is staggering. With and the outcomes and to examine the use of with MND/ALS were contacted by telephone by the an aging population, better cardiac therapies turn an medications and level of active interventions at the researchers, who are also consultants in palliative acute disease into a chronic disease (e.g. fibrinolytic time of death, looking for any differences between medicine. A questionnaire had been developed and the and primary percutaneous intervention). Coupled with malignant and non-malignant referrals. consultants were asked questions about their attitudes the other chronic illness associated with age such as Methods: Referral statistics for patients seen by the and use of PEG and NIV in a structured format. dementia, renal disease etc, the care of patients with HF PCT were examined, including patient demographics Results: The results show that there are differences in is becoming increasingly complicated and results in and the outcome for each patient. A retrospective chart the attitudes of consultants in the way that these areas significant symptom burden. review was performed for thirty consecutive malignant of care are discussed. These attitudes are changing and HF patients report high symptom burden, which referrals and thirty consecutive non-malignant there was the expression for the need of careful includes pain, anxiety, depression and shortness of referrals, who died in the same referral episode. Interval multidisciplinary discussion before there is discussion breath. These rates are similar to patients with cancer between referral and death was recorded, as well as the with the patient and family. and Acquired Immune Deficiency Syndrome but have use of medications for symptom control. Interventions Discussion: The use of theses interventions are not been addressed well in the literature. At the such as phlebotomy, IV antibiotics and artificial feeding important in the provision of palliative care for people University of Alberta Hospital, a pilot project between were recorded. with MND/ALS - the use of gastrostomy can be very Cardiology and Palliative Medicine has been set up to Results: Of 343 new inpatient referrals in 2007, 25% helpful in improving the quality of life and NIV can help better manage the refractory cardiac symptoms for had non-malignant disease. 71% of the non-malignant both improve quality and length of life. There seem to heart failure patients. It is called the Heart Function patients died during the first referral episode, while be a great variation in the attitudes of specialist Clinic-Palliative Care Clinic (HFC-PCC). 38% of the malignant referrals went home. The median palliative care doctors towards these interventions. The This is made up multi-disciplinary team with a interval between referral and death was 13 days in the results of this study will help inform the best ways of Cardiologist, Palliative Care physician, 2 nurse non-malignant group and 25 days in the malignant helping doctors and other health care professionals specialists (1 Palliative Care nurse and 1 HF nurse), a group. Prevalence of opioid use was similar in both discuss these issues in greater depth and enable people pharmacist and a dietician. groups, but higher doses were used in the malignant with MND/ALS to take informed decisions about their Using standard palliative care tools including the group. Similar levels of active intervention prior to care. Edmonton Symptom Assessment Scale (ESAS), Palliative death were found between the two groups. Performance scale (PPS), Mini-mental state Conclusion: 25% of patients seen by this service have examination (MMSE), New York Heart Association non-malignant disease. Our figures indicate that these PE 2.S226 Class (NYHA) and KC Cardiomyopathy Questionnaire patients are referred at a more advanced stage in their (KCCQ), we would have screened approximately 300 illness and are more likely to die during the first referral Palliative care for all: Challenges and patients with the ESAS, MMSE, KCCQ, NYHA and PPS episode. Our review indicates that cancer patients implementation by 31 Jan09. receive higher doses of opioids than non-cancer This pilot project is the first in heart failure to assess patients. In both groups many patients received active Lynch M1, Conway J2, Edghill A1 and correlate the symptom burden, functional status, interventions within 24 hours of death, though this did 1Irish Hospice Foundation, Dublin, Ireland, 2Health cognition and quality of life issues of these patients. not appear to differ significantly between the two Service Executive, Dublin, Ireland groups. sessions Aim: Physical and psychological symptom burdens of PE 2.S228 many life-limiting, non-malignant diseases compare to PE 2.S230

(Saturday) those of cancer. Palliative care has a role in the care A collaborative approach to the development of pathway of people with non-malignant conditions, but a working model for end of life care for patients Supportive and palliative care in End Stage Heart Poster traditionally specialist palliative care (SPC) services have with dementia Failure (ESHF) patients: A literature review focussed on people with cancer. The Irish Hospice Foundation (IHF) and the Health Service Executive Littlewood C1, Lindon F2 Low J T S1, Pattenden J2, Jones L1 (HSE) undertook a joint study in 2007/08 on how 1St Helens & Knowsley Hospitals, Liverpool, United 1Marie Curie Palliative Care Research Unit, Mental specialist and non-specialist palliative care could extend Kingdom, 2Halton & St Helens Primary Care Trust, Health Sciences, UCL Medical School, London, United to people with non-malignant conditions, with an Liverpool, United Kingdom Kingdom, 2BHF Care and Education Research Group, initial focus on COPD, dementia and heart failure. Dept of Health Sciences, York University, York, United Methods: Methodology was wide-ranging literature Background: Evidence to date shows few examples of Kingdom review and consultation through collaborative working teamworking in the fields of old age psychiatry and groups, guided by a national steering group. specialist paliative care. Dementia due to it´s long Heart failure is a major cause of morbidity and Results: The study’s report “Palliative Care for All” disease trajectory is particuarly difficult to plan for end mortality in the Western world and its prevalence may

172 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) increase with the ageing population. Many end stage group were ascertained and compared to the issues are few patients profiting from palliative care programs. heart failure (ESHF) patients are thought to have identified by the patients themselves. Aims: To determine the prevalence of symptoms in palliative needs, but it is necessary to collate existing Methods: During the development of a new palliative patients with end-stage heart disease included in a knowledge by reviewing the literature systematically. care service a qualitative assessment of patients´ needs palliative care program. This review aims to describe: has been compared to the results from 3 focus groups, Method: Descriptive retrospective study. The data from a) the impact of ESHF on patients and close persons; involving 8 neurologists, 1 rehabilitation specialist patients with end-stage heart disease included in b) the perceptions of health professionals caring for (expert in artificial ventilation), 1 physiotherapist and 1 support palliative care programs in a period of five years ESHF patients; speech and language therapist (all working in were collected. The inclusion criteria were those c) health care provision for ESHF patients and close department for the care of people with motor neurone recommended by the National Hospice Organization. persons. disease, multiple sclerosis or Parkinson’s disease and The symptoms were assessed using the Edmonton A systematic literature search using Medline, Embase, parkinsonisms). These professionals were asked to give Symptom Assessment Scale (ESAS). Others data were CINAHL, PsycINFO and AMED identified 44 relevant their opinion about the main unmet needs of this registered: the functional situation using the Barthel studies. The main findings were: symptoms of ESHF, population. Index (IB), the Karnofsky Index (IK), the place of death, mainly fatigue and breathlessness, have a major impact Results: A content analysis of the groups highlights the and the permanence time in the palliative care on the daily lives of both patients and close persons; participants awareness about the high burden of program. patients have poor understanding of their illness and physical symptoms of their patients, such as Results: A total of 1921 terminally ill patients were few opportunities to discuss their disease with uncontrolled pain and breathlessness, as well as the included in the program. 108 (5.6%) were non- healthcare professionals; healthcare professionals lack psychosocial issues and the spiritual dilemmas. There oncological, among them 18 (16.6%) were patients confidence in diagnosing ESHF and communicating a was little knowledge of pain therapy and a low use of with end-stage heart disease. The average age was 76 poor prognosis to patients, resulting in barriers to the opioids. All participants where supportive of the years (section 58-90). 94.4% showed a IK lower tan 50 provision of good quality coordinated care. Many development of a new palliative care service aimed at and 77.7% presented a serious or severe functional specialist palliative care teams have good collaborative improving patients quality of life, supporting deterioration (IB <60). The referred symptoms were: links with heart failure services and primary care, but caregivers, aiding end of life choices and issues and asthenia (83%), dyspnea (66%), xerostomy (61%), work to evaluate the impact of health service provision reducing inappropriate hospital admissions and anorexia (55%), constipation (38 %), insomnia (38%), for ESHF patients and close persons has been limited. overtreatment. Respite hospice admission was felt to be anxiety (38%), depressed mood (38%), pain (27%), There are good quality studies looking at experiences fundamental to sustain care at home, by giving nausea (16%), and cough (11%). The average number of and needs of ESHF patients and close persons, but more providing support for families. symptoms by patient was 5 (section 1- 10). Of 18 research is needed to evaluate the effectiveness of Conclusions: Professional carers are aware of the patients included, 17 have died. The average stay at the health service interventions for ESHF patients and close needs of patients but are less aware of the role of program was 70 days (section 1-660), dying at home 10 persons, and their feasibility and acceptability to health palliative care and the use of medication, and patients (55.5%). care professionals. particulalry opioids. They do see the need for Conclusion: This study suggest that patients with end- networking among hospital services, palliative care and stage heart disease have great symptoms control needs, primary medicine and care pathways may be developed similar to those of terminal patients with cancer thus PE 2.S231 to aid the assment and palliative care of this patient being able of benefit from palliative care. The disease´s group. increasing prevalence underscore the need to integrate The development of a new specialist palliative this model of care with the acute care approach that has care service for people severely affected by dominated heart failure treatment. neurodegenerative conditions in Italy PE 2.S233

Veronese S1, Gallo G1, Valle A1, Oliver D J2 A qualitative assessment of the physical PE 2.S235 1Faro Foundation, Palliative Care, Torino, Italy, symptoms of people severely affected by 2University of Kent, Centre for Work and Learning, neurodegenerative conditions: The physical What are the palliative care needs of adults Chatham, United Kingdom symptoms receiving palliative care newly diagnosed with HIV in Uganda? A multicentre study Aims: This study shows the development of the Veronese S1, Gallo G1, Valle A1, Oliver D J2 specialist palliative care service (SPC) in Turin, Italy, 1Faro Foundation, Palliative Care, Torino, Italy, Simms V M1, Harding R1, Namisango E2, Penfold S1, with increasing involvement in the care of people with 2University of Kent, Centre for Work and Learning, Nsubuga Kwebiiha C2, Kataike J2, Banga Nkurunziza G2, neurodegenerative conditions. Chatham, United Kingdom Powell R A2, Higginson I J1 Methods: A 3 year programme has been developed: a 1King’s College London, Department of Palliative Care, literature review; a qualitative assessment and a Aims: People severely affected by neurodegenerative Policy and Rehabilitation, London, United Kingdom, randomized controlled study of the new service. 22 conditions experience many symptoms and other 2African Palliative Care Association, Kampala, Uganda patients severely affected by amyotrophic lateral psychosocial and spiritual problems, similar to those of sclerosis (ALS), multiple sclerosis (MS), Parkinson’s cancer patients. As a part of a PhD program in palliative Background: World Health Organisation guidance disease (PD) and related disorders (PDRD) and their care at the University of Kent a project has been states that palliative care should be provided from main carers were interviewed and there were 3 focus developed to assess people severely affected by diagnosis of HIV until death, but there is little evidence groups with neurologists and other professionals Amyotrophic Lateral Sclerosis (ALS), Multiple Sclerosis of the specific needs of people at HIV diagnosis. involved in the care of these patients. (MS), Parkinson´s Disease (PD), Multisystems Atrophy Understanding the nature and prevalence of needs is A randomised trial of care is being undertaken to (MSA) and related disorders and to provide and essential to delivering appropriate care. evaluate the impact of the new service considering the evaluate, a new specialist palliative care service in Turin Aim: To determine the palliative care needs of adults in palliative care outcomes of people severely affected by area. Uganda in the two weeks following HIV diagnosis. ALS, MS, PD and PDRD . 50 patients, divided in the Methods: In order to assess palliative care needs of Methods: A prospective longitudinal study in Uganda different diagnosis, are being randomized to two these population living in Turin area 22 in depth recruited adults attending six HIV care facilities either groups: a fast track group (FT) will receive the service interviews have been conducted with patients and their with a new diagnosis, or a new presenting problem. immediately while a standard track group (ST) will have carers - 9 ALS, 7 MS, 5 PD and 1 MSA. Content analysis Participants completed the APCA African POS, MOS- to wait for a 4 month period of time. Comparison the of the transcripts verbatim has been performed, HIV and a Client Services Receipt Inventory at monthly results of the stanardised tests will allow the looking at the physical symptoms experienced in this intervals for three months, with additional effectiveness of the new service to be evaluated. patient group. demographic and clinical details collected at baseline. Results: The qualitative interviews and groups Results: Out of the 22 interviewed patients 100% had Cross-sectional baseline data for newly diagnosed confirmed the high burden of palliative care needs in severe impairment of movement: most were on a people are presented here. our sample and the need of a specific education process wheelchair, some were bedbound. 95% had swallowing Results: In total 187 people were recruited within two for our team members.The need for specific training to troubles or choking with food episodes and nutritional weeks of HIV diagnosis, 108 (58%) women and 79 men. educate the professionals was identified. Data analysis related issues. 82% reported to be in pain, 82% The mean age was 31 for women and 36 for men, with of the RCT will start at the end of the study period and dyspnoea or respiratory problems, 73% bowel a range from 18 to 55. 75 (40%) were diagnosed on the preliminary results will be available in 2009. problems, 64% speech impairment, 64% depression, day of recruitment to the study. Only 32 participants Conclusions: People severely affected by anxiety or insomnia, 59% urinary problems, 45% (17%) were accompanied by a carer. The POS responses neurodegenerative conditions suffer of a high burden drooling and other mouth issues, 45% skin troubles, showed that in the three days prior to baseline, 22% of of unmet palliative care needs. Through education of 60% other symptoms such as recurrent fevers, blurred participants were in severe, very severe or the professionals involved and the development of the vision. overwhelming pain, and 17% experienced other new servicie it is hoped that the care provided will Conclusions: This initial study confirms the high symptoms to the same intensity. 15% never felt at improve the quality of life and care for this patient prevalence of physical uncontrolled symptoms in this peace, 27% had been unable to share how they felt with group and their families. The approach taken should population. A specialist palliative care service is being anybody, and 23% had been worried all, most or a lot of enable a clear assessment of this development. developed to help meet many of these needs, with a the time. 11% never, or not very often, found life specific domiciliary and hospice service in the Turin worthwhile.

area. Conclusion: At the time of diagnosis with HIV, people sessions PE 2.S232 in Uganda experience physical, psychological, spiritual and social palliative care needs which must be

Palliative care needs of people severely affected PE 2.S234 addressed as soon as possible. These are the first data to (Saturday) by neurodegenerative conditions: The views of demonstrate the nature and intensity of palliative care the professional carers Prevalence of symptoms in patients with end- need immediately following HIV diagnosis. Poster stage heart disease Funding source: President´s Emergency Plan for AIDS Veronese S1, Gallo G1, Valle A1, Oliver D J2 Relief, via MEASURE Evaluation. 1Faro Foundation, Palliative Care, Torino, Italy, Saiz Cáceres F1, Valentín R1, Alonso M T1, Martin E1, 2University of Kent, Centre for Work and Learning, Romero V1, Galea T1, Durán A1 Chatham, United Kingdom 1Hospital San Pedro de Alcántara, Palliative Care Support Team, Cáceres, Spain Aims: Patients severely affected by neurodegenerative conditions experience many symptoms, as well as The heart disease is a progressive illness associated with spiritual and psycho-social distress. The views of high morbility, mortality and functional deterioration. professional carers involved in the care of this patient Like in other non-oncological chronic diseases, there

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 173 Poster sessions (Saturday)

PE 2.S237 focused on the care of the imminently dying. This complex of problems medical, psychological, social, referral pattern limits the overall impact of a SPCS in an and in some cases and spiritual character dares at once. Palliative care for non-cancer patients in acute general hospital. Evidently, there is need for more Thirdly, economically effective system of rendering of specialised palliative care in Germany - Data education of hospital based colleagues in the role of services in comparison with the same hospice work from the German Hospice and Palliative Care SPCS, particularly in the earlier stages of the disease takes place. Fourthly, the continuity of various services, Evaluation (HOPE) 2002-2005 process. palliative service, a social service, polyclinic service which by common efforts can supervise a social Ostgathe C1, Alt-Epping B2, Lindena G3, Radbruch L4, Voltz situation more effectively takes place. R1 PE 2.S239 1University of Cologne, Palliative Medicine, Cologne, Germany, 2University of Goettingen, Palliative Non-cancer and cancer patients in palliative PE 2.S241 Medicine, Göttingen, Germany, 3CLARA, home care - What’s the difference? Kleinmachnow, Germany, 4University of Aachen, Progressive Supranuclear Palsy and Cortico- Aachen, Germany Ostgathe E1, Jaspers B1, Kern M1 Basal Degeneration - Atypical parkinsonism 1Malteser Krankenhaus, Palliative Medicine, Bonn, disorders with impications for palliative Aim: In order to learn more about non-cancer patients Germany medicine in specialised inpatient palliative care in Germany, patient data from the Hospice and Palliative Care Background: Even though most patients receiving Lorenzl S1 Evaluation (HOPE) was analysed. palliative care (PC) are cancer patients (CP), the number 1LMU Munich, Department of Palliative Medicine, Methods: Since 1999, a three months census is of non-cancer patients (NCP) having access to PC has Munich, Germany conducted annually in the majority of German been increasing over the last years. As a consequence palliative care units. Pooled data from 2002-2005 were research should focus on this patient group at an early Aim: Progressive Supranuclear Palsy (PSP) and Cortico- tested for differences (χ?) between non-cancer and stage of this process. This study explores the Basal Degeneration (CBD) are rare diseases with an cancer patients concerning symptoms/problems, characteristics of outpatient care for NCP, undertaken estimated number of 12.000 people affected in functional status and need for nursing care. by the specialised palliative home care service (SPHCS) Germany. However, the total number might be even Results: Overall 4182 patients were documented. Of in Bonn, Germany. larger since these patients are sometimes diagnosed as these 147 (3.5%) were non-cancer (NC) and 4035 Method: Retrospective analysis of the comprehensive Parkinson’s disease. Some patients with PSP or CBD (96.5%) cancer patients (C). In NC the most common data base of SPHCS, using all patient data sets from respond well to medication at the beginning of the group of diagnoses related to the nervous system 1/2006 to 12/2007. Data of NCP and CP were tested for disease but it lasts only for a limited time. Symptom (29.9%), followed by the circulatory system (20.4%) group differences concerning demographic and control is an important issue for these patients. and the lung (8.8%). The most common single epidemiological data, reasons for introducing and Respiratory related deaths are more common in these diagnoses were MND and chronic heart failure (8,1% finishing of SPHCS as well as place of death using chi patients since in Parkinson’s patients. each). NC patients were of lower functional status square (statistical significance at p<0.05 in all tests). Materials and methods: We report on patients with (ECOG: 3-4 NC 85% / C: 75.3%; p=0.009), suffered Results: Inclusion of 456 patients; 424 (93%) CP and PSP and CBD who were admitted to our palliative care more often from moderate to severe dyspnoea (40%; C: 32 (7%) NCP in an advanced stage of their disease. The unit from Mai 2006 until April 2008. 29%; p=0.004), weakness (92,3%; C: 84,5%; p=0.001) median age is 70 y (<70 y; NCP 31.1% /, CP 50.2%; Results: Within these two years there were 13 patients and tiredness (75.4%; C: 66.7%; p=0,03) and less from p<0.05). No significant differences in the reasons for admitted, 9 diagnosed clinically with PSP and 3 with nausea (17.1%; C: 28.9%; p=0.002), vomiting (8.2%; C: first SPHCS contact. Place of death (NCP 80%, CP CBD. The mean age was 72 ± 6 years (57-81 years). The 19.4%; p=0,001) or loss of appetite (55.5%; C: 67.9%; p= 52.6%, p<0.05 ; n=341) was significantly more often duration of treatment varied between 1 and 21 days (10 0,002). No differences were seen in pain und home in NCP than in CP. Discharge out of the SPHCS ± 6 days). The most common reasons for admission constipation. Symptoms and problems in the other before death was more frequent in NCP (reason: no were pain (n = 7), diarrhoea/ obstipation (n = 6), categories (nursing, psychological) were more frequent longer need for SPHCS; NCP 28.1%, CP 5.9%; p<0.05). swallowing difficulties (n = 5), sialorrhoea (n = 4), for NC patients, especially the need for support in the Conclusions: The distribution of NCP and TP of this dyspnoea (n = 4), depression (n = 4), sweating (n = 3), activities of daily life (90.3%; C: 72.8%; p<0.001) and SPHCS reflects the current situation in Germany in the myoclonic jerks (n = 2). Treatment options of these disorientation/confusion (32.1%; C: 17.2%; p<0.001). outpatient sector. The percentage of NCP that finished symptoms are comparable to the established methods Social problems were equally frequent. SPHCS with the reason ‘no longer needed’ raises the and drugs used for patients with malignant diseases. Conclusion: Even if palliative care issues of non- question whether the current range of SPHCS services Two of the patients died during the time at the cancer patients differ in prevalence to cancer patients covers the needs of NCP and if the multiprofessional palliative care unit. the necessity for specialised palliative care is revealed. teams should develop a wider scope of offers, more Conclusion: The overall number of non-cancer patients in appropriate for NCP. More detailed documentation of 1. The reasons for admission and the time at the specialised inpatient palliative care in Germany is far reasons for ending of SPHCS services is palliative care unit are not different between patients below compared to what should be expected. Only by recommendable. However, the overall stabilising effect with PSP and CBD and patients with malignant resolving this apparent mismatch and addressing the of SPHCS on home care situations is reflected in the diseases. specific needs an adequate provision of care of these comparatively high percentage of NCP that are enabled 2. Symptom control has been very effective in these patients can be achieved. to stay at home until death. patients with the knowledge of the underlying disease. 3. We emphasize that more patients with these diseases find their way to palliative care units. PE 2.S238 PE 2.S240

Specialist palliative care and non-cancer The organisation of palliative care in home - One PE 2.S242 patients: A retrospective review of referrals in of the most priority and economically defensible the acute hospital setting directions of development of the palliative help Palliative care for the patient with severe not oncological patients for Belarus (and the neurological damage - Practice in occupational O’Leary M-J1, O’Brien T2, Murphy M2 majority of republics of the former CIS) therapy 1Marymount Hospice, Palliative Medicine, Cork, Ireland, 2Marymount Hospice, Palliative Care Medicine, Yatskevich K V1 Othero M B1, Rocha C R1, Arini T1 Cork, Ireland 1The City Centre of the Palliative Help and the 1Hospital Premier, Occupational Therapy, São Paulo, Organisation of Sisterly Work, Committee on Public Brazil Introduction: Access to specialist palliative care Health, Minsk, Belarus services (SPCS) should be based on need and not Palliative care is an important reference for the disease type. Typically, the majority of patients referred Specificity of palliative care in home is the palliative assistance to the patient of severe neurological damage: to SPCS have malignant disease. help in a combination to sisterly leaving. And, sisterly quality of life, comfort and impeccable assessment and Aims: This retrospective review was conducted in two leaving at some stages of work with the patient is even treatment of pain end other symptoms are the main acute hospitals to examine referral patterns to the SPCS, dominating. It is a question of rendering of the goals of the assistance. The occupational therapist can with particular reference to patients with non- palliative help not oncological sick, and to ailing and contribute to this assistance by offering sensorial malignant disease. Each hospital has an established helpless people without guardianship, so-called not stimulus and introducing meaningful activities in the consultant-led SPCS. mobile patient who make about 5% from the general daily life of the patient. Methods: All new non-malignant referrals to the SPCS number of geriatric patients. These people cannot serve Aims: Identify the procedures, and their results, done over a three-month period were included. Data was themselves for whatever reasons. At the given patients by the department of Occupational Therapy in the analysed using excel and SPSS. also the medical problems demanding the help, assistance for the patient with severe neurological Results: The total number of non-cancer referrals to together with the psychology-social and spiritual help, damage in a Palliative Care service. the SPCS was 29/336(8.6%) and their mean age was 79 as a rule, take place. On the first visit the command of Methodology: Retrospective study, qualitative years of age. Patients had on average 2.3 co-morbidities. experts for an estimation on a place, both complexity of methodology, through the analysis of register in

sessions Stated reasons for referral’ included symptom control a medical problem, and complexity of a psychology- medical records. Twenty four medical records of 13(45%), and end-of-life care 11(38%). Over half the social situation always leaves. Thus, the home visiting patients were analyzed (delimited number by the referrals (56%) came from cardio-respiratory services. service is as though more socialised kind of the help, saturation criteria) between the period of May 2006 and

(Saturday) Twelve patients (41%) died within 1 day of referral, especially, in relation to elderly, lonely and to socially September 2008. A guideline was done for the 8(21%) died within 1 week, and 1(3%) patient died not protected categories of the population. collecting data and the analysis was done based on the Poster within 1 month. Four patients (14%) were subsequently Work of our Centre of the palliative help testifies that identification of the main thematic groups. discharged from the service, 4(14%) were discharged various categories of patients among which more than Results: The main procedures taken by the home and one patient (3%) transferred to the SPCS in- 60 % are not oncological patients very require the occupational therapist were: sensorial stimulus, patient unit. palliative care. inclusion of the patient in group work, splint Discussion: The overall proportion of non-cancer Among patients of our Centre the basic quantity is manufacture and adaptation for the bed positioning patients referred to the SPCS is low. We recognise that made by geriatric patients or the aged people having and adaptation to wheelchair, guidance and support to cancer patients may have multiple co-morbidities, some of chronic diseases. In this respect the palliative the caregivers and specified orientations to the nursing which contribute to their symptom burden and care care in home has variety of advantages before the team. The main therapeutical resources were: subtle needs. Nevertheless, referring doctors seem to be less similar help in the conditions of a hospital. First, the touch, music, massage, expressive activities. The results aware of the role of SPCS on the care of patients with volume of the necessary help can appear the patient were: increase of quality, duration and consistence of non-malignant disease. Referrals are often late and without change of a house situation. Secondly, the the responses to the stimuli; creation of new possible

174 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) ways of communication, such as blinking and gestures, dementia) an obduction has been performed. The with a responsibilities for care identified. and expressing feelings; tranquility in the moments of increasing number of obduction might be associated Results: The H2H Pilot Program started in Oct 2007, 95 anguish and anger; and also emotional support to the with a more concise management of communication patients have entered the program, 28 are still alive, and caregiver. with the patient and / or the relatives. 67 patients have died. Conclusion: Although the patient may have strict Conclusion: The CCs were attended by GPs 78(82%), district nurses disabilities, there should be room for testing and 1. Obduction of patients with neurodegenerative 89 ((94%), social workers 23 (24%), Spiritual 2 (2%), welfare; the above study showed how Occupational diseases provides the family and the clinicians with a carers 95 (100%). The preferred place of care (PPC) was Therapy in Palliative Care Services can offer new final diagnosis of the disease. home for 95(100%) patients. The preferred place of possibilities of attendance and care, contributing to the 2. Valuable tissue for research purposes can be obtained death was not discussed with nine patients(PPD) as it improvement of the quality of life. from cases with neurodegenerative diseases and might was not appropriate. Of the remaining 86 patients the enhance research and treatment of these diseases in the PPD was home for 52 and hospice for 34. future. Actual deaths of H2H vs National data in %: home (32 PE 2.S243 3. We emphasize a management plan to increase the vs 18%), hospice (52 vs 4%) and hospital 10 vs 58%). number of obductions of patients with When H2H patients were compared to the National Palliative care and COPD-related fatigue - neurodegenerative diseases dying on palliative care cancer deaths home deaths were increased Exploring the knowledge units. (p=0.04,Chi2 4.4), hospice deaths were increased (p<0.0001, Chi2 63) and hospital deaths were decreased Modlinska A1, Damps-Konstanska I2, Buss T1, Wajda B2, (p<0.0001, Chi2 60). Janiszewska J1, Lichodziejewska-Niemierko M1 PE 2.S245 The total number of days spent at home or a hospice 1Medical University of Gdansk, Department of Palliative was 5,889, 147 days (2.5%) were spent in hospital. Medicine, Gdansk, Poland, 2Medical University of Modelling specialist input in hospital inpatients Conclusion: CC results in increased death at home Gdansk, Department of Allergology, Gdansk, Poland with non-malignant palliative care needs: A pilot and hospices and decreased deaths in hospitals. Further work to assess quality of life, and health economics is Introduction: Traditionally in Poland, hospice care is MacKay H1, Keeley P W2 needed. An electronic summary care record is being focused on patients with malignant diseases However, 1Marie Curie Centre, Glasgow, United Kingdom, developed that can be accessed by all professionals. palliative medicine services have recently attempt to 2Glasgow Royal Infirmary, Palliative Care Team, involve patients with other chronic, life - threatening Glasgow, United Kingdom diseases, eg. chronic obstructive pulmonary disease PE 2.S247 /COPD/. In this group of patients both quality of life Aims: The project had the following principal aims: and life expectancy is poor. The Best Supportive Care of - To provide more systematic palliative care to patients Development, structure and function of a these patients means not only the clinical symptoms with non-malignant conditions community based urban palliative care control, but also the holistic, multiprofessional - To identify whether this model of care enhances consultation team (PCCT) approach. patient care/experience in this population. Aim: To investigate how the patients experience Methods: The project was a mixed qualitative and Wollner D I1, Walsh A1, Drayton M1, Broglio K1, Mandel B1, common symptoms of end-stage COPD. Our study quantitative study, using semi-structured inpatient Rudansky C1, Heller M1, Hiney B1 focused on the relationship between COPD - related consultations. Symptoms were assessed using self- 1Metropolitan Jewish Health System, Brooklyn, United symptoms, especially fatigue, and positive and negative reported 10 point scales (Brief Fatigue Inventory, States emotions /e.g. anxiety, depression/. Can COPD Modified Borg Scale, local protocol) wherever possible. symptoms be responsible for the level of COPD-related Interventions included: Virtually all Palliative Care services in the USA are fatigue? • Pharmacological manipulation hospital based. The Metropolitan Jewish Health System Methods: 30 patients suffering from COPD were • Psychological input (MJHS) Urban Palliative Care Consultation Team involved into study. The patients were examined with • Multi-professional assessment/referral (PCCT) is community based. The PCCT provides Charlson Comorbidity Index, VAS-pain, VAS- fatigue, • Hospice involvement Specialist Palliative Care assessments using a HADS and Multidimensional Fatigue Inventory /MFI/. • Family communication consultative model in New York City, Brooklyn, The information on the pharmacological treatment • Professional communication. Queens, the Bronx and Nassau County Long Island. was collected. The association between the level of Results: 21 patients were assessed. Following The PCCT is composed of Hospice and Palliative Care patient’s fatigue and COPD-related symptoms was exclusions (2 patients with concurrent malignancy, 1 certified professionals including a Physician, three evaluated using the multifactorial ANOVA analysis. with acute pain secondary to burns) 18 patients’ Nurse Practitioners, two Social Workers, a Chaplain and Results: COPD- related fatigue is very common and a records were analysed. Volunteer coordinator. The PCCT uses an multifactorial problems. The influence of COPD-related The majority of referrals were received from Respiratory Interdisciplinary Team (IDT) model and acts as the symptoms on the level of fatigue has been confirmed. and Cardiology wards (39% and 22% of patients, “eyes and ears” of hospital based PCCTs, Certified The major symptoms were dyspnoe, fatigue, respectively) and in all cases, a high incidence of Home Health Agencies, Comprehensive Cancer Centers depression, emotional and psychosocial problems. multiple comorbidities was noted (50% of patients and community based medical services. The average Conclusion: The suffering of patients dying from having 3 or more concurrent illnesses). Symptom daily census (ADC) has grown to ∼150 since January COPD is not mild than cancer patients. The patients burden was also significant, with most patients 2007. Most patients are in their sixth decade with express the need for palliation of symptoms and end-of- experiencing 3 or more. Median symptom scores were neoplastic diseases comprising 30% of the ADC. Fifty life support. This study showed the role of additional 7/10 for dyspnoea and fatique and 4/10 for pain - the per cent growth is projected for the upcoming fiscal factors and co-morbidities in the course of end-stage three commonest symptoms. year. The PCCT participates in postgraduate medical COPD. That palliative care is very important for Pharmacological intervention was extremely common education and will engage in healthcare system patients with fatigue and chronic uncontrolled (94%), as was referral to other professionals, and for research. The PCCT budget is funded by philanthropic symptoms so further follow-up and development ongoing specialist palliative care. organizations, the MJHS and billing of healthcare should be done. Qualitative data showed that the team assisted other insurance entities. The MJHS Urban PCCT provides teams in recognising & managing the end of life. continuity of care for patients and their famiiles seen Conclusions: This study’s results show much of the by hospital based PCCTs. PE 2.S244 input provided was concerned with assisting in recognition of the dying phase, management of Obduction of patients with neurodegenerative symptoms and support for relatives (and staff) at end of PE 2.S248 diseases dying at a palliative care unit life. The implication for palliative care services is that the demands of extending service provision to patients District nurses, palliative care and relationships Lorenzl S1, Lücking C1 with non-malignant disease represent a major with patients: A realist review 1LMU Munich, Palliative Medicine, München, Germany challenge which requires either a change in the service offered or new resources. Walshe C1, Payne S2, Luker K1 Aim: Only recently admission of patients with 1The University of Manchester, The School of Nursing, neurodegenerative diseases are more common at Midwifery and Social Work, Manchester, United palliative care units. The definitive clinical diagnosis of PE 2.S246 Kingdom, 2Lancaster University, International neurodegenerative diseases (e.g. dementias, atypical Observatory on End of Life Care, Lancaster, United Parkinsonian disorders) is often difficult and only The Royal Marsden Hospital2Home pilot project: Kingdom neuropathological examination of central nervous Developing a new model of co-ordinated system tissue might confirm the diagnosis. Therefore, complex care for terminally ill patients using Background: District nurses in the UK frequently obduction of patients with neurodegenerative diseases case conferences and information technologies provide much home based professional care to is strongly recommended. palliative patients and families. Their role is pivotal to Materials and methods: We report on the possibility Riley J L1 the delivery of current end of life policies. of obduction of patients with neurodegenerative 1Royal Marsden Hospital & Imperial College London, Understanding their role and how they enact this role is

diseases who died on our palliative care unit between Palliative Medicine, London, United Kingdom critical to the provision of a coherent, comprehensive sessions 1.1.2007 and 31.09.2008. palliative care service. Results: Within this time 52 patients with Around 500,000 people die in the UK each year 1, the Aims of study: This study aimed to review current

neurodegenerative diseases were admitted to our majority would prefer to die at home but nationwide research to understand how, why and when district (Saturday) palliative care unit. The most common 58% die in acute hospitals,18% at home, 17% in care nurses provide palliative care. neurodegenerative diseases at our palliative care unit homes, only 4% in hospices and 3% elsewhere. Study design and methods. Realist reviews facilitate Poster are amyotrophic lateral sclerosis (ALS), atypical Aim: The Hospital2Home (H2H) pilot program, based understanding of complex roles. They are theory Parkinson’s diseases like progressive supranuclear palsy on the Australian model is a case conference (CC) driven, using empirical evidence to support or refute (PSP), multiple system atrophy (MSA), cortico-basal organised for patients nearing the end of life. The aim underpinning theories of roles or programmes. First, degeneration, dementias, and rarely Creutzfeld Jacob’s is to increase the number of patients dying in their district nursing theories were identified. Second, 6 disease, Chorea Huntington or M. Fahr. In 2007 5 preferred place. electronic databases (1990-2008) were searched, patients with neurodegenerative diseases died and on 1 Method: Patients are referred to the H2H when no combining terms for district nursing and palliative care. of them with PSP an obduction has been performed further active treatment is appropriate, with the 63 studies were selected to review from over 3000 ‘hits’ which has confirmed the clinical diagnosis. In 2008 8 patients consent, a CC is organised in their homes. The and associated citation tracking. Third, studies were patients with neurodegenerative diseases have died so patient, carer, H2H CNS, GP, district nurse, and appraised, evidence extracted, and identified theories far and on 5 of them (ALS, MSA, PSP, 2 cases of palliative care nurse are invited. A care plan is agreed interrogated.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 175 Poster sessions (Saturday)

Results: Many theoretical aspects of the district nurse training and work experience. The number of patietns were end of life issues in 127 (66%, 95% CI 59-73%), role were supported by evidence including their receiving care in Korca Palliative care centre has and symptom management in 33 (17%, 95% CI 12- valuing of and commitment to palliative care and increased from 119 patients for 2004 in 155 patients in 23%). Sixty one percent of patients in the database died home as a care context. The most strongly supported 2007 and 149 patients from January - September 2008. during the hospitalization (115/190, 95% CI 53-68%). theoretical element concerned their relationship with The activities offered have extended from home visits Diagnoses included: cancer (70), chronic disease (46), patients. District nurses felt that forming relationships only, to respite care, day care, chemotherapy infectious disease (13), intracerebral hemorrhage (12), with patients was the foundation of palliative care, and administration and education. respiratory failure (12), cva (10). A survey of ED staff the medium through which other care is given. Patients Conclusion: Palliative care in Albania is offered will identify ways the PCCS can assist in meeting and carers valued a caring friendship. Nurses and mainly to cancer patients, as it has developed recently patients’ palliative care needs earlier in their patients may have different perspectives about their as a new specialty. This results from the increasing hospitalization. Patients admitted directly to the APCU relationships. Little research incorporated the views of number of palliative care teams in Albania, extension of from the ED resulted in greater cost avoidance. both nurses and patients on the district nurse role, or existing teams and multidisciplinary teams, continued Conclusion: In August, 2006 Summa Health System observed how roles and relationships were enacted in raise of capacities within teams and increasing number opened an APCU to expand services already provided by practice. of patients that seek care. an established PCCS. This brought a significant increase Conclusions: The district nurse role is important, but in PCCS requests from the ED. The availability of a patient and nurse interpretations of this role may differ. PCCS and APCU support ED physicians’ ability to Further research is required which incorporates nurse PE 2.S251 efficiently meet patients’ palliative care needs. and patient views, and which observes the district nurse Strengthening collaboration between the ED and the role in practice. Analysis of 24 hour specialist palliative care PCCS will result in more efficient protocols for meeting Funding: Research Council UK telephone advice both patient and health care provider needs in the ED. This study was funded by the Summa Foundation. Powell A J1, Bentley A1, Downs F1 PE 2.S249 1Strathcarron Hospice, Clinical, Denny, United Kingdom PE 2.S253 Recognising the hidden volunteers in palliative care: A survey of hospice trustees in the United Telephone advice is an important aspect of palliative Patient and family preferences regarding Kingdom care for health professionals and patients/carers. At our accommodations within palliative care units 24 bedded independent hospice 24 hour specialist Turner M1, Payne S1 palliative care telephone advice is available, but prior to Werni-Kourik M1, Heidegger D1, Seemann H1, Hoernlein B2 1Lancaster University, Division for Health Research, this study it was unclear how well this resource was 1Wilhelminenspital, Hospital Palliative Care Support Lancaster, United Kingdom utilised. Monitoring the nature and uptake of this Team, Vienna, Austria, 2Wilhelminenspital, Medical service has highlighted the needs and access of Head Office, Vienna, Austria Background: Independent, charitable hospices in the public/professionals to specialist palliative care United Kingdom (UK) rely heavily on volunteers to telephone advice. Aims: The interdisciplinary hospital palliative care perform diverse and important roles in supporting the Aim: To audit and analyse the nature of telephone support team at the Wilhelminenspital, the second provision of palliative care. Trustees are a group of advice. largest hospital in Vienna, supports patients with volunteers who are responsible for the governance and Methods: A nine-month prospective analysis of incurable diseases within all departments. More than strategic direction of hospices. Very little previous telephone advice given by the hospice was undertaken. 50% of those palliative patients who are attended by research has focused on hospice trustees; therefore a Information gathered included: telephone this team are able to stay at home after discharge, but a national survey was undertaken to explore their profile, caller/receiver details, diagnosis, advice sought, few of the patients need special treatment in a palliative roles and views. outcome and timing of call. care unit. In this study we wished to discover what Methods: A 27-item questionnaire was developed, with Results: 168 calls were documented. Among the individual preferences palliative care patients and questions focused on motivation, recruitment and callers, 46% were carers, 8% patients and 42% health family members have concerning the accommodation selection procedures, length of time in post, specific professionals (52% primary care, 35% secondary care). in a palliative care unit. roles and responsibilities, training, appraisal, future Medical and ward nursing staff dealt with the majority Methods: Between 1st April and 30th September 2008 plans, and the extent to which trustees felt valued, of calls (43% and 51% respectively). Advice regarding we asked 93 patients and 47 family members for their fulfilled, supported, and part of their hospice. symptom control accounted for most calls (63%), preferences. 47 female and 46 male patients and 47 Demographic data were also collected. The followed by pharmacology or syringe driver advice family members (35 female, 12 male) were interviewed questionnaire was sent to 2015 hospice trustees in the (24%). Other issues including admission requests, in a standardized questionnaire with the following UK; 610 were completed and returned (a response rate social and equipment needs and bereavement made up options: single room, double room or more than 2 beds of 30.3%). Numerical data were analysed for the remainder. 55% of calls required palliative care in the patient’s room. The median age of the patients frequencies and cross-tabulations using SPSS 14.0 for follow-up action (usually community follow-up was 69 (29 - 92), the median age of the family members Windows, and open-ended comments were subjected review). Just 10% of calls referred to patients with a was 60 (28 - 88). to qualitative thematic analysis. non-cancer diagnosis. 54% of calls occurred out of Results: 44% of patients who were to be transferred to Results: Two thirds of respondents (66.4%) were male hours (43% weekend calls), and 74% were about a palliative care unit preferred a single room, 43% a and over 95% were white British. Over 62% of patients known to the hospice. double room, 5% a room with more than 2 beds and respondents were aged 60 or over and only 2% were Conclusion: Analysis of the advice provided important 8% had no preference. There were differences between under the age of 40. Almost half (47%) were retired, and information on the present need and uptake of male and female patients: most male patients wished to over 92% were from professional or senior specialist palliative care telephone advice. Overall the stay in a double room (50%), female patients preferred management occupations. Nearly two thirds (62.3%) uptake of advice was lower than expected and in a single room (53%). 43% of the family members were personally invited to join the Board, and only particular patients not known to the hospice and those wanted a single room for the patient, but 53% desired a 5.7% answered an advertisement. The majority of with a non-cancer diagnosis poorly utilized the service. double room for the patient and only 4% wished a respondents felt highly valued, supported and fulfilled In response to these issues a questionnaire is being multi-bed room for the patient. in their roles, and felt part of their hospice. However, conducted to primary and secondary health Conclusion: This investigation shows that half of only 19% had ever had a performance appraisal, whilst professionals to highlight the provision of specialist palliative care patients preferred a single room in a over 60% said they would like one. palliative care telephone advice to these groups of palliative care unit and most of the family members Conclusion: Current trustees are typically older, patients. wished a double room for the patients. The evaluation retired, professional men, and UK hospices may benefit may be helpful for those who plan to establish a from greater diversity amongst trustees. There is also palliative care unit, especially in the German speaking scope for the provision of more formal support for PE 2.S252 countries (Germany, Switzerland and Austria) where trustees, as the high demand for regular performance there is a growing trend to plan and construct palliative appraisals is not currently being met. Enhancing palliative care services in the care units with only single bed rooms for the patients. emergency department of an acute tertiary care hospital PE 2.S250 PE 2.S254 Radwany S1, Wilbur S2, Soltis M1, Manalac T1, Albanese T3, Palliative care for cancer patients in Albania Bradshaw J2, Worstall C3 Who you gonna call (in an emergency at home)? 1Summa Health System, Hospice and Palliative Care Do community palliative care patients and their Laska I1, Prifti M1, Koleci G1, Xherahu O1 Services, Akron, United States, 2Summa Health System, relatives know who to call in an emergency? 1Korca Palliative Care, Korce, Albania Emergency Medicine, Akron, United States, 3Summa Health System, Internal Medicine, Akron, United States Taubert M1, Phillips J2 Aim: The purpose of this material is the presentation of 1University Hospital of Wales, Cardiff, United Kingdom, the development of palliative care for cancer patients in Aim: This study aims first, to identify trends in 2Morriston Hospital NHS Trust, Palliative Medicine

sessions Albania, focusing on Korca region. (South East part of palliative care consults and Acute Palliative Care Unit Department, Swansea, United Kingdom Albania). (APCU) admissions originating from the Emergency Methods: The material used for this abstract is received Department (ED); second, to assess ED staff’s Background: There is increasing emphasis on moving

(Saturday) from the data of work with cancer patients in several perceptions and needs regarding palliative care services; palliative care into the community and providing institutions in Albania, such as: Onclogy Hospital and third, to explore some of the financial implications support to patients wanting to be at home. Our Poster Tirana, Ryder care Albania, in Tirana and Durres of these referral patterns. community palliative care team wanted to evaluate branches and Korca Palliative care for the data of South Methods: This study includes a retrospective analysis whether patients and relatives know who to call in an East region. The patients that have received care in of Palliative Care Consult Service (PCCS) and hospital emergency situation, when at home. This patient group Korca Palliative care centre have been studied from administrative databases, measuring trends over 5 years is very prone to emergencies. January 2004 till September 2008. and a survey of ED staff (physicians, nurses, and social Methods: We conducted a standards-based prospective Results: The number of palliative care teams working workers). audit on 30 palliative care patients in the community. in Albania has increased over the years. There has been Results: ED requests for Palliative Care Consults The aim was to establish whether patients and relatives an increase also in the number of team members in increased following the opening of the APCU. In the 3 knew who to call in an emergency at home. A standard Korca Palliative Care Centre from 8 team members in years prior to its opening, the ED requested 13 consults. was agreed at our local audit meeting and audit January 2004 in 10 in September 2008. Staff capacities This increased to 23 in 2006, 101 in 2007, and 51 committee approval was sought. Data was collected by have improved through continuous professional through mid-July, 2008. Major reasons for consults community nurse specialists and doctors in palliative

176 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) care using an audit form (proforma) whilst visiting unpredictable, exacerbations of their disease. To 27,000 new cases of cancer are reported affecting 1.5% patients at home. Patients and carers were asked provide adequate palliative care to this population of the population.1 However a shortage of Doctors, whether some specific skills are necessary. wide geographical distribution, and poor transport a) they knew who to call in an emergency and Methods: In March 2007 a group of European systems leads to many patients especially in rural areas b) to explain who they would call in such an event. geriatricians involved in geriatric palliative care (GPC) experiencing severe uncontrolled symptoms. Results: Of 30 patients questioned, 10 (33.3%) did not met the first time to discuss the current situation of Hospice Africa Uganda developed a community know who to call in an emergency and did not have a GPC in Europe. This group became an official volunteer worker programme where local villagers are list of numbers. 20 answered that they knew who to call recognized group of the EUGMS and met for the fourth trained to identify patients with palliative care needs. and answers included district nursing service, family time in September 2008. The volunteers refer patients to the hospice and provide doctor and emergency number (999). Results: The group decided some rules for the basic care and support for patients and families. A Conclusions: It was decided that an intervention was participants (maximum 2 or 3 per country): to be training course with ongoing support has resulted in 45 necessary, in the form of a list of phone-numbers in the European geriatricians involved in GPC, to be volunteers currently practicing. The volunteers receive patient-held district nursing notes and that recommended by Geriatric Society of their country, to no payment, except for a bicycle enabling them to patients/carers should be alerted to this list during all participate actively and to attend regularly to the reach remote rural areas. The aim of this study was to future visits and phone-calls. There is a lot of available meetings. Main goal of the group is to establish a evaluate the impact of the volunteer programme on data that community palliative care is inadequate European network of physicians to improve GPC. patients, hospice staff and volunteers. across many industrialised countries. A simple Secondary goals are to establish a link between Methodology: A qualitative methodology using semi intervention in the form of explanation and an palliative care and geriatric societies on national and structured individual and group tape recorded emergency phone-list can make all the difference to European level, to offer advice concerning GPC to interviews was adopted for the study. A purposive this vulnerable group of patients, when unexpected EUGMS and national geriatric societies and through sample of a volunteers (22), patients (11) and hospice events happen out-of-hours. We will also present the EUGMS to European policy makers, governments and staff involved with the programme (2) were invited to second stage of the audit collected 6 months later (thus health care planers. Further goals are to communicate a participate in the study. Data was analysed for emerging completing the audit-cycle) to show whether this definition and specificities of GPC, to make a survey themes using thematic analysis. community phonelist intervention has been successful about existing structures in GPC, to establish a research Results and discussion: The volunteers were seen to and these results will form part of the poster network for GPC, to collect and disseminate evidence be providing a positive impact to patients in helping presenation proposed for the EAPC conference in and guidelines, to promote teaching and training in them to receive appropriate care and intervention from Vienna. GPC and to find financial support. A project of the hospice team; additionally they were providing definition will be presented and the survey will be send basic nursing care, support and advice to patients and soon to participants of main European countries. their families. For volunteers, the role increased their PE 2.S256 Conclusion: To achieve all the different goals during confidence by providing care for their community. the next years, European geriatricians are going to need Additionally for the hospice team it enables patients in Answering to the need to manage, collect and a lot of energy and support from the different European rural areas with palliative care needs to be identified process clinical data in a home palliative care societies and networks. and provided with appropriate care. This paper will unit: A web-based case sheet discuss the findings from the study and provide an overview of the structure of the programme. Vicario F1, Piazza S2, Prino A2, Longoni C2, Poletti S2, PE 2.S258 1 Makokha T Africa no longer willing to suffer in Alabiso O2 silence. Cancer World 2006 Dec- Jan Special Issue 42-45 1A.S.L NO, Algology and Palliative Care, Novara, Italy, Model of communication between palliative care 2A.O.U. Maggiore della Carità, Oncology and Pallitive services and primary care emergency and Care, Novara, Italy continued services PE 2.S260

Aim: The management of clinical data of a home care Valdes Gomez C1, Fernandez Rodriguez-Lacin J M1, Vallina Global need for palliative care and palliative unit has to be considered one of hardest question to Blanco P1 radiotherapy solve; manage, collect and process clinical data is a 1SESPA (Asturias Health Service), Gijon, Spain prioritarian question that has to be solved simplest as Salminen E K1 possible, to allow the operators to be through keeping Objective: To describe the model of communication 1University of Turku, Radiation Oncology, Turku, less time as possible. between the In-Home Supportive Care Service and the Finland Methods: We projected and built a web-based cese Emergency Primary Care Services in the Spanish Health sheet, using the internet to connect real time operators Area of Gijón.The In-Home Supportive Care is delivered The global burden of cancer will increase from 10 between they all and with the head office, to simplify by primary care professionals specialized in providing million to 24 million in the next 50 years; more than news exchange, management of daily plan, drug and medical care to patients with terminal or complex half of cancer cases will be diagnosed in low income tools distribution and processing data. Every operator chronic diseases. The supportive care is undertaken nations, and a large proportion of these patients will works with a notebook connected to the website that from 8:00 to 15:00 from Monday to Friday, whereas have incurable disease at the time of diagnosis. Based support the case sheet. physicians of the Primary Care Emergency Services on these statistics, palliative care will remain the most Results: The project, now in start-up phase, will allow cover the service during the rest of the time. A palliative important intervention in oncology worldwide. the home care unit’s oparators to keep communication care integral program allowing an agile and efficient Because palliative care specialists can reach only a small between they all, trough real time data exchange; an communication between both health care teams was proportion of these patients, feasible solution is to automatic email delivery system will ensure connection developed, to provide flexible care and integration of incorporate palliative care principles as a standard of with people (other than the palliative team) involved in services between acute care centers and home support medical care for all health care providers. This is needed patient’s care; moreover, the system allows to process teams. It’s specially directed to patients who are either to raise awareness of the need to minimize suffering, of automatically clinical data, to simplify assessment dying or under unstable situations in whom pain, the current recommendations and trends in palliative procedures and research activities. dyspnea, vomiting, agitation or other critical symptoms care and of the role of radiotherapy in palliative cancer Conclusions: In our opinion the web-based case sheet are expected to emerge.The integral program is aim to treatment. Great variability exists in the integration of could be an important instrument to emprove deliver by fax a standardized medical report from the palliative care within the wide range of health care assistance’s quality, allowing to reduce spending time In-Home Supportive Care team to the emergency systems worldwide. In minority of countries some for data management and to encrease clinical activity; primary services. This report contains a first section integration within existing health care systems is in moreover, an automatic system to manage and process with patient personal details. The second includes place, and have been achieved recognition within clinical data could be very useful to make research clinical information with special emphasis in the health care policy. This does not come close to meeting activity faster and easier, minimizing too the risk of oncologic history. The current medical treatments are the global need for palliative care. Access to palliative missing data. We think that this operative system could described in the third section. The last and largest care is closely related to quality of the health care be purposed for extended use in palliative home care section is used to describe the expected patient system. Barriers may be found in low prioritization of units. incidents such as pain crisis, dyspnea, agitation or palliative care in health care policy and in healthcare death. The specific treatments recommended by the education. experts in palliative care, who have a complete To provide comprehensive care, multidisciplinary PE 2.S257 knowledge of the evolution of the patient, are also approach is needed to utilize the available targeted described in this section. treatments and to ensure cost effective ethically sound Geriatric palliative care interest group of the Conclusions: In 2007 we treated 150 patients that died approach for cancer patients during each stage of the European Union Geriatric Medicine Society at home. Standardized reports concerning 90 of the 150 disease. Quality management and quality systems need (EUGMS) patients were sent to the emergency primary services. to be incorporated to all levels of care. Preliminary data suggest that most emergency IAEA has produced a document based on consultant Pautex S1, Curiale V2, Pfisterer M3, Rexach L4, Ribbe M5, physicians have a very positive opinion on this meeting to review the global efforts in providing Van Den Noortgate N6 program, and consider it very valuable for the proper palliative care along cancer treatment focusing on 1Division of Palliative Medicine, Rehabilitation and in-home management and treatment of terminally ill palliative radiotherapy services and practice.

Geriatrics, Collonge-Bellerive, Switzerland, patients in emergency situations. sessions 2Gerontology-Galliera Hospital, Acute Care Elders Unit, Genoa, Italy, 3Klinik für Geriatrie, Evangelisches PE 2.S261

Krankenhaus Elisabethenstift, Darmstadt, Germany, PE 2.S259 (Saturday) 4University Hospital Ramon y Cajal, Coordinator A specialised palliative care unit in a nursing Palliative Care Unit, Madrid, Spain, 5University Medical Reaching out with palliative care: An evaluation home - Organization and patient characteristics Poster Center, Amsterdam, Netherlands, 6University Hospital, of a community volunteer programme in Dpt of Geriatric Medicine, Gent, Belgium Uganda Bollig G1, Nordstrønen Å1, Øren A K1 1Bergen Red Cross Nursing Home, Palliative Care Unit, Research aims: Populations are ageing at increasing Jack B A1, Merriman A2, Birakurataki J2 Bergen, Norway rates. As more people live longer, new challenges are 1Edge Hill University, Faculty of Health/ Evidence-based emerging. The dying trajectory of frail, older patients is Practice Research Centre, Ormskirk nr Liverpool, Aims: To describe the organization and patient quite different from this of younger patient often dying United Kingdom, 2Hospice Africa Uganda, Kampala, characteristics of the specialized Palliative Care unit at from cancer. The older patients often accumulate Uganda Bergen Red Cross nursing home. multiple chronic medical conditions and geriatric Background: This unit has been established in the syndromes and present multiple, frequently Background: In Uganda in each year approximately year 2000 and its aim is to serve especially elderly

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 177 Poster sessions (Saturday)

people in need for Palliative Care. It has 8 short-term consultation service worked in partnership to develop PE 2.S265 places for palliative patients and 6 long-term places for an intervention to improve referral services for lung nursing home patients, where most also need skilled cancer patients. The purpose of this study was to Barriers to the development of palliative care in Palliative Care and medical supervision. The patients develop, implement and evaluate a case management Western Europe both come from their home or the hospital and are tool to support collaborative practice and effective admitted by recommendation of a physician. transitions in palliative care services for Stage 3 & 4 Lynch T J1, Centeno C2, Rocafort J3, Clark D1 Methods: All patients admitted in 2007 were registered lung cancer patients. The objectives were: 1Lancaster University, International Observatory on End including number of patients who were admitted, age, 1)To assist the cancer centre health care team in of Life Care, Lancaster, United Kingdom, 2European gender, diagnoses, length of stay etc. decision making regarding the most appropriate Association of Palliative Care Task Force on the Results: 84 patients were admitted to the Palliative palliative care service provider; Development of Palliative Care in Europe, Navarra, Care unit in 2007. 51 were female and 33 male, average 2) To support a primary health care model for Spain, 3European Association of Palliative Care Task age was 74.5 years. 75 patients died during their stay, 9 community palliative care service delivery; and Force on the Development of Palliative Care in Europe, were discharged to their own home, and 8 were 3) To improve continuity and communication among Extremadura, Spain transferred to a long-term place in a nursing home. health care providers, patients, families and services Some patients had more than one stay and were re- across sectors and settings of care. Background: The ‘Eurobarometer Survey’ produced admitted after a period in their own home. Most Methods: This intervention study consisted of the by the EAPC Task Force on the Development of patients had a cancer diagnosis and many suffered from development and implementation of a clinical decision Palliative Care in Europe compiled comprehensive pain and other troublesome symptoms. making algorithm and utilized mixed methods for information on the provision of palliative care across Conclusion: Although many elderly people do need evaluation including focus groups, surveys, and the European region. This paper focuses on one part of Palliative Care, the majority of the patients admitted to interviews with interprofessional team members. Pre- the survey relating specifically to 22 countries in our specialised Palliative Care unit were cancer patients. intervention and post-intervention chart audits were Western Europe. Possible causes for this observation are that the conducted to track referral patterns and utilization of Aim: To identify barriers to the development of Palliative Care needs of elderly non-cancer patients are the tool. palliative care in Western Europe. often overlooked and that elderly cancer patients have Results: Study findings will be presented Method: A qualitative survey was undertaken amongst more often complex problems, which may lead to a demonstrating the benefits of and barriers to a boards of national associations, eliciting opinions on higher frequency of admissions to a specialised partnership approach to improve case management for opportunities for, and barriers to, palliative care Palliative Care unit. transitions in lung cancer care. Health care system development. By July 2006, 44/52 (85%) European issues will be addressed. The study is in progress and countries had responded to the survey. We report here analysis will be completed by April 2009. on the results from 22/25 (88%) countries in Western PE 2.S262 Conclusion: It is expected that an interprofessional Europe. primary health care model will address gaps in health Analysis: Data from the Eurobarometer survey were Dying at home - What can Primary Home Care services for advanced lung cancer patients by analysed thematically by geographical region and by (PHC) teams in Austria contribute? improving clinical decision making regarding the the degree of palliative care development. appropriate provider and setting of care and improving Results: From the varied data contained within the Wegleitner K1, Heimerl K1, Pleschberger S1 continuity of care. Recommendations for policy and Eurobarometer, we identified six significant barriers to 1Palliative Care and Organizational Ethics / University practice will be discussed. the development of palliative care in Western Europe: Klagenfurt, Vienna, Austria (Funded by CIHR End-of-Life-Care for Seniors Team) (i) lack of palliative care education and training programmes Aim: Whereas the support for the wish to die at home (ii) lack of funding is usually considered to be the task of specialized PE 2.S264 (iii) lack of coordination amongst services palliative care teams, this study directs attention to (iv) prejudice relating to the use of opioids PHC, which is provided by certified nurses and health Charting the historical development of pioneer (v) lack of public awareness and government care assistants. The qualitative study, commissioned by palliative care services across Europe: A review of recognition of palliative care as a field of specialisation the Austrian Red Cross, is devoted to the following the literature (vi) uneven palliative care coverage. research questions: What resources and barriers for Conclusion: Despite huge variations in the levels of palliative care are there in PHC? What changes are Lynch T J1, Centeno C2, Rocafort J3, Clark D1 provision across many countries, data collected in the necessary in organizational structures and framework 1Lancaster University, International Observatory on End Eurobarometer survey reveal many common barriers to conditions within and for PHC? of Life Care, Lancaster, United Kingdom, 2European development of palliative care in Western Europe. Methods: 3 PHC teams in different Austrian regions Association of Palliative Care Task Force on the were included in the qualit. research. Sample: 9 qualit. Development of Palliative Care in Europe, Navarra, interviews with home care professionals. 10 qualit. Spain, 3European Association of Palliative Care Task PE 2.S266 interviews with different cooperation partners. 3 Force on the Development of Palliative Care in Europe, interprof. group discussions with 44 caregivers. 14 after Extremadura, Spain Paediatric palliative home care by paediatricians death interviews with family carers. Data analysis: in their own practice: An example of general qualit. content-analysis and grounded theory. Background: Since St. Christopher’s Hospice in palliative care delivery Results: PHC increasingly called upon to provide care London was established as the first ‘modern hospice’ in for palliative patients. Barriers for palliative care at 1967, hospice and palliative care have spread Vedder A E1, Jünger S1, Pastrana T1, Pestinger M1, Radbruch home are seen in: the absence of framework conditions throughout the countries of Europe. L1 and resources in the health care system; too rigid Aim: This paper charts and summarises the historical 1RWTH Aachen University Hospital, Department of organizational structures that allow too little flexibility development of pioneer palliative care services across Palliative Medicine, Aachen, Germany in care; the self-image and care practices of PHC that the continent by identifying the date and the name of are rooted in old paradigms; lack of established routines the first service to be established in each European Aims: Non-specialist palliative care, as it is delivered by of cooperation with palliative care teams and family country. general practitioners, is a basic component of a doctors; no established routines in ethical decision- Methods: Data on the historical development of comprehensive palliative care infrastructure. Currently making processes; lack of palliative care know-how. pioneer palliative care services across Europe were palliative care networks for children and adolescents are Resources: the individual commitment of home care gathered from a number of sources: published works, a recognized as a distinct entity of care. The aim of this nurses for their patients. systematic review of hospice and palliative care study is therefore to examine potential barriers, Conclusion: PHC must move beyond tradition publications, and individual country reports compiled facilitations, and the professional self-image of patterns of care with respect to both health care policies by the EAPC Task Force on the Development of paediatricians in their own practice with regard to and the self-image of PHC. This means making a Palliative Care in Europe. paediatric palliative care. transition from care concerned solely with the bodily Results: Data relating to the historical development of Methods: Based on qualitative expert interviews, a requirements of the person requiring care to a systemic pioneer palliative care services across Europe was standardised questionnaire was developed and pilot- understanding of care that is, on the one hand, focused identified in 44/52 (85%) European countries surveyed. tested for content validity and comprehensibility. The on the recipients of the care (oriented to the needs of With the exception of the United Kingdom, pioneer survey has been developed and performed in close the family system) and, on the other, takes into full palliative care services began to develop across Western cooperation with the regional professional association account the organizational cooperation that is Europe in the mid 1970s. In the countries of Central of paediatricians. The questionnaires were completed at necessary. and Eastern Europe and Commonwealth of the regional quality circles. Independent States, there has been a steady Results: The results show a high disposition on part of development of pioneer palliative care services since the paediatricians to commit themselves to palliative PE 2.S263 the political upheaval of the 1990s. There are a number care, and the majority of respondents regard palliative of European countries in which more than one care as part of their profile. Main barriers for the Case management for transitions in lung cancer ‘pioneer service’ emerged at approximately the same implementation are time restrictions and financial care time, resulting in much debate about the legitimacy of burden, sole responsibility without team support, as

sessions the ‘original’ pioneer service. The range of pioneer well as formal requirements such as forms and Legault F1, Locke L2, Gravelle D3, Kachuik L4, Mutterback palliative care services across Europe, and the order in prescriptions. Major incentives and facilitations are E5, Crabbe K1 which each has been established is highly diverse. support by local specialist services (e.g., home care 1

(Saturday) University of Ottawa, School of Nursing, Ottawa, Conclusions: Charting the historical development of nursing service), access to a specialist consultation Canada, 2Bruyere Continuing Care, Care of the Elderly, pioneer palliative care services across Europe provides a team, as well as the possibility of exchange with Poster Rehabilitation & Palliative Care, Ottawa, Canada, broad summary of variations over both time and colleagues. 3Bruyere Continuing Care, Regional Palliative Care location and poses a number of salient questions Conclusions: A local network of specialist support by Community Services, Ottawa, Canada, 4The Ottawa concerning the future development of palliative care phone and on site is necessary in order to facilitate the Hospital, Palliative Care, Ottawa, Canada, 5The Ottawa services across the continent. implementation of basic palliative care by Hospital, Cancer Symptom Management Collaborative, paediatricians in their own practice. Further research is Ottawa, Canada needed in order to examine whether the results can be extrapolated to general practitioners and adult palliative Aim: Utilizing the Pan-Canadian Gold Standards for care. Case Management for Hospice Palliative and End-of- The survey is part of the accompanying research of a Life Care at Home, an outpatient cancer care program, a pilot project funded by the Department of Health of teaching hospital and a community-based palliative North-Rhine Westphalia, Germany.

178 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

PE 2.S267 PE 2.S269 understand how social factors, processes and changes can influence lives. Speciality of doctors working in palliative home “Convenience Store!” - Improving access to This fall a study, which focuses on social workers in care in Estonia palliative care medicines palliative care, will be accomplished. The research question is: what are good examples of early and Suija K1, Suija K2 Simpson S1, Groves K1 structural involvement of social workers in psychosocial 1The Estonian Cancer Society, Tartu, Estonia, 1Queenscourt Hospice, Southport, United Kingdom care within the palliative care in the Netherlands and 2University of Tartu, Tartu, Estonia which recommendations for improvement can be Background: Many people prefer to die at home but extracted from these examples for all professionals Aims: The aims of this study were: are unable to do so. Approximately 26% of patients die involved? (1) to find out what is the speciality of the doctors at home, yet many more would choose this as their This research will focus on how psychosocial care is working in palliative care; intended place of care. The difficulty obtaining organised around the patient. The researchers will (2) how many years have they worked in palliative care; medicines required to control dying patients’ search and describe five good practices in different and symptoms in the community setting may be a settings: a general and academic hospital, a hospice, an (3) how many years have they worked as a doctor on contributing factor. elderly home and a home care situation. In each setting the whole. Method: Through collaboration between specialist semi-structured interviews will be held with different Methods: Telephone interviews were made to the palliative care services and local NHS Primary Care professionals providing psychosocial care. Based on the doctors working in the palliative home care system in Trusts a scheme was introduced to overcome the interviews a case description will be written. June 2008. This system was launched 11 years ago and difficulties in obtaining palliative care medicines. From these case descriptions several recommendations is specialized for advanced cancer patients. We inquired Conclusion: This presentation will outline the will be extracted for all professionals involved in about the age of the doctors, their speciality, number of successful implementation of a scheme in which psychosocial help and care. The definitive product will years worked in palliative care and as a doctor on the community pharmacies were contracted to stock an be a practical instruction that can be used to improve whole. The SPSS Base System for Windows 10.0 was agreed list of palliative care medicines. It will focus on psychosocial care in the palliative phase. used for data analysis. the process and how to overcome the barriers of Results: The study group was 17 doctors, 11 (65%) of implementation and the informal evaluation of them were women and 6 (35%) were men. The mean community health professionals utilising the scheme. PE 2.S272 age ± standard deviation (SD) of the doctors was 58 ± 11 years. The PIVOT project - Implementation of a new The most prevalent speciality of these doctors was PE 2.S270 nursing role in healthcare institutions for surgery, followed by internal and general medicine. specific patient groups The number of years worked as a doctor on the whole Reviewing hospice services - An inclusive varied from 11 to 58 and the mean number ± SD was approach Krol R1 32.65 ± 13.03. 1Integraal Kankercentrum Oost, Nijmegen, Netherlands The number of years worked in palliative care varied Stevens A M1 from 1 to 11 and the mean number ± SD was 6.71 ± 1Dorothy House Hospice, Nursing Directorate, Bradford Aim: To enhance a systematic approach to palliative 0.57. on Avon, United Kingdom care as a way of improving quality of care. Conclusions: There are different specialists working in Methods: A new nursing role (PIVOT-nurse) is palliative care thus they differ from their background, Organizational review is necessary to provide evidence introduced in five care institutions participating in the knowledge and skills. Continuous training-courses can of excellence in care provision and to determine future project; for people with intellectual disabilities (2), harmonize knowledge and give basic information. development. psychiatric disorders (1) and nursing homes for the However, there is an increasing need for specialization The same method has been used successfully for 3 elderly (2). for palliative care. The doctors working in this system major reviews of specific hospice services: Two nurses per institution received a five day training have been worked quite a many years already. So they • Terms of Reference agreed at Board level to act as a ‘palliative care consultant’. The training was should be quite experienced in medicine, and • Review process included all team members focussed on symptom management, decision making, motivated, as they have been working in the same throughout coaching- and communicationskills. system for many years. • Baseline established of current service provision The nurses play a connecting role between their • Extensive consultation with stakeholders and service specific field of expertise and palliative care services like users consultation teams and hospices. PE 2.S268 • Identification of relevant national and local The PIVOT-nurses were assigned to a specific task for initiatives about 4-6 hours weekly, namely: Role of palliative care heart failure nurse • Examination of other service models • to actively identify clients who need palliative care, in specialist • Formalised report and recommendations with service their workarea; development plan • to guide the team of caregivers involved in taking a Telfer R1, Littlewood C1 • Feedback to all participants on outcomes of review. pro-active approach in assessing care needs and 1St Helens & Knowsley Hospitals, Specialist Palliative Each team divided into working groups with specific problems; Care Team, St Helens, United Kingdom objectives and a time plan. The whole team re-grouped • to promote the use of state-of-the-art methods, at the interim stage and for final presentation of screening instruments and knowledge; Background: Heart failure is a non-curative, highly findings and development of proposals. The groups • to provide coaching, advice and support in the prevalent and often symptomatic and debilitating used a variety of methods both qualitative and planning and coördination of care; condition. It is recognised the importance of the quantitative, employing national tools when available • to promote a timely consultation of a palliative care availability of specialist palliative care services to or devising local audits approved by the hospice audit expert team when necessary. patients with non-malignant disease, including heart group. Their functioning was monitored during and after a failure. The was established in March 2008 in Whiston Each review provided clear evidence of quality services one year pilot phase using registrations of activities and and St Helens Hospitals and St Helens Primary Care with an identified plan for further development. patient variables and evaluation forms (likert-scale Trust. Additional hidden benefits of a totally inclusive review type). Aims: The aim is to promote palliative care to patients included team building opportunities, skills Results: In the project the following results will be with heart failure, and so reduce hospital admissions, development, a willingness to receive and act upon produced: increase home deaths, ensure patients have a open criticism, a renewed interest in research and • a description of the PIVOT-function, including management plan, and so improve patient care and service development and a wider organisational competencies required; quality of life. understanding of each service and the challenges for • an elaborate description of a five-day training course The role each team. Due to the inclusivity of the process and a for the role of PIVOT-nurse; One day a week is spent working with the Hospital ‘bottom up’ approach to shaping services for future • evaluative data concerning perceived contribution to Specialist Palliative Care Team on in-patient wards, and delivery, there was a much greater understanding for quality of care (by april 2009); 2 days a week with St Helens Community Heart Failure the need for change and ownership of this change. All • a model for implementation of the function in Nurse Specialists. Cross boundary working provides of this was achievable through a hospice culture of healthcare institutions. continuity for patient care, and support and advice to support and a belief in the continual improvement of Conclusion: Preliminary evaluations show that the health care professionals. The role involves varying services. implementation of the ‘PIVOT-nurses’ is feasible and amounts of involvement depending on the situation Whilst reviewing services can be time consuming there regarded very positively by their co-workers. and close links with the local hospice. are some real benefits in involving the whole team in Implementing the role this process.This approach has become accepted, and Following assessment necessary patients are placed on expected, practice within our hospice with each team PE 2.S273 the palliative care register and patients wishes now eagerly awaiting review. documented. Symptoms such as breathlessness have Organization of palliative/hospice care in

been improved through advising GPs, reducing Poland according to the data from Ministry of sessions anxieties and attending day therapy at the local PE 2.S271 Health Registry 2008 hospice. This has contributed to reducing hospital Pawlowski L1, Lichodziejewska-Niemierko M T1, Buss T1 admissions and 4 patients have died at home and 2 in Learning from early adopters (Saturday) hospice. 1Medical University of Gdansk, Department of Palliative Conclusion: The role is challenging, rewarding and Kraan M1, van der Poll A1, Scholte M2 Medicine, Gdansk, Poland Poster varied, with a positive effect on patients’ quality of life. 1Agora, Bunnik, Netherlands, 2Movisie, Utrecht, Cross boundary working gives continuity and palliative Netherlands Background: Palliative care in Poland is offered in care peer support. Working 2 days in the community various forms of health care institutions in which there can be limiting. Further discussion is required to audit Psychosocial problems and needs in palliative care are specific palliative care units. They include: home the role in the future. deserve specific attention. Doctors and nurses are hospice, palliative/hospice day care center, residential capable to notice the first signals of psychosocial hospice, palliative medicine hospital ward, palliative problems, but they are not always able to recognise and medicine clinic, hospital-based supportive teams of treat specific psychosocial problems. Therefore, social palliative care. Any health care institution may consist workers could play an important role in psychosocial of one or more palliative care units. care for palliative patients. They are educated to Aim: The aim of the study was to review the

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 179 Poster sessions (Saturday)

organization of palliative and hospice care in Poland in Opportunity days (extra days patient stayed compared crises, a 24/7 on-call service is offered. 2008. to national standard) decreased from 15,488 to 2734 Results: In the first 18 months of the cooperation 139 Methods: The analysis of the Ministry of Health when the 7-year LOS benchmark was used. Mean 2008 patients could be included in the Integrated Care Registry of Health Care Institutions in Poland LOS was 10.5 ± 7.9 with a palliative medicine Programme (71male, average age 69 yrs, range 26-100 concerning palliative care units.The criteria used for benchmark of 9.7 (national average 7.3). Using this yrs), of whom 110 have died so far. The average analysis were: benchmark, opportunity days decreased from 1857 to duration of care by the PCT was 61 days (range 3-420 d) 1) type of unit 451. Opportunity days for the 5 most common APR- for deceased patients, and 145 days for alive ones. 82% 2) type of subject which founded the unit. DRGs in the 7-year period also decreased: respiratory of patients had oncological, 11% neurological and 7% Results: According to the status in October 2008 there malignancy 71 (from 804), digestive malignancy 212 internal medicine diagnoses. Due to worsening of were 849 registered units which were offering palliative (from1178), musculoskeletal malignancy 45 (from symptoms, 30% of the patients required admission to a care in Poland. Almost half of them (413;49%) were 984), hepatobiliary/pancreatic malignancy 43 (from palliative care unit, while 13% were admitted to an delivering care at patients’ homes, 263(31%) on the 482) and lymphoma 111 (from 533). Using same inpatient hospice. 50% of the deceased patients died at ambulatory basis, 162(19%) in residential hospices/ benchmarks, 2008 opportunity days decreased for the home, 17% in an inpatient hospice, 25% in a palliative hospital wards and 11(1%) in the day-care facilities. above APR-DRGs: respiratory malignancy -23 (from 17), care unit, and 8% in an acute medical unit. 601(71%) from them were founded by individuals, digestive malignancy 22 (from 90), musculoskeletal Conclusion: The cooperation between a University companies, church, foundations and societes and only malignancy 62 (from 136), hepatobiliary/pancreatic Palliative Care Unit and a Hospice Association has 248(28%) by public subjects (of national malignancy -4 (from 20), and lymphoma 42 (from 65). proven to be a successful and enriching experience for administration and / or local government).The majority Discussion: There is no LOS benchmark for acute care both sides. This model provides a good basis for the of units were dedicated for adult patients (788; 93%) palliative medicine. Comparison defaults to a national implementation of Palliative Care Teams within the and only 61(7%) offered care for children mainly as average from the general medical/surgical population new German framework of “Specialized Community home hospices (54 of 61; 88,5%). which is significantly shorter. Admissions to an acute Palliative Care Services (SAPV)”. Conclusions: Palliative/hospice care units in Poland care palliative medicine unit is skewed to a sicker and are founded mainly as a private initiative. Among them more complicated population needing more complex home hospice and palliative medicine clinics are medical/psychosocial care with longer length of stay. PE 2.S278 predominant. There is a need to develop hospital-based Conclusion: LOS benchmarks can be derived from an supportive teams and better palliative care for children. existing data summary that more accurately reflects the Access to the knowledge base for supportive and complex care in palliative medicine and reflects a palliative care in Europe: Comparative analysis longer length of stay. of national online knowledge services PE 2.S274 Stevens R J1, Brady D2, Hodson M3, Ahmedzai S H1 Ambulatory routines in a unit of palliative care PE 2.S276 1University of Sheffield, School of Medicine and in Brazil Biomedical Sciences, Academic Unit of Supportive Care, A multifarious approach to promoting palliative Sheffield, United Kingdom, 2St Christopher’s Hospice, Pinto C S1, Cerqueira L1, Bouzan M1, Vinhas F1 care in Greece for patients with neuromuscular Library, London, United Kingdom, 3Help the Hospices, 1INCa - Instituto Nacional de Câncer, Hospital do diseases London, United Kingdom Câncer IV, Rio de Janeiro, Brazil Tsonioti M1 Aims: Access to the best current knowledge in The approach of outpatients in ours Palliative Care 1MDA Hellas, Athens, Greece supportive and palliative care is a basic requirement if Unit, in Brazil, is available to the patients that have a care is truly to be evidence-based. England has hosted better performance status (KPS), above 50%, and to the MDA Hellas (Muscular Dystrophy Association of an online specialist library website for professionals in patients that have a worst KPS but living outside Greece) was formed in 2000 in order to improve the supportive and palliative care since September 2004. coverage area of our Home Care Service. During the quality of life of patients with neuromuscular diseases. Other such initiatives have been under way in other first consult, the patients are attended by all the Throughout the years our primary concern has been to countries worldwide. However, there was no clear multidisciplinary team that will determine the patient’s address the unique challenges in the care of patients picture of the level of development of such services profile and their plan of care. In subsequent with neuromuscular diseases and have been actively internationally. To gain an insight into best practice attendance, the patients will be consulted only by the promoting palliative care. across Europe we compared those national websites in professionals directly responsible for their needs, the Our goal has been to create a system of support and EU member states which seek to help supportive and frequency of return is around fifteen days. The networking by addressing the scientific community, palliative care professionals access and use the best caregivers are present consultations to receive professionals working on the field, the patients, their current knowledge. information and explanations to your questions. Drugs, families and the community at large. Through an Methods: We conducted a study of the provision of materials to dressing, oxygen and other items that may international collaboration with the Bioethics Institute national online medical and health knowledge websites improve the patient’s quality of life are available. The at John Hopkins University we have been able to in supportive and palliative care across the European ambulatory gives support to an average 600 patients explore different techniques used worldwide and Union’s 27 member states. The study was in 3 stages: with about 80 new patients by month. In our study, we expand our scope of activities. (1) Systematic literature review of relevant observed those patients who initiated the ambulatory With this poster presentation our goal is to present the bibliographic resources in medicine, health, social care accompanying from January 2008 to September 2008. challenges and activities we have made in the past years and information science. The monthly average admissions in our facilities were in developing palliative care for patients with (2) Internet searches gathering core data on each state. 77,8 with a global rate of 54,9% of male patients. The neuromuscular diseases. (3) Development of a simple typology of national median of age is 61 years and the average of the KPS are More specifically our patients, parents and sibblings health knowledge service websites illustrating a 4-stage above 60%, representing 75% of studied population. support groups, our integrated art groups - theather and spectrum of development. The most common tumors are: head and neck (34,3%), painting-, our sports activities for patients, our public Results: A table was assembled showing the lung (12,8%) and cervical (8,7%). The most frequent awareness program for neuromuscular diseases for characteristics of online national knowledge services sites of metastatic disease are lung (9,7%), liver (6.7%) preschool and elementary school age children, our across the EU. Data collected showed wide variations in and brain (3,8%). At the first consult, about 44,6% of adult volunteer program and our scientific program the level of provision for professionals in this field. patient presented pain, with an average verbal will be addressed. Furthermore, we will present the Conclusion: There are inequalities in the quantity and numerical scale (VNS) under 5, and about 40,9% of MDA special clinics developed (three so far throughout quality of national knowledge services available to patients were using opiates previously. The most Greece) in order to be able to foster an interdisciplinary health and social care professionals in supportive and common symptoms are: constipation (51.5%), approach for patients with neuromuscular diseases. palliative care across EU member states. This may be hyporexia (46.2%), asthenia (31.8%) and fatigue due to a number of variables including differences in (18.4%). Most patients have at least 2 symptoms at the national government policies, economic development, time of admission. The aim of ambulatory set of PE 2.S277 culture and infrastructure. The potential for free palliative care unit is to offer an accurate movement of the palliative workforce across the EU multidisciplinary assistance in agreement with our Integrated care in palliative medicine - may not therefore be matched by a similarly free flow patient profile for the adequate symptom control and Cooperation between a university hospital and a of the best current knowledge to wherever it is needed. improvement for the patient and family/caregiver’s hospice association quality of life. Vyhnalek B1, Borasio G D1, Beyer A1, Gockel M1, Schlemmer PE 2.S279 M1, Lorenzl S1, Westrich A2, Ohly A2, Hirsch B2, Raischl J2 PE 2.S275 1LMU Munich, München, Germany, 2Christophorus Do geographic accessibility and deprivation Hospice Association, München, Germany levels predict a hospice death? Benchmarking length of stay (LOS) in acute care palliative medicine Background: In Germany, different models for Wood J1, Gatrell T1, Emerson E1, Clark D1 Integrated Care Programmes in palliative medicine 1Lancaster University, School of Health and Medicine, Lagman R L1, Young B1, Mac Mahon J1, Walsh D1, Le sessions have developed over the last few years. In Munich, a Lancaster, United Kingdom Grand S B1, Davis M P1, Russell M1, Estfan B1 cooperation was established in April 2007 between the 1Cleveland Clinic, Harry R. Horvitz Center for Palliative AOK (largest local public health insurance), the Background: Previous research has shown that

(Saturday) Medicine and Supportive Oncology, Cleveland, United Interdisciplinary Center for Palliative Medicine (IZP) of inequalities exist in the geographic accessibility of States the University Hospital and the Christophorus Hospice inpatient hospices across England. Accessibility is Poster Association (CHV). highest in major conurbations; rural areas have poor Aim: Determine length of stay (LOS) benchmarks in Methods: Registered patients with particularly severe access. acute care palliative medicine as. symptom control and/or psychosocial problems are Aim: To determine whether geographic accessibility, Method: A retrospective review of the institution’s attended by a Palliative Care Team (PCT) composed of deprivation, gender, age and region are predictors of a computerized data base involving the All-Patient an experienced physician from the IZP, as well as hospice death. Defined Diagnostic Related Group (APR-DRG), specialized palliative care nurses and social workers Methods: Hospice ‘accessibility scores’ were derived palliative medicine discharges by physician from 2001- from the CHV. The PCT offers a consult service for all using a Newtonian distance decay model that analysed 2007. This data was compared to 1/1/08-8/31/08. health care professionals involved in the patient’s care 6.5 million road network drive times between 189 Results: From 2001-2007, there were 5546 discharges, and can also visit patients at home or in the nursing inpatient hospices and 34,378 localities. Utilisation mean LOS 9.7 ± 7.3 with a Palliative Medicine target home. The PCT decides on a case-to-case basis which ratios contrasted hospice cancer deaths against all benchmark of 9.2 (versus national average of 6.9). team members to involve for each patient. For acute cancer deaths, by: region, hospice accessibility and

180 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) deprivation levels, urban-rural typology and Treatment (POLST) paradigm in the Inland Empire, options of palliative care development in Ukraine. demographic variables. Correlations examined possible located in Southern California, will increase awareness Methods: linear relationships between accessibility, deprivation, and fulfillment of patients´ wishes for life sustaining 1. Implementing 2 international projects financed with and the proportion of hospice deaths per locality. A care. grants provided by the Polish-American Freedom multivariate binary logistic regression analysis, Processes to resolve problem: Working with a broad Foundation in cooperation with palliative care undertaken on 378,482 anonymised adult cancer death cross section of the Riverside County community, the organizations in Ukraine. records (2003-05), modelled whether access, Inland Empire Palliaitive Care Coalition (IEPCC) 2. Consultations, counselling and cooperation of Polish deprivation, age, gender and region influence the developed a community-based model to implement the experts with the Ukrainian partner aimed at likelihood that a patient will die in a hospice. POLST paradigm. It incorporated physicians, nurses, elaborating: legislative legal acts for the nationwide Results: Cancer patients from across society die in hospice organizations, skilled nursing facilities, Ukrainian laws and proper standards of palliative care hospices. Once effects attributable to other variables are chaplains, and concerned community members. The procedures. accounted for, the odds of dying in a hospice in IEPCC´s approach focused on 3. Analysing data provided by WHO and the Ministry of England are significantly greater for cancer patients (a) identifying potential patients and families Heath in Ukraine. from the most accessible decile of localities than for benefiting from POLST, 4. Analysing data provided by partner organizations. those from the most inaccessible decile of localities, (b) working with primary care physicians in utilizing Results: 12 people form Ukraine participated in two 7- though a notable distance decay effect is seen in the POLST as a complementary document to the advance day internships organized in Poland. 5 Polish specialists least accessible rural areas. Patients living in the most directive, and visited Ukraine, and 320 altogether participated in 5 affluent decile of localities are significantly more likely (c) developing educational campaign regarding POLST training courses and consultations organized in to die in a hospice than are those from the most to easily identify and execute POLST. Ukraine. deprived decile of localities. Outcomes: Since its implementation in 2007, Problems reported: No procedure standards or legal Conclusion: Clear gradients in the likelihood of a utilization of POLST increased to over 10000 patients acts which could allow for palliative care development, hospice cancer death, by decile of accessibility and and is in use by 15 facilities in Riverside County. The insufficient funds, no home care provided, a limited deprivation, are revealed. Further research examines observed benefits of the POLST include access to opioids. who dies in hospices. (a) greater ease of discussing end of life care with Conclusions: The way to develop palliative care in Funding: ESRC CASE studentship PhD award. patients and families, Ukraine is to: (b) increased awareness of palliative care based • Introduce legal acts governing palliative care treatment, as well as functioning and medical standards; PE 2.S280 (c) fulfilling wishes across continuum of care. • Provide financing sources: state budget funds, other: The success of this local initiative, as well as that of funds collected by non-governmental organizations Specialist nurses experience of clinical skills several other community coalitions, led to the state (foundations, associations, sponsors); training to support service development wide acceptance of the POLST. In August 2008, the • Introduce training courses for staff working at POLST form was signed into legislation as the standard hospicesand staff employed in other specialization Brown M1, Chesters A1, Pitts V2, Bosworth M3, Meystre C4 for communicating patient´s end of life wishes in fields: internal medicine specialists, general 1Warwickshire PCT, Warwick, United Kingdom, 2Heart California. practitioners, oncologists, social welfare employees; of England Foundation Trust, Birmingham, United • Develop home care; Kingdom, 3Myton Hamlet Hospice, Warwick, United • Provide an easier access to opioids; Kingdom, 4Heart of England Foundation Trust and PE 2.S282 • Change social stereotypes. Marie Curie Hospice Solihull, Birmingham Hearlands Hospital, Palliative Care Dept, Birmingham, United The partnership between a NGO and a company: Kingdom A successful story PE 2.S284

Aim: Debate surrounds development of clinical Lazar A1 The general public’s experiences, perceptions examination skills taking nursing roles into 1Hospice ‘Casa Sperantei’ Foundation, Social Work, and expectations of palliative care in Romania traditionally medical areas. NHS workforce and care Bucharest, Romania delivery redesign, combined with the shortage of Landon A S1, Muntean M1, Dumitrescu M1 medical staff, economics, European Working Times Almost 20 years after the 1989 Revolution, the palliative 1Hospice Casa Sperantei, Brasov, Romania Directives and the GP out of hours contract give care services in Romania continue to be provided opportunities for nurses with extended clinical skills. primarily by NGOs. In order to develop palliative care Aims: This study aims to explore the general public’s We aimed to record the experience of senior nurses services, the community involvement and financing experiences, perceptions and expectations of palliative learning medical examination skills. are very important. Creating a partnership between a care services in Romania. Method: We purchased a 3-day traditional medical NGO and a company, for which the corporate social Methods: A questionnaire survey was applied to a model MK Update clinical examination skills course responsibility is a way to improve the people’s quality stratified random sample of the population, who were with one tutor supported by our doctor. Attendees were of life, has been a way in developing and delivering interviewed at home by an independent market examination models. On day 3 attendees were given a palliative care. research company. Experiences, perceptions and questionnaire on attitude, experience, content and The program has taken place in 2007 in 4 big cities of expectations of palliative care were assessed. Individuals motivation to continue developing skills. Romania (Bucharest, Brasov, Oradea and Bacau) and its were questioned about experiences in general of caring Results: 16 Clinical Nurse Specialists (14 palliative care, aims were to provide innovative palliative care services for people with advanced illness, how such care might 2 cancer) attended.14 replied (87.5%). Nurses wanted to (respite-care, support-groups) and to continue those be appropriately addressed and how the community expand knowledge and skills, improve history taking already existing for the persons in need (home visits, and the state healthcare system could be involved in and fulfil service development roles. Concerns were: hospital palliative care, activities in day-centers and in- improving services available for terminally ill patients. forgotten anatomy and physiology; examining patient units). After one year, 734 adults and 225 Results: 2483 individuals completed the survey. 12% colleagues and being examined; taking on medical children have received palliative care services through had personal experience of caring for someone in the roles without training; unknown expectations and 1,413 hospital consultations and 10,057 home visits. terminal stages of illness and 9% reported another discovering their own pathology. The caregivers were involved in support groups and 31 member of the household having had such experience. They felt relaxed, intellectually stimulated and different leaflets were created for them. Also, they were 18% of carers had no extra support and bore the burden challenged. The pace overwhelmed them at times. sustained by the new respite activities. Volunteers as the of care alone. 54% of respondents felt that terminally ill Despite apprehensions and anxiety they enjoyed community representatives were involved in providing patients should be cared for at home, 30% in a learning new skills. Best things were enabling teaching, some of the palliative care services. specialised centre and less than 1% in hospital. If they refreshing forgotten knowledge and feeling a liver! The involvement of the company has given the had to care for a terminally ill patient at home, 70% of Worst was being examined but this gave insight into opportunity to the palliative care providers from 3 respondents identified the need for medications to patient experience. The information in three days was centers (Bucharest, Brasov and Oradea) to diversify their relieve pain, 55% for qualified medical staff to visit onerous. As lone practitioners they doubted further offer of services for the people struggling with an regularly and 35% for trained professionals to discuss skills use so were keen to join a learning set. advanced illness and their families. In another center with the patient and family about the illness and Conclusion: The changing NHS requires role (Bacau) palliative care services have been newly created prognosis. 61% stated that the public health system development. Responses showed clearly the and developed. The new team was linked with existing should invest money to relieve suffering in patients apprehension and fear of learning new skills but also ones as a network of palliative care professionals. with advanced disease, 33% recognized that these enjoyment and enthusiasm for doing so with support. The results of the first year have led to a continuation of patients’ needs could not be completely addressed with Nurses identified that these new skills would only be the partnership for the next year, in this way the public funds and that everyone in the community helpful to their role if they were competent in their use, number of people having access to the palliative care should support specialist centres with donations. supervision and practice were required. A longer less services has increased. Conclusions: This study illustrates the general public’s intensive course may be better. experiences, perceptions and expectations of palliative care in Romania and highlights the preference for PE 2.S283 palliative care either at home or in a specialist unit.

PE 2.S281 These findings will be used to influence national health sessions Palliative care in Ukraine - Present condition and policies regarding the development of palliative care A community-based model is effective for prospects for development services.

implementing Physicians Orders for Life (Saturday) Sustaining Treatment (POLST) paradigm Mardofel A1, Cialkowska-Rysz A2 1Lódz Hospice Association, Lódz, Poland, 2Medical PE 2.S285 Poster Mahdi T1, Mahdi B2 University of Lódz, Palliative Medicine Unit, Oncology 1Inland Empire Palliative Care Coalition, Riverside, Department, Lódz, Poland Anticancer therapies in palliative care settings? United States, 2Ross University School of Medicine, A case series Portsmouth, Dominica Introduction: In Ukraine there is no state legislation or proper medical standards for palliative care. Based on Alt-Epping B1, von Schoenebeck X1, Lindena G2, Nauck F1 Problem: A limited awareness & miscommunication data provided by Ukrainian organizations stationary 1University Medical Center Göttingen, Dept. of of patients´ wishes for life sustaining care across the units located in 13 of 26 provinces are the only form of Palliative Medicine, Göttingen, Germany, 2Institute continuum of care. palliative care. CLARA, Kleinmachnow, Germany Hypothesis: Using a community based approach to Aim: Identification and assessment of the present implementing Physicians Orders for Life Sustaining condition of palliative care in Ukraine. Assessment of Introduction: Anticancer therapies (ACTs) gain

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 181 Poster sessions (Saturday)

attention in specialized palliative care (PC) institutions. PE 2.S287 PE 2.S289 Their effects on symptom control are increasingly documented. The use of ACT, preceding assessment, How to integrate palliative medicine into Inventory of the organisation of palliative care response on symptom burden, overall clinical outcome, medical oncology: Analysis of a stepwise in seven European countries psychosocial co-factors, patients´ wishes, treatment realisation of the ESMO Designated Center related morbidity, time spent for application and Program at an academic teaching hospital Van Beek K A1, Ahmed N2, Woitha K3, Paz S4, Jaspers B5, surveillance procedures, and financial burden are still Mino J-C6, Leppert W7, Mollard J M6, Ahmedzai S H8, Engels to be described. Kloke M1, Stahl M1 Y9, Noble B10, Gómez-Batiste X4, Menten J1, Vissers K3 Methods: Over a two year period, all in- or outpatients 1Kliniken Essen Mitte, Essen, Germany 1UZ Leuven, Radiotherapy-oncology, Leuven, Belgium, eligible for and treated with ACT on our PC unit were 2Academic Unit of Supportive Care, School of Medicine interviewed, clinically assessed (rating scales and Introduction: The European Society for Medical and Biomedical Sciences University of Sheffield, MIDOS) and further observed. Clinical chart Oncology elaborated a program for the integration of Sheffield, United Kingdom, 3Radboud University evaluation, semistructured interviews with the palliative medicine (PM) into medical oncology (MO). Nijmegen Medical Centre, Department of responsible PC physician and financial calculations by A key element of this project is the accreditation of a Anesthesiology, Pain and Palliative Medicine, the clinic pharmacy provided further information. department for Medical Oncology as a Designated Nijmegen, Netherlands, 4Institut Català d’Oncologia, Results: To date, 8 patients have been evaluated. In 5 Center if a catalogue of 13 criteria has been realized. Barcelona, Spain, 5University of Bonn, Malteser patients, ACT showed no associated clinical or Aims: to analyse the process of a programmatic Hospital Bonn/Rhein-Sieg, Science and Research in subjectively reported benefit. One patient perceived an integration of PM into MO within an academic Palliative Medicine, Bonn, Germany, 6Réseau Ensemble, impressive, but very short-lived improvement of teaching hospital Paris, France, 7Poznan University of Medical Sciences, dyspnoea (6 days). In 2 patients, a relevant tumour Method: a retrospective analysis of the process with Chair and Department of Palliative Medicine, Poznan, response with improvement of palliative outcome regard to its personal, structural, organizational Poland, 8School of Medicine and Biomedical Sciences criteria could be observed in a treatment interval lasting elements within a Dep. Medical Oncology during the University of Sheffield, Academic Unit of Supportive 5? months (Euro 14.879,- therapy related costs) and 7 last 5 years Care, Sheffiels, United Kingdom, 9Radboud University months resp. (Euro 14.418,-). No significant toxicity was Results: Nijmegen Medical Centre, Afdeling Anesthesiologie, reported. Decision criteria were rapid disease progress Personal aspects: At the beginning, all members of the Pijn en Palliatieve Geneeskunde, Nijmegen, (7/8), patients´ demands (7/8), and positive experiences staff underwent additional training in communication Netherlands, 10Sykes House, Macmillan Senior Lecturer in similar previous situations (6/8), whilst treatment skills as well as in pain and symptom control. One third in Palliative Medicine, Sheffiels, United Kingdom costs or patient´s age were no relevant decision criteria. of the staff inculding dietician, physiotherapists and Discussion: In a specialized PC setting, ACTs are psychooncologists underwent further education in PM, Aim: To compare the organisation of palliative care in infrequently applied. Profound symptom control could at least one physician and two nurses per ward obtained seven European countries (Belgium, France, Germany, be documented in 2 cases, which was related to novel a degree in PM. Poland, Spain, The Netherlands and The United targeted therapies. The economic burden approaches Structural aspects: The routine use of validated Kingdom) in an EU funded Project: ‘Best practice in values that are considered to be ineffective in costs in instruments for the evaluation of pain and other Palliative Care in Europe’. life-years gained studies, besides the individual symptoms as well as for the need of psychosocial Study design and methods: A questionnaire has procedural expenditures. Therefore, the use of ACT in support become obligatory. Written guidelines for the been developed by the participating researchers with PC should be restricted to highly selected patients, treatment of pain, respiratory and gastrointestinal open questions about the organisation of palliative care comprising novel targeted therapies and their response symptom were given. A formular for documentation of (national health care system, laws regarding palliative prediction criteria. patient´s living will had been introduced as well as a care and financing). In the summer of 2008 a literature documentation flow for palliative sedation. search was performed in each country, including grey Organizational aspects: A group of volunteers (out- literature. The questionnaire was filled in by the PE 2.S286 patient hospice) as well a ambulant palliative care researchers based on this literature review and sent to network has been founded. A round the clock hotline national experts in the field of palliative care such as Facilitating success: A review of literature about has been installed for palliative emergency cases. A professors in palliative care, professional healthcare the contribution of ‘champions’ to service multidisciplinaray PM team with weekly conferences providers and policy makers to confirm and to give improvement programmes has been created. comments on the data of their own country. With this Conclusions: The integration of PM into MO is an information a definitive overview of the organisation of Kennedy S M1, Seymour J1 ongoing process requiring a systematic and stepwise palliative care in the seven countries was made. We 1University of Nottingham, Sue Ryder Care Centre for approach. It optimizes the quality of medical treatment compared the collected data of the seven participating Palliative and End of Life Studies, Nottingham, United and strongly contributes to patient´s, relatives´ and countries. Kingdom staff´s satisfaction. Results: We were able to describe similarities and differences in the organisation, the legislation and Background: This literature review was financing in palliative care in 7 European countries commissioned by the Programme Director for the NHS PE 2.S288 (Belgium, France, Germany, Poland, Spain, the End of Life Care Programme in response to findings of Netherlands and the United Kingdom). the programme’s national evaluation: that successes Telephone triage in specialist palliative care Conclusion: There are many differences between were attributed often to the contribution of European countries in the organisation of palliative ‘champions’ involved in the programme. Sutherland J L1 care. We were able to describe similarities and Aims: To examine the contribution of designated 1Saint Francis Hospice, Romford, United Kingdom differences in seven countries. All results will be facilitators to a broad range of improvement presented at the EAPC conference in Vienna. programmes, to explore whether / how they help In light of the national agenda for the modernisation of generally to promote success. healthcare services and for high quality palliative care Method: A semi-systematic review using CSA Illumina to be made available and accessible to all patients with PE 2.S290 and MetaLib resources. Inclusion criteria included ‘hits’ life limiting illness the challenges for specialist in keywords and/or abstracts published in English from palliative care providers are immense. Setting complementary therapies in a public 1998 to 2008 (MetaLib) and 2003 to 2008 (CSA In order to keep pace with change and meet the many hospital and a private clinic: Process of Illumina). Search terms (with Boolean combinations): and varied challenges it has become increasingly organization of services and permanent auditing champion*, facilitat*, advoca*, spokes*, (pro* lead), necessary for providers of specialist palliative care to of results sustain*, long term, impact, outcome, effect*, change, break with tradition and look outside of the box to find benefit. After criteria attrition - firstly scanning results ways of increasing service provision with their limited Holguin-Licón M1, Villa-Cornejo B2 for general relevance, then examining abstracts for resources. 1Hospital Ruben Leñero, Clínica del Dolor (Pain Clinic), clarity and content of specific relevance, and removal Saint Francis Hospice made a ground breaking move by Mexico, Mexico, 2CUREMEX, Medical, Mexico, Mexico of duplicates - 104 papers remained for detailed establishing a specialist telephone triage service to scrutiny Findings. facilitate a comprehensive structured specialist Complementary therapies (CT) are relevant part of 96 of the104 programmes are identified as effective, palliative care assessment; to provide support and palliative care. They can help to control pain among with details provided about the extent or type of impact specialist advice to patients who have specialist other symptoms and may improve quality of life to and factors influencing the successful outcomes palliative care needs but do not wish to be supported by both ambulatory and in bed chronic and acute patients Success is linked specifically to the facilitator/s in 53/96 a home visiting service; to support immediate referral in hospital settings. To set complementary therapies in effective programmes. The facilitators´ contributions to appropriate hospice service and to provide specialist public hospitals and private clinics implies a process of are linked variously to their input; functions and roles; advice and support for professionals, patients and organization of services and permanent auditing of personal characteristics; level or locations of work, and carers. results. from where recruited. In 28 effective programmes, the The adapted model of the Support Team Assessment The aim of the study is to report the organization contribution of the facilitator/s is substantial, variously Schedule (STAS 1989) is used as an assessment tool, and process of CT in a public hospital and a private clinic described as a crucial, main or important factor. The this facilitates comparison of telephone assessment (Mexico City) and the auditing of improvement in

sessions paper provides detail of the substantial facilitator outcomes. The introduction of a Triage service has quality of life for chronic and acute patients. To contribution to nine effective UK-based programmes. successfully reduced waiting lists by providing a flexible measure benefits Edmonton Functional Assessment Conclusions: The findings strengthen applications for and responsive service appropriate to the patients needs Tool (EFAT), Visual Analogue Scale (VAS) and Palliative

(Saturday) End of Life Care Strategy (July ’08) funding to be used at the time of referral. Patient satisfaction Outcome Scale (POS) were applied. Data evidences that on employing facilitators to lead ongoing work to questionnaires re-enforce its success. Clinic Reflexology, Reiki and Indian Head Massage Poster improve access to and quality of end of life care. We are all challenged to have confidence and courage improve quality of life with regard to pain and general Main source of funding NHS End of Life Care to take the very best of palliative care and make it well-being. Programme. available to a wider reaching group of patients without Conclusions are that complementary therapies are diluting or compromising our services. Using models useful means to provide palliative care for chronic and familiar in other specialities, adapted to our patient acute patients; however, it implies to assure group, we have been able to modernise and improve institutional acceptance and support to maintain and our service. Telephone triage is an exciting innovation expand the services. Auditing benefits are important and an indisputable asset to modern day specialist tools to get it. palliative care provision.

182 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

PE 2.S291 PE 2.S293 PE 2.S295

To be yourself until the end. Could well- The consultation-hour for the ambulant patients Ketamine in the treatment of cancer pain - A organized palliative services contribute to this as an effective form of palliative care systematic review ambition? Hait B1, Prinz-Rogosch U1, Froehlich H1 Scholz A1, Sandner-Kiesling A2, Strohscheer I1 Spinková M1 1Katharinen-Hospital Unna, Palliative Care, Unna, 1Medical University Graz, Graz, Austria, 2Medical 1Cesta Domu, Prague, Czech Republic Germany University Graz, Department for Anesthesiology and Pain Therapy, Graz, Austria At the end of his life we are in many ways fragile and The Palliative Care Department in Unna exists since vulnerable. With the healthcare system in the Czech 1998. To extend our offer for a better symptome control Ketamine is increasingly being used as an adjuvant to Republic patient may easy loose himself. Renowned for the ambulant patients, we organized in 2002 the opioids in the treatment of cancer pain, mainly without specialists attend to individual parts of the body; the consultation-hour, for which great demands are made evidence based recommendations regarding dosages patient receives various reports which often contradict on. and indications. We conducted a systematic review to themselves and he doesn’t have anyone who would put The aim of this investigation mainly was to see to what examine the available evidence of using ketamine in together some meaningful message, which would extend is this form of the palliative care in use and the treatment of cancer pain. comprehensibly tell him what he needs to hear: how to what results could be achieved with the help of such A limited systematic review including randomized use the short time he has left, how to deal with his life supplementary offer in palliative patients. Another goal controlled studies, controlled clinical studies, and case in his own way. Instead, he looses himself little by little was to analyze the statistic as well as to observe general reports was performed. Studies were identified by a and is transformed from a subject into an object. He is tendencies as to predict the advantages of this database search which used the Cochrane Library (Issue literally portioned up into parts which, just as the institution. 3, 2008), OvidMEDLINE (1990- 2008 week 40), PubMed specialists themselves, do not communicate with each During six years we cared 241 patients in the palliative (1985- 2008 week40) and Embase (1988-2008 week 40), other (illustration). care consultation-hour. We explored following criteria: by using the operators „Ketamine AND Cancer AND Palliative care does not offer the alternative of only one the reason(s) to contact us in the consultation-hour, Pain“. Additionally reference lists from review articles person who has time, looks into one’s eyes and holds duration of the consultation, strategy and measures and already identified papers were hand searched. All the ill person’s hand. It again offers the system of taken in the consultation-hour, effectiveness of the studies and case reports which used ketamine for the specialists. Will not the patient be portioned up once therapy recommended (for example by control of the therapy of cancer pain in adult patients were included. again, though perhaps more kindly? If we wisely symptoms conducted in the regular home visits). Four randomized controlled studies, 6 controlled organize palliative service for the patient we must Results of positive changes in the treatment of the clinical trials, 2 chart reviews and 16 case reports accept the fact that we all have different wishes and ambulant patients could be gathered. including 20 patients in total were identified. We found needs - however we all want to remain ourselves. Conclusions: evidence grade I for the use of oral, epidural and Freedom must therefore stay at the patient´s side, as 1. The consultation-hour seems to be a good possibility intrathecal use in three studies with the indication much as possible. Palliative care must not offer services to get more intensive contact to the patient and his ‘neuropathic pain’, ‘terminal’ or ‘refractory cancer directively but present them as a comprehensible and family. pain’. The studies included between thirty and 48 open offer. It offers ways that a person and his loved 2. The personal contacts and the interdisciplinarity in patients. Overall in all studies, the most common ones can, but do not have to choose roads, which he is the consulation-hour is a good precondition for better application is the intravenous way with dosages ranging still able to pursue. symptom control in future. from 1-15mg/kg per 24 hours. Other common We conceive our services so that they complement each 3. At the group of the ambulant palliative patients we applications are the oral use of ketamine in dosages other and offer the patient what he needs in each phase can see that due to our contacts in the consultation- between 1 and 1.5 mg/kg per 24 hours and the of his life. The decision is always up to the patient and hour the time spent at home can be elongated. subcutaneous application of 0.1-1mg/kg ketamine per his loved ones. This is why each service (consulting 24 hours. We found no clear evidence for the dosages website, mobile hospice, club for bereaved, library etc.) and indications. offers room to choose another service and sensitively PE 2.S294 Throughout all studies and case reports show that invites the person to make this choice (illustration of ketamine provides an analgesic effect on cancer pain. communicating services). Mutual continuity and Administration of Gabapentin as co-analgesic However randomized controlled trials with large cooperation of services is necessary for a person to drug for bone pain management in patients with numbers of participants are still needed to provide remain himself, to be who he was and who he wants to advanced cancer evidence for the dosages and indications of ketamine’s be. use in cancer pain. Abesadze J G1, Ghvamichava R R1, Shavdia M D1, Jincharadze M I2 PE 2.S292 1Cancer Prevention Centre, Palliative Care, Tbilisi, PE 2.S296 Georgia, 2Adjarian Cancer Centre, Palliative Care, Supporting clinical teams through group Batumi, Georgia Intractable abdominal pain and discomfort in reflective practice patients of Chronic Liver Disease treated by Objectives: Assessment of “Gabapentin” co-analgesic corticosteroids Sutherland J L1, Scates C2, Lakey S3 effect in patients with residual pain, in case of bone 1Saint Francis Hospice, Havering-atte-Bower, United tumor lesions. Abbas S Q1, Abbas Z2, Khan P3 Kingdom, 2Saint Francis Hospice, Head of Education, Methods: 99 patients with malignant growths, 1St Clare Hospice, Palliative Medicine, Hastingwood, Essex, United Kingdom, 3Saint Francis Hospice, between 18-80 years (Average age-52,4), divided into 2 United Kingdom, 2Muhammad Medical College Inpatient Unit Manager, Essex, United Kingdom groups A (main -64) and B (control-35). Cancer Hospital, General Medicine & Gastroenterology, localization was as follows: Group A: breast 26, lung 15, Mirpurkhas, Pakistan, 3Muhammad Medical College Every nurse is required by the NMC Code of bone 5, prostate 7, unknown location 5, and 6 other; Hospital, General Medicine, Mirpurkhas, Pakistan Professional Practice to be a reflective practitioner and Group B: breast 23, prostate 3, colorectal 3, renal 2 and to regularly reflect on their clinical practice. However, 4 other. Patients with severe pain (33 in A and 21 in B) Background: Hepatocellular Carcinoma (HCC) and implementing individual clinical supervision for all received opioids and patients with moderate and mild Chronic Liver Disease (CLD) are relatively common in clinical staff is rarely feasible, financially or practically, pain (31 in A and 14 in B) received non-steroid anti- our region because of high prevalence of hepatitis viral due to the large numbers of staff involved. inflammatory drugs. Pain was assessed by Visual infection B and C. One of the Palliative care needs of A survey of clinical staff, conducted at Saint Francis Analogy Scale (VAS). Group A - the mean point of pain these patients is abdominal pain. There has been data Hospice in 2006 aimed to establish views on clinical was 6,0 by VAS, group B (correspondingly) - 6,4. Despite on Tender malignant hepatomegaly pain responding to support and stress. Results highlighted that clinical staff analgesic therapy, average residual pain was 3,1 (group Corticosteroids. However, there is reluctance to use felt lacking in support and clinical supervision and A) and 3,0 (group B) by VAS. All patients from group A steroids if the pain is due to disease related to viral would welcome a regular opportunity to reflect on their received Gabapentin during 15 days: I day-21.00 hepatitis. practice. 300mg.; II day-9.00 and 21.00 300mg.; III day-9.00, Aims: To observe the response of abdominal or Liver In response, a new initiative of mandatory, group 15.00 and 21.00 300mg. Patients in group B received capsule pain in patients with Chronic Liver disease reflective practice was implemented to develop group Placebo instead of Gabapentin in the same regimen. secondary to viral Hepatitis when the disease itself is reflective practice across all clinical teams. It was felt to Results: Pain management results: incurable. be the most effective way of providing appropriate Group A: Reduction of residual pain - from 3,1 to 1,0. At Patients and methods: Prospective study of 20 clinical support to a large number of staff and to the end of research, 20 from 38 patients with mild pain consecutively admitted patients with CLD and HCC in encourage ongoing professional development. The had no pain; 8 from 26 patients with moderate pain, our liver ward over a 4 months period. initiative enabled us to bridge the gap in our provision had no pain and 18 had mild pain. Only in 4 patients Results: Out of 20, there were 16 males and 4 females of clinical supervision for staff in Agenda for Change the point of pain didn’t change. with an average age of 58.5 years (range=45 to 70). All Band 5b and below and provide enhanced support Group B: Reduction of residual pain - from 3,0 to 2,6. had Ultrasound scan findings suggestive of HCC and through reflective practice. Finally: patients in group A have positive results: CLD. 2 patients had a positive serology for hepatitis B s

Reflective practice sessions of an hour long are held bi- residual pain was redused by 2,1 points (P<0,05). In Antigen, 2 had a history of heavy alcohol intake, 3 had sessions monthly throughout the year. The sessions are group B residual pain was redused (0,4 points). Most no known risk factor for liver disease and the remaining mandatory and monitored as part of the appraisal frequently revealed side effect of Gabapentin was 13 patients had serology positive for hepatitis virus C.

process. Group members are supported in bringing sadation. 4 patients had deep sedation, 2 patients- These 15 patients were included in study. 2 patients (Saturday) clinical issues, development issues, and diarrhea, and one case of euphorea, hadache and were later excluded as they had Ascites as a possible communication challenges to discuss in a safe and insomnia. cause of their Abdominal discomfort. Pain was recorded Poster protected environment. Conclusion: by Visual Analogue Score (VAS - 1 - 10, with 0 being no Feedback from both attendees and facilitators 1. Gabapentin reduced residual pain up to 2,1 points by pain). 13 / 15 started Dexamethasone orally at 2 mgs tds continues to be extremely encouraging. The end of first VAS; nearly no pain reduction by Placebo (0,4 by VAS), as they had no relief on full pain management at their year audit and a repeat clinical staff survey has enabled main side-effect was sedation; consultant physicians’ discretion. Pain was assessed by us to analyze and evaluate effectiveness of the 2. A flexible dosing approach appears appropriate to measuring VAS after 1 week. 11 / 13 had some response supervision and give us confidence that in providing ensure patient compliance and treatment success. with 8 / 13 observing complete relief (VAS - 0). 3 / 13 appropriate support for our clinical teams we are in had partial relief with VAS dropping by 5. 2 / 13 had no turn facilitating their provision of specialist palliative relief with stable VAS. No change in the patients’ care of the highest quality. disease status was observed over next one month. Conclusion: Abdominal pain / discomfort secondary

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 183 Poster sessions (Saturday)

to incurable Chronic Liver disease due to Viral Hepatitis record indicator events, such as frequency and ordinated approach from all care providers, with responds to Corticosteroids in the comparable way duration, as they occur in real time. The scores are particular focus on the involvement of the patients key malignant Liver capsule pain. calculated automatically. The digital information is worker and the nomination of a named prescriber. stored in a database, improving administration and Existing opioid replacement therapy with methadone allowing database applications. With the advantages of or buprenorphine should be maintained to avoid PE 2.S297 the electronic device, nurses will be stimulated to opioid withdrawal. It should be clear to the patient and perform more frequent pain measurements. A more other healthcare professionals what drug s are being Intermittent subcutaneous opioid adequate treatment can be provided with the used for pain. It may be necessary to establish ground administration: A safe, effective, and cost-saving knowledge of a more accurate pain level. Advantages of rules with the patient around the prescribing and strategy for the management of cancer pain this electronic observational pain scale are an increased dispensing of their medication. usability, less time-consuming and inclusion of Conclusion: Symptom control can be optimised in Parsons H A1, Shukkoor A2, Quan H3, Delgado-Guay M O1, complex timing patterns. This will lead to a more this challenging group of patients. Close working Palmer J L1, Fainsinger R2, Bruera E1 accurate measurement of pain, a more adequate between palliative care and substance misuse teams 1The University of Texas M.D. Anderson Cancer Center, treatment and thus improving quality of life. ensures that a clear plan of care can be formulated with Palliative Care and Rehabilitation Medicine, Houston, the patient and all the health care professionals Texas, United States, 2University of Alberta, Division of involved in their care. Palliative Care Medicine, Department of Oncology, PE 2.S299 Edmonton, Alberta, Canada, 3Capital Health Regional Palliative Care Program, Edmonton, Alberta, Canada Prolonged-release oxycodone/naloxone is very PE 2.S301 effective and tolerable in treatment of cancer The vast majority of cancer patients have pain and pain The impact of pain on behavioural disturbances opioids are its mainstream treatment. When the oral in patients with moderate and severe dementia route is unavailable, the most common alternative is Nolte T1, Schmidt T2 the expensive continuous intravenous infusion. 1Schmerz- und Palliativzentrum, Wiesbaden, Germany, Husebo B S1, Ballard C2, Aarsland D3 Aim: To determine the safety and effectiveness of a less 2Mundipharma GmbH, Limburg, Germany 1University of Bergen, Public Health and Primary expensive treatment modality for cancer pain Health Care, Bergen, Norway, 2University of London, management, the intermittent subcutaneous(ISC) Research aims: A prolonged-release (PR) Kings College, Wolfson Centre for Age-Related Diseases, opioid administration. oxycodone/naloxone combination reduces se-vere London, United Kingdom, 3University of Bergen, Methods: Retrospective review of 552 consecutive cancer pain and additionally prevents/ reduces side Clinical Medicine, Bergen, Norway admissions to a palliative care unit, collecting data for effects such as opioid-induced constipation. A all patients who received parenteral opioids. multicentre observational trial studied the efficacy and Aim: In nursing homes (NHs), 80% of the patients Information about demographics, injection sites and tolerability of oxy-codone/naloxone PR in broad have dementia, and considerable proportion exhibit administered opioids were reviewed from all patients practical use in more than 1.100 patients. behavioural and psychiatric disturbances (BPSD). The receiving ISC. Costs per milligram were determined and Study design and methods: In the 4-week prevalence of BPSD in the NH ranges between 60%- corrected according to relative potency to morphine. observational study, data was recorded at four 80% and includes physical combativeness, verbal ISC was considered successful if discontinued in favor assessment visits, the 2nd of which was optional. aggression, socially disruptive behaviour, depression, of the oral or transdermal route, or continued until Patients received oxycodone/naloxone PR at the and wandering. The aetiology of BPSD is poorly death. All patients used the Edmonton Injector, an initiation visit. Efficacy of oxycodone/naloxone PR was understood, but it is considered that it is multifactorial, inexpensive mechanical device to deliver ISC opioids. measured by changes in pain intensity (NRS, 0 -10 no including brain changes, genetics, diseases and pain. Results: 352/552(63%) admissions required parenteral pain - worst imaginable pain). Bowel function was Advancing age is associated with high prevalence of opioids, and 301/352(86%) used ISC. 53% were female, documented using the bowel function index, a newly pain often with pain duration of 3 months or more, mean age(range) was 61(19-97) years, and the most validated questionnaire for assessing opioid induced and there are indications that pain is more frequent in frequent diagnosis were thoracic(28%), constipation. Quality of life was recorded using the those with dementia. Since older persons with gastrointestinal(18%), urological(11%), and breast(11%) overall score (0 - 70 = no limita-tion - worst limitation) dementia have less communicative skills, pain may cancers. The success rate was 88%(266/301). The for the 7 usual parameters. At trial completion, doctors contribute to BPSD. Few studies have explored such median(interquartile range,IR) duration of ISC was and patients assessed efficacy and tolerance. Doctors relationship, but there is some preliminary support for 11(5-19) days, number of sites was 1(1-2), and additionally assessed tolerability of oxy- this hypothesis. This is of key importance, since a mean(standard deviation) site duration was 8(11) days. codone/naloxone PR compared to previous treatment. relationship between pain and agitation will have The most frequent site was the arm(61%). Common Results: 1.178 patients included in the study suffered therapeutic implications, implying that pain reasons for site change were local redness(20%), severe or very severe cancer pain. Average pain intensity medication could improve BPSD in dementia. bleeding(8%), and leakage(5%). Side effects and site reduced significantly. Bowel function and quality of life Methods: A systematic review of the literature will duration did not significantly correlate with site improved markedly. In the final assessment, the vast focus on the frequency, assessment and impact of pain location or opioid. The median(IR) potency-corrected majority of doctors and patients assessed effi-cacy and on BPSD in NH patients with dementia. Review from drug cost was CDN$2.02(0.77-4.54) significantly lower tolerance as “very good” and “good”, the vast majority the literature will be undertaken by electronic for methadone, CDN$0.27(0.06-0.32). of doctors assessed treat-ment with databases: CINAHL, Bandolier, Cochraine Pain, Conclusions: ISC opioid administration is a safe, oxycodone/naloxone PR as “much better or better” Medline, EMBASE, IASP website (1992-2008). Explicit effective, and inexpensive cancer pain treatment, being than previous medication. in/exclusion criteria will be outlines. Search terms will particularly important in financial resource-scarce Conclusions: Oxycodone/naloxone PR proved include dementia, pain, -assessment, -treatment, areas. effective and well tolerable in patients with severe and behavioral disturbances, agitation, neuropsychiatric Financial support: Pall. Care Rehab. Med. Dept. M.D. very severe cancer pain. The strong analgesic efficacy symptoms. Reference lists of retrieved articles will be Anderson Cancer Center. combined with improved bowel function markedly used to generate more papers and search terms. Two increases quality of life. reviewers will extract data from included trials. Data will be pooled, and analysed using appropriate PE 2.S298 statistical methods. Analysis will be discussed regarding PE 2.S300 the impact of pain on BPSD, including patients treated Development of an electronic observational pain with an antipsychotic, pain medication compared with scale The management of pain in palliative care placebo. patients with a history of substance misuse: The Conclusion: Current literature review will explore a Leysens G1, De Maesschalck L1, Bonroy B2, Schiepers P3, Van development of regional guidelines potential relationship between pain and BPSD in Rumste B2, Berckmans D3 patients with dementia in NHs. 1KH Kempen University College, Lier, Belgium, 2KH Finnegan C1, Cannell L2, Chapman L3, Fountain A4 Kempen University College, Geel, Belgium, 3KU Leuven, 1Queenscourt Hospice, Southport, United Kingdom, Leuven, Belgium 2Royal Liverpool University Hospital, Palliative PE 2.S302 Medicine, Liverpool, United Kingdom, 3Marie Curie Pen-paper observational scales have proven to be useful Palliative Care Institute Liverpool, Liverpool, United Breakthrough pain: The “best unknown pain to monitor pain, but have also a lot of disadvantages. Kingdom, 4Halton and St Helens Primary Care Trust, syndrome” The aim of this study is to present and examine the Liverpool, United Kingdom advantages of an electronic observational pain scale. Lossignol D A F1, Libert I1, Michel B1, Obiols-Portis M1 The pilot study (approved by a medical ethical Aims: The management of pain in palliative care 1Institut Jules Bordet, Supportive Care, Bruxelles, committee) took place in a specific geriatric centre. patients with a history of substance misuse can be Belgium Patients are included when they’re bedridden and have challenging. Patients are likely to have a low pain limited ability to communicate verbally. The caregiver threshold and can feel ill at ease in unfamiliar Breakthrough pain (BP) is a syndrome defined by: has to objectify pain by means of a behavioural healthcare settings. In addition health care Rapid onset of acute pain, lasting from seconds to hours

sessions observation scale. Their usability is often limited, they professionals are often reluctant to prescribe the (range 30 minutes), known factors as movements, are time-consuming because of their length, difficulties appropriate opioid dose due to fears of exacerbating the cough, miction, respiration, deglutition or unknown: in calculating scores, and post processing required to addiction or contributing to a drug overdose. The like neuropathic pain, co-existing chronic pain

(Saturday) evaluate the pain evolution. Also the exact timing of resulting sub-optimal care leads to poor symptom syndrome and/or an adequate chronic treatment. The the indicators can’t be recorded in real-time, and thus control for this group of vulnerable patients at the end underlying disease is often cancer. Poster complex timing patterns can’t be evaluated. Each of life. Differential diagnosis relies on clinical signs and patient was tracked for 6 random days, in which 6 Methods: Following a review of the current literature symptoms. Treatment is usually disappointing. assessment sessions were performed at clinically we met with the local substance misuse service. A We conducted a one year survey in our supportive care interesting moments, after an informed consent was questionnaire was sent to all senior palliative care department in order to analyze BP. signed by a relative. physicians in the region to establish both their current 42 admissions on 209 (35 patients) were related to BP. As input for the electronic scale, 3 valid and reliable links with local drug misuse services and their Some patients have been hospitalized twice or more. scales are chosen: the Pain Assessment Checklist for approach to managing palliative care patients with a Median duration of hospitalization was 7 days. Seniors with Limited Ability to Communicate, the history of substance misuse. All patients had progressive cancer disease with Discomfort Scale - Dementia of Alzheimer Type, and Results: Until recently there has been no common metastatic lesions. the Faces Pain Scale Revised. The electronic device (a consensus on how to manage this group of patients. All had opioids (i.e morphine, fentanyl, tablet PC with a touch screen) allows the caregiver to Our proposed guidelines focus on the need for a co- hydromorphone) and co-analgesics (antidepressants,

184 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) anti epileptics or steroids). general impression (GI) at 60 min using a 5 point VRS. derivates. Oxycodone hydrochloride and fentanyl are BP episodes occurred more than four times a day. The primary efficacy measurement was the PI two pure opiate agonists, with very high oral Treatment options were methadone (oral or IV) or difference at 10 min (PID10) after the first dose (PI at 10 bioavailability, a plasmatic mean life of 2-4 hours, and a opioid rotation, gabapentine or pregabaline and or min minus PI immediately before treatment (PI0)). fast beginning of analgesic effects. ketamine IV. We used oral transmucosal fentanyl citrate Sum of PID values up to 60 min (SPID60) and use of Objectives: To study the analgesic efficacy of (OTFC) in four cases (compassionate use). rescue medication were also recorded, as were adverse oxycodone and fentanyl in complex cures of ulcers and All patients improved but side effects were of concern events (AEs). wounds of a group of patients with severely limited especially with high doses of opioids (constipation, Results: Among 159 patients randomised, 152 functional autonomy who require cures at home. To somnolence, myoclonus). composed the ITT analysis set (89.5%) and 138 (90.8%) analyze the correct administration of opiates by Beside the treatment, the estimated cost of completed the double blind treatment phase. The LS caregivers and their possible adverse effects. hospitalization for one patient with BP was 3 758¤ (for mean vs placebo PID10 scores for INFS were 0.41, 0.81, Methods: 23 patients diagnosed of painful ulcers or 7 days). This is of importance if we note that patients 1.24, for 50, 100, 200 μg, (p = 0.001, p < 0.001, p < 0.001 wounds, with bad response to non-steroidal anti- receiving OTFC stayed less than 3 days at hospital. respectively) with response rates of 29.05%, 41.55%, inflammatory (NSAI), were treated with doses of oral BP remains a challenge in supportive and palliative 49.66% for the respective three INFS doses vs 22.07% oxycodone (2-4 ml), or 400 μg of oral fentanyl. During care. Diagnosis requires expertise and the cost of for placebo. Similarly, mean GI scores and SPID60 every day of treatment, the nurse called at caregiver one treatment has to be taken into account. Avoid long stay scores were significantly higher compared with placebo hour before visit at home, for the correct at hospital is a priority. All data will be presented in for all INFS dose groups (p < 0.001 throughout for both administration of drug. Previously we trained caregivers details. measurements). Use of rescue medication was about opiates. We measured analgesic intensity with incrementally lower after INFS use: 33.0%, 25.0%, the Visual Analog Scale (VAS) during the cure without 16.7% vs 43.3% for placebo. Incidence of AEs was low opiates (VAS-W), and during the cure with opiates (VAS- PE 2.S303 and all doses were well tolerated. O). We registered also the incidence and intensity of its Conclusion: INFS at doses of 50,100,200 μg side effects, and the incidences in administration of Should patients with a history of drug demonstrated fast onset of pain relief as early as 10 drugs by caregivers. dependence ever be prescribed short acting minutes after dosing, in the treatment of BTP in Results: 9 men, 14 women, mean age: 74 years (range opioids? A case report patients with cancer. All doses of INFS were well 56-98). Mean treatment duration 29 days (range 7-90). tolerated. VAS-W: Mean 8.7 (range 7-10). VAS-O: Mean 2.5, range Tysoe-Calnon V A1, Riley J1 0-5. Side effects: We have not detected any relevant side 1Royal Marsden Hospital, Palliative Medicine, London, effect associated to punctual doses of oxycodone. There United Kingdom PE 2.S305 was not a single wrong administration given by caregivers. A 30 year old male with metastatic gastrointestinal Pharmacokinetics of intranasal fentanyl spray Conclusions: Punctual treatment with oral oxycodone stromal tumour was on fentanyl patches for abdominal (INFS) in patients with cancer and breakthrough or fentanyl is a good alternative to conventional pain and had been started on fentanyl lozenges as part pain analgesia for painful cures of complex vascular ulcers at of a clinical trial of 1200mcg qds, for breakthrough home. It’s really effective and easy to manage by pain. The lozenges gave him a high feeling allowing Moksnes K1, Nolte T2, Lefebvre D3, Kress H G4, Popper L5, caregivers, and it’s safe for patients. him to interact better socially with friends. He had been Kaasa S6 diagnosed by a psychiatrist with social anxiety disorder, 1Norwegian University of Science and Technology, depression and drug dependence which he would not Department of Cancer Research and Molecular PE 2.S307 accept. He had a past history of recreational drug use. Medicine, Trondheim, Norway, 2Schmerz- und He was admitted complaining the fentanyl patches only Palliativzentrum, Wiesbaden, Germany, 3Centre Oscar Treatment of moderate to severe pain of opioid- lasted 20 hours and he felt he was withdrawing with all Lambret, Lille, France, 4AKH Wien, Wien, Austria, naïv patients with the combination of over body pain, joint pains, extreme agitation and 5Nycomed, Langebjerg, Denmark, 6St. Olav University Prolonged-Release (PR) oxycodone and PR sweats. He was on fentanyl patches 200mcg every 48 Hospital, Trondheim, Norway naloxone hours, fentanyl lozenges 200mcg 6 per day and diazepam 10-15mg daily. His patches were removed, Aim: This Phase Ib study investigated the Schutter U1, Meyer C2 lozenges stopped and he was converted to methadone pharmacokinetics, tolerability and safety of intranasal 1Schmerztherapeutische Schwerpunktpraxis, 20mg bd and diazepam 5mg nocte. The first night he fentanyl spray (INFS) in patients with cancer and Facharztzentrum am Marienhospital, Marl, Germany, had severe withdrawal effects, screaming and breakthrough pain (BTP). 2Mundipharma GmbH, Medical Affairs Pain, Limburg, threatening to jump out the window. He was seen by a Methods: This was a randomised, open-label, two- Germany psychiatrist and admitted to taking up to 80mg period, cross over trial involving adult patients with diazepam daily. He was put on a reducing regime of cancer who received opioid treatment for chronic Research aims: Analysis of the therapy of moderate to diazepam and methadone increased to 30mg bd. He background pain and experienced BTP. Patients were severe pain of opioid- naïv patients with a new was discharged a week later with ongoing pain and seen randomly assigned to receive one of six INFS dose combination of PR oxycodone/PR naloxone. on a weekly basis to be given a script by a single sequences: 50-100 μg; 100-50 μg, 50-200 μg, 200-50 μg, Study design and methods: During a 4 week prescriber. His pain settled and he was able to walk 100-200 μg, and 200-100 μg. INFS was administered as a observation phase of a multicentric non-interventional several miles and play golf. After several weeks he was single dose in one nostril. Venous blood samples were study data was collected at 4 assessment visits (of which able to admit he had been dependant and felt he had collected at 0, 2, 4, 6, 9, 12, 15, 20, 25, 40, 60, 90, 120, the 2nd was optional). Pain intensity was measured now come out of the fentanyl fog. This case highlights 180 and 300 minutes after INFS administration. Blood with NRS 0-10: no pain- worst imaginable pain). The that prescribing of opioids in cancer patients can pressure, peripheral oxygen saturation, and respiratory bowel function index (BFI), a patient-reported 3-item exacerbate pre-existing drug dependence. The use of rate were assessed five times during the two treatment index (NAS 0-100), was used to measure the bowel quicker onset opioids such as fentanyl lozenges and the periods. function. Additional gastrointestinal symptoms were new effervescent fentanyl tablet and nasal spray is likely Results: Among the 19 patients randomised and who assessed with a 5 point scale and quality of life using to make this an increasingly recognised problem as completed the trial, median age was 60.0 years (range the overall score (0 - 70 = no limitation - worst patients will enjoy getting the quick high sensation. 39.0 - 68.0). Mean fentanyl plasma concentrations limitation) for the 7 usual parameters. At trial Patients with a history of recreational drug use, other increased in a dose-dependent manner, peaking for all completion, doctors and patients assessed efficacy and dependence or a dependent type personality may be INFS doses 9-15 minutes after INFS administration. tolerability, additionally they assessed the tolerability of more susceptible and therefore a thorough history and Median Tmax values were 15, 12, and 15 minutes for the therapy compared with the previous therapy. screening should be undertaken. The question remains! the 50, 100, and 200 μg doses of INFS respectively. Results: In total 7836 patients with moderate to severe Mean values (SD) for Cmax were 0.351 (±0.226), 0. 595 pain were included in this study. 5849 were previously (±0.400) and 1.195 (±0.700) ng/mL for the three doses treated with a WHO step II or step III opioid. 1963 PE 2.S304 respectively. Over the entire 50-200 μg range Cmax patients were opioid- naïv before entering the study. appeared to increase slightly less than proportionally to The results of the subgroup analysis of the opioid- naïv Intranasal fentanyl spray (INFS) for relief of INFS dose. Six patients (31.6%) experienced adverse patients are presented here. Mean pain intensity of breakthrough pain in patients with cancer: events (AEs) during a treatment period, the majority these patients decreased after changing to PR Evidence of dose response being mild. Nausea and hypoxia (in two patients each) oxycodone/naloxone within the 4 weeks by 2.9 points. were the only AEs reported for more than one patient. The BFI decreased from ∅ 23.3±27.2 to ∅ 12.0±16.8. Nolte T1, Kaasa S2, Kaczmarek Z3, Oronska A4, Teglkamp Conclusion: INFS at doses of 50, 100, and 200 μg The percentage of patients with symptoms like nausea, K5, Sopata M6 showed a short venous Tmax and was well tolerated in vomiting and dizziness decreased strongly within 4 1Schmerz- und Palliativzentrum Wiesbaden, patients with cancer. The pharmacokinetic profile of weeks. Quality of life increased by more than 50%. In Wiesbaden, Germany, 2St Olavs Hospital, Trondheim, INFS strongly supports its use as a treatment for the final assessment, the vast majority of doctors and Norway, 3Oddzial we Wloclawk, Wloclawek, Poland, breakthrough pain. patients assessed efficacy and tolerance as “very good” 4Dolnoslaskie Centrum Onkologii, Wloclawek, Poland, and “good”. 5Nycomed, Roskilde, Denmark, 6Hospicjum Palium, Conclusions: Patients who have to be treated with an

Poznan, Poland PE 2.S306 opioid for the first time benefit from the strong efficacy sessions and the superior tolerability when treatment is started Aim: To examine the analgesic effect and tolerability of Advantages of oral opiates in complex cures of with PR oxycodone/naloxone. Additionally they sense a

three doses of intranasal fentanyl spray (INFS) of 50, patients with severe funcitonal dependence. A strongly improved quality of life. (Saturday) 100, 200 μg, for relief of breakthrough pain (BTP) in nursing view Acknowledgments: Supported by grants from patients with cancer. Mundipharma GmbH Germany. Poster Methods: This was a randomised, double-blind, Torres A1, Villegas E2, Tella M1, Esteve J3 placebo-controlled, crossover, multicentre trial 1Hospital Dos de Maig, Hospital at Home, Barcelona, involving adult in-/outpatients with cancer, receiving Spain, 2Hospital Dos de Maig, Internal Medicine, stable, chronic opioid who experienced BTP. The BTP Barcelona, Spain, 3Hospital Dos de Maig, Nursing episode was treated with INFS/placebo, with one dose Management, Barcelona, Spain in one nostril, from a pack containing eight numbered sprays randomly and evenly providing strengths of 0 Introduction: Patients admitted in a Hospital at (placebo), 50, 100 and 200 μg fentanyl per dose, for a Home Unit (HHU) can need nurse techniques for total of eight episodes. Pain intensity (PI) was recorded treatment of diverse ulcers and wounds than lead to the on an 11-point NRS up to 60 min after first dose, and use of intense analgesia during cures, including opiates

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 185 Poster sessions (Saturday)

PE 2.S308 a patient story is helpful. themselves less opioids by bolus option during the • Doctors and nurses use different language for night (10:01 p.m. to 06:00 a.m.; 69 mg; 25%) than Predictive validity of an abbreviated form of the describing pain. during the other two eight hour periods (06:01 a.m. to Edmonton Classification System for Cancer Pain Conclusions: This study provides original data that is 02:00 p.m. and 02:01 p.m. to 10:00 p.m.; 91 mg (33 %) (A-ECS-CP) in advanced cancer highly relevant to specialist palliative care. As advances and 116 (42%), respectively). In 8 out of 10 days there are made with new treatment options for BTP, the was a significant diurnal variation in opioid requests by Caraceni A1, Brunelli C1, Greco M T2, Montanari M2, multidisciplinary team must be included in training bolus option with significant lower requirement during Apolone G2, Knudsen A K3, Kaasa S3, in collaboration with and policy working groups. The language used and the night (p < 0.05; Friedman test). The median number EPCRC teaching methods may need to be adapted for different of delivered/undelivered bolus requests during the 1National Cancer Institute Foundation, Milano, Italy, members of the team. This is essential in order to night was 0-1/null, respectively. In the morning and 2Mario Negri Institute for Pharmacological Research, improve the management of BTP. during the afternoon period the median number of Milano, Italy, 3NTNU, Trondheim, Norway Funding: Educational grant from Cephalon UK Ltd. delivered/undelivered bolus requests was 1-4/0 and 0.5- 3/0 respectively. The aim of the present study is to evaluate the Conclusion: Opioid use in inpatients with cancer pain predictive performance of an abbreviated form of the PE 2.S310 treated with intravenous PCA shows a circadian pattern Edmonton Classification System for Cancer Pain , the with less opioid requirement during the night. It seems A-ECS-CP, in a population of advanced cancer patients. Percutaneous cordotomy for advanced cancer to meet individual opioid needs indicated by the huge Data analyzed come from a multicentre observational pain - Is it effective? interindividual variability in opioid consumption and cancer pain national study, involving 123 centres on a the rare event of an undelivered bolus request during sample of advanced cancer patients in which the A- Bellieu J1, McKenna E2, Hugel H1, Sharma M3, Goebel A3 lock out time. ECS-CP was applied at baseline evaluation. The A-ECS- 1University Hospital Aintree, Aintree Palliative Care CP is defined by two components only: the presence of Team, Liverpool, United Kingdom, 2Marie Curie the neuropathic pain and of incident pain. It assumes Hospice, Liverpool, United Kingdom, 3Walton Centre PE 2.S312 values from 0 to 2 indicating the number of pain for Neurology, Pain Management Unit, Liverpool, characteristics present. For each patient average pain United Kingdom The efficacy, tolerability and onset of action of intensity of the previous week was gathered at baseline, fentanyl pectin nasal spray (FPNS) with PecSys® and weekly for the 4 following weeks. On each occasion Background: Severe pain from mesothelioma and in the treatment of breakthrough cancer pain pain was defined as controlled if the average pain other unilateral cancerous pathologies can be difficult (BTCP): A multicentre, placebo-controlled, intensity of the previous week was ≤3 on a 0-10 NRS. to control with conventional pain management double-blind, two-phase crossover study Predictive validity will be evaluated as the capability of techniques. Percutaneous cordotomy has been thought the a-ECS-CP to discriminate patients in terms of two to be beneficial for some of these patients, however Portenoy R K1, Burton A W2, Wallace M S3, Rauck R L4, outcome measures: time needed to reach the first pain evidence for its effectiveness remains limited in this Galan V5, Taylor D R6, Fentanyl Nasal Spray Study 043 control and proportion of follow-up period with pain setting. Investigators Group controlled. Of 1801 consecutive patients enrolled in the Aim: To assess the effectiveness of percutaneous 1Beth Israel Medical Center, Neurology and study, 1696 (94%) had complete data on variables cordotomy in unilateral cancer pain. Anesthesiology, New York, United States, 2The examined and were then involved in this analysis. The Methods: Data is being collected prospectively for a University of Texas M.D. Anderson Cancer Center, A-ECS-CP classifies patients into three groups: Group_0 period of one year, from patients seen in the joint pain Department of Anesthesiology, Houston, United States, (neither neuropathic nor incident pain) 667 patients clinic between a District General Hospital Palliative 3UCSD Center for Pain Medicine, La Jolla, United States, (39%), Group_1 (neuropathic or incident pain) 729 Care Team and a pain management team from a 4Carolinas Pain Institute, Winston-Salem, United States, patients (43%) and Group_2 (both neuropathic and neurological tertiary referral centre. Data analysed 5Pain Center, Southern Regional Health System, incident pain) 300 patients (18%). These groups reach includes type of pain, pain scores, medication side Riverdale, United States, 6Georgia Center for Cancer their first pain control at different median times: 6, 8 effects, tolerability of the procedure and survival. Pain Management & Palliative Medicine, Marietta, and 14 days respectively for Group_0, Group_1, Results: (figures show data collected to date - further United States Group_2 and have different average percentage of results to be included and will be presented graphically follow-up period with pain controlled: respectively and in full colour). Aim: To assess efficacy and safety of a new nasal 63%, 55% and 44% (Kruskal-Wallis test: p=0.0001). The A total of (7) patients underwent percutaneous formulation of fentanyl (fentanyl pectin nasal spray predictive validity of the index shown by our results, cordotomy. 71% presented with severe, unilateral chest [FPNS]) in the treatment of breakthrough cancer pain indicates that a simple and easy tool such as the A-ECS- pain from mesothelioma. All patients had been tried on (BTCP). CP may be a useful instrument to be applied in daily strong opioids, and 70% admitted to suffering Background: BTCP affects most cancer patients; oral clinical practice. bothersome side effects due to their medication. The rescue drugs provide a time course of analgesia that average pain score prior to procedure averaged 7.5/10, does not match the typical time course of BTCP. FPNS and overall mean pain relief score following the has kinetics that should provide a more rapid onset of PE 2.S309 procedure was 8/10. pain relief. On the whole the procedure was well tolerated, with Methods: Patients (N=114) experiencing 1-4 BTCP How do nurses assess and manage breakthrough 86% experiencing a mild, temporary headache, and episodes/day while taking >60 mg/day of oral pain in specialist palliative care inpatient units? one patient having a transient episode of leg weakness. morphine (or equivalent) for cancer pain were entered A multi-centre study Overall, 86% patients felt the procedure had been into a randomised, placebo-controlled, double-blind worthwhile. The average survival of patients was 53 (DB) study (Archimedes CP043). Those who completed Alloway L1, Soden K2, Perkins P3, Ali S4, Barclay D5, Barker days, highlighting the late timing of referral for many an open-label titration phase (N=83) continued to a DB S2 patients. phase; 10 episodes of BTCP were treated with the 1North Hampshire Palliative Care Service, Basingstoke, Conclusion: Percutaneous cordotomy is effective in effective dose (7) or placebo (3). Pain intensity (PI; 11- United Kingdom, 2Priscilla Bacon Centre for Specialist the management of severe unilateral cancer pain in point numerical scale) and pain relief (PR; 5-point Palliative Care Services, Norwich, United Kingdom, 3Sue selected patients. There is a high acceptance of the scale) were measured at 5, 10, 15, 30, 45 and 60 min Ryder Care Leckhampton Court Hospice, Cheltenham, procedure from patients, and side effects are generally post-dose. The primary endpoint was the summed pain United Kingdom, 4The Martlets Hospice, Brighton, transient and well-tolerated. Awareness amongst intensity difference at 30 min (SPID30). Secondary United Kingdom, 5St Wilfrid’s Hospice, Eastbourne, clinicians should be raised to facilitate earlier referrals endpoints included pain intensity difference (PID) United Kingdom of suitable patients for this procedure. from baseline, PI and PR. Safety was assessed by adverse events (AEs) and both objective and subjective nasal Background: Breakthrough pain (BTP) is a common assessments. and debilitating problem. Increasing numbers of drugs PE 2.S311 Results: FPNS significantly improved mean SPID30 are available to treat this distressing symptom. The score compared with placebo (P<0.0001; modified nursing assessment is a vital part of symptom Circadian variation in opioid consumption in intent-to-treat analysis N=73) and provided significant management for inpatients. inpatients with chronic cancer pain - A PCA improvements in SPID from 10 min (P<0.01) to 60 min Aims: based study (P<0.0001). Significant differences in favour of FPNS • To gain understanding into how nurses working on were found in PI as early as 5 min (P<0.05). Similar inpatient specialist palliative care units assess and Schiessl C1, Schestag I2, Sittl R1 changes were seen with PID, with a trend at 5 min manage BTP. 1University Hospital Erlangen, Department of (P=0.07) that was significant from 10 min onward • To help overcome any barriers limiting the effective Anaesthesiology, Division of Pain Management, (P<0.01). PR was also significant from 10 min (P<0.001) management of BTP. Erlangen, Germany, 2University of Applied Sciences and at all time points to 60 min (P<0.001). Only 5.3% • To identify any specific training needs. Darmstadt, Faculty of Computer Science, Darmstadt, of patients withdrew from titration (1.2% in DB phase) Methods: Semi-structured interviews were conducted Germany due to AEs; no significant nasal effects were reported. with fifteen trained nurses (Bands 5 and 6), working in Conclusion: FPNS was efficacious, safe and provided 5 different inpatient specialist palliative care units. Aim: The circadian variation in opioid requirement is relatively rapid onset of analgesia in BTCP.

sessions These nurses had all worked in their unit for more than still under discussion. Sponsored by Archimedes Development Ltd. 6 months and were chosen at random, to enter the Methods: Retrospective data review over a 10 year study. Thematic analysis was used to look for emergent period (1997-2006) of all inpatients treated with

(Saturday) themes from the interviews. intravenous strong opioids via a PCA device at the Results: The most significant themes were: University Hospital Erlangen. Poster • BTP was not seen as a separate entity. Results: Of the 3631 inpatients provided with a PCA • Holistic assessment was deemed very important and system during the study period, 214 were treated due to can hinder specific assessment of the physical chronic cancer pain (not postoperative pain), 141 components of BTP. patients met the inclusion criteria and were eligible for • Nurses viewed themselves as the patient’s advocate. analysis. Their median age was 59 years (range16-83). • Nurses’ choices around which specific drug to use for Mainly they suffered from advanced gastrointestinal BTP depended on a number of physical aspects of care. tumours. 119 patients (84%) received morphine, 22 • Training was not mentioned by any nurse. (16%) piritramide. The mean cumulative 10 day-dose • Theoretical work on BTP needs to be translated into a per patient was 671 mg (median 470 mg; range 10 to nurse’s day to day practice. 2170 mg per patient and 10 day treatment period). In • Nurses report that being able to conceptualize BTP to the whole 10 day study period patients administered

186 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

PE 2.S313 control of the pain in less then 3 months with 4 or PE 2.S317 less drugs. Fentanyl pectin nasal spray (FPNS) with PecSys® The role of cordotomy in the management of provides most favourable mesothelioma-related pain in the United pharmacokinetic/tolerability profile compared PE 2.S315 Kingdom (The INPIC pilot study) (invasive with nasal chitosan-based fentanyl and oral procedures in cancer pain) transmucosal fentanyl citrate (OTFC) By the ladder or the knife? Are interventional pain techniques essential for the pain of Makin M K1, Ellershaw J2, Leach A3, Poolman M1 Watling M1, Fisher T2, Knight A2, Smith A3 mesothelioma? 1North Wales NHS Trust (East), Specialist Palliative Care 1Archimedes Pharma Ltd., Reading, United Kingdom, Team, Wrexham, United Kingdom, 2Marie Curie 2Archimedes Development Limited, Nottingham, Hough J1, Groves K1, Jones T1 Palliative Care Institute Liverpool, University of United Kingdom, 3Evicom, London, United Kingdom 1West Lancs, Southport & Formby Palliative Care Liverpool, Liverpool, United Kingdom, 3National Services, Southport, United Kingdom Refractory Angina Centre, Broadgreen Hospital, Aim: To select an optimal nasal formulation by Liverpool, United Kingdom comparing the pharmacokinetic/tolerability profiles of Background: Merseyside and Cheshire Lung Clinical three fentanyl nasal spray formulations with oral Network Group guidelines suggest that patients with We report on an NCRI-funded UK-wide pilot study on transmucosal fentanyl citrate (OTFC). mesothelioma should be referred early for the use of cordotomy in cancer pain and the potential Background: The nasal route offers the ability to interventional pain techniques rather than referring of using the proposed research methodology to study enhance fentanyl delivery and better match the time those for whom traditional analgesic titration, using wider topics in palliative care. course of breakthrough pain compared with oral the WHO ladder and appropriate adjuvants, have been Background: There are around 1800 new cases of delivery. However, conventional nasal fentanyl unsuccessful. In our local area those with difficult pain mesothelioma annually in the UK and the incidence is solutions are associated with variable and symptoms are referred to the Specialist Palliative Care rising. Symptom control is central to the management supratherapeutic maximum plasma concentrations Services (SPCS) who would then generally refer on to of patients with mesothelioma as the disease is often (Cmax). To optimise and modify absorption and reduce the Pain Relief Anaesthetic service for such associated with difficult pain syndromes resistant to Cmax, three nasal spray formulations have been intervention. The aim was to see whether this suggested pharmacological approaches. The National developed: fentanyl pectin (FPNS), fentanyl chitosan pathway would have been helpful for the patients we Mesothelioma Framework (UK 2007) indicated that nasal (FChNS) and fentanyl in chitosan-poloxamer 188 had seen. patients should have access to cordotomy as a palliative (FChPNS). Method: A retrospective review of all referrals to the intervention. Methods: This early Phase I, open-label, crossover SPCS over a five year period established the number of There is great inequity in service provision offering study (Archimedes CP037) was conducted in 18 healthy patients with mesothelioma which had been referred. cordotomy in the UK and the level of evidence to adult volunteers treated with naltrexone hydrochloride An audit of the clinical records of those with support provision is poor. The procedure may yield to block centrally mediated opioid effects. Subjects were mesothelioma established how many had pain which significant analgesic benefit, but there is an dosed on four occasions, separated by a ≥3-day washout was difficult to control or where interventional pain unquantified risk of associated morbidity. period, with the three nasal sprays (each containing techniques were considered due to failure of titration of Aims, design and funding: We received a NCRI Lung fentanyl citrate 100μg in 100μL) and OTFC 200μg opioids and adjuvants in the usual manner. Cancer SuPaC Research Award to according to a randomised sequence. Fentanyl venous Results: This poster displays the results of the audit - do a systematic literature review examining the plasma concentrations were measured before and up to compared with the current recommendations that all evidence-base on the use of cordotomy 24 hours post-dose. Tolerability was assessed by clinical patients with mesothelioma should be referred early for - use Consensus methodology (Delphi and Nominal nasal assessments and a nasal reactogenicity consideration of interventional pain techniques and Group techniques) to clarify the role of cordotomy, questionnaire. makes suggestions as to the suitability of this provide a benchmark for the availability and produce Results: Mean AUCs∞ for all nasal sprays were recommendation. national guidelines for use of this procedure significantly higher (P<0.05) than for OTFC; - in partnership with Industry to set up a National accordingly, Frel compared with OTFC was significantly Register (UK) for Cordotomy. greater for all nasal sprays (FPNS 132%, FChNS 154%, PE 2.S316 We anticipate that the study will produce a more FChPNS 122%). Median Tmax (FPNS 19.8 min, FChNS reasoned and robust governance framework to guide 10.2 min, FChPNS 15.6 min) was significantly The availability of pain controlling drugs in HIV clinicians and commissioners on the use of cordotomy (P<0.001) reduced (OTFC 90 min) and mean Cmax care facilities in Kenya: A multi-methods study in mesothelioma-related pain management. The significantly increased with all nasal sprays vs OTFC. benefit will be a more equitable and effective service FPNS had the lowest nasal reactogenicity symptom Harding R1, Penfold S1, Simms V1, Namisango E2, Downing provision for patients. The registry and subsequent incidence. J2, Powell R A2, Matoke R2, Ali Z3, Mwangi-Powell F2, registry reports will inform clinicians more fully on the Conclusions: Fentanyl from all nasal spray Higginson I1 outcomes of the intervention, and hence aid the users formulations showed significantly increased absorption 1King’s College London, Dept of Palliative Care, Policy in making informed choices. and reduced times to peak plasma values compared & Rehabilitation, London, United Kingdom, 2African If the methodology is successful, we plan to apply it to with OTFC. FPNS exhibited the most favourable Palliative Care Association, Kampala, Uganda, 3Kenyan other interventional procedures in the cancer pain tolerability profile. Hospice Palliative Care Association, Nairobi, Kenya management. The methodology also lends itself to Sponsored by Archimedes Development Ltd. study wider palliative care interventions on a national, Aims: Pain is prevalent throughout the HIV trajectory. and even international basis. This study aimed to determine the availability of pain PE 2.S314 controlling drugs in HIV care facilities in Kenya. Design and methods: This cross-sectional study used PE 2.S318 Management of neuropathic pain in cancer multiple methods to determine drug availability. 10% patients - Retrospective study of 600 HIV care facilities were randomly sampled. Self- Physical and spiritual pain assessment and its report surveys were conducted on site, and senior staff control adequateness among the end-of-life Pissarro C1, Coelho V2, Pazos I1, Gervásio H1 reported on availability of: strong opioids, weak patients receiving home-based palliative care in 1Instituto Português de Oncologia de Coimbra, opioids, non-opioids. Subsequently, pharmacy review Georgia Francisco Gentil, EPE, Oncology, Coimbra, Portugal, was conducted and the current levels, stock-outs in the 2Hospitais da Universidade de Coimbra, EPE, Pain previous 6 months, and expiration of drugs were Rukhadze T1, Kordzaia D1, Alibegashvili T1, Turkadze M1, Clinic, Coimbra, Portugal verified by the researchers who viewed stocks. Aladashvili T1 Results: Of the 60 sites, morphine was reported as 1Palliative Care Association ‘Humanists’ Union’, Tbilisi, Aims: To study the management of neuropathic pain available in 3 (0.05%) sites, and was found to be present Georgia in cancer patients. within expiration date in 1 (0.02%). No stock-outs in Methods: Retrospective study with collection of the previous 6 months were reported. Weak opioids Background: As there are over 43,000 deaths per year clinical records of cancer patients with neuropathic were reported as available in 16 (27%) sites, and were in Georgia, over 25,000 persons per year (60%) need pain having their first evaluation at the Pain Clinic in found to be present within expiration date in 23 (38%). palliative care. Palliative care and related pain relief are 2007. Neuropathic pain was considered on clinical Stock-outs in the previous 6 months were reported by one of the major unaddressed public health problems aspects. Pain was classified into five levels in a 11 sites (48% of those who stocked the drug). Non- in Georgia. Spiritual pain is also very common suffering qualitative scale: no pain; weak; moderate; severe; opioids were reported as available in 50 (83%) sites, and of end-of-life patients requires adequate assessment and maximum. 95 patients were included but only 85 have were found to be present within expiration date in 46 evaluation. the required data: 1 refused treatment and 9 died before (77%). Stock-outs in the previous 6 months were Aim of study: To evaluate the adequateness of follow-up evaluation. reported by 27 sites (54% of those who stocked the physical and spiritual pain assessment and control Results: From the 85 patients, 60% were male and 40% drug). among the home-based palliative care suitable patients female. Mean age was 61 (25 - 88 years). Conclusion: It is of significant concern that opioids in Georgia and analyze the ways of its improvement. The most frequent tumors were colo-rectal (18%), head were identified within so few HIV care facilities, Methods: Physical and spiritual pain assessment and

and neck (15%), lung (12%) and multiple myeloma particularly when specialist palliative referral centres their control adequateness were evaluated by using of sessions (12%). are so rare. Also, injectable morphine was the only especially worked out questionnaires. 250 59% of the patients have metastasis on the first formulation available in Kenya, therefore the WHO questionnaires filled by patients (and their family

evaluation. pain ladder could not be adhered to, and home members) curried by mobile team of Palliative Care (Saturday) Before treatment, the degree of pain was: weak (2%), maintenance of pain relief would be unfeasible. Weak Association “Humanists’ Union” (AHU) underwent to moderate (12%), severe (68%) and maximum (18%). opioids were more commonly available, but still in only analysis. Complete evaluation and relieve of physical Poster After treatment, the degree of pain was: no pain (52%), fewer than half the facilities. Even non-opioids were and spiritual pain was considered as an indicator for the weak (21%), moderate (25%) and severe (2%). unavailable for some, and frequently there were stock- successful control. The method of inferential statistics The time to achieve the better control of pain was less outs. The availability of pain controlling drugs, which was used. then 90 days in 69% of the patients. are cheap and effective, must be an urgent area of Results: During the 2006-2008 by the mobile team of In 69% of the patients the pain control was achieved clinical, funding and policy attention in order to AHU have been provided care of 236 end-of life patients with 4 or less drugs. respond appropriately and humanely to the HIV in Tbilisi. Physical and spiritual pain were revealed as Conclusions: Although neuropathic pain is hard epidemic in Africa. the one of most unresolved symptom for control to manage, in our population we could get good (p<0.0001). Its adequate assessment and adequate results: 73% of the patients had weak pain or no pain management was insufficient in 108 cases (43.9%). after treatment and 69% of the patients achieved Spiritual pain was assessed in one third of above

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 187 Poster sessions (Saturday)

mentioned patients, which was the result of an A total of 165 patients presenting disease-related and additional treatment including opioids was prescribed aggregate of events and choices, each dynamically treatment-related pain and other general symptoms to manage pain. We used a different opioid (fentanyl in related to the other. participated in the study. four cases and oramorph in one) and co analgesics to Conclusion: For medical professionals it is very To assess the reliability of the MDASI-A, separate provide analgesia enabling a clear distinction between important to clarify, assess and control adequately coefficients alpha were calculated for all items in the the treatment of pain and the treatment of addiction. physical and spiritual pain. instrument, for the symptom items, and for the In all cases pain relief was achieved to patient’s The problems of Physical and Spiritual Pain interference items (0.85, 0.78, and 0.79, respectively). satisfaction. On going symptom control was continued management of end-of life patients in Georgia should Factor analysis with oblimin rotation identified a two- either from outpatient clinic or in the hospice. be caused by lacking of: factor solution that is interpretable and that fits Conclusion: Adequate pain relief is possible in cancer 1) legislative bases, Harman’s test for model fit. Subscale validity was patients with drug addiction. Methadone maintenance 2) list and forms of opioids and their availability, examined using known group, based on the Eastern therapy is insufficient to provide adequate analgesia in 3) information shearing and Cooperative Oncology Group (ECOG) Performance this setting due to tolerance and additional treatment is 4) knowledge and experience of health care Status. necessary. Demands for increasing opioid doses need to professionals (to assess, evaluate and have adequate This Arabic version of the MDASI is a valid and reliable be carefully assessed to discern untreated pain from control). patient-reported outcome instrument that can be used potential drug seeking behaviour. among Arabic speaking cancer patients in Morocco. It could be routinely used for assessing multiple PE 2.S319 symptoms in cancer patients for a better oncology care. PE 2.S323

Continuous intravenous lidocaine mitigates Assessment of analgesia and adverse effects of chronic back pains caused by bed sores - A case PE 2.S321 controlled release tramadol and dihydrocodeine report in patients with cancer pain - Based on a Pain at third level controlled by rehabilitation modified ESAS Tsuchiya S1, Takinishi Y2, Itou T2, Shimada K2, Sakashita interventions for patients with advanced cancer A2, Takamiya Y3, Kinugasa E2 in palliative care unit Leppert W1 1Showa University Northern Yokohama Hospital, 1Poznan University of Medical Sciences, Poznan, Poland Internal Medicine, Yokohama, Japan, 2Showa University Abe P K1 Northern Yokohama Hospital, Yokohama, Japan, 1Chiba Cancer Centre, Ortopedic Surgery and Patients and methods: Open, prospective, 3Showa University, Tokyo, Japan Rehabilitation Oncology, Chiba, Japan randomised, cross-over study of 30 patients with nociceptive (visceral or somatic) cancer pain treated Background: A intravenous or subcutaneous infusion Research aim: It is important for dignity of human- previously with non-opioids who received tramadol (15 of lidocaine has been reported to alleviate opioid- being including advanced or far advanced cancer patients) or dihydrocodeine (DHC) (15 patients) in refractory pain. patient to move independently. Though it is easier to controlled release tablets for 7 days, then drugs Case: A 56 years old male was admitted to our hospital control at rest pain, but it is more difficult to move changed and administered for the next 7 days. for the purpose of pain control, with colon cancer, physically for activities of daily living. Therefore we Analgesia assessed by visual - analogue scale (VAS), accompanied with leg paralysis caused by multiple lung studied more controllable, comfortable or easy way of adverse effects by modified ESAS (Edmonton Symptom metastases/lumbar spine metastases. At the time of the moving physically for cancer patient under third level Assessment System) with two additional scales for admission, low back pain and severe numbness of of pain control in palliative care unit. constipation and vomiting. Starting doses: tramadol lower extremities were accompanied, caused by lumbar Study design and method: We selected one hundred 100 mg, DHC 60 mg both twice daily, titrated to spine metastases. After the admission, NSAIDs, eighty four cancer patients in palliative care unit in our satisfactory analgesia. continuous subcutaneous injection of morphine and institute from April 2003 to March 2008. Most patients Results: In both groups decrease of pain intensity, ketamine, and steroid, antidepressant were started to be were already under rest pain control, but they had better analgesia with DHC. After study completion 19 administered, and the pain was extinct. On Day 28, strong request to success physical activities for their life patients preferred DHC, 4 tramadol, 7 assessed both however, as the metastatic lesion of lumbar spine with no pain or at least mild light pain. We used new drugs equally effective. In DHC group patients reported increased gradually, paralysis of the lower extremities approach of rehabilitation interventions under new in the first 7 days less dyspnoea, in the second week progressed, making self-orientation of the body theory which consists of three principles, such as slow more constipation and trend towards more drowsiness, difficult, and accompanied with it, a pain of the part movement, small step and using instruments for more activity in the first week and better sensation of where the body touched the bed appeared, making breaking up their body weight. well-being during both weeks, tramadol caused more sleeping during the night difficult. The pain remained Results: Most of the patients could move by nausea during both treatment weeks. No differences in despite of use of the body-pressure-spreading bed, themselves with no pain or much less pain. In other appetite and vomiting observed, in first week patients careful care of the skin in the contact area, and words, they had no need of rescue medication for treated with DHC were less anxious and less depressed. treatment of changing body position, with the activities of daily living. Then they could stand up, walk Serious adverse effects (respiratory depression, allergy Numerical Rating Scale(NRS) of 6/10. Although alone or sitting down in their right places with pleasure for drugs) not observed. increasing the dose of morphine or ketamine was because they had no pain or much less pain with any Conclusions: Tramadol and DHC in controlled release performed, strong sleepiness appeared, forcing to go movements. As increasing movement level, it was tablets are effective analgesics in nociceptive cancer back to the original dose. Because of the situation, parallel to improve quality of life level as well. pain. No serious adverse effects observed, more continuous intravenous infusion of lidocaine was Conclusion: It was useful and helpful to adapt our constipation in DHC group indicates for prophylactic considered and an administration of 100mg/day was approach for advanced cancer patient under rest pain use of laxatives whereas more nausea in tramadol group started. However, as low blood pressure was observed in control. It’s not only for the patients to move with no is an indication for prophylactic antiemetic 2-3 hours after the administration, it was reduced to pain but also for carers or staffs to prevent severe back administration. Equianalgesic single doses of tramadol 50mg/day immediately. On Day 34, Since then, gradual pain at clinical settings. We were very happy to spend to DHC according to 10:6 ratio rendered satisfactory improvement of the pain was observed with the NRS more comfortable or calm life with patients in analgesia. improved to 2/10 next day and with having a good palliative care unit. sleep as well. Afterwards, he achieved effective pain controlled until he died on Day 46. This condition was PE 2.S324 able to be maintained until the patient passed away on PE 2.S322 Day 46.[Conclusion] This case suggest that continuous Optimizing the control of severe cancer pain: intravenous infusion of lidocaine seem to be effective Painful dilemma: Managing cancer pain in Add on therapy in stead of rotation of strong and safe treatment for bedsores. patients with drug addiction opioids

Vora V A1, Farrington C2 Van den Eynde J1 PE 2.S320 1Sheffield Teaching Hospitals NHS Trust and St. Luke’s 1Network Palliative Care, Sint-Niklaas, Belgium Hospice, Palliative Medicine, Sheffield, United Validation of the Arabic version of the M. D. Kingdom, 2Sheffield Teaching Hospitals NHS Trust, Aim: To evaluate the effect of the combination of two Anderson Symptom Inventory (MDASI-A) in the Palliative Medicine, Sheffied, United Kingdom opioids with a different MOR agonistic spectrum - moroccan cancer patients Buprenorphine TTS (BUP TTS) and Fentanyl TTS (FEN Background: Effective pain management in cancer TTS)- on pain scores in patients with severe cancer pain. Nejmi M1, Bentalha A2 patients with a history of substance abuse can be Secondary: evaluation of the slope index of the opioïd 1Ministery of High Education, Oncology Hospital, complex and highly challenging. dose curve. Rabat, Morocco, 2University Mohamed V, Aim: Review management of pain in cancer patients Background: Most guidelines tell us to avoid the Anesthesiology Reanimation, Rabat, Morocco with a history of drug addiction referred in the last two combination of strong opioids because of possible years to the hospital specialist palliative care team antagonism. Searching in pharmacological literature we The purpose of this study was to demonstrate the (HSPCT) with a view to producing local guidelines. found lot of arguments to combine opioids in order to

sessions validity and reliability of the Arabic version of the M. D. Method: Retrospective case note review of cancer get an additive effect. Anderson Symptom Inventory (MDASI-A). This patients with a history of drug addiction referred to our Methods: Cancer patients were treated with FEN TTS. instrument is an Arabic translation of the MDASI, also team for pain management. The following data was The dose was up titrated in proportion to the pain

(Saturday) known as the MDASI-Core, a multisymptom assessment extracted and collated: age, gender, diagnosis, type, site score. When the normal increase of dose did not give tool developed by Cleeland et al., in 2000, validated in and intensity of pain, drug addiction history, details of the expected decrease in pain score, we didn’t rotate to Poster cancer patients. A focus group of healthcare maintenance therapy used for treating addiction, an other opioid, but FEN TTS was diminished to the professionals and native Arab translators who were cancer treatment and pain management. previous dose (=inclusion dose) and BUP TTS was fluent in English used a forward-backward method to Results: 5 cancer patients with a history of drug added in an equivalent dose. develop this Arabic version. Results of the psychometric addiction were referred to HSPCT. Age range was 28-58 Results: 7 pts are already included an evaluated, a validation are reported, as well as the prevalence and years. All except one patient were ex-abusers. Four larger recruitment is ongoing. Starting doses FEN/BUP severity of symptoms in a sample of patients with patients were on methadone; the dose varying from 30 varied from 25μg/17.5μg to 200μg/105μg (av. 65/42.5). advanced cancer in Morocco. mg-160mg per day and one patient was on 10 mg Doses FEN/BUP at study end varied from 25μg/17.5μg to The study was conducted at the Pain Treatment Center sublingual Buprenorphine as part of maintenance 200μg/140μg (av.67.9/52.5). Observation period varied of the Institute of Oncology in Rabat, Morocco, in therapy for addiction. All patients had a mixture of from 3 to 20 wk (av.10wk). collaboration with researchers at The University of nociceptive and neuropathic pain. Maintenance Pain scores could be kept under 3, by titrating the doses Texas M. D. Anderson Cancer Center in Houston, Texas. therapy for addiction was continued in all patients and of FEN: 4.5% increase, but mainly by titrating the doses

188 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) of BUP: 24% doses increase. (VAS 2-3), and after one month we suspended respiratory depression. The aim of this study was to Conclusion: Instead of the general believe that Gabapentin. evaluate the drugs used in patients with disseminated combination of strong opioids is to be avoided, we find Discussion: Recently Gabapentin has been proposed cancer to determine the combinations which no clinical evidence of antagonism, but we find an in the setting of the postoperative acute pain potentially cause the highest risk of clinically better pain control by combining two opioids with a treatment,in adult. The neurophatic and symphatetic significant interactions. different spectrum. There was a longer steady state system can be involved often in children and We analyzed data of 100 patients cared by home care without up titration of the doses. This opens new adolescent, apparently without an objective reason. We team in Poznan. All the drugs with the focus on possibilities to treat severe cancer pain. More research is consider physiotherapy and psychological intervention substrates and precipitants of main isoforms of CYP 450 needed, so this abstract is a call for other investigators important keys of treatment, as part of the (3A4, 2D6, 2C9, 2C19, 1A2) as well as the potential to set up a trial to optimize the combination and multidisciplinary approach to pain in children and clinically important combinations were described. conversion rate. adolescent.No source of funding was obtained for the In the group of patients (41 men and 59 women aged study. 29-93, mean 68) cared for a medium of 66 days as much as 1-9 ( mean 4) substrates or inhibitors and PE 2.S325 inducers of main CYP isoforms were prescribed. Oral PE 2.S327 and subcutaneous morphine known to be metabolized Pamidronate is effective with analgesics in primarily by glucuronidation was the most commonly cancer pain treatment in patients with bone Opioid medication in hospice - Often too much? used strong opioid. However, codeine and tramadol, metastases - Two centers experience which opioid activity is influenced by coadministration Falckenberg M1, Schele H2 of eg. haloperidol or SSRI, was used in 59%, and Leppert W1, Rolski W2 1Schmerzambulanz Alten Eichen, Hamburg, Germany, fentanyl significantly influenced by multiple 1Poznan University of Medical Sciences, Chair and 2Gemeinschaftspraxis Aneasthesiologie, Kiel, Germany coadministrated drugs was second strong opioid used Department of Palliative Medicine, Poznan, Poland, 2M. in the group. The other orded drugs were: midazolam Sklodowska-Curie Memorial Cancer Centre and The aim of this prospective study was to assess the and other CYP-metabolized benzodwuazepines (54% Institute of Oncology in Warsaw, Head and Neck indication for opioids and quality of cancer pain pts), omeprazol (52% pts) dexamethason (48% pts), Cancer Department, Warszawa, Poland control at the end of life in patients submitted to a haloperidol, promazine derivatives, anti-epileptics, hospice. TCA, SSRI, methadone, antibiotics. Additionally 38% of Aim of the study: To assess analgesia and tolerance of 80 patients of two hospices were overviewed from the patients continued to take medication due to pamidronate in cancer patients with painful bone beginning of their stay in the hospice for the next two concurrent diseases (beta-blokers and amiodaron metastses. weeks; the monitoring was designed to investigate the among others). Patients and methods: One hundred cancer patients morphine doses and indications in patients that were Managing symptoms in patients with advanced cancer with osteolytic bone lesions and bone pain of severe submitted to a hospice. In the following two weeks employ drugs that may cause major interactions. While intensity (over 6 on 11-point numerical rating scale their opioid medication including rescue medication we need to make efforts to limit the number of drugs (NRS: 0 - no pain, 10 - the strongest pain). Patients and pain intensity was monitored. and avoid those which may produce undesired treated with 2 h intravenous pamidronate infusion In more than 50% the Opioid medication has to be interactions we may additionally limit the risk by (Pamifos®and Aredia®, dose 30 - 90 mg in 500 ml 0.9% changed subsistentally during the next days in patients titration of a new drug and closely monitoring the NaCl), every 3 - 4 weeks provided creatinine level under administered to a hospice. In some cases of overdosing patients. Pharmacokinetic surveys in the field of 2 mg%, calcium level normal/exceeded. All patients side effects were remarkable and had not been symptom control are awaited. also treated with other analgesics (non-opioids, recognized in the right way before. opioids), 30 radiotherapy, 10 hormone therapy, 4 There is much variation and even inappropriate chemotherapy. Analgesia assesssed after administration indication for morphine use in end of life diseases. PE 2.S330 at least 2 pamidronate infusions (total 2 - 16 doses). Treatment continued till end of life or completed in Quality of life in patients treated with controlled case lack analgesia or significant patients deterioration. PE 2.S328 release dihydrocodeine and tramadol - Results of Results: In 76 patients good analgesia (at least 2 points a prospective, randomised, cross-over study decrease in pain intensity) or less than 4 on NRS. In 12 Methadone in opioid rotation - Experience from patients partial effect (at least 1 point decrease of pain Poland Leppert W1, Majkowicz M2 intensity) or 4 - 5 on NRS. In 12 patients no benefit, 1Poznan University of Medical Sciences, Poznan, treatment terminated. Tolerance of treatment good, no Leppert W1 Poland, 2Medical University of Gdansk, Quality of Life severe adverse effects, the most common: temporary 1Poznan University of Medical Sciences, Chair and Research, Gdansk, Poland fever (20 patients), headache (8), intensifying bone Department of Palliative Medicine, Poznan, Poland pain (6). Symptoms did not cause pamidronate Aim of the study: Assessment of analgesic efficacy, cessation, disappeared within 1 day without treatment. Aim of the study: To assess analgesia, adverse effects side effects and quality of life (QL) during Local reactions 6 patients, 10 asymptomatic calcium of methadone, calculation equianalgesic dose ratio of dihydrocodeine (DHC) controlled release tablets 60, 90, level decrease, 6 creatinine level increase. oral morphine to methadone. 120 mg and tramadol controlled release tablets 100, Conclusions: Pamidronate intravenous infusion every Patients and methods: Twenty five opioid - tolerant 150, 200 mg administration in patients with cancer 3 - 4 weeks in dose 30 - 90 mg is effective in bone pain patients with severe cancer neuropathic and bone pain pain. combined with analgesics and cancer therapy, (NRS > 5) not responding to morphine (16 patients), Patients and methods: Thirty opioid - naive patients treatment well tolerated with no serious adverse effects. transdermal fentanyl (TF) (6), tramadol (2), and with nociceptive pain (VAS>40), randomised, cross - pethidine (1). Dose ratios of daily doses of oral over, 7 days each analgesic without wash - out. QL morphine (ddom) to daily doses of oral methadone assessed by EORTC QLQ C 30 three times: before PE 2.S326 (ddomet): 4 : 1 (ddom to 100 mg), 6 : 1 (ddom 101 - 300 treatment, after 7 days (before drug change) and after mg), 12 : 1 (ddom 301 - 1000 mg), 20 : 1 (ddom over treatment completion. Results analyzed by ANOVA in Use of Gabapentin in a girl with vincristine 1000 mg). Previous opioids stopped in 21 patients, 4 case of significant differences in main effects further induced neuropathic pain treated with methadone and other opioids. Mean analysis by LSD test. equivalent ddom before methadone switch 811 ± 466 Results: In functional scales significant differences Rizzo G1, Rosano G1, Ananiadou S1, Di Cataldo A2, mg. Methadone administered 3 times daily, 24 patients were observed in emotional functioning and in global D’Amico S2, Astuto M1 receive methadone orally, 1 rectally in suppositories. QL (treatment time, interaction of drug and treatment 1Policlinico University of Catania, Anesthesia, Catania, Breakthrough pain treated with methadone (half time) - better results in DHC group. Similar results were Italy, 2Policlinico University of Catania, Oncology, regular dose), morphine, fentanyl, metamizol, near significance in physical functioning and role Catania, Italy ketamine. functioning (treatment time, p = 0.06) and in cognitive Results: Treatment time 37.3 ± 26.1 (range 3 - 95) days, functioning (interaction of drug and treatment time, p Introduction: Neuromuscular toxicity of vincristine is daily dose range 9 - 400 mg, mean daily doses 46.1 ± = 0.052). well known, and the treatment neuropathic pain 18.6 beginning, maximal 145.5 ± 102.1, 125.1 ± 101.3 In symptom scales the most significant differences in derived from its action can be a challenge especially in mg end of treatment. Good analgesia (NRS < 4) 13 favour of DHC in pain (treatment time, interaction of children. patients, partial (NRS 4 - 5) 9, unsatisfactory 3 (NRS > 5) drug and treatment time, p<0.001), fatigue (treatment Methods: We describe a case of severe neuropathic stopped methadone. Adverse effects: drowsiness (7 time, p<0.036), interaction of drug and treatment time, pain associated with intravenous Vincristine (VCR) patients), constipation (5), nausea and vomiting (2), p<0.01), nausea and vomiting (interaction of drug and administration in a 14-year old girl, weight 50kg with a one respiratory depression disappeared after naloxone treatment time, p<0.001). The most significant diagnosis of T-cell Lymphoblastic Lymphoma, was on administration and methadone cessation. difference in favour of tramadol in constipation treatment according with protocol Euro-LB 02. Fifteen Conclusions: Results confirmed high analgesic (interaction of drug and treatment time, p<0.001). days after the 4th dose of VCR, she presented with mild efficacy, acceptable adverse event profile of methadone Slight differences in appetite (p<0.039) and financial weakness, allodinya, hyperalgesia on her left foot and and effectiveness of dose calculation. Strict patients problems (p<0.023) observed, no differences in ankle. On the following days, her pain worsened on monitoring is mandatory especially for the first days dyspnoea.

both feet and ankles. She had difficulties extending her after rotation to methadone. Conclusions: DHC and tramadol in controlled release sessions fingers, walking and dressing. The pain intensity was 8- tablets are effective analgesics in nociceptive cancer 9, according with the Visual Analog Scale. The pain, DHC provided better analgesia. QL results showed

neurological examination was normal, all deep tendon PE 2.S329 better analgesia and global QL in DHC group, more (Saturday) reflexes were present. There was a moderate loss of intense nausea and less constipation in tramadol group. sensory modalities in her left foot. The patient had Drug interactions in hospice patients- The Tolerance of treatment is good in both groups with no Poster been physically active for all her life. A lumbar puncture advantage or a serious trap? serious side effects like respiratory depression or allergy revealed a normal pressure and normal cerebrospinal for the drug. fluid. Magnetic resonance imaging (MRI) of the brain Kotlinska-Lemieszek A1 and the spine was normal. The treatment consisted of 1Poznan University of Medical Sciences, Palliative Care Gabapentin PO 100mg, three times a day, for five days; Chair and Department, Poznan, Poland 200 mg three times a day for other five days, continuing with 300mg three times daily for one Drugs interactions either pharmacodynamic and month. She also started physiotherapy and she received pharmacokinetic may be of great value in pain and psychological support. other symptom management. However, unrecognized Result: After 15 days of therapy her pain decreased may produce a real danger eg. deep sedation and

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 189 Poster sessions (Saturday)

PE 2.S331 stage of disease, using their skills in controlling severe motivated to engage in other activities, e.g., painting or pain and other symptoms. They could employ their writing. The latent (interpretative) focus was on The Edmonton Classification System for Cancer skills to use ketamine similarly in acute pain situations. profound existential changes. The visits to the zoo Pain (ECS-CP): A prospective study in patients In experienced hands IV followed by SC ketamine can symbolise health and hope. with advanced cancer who were referred to an be safely given in an inpatient setting to patients with Conclusions: Psychosocial support in the form of inpatient hospice unit (IHU) and an acute cancer related pain with rapid effect, enabling urgent visits to the zoo is provided not only to ill children but tertiary hospital (ATH) setting investigations and potentially life prolonging or also to children who went through successful palliative treatments to be given. treatment. The program includes also families, whose Lawlor P G1, McLoughlin K2, Ryan R3, Stone C2, Mason C2, Funded by local hospital. children died. I believe that this activity brings positive O’Siorain L1, Beatty S3, Wilkinson R3, Corcoran C3, Higgins outcomes in the mental condition of the children and S2, Nekolaichuk C4, Fainsinger R4 of the people who accompany them. 1Our Lady’s Hospice and St. James’s Hospital, Dublin, PE 2.S333 Ireland, 2Our Lady’s Hospice, Dublin, Ireland, 3St. James’s Hospital, Dublin, Ireland, 4University of Hyperalgesia and opioid switching in a patient PE 2.S335 Alberta, Edmonton, Canada with a neuropathic cancer pain Palliative care for children and adolescents in Aim: To test in an Irish setting the hypothesis that Noguera Tejedor A1, Zuriarrain Reyna Y1 German-speaking Switzerland: A needs analysis underscored the development of the ECS-CP: more 1Hospital Centro de Cuidados Laguna, Unidad de across three diagnostic groups complex cancer pain syndromes require longer to Hospitalizacion, Madrid, Spain achieve stable pain control, and require more intense Inglin S1, Hornung R1, Bergsträsser E2 treatment regimens. Introduction: The underlying pathogenesis of 1University of Zurich / Department of Psychology, Methods: This was an extension of an international neuropathic pain is very complex. Opioids are the gold Social and Health Psychology, Zurich, Switzerland, multicentre study of the ECS-CP at two sites in Ireland, therapy for the treatment of moderate to severe pain 2University Children’s Hospital Zurich, Department of an IHU and an ATH. The ECS-CP was completed by but accumulating evidence suggests that opioids also Oncology, Zurich, Switzerland palliative care clinical nurse specialists or physicians. may cause opioid-induced hyperalgesia (increase in Data were collected regarding anxiety and pain pain sensitivity with upregulation of pronocioceptive Parents caring for their child with a life-limiting illness intensity, the number of daily opioid breakthrough pathways). are confronted with a multitude of demands and have (BT) doses and adjuvants used, and the parenteral Case report: A 44 - year-old- man with a tremendous needs for support from health care morphine equivalent daily dose (MEDD) at initial multirecidivant thoracic sarcoma to the right armpit, professionals. Research on pediatric palliative care encounter, and on the first day of stable pain control. supraclavicular (Braquial plexophaty) and laterocervical (PPC) in Switzerland is still in its infancy. To better Stable pain control was defined as <3 BTs per day or zone (cervical nerves) was evaluate in our palliative care develop concepts for PPC services, perceptions of care pain intensity of 3/10 or less. Time to stable pain outpatient service for pain control. He was with of affected families need to be examined. International control in days was calculated in relation to the ECS-CP transdermal fentanyl, corticosteroids and gabapentin studies on PPC often include only one group of and other variables, and then used as an event in a with regular pain control. He has admission to the diagnosis, e.g., mainly cancer, and are therefore not Kaplein-Meir survival analysis and a Cox regression palliative care unit after 2 weeks and 1º switch to able to define differences in the needs of affected model. methadone because of the poor pain control and 1º families with children suffering from neurological Results: Pain was present in 296/367(80.6%) of started hyperalgesia. He 2º present hyperalgesia because disorders or heart diseases. The purpose of this study patients. Stable pain control occurred in 157/296 of a rapid scale with methadone. We use in a 2º time was to identify the needs of parents caring for a child (67%). Neuropathic pain (NP) was identified in 50/296 Ketamine for 3 days and decrease methadone dose with a life-limiting illness depending on the diagnostic (16%). In the Kaplan-Meir survival analysis, time to presenting better pain control for one week, after this group. stable pain control was longer with NP(p<0.001), we slowly increase methadone, presenting Parents from three equally sized groups of diagnoses (n incident pain(p=0.023), psychological distress cardiorespiratory toxicity after 3 weeks. 3º switch to a = 15) were interviewed: (p=0.005), age<60 (p<0.001), a history of drug or regional analgesia with inthratecal delivery of (a) cancer, alcohol abuse (p=0.02), normal cognitive function morphine and low concentration of bupivacaine with (b) neurological disorders, and (p=0.01), severe pain intensity (p<0.001) and an MEDD acceptable pain control but started an urinary (c) non-cancer/non-neurological conditions (e.g. heart of >44mg on initial assessment (p<0.001). In the retention. 4º switch with morphine iv with maintained diseases or metabolic disorders). multivariate Cox regression model age and ketamine, NSAIDs iv and oral baclofen, with this Interview questions regarded aspects of PPC such as NPconsistently demonstrated an independent treatment has the better pain control during long time communication with professionals, needs for support asociation with longer time to stable pain control, but finally present for 3º time hyperalgesia without in the care at home or in the hospital, and bereavement generating Hazard Ratios [95% confidence intervals] of opioids toxicity and became the last 5º switch to care. Eligibility criteria were: active PPC at the time of 0.63 [0.45-0.88] and 0.42 [0.23-0.75], respectively. fentanyl iv and terminal sedation with mydazolam iv data collecting and child’s age between 1-18 years. Neuropathic pain, incident pain, psychological distress, and propofol iv Families whose child had died no more than two years and younger age were associated with higher final Conclusion: The exact mechanism of hyperalgesia ago were also included. MEDD. with opioids toxicity or without opioids toxicity is Parents of children with neurological and metabolic Conclusion: These findings are consistent with those unclear. It most be suspicious in patients who despite disorders expressed their needs and concerns in terms obtained by the Edmonton group and highlight the escalating doses of opioids has worsening pain. of an interdisciplinary care team. In Switzerland, merits of comprehensive multidimensional pain Successful strategies that may decrease or prevent psychologists and social workers in hospitals support assessment. opioid-induced hyperalgesia include the concomitant children with cancer and their families, whereas administration of drugs like NMDA-antagonists, children with neurological or metabolic diseases lack NSAIDs or opioid switch. this support. Parents of children with cancer PE 2.S332 emphasized their need for an easy accessible and continuous bereavement care. Intravenous ketamine for procedural pain in PE 2.S334 Acknowledging the needs of parents caring for a child cancer patients with a life-limiting illness may lead to a better Psychosocial support for children and their understanding of the different challenges for families Boland J1, Cachia E1, Vedder R1, Ahmedzai S H1 families and promote PPC services. 1University of Sheffield, Academic Unit of Supportive The study was funded by the Swiss foundation Pro Care, Sheffield, United Kingdom Macková M1 Pallium. 1Masaryk University, Medical Faculty, Department of During diagnosis and treatment, patients with cancer Nursing, Brno, Czech Republic often undergo painful procedures, adding to the pain PE 2.S336 caused by the disease itself. Poorly managed procedural Background: Malignant tumours are routinely pain may prevent investigations and limit the ability to diagnosed also in children. The results of their therapy The families’ point of view on the respite offered palliate or cure the cancer. are not dependent only on biological treatment, also in a children’s hospice Ketamine is both an analgesic and at higher doses an the mental condition of the child and his/her social anaesthetic. It can be used when patients develop environment play an important role. Every month, the Mongeau S1, Champagne M2, Trudel M3 opioid tolerance or hyperalgesia because it reverses the patients of the children’s oncology department in Brno 1University of Quebec in Montreal, School of Social central N-methyl d-aspartate (NMDA) driven visit the zoo with their parents and the nursing and Work, Montreal, Canada, 2University of Quebec in mechanisms. There is an extensive literature for using medical staff. The visits motivate the children to engage Abitibi-Temiscamingue, Department of Health ketamine for refractory pain. in various other activities, e.g., painting pictures. This Sciences, Rouyn Noranda, Canada, 3University of We describe 4 cases where IV ketamine was used by a program has been running for ten years already. The Quebec in Montreal, School of Visual and Media Art, palliative medicine team to good effect in patients who aim of the study was to get feedback from the parents Montreal, Canada were unable to have critical investigations or treatment whose children were included in the program.

sessions because of severe uncontrolled pain which was limiting Method: Twenty mothers and sixteen fathers of Problem: Even if respite is recognized as a their ability to lie flat or be moved. These patients were children with cancer were interviewed individually fundamental element in paediatric palliative care, very already on high doses of opioids and other analgesics using a semi-structured interview guide. The interviews few studies have examined the practices that concern

(Saturday) and some cases demonstrated significant opioid were tape-recorded for subsequent verbatim respite in children’s hospices. toxicity. IV ketamine acts within minutes and can thus transcription. The data were analysed by the author Aims: Poster be carefully titrated to effect. Our practice is to give using a qualitative content analysis without any 1) To better understand the meaning families give to 2.5mg every 2 minutes until pain is controlled, without predetermined categories. Both a manifest focus and a respite practices that are set up in children’s palliative causing sedation. As ketamine has a half life of 1-3 latent focus were used. care hospices. hours, it will give good analgesic cover for most Results: The analysis revealed four manifest 2) To analyze the outcomes of these practices on procedures. Psychotropic toxicity such as hallucinations (descriptive) main categories: enjoyment, different family members. can be prevented by pre-medicating the patient with a communication, relationship, and motivation. The first Methods: To meet the objectives of the study, the neuroleptic such as haloperidol. In cases of previous category had been expected: most people, either symbolic interactionnism theoretical framework and a opioid tolerance we continue the ketamine by healthy or not, describe the visit to the zoo as pleasure qualitative methodology of a participative type were subcutaneous infusion for 5-7 days. or leisure. Visits to the zoo also improve used. The data was collected with the help of many Palliative medicine physicians are increasingly involved communication and reinforce the relationship between sources: semi-structured interviews with the parents with both cancer and non cancer patients at earlier children and the health care staff. Children are who turned to the respite program in a children’s

190 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) hospice (N=24 mothers and 8 fathers), individual Methods: A survey was sent to the parents of children patients developed severe dyspnoea attacks, 3 interviews with children who benefited from respite seen by the palliative care team of a tertiary pediatric tetraparesis, 1 child went blind abruptly, 1 copremesis stays in the hospice and who could express themselves university hospital between January 2001 and and 1 superior inflow congestion. In 3/23 cases an verbally (N=10), participant observation periods of September 2006. emergency physician was called for. Only 2 patients about three hours each in the hospice (N=20), and the Results: Out of 95 families, 52 were located and 35 had to be readmitted to hospital. consultation of intervention tools. To analyze the responded. Seventy-six per cent (76%) thought that the Conclusions: The observed critical situations could be gathered data, we used thematic analysis. meeting with the palliative care team was held at the controlled either via order by phone or intervention at Results: The parents appreciated the fact that their right time. None of them felt that the meeting should home. To prevent unacceptable exacerbation or re- point of view and their child’s point of view were taken have taken place later. Sixty-seven per cent (67%) of the hospitalisation an anticipatory planning, detailed into account in the course of the organization and the participants believed that it would have been helpful or parental information and 24 hour on-call duty by a carrying out of the stay. Significant bonds can be very helpful to have met the team earlier. Forty-five per paediatrician is mandatory. The needs and wishes of created between families, the personnel and the cent (45%) of the parents considered that they had not the children, adolescents and their families must be volunteers. The respite stays can contribute to lessen been correctly prepared for transition to palliative care. considered. the fusion between the parents and the sick child. They Most of the families said they would have found it allow the parents to renew their energy, to regain hope helpful or very helpful: if the physician had informed and to concentrate on their other children. The stay them of the existence of the palliative care team very PE 2.S341 allows the child to be stimulated in different ways and early on so the parents could choose when to meet the by different people. team (79%), if the physician had himself dealt with the A situational diagnosis to analyse the reasons for Conclusion: Respite stays have positive effects on all of risk of death earlier on (79%), and if written referrals for consultation by a Paediatric the family members. However, the parents point out information on the palliative care team had been Palliative Care Team that they must relearn how to take advantage of time handed out on diagnosis (64%). The initial meeting for themselves. with the palliative care team was followed by an Kiman R J1, Requena M L1, Varela M C1 improvement in the patient’s quality of life in 48% of 1Hospital Posadas, Materno-Infantil, El Palomar, the cases and a deterioration in only 3% of the cases in Argentina PE 2.S337 spite of the progression of the disease. Conclusion: The fear of harm should not be an The Paediatric Palliative Care Team (PPCT) was created Re-moving mountains: An exploration into the obstacle to early frank communication about the risk of in 1996 as part of the Oncology Team, mainly to respite needs of adolescents/young people with death and the possibility of being supported by a provide care to children with cancer. After 10 years, life-limiting conditions as perceived by them, pediatric palliative care team. PPCT redefined its profile to manage also non- their parents and professionals from the Research funded by “Centre d´excellence en soins oncological patients. Cultural, educational and multidisciplinary paediatric palliative care team palliatifs pédiatriques du CHU Sainte Justine”. subjective barriers to provision of PPC were identified in our institution. After the first year of work, PPCT Maguire H1, Smith M2 wanted to perform a situational diagnosis in order to 1Northern Ireland Children’s Hospice, Children’s PE 2.S339 review the goals of the team. The Aim of the study was Community, Newtownabbey, United Kingdom, to describe and analyse motives behind referrals for 2University of Ulster, School of Nursing Jordanstown, Experience of 2? years specialised paediatric consultation made by paediatricians to PPCT within Belfast, United Kingdom palliative home care service our institution. Material and methods: Descriptive study. A total of Aim: This study aimed to explore the respite needs of Kuhlen M1, Richter U1, Balzer S1, Friedland C1, Janßen G1 218 reasons for referrals for consultations, relating to adolescents/young people with life-limiting conditions 1Hämato-Onkologische Pädiatrie, Duesseldorf, 139 patients aged from 0 to 18 years old were studied as perceived by adolescents/young people, their Germany between months of August 2006 and August 2007. parents/carers and professionals from the Results: 218 reasons for referrals for consultation by multidisciplinary palliative care team. Objectives: To determine requirements and feasibility PPCT from paediatric residents, internist and specialists, Background: Medical and technological advances for palliative home care in paediatrics. working in wards or with outpatients were analysed and have increased the life expectancy of many Methods: During 03/2006 - 09/2008, 49 paediatric categorised. Most frequent reasons were: pain relief, children/young people beyond the age of eighteen patients between 2 months and 27 years of age (mean symptom control, diminishing sedation and opioid years creating a small but expanding group with no age 11,7), 17 female and 32 male, in palliative situation analgesia out of ICU, coping with illness trajectories, or developmentally appropriate services, including were supported by our specialised paediatric palliative psychosocial aspects, assessment of patients with cystic respite. home care team at home. Diagnoses were brain fibrosis, support of “dysfunctional” families, Methods: A qualitative method was adopted, using tumours (20), bone tumours (9), leukaemia (5), psychological support, limitation therapeutic efforts unstructured interviews to elicit data from sarcoma of the soft tissue (5), neuroblastoma (3), and diagnostic/ prognostic information. adolescents/young people (n=5) and their nephroblastoma (1) and non-oncological diagnoses (6). Discussion: Building a PPCT involves an asistential, parents/carers (n=8), a focus group was facilitated to Results: Per patient, on average 8,5 home visits were educational and cultural challenge. A trend towards an obtain data from the multidisciplinary paediatric necessary. Leading symptoms were pain (27), paresis increase in number of consultations, growing demands palliative care team. Data were subjected to thematic (4), vomiting (6), impaired consciousness (5), dyspnoea from professionals working with non-oncological analysis using Burnard’s (1991) framework. Simple (3) and spasticity (4). Up to now, 10/49 patients are diseases and emergence of requests from Intensive Care proformas were devised to obtain demographic alive, 39 died. 3 patients needed palliative sedation for Unit (ICU) were observed. An educational strategy as a information. symptom control, 11 developed critical situations, in 3 response to all demands was established in order to Results: Findings are consistent with earlier studies times with enlistment of an emergency physician. allow a gradual reduction of queries by non-specialised and indicate considerable inadequacies in present Beyond that, adequate symptom control could be professionals in palliative care. In this first stage more delivery of respite services. Emerging themes from the achieved in nearly each patient, no patient was acute diseases were assessed, hoping that in future PPCT unstructured interviews were; respite services used, readmitted to hospital. could focus on its specific field, that being children negative aspects of respite, positive aspects (benefits) of Conclusions: Anticipatory planning with drug with progressive diseases, end-of-life care and respite, transitional issues and desired future services. prescription and detailed parental information, closely bereavement. Three related themes were generated from the data telephone contact to the families, routine home visits from the focus group: holistic assessment and provision by the palliative home care team in cooperation with of respite, transition from child to adult services and the family paediatrician and 24 hour on-call duty could PE 2.S342 development of an adolescent facility. avoid re-hospitalisation and unacceptable symptom Conclusions: As this cohort of young people grows exacerbation. Hence, specialised paediatric palliative Withdrawn there is a need for increased and improved respite home care service could enable affected families to services which are age and developmentally spend the final time together with their child in a appropriate, with flexible access to assist with crisis familiar setting at home. intervention. A multi-agency strategy for transitional care should be developed and implemented and the feasibility of the introduction of a hybrid youth worker PE 2.S340 and the establishment of a dedicated respite facility for adolescents/young people with life-limiting conditions. Critical situations in paediatric palliative medicine - Experience of 10 years medical home care PE 2.S338 Janßen G1, Balzer S1, Richter U1, Friedland C1, Kuhlen M1 When to introduce the pediatric palliative care 1Hämato-Onkologische Pädiatrie, Duesseldorf, team: The parents’ point of view Germany sessions Serraz D1, Duval M2, Humbert N3, Saint Laurent T4, Fortin Objectives: To determine frequency and appearance of S5 critical situations in paediatric oncological palliative 1

CHU Robert Debré, Pediatric Hematology, Paris, patients in a medical home care setting. (Saturday) France, 2CHU Sainte Justine, Centre de Cancérologie Methods: All patients cared for by our specialised Charles Bruneau, Montréal, Canada, 3CHU Sainte palliative home care service between 01/98-09/08 were Poster Justine, Pediatric Palliative Care Team, Montréal, registered and documented during their medical Canada, 4CHU Sainte Justine, Department of Pediatrics, attendance. We reviewed our data concerning critical Montréal, Canada, 5CHU Sainte Justine, Unité de situations like haemorrhage, seizure, severe dyspnoea Pédiatrie Interculturelle, Montréal, Canada attacks, paresis, blindness, copremesis and superior inflow congestion. Aim: A major barrier to palliative care for children is Results: 102 children and adolescents were cared for in the feeling caregivers have that the patient and family palliative situation at home. In 23/102 patients acute are not ready for it. The aim of our study was, therefore, threatening events befalled. 3 children suffered a life- to identify how families felt about the timing of their threatening haemorrhage, 5 an unanticipated initial meeting with the palliative care team. prolonged seizure there of 2 with a status epilepticus. 7

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 191 Poster sessions (Saturday)

choose the place of care. Patients or physicians can what extent such a document could be binding with contact us by phone 24 hours a day. regard to treatment limitation. Generally, there are two Methods: A retrospective review of the children forms of advance treatment decisions used in attended by the Palliative Care Unit from February 1st. pediatrics, (1) classic ADs made by competent to October 24th. The assessed variables were: Age, adolescents and (2) advance treatment plans (ATPs) death, place of death and group of children by the created by parents and physicians in close cooperation. EAPC. The first one raises the question how to define and Results: 36 children aged from 1 month to 19 years assess decision-making competence and whether (mean 9,6 years) received palliative care. Group I competent adolescents have the capacity to issue ADs. It (cancer)- 15 patients (42%); Group III (progressive also brings up the question of the relationship between neurologic or metabolic illnesses)- 9 patients (25%); adolescents’ ADs and the parents’ custodial rights. An Group IV (cerebral palsy and other)- 12 patients (33%). ATP is a different kind of instrument, more a 17 patients have died. Place of death: 10 children (59%) collectively agreed emergency plan than a unilateral could die at home accompanied by their family. . treatment refusal. Here, the problem lies in the balance Conclusions: between the parents’ custodial rights and the health - The most of our patients are not oncologic. care professionals’ obligation to ensure the child’s well- - The majority of our patients could die at home with being. ATPs therefore only make sense as part of an an adequate support by the team. We expect to increase ongoing communication process, which becomes PE 2.S343 the team, our quality of care, and to become a model manifest in characteristic formal features of ATP for another states in Spain or another countries. documents. Networking with volunteers for effective Conclusion: ADs are suitable instruments also in paediatric palliative care pediatric palliative care. However, there are significant PE 2.S345 differences compared to the situation of adults, and Muckaden M1, Dighe M2, Lasrado S3, Kasotia N2, Parikh N2, many problems have yet to be addressed. Nagpal U2 Extending a paediatric palliative care program 1Tata Memorial Centre, Radiation Oncology & Palliative for oncology patients to all children with life- Care, Mumbai, India, 2Tata Memorial Centre, Palliative threatening disorders PE 2.S347 Care, Mumbai, India, 3Tata Memorial Centre, Mumbai, India Renard M1, Ruysseveldt I1, Uyttebroeck A2 Bana Pele - Children First: Developing a 1University Hospitals Leuven, Paediatric Palliative continuum of palliative care for children in Introduction: Holistic Care for children with Home Care Team, Leuven, Belgium, 2University resource-limited settings in South Africa advancing disease includes physical, psychosocial and Hospitals Leuven, Paediatric Oncology, Leuven, spiritual care. In developing countries, there is always a Belgium Marston J M1, Basson P M2, Dippenaar H3, Marston R H2 shortage of staff. At the Tata Memorial Centre, the team 1Hospice Palliative Care Association of South Africa, has included trained Volunteers for psychosocial issues Paediatric palliative care is a discipline that has his Management-Paediatrics, Bloemfontein, South Africa, for children and their families. origin in haemato-oncology. A hospital-based home 2St Nicholas Bana Pele Network, Management, Materials & methods: The Palliative Care Unit at Tata care program for haemato-oncology patients started in Bloemfontein, South Africa, 3Hospice Palliative Care Memorial Centre was formed in 1996.With the our institution in 1989. The philosophy of the program Association of South Africa, Governance, Bloemfontein, Doctors, Nurses, Social Workers and Clinical is to offer specialised and tailored home care to children South Africa Psychologist, a group of Volunteers agreed to become and their family. Most children are suffering from rare, part of the team. Before the inauguration of the Unit, mostly oncological diseases, and care is given in liaison Aim: To show that quality palliative care can be they were trained in UK & Mumbai. programs. The home-nurse, member of the hospital provided for children and adolescents despite lack of Observations: At the Paediatric Palliative care Unit at team, coordinates the care of the patient at home. The resources through community networking and Tata Memorial Centre, we register 100 new children a actual care is given by caretakers at home. The hospital involvement. year, with an age range from infants upto 25 years. The team offers knowledge, structural and psycho-social Methods: In South Africa 70% of children live in psychosocial issues encountered are wide and far support to the caretakers at home and to the patient poverty. In the Motheo district of the Free State, an ranging form economic, to lack of trained medical and his family. This program was extended to include assessment showed that around 50 000 children require personnel in remote villages where patients reside. children without haemato-oncological disorders, since palliative interventions with 1 200 receiving these. Along with the staff, all issues are discussed and the year 2000. Children under 4 years are the group with the highest gradually solutions are found from within the meager Method: Evaluation of the patient population in the mortality rate. Where resources are limited, children die resources of the family. The loving, skilled care home care program between 2001 en 2007 at one of malnutrition, HIV-related infections, diarrhoeal provided by the Volunteers often help Doctors and institution. diseases and tuberculosis. Palliative care services for Nurses understand better the concerns of the child and Results: Between 2001 and 2007, an average of 37 children increase identification of vulnerable children; family. The time they are able to provide has helped so palliative patients/year were followed (range 28-48). get children onto anti-retroviral therapy, anti-biotoics, many parents talk through their problems and find Most patients suffered from haemato-oncological nutritional therapy and cancer threrapy, thus solutions. They are also a conduit for generous aid problems (16/year , range 7-28). Patients with other improving quality and length of life. Four children´s provided by the various NGO’s in the city and diseases entered the program: neurological problems hospices, located in Johannesburg, Cape Town, and elsewhere. Keeping in touch with the families after they (11/ year range 4-19), metabolic diseases (3/year, range Bloemfontein have developed networking have returned home, is also an invaluable resource, it 2-4), cardiac disease, non malignant haematological partnmerships with government health and social helps doctors keep in touch with the Local disorders, respiratory , neonatal, nephrological and services, other non-governmental organisations, Paediatricians and ensure good symptom control. Many gastroenterological disorders. businesses and faith-based organisations to identify families stay in the city to avail of our facilities. Most children died at home: an average of 17 children children needing palliative care and treatment .After Conclusions: In developing countries, Human died per year (range 8-31), a mean of 11 children died at assessing these programme s a model was developed for resources are often limited, a group of dedicated skilled home (range 6-18). Over the past years, as a trend, more the Motheo District called St Nicholas Bana Pele ( a Volunteers, goes a long way in improving the care for children died at home. South Sotho term meaning Children First) Network, to children and their families who need effective Palliative Conclusion: Palliative care is an indispensable set up a safety network of services with a strong referral care. program in the care for children with rare and life- system, so that all resources required to improve the threatening diseases. Most paediatric palliative care quality of life of children in any children´s service, will programs focus on children with haemato-oncological be collated for each child; children with HIV and other PE 2.S344 disorders. It is important and necessary to extend this health needs receive early assessment and referral for program to all children with life-threatening disorders. treament. and families receive support in caring for the Organization of a new pediatric palliative care children and accessing social services. unit in Madrid: The challenge of an integral an Results: Assessment of different successful children´s integrated model PE 2.S346 palliative care services in resource-poor settings, led to an effective new model. in a resource-poor area of Martino R1, Del Rincon C1, Cata E1, Monleon M1, Carrasco Advance directives in pediatric palliative care South Africa. A1, Fillol A1, Montalvo G1, Robles A1, Romera E G1 Conclusions: A strong network of serevices increases 1Hospital Niño Jesus, Pediatric Palliative Care Unit, Jox R J1, Nicolai T2, Führer M2, Borasio G D1 identification of life-limited children and improves Madrid, Spain 1University Hospital Munich, Interdisciplinary Center access to care and treatment. for Palliative Medicine, Munich, Germany, 2University Madrid is a state of Spain. The public health system has Hospital Munich, Dr. von Haunersches Kinderspital, developed in the last years a program to offer palliative Munich, Germany PE 2.S348 care to the adult population. In Madrid 400 children

sessions (age: 0-19 years) dye every year. 150 of them could Aims: Advance directives (ADs) are a commonly used Developing a palliative care strategy for children receive palliative care. instrument to support end-of-life decision making in and adolescents in South Africa Aim: In February 2008, we have organized an adult palliative care. Some also advocate ADs for Marston J M1, Boucher S J2, Nkosi B3 (Saturday) interdisciplinary team to offer paediatric palliative care pediatric palliative care. Our aim was to explore how to the population based on the IMPaCCT standards for ADs could be used in a pediatric population and which 1Hospice Palliative Care Association of South Africa, Poster Paediatric Palliative Care in Europe published in 2007. caveats have to be respected. Management - Paediatrics, Bloemfontein, South Africa, Our aim was to enhance the quality of life of the Methods: In a pilot questionnaire study, we surveyed 2International Children’s Palliative Care Network, children and to support the family along the process of all physicians of our local Children’s Hospital on their Information, Durban, South Africa, 3Cotlands, dying. We give direct palliative care in the hospital experiences and attitudes regarding ADs in pediatrics. Community Development, Johannesburg, South Africa setting and at home and indirect palliative care, Based on the results and a literature review, we supporting other professionals at other hospitals and in performed an ethico-legal analysis. Aim: To improve access to quality palliative care for the office setting. The challenge is to give palliative care Results: In the pilot study, 31% of the pediatricians children in South Africa. to all the children, everywhere, every day, 24 hours a reported having been confronted with ADs before. Methods: Assessment of the status of day. We are 2 physicians (paediatricians), one of them While 92% thought that this instrument is helpful, children´spalliative care in South Africa showed few acts also as coordinator, 4 nurses, 1 social worker, 1 opinions were divided regarding which children should children´s hospices, little understanding of the psychologist and a secretary. The child and the family be included into the process of creating an AD and to difference between children´s and adult palliative care,

192 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) few funding resources for children´s palliative care, and support patients and parents when transferring a child spirituality and to provide spiritual care and support. 20 a dearth of materials suitable for Africa. Working on respiratory support home or to the hospice for Children between 5 and 12 with competent verbal skills together with individuals working in the field from 6 extubation and end-of-life care. were interviewed on what their life meant to them, how African countries, materials were developed for use in Methods: A retrospective case series review of 6 the perceived themselves in relation to others; and their hospitals, hospices and communities, and a toolkit for children who were transferred from the paediatric concept of themselves. Caregivers were interviewed on the development of children´s palliative care . intensive care unit at Great Ormond Street Hospital. each child´s ability to interact with other children, individuals in hospices in South Africa were identified, Results: 4 children were transferred to a hospice and 2 participation in religious rites, and self-awareness. A to form a national committee to take these into each were transferred home for extubation. The time taken simple assessment instrument was developed and tested province of the country with the primary aim to to set up the transfer ranged from 6 hours to 3 days. Key in four sites with 50 children and their caregivers, taking integrate children´s palliative care into hospices that people involved in supporting the family with decision into account certain cultural beliefs and practices. were mainly focussed on adult palliative care. Two making whilst on intensive care and at the place of Results: Once caregivers realised that spiritual national paediatric staff were appointed and supported extubation are identified. We also identified the most assessment and care if life-limited children did not by the committee were able to establish 18 new common drugs used during the transfer and post- require in-depth theological knowledge, they children´s palliative care sites in one year, with a further extubation. participated actively in testing the instrument. Children 22 initiated in the second year. the objective of the Conclusion: Extubating a child outside of hospital were all willing to answer the questions and to speak of project is to ensure thta staff in every hospice and requires several supporting services to work together. their beliefs.The tool was easy to use. palliative care service in South Africa has the necessary Co-ordinating all the services and medications takes Conclusion: Children express their spiritual oncerns in skills to identify children with life-limiting and chrnic time and tremendous committment from individual many ways - through art, play and in narrative form. conditions, assess pain and symptoms, communicate practioners. Those caring for them can be taught to assess the child effectively with children and provide child-friendly and provide support through using a simple assessment services. An introductory course has been developed tool and reacting to the child´s spiritual needs. with a project to implement an advanced course in PE 2.S351 progress. Results: Skills and knowldege in children´s palliative Effectiveness of a coordination center for PE 2.S353 care were increased in members of the committee and pediatric palliative care: The health care hospices. Materials were developed suitable for the professionals’ experience Palliative care needs of nursing home residents South African context. Awareness about children´s in Germany palliative care was increased. A further 30 hospices have Vollenbroich R1, Duroux A1, Brandstätter M2, Borasio G D2, asked for support to include children´s palliative care in Führer M1 Strohbuecker B1, Montag T1, Ostgathe C1, Voltz R1 their services, with 22 identified for further 1Interdisciplinary Center for Palliative Medicine and 1University Hospital Cologne, Department of Palliative development. Dept. of Pediatrics, Munich University Hospital, Medicine, Cologne, Germany Conclusion: Increased knowledge leads to hospices Munich, Germany, 2Interdisciplinary Center for being willing to provide children´s palliative care Palliative Medicine, Munich University Hospital, Aims: New legal regulations in Germany make within traditionally adult services. Munich, Germany palliative care in nursing homes a right for all patients. Our study aims to explore the palliative care needs of Background: Pediatric palliative care in the home nursing home residents in Germany. PE 2.S349 setting is a challenge for all involved health care Methods: Using a qualitative exploratory design, we professionals (HCPs). The goal of the Coordination carried out semi-structured interviews (n=14) with Effectiveness of a coordination center for Center for Pediatric Palliative Care (CPPC) at the residents and their significant others, general pediatric palliative care: The parents’ experience University of Munich is to improve the networking of practitioners and palliative care specialists and the multiprofessional resources involved in each child’s performed focus-group discussions (n=2) with nurses, Vollenbroich R1, Duroux A1, Brandstätter M2, Borasio G D2, care by targeted care coordination. This study’s social workers and volunteers. The interviews were Führer M1 objective was to monitor the effectiveness of the audio-recorded, fully transcribed and analyzed by 1Interdisciplinary Center for Palliative Medicine and CPPC’s approach as perceived by the involved HCPs. grounded theory approach. Our sample was purposeful; Dept. of Pediatrics, Munich University Hospital, Methods: Preliminary interviews elicited factors residents with impaired communication capacity were Munich, Germany, 2Interdisciplinary Center for regarded as important for successful pediatric palliative excluded. Palliative Medicine, Munich University Hospital, care. A questionnaire with numeric analog scales (0-10) Results: Results show that enough time, continuity of Munich, Germany was developed and sent to HCPs (physicians, nurses, care and a trusting relationship between the resident social workers, psychologists, chaplains, and the nurse(s) are prerequisites for residents to Background: The home care of severely ill and dying physiotherapists etc.; N=105) which were involved at address their needs. Psychosocial issues are: to be in children is still at its initial stage. The Coordination least once in the palliative care of a child cared for by contact with family, friends and “the world outside”, Center for Pediatric Palliative Care (CPPC) at the the CPPC. need for closeness to loved ones, reconciliation with University of Munich strives to enable the care of dying Results: The return rate was 83% (N=87; 51% family members, need to say good-bye, need for control children at home with a good quality of life through physicians, 28% nurses, 22% other HCPs). All care over therapy and care, need for consultation coordination of all professional assistance in the domains investigated improved significantly after concerning the living will. Physical issues are: pain, palliative phase as well as a 24/7 medical on-call service. involvement of the CPPC (p<.001), particularly the wound care, breathlessness, weakness, need for rest, Methods: Parents of children cared for by the CPPC cooperation with the local physician (median 5 vs. need to go outside to get fresh air, exsiccosis, were contacted at the earliest 3 months after the child’s median 7) and the hospital doctors (6 vs. 8), the constipation, cachexia, dizziness, tube feeding. Lack of death. They were sent a self-developed questionnaire communication within the multiprofessional care team cooperation between general practitioners and asking about their satisfaction with various aspects of (6 vs. 8), the networking with external care facilities (5 palliative care specialists preclude adequate symptom the CPPC’s work and with the course of the dying vs. 8), the funding of the home care (5 vs. 7) and the relief. Spirituality serves as a helpful resource, especially phase (using numerical rating scales, 0-10). Validated support of the whole family (6 vs. 8). 35% of when dealing with crisis and dying. questionnaires (HADS, PG-13) were used to probe for respondents feel rather uncertain in pediatric palliative Conclusions: Shortage of nursing staff leads to retreat anxiety, depression and prolonged grief disorder. therapy and symptom management, 30% in of nursing home residents. Good staffing is essential to Results: 43 parent dyads agreed to participate, the ethical/legal questions. 40% of HCPs report a deficiency meet the needs of this population. An integrated questionnaire return rate was 88%. 37% of the children of psychosocial support for the caring team, and 79% approach considering psychosocial, physical and died of an oncological disease. The mean duration of would welcome advanced training possibilities in spiritual needs is necessary. Specialised palliative care care by the CPPC was 6.5 wks [0.1-48.1]. Mean pediatric palliative care. teams should back up primary care. satisfaction with the CPPC’s work was 9.1 [4-10]. The Conclusions: Involvement of the CPPC in the home importance of the 24/7 on-call service was rated highly care of dying children is experienced as a substantial (mean 9.4). The child’s death had been experienced as improvement by all HCPs involved. The main areas of PE 2.S354 very peaceful in most cases (mean 8.4). 71% of the perceived improvement are cooperation between the children died at home. According to the parents, different HCPs, assistance for the child and reduced Affective disorders among the patients of a involvement of the CPPC led to a reduction in the burden for the family. There is a high demand for hospice children’s symptom load (median 10 vs. median 8; training opportunities in pediatric palliative care. p<.001) and to significant improvements in the Shakhurova N1 children’s quality of life (md 3 vs. md 7; p<.001) as well 1Mental Health Research Institute, Tomsk, Russian as in the communication within the caring team (md 6 PE 2.S352 Federation vs. md 9; p<.001). Anxiety was detected in 25% of parents, depression in 19%. 5 parents developed a Developing a tool for spiritual assessment of life- Introduction: Basic destination of medicine is prolonged grief disorder. limited children in South Africa deliverance from suffering. This postulate becomes Conclusions: Involvement of the CPPC, according to especially relevant in the area of palliative ??re, because the parents’ opinion, led to a marked improvement in Marston J M1, Semppe R2 at the end-of-life many medical decisions are 1

all domains of care investigated. Thus, coordination of Hospice Palliative Care Association of South Africa, determined by personal values and individual needs of sessions the health care professionals involved in the last phase Bloemfontein, South Africa, 2St Nicholas Children’s a patient. of life appears to be a pivotal quality factor for the Hospice, Nursing, Bloemfontein, South Africa Objective: To estimate the prevalence of affective

home care of dying children and their families. disorders among terminally ill cancer patients in a (Saturday) Aim: To provide a culturally relevant assessment tool for hospice. children in South Africa. Palliative care for children Materials and methods: 49 patients (19 male and 30 Poster PE 2.S350 includes spiritual assessment and care, but this is often female, mean = 73,17±7,13 yrs) hospitalized due to neglected due to lack of skill in assessing children´s incurable oncopathology for palliative care in the Extubating children at home or hospice for end- spirituality and lack of understanding of spirituality in hospice were questioned according to Hospital Anxiety of-life care - What´s involved? children. and Depression Scale (HADS) and Geriatric Depression Methods: Literature search revealed most literature has Scale (GDS-15). The inclusion criterions were the ability Koh M1, Craig F1 been developed for the developed world. Assessment of to understand the text of the questionnaire and the 1Great Ormond Street Hospital, Palliative Care, London, knowledge, skills and comfort of palliative care wish to answer to one. For making a diagnosis of United Kingdom practitioners in a children´s hospice through a depressive disorders, the clinical interview has been questionnaire and follow-up interviews. Participants hold by the psychiatrist after the score Aim: To identify the key services and drugs needed to were asked to rate their ability to assess children´s psychodiagnosatic scales.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 193 Poster sessions (Saturday)

Results: Depressive disorders have been detected in Therefore GPM: supportive and palliative care. One theme of work 69,39% patients (male 68,42%, female 70,0%). - combines the principles and practice of both geriatric focuses upon care for older adults towards the end of According to ICD-10 diagnostic criterions the revealed medicine and palliative care life, reflecting recognition by the palliative care and disorders were classified as organic affective (depressive) - focuses on comprehensive geriatric assessment, relief public health disciplines that care in the last year of life disorder (F06.36),n=9;18,37%, recurrent depressive from pain and other symptoms and management of for older people is an important priority. Aims: The disorder ( F33.11), n=10; 20,41%, current depressive physical and psychological problems, integrating social, Older Adult theme aims to address aspects of older episode (F 32.0), n=4; 8,16%, dysthymia (F 34.0), n= 4; spiritual and environmental aspects adult’s experiences previously under researched. It also 8,16%, depressive reaction (F 43.0), n = 7;14,29%. - recognises the unique features of symptom and considers methodological issues, including how to Conclusions: High prevalence of depressive disorders disease presentation, the interaction between diseases, involve service users in the research process. (69,39%) was estimated in patients of the hospice. Use the need for safe drug prescribing and the importance Methods: We have held a series of ‘protocol generation of psychodiagnostic questionnaires for screening of a tailored multidisciplinary approach for older events’ bringing together collaborators (researchers, revealing the depressive disorders is purposeful and has palliative patients and their family clinicians, service users) to develop research proposals. a number of considerable advantages in this age group: - emphasises the importance of autonomy, the These have been supported by ‘State of the Science’ 1) doctor obtains quantitative rating of severity of involvement in decision making, the existence of meetings at which are presented new findings and depression and anxiety; ethical dilemmas cutting edge work in the area. 2) patient has a possibility to express verbally his/her - calls the need for good communication skills when Outcomes: An interdisciplinary programme of work mental experiences that can remain without attention discussing and giving information to older patients and has been developed that focuses upon three core areas: during an ordinary somatic examination; their families older people’s priorities, processes of care and places of 3) medical staff acquires experience of more empathic - addresses the needs of older patients and their families care. Specific focus is paid to older adults living alone, response onto emotional needs of the patient. across all settings care homes and family carers. To date CECo members - pays special attention on transitions in and between and collaborators have obtained 15 research grants settings of care worth just over £2 million. A series of four funded PE 2.S355 - offers a support system to help the family cope during seminars addressing ‘Psychological and Social Aspects the patients illness and in their own bereavement. of Dying in Old Age’ have been undertaken involving The voices of older people living in supported Conclusion: Defining Geriatric Palliative Medicine is over 130 academics, clinicians, older people and ‘extra care’ housing about end of life care the first step in an attempt to address the important voluntary sector organisations. topics of GPM, to discuss the relevant issues and to plan Conclusions: It is possible to develop a collaborative Seymour J E1, Crosbie B1, Froggatt K2 strategies to improve the care for older patients at the programme of supportive and palliative research 1University of Nottingham, School of Nursing, end of life. focused on the needs of older adults that has relevance Midwifery and Physiotherapy, Nottingham, United for clinical practice, policy makers and future research Kingdom, 2Lancaster University, International development. However, appropriate time and resources Observatory on End of Life Care, Lancaster, United PE 2.S357 are required. Kingdom Funding source: NCRI Pain assessment and management in the home: Background: ‘Extra care’ housing is a model of Perspectives of older patients with advanced supported housing that provides assistance while cancer and their family caregivers PE 2.S359 preserving some independence for frail older people, many of whom have palliative care needs. This study McPherson C J1, Hadjistavropoulos T2, Lobchuk M M3, Developing a palliative care intervention in took place in collaboration with a national provider of Hogan K-A4 advanced dementia: Methodological challenges extra care housing in England. 1University of Ottawa, Ottawa, Canada, 2University of and solutions Aim: To explore the views of older people living in Regina, Department of Psychology, Regina, Canada, supported housing about end of life care issues. 3University of Alberta, Faculty of Nursing, Winnipeg, Kukkastenvehmas R1, Thuné-Boyle I1, King M1, Jones L2, Method: Two extra care housing schemes in the North Canada, 4University of Ottawa, School of Nursing, Blanchard M1, Sampson E2 of England were recruited. Twenty-seven older people Ottawa, Canada 1UCL, Department of Mental Health Sciences, UCL attended informal ‘coffee morning’ meetings at which Medical School, London, United Kingdom, 2UCL, Marie they expressed a range of views about end of life care. The evidence indicates that significant numbers of Curie Palliative Care Research Unit, Department of These were recorded in written field notes. Six older people with advanced cancer suffer with pain. Mental Health Sciences, London, United Kingdom people (five women and one man) four of whom rated Moreover, prevalence rates indicate that older people in their health as ‘fair’ or ‘poor’ took part in individual particular are likely to have their pain inadequately Introduction: The quality of end of life care received interviews. Field notes and interview data were analysed assessed and treated. With a move towards home care, by patients with advanced dementia and their carers is using a framework approach. there is greater reliance on family caregivers to assume often poor. Families are rarely informed of likely Findings: At the informal meetings, some older people added responsibilities with regard to symptom outcomes but are expected to make difficult end of life said that the topic was not relevant since they hoped to management in palliative care; a task that can be care decisions. The aim of this study was to design and live for a ‘long time yet’. Others said they thought extremely challenging. Family involvement in pain pilot an intervention to improve care. about the end of life a lot, but did not talk about it. A management can include assessment, monitoring, Methodology: Using the MRC framework for complex number recounted bereavement or illness experiences. administering medications and non-pharmacological interventions, this phase II study intervention consisted In the individual interviews, participants stressed the approaches, negotiating with health professionals, of a palliative care needs assessment and advance care desire to live in the housing facility until the end of acting as a proxy on behalf of patients, and decision- planning (ACP) (delivered by a nurse-specialist) to their lives. A key concern was to relieve their families of making regarding treatments. Therefore, key to enhance relatives’ understanding of end stage burden. For some, the choice to live in extra care was a understanding barriers to effective pain assessment and dementia, support their decision making, reduce form of advance care planning. management, within this context, are the perceptions unplanned emergency hospital admissions and Conclusion: Extra care housing providers face of both the patient and their family caregiver. To date, improve satisfaction with care. We aimed to recruit 80 challenges in providing care to their residents until the studies have predominantly used quantitative methods relatives of patients with advanced dementia, admitted end of their lives. These findings have implications for to understand factors affecting the management of to acute hospital wards, clustered at ward level (“usual all providers of supported housing. pain. Yet qualitative approaches can provide insights care” on one ward and intervention on the other). Funding: Burdett Trust for Nursing. into the complexity of the phenomenon from different Results: Difficulties with recruitment became apparent perspectives. The aims of the study were to explore pain as 33% of patients did not have an available next of kin assessment and management from the perspectives of and families (particularly the control group) were PE 2.S356 older patients with advanced cancer receiving home reluctant to participate in research during the acute palliative care and their family caregivers. An inductive hospital admission. The protocol was amended to allow A definition of Geriatric Palliative Medicine qualitative content analysis was used to describe and potential participants to be identified during the critical interpret the data collected from 15 patients and their time of hospital stay, but for the research to be carried Van Den Noortgate N J1, Pfisterer M2, Curiale V3, Rexach L4, caregivers. Measures were taken to ensure out in the community. This allowed randomisation of Ribbe M5, Pautex S6 methodological rigor. Areas explored included all patients into either the intervention group 1University Hospital Gent, Geriatric Medicine, Gent, symptom communication, expectations, assessment, (palliative care needs assessment and ACP) or the Belgium, 2Evangelisches Krankenhaus Elisabethenstift, roles in decisions regarding pain, coping, challenges control group (information pack related to care needs). Klinik für Geriatrie, Darmstadt, Germany, 3Galliera dealing with pain at home, and their views on Overall, relatives found the intervention useful; ACP Hospital, Acute Care for Elders Unit, Department of professional support. The findings provide insight into has been completed so far by 26%. Reasons for non Gerontology, Genoa, Italy, 4University Hospital Ramón the experiences of pain in older adults and completion included complicated family dynamics and y Cajal, Palliative Care, Madrid, Spain, 5VU University characteristics of the context of care that facilitate or reluctance to address end of life issues or make Medical Center, Nursing Medicine, EMGO Institute, impede the recognition and effective treatment of pain. decisions. The intervention appears timely as 40% of Amsterdam, Netherlands, 6University Hospital Geneva, patients with advanced dementia died within 6 moths Division of Palliative Medicine, Department of from the hospital admission.

sessions Rehabilitation and Geriatrics, Geneva, Switzerland PE 2.S358 Conclusions: Recruitment on acute medical wards is methodologically challenging, therefore community Aim: As dying trajectories for frail older are quite The role of the cancer experiences collaborative recruitment may be better. The intervention has been

(Saturday) different from those of younger patients, palliative care in the development of research capacity in overall well received. for this population will need specific skills. The purpose supportive and palliative care for older adults: A Poster of this project is to define the specific aspects of progress report Geriatric Palliative Medicine (GPM). Methods: The Geriatric Palliative Care Interest Group Seymour J1, Froggatt K2, CEco Older People Theme of the European Union Geriatric Medicine Society met 1University of Nottingham, School of Nursing, to discuss a definition of GPM. They rely on the WHO Nottingham, United Kingdom, 2Lancaster University, definition of palliative care and the existing definitions International Observatory on End of Life Care, of Geriatric Medicine. Lancaster, United Kingdom Results: GPM is the medical care and management of older patients with health related problems and Background: Since 2006, the Cancer Experiences progressive, advanced disease, for which the prognosis Collaborative (CECo), a partnership between five UK is limited and the focus of care is the quality of life. universities, has developed research capacity in

194 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

PE 2.S360 more frequently were, for example, antipyretics (54% 62-93) to Home Hospice For Adults Of Association Of versus 34%; p=0.001), oxygen (29% versus 13%; Volunteers Of Palliative Care In Wielkopolska were Bridging the gaps between palliative care, p<0.001), and opiates (22% versus 10%; p=0.003). assessed blood pressure, waist, pressure ulcers gerontology, and mental health: A collaborative Differences were not explained by different case mix. (Thorrance scale), feeding status (MNA) and after initiative to improve the care of delirious Half of physicians (49%) stated they generally treat to overnight fasting metabolic factors: erytrocytes patients at the end-of-life relieve symptoms more frequently than before. sedimentation rate (ESR), complete blood count (CBC), Conclusion: In the Netherlands, nursing home concetration of total protein, glucose, plasma lipids: Brajtman S1, Wright D1, Allard P2, Bruto V3, Burne D4, physicians provide more symptom relief to patients total cholesterol (T-C), HDL-cholesterol (HDL-C), LDL- Gage L5, Gagnon P6, Hogan D7, Sadowski C8, Wilson K9, with dementia and pneumonia compared to a decade cholesterol (LDL-C), triacyloglicerydes (TAG), level of Helsdingen S9 ago while maintaining similar levels of curative glycated hemoglobin (HbA1c) and activity of superoxide 1University of Ottawa, School of Nursing, Ottawa, treatments. Further cross-national studies are needed to dysmutase (SOD-1) were estimated. According Canada, 2University of Ottawa, Division of Palliative detect if improvement in palliative care in the Thorrance scale we divided patients into two groups: Care, Ottawa, Canada, 3University of Toronto, understudied dementia population is a general trend. with the better Thorrance 1,2,3 stage (B) (n=16) and Department of Human Development and Applied worseThorrance 4,5 stage (W) (n=13). Psychology, Toronto, Canada, 4Sheridan College and Results: 1. All patients were malnourished (MNA 5 or Institute of Technology and Advanced Learning, PE 2.S362 lower) and did not differ with the ESR, CBC, total Gerontology, Brampton, Canada, 5Whitby Mental protein, glucose, lipids profile and HbA1c. Health Centre, Toronto, Canada, 6Université Laval, Referral of terminally ill patients to medium- 2. The SOD-1 activity was dramatically low (p<0,03) in Québec, Canada, 7University of Calgary, Geriatric long term hospitals and residential care centers W (1011±324 U/gHb) vs. B (1322±391 U/gHb) 3. Medicine, Calgary, Canada, 8University of Alberta, in Extremadura Negative correlation was found for SOD-1&Thorrance Faculty of Pharmacy and Pharmaceutical Sciences, scale (R=-0,39 p=0,036). Edmonton, Canada, 9Canadian Coalition for Seniors’ Majado Marquez B1, Librada Flores S2, Rocafort Gil J1, Flores Conclusions: Because Thorrance scale correlate with Mental Health, Toronto, Canada Belmonte J3, Pop B4 the intracellular antioxidative marker SOD-1 we suggest 1Extremaduran Health Service, Regional Palliative Care that for patients with pressure ulcers Thorrance Aim: To present the impact of a collaborative Programme of Extremadura, Merida, Spain, assessment is sensitive and specific risk stratification partnership across healthcare spheres to improve the 2Extremaduran Health Service, Regional Observatory tool and may be used as the best tool. care of patients with delirium at the end-of-life. on Palliative Care in Extremadura, Merida, Spain, Methods: In May of 2006, evidence-based 3Extremaduran Health Service, Regional Palliative Care interdisciplinary guidelines on delirium in seniors were Programme of Extremadura, Zafra, Spain, PE 2.S364 released by the Canadian Coalition for Seniors Mental 4Extremaduran Health Service, Regional Palliative Care Health (CCSMH). Concurrently, two Canadian research Programme of Extremadura, Navalmoral de la Mata, A specialist palliative care service for patients with teams in end-of-life care were identifying delirium as a Spain advanced dementia: an analysis of the first 50 pressing issue in palliative care service delivery. A patients partnership was thus formed between the CCSMH and Background: From 2006, Extremadura implemented the research teams to adapt and implement the medium-long term care hospitals and residential care Pace V1, Scott S1 delirium guidelines specifically to an end-of-life care programmes and resources covering both health and 1St Christopher’s Hospice, London, United Kingdom context. A workshop held in January 2008 brought social care of terminally ill patients. together multidisciplinary clinical experts and Aim: To know the number of terminally ill patients Specialist palliative care has been wary of end-stage researchers in palliative care, geriatrics and mental referred to social-health centers in Extremadura from dementia because of its long slow progression, a fear of health. The CCSMH guidelines were reviewed, and Palliative Care Teams (PCTs), its social-health profile inundation, difficulty in identifying the terminal stage, many of the guidelines were revised based on existing and the elapsed time from the patient’s inclusion in the and a lack of a suitable model of care. This is an interim evidence on delirium in palliative care. program until the referral to centers. report of the first 100 referrals to such a service, provided Results: This project illuminates the possibility for Method: Retrospective observational descriptive study. by an experienced specialist palliative home care nurse partnership across different domains of health service The clinical files of all terminally ill patients registered (CNS) with consultant support. UK Gold Standards delivery, and simultaneously underscores the unique by the 8 PCTs in Extremadura during 2007 were Framework (GSF) referral criteria were adopted, plus a nature of the end-of-life care context. Aspects of this revised. modified surprise question: would you be surprised if ´uniqueness´ include the fundamental importance of Variables: Social-demographic characteristics, number this patient died within 6-12 months? 1 referral was clarifying goals of care at the end-of-life and of viewing of patients referred by PCTs to medium-long term received every 8.1 days from many medical and social the patient´s experience as constitutive of a hospitals and residential care centers in Extremadura, care professionals. Most were for symptom control or psychosocial history and relational connectedness to elapsed time of referral to them (days). carer support. 68% were in residential care, 31% at home, family. Also, the evidence base for recommendations Results: 1,711 clinical stories from the PCTs (n=8) have 1% in hospital. 9 were rejected, 7 died before being seen, retained from the original guidelines was sometimes been studied. 88% were accepted (including 4 rereferrals). 15 were lowered, indicating the relative dearth of empirical The number of patients referred to medium-long term stabilised and discharged, 55 died under the service research data specific to palliative care settings. centers of Extremadura in 2007 by palliative care teams within 18 months of inception; the rest were still being Conclusion: Quality care for people at the end-of-life has been 54 patients (3.15%). seen at review. Common symptoms were weight loss, depends on collaborative partnerships across health The social-demographic profile is a male (65.1%) with fatigue, weakness, anorexia, drowsiness, aspiration, sectors. Based on the revisied guidelines, next steps in an average age of 75 years with main diagnostic being constipation, and sleep problems, the first 5 being most this project include the the development, cancer (81.5%) with primary level studies (59.2%), severe. A few had complex symptoms. Pain was present implementation and evaluation of care pathways for regular economic situation (46.1%), social network in 71/88 , usually from arthritis, pressure sores or delirium at the end-of-life for patients across varied breakdown (70.8%). Regarding carers, the vast majority contractures, incident or procedural pain. Only 5 end-of-life care contexts (e.g. hospital, hospice, and were sons and daughters (37.9%). The elapsed time required the equivalent of 60mg oral morphine / 24 home). average in patients’ referral process was 41 days. hours. Only 3 briefly needed the full palliative home care Conclusions: The number of patients referred to service, at the end of their life. 10 patients were admitted medium-long term centers in Extremadura is poor to hospital, where 8 died; 1 admission was inappropriate. PE 2.S361 (3.15%), with a long waiting time for referral (average: Most patients can be cared for by generalists.. However 41 days). In referred patients, we must stress the social specialist palliative care support had a key role in Trend in treatment of pneumonia among Dutch needs profile such as the fact that the main carer are identifying dying, enabled carers to pick up symptoms in nursing home patients with dementia, 1996-1998 the sons and daughters and the vast majority of uncommunicative patients, referred to appropriate versus 2006-2007: More treatments to relieve patients showed a breakdown in their social network. outside agencies, identified those needing specialist symptoms input, communicated with families, educated and mentored professionals, monitored end of life care and van der Steen J T1, Meuleman-Peperkamp I2, Ribbe M W3 PE 2.S363 screened bereavement issues. GSF criteria seem useful; 1VU University Medical Center, EMGO Institute, formal validation is being carried out. This model of care Nursing Home Medicine / Public and Occupational Palliative care for elderly people with pressure appears cost-efficient . Health, Amsterdam, Netherlands, 2Verpleeghuis ulcers: Lessons we have learned and challenges (Nursing Home) Lucia, Breda, Netherlands, 3VU for the future University Medical Center, EMGO Institute, Nursing PE 2.S365 Home Medicine, Amsterdam, Netherlands Dziegielewska S1, Wysocka E1, Torlinski L1, Jakrzewska- Sawinska A2 Hypernatriemia at admission in elderly patients Aim: Interest in dementia palliative care has expanded 1Poznan University of Medical Sciences, Department of implies a dismal prognosis, even with adequate recently due to demographic developments and Chemistry and Clinical Biochemistry, Poznan, Poland, rehydration acknowledged care deficiencies. To test if palliative care 2Home Hospice for Adults of Association of Volunteers for dementia patients is improving, we compared of Palliative Care in Wielkopolska, Poznan, Poland Gabrovska M1, Geurs F J C1, Dedobbeleer I2, Van Gysel M2 1

treatments in cohorts of patients with dementia and Regionaal Ziekenhuis Sint Maria, Palliative Care Dept, sessions pneumonia a decade apart. The life expectancy of people increased. Older citizens Halle, Belgium, 2Regionaal Ziekenhuis Sint Maria, Methods: In two nationwide studies in the still require more care and needs in comparison with Mobile Supportive Care Unit, Halle, Belgium

Netherlands, 61 (1996-1998) and 54 nursing homes younger populations. Among elderly population (Saturday) (2006-2007) participated, of which 53 were the same. conditions such as cardiovascular and neurological Aim: In elderly care several guidelines are developed for In 1996-1998, 706 patients with pneumonia and disorders and its complications are now leading causes treatment of hypernatremia . Its prognostic significance Poster dementia were prospectively enrolled by 201 physicians of bed bound and death. Pressure ulcers are the first is however unknown. and in 2006-2007, 72 patients by 69 physicians. Data complications in those who are bed bound. As pressure Patients and methods: We conducted a retrospective collected included treatments, physician and patient ulcers occur the complications such as infection, analysis among patients over 70 years of age, with characteristics, outcome, and in the 2006-2007 study, dehydration and malnutrition appear. This sodium levels equal to or greater than 150 mmol/l (at physicians’ self-reported change in treatments. complications increased oxidative stress and other admission or during the hospitalization). All admissions Results: The frequency of providing antibiotics was metabolic conditions. from jan 2007 to oct 2008 were screened for the similar: 79% in the recent cohort versus 77% 10 years Aim: Was to investigate the metabolic condition and presence of hypernatremia. In cases with serum Na before (p=0.63) as was oral antibiotic treatment (91% of oxidative stress markers among elderly people with >150meq/l; individual charts were drawn and date of those receiving antibiotics versus 88%; p =0.44). pressure ulcers. death or hospital discharge were noted. 82 patients had Treatments to relieve symptoms that were provided Methods: Newly admitted elderly patients (n=29, age a serum sodium of >150meq at admission, all were

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 195 Poster sessions (Saturday)

treated with hypotonic fluid (always 4 liters of Glucose Design and methods: In the first stage of the project medical problems. When planning a therapy for a 5% over 24hours until normalisation of serum sodium). qualitative data were obtained by means of interviews patient who was treated for already existing diseases Results: Hypernatremia was found in 82 patients. Mean with nurses about their experience with patients before, palliative care specialists face the problem of age was 84.1 ± 6.7 years. The mean peak serum sodium refusing to eat or drink and through participation and choosing the safest therapy necessary to control level was 157.3 ± 7.4 mmol (ranged from 150 to 188). observation. In the second stage a literature review was developing cancer. Proper therapy for several diseases Most of the patients had severe dementia. In spite of performed. In the final stage interventions will be should be based on an in-depth analysis of all drugs fluid replacement and follow-up treatment, outcome implemented and evaluated. that are necessary and it should also consider potential was poor: 40 patients or 50% died within 2 months. Findings: The results from the qualitative interviews interactions and costs. indicate that nurses are deeply involved with the care of The study aim was to define the age structure and Sodium value number median survival (range) the patients. Information about patients’ wishes identify chronic diseases coexisting in home palliative 150 - 155 25 14 (1 -60days) concerning the end-of-life is important for nurses in cancer patients. order to be able to cope with patients’ refusal to eat or Methods: Non-clinical and non-invasive research 156 - 160 9 7 (1-32 days) to drink. based on 208 advanced cancer patient’s medical 161 - 170 4 50 (37,64) Even if nurses are highly motivated to contribute to the documentation from the Non-Public Home Palliative quality of life of the patients they hesitate to report Care Institution in Lodz. The analysis did not include 171 - 175 2 7 days their observations and more clearly to discuss patients documentation, which were shorter than 7 days of care. 176 -180 1 4 days wishes during the decision making process about All the patients required symptomatic treatment. >180 1 1 day patients treatment. By this they didn’t succeed in Research selected coexisting diseases were the ones for achieving the proper treatment for the patient, which which patients took medication. may lead to increased patients´ suffering at the end of Results: The age of patients was between 25 and 90, Conclusion: life. elderly patients were in the majority. 1. Elderly patients admitted with hypernatriemia, have Insights from the literature review lead to adopt the The most frequent cancers diagnosed were: lung, breast a dismal prognosis: 50% die within 60 days of advocacy model of Curtin and two instruments in order and digestive system cancers. Coexisting diseases were admission; even with normalisation of sodium. to support nurses to report concrete observations of diagnosed in 79,2% patients the most often were 2. prognosis is inversely related to the degree of patients’ behaviour and feeding refusal. diagnosed diseases: circulatory system diseases, hypernatremia; above 170mmol prognosis is < 1 week. Conclusion: The first results of this project indicate ischemic heart disease, hypertension and peripheral 3. Our data illustrate that intracellular dehydration is that nurses are enthusiast about learning to act as an vessel disease, and very common disease - about 25% of part of the natural dying process of the elderly with advocate of the patient and to report concretely their patients was diabetes type II. Patients reported 1-4 dementia. Even vigorous artificial rehydration does not observations. By enhancing nurses´ awareness and coexisting diseases, maximum 7. alter this natural process nor its prognosis. feeling of security they will be encouraged to actively Conclusions: participate at the decision making process and to - patients provided with home palliative care were contribute more completely to the quality of the end- people of advanced age PE 2.S366 of-life of patients with advanced dementia. - most patients suffered from coexisting diseases - most frequent diseases coexisting with cancer are Evaluation of the Gold Standards Framework for ischemic heart disease, hypertension, peripheral vessel Care Homes: The development of a matrix to PE 2.S368 disease and diabetes analyse qualitative data - estimation of costs of treatment for palliative care Symptom prevalence in the last year of life of patients should also include treatment of coexisting Watson J E1, Hockley J2, Murray S3, Palliative Care Research Brazilian underprivileged elders: A palliative diseases. Group care needs assessment 1St Columbas Hospice, Nursing, Edinburgh, United Kingdom, 2St Christopher’s Hospice, Nursing, London, Solano J P1 PE 2.S370 United Kingdom, 3University of Edinburgh, General 1Universidade de Sao Paulo School of Medicine, Sao Practice, Edinburgh, United Kingdom Paulo, Brazil The birth of a death plan: The origins of an advance care planning tool for improving Aim: End of life tools such as the Gold Standards Brazilian elderly population is growing faster than any people’s experience of end of life Framework for Care Homes (GSFCH) are recommended other age group and is expected to be around 32 as a means of improving palliative care in care homes. million in 2020 (the 6th in the world). As a Fineberg I C1, Kidd H H E1 As part of a larger intervention and evaluation study of consequence, more and more people are suffering with 1Lancaster University, Division of Health Research / GSFCH in 7 care homes, qualitative interviews were chronic conditions and enduring complexes of International Observatory on End of Life Care, conducted with relatives and care homes managers. symptoms near the end of life. This study aimed at Lancaster, United Kingdom The aim was to explore any changes in the quality of interviewing family caregivers of recently deceased end of life care delivered to residents and their families elders to investigate the presence, severity and duration Aim: The national End of Life Care Programme (2004- as a result of implementing the GSFCH. of 14 distressing symptoms, as well as whether they 2007) in the UK supported 3 major initiatives for Methods: A total of 36 semi-structured interviews took were managed during the last year of life. improving end of life care, one of which was the place with relatives, 22 before implementation of Elders were enrolled to a population-based cohort study ‘Preferred Priorities for Care’ (PPC; formerly named GSFCH (20 declined) and 14 after implementation (14 in deprived areas of western Sao Paulo. Any death from ‘Preferred Place of Care’). PPC is a patient-held advance declined) Semi structured interviews were conducted the cohort was eligible for the present study. Three care planning document intended to help patients with 6 of the 7 care home managers after months after death (minimum), the interviewer facing serious illness and end of life. The aim of this implementation. A realistic evaluation approach was identified the best informant for the last year of the study, as part of an evaluation research programme of adopted. All interviews were fully transcribed and deceased and invited him/her to participate. Data were PPC, was to explore and document the origins of this analysed thematically using NVIVO qualitative collected at the place of the elder or caregiver, using a initiative. software. The relatives’ interviews were also scrutinised questionnaire about the symptoms: pain, fatigue, Methods: We conducted and audio-recorded semi- for ‘instances of care’ in relation to the 7 C’s of the dyspnea, depression, anxiety, insomnia, easy-crying, structured interviews with the four key people involved GSFCH: co-ordination, communication, control of anorexia, nausea, constipation, dyahrrea, pressure sores in the origination of the PPC initiative. The interviews symptoms, continuity, continued learning, carer and urinary/fecal incontinence. Deadline for were transcribed and analysed to develop a coherent support (family and staff), care of the dying. The 7C’s interviewing was 16 months pos-death. account of how the initiative originated and developed were designated as having positive, negative or Eighty-one caregivers were interviewed. Mean age was in the UK. The account was reviewed by all participants equivocal outcomes. A matrix corresponding with the 78 among the elders (41 female). The most prevalent for accuracy and completeness. 7C’s of the GSFCH was used to identify any changes in diagnoses at dying were cancer, pneumonia and stroke. Results: A cohesive account about the development of these salient areas post intervention. The most prevalent symptoms at the last year were pain the PPC initiative provides insight into the original Results: Post intervention the number of positive (78%), fatigue (68%), dyspnea (60%), depression and motivations and concepts underlying its history. The outcomes increased and the number of negative anorexia (58% each). Pain, dyspnea and fatigue were historical trajectory highlights key comparisons outcomes reduced suggesting that overall the project the most severe. Pain, fatigue and depression lasted between service approaches to birth and death. had a positive impact in terms of the 7C’s. When the more than 6 months. The most prevalent in the last Furthermore, it provides insight into the process by data is analysed across all the care homes there are week were fatigue, urinary incontinence, anorexia, which PPC arrived at its place in national policy. improvements in the following areas: care of the dying, dyspnea and pain. Management of pressure sores was Conclusion: The originators’ account provides a basis control of symptoms, continuity of care, carer support regarded as inefective in 46% and of pain in 45% of the for understanding the significance of how PPC has (families) & continued learning. cases. No treatment was received for depression (79%), developed to its present day format and its utilisation Conclusion: There was an improvement in the quality urinary incontinence (77%) and anxiety (67%). within end of life care policies in the UK. This of end of life care delivered from the perspective of High prevalences of symptoms were found. It´s information about the origins of the PPC initiative bereaved relatives. The analysis matrix developed was a mandatory to spread the concepts/actions of long-term offers policy makers and clinicians a basis for novel approach and could be further adapted for the and Palliative Care to provide Brazilian elders with understanding the initiative, relating it to patient care

sessions evaluation of end of life care tools. dignity and quality at the end of life. and envisioning its potential for improving people’s experience of palliative and end of life care.

(Saturday) PE 2.S367 PE 2.S369

Poster Feeding difficulty in elderly with dementia. Diseases coexisting with cancer in patients of Supporting nursing home nurses in the decision advanced age provided with home palliative care making process Kazmierczak-Lukaszewicz S F1, Gottwald L M1, Cialkowska- Schooten K1 Rysz A D1 1HU, Utrecht, Netherlands 1Medical University of Lodz, Palliative Care Unit Oncology Department, Lodz, Poland The aim of this project is directed at supporting nurses to actively participate at the decision making process Aim: Most palliative patients are people of advanced about care and treatment of elderly patients with age and take various medications for many years advanced dementia in a nursing home ward. because of chronic internal, neurological and other

196 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

PE 2.S371 the provision of comprehensive services that enable consortium of organisations to operationalise the both pain management and the tackling of important vision for the Institute is planned for 2009. Contribution of low- and middle-income social concerns. countries (LMIC) to palliative care research PE 2.S375 Pastrana T1, Vallath N2, Namukwaya E3, Mastrojohn J4, PE 2.S373 Kumar S2, Radbruch L1, Clark D5 World Hospice and Palliative Care Day - 1University Hospital RWTH Aachen, Department of Evaluating the views of decision makers and Discovering your voice Palliative Medicine, Aachen, Germany, 2Amrita Institute lobby groups towards measurements for better of Medical Sicences, Pain and Palliative Medicine, palliative care in Germany Morris C M1 Cochin, India, 3Hospice Africa Uganda, Kampala, 1Help the Hospices, International, London, United Uganda, 4NHPCO, Alexandria, United States, 5Lancaster Lückmann S L1, Behmann M1, Schneider N1 Kingdom University, School of Health and Medicine, Lancaster, 1Medical School Hannover, Epidemiology, Social United Kingdom Medicine and Health System Research, Hannover, The aim of this session is to review the achievements Germany and challenges of World Hospice and Palliative Care Aims: Important aspects of the palliative care needs of Day against its stated objectives as well as considering patients from low- and middle-income countries Aims: The German health care system is shaped by how the potential of the Day can be maximised in the (LMIC) are largely unexplored. About 44m of the 56m numerous lobby groups, organizations and institutions. future - internationally, nationally and locally. annual deaths worldwide occur in developing countries It is important to consider their views for the decision World Hospice and Palliative Care Day is a unified day and more than 33m of those concerned would benefit and policy making process in order to further develop of action to support and celebrate hospice and from palliative care. In this context, the understanding palliative care. Therefore, we have carried out palliative care around the world. The Day is supported of specific social and cultural needs is fundamental to Germany’s first representative evaluation that assesses a by hospice and palliative care organisations from all the development of appropriate health policy and wide range of stakeholders acting at the health system’s over the world. The stated objectives of the Day are: clinical practice concerning palliative and end of life meso and macro level with regard to their respective • To share our vision to increase the availability of care. This study aims to answer the question: what are views on palliative care. hospice and palliative care throughout the world by the contributions of LMIC to the published palliative Methods: 442 organizations and institutions (national creating opportunities to speak out about the issues. care literature? or federal state level) were included and grouped: • To raise awareness and understanding of the needs - Methods: A bibliometric analysis was conducted in patient and nursing organizations, medical medical, social, practical, spiritual - of people living Medline and EMBASE (to June 2008). Articles were associations, specialised palliative care organizations, with a life limiting illness and their families. included when either the first author (institutional political institutions and cost units. Using a pre-tested • To raise funds to support and develop hospice and affiliation or contact address) or the data collection standardised questionnaire, the participants were palliative care services around the world. were derived from LMIC, as defined by criteria of the confronted with 18 selected improvement Data has been gathered from evaluations of World World Bank. Excluded were editorials, letters and measurements based on technical literature. They were Hospice and Palliative Care Day from 2005-2008 in articles done in migrant and non- palliative care asked to assess the measures with regard to their general addition to semi structured interviews with key populations. relevance and their transferability to the German individuals from organisations and individuals around Results: The literature research resulted in 845 health care system (2-point-likert-scale: 1=rather good, the world that have participated in World Hospice and references. In total 245 articles coming from LMIC were 2=rather bad). Palliative Care Day. identified, being published by 34 LIMC (27.3% of Results: The response rate was 67%. In most cases World Hospice and Palliative Care Day is a key LMIC). The first publications appeared in 1982. The (13/18) the general relevance of the measures was opportunity to provide a global voice on the often study shows a rather modest contribution of evaluated as rather good (mean<1.5) whereas their neglected issue of hospice and palliative care. It publications from LMIC. However, the volume of feasibility in Germany was evaluated as rather bad provides an opportunity for individuals and publications within LMIC is distributed unequally: (mean>1.5). For the paid absence from work for people organisations worldwide, that may sometimes be Upper-Middle-Income Countries (UMIC) published who care for their relatives, for example, the general isolated in their own settings, to join with others to almost half of the articles (46.9%) while only 11% of relevance was assessed 1.3 while the feasibility was raise awareness and funds and to share our vision of the publication came from countries with low-income assessed 1.9 (p<0.001). Only 4 measures were evaluated making hospice and palliative care available to all. countries (LIC). In contrast, 104 LMIC (72.7% of LMIC) as rather good with regard to both general relevance This session will consider how individuals and do not have any registered publications. Surprisingly, and feasibility. An example is the obligatory education organisations have used World Hospice and Palliative 25% of the articles with data from LMIC have been in palliative care for professional caregivers. Care day to achieve their objectives for the published in High Income Countries (HIC). Reasons for Conclusion: There are significant barriers to overcome development of hospice and palliative care and how the underrepresentation, as well a possible correction in order to improve palliative care in Germany. Possibly, this can be maximised into the future. of this imbalance are discussed. the feasibility of essentially auspicious measures is seen Conclusions: Palliative care research should be a as difficult because of the fragmentation of priority in LMIC, where many patients could benefit responsibilities and partly conflictive interests of lobby PE 2.S376 tremendously from it, and publication of findings in groups. these countries should be encouraged. Funding: The study is funded by the German Research MDS (minimum data set): A national project of Foundation (DFG). palliative CH (Swiss Association for Palliative Care) PE 2.S372 PE 2.S374 Hoenger C1, Bigler S2 Linking legal advocates and palliative care 1Service Santé Publique, Lausanne, Switzerland, 2Rive- providers in South Africa Developing an all-Ireland Institute for Hospice Neuve, Villeneuve, Switzerland and Palliative Care: Progress to date Sithole Z M1 Objectives: Palliative ch aimed to develop a MDS in 1Hospice Palliative Care Association of South Africa, Clark D1, All-Ireland Institute Steering Group order to identify the profile of palliative care patients. Advocacy, Cape Town, South Africa 1Lancaster University, School of Health and Medicine, Twenty years after the development of palliative care in Lancaster, United Kingdom Switzerland, there is still no national data available, due In South Africa in most cases, the task of handling all to the fact that the existing statistics do not codify “non-medical” aspects of patients’ lives falls on a social Background: There are growing calls for a more palliative care. worker who is neither legally trained nor empowered to integrated approach to the development of policy, MDS meets the query’s of our public health provide legal advice or referrals. Partnerships between practice, education and research in palliative care and administrators, provides information to funders (state legal advocates and hospice and palliative care in particular at the level of national jurisdictions. One and health insurers) and contributes to benchmarking providers are thus an effective way to enhance the response to this is the creation of mandated Institutes between the various structures. effectiveness of both sets of professionals, and to co-ordinate and promote activity. Project: Since Sept. 2006, MDS was developed by a ultimately to improve the quality of life of their clients Aim: The creation of an all-Ireland Institute for specific working group composed of nurses, doctors and patients. Hospice and Palliative Care with the following vision: and a manager, representing the various linguistic In South Africa, a reference committee of palliative care to improve the experience and understanding of regions of Switzerland. and legal service providers is carrying forward an palliative and end-of-life care on the island of Ireland, In a first step MDS has been designed for specialized initiative to integrate legal and human rights advocacy by enhancing the capacity to develop knowledge, palliative care services like hospices, pc hospital units, and services into hospices and palliative care programs. promote learning, influence policy and shape practice. as well as for mobile teams (intra-and extra-hospital). In a country where 5 500 000 people are infected with Methods: Two externally facilitated open workshops MDS collects the following data: HIV -almost 14 - 6 000 000% of the population, this were held in Spring 2007 to explore initial options and comprehensive package of services is crucial for concepts. A multi-disciplinary, inter-sectoral and cross- Profile of patients Age, sex, diagnosis, place addressing both acute physical needs and the social jurisdictional steering group was established in Autumn of residence dimensions of the epidemic. 2007 to create a Business Case. In Spring 2008 a fund- Symptoms Assessment ESAS, MMS sessions The reference committee is composed of three working raising strategy got underway. Tools groups focusing on the need for materials straddling Results: The proposal is to create a dynamic initiative, Continuity of Delay before pc accessibility,

both the palliative care and legal disciplines, the of limited lifespan, which will promote a step change in (Saturday) integration of legal services in hospices, and advocacy the provision of end of life care on the island of Ireland. care and patient delay before leaving hospital, for improving access to palliative care in the public It will undertake work in three main areas: transferrring reasons for transferring from Poster sector as a basic human right. 1) education and training one health structure to People living with HIV and AIDS often face complicated 2) research and the creation of new knowledge another one legal questions related to the disposition of property, 3) serving as a resource to service providers and policy Death Date and place of death, planning for children, accessing social benefits, and makers. patient’s wishes combating discrimination in employment, housing, Philanthropic and state funders have shown and education. Children, elderly caregivers, and child considerable interest in supporting the proposed all- and youth-headed households are particularly Ireland Institute and by Autumn 2008 ‘pledges’ of Euros Results: From 01.07.08 to 30.09.08, 22 palliative care vulnerable to human and legal rights abuse. This c7 million had been obtained against a proposed five teams have completed the MDS for all their patients. initiative aims to create the partnerships necessary year budget of Euros c12million. These teams represent all types of palliative care as well between the palliative care and legal communities for Conclusions: A public tendering process to select a as the three linguistic regions of Switzerland. The

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 197 Poster sessions (Saturday)

results of the test phase will be available by early accredited educational programms - Pain relief in the end-of-life patients was recognized as December 2008. 5) human resources: in 2010 is a need for 181 educated completely necessary issue; Conclusion: The Swiss health system is organized at specialists in PC (doctors, nurses, social workers etc). - Government was engaged to provide patients by regional level (26 cantons) and covers three linguistic Time schedule is worked out for each year necessary amount and necessary forms of opioids, regions. Therefore it was hard to develop data taking in 6) state results (access to PC, number of pts) each year + according to the international standards; account the regional and linguistic diversity. 5% for adults - The Ministry of Health was obligated to create and As MDS was an palliative ch initiative, participation in 7) responsible institutions: MH, Ministry of Welfare, sign “The Instruction of PC for chronic incurable the survey was voluntary. Nevertheless, 22 teams out of local governments, PC, societies patients”. 38 participated, which represents a rate of 63%. 8) stated finances, resources (existing and necessary). As a result of these amendments, MoLHSA and MIA in Results: Analysis revealed that PC as a system does not cooperation with the OCPCNP and WHO and OSI exist in Latvia. SP outlines main directions until 2015: International experts prepared normative orders, which PE 2.S377 PC as a priority, organize human resources, PC were signed in July 2008. structures, education. These orders provide the modern instruction for PC as The challenges of palliative care faced in Conclusion: SP for PC in Latvia is designed according well as the prove administration and prescription of Lithuania to local situation, EU and WHO standards. opioids harmonized with the international standards.

Poniskaitiene M I1, Kabasinskiene R1, Demskyte J2, Bataitiene E1, Bucinskiene V1 PE 2.S379 PE 2.S381 1Kaunas Nursing Hospital, Palliative Care Department, Kaunas, Lithuania, 2Kaunas University of Medicine, ”Palliativguiden” - The Swedish palliative care Role of the social movements in the development Nursing and Care Department, Kaunas, Lithuania directory 2008 of palliative medicine in Russia

Lithuania is a country which has lost its tradition to Sauter S1, Fürst C J1 Novikov G A1, Rudoy S V1, Samoylenko V V1 look to death as a natural process, tradition to die at 1National Council for Palliative Care, Stockholm, 1Sechenov Moscow Medical Academy, Oncology, home, tradition of volunteering. So it was very difficult Sweden Palliative Care Course, Moscow, Russian Federation to establish palliative care services in our country when we gained our independence in 1990. The first steps of Aim: To create an easily accessible web based and Development of palliative medicine in Russia was PC in Lithuania were based by enthusiasm of single printed guide to specialised palliative care in Sweden. started about 20 years ago as pain therapy offices. Now persons: Background: The provision of specialised palliative there are more than 200 palliative care units, including - Kaunas Nursing Hospital was established by initiative care in Sweden, 9 million inhabitants and a population territorial centers, palliative care departments, hospices, charitable organization Caritas in 1993; one of its tasks density from 0.24 - 4 200 inhab/km2, has developed in pain therapy offices and mobile patronage groups. was to offer PC services; spite of a national strategy. There is an obvious Despite some progresses development of the palliative - subdivision of Pain and Palliative therapy was difference in palliative care provision in different parts care meets some barriers. One of them is lack of organized in Vilnius Oncology Institute in 1995; of the country. knowledge about palliative care both among medicine - Lithuanian Palliative Medicine Association was Methods: All known palliative care services in Sweden professionals, and among population as a whole. We founded in 1995; were contacted through available networks. Based on a believe that activity of the social movements could help - Charitable Organization Caritas fulfilled project description of specialised palliative care; units and overcome this barrier. The All-Russian social movement “Home Palliative Care” in 2001; teams were encouraged to register specific data and a “Medicine for quality of life” was created more 5 years - Palliative Care service was organized in the Center of general description of the service into the web based ago and was aimed to facilitate consolidation between integrated Services in city Panevezys in 2003. directory on line. Before registration a contact person medicine professionals and a civil society. Since 2006 The Palliative Care education for nursing and medicine had to be assigned a password and before publishing all-Russian forum “Medicine for quality of life” has students started in Kaunas University of Medicine. the head of service was automatically informed. The started. The forum takes place in capitals of all of 7 The first strategic document regulating Palliative Care information should be continuously updated by the federal districts of Russian Federation (Moscow, St. - in Lithuania was the program of the Prophylaxis and service providers. A printed version of the register was Petersburg, Nizhniy Novgorod, Rostov-na-Donu, Control of Cancer (2003); it was mentioned that released in June 2008 proceeded invitation letters to Yekaterinburg, Novosibirsk, and Khabarovsk). By this palliative treatment and care of oncology patients can update the online version and to proof read the slightly time more than 8 thousand delegates from 67 regions be offered in oncological institutions and nursing edited description of the service etc. “Palliativguiden” of Russia took part in the forum. Not only medicine hospitals. has been sent to health care providers, decision makers, professionals, but representatives of the executive and Other documents of Health Ministry of Lithuania politicians and the media to increase knowledge about legislative power, and activists of some political parties regulated prescription of drugs (2005-2006). palliative care and to be used as base for further took active part in the work of the forum. The program Palliative Care was legalized on January 11th, 2007 as development. of the forum includes palliative care conference, separate service for adults and children by the Health Results: There are 82 in-patient services and 72 home seminars and round tables. We hope that social Ministry of Lithuania. care services available in Sweden. The data has been movements will promote the further development of Accreditation of Palliative Care services was confirmed validated by assigned palliative care specialists, a nurse the palliative care in Russia. on February 14th, 2007. Basic costs of different forms and a physician, in each county. for PC services (inpatient, outpatient, day care, home Discussion: The online version of “Palliativguiden” is care, mobile team) were set for adults and children in publicly available and therefore a resource in searching PE 2.S382 May 16th, 2008. for a palliative care service. It is a potential problem that Conclusion: In these days we have the time for the services in the guide do not understand the need to Palliative medicine in Germany - Four years’ creation of contemporary Palliative Care in Lithuania. keep the online register updated. There is also a not update God bless us. fully understood demand to describe the services in an informative and clear way. “Palliativguiden” has already Jaspers B1, Schindler T2, Clemens K E1, Klaschik E1, Vissers been used to locally start a debate on the need for K3 PE 2.S378 further development of specialised palliative care. 1University of Bonn, Centre for Palliative Medicine, Malteser Hospital Bonn/Rhein-Sieg, Department Implementation of palliative care (PC) as a state Science and Research in Palliative Medicine, Bonn, programme (SP) in Latvia PE 2.S380 Germany, 2German Association for Palliative Medicine, Berlin, Germany, 3Radboud University Sosars V1, Streinerte B2 The new legislative-normative basis for Nijmegen Medical Centre, Department of 1RAKUS, Latvian Oncology Centre, Palliative Care Unit, development of the palliative care in Georgia Anaesthesiology, Pain and Palliative Medicine, Riga, Latvia, 2RAKUS, Latvian Oncology Centre, Nijmegen, Netherlands Administration of the Hospital, Riga, Latvia Kordzaia D1, Alibegashvili T1, Rukhadze T1, Janberidze H1 1Palliative Care Association ‘Humanists’ Union’, Tbilisi, Background: In 2008, 7 European countries Aim: Analysis of the situation of PC in Latvia, stating Georgia (Belgium, France, Germany, Great Britain, Poland, priorities to develop SP, implementing PC as a system in Spain and The Netherlands) each made a national the country from 2008 to 2015. Pain is the one of the most problematic issues in inventory of the state-of-art in palliative care (PC) in Study design: In January, 2008 Ministry of Health chronic incurable patients. Today, the opioids are the framework of the EU-funded project Best Practice (MH) realized necessity of PC in Latvia. MH designed it recognized as scientifically confirmed and necessary in PC. In 2004, a study on the state-of-art in PC in 11 as a SP. Policy consisted of several steps: pain-relief medications in patients with advanced European countries was conducted in order to explore 1) establish a group of 8-10 experts: PC specialists, cancer, cardio-vascular, neurological diseases, AIDS, etc. which achievements are recommendable for further health policy makers, financial experts Taking into the account the legal restrictions for opioid governmental commitment in the development of PC 2) analyze situation, statistics, problems in Latvia both circulation in many countries, resulted in ethical and in Germany. The collected information is used to give in oncology and non-oncological diseases. juridical nonsense, European Committee give the a four years’ update on the development in Germany.

sessions From 60000 oncological patients (pts) 10000 have a recommendations to the governments to access and Methods: Review of literature and policy documents need for active PC. In 2007 PC received 2411 pts. About improve the legislation for providing of the quality PC including grey literature on a regular basis during the 20000 - 25000 pts with non-oncological diseases: and pain relief. Critical reconsideration of legislative- course of the data collection, development of a

(Saturday) HIV/AIDS, neurological, resistant tbc, heart, renal, normative basis of PC was started in Georgia in 2006. questionnaire and glossary (2004 by a national, 2008 hepatic failure pts needed PC which is not available yet. Office of Coordinator of PC National Program an international focus group), interviews with Poster There are 113 specialized PC in-patient beds in Latvia (OCPCNP) together with the Ministries of Labor, national experts. mostly for oncological pts, but need is for 125-130 beds. Health and Social Affairs (MoLHSA), the Ministry of Results: Services: Increase in palliative care units 52% Day care centres, mobile teams, home care should be Internal Affairs (MIA) and Parliament Committee for (106/162) /beds 51% (823/1,240); inpatient hospices organized. SP includes development of the children PC. Healthcare and Social Issues, under the patronage of 14% (129/147)/ beds 14% (1211/1382); establishment Only 1 outpatient PC children team is in Latvia. Served First Lady of Georgia created the draft of amendments of new kind of specialised PC home care service. 207 children in 2007. 10 in-patient beds needed in 4 Laws of Georgia which were approved by Education: Establishment of a new sub-specialty in 3) define PC as a subspecialty, multi-, interdisciplinary Parliament of Georgia in April 08, 2007. palliative medicine (by 7/08 1,500 specialised approach Correspondingly: physicians); increase in number of chairs by 50% 4) stated main goals of the SP: access to PC, quality of - Definition of PC was added to National legislation; (2008: 4, with 4 more to be appointed soon) and of life. Subtasks - develop PC structures, evidence-based - PC was recognized as absolutely necessary component medical schools with mandatory PC tuition; PC, implement specialized knowledge: 6 different in system of medical aid; integration of PC in the education of physiotherapists.

198 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

Law: New law entitling patients to specialised less than 20% and experience of caring for the dying is to assist patients. The church tradicions and praies outpatient PC, regulation of remuneration contracts lacking, prepare patients and surrounders for death and gives with statutory health insurers (SHI); budget: ¤ Mill (b) the population expects professional health care at them belive for the new life. There are studies in 630 from 2007-2010. Volunteers: Now represented the end of life, and volunteers may not be accepted as Georgian that present the Georgian Orthodox rituals within the German Association for Palliative being helpful, surrounding terminal condition. The studies present Medicine. (c) among different support organisations competition diseases and death as well: rituals before a person’s Research: For the first time ever public funding and a lack knowledge of each others competences death; preparation for a funeral; funeral and (Deutsche Forschungsgemeinschaft); research network undermine effective coordination and collaboration, postfuneral period, services in a Church - blessings of of 4 universities with chairs in PC. (d) the majority of volunteers self limit their activities the cross at a grave and burial of the body. The Conclusions: Within only 4 years, the state of art in to bedside care only, knowledge of these traditions is of vital importance for PC and its recognition by the government, SHI and (e) there is no commonly accessable documeantation patients during both the disease course and dying public funders progressed considerably. Research in system, process, and it is also important for caregivers. the quality of PC practice is needed and will be (f) there no coordinating person (volunteer or Conclusion: At the moment, strong cooperation conducted in the framework of the EU project. professional). between medical practice, community and religion is Conclusions: A highly professionalised health care needed to make progress in palliative care and provide system, low rates of home deaths and deficits in quality of life for patients with terminal conditions. PE 2.S383 communication and collaboration among regional Palliative care for patients and their families must support teams are major barriers for effective contain by all means a religious component. Spiritual Palliative cancer care: Developing subspecialty of community Palliative Care compared to Kerala. Over- correction is of crutial importance that was proved by both palliative care and of oncology medicalisation of the end of life is often criticized in our study. our country but the delivery of “humanistic” care and Strasser F1, Cherny N2 support through non-professionals/ volunteers seem to 1Oncological Palliative Care Medicine, Oncology & be rarely accepted and has no tradition in our country. PE 2.S387 Palliative Care Center, Cantonal Hospital, St.Gallen, Switzerland, 2Share Zedek Medical Center, Jerusalem, Preferences of advanced lung cancer patients for Israel PE 2.S385 patient-centered information and decision- making. A prospective multicentre study in 13 Aim: Due to successes of multidisciplinary anti-cancer Do patients in palliative care receive hospitals in Belgium treatment more people are living longer with advanced, informations about advance directives? incurable cancer, typically challenged with various Pardon K1, Deschepper R1, Vander Stichele R2, Bernheim J phases of cancer control, recurrences and finally death. Pautex S1, Deramé L1, Lasne-Hachin B1, Paillet D1, Guisado L1, Mortier F3, Deliens L1, EOLIC-Consortium Throughout the course of illness patients experience a H1, Zulian G B1 1Vrije Universiteit Brussel, End-of-Life Care Research fluctuating myriad of - for cancer diseases typical - 1Division of Palliative Medicine, Geneva, Collonge- Group, Brussels, Belgium, 2Ghent University, Heymans symptoms, distress, and complications of cancer and/or Bellerive, Switzerland Institute for Pharmacology, Ghent, Belgium, 3Ghent adverse effects of treatments. To describe oncology University, Bioethics Institute Ghent, Ghent, Belgium societies efforts to develop and integrate palliative Research aims: Since 1996, the Geneva legislative cancer care (PCC). frame makes a large place to advance directives (ADs). Aims: To identify the preferences of advanced lung Methods: Description of key elements of past and At each admission, the availability of completed ADs is cancer patients for information and decision-making recent ESMO & ASCO PC initiatives, including policy, to be checked and patients should receive information participation in treatment options, healthcare-setting education, service development, research, and about ADs. The aim of our study was to measure the transfers and end-of-life decision-making. conferences. Comparison of findings with EAPC’s number of patients with an advanced oncological Methods: Over the course of one year, pulmonologists efforts and leadership on providing norms and disease who had completed ADs before admission, and oncologists in 13 hospitals in Flanders, Belgium, standards of PC. those who were interested to receive the information invited patients with an initial diagnosis of non-small- Results: ESMO and ASCO PC committees published and those who completed ADs during hospitalisation. cell lung cancer IIIb or IV to participate in the study. (2003 / 1998, 2008) organization-leadership approved Methods: Retrospective chart review of patients with Shortly after inclusion, the patients were interviewed and peer-reviewed policy statements. Developing an advanced oncological disease admitted from August with a structured questionnaire, and subsequently education programs and associated service models 2007 to July 2008 to the Division of Palliative Medicine every three months, until death, a follow-up interview provide knowledge about of the University Hospitals of Geneva. was organised. A) key PC values & principles (e.g., dignity, autonomy, Results: 365 patients were hospitalized during this Results: 128 patients with a median estimated survival communication [disclosure, existential themes], period. For 232 patients, no informations about ADs time of 10 months were eligible and participated. quality-of-life & priorities directed problem-based were available in their chart. 133 were thus analyzed Almost all wanted information on diagnosis, treatment decision-seeking, advanced directive processes, (mean age 75.5±12.9). 15 (11%) had signed ADs at and cure rate and slightly fewer on life expectancy multidimensional assessment, end-of-life & admission of which 9 were completed during a (88%). Sixty-three percent of patients preferred to be bereavement care, patient & family empowerment, previous hospitalization. 19 patients received complete informed about palliative options and 57% about end- continuous coordination of services, multi-professional information, but further process stopped because of the of-life options. In treatment decision-making, 63% of approaches), and onset of delirium or worsening condition in 8, and patients preferred the doctor to make decisions. In end- B) cancer-specific PC issues (cancer symptoms & simple oral transmission of wishes and values in 11 of-life decisions, 84% of patients preferred to be complications, alleviation or prevention of side-effects with, five of them designating a surrogate. Twenty-one involved in decision-making. of anticancer interventions and their use to improve (17%) patients completed and signed ADs during Conclusions: A patient-centered approach to decision- symptom control in the context of state-of-the-art hospitalization. There were significantly younger than making participation in advanced lung cancer patients symptom control). patients not completing ADs (mean age 67.9±14.3, implies full information for most patients, as well as A key challenge is the need for both cancer-specific P=0.013). Main items were indications for attempt at participation in end-of-life decision-making. The and PC specialists’ competencies, requiring resuscitation, introduction of artificial nutrition and complex pattern of preferences of an advanced lung competency-based shared-care (1°, 2°, 3° PC). Quality hydration, palliative sedation and autopsy. cancer patient should be thoroughly explored by the improvement and awards (e.g., ESMO designated Conclusion: Written informations about ADs are still treating physician, and separately with regard to centers) initiatives support the process of integration. not developed at a satisfying level in the patient’s different types of decision making (treatment options, Conclusion: ESMO and ASCO take active steps towards charts. Completion of ADs concerns a minority of healthcare-setting transfers and end-of-life decision- development of PCC, its important that PC physicians relatively young patients. Patients with advanced making). are aware of and contribute to these initiatives. disease should know more about ADs and should be encouraged to complete them early in the course of an incurable disease. PE 2.S388 PE 2.S384 The effect of recording consultations involving Transfer of the Kerala Neighbourhood Network PE 2.S386 the transition to palliative care on quality of life in Palliative Care (KNNPC) to Switzerland: of patients with upper GI or ENT cancer; A pilot Mission impossible? Georgian Orthodox traditions and spiritual help study for cancer patients Eychmueller S1, Schneider N1, Domeisen F1, Forster M1 Uitdehaag M1, van der Velden L-A1, Spaander M1, de Boer 1Cantonal Hospital St. Gallen, Centre for Palliative Care, Shavdia D M1, Gotsiridze T2, Shavdia M D1 M1, Monserez D1, Steyerberg E1, Kuipers E1, Siersema P2, St.Gallen, Switzerland 1Cancer Prevention Center, Palliative Care, Tbilisi, Pruijn J1 Georgia, 2Transfiguration Convent, Tbilisi, Georgia 1Erasmus MC, Rotterdam, Netherlands, 2UMC, Utrecht, Question: The Kerala Project NNPC is basically run by Netherlands volunteers, and professionals in Palliative Care provide Description: The first Church care center (hystorical

interventions only if called by the network. In three name Ksenon) of incurable s was biult by the King Objective: The provision of recordings of key sessions different settings in Eastern Switzerland/ Liechtenstein David Agmashenebeli in 1106-1110 years. During the consultations may benefit adults with cancer, although (urban, rural, mixed) an explorative study showed a Soviet era before 1990 patients have been treated there is hardly any evidence on the potential value of

variety of different services that offer support at home Georgia without religiou support. Nowadays more and tapes in the later stages of cancer care. In this pilot-study, (Saturday) for severely ill patients and their families, but a lack of more people approach to the church and revival of the we studied the feasibility and desirability of palliative collaboration and coordination among these services old religious Orthodox traditions is obvious in the bad news consultation tapes to patients with cancer. Poster have been stated. In addition, volunteer support is Country. The role of spiritual support is growing day by Methods: Twenty-one patients with irresectable or rarely integrated in home care. day. This gives incentive to incurable patients for future recurrent esophageal or head or neck cancer were Methods: potential barriers for collaboration and of their lives. In the first Palliative Care Clinic wich was randomised to receive a CD of their bad news exchange and integration of volunteers were analysed established in Tbilisi (2005 year/Georgia), before today consultation (n=11) or not (n=10). Data on quality of life during semistructured interviews as well as through the (1.10.2008) have registered 1138 patient and from them (EORTC QLQ-C15 PAL, Hospital Anxiety and Depression “world cafe- method” during regional round tables 908 (79,8%) was Orthodox. scale, loss of control scale, Patient Information Need calling together the different support organisations. Objectives: Death itself and death of cancer patients Questionnaire) and openness to discuss cancer Results: There were several barriers detected which provoke very bad feeling in patients and their family (Openness to Discuss Cancer in the Family scale) were may not exist in Kerala but in Eastern Switzerland: members as well as caregivers, therefore the main collected at randomisation and 1 week and 1 month (a) Death and dying occurs in the homecare setting in purpose of the spiritual care is to help medical personal afterwards. In addition, all problems concerning the

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 199 Poster sessions (Saturday)

procedure were documented. by a large award-winning Arts Team at St. Christopher´s an explanation about the necessity of adjuvant Results: We experienced little procedural problems, Hospice, London will be presented for consideration chemotherapy or not. although it was difficult to mark the initial palliative (Hartley N. & Payne M. 2008). Case studies from the Results: Thirty-seven of the 74 appropriate cases were consultation. Data of 4 patients could not be used, as recently published book ´The Creative Arts in Palliative informed of this study, and all except one patient these patients refused follow-up. These patients were Care´ editied by Nigel Hartley will also be used as part consented to participate between June 2005 and more distressed at baseline than compliant patients. All of the presentation. February 2007. Twenty-seven participants completed 10 distributed CD’s were listened to, 8 by patients and 10 The arts cannot work in isolation. The results of a the study and were analyzed. Nine (33.3%) of these 27 by their relatives or general practitioner. Three quarter of qualitative evaluation study asking members of a large participants were diagnosed as having adjustment the patients found the availability of the CD to be of multi-professional team to comment on their perceived disorder. There were no differences in demographic moderate or high importance. Patients in the CD group view of the effectiveness of such work when used as a data, STAI trait anxiety score and MPI score between the showed a higher deterioration on 11/17 and 13/17 planned part of patient´s care will also be shared. participants with or without adjustment disorder. At aspects of quality of life at 1 week and 1 month, Through the sharing of the artwork, case studies and the pre-surgical interview, the STAI state anxiety score respectively, than patients, who did not receive a CD. evaluation study results, the true efficacy of, and depth of the participants was high (49.5±10.30). After Openness to discuss cancer in the family was improved of meaning acheived by, using the creative arts as a pathological examination of the tumors, it was found at 1 month in the CD group, but not in the group central part of multi-professional working will be that 12 patients had cancer (Malignant group) and 15 without CD. valued and understood. patients had a benign tumor (Benign group). At pre- Conclusion: The recording of a consultation is well surgery, the prevalence of adjustment disorder and the perceived by patients with a poor prognosis and their level of anxiety in the Benign group were similar to relatives. Based on our results, a large randomised study PE 2.S391 those in the Malignant group. There was a second surge investigating a consultation CD in these patients is of anxiety in patients who needed chemotherapy. feasible and desirable, in order to confirm or to exclude Dying to talk - Engaging the public in advance Conclusion: These findings demonstrate that patients the initial, partly negative results. care planning with suspected ovarian cancer experience a high level of anxiety. Physicians should be aware of the risk of Russell S J1, Taylor R2, Satterwaite H3, De Silva C3, Ritter M3 adjustment disorder in these patients. Additionally, PE 2.S389 1Hospice of St Francis, Education, Berkhamsted, United ovarian cancer patients need psychological assessment Kingdom, 2Hospice of St Francis, Berkhamsted, United during the course of treatment. An observational study of alcohol-related Kingdom, 3Hospice of St Francis, Fundraising, problems in patients with advanced cancer Berkhamsted, United Kingdom PE 2.S393 Webber K1, Davies A1 Aim: Hospice care helps patients and families talk 1Royal Marsden Hospital, Sutton, Department of about difficult subjects. Advance care planning is key to A longitudinal study comparing two different Palliative Medicine, Sutton, United Kingdom UK end of life policy. Hospices publicly engage through periods of evolution of an oncological home-care fund raising but this discourse rarely tackles “death” team for advanced and far advanced cancer Aim: To look at all alcohol related problems i.e. directly. An open meeting was designed to engage the patients “hazardous drinking” / ”harmful use”, and “alcohol well public in the concept of advance care planning. dependence” in a cohort of palliative care patients at a Method: Hospice clinicians, education, fund raising Varani S1, Fierro C1, Brighetti G2, Casadio M1, Pannuti F1 UK oncology centre. and PR brain stormed the theme and meeting design. 1Fondazione ANT Italia ONLUS, Bologna, Italy, Methods: This was an observational study conducted Design included visual triggers (communication quotes 2University of Bologna, Department of Psychology, at the Royal Marsden Hospital (Surrey). Patients were and images); audience generated questions, a user, Bologna, Italy asked to complete the Alcohol Use Disorders public figure and hospice consultant speaker. 85 Identification Test (AUDIT: a validated tool that assesses participants attended the meeting including 20 staff Background: In health-related organizations, the “hazardous drinking” / ”harmful use” and “alcohol members and volunteers. amount of stress felt by professionals is generally higher dependence”) [WHO 2001], Hospital Anxiety and Results: Discussion within the team to provide a than in other categories and could bear dramatic Depression Scale (HADS) and the Memorial Symptom forum to discuss the theme and concern about consequences for working efficiency and individual Assessment Scale Short Form (MSAS-SF: a validated tool potential emotional harm to those attending. and team wellness. that assesses the presence/distress caused by physical Dissonance between what people expected to hear (the Purpose: The purpose was to compare the assessment and psychological symptoms). hospice) and the meetings theme (advance care of well being perceived by the oncological home care Results: 120 patients completed the study. The mean planning).Challenges of using an eloquent user team in two different periods. age was 61 years, there were 65 (54%) women, and the praising the Hospice instead of the meetings’ theme. Methods: At first, the well-being of the operators was range of cancer diagnoses was representative of referrals Audience generated questions were specific about the studied in 2 dimensions: individual and organizational. to the palliative care service. 18% of patients met the hospice (referrals and catchments areas).Attendance Secondly, 3 years after, measurements were repeated in criteria for alcohol use disorder, and 6% met the criteria from known hospice supporters. Difficulty in engaging order to compare data. The sample consisted of 115 for “alcohol dependence”. There was a correlation the audience on this subject in this forum. Multi operators, 80 physicians and 35 nurses. The study has between the AUDIT score and gender (males > females: professional collaboration enabled a wide conceptual been developed by the ANT Italia Foundation, at 11 P = 0.012), cancer diagnosis (positive correlation with framework. ANT oncological hospital at home (ANT-OHH) in Italy. head and neck cancer: P = 0.002), and smoking Conclusions: It is difficult to talk about mortality. The Data were analysed using ANOVA for out-group (positive correlation with current smoking habit: P < theme was provocative, the audience questions were comparison and Spearman’s ranks correlation. 0.001). There was no association between AUDIT score not. Feedback was positive. It is unclear whether we Results: Both first and second results showed a and anxiety (P = 0.612), depression (P = 0.085) and met our objectives. Terror Management Theory medium-low level of burnout in the comprehensive presence of distressing physical symptoms (P = 0.908). suggests that mentioning the word “death” raises ANT team. In our data, Emotional Exhaustion and De- Conclusions: The prevalence of alcohol use disorders anxiety. People react differently compared to a situation personalization of ANT operators were significantly in this cohort of patients with advanced cancer is less where death hasn’t been mentioned. Anxiety reducing lower compared to normative data. In our sample, that that reported in the general population in the UK strategies should underpin the forum. The meeting was organizational climate was generally better than in the (i.e. 26%) [DOH, 2005]. However, the prevalence of comfortable but formal possibly not the right structure Italian normative sample at all levels. However, in the alcohol dependence perse in this cohort of patients was for the meetings theme. Perhaps talking about the first study the two bigger teams of sample considered similar to that reported in the general population in the Hospice and fundraising is as close as many will come work with a less cooperative behaviour then the other UK [DOH, 2005]. Interestingly, it would appear that the to thinking about mortality. The meeting influences teams. Moreover, the operators of these teams felt less physical and psychological burden associated with our public engagement strategy and demonstrated the involved and safe in decision-making process and in cancer does not lead to increased incidence of alcohol benefits of multi disciplinary working. information circulation; finally, they perceived less misuse in our population. support of innovation and they described an interaction frequency inferior to normative data. These PE 2.S392 data changed with the follow-up, proving an operator’s PE 2.S390 higher work satisfaction in all dimensions. It may be Anxiety and prevalence of psychiatric disorders supposed that these positive results are connected with ´The art of end of life care´ - How the creative among patients waiting for surgery with the modifications in the organization of work teams arts can communicate and deliver an effective suspicion of ovarian cancer that ANT has worked out in the last years, such as the end-of-life care service work team in mini-ward reorganization and the Sukegawa A1, Miyagi E1, Asai-Sato M1, Saji H1, Sugiura K1, construction of a multidisciplinary, more efficient and Hartley N A1 Matsumura T2, Kamijyo A2, Hirayasu Y2, Okamoto N3, functional new medical institute. 1St. Christopher’s Hospice, Supportive Care, London, Hirahara F1 United Kingdom 1Yokohama City University School of Medicine, Department of Obstetrics and Gynecology, Yokohama, PE 2.S394 Expression, psychological exploration and ritual have Japan, 2Yokohama City University School of Medicine,

sessions always been central to the delivery of an effective and Department of Psychiatry, Yokohama, Japan, Burnout syndrome in palliative care units complete palliative care service. However, it is only 3Kanagawa Cancer Center Research Institute, Division more recently that the creative arts have begun to be of Cancer Prevention and Cancer Control, Yokohama, Pereira S M1 1

(Saturday) proved as a dynamic force when offfered as an Japan Azores University, Angra do Heroismo’s Nursing opportunity for those who are dying to tell their story School, Angra do Heroísmo, Portugal Poster and leave a legacy behind when they die. Aims: The goal of the current study was to determine This presentation will focus on the responsibility of the anxiety level and prevalence of psychiatric disorders The burnout was first described by Freudenberger, in end-of-life care institutions to provide a broad and among patients waiting for surgery of ovarian tumors. 1974, as a phenomenon characterized by a “(...) state of varied range of services in order to address the ´total Also analyzed were the predictive factors for psychiatric fatigue or frustration caused by the consecration to a pain´ that they claim to deliver (Saunders 1973). A disorders and changes after surgical diagnosis. cause, a way of life or a relationship that did not match range of dynamic and moving examples will be used in Methods: Patients who underwent surgery for ovarian expectations “(Delbrouck, M., 2006:15). This implies a oder to prove the efficacy of such work when used as tumors were examined before and after surgery with strong sense of lost identity, in which the person puts part of a patient´s total care package at the end of life, the Mini International Neuropsychiatric Interview, the herself into question, feeling empty. Often, burnout is including a range of DVD´s and tape recordings created Spielberger State-Trait Anxiety Inventory (STAI) and the seen as a result of great personal involvement, by patients as well as other artworks such as paintings, Mausley Personality Inventory (MPI). Participants motivation and commitment. It can be defined in its poetry and music. Examples of new research carried out diagnosed with cancer were examined a third time after multidimensionality: emotional exhaustion,

200 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) depersonalization, lack of personal and professional the family and practitioners hold different perspectives Kingdom, 3Institute of Palliative Care (IPAC), completion. The provision of palliative care can lead (Breen, Abernathy, Abbott & Tulsky 2001). A further Oldenburg, Germany health care provider’s to physical, psychological and challenge of paediatric palliative care is the child’s emotional exhaustion, which may develop to burnout. continually changing physical, emotional and Background: Palliative care (PC) is a discipline that From the surveys in this area, it is evident the absence cognitive development and how such impacts on requires specific competencies, skills and attitudes of of specific studies on this syndrome, either in Portugal understanding of their condition (Watterson & Hain professionals in the care of the dying patient. Core or abroad. It is therefore essential to understand this 2003). attitude can serve as a label describing the phenomenon, particularly at the level of burnout Methods: Semi-structured interviews were conducted professional’s self-image. professionals working in the field of palliative care with three adolescents (2 = non cancer condition, 1 = Objective: The study aimed to describe how PC present. cancer condition) and their parents. The aim of each professionals describe their core attitude (in general Aims: interview was to explore the participant’s lived and in PC work) and to identify certain features of core (i) To understand the burnout syndrome in physicians experiences of life-limiting illness. attitude. and nurses in the area of palliative care in Portugal, Findings: An interesting theme that arose pertained to Methods: We conducted a survey with 5 open (ii) To identify the levels of burnout of Portuguese truth telling and the communication of prognosis questions as well as socio-demographic data was palliative care physicians and nurses and between parent and adolescent and adolescent and administered. Participants were asked to describe their (iii) To identify the risk factors for the development of professional. Interestingly, each adolescent was aware of understanding of the term core attitude. 350 burnout in the Portuguese palliative care physicians their prognosis despite this not being discussed with professionals (physicians, nurses, social workers, and nurses. parents or in any great depth with professionals. The psychologists) of 63 palliative and hospice care Methods: adolescent’s each talked about wanting to discuss institutions (inpatient and home care) in Germany (i) Application of self-fulfilment questionnaire - terminal phase, funeral and ‘being remembered’ plans completed the questionnaire (51.31% response rate). Maslach Burnout Inventory -General Survey, with key professionals - so as to not worry or upset their Data were analyzed using qualitative content analysis. (ii) Observation of the work contexts - Portuguese parents. Conversely, parents talked of instilling hope Results: When asked to describe their attitude in the palliative care units/teams, and ambition in their children and did not want to work with dying patients, professionals named (iii) Interviews conduction with Portuguese physicians focus on their child’s prognosis in any direct discussion elements and features which could be grouped into and nurses who pursue their activities in palliative care. with their child - although they were aware that such a three topics: The results underline the importance of promoting the conversation may soon be looming. (1) personal characteristics (i.e. confrontation with prevention of burnout at palliative care. The Conclusions: This study demonstrates that palliative death and dying, calmness), development of the burnout syndrome in physicians care is moving forward as children are establishing (2) values (i.e. openness, honesty, respect), and and nurses in palliative care has serious consequences, good relationships with their health care providers and (3) skills in the care of the patient (i.e. empathy, being both for themselves, or the consequences that entails want to engage in very difficult illness related present, respecting autonomy). for patients and their families. conversations with them. Alliances can be made Participants’ descriptions of the term core attitude between professionals and adolescents - but efforts are could be classified into the following categories: needed for this to happen. In this study, key (1) image of man, PE 2.S395 professionals were relied upon for honest and open (2) basis of action, discussion and it was perceived a necessity for such to (3) belief, Sexuality and intimacy for palliative care protect and aid parents and to ease the worry of the (4) life philosophy, patients adolescent’s themselves. (5) personality and (6) attitude. Wasner M1, Roser T1, Cohen R S2, MacKinnon C J3, Stahn Whether the concept refers to ‘attitude’ in the sense of T1 PE 2.S398 ‘opinion/ judgement’ or designates a ‘stance’ or a 1University of Munich, Interdisciplinary Center for certain ‘mindset’ was discussed controversially. Sample Palliative Medicine, Munich, Germany, 2SMBD Jewish Hope and quality of life in patients with characteristics such as gender, working field, and General Hospital, Montreal, Canada, 3McGill advanced cancer occupational group show differential influence on University, Department of Educational and Counseling personal concepts of core attitude. Psychology, Montreal, Canada Stelcer B1, Leppert W2, Krawczyk R3, Block B4, Milecki P5 Conclusion: Core attitude seems to be a feasible 1Karol Marcinkowski University of Medical Sciences, concept for heightening awareness of personal goals Background: Studies show differences in the Department of Clinical Psychology, Poznan, Poland, and ethical influences in the care of the dying. It may understanding of sexuality between palliative care 2Poznan University of Medical Sciences, Chair and serve as a label subsuming important competencies in patients and health care professionals. Patients consider Department of Palliative Medicine, Pozna?, Poland, PC work. sexuality as important for their quality of life, even at 3Pleszew Medical Centre, Palliative Care Department, the end of life. Studies also point to a discrepancy Pleszew, Poland, 4Catholic Lublin University, Lublin, between the need of patients to talk about sexuality and Poland, 5Great Poland Oncology Centre, Radiotherapy PE 2.S400 a lack of attention in palliative care. Department, Pozna?, Poland Goals: The study aims to gain insight into how Core attitude in different working fields - Results palliative care patients experience sexuality. Specific Introduction: Hope is an important factor in quality of a representative survey of professionals in goals are to learn how patients define and experience of life assessment, which indicates for the positive palliative care in Germany sexuality, how this evolved during the illness, and how expectations for the future. Hope is intrinsically linked palliative care can meet the needs of patients. with palliative care for patients with advanced cancer. Ramsenthaler C1, Geiss G1, Krischke N1, Bausewein C2, Methods: The patients of two palliative care units Patients and methods: Quality of life was assessed in Simon S3 (Montreal, Canada and Munich, Germany) were asked 50 advanced cancer patients at the In-patient Palliative 1Institute of Psychology, Carl-von-Ossietzky University to take part in the study. The single meeting interview Care Unit in Pleszew (30 women and 20 men) with of Oldenburg, Department of Health and Clinical comprises demographic data and a semi-structured McGill Quality of Life Questionnaire, own Hope Psychology, Oldenburg, Germany, 2King’s College interview, recorded on audio tape for verbatim Questionnaire and exploring hope by Osgood’s London, School of Medicine, Department of Palliative transcription. Both study sites make use of additional Semantic Differential. The hope components include: Care, Policy and Rehabilitation, London, United questionnaires. control scales 4 items, situation factor (health) 8 items, Kingdom, 3Institute of Palliative Care (IPAC), Results: At the moment, 22 of 40 asked to participate temporal factor (future) 8 items, intrapersonal factor Oldenburg, Germany agreed (Munich: 14/33, Montreal 6/7). Patients’ ages (religious faith) 8 items, emotional factor 8 items. range from 33 - 86 years, 12/22 are female, most are Results: There is a significant difference between hope Background: Palliative care is a discipline that married or in partnership. intrapersonal factor (faith) in the struggle with disease- requires specific competencies, skills and attitudes of Definitions and meaning of sexuality typically focus on induced stress - for women it was significantly more professionals. ‘Core attitude’ describes the basis of being close, some explicitly include intercourse and important (chi square test p<0.015), the level of actions and thoughts in the work with dying patients. sexual functioning. Patients report changes in the education also has significant impact on this factor - Objective: The aim was to describe the change of core experience of sexuality, sometimes changing to patients with the lowest (basic) level of education have attitude through work experience and to evaluate the intimacy. Data show a significant decrease in sexual the highest scores regarding faith (p<0.043). The higher potential influence of setting (PCUs, hospice and home activity (p=0.01) and interest (p=0.01). Most patients level of hope was significantly connected with the care) and profession (physicians, nurses, social workers, report stability or improvement with partnership and better support. There is a positive correlation between psychologists). sexual relationship. Participants explicitly wished to be the level of quality of life and all aspects of hope: Methods: We conducted a survey with 5 open treated as a whole person; most wished for privacy control scales, situation factor (health), temporal factor questions as well as socio-demographic data. 350 when in an in-house clinic. (future), intrapersonal factor (faith) and positive professionals (physicians, nurses, social workers, Conclusion: All palliative care patients reported emotional state. psychologists) of 63 palliative and hospice care changes in the understanding and experience of Conclusions: This study confirmed the positive institutions (inpatient and home care) in Germany sexuality while the importance for their quality of life correlation between well-being, quality of life level and completed the questionnaire (51.31% response rate). remained stable. Functional aspects decreased while hope, which may be a target of a psychological Data were analyzed using qualitative content analysis.

being close and experiencing intimacy increased in intervention. After development of meta-categories, group sessions importance. Participants wish for respect and privacy differences were analyzed for significance (Chi-square when in health care institutions. test and contingency coefficient).

PE 2.S399 Results: 36.5 % of professionals denied a change of (Saturday) personal core attitude after beginning to work in PC. PE 2.S396 Definition and elements of core attitude in Those participants who support a change in core Poster palliative care - Results of a representative survey attitude, specified areas and elements of change such Truth telling in palliative paediatric care: The of professionals in palliative care in Germany as: adolescent’s perspective (1) to set priorities, Ramsenthaler C1, Geiss G1, Krischke N1, Bausewein C2, (2) holistic viewing, Rodriguez A M1, King N1 Simon S3 (3) calmness, 1University of Huddersfield, Behavioural Sciences, 1Institute of Psychology, Carl-von-Ossietzky University (4) fulfilment in work, Huddersfield, United Kingdom of Oldenburg, Department of Health and Clinical (5) self-reflection Psychology, Oldenburg, Germany, 2King’s College (6) emotions, Background: There is often uncertainty as to what is London, School of Medicine, Department of Palliative (7) values, and in a dying child´s best interests and conflicts arise when Care, Policy and Rehabilitation, London, United (8) support of the patient.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 201 Poster sessions (Saturday)

Preliminary analysis showed that gender and setting Ad (2): The cognitive dimension shows no influence on patients being in the same boat”, “positive have a significant relationship to frequencies with strain/well-being in the pc context. The emotional commitment and motivation to start exercise that was which categories were assigned, i.e. professionals in dimension is related to the importance of work (p<.001), difficult on their own” and “increased energy”. The PCUs and inpatient hospice services named support of aversions to the patient (p=.001) and inner peace/ findings indicate that attending group exercise gave the the patient as most important area of change (?2= 10.6; balance (p<.001). The behavioural dimension has patients meaningful tasks and made them structure the p< .03). Further analysis and results will be presented at influence on the importance of work (p=.001) and on day. Several patients expressed they had no initiative to the conference. the experience of occupational success (p<.001). be physically active by themselves, so this was a golden Conclusion: Almost two-third of the participants Conclusion: The study shows the relevance of opportunity to be more physically active. The stated that their core attitude had changed since they professional skills in communication and decision- physiotherapist was important in making the patients started working in PC due to work experience. Working making. The items that were modified and used here secure in what activities that was safe for them. In field and setting are related to areas of change. can serve as a basis for the construction of a conclusion, palliative cancer patients express a benefit communication evaluation tool for the medical and pc from attending in group exercise training. It gives the context. patients energy and helps structure the day. PE 2.S401

Social support of patients, family members and PE 2.S403 PE 2.S406 professionals in palliative care Public awareness of palliative care in Romania Art therapy effectiveness on pain and others Oldenbourg R1, Simon S2, Belschner W1, Geiss G1 symptoms for palliative care inpatients: A pilot 1Institute of Psychology, Carl-von-Ossietzky University Landon A S1, Dumitrescu M1, Muntean M1 qualitative study of Oldenburg, Department of Health and Clinical 1Hospice Casa Sperantei, Brasov, Romania Psychology, Oldenburg, Germany, 2Institute of Rhondali W1, Barmaki M1, Laurent A1, Filbet M1 Palliative Care (IPAC), Oldenburg, Germany Background: Palliative care has developed 1Hospices Civils de Lyon, Centre de Soins Palliatifs, significantly in Romania in recent years, but there is Lyon, France Background: Social Support plays an important role still huge potential for growth. Expansion of service in coping with death and dying. However, research provision throughout the country faces a number of Aim: Many complementary therapies as relaxation, lacks a systemic view because it mainly focuses on only barriers, not least a lack of public awareness of palliative massage, music therapy, have been reported to be one setting or one group of persons. care. effective in reducing symptoms and improving quality Objective: Study examines social support of patients, Aims: This study aims to assess public awareness of of life. Art therapy is a clinical intervention based on family members and professionals in six different kinds palliative care, before and after a countrywide the use of art’s medium to create an healing relation. It of institutions. Focus lies on interaction and awareness campaign. allows to help patients by distracting them from their comparison of these three groups influenced by their Methods: A questionnaire survey was designed by symptoms and usual cares. institutional setting. hospice experts and applied by an independent market The main aim of this study was to evaluate the effect of Methods: Quantitative analysis of a survey with 765 research company to a stratified random sample of the one-hour art therapy session on different symptoms participants in 58 institutions (oncology units, Romanian population, who were interviewed at home. (pain, nausea, fatigue, anxiety, depression...). palliative care units, intensive care units, nursing Following collection and interpretation of results from Method: A qualitative study was carried out to homes, hospices and outpatient care services). The the first survey, a nationwide awareness campaign was determine art therapy session’s perceptions and effects. University of California Social Support Inventory designed and delivered, including a media-clip for Semi-structured interviews were carried out over a (UCLA-SSI) was applied in modified form. Data was television and radio broadcast and articles in the local three-month period by the first author. The interviews analyzed by frequencies, correlation measures and and national press. The initial questionnaire survey was were guided by a prompt list to ensure that the same Oneway ANOVA using SPSS for Windows. then re-applied to a second population sample and the issues were discussed at each interview. Results: results of both surveys were compared. Results: Twelve patients were interviewed. Patients 1) Patients and family members both report to give and Results: 1233 individuals completed the initial survey. find art therapy was soothing and relaxing but also receive social support from each other. Less than 1% had a correct understanding of palliative stimulant. Art therapy was reported to increase desire to 2) Compared to patients and professionals, family care or hospice, although 12% of respondents had do but also fatigue. It allows them to take back with members describe to receive less social support. previously cared for someone in the terminal stages of their family. 3) Professionals mention colleagues as important illness and 9% reported another member of the Conclusion: This pilot-study confirm us the evidence source of social support. household having had to care for a terminally-ill for the efficacy of art therapy in reducing symptom as 4) Satisfaction of professionals with supervision as way patient. The second survey addressed 1250 individuals pain, and anxiety and the interest of a qualitative of social support varies highly across institutions and and a similarly low level of awareness was reported, design. But the small sample size of the study, the professional groups: Volunteers, mostly working in with only 1% able to correctly define palliative care. single-session evaluation limits the implications of outpatient care services, are most satisfied with the Conclusions: There is clearly a very poor awareness of theses results. supervision received. Doctors are either very satisfied or palliative care in the general population in Romania, not at all satisfied, nursing staff is evenly distributed. which was unable to be addressed effectively with a Conclusion: A systemic perspective in intervention is relatively short media campaign. This campaign PE 2.S407 highly recommended, e.g. taking into account the close confronted a number of barriers and difficulties - local relationship between patients and family members. elections and national parliamentary elections Development of the ‘Cardiff communication Social support of family members should be improved. coincided with the campaign period, the NATO summit skills toolkit’ Concerning professionals social support among in Bucharest affected mass media coverage significantly colleagues should be facilitated, e.g. through and time constraints also limited its efficiency. Further Pease N1, Finlay I G1 appropriate design of working time schedules and work measures need to be taken to improve understanding 1Cardiff University, Palliative Medicine, Cardiff, United spaces. and awareness. Kingdom

Aim: To develop simple communication strategies, PE 2.S402 PE 2.S404 appropriate to different levels of expertise, clinical setting and cultures. Communication and decision making as Withdrawn. To teach and evaluate these. professional skills - Results of a representative Method: We analysed consultations to establish the survey of professionals in palliative care key factors influencing a consultation deemed to go PE 2.S405 well. Reflective analysis was of: Otto M1, Krischke N1, Geiss G1 • our experience of teaching communication skills in 1Institute of Psychology, Carl-von-Ossietzky University Palliative cancer patients’ experience of various settings, including hot review of Oldenburg, Department of Health and Clinical attending group exercise training • our clinical practice, particularly errors Psychology, Oldenburg, Germany • tutor feedback from teaching ‘role play’ in culturally Oldervoll L M1, Nybø G2, Marini C3, Bye A2 diverse clinical settings Background: In palliative care (PC), relational 1Institute of Cancer Research and Molecular Medicine, • videoed consultations from postgraduates on the competencies represent an integral part of professional NTNU, Tronheim, Norway, 2Høyskolen i Akershus, Cardiff University Diploma course skills and attitudes. However, an instrument to assess Oslo, Norway, 3St Olavs Hospital, Trondheim, Norway • published literature. aspects and dimensions in professional communication We identified 6 key techniques (toolkit) which used and decision making in pc is still lacking. Physical exercise has recently become more common as appropriately would facilitate any consultation. These Objective: The study aims to describe professional skills part of oncology rehabilitation and is also proposed for were taught on a one day course by lecture and in communication and decision making (1). use in palliative care. Results from pilot studies show reinforced in ‘role play’ to an international cohort of Furthermore, their influence on strain and well-being in that advanced cancer patients are able and willing to 114 doctors and senior nurses.

sessions the professional environment is examined (2). attend in group exercise and they report increased well- Each participant was asked to self score their Methods: Quantitative analysis of a survey with 381 pc being and less fatigue after a period with exercise competence before and after receiving the teaching on professionals. The Checklist PK (professional medical training. However, no published studies have used the communication skills toolkit. Tutors who facilitated

(Saturday) communication) and the OPTION scale qualitative design to investigate the patients own the small group role play also scored these participants (communication skills in decision making) were applied experience in attending group exercise. The aim of the using the same scoring criteria. Poster in modified form. Data was analysed with descriptive present study was to explore how patients with Results: The toolkit comprises appropriate use of evaluation, analysis of variance (ANOVA), correlations, incurable cancer disease experience attending a 1. Comfort factor and regressions analysis using SPSS 15.0. physical exercise programme at the hospital. A 2. Language Results: purposeful sample with regard to age, gender, diagnoses 3. Listening Ad (1): The factor analysis identifies 4 dimensions of and performance status was made. Ten patients with 4. Reflection skills concerning communication and decision-making: different cancer diagnosis were interviewed. A 5. Question style the behavioural, verbal, emotional and cognitive qualitative design with audio-taped semi structured 6. Summarising. dimension. The analysis of these dimensions shows: the interviews was used. The findings identified important verbal dimension is closely related to the emotional themes such as “maintain and improve physical Full matched scoring results are available for 90 dimension (r=.610***), as well as the behavioural to the function”, “makes routines in every day life”, participants. The results indicate self scored cognitive dimension (r=.523***). “motivation from the physiotherapist and other improvement across all 6 facets; greatest change was in

202 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) the ‘use of reflection’. The tutors scores mirrored the correlates of colon cancer pts. In one study the - The differences in the reasons that lead caregivers to participants self scoring. personality questionnaire was administered to 106 hide the disease to the patient. Conclusion: The tool kit clarifies the key essentials of colon cancer pts and 99 matched healthy controls. The Method: Descriptive qualitative study. the consultation, recognising the complex scenarios statistically significant results showed that the main Questionnaire with 22 questions. frequently encountered in palliative care. The toolkit psychological features of the pts include controlling Population: Caregivers (age > 60 and < 60) of patients does not initially attempt to deliver a fully literate themselves and others, pent-up anger, increased admitted in our UCP with positive criteria of pact of communicator, versed in all nuances of a difficult demands of themselves and striving for perfection. silence. scenario. But it offers 6 key techniques / tools that can These features were independent of demographic and Statistical analysis of results with the program SPSS be applied to any consultation and developed as medical characteristics. These results were confirmed in 11.5. individual skills to improve the role-play and real world another study with 230 colorectal cancer pts. Further, Results (preliminary): consultation, particularly in difficult situations. differences in the questionnaire scores were found Caregivers < 60 years: between the genders corresponding to the expected Average age: 41.8 years medical differences. Finally the questionnaire was 76.6% women PE 2.S408 applied to identifying the detected personality If you had a terminal cancer, would you like to know correlates in an attenuated form in Crohn pts, known it?: YES: 66.66%; NO: 33.33% Preferences and experiences in the to be at risk for colorectal cancer. Discriminant analysis Reasons for not informing the patient: communication with physicians - A survey in showed that the questionnaire provided a highly - 80% I´m not able to tell him German patients with life-limiting illnesses significant correct identification of cases of the three - 76% He would discourage groups (165 healthy controls, 90 Crohn pts and 230 - 40% He would be more nervous Gog C1, Schubert B2, Annweiler B3, Braun H4, Dathe A5, colorectal cancer pts). The personality correlates of Caregivers > 60 years: Average age: 70.55 Hübner J6, Koch S7, Müller A8, Scharnagel R9, Schürmann R colorectal cancer can be summarized as focused on the 70% women P10, Schütte K11, Suchner U12, Schuler U S11 tendencies for perfect duty performance, and two If you had a terminal cancer, would you like to know 1Johann Wolfgang Goethe-University Hospital, Dept. contradictory thematic pairs: self effacement versus self it?: Yes: 30%; No: 70% Surgery, Frankfurt a.M., Germany, 2St-Jospeh-Stift, assertion, and closeness to others versus distancing Reasons for not informing the patient: Palliative Care Unit, Dresden, Germany, 3Helios- from others. These tendencies constitute potential - 90% I´m not able to tell Kliniken, Schwerin, Germany, 4MVZ Pain- and Palliative sources of tension. It is suggested that the identified - 80% He would discourage Care Center, Wiesbaden, Germany, 5Pharmacy, Jena, personality correlates be considered as psychological - 30% He would be more nervous. Germany, 6Lebenswerk GmbH, Berlin, Germany, risk factors for colorectal cancer. Conclusions: The prevalence of pact of silence has 7Maria-Hilf-Hospital, Bergheim, Germany, decreased at our PCU from 16% in 2006 to 12.6% in the 8Pädiatrisches Brückenprojekt, Dresden, Germany, same period of 2008. 9University Hospital Carl Gustav Carus, Pain Center, PE 2.S410 66.66% of caregivers < 60 years would like to know the Dresden, Germany, 10Palliative Care Unit, Hildesheim, diagnosis and prognosis of their disease, while only Germany, 11University Hospital Carl Gustav Carus, The Kawa Model - As a communication tool 30% of caregivers aged over 60 would like to know it. Department of Medicine I and Palliative Care Unit, There aren’t statistically significant differences in the Dresden, Germany, 12Fresenius Kabi, Erding, Germany Wedenby C V1, Gustavsson A-K L1 grounds of pact in connection with the age of the 1Sahlgrenska University Hospital, Occupational primary caregiver. Aim: To gather views and experiences of German Therapy, Gothenburg, Sweden The inability to talk about the prognosis of life and fear patients on aspects of disclosure and information about at despondency of the patient are the most frequent life-limiting illnesses. Background: Working as an occupational therapist reasons that justify the concealment in both groups. Methods: Questionnaire (19 items, some subdivided) with palliative patients gives many complex administered to 152 patients with various advanced meetings/situations. As an occupational therapist we try neoplastic diseases. to enable better flow in the daily living. In occupational PE 2.S412 Results: Recalling their first disclosure, 51% of patients therapy we have many models of practice. One model described the situation as “sensitive”, 26% as is the Kawa model that aroused from the need of an Improving feasibility of clinical trials in “somewhat sensitive” and 22% as “insensitive”. 59% alternative framework in Asia with their cultural palliative care: A proposed model could chose who was present, every 7th situation perspective. The Kawa model is a relatively young and occurred with other patients in the room. When asked growing model in other cultures such as ours. Kawa is Hagen N A1, Stiles C2, Brasher P M A3 to give grades for the overall experience with their the Japanese term for “river” and is a metaphor for live 1Alberta Cancer Board and University of Calgary, counterparts (1=best∼”very good”, 6= worst) best flow through time and space. In the river there are Medical Oncology, Calgary, Canada, 2Alberta Cancer experiences were graded with 1or 2 by 87% of patients. inseparable parts such as rocks (life circumstances), Board and University of Calgary, Calgary, Canada, The remaining ∼13% could not recall experiences walls and bottom (environment) and driftwood (assets 3Vancouver Coastal Health Research Institute and graded as “good” or better. Worst experiences were 4 or and liabilities) that determines the river shape and flow. University of British Columbia, Centre for Clinical worse for ∼60% of patients. The use of the word Aim: We need a more comprehensive and holistic Epidemiology and Evaluation, Vancouver, Canada “cancer” was recommended by 82% of patients, the dimension of the inner self and environmental suggestion of talking about “a growth” or “a lump” mapping to meet the actual needs for the palliative Background: Successful conduct of clinical trials in (German: “Geschwür” or “Geschwulst”) because this patients. The aim was to see if the Kawa model could be palliative care has been plagued by low accrual rates, would “sound less threatening” was refuted by 50% of used as a tool to provide this. high attrition of study patients during trials, and patients but at least somewhat endorsed by 30%. The Method: We introduced the Kawa model to the challenges related to managing co-morbidity and other majority of patients (86%) associated a doctor who was patients through verbal and visual instructions. The factors. A range of approaches to evaluate feasibility occasionally humorous with a feeling of hope, while patients where thereafter told to make a drawing of have been used to appraise the practicality of research only 54% associated being “physically touched... to their own river context. The occupational therapist and in a particular area of inquiry. A formal feasibility study, offer comfort” with hope, and for 16% this gesture was the patient where in a constant dialogue during the if appropriately conducted, can provide enormous explicitly “not hopeful”. The interview and the session. insight into the design and conduct of a larger, resulting renewed preoccupation with the subject was Result: This way of using the model was a really ice- definitive clinical trial. regarded as stressful (“belastend”) for 6.5% of patients breaker regarding these sometimes serious and delicate Methods: A MEDLINE search was undertaken using and additional 13.5% somewhat stressful. questions. It clarified the patient’s strengths as well as the MeSH term ´feasibility studies´ linked with the Conclusion: Given the patients grading of their problems and provides a visual context in the process of terms: palliative care; terminal care; and end of life. physician counterparts, there seems to be room for seeking solutions, goals and expected outcomes. Both References within identified articles were also reviewed. improvement in the communication skills of German the occupational therapist and the patient gained a The final 17 articles were synthesized into a feasibility physicians. Preferences of patients are similar to results deeper understanding of the life circumstances through framework and a standardized model to investigate reported from Australia (e.g. Hagerty et al. (2005) JCO the patient’s drawing and telling his/hers own stories. barriers and potential solutions to each. We applied this 23:1278). The minority preference for terms which Conclusion: We believe that the Kawa model is a very framework and model to four trials selected from our “sound less threatening” than “cancer” deserves further suitable tool, theory and procedures that will allow us library of completed studies to provide preliminary study concerning the optimal approach for breaking to gain a deeper insight into the palliative patient’s life validity evidence. bad news. Further data and correlative analyses will be flow in a holistic and client centred way. The Kawa Results: Extensive effort has been expended to identify presented. model also helps the patient to understand what and characterize barriers to successful conduct of occupational therapy can provide. clinical trials in palliative care. Barriers can be broadly categorized into 4 domains: patient-related, PE 2.S409 organizational, logistical, and barriers that are inherent PE 2.S411 to the topic being studied. Based on these barriers, and Psychological risk factors for colorectal cancer? strategies recommended to address them, we developed Influence of the caregiver age in the pact of and tested (a) a framework to help predict the numbers Barak F1, Ostrowsky L2, Kreitler M3, Kreitler S3 silence of patients needed to be assessed in order to achieve a 1

Barzilay MC, Ben Gurion University of the Negev, given study’s accrual targets, as part of (b) a sessions Oncology, Ashkelon, Israel, 2Leumit Health Fund, Elvira de la Morena J E1, de Luis Molero V J1, Ruiz D1, comprehensive model to prospectively investigate Home Care, Ashdod, Israel, 3Sheba MC, Tel Aviv Sánchez J1 feasibility. 1

University, Psychooncology Research Unit, Tel Fundación Instituto San José, Palliative Care Unit, Conclusions: Challenges to successful completion of (Saturday) Hashomer, Israel Madrid, Spain palliative care trials are prevalent and serious. A clear taxonomy to characterize the eligible patient pool, and Poster The attempt to identify personality types tending Aim: The pact of silence is defined as the agreement to a model of approach by which feasibility is toward cancer in general or specific cancers in alter the patient information from relatives, friends or systematically investigated, hold the promise to particular is of long standing. Yet previous studies health professionals, with the aim of concealing the enhance the effectiveness of scarce resources applied to yielded inconclusive findings (e.g., Type C). A set of diagnosis, prognosis or severity of the situation to the palliative and end of life research. studies focused on identifying relevant personality patient who wants know what happens. The aim of our Funding: CIHR Grant PET69772. characteristics of cancer pts has been launched study is to know: improving on former attempts by applying a new - The prevalence of the conspiracy of silence in our psychological methodology grounded in the cognitive PCU. orientation theory and by considering medical - The consistency between the desire to be informed variables. The purpose was to identify personality about the disease as a patient or as a main caregiver.

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 203 Poster sessions (Saturday)

PE 2.S413 attendance was possible, useful information for the Inclusions: Randomised clinical trials of effectiveness research project was obtained. research in patients with advanced incurable doisease. Therapy management decisions by means of F- Conclusion: Given the challenging nature of end of Results: 1621 papers were retrieved but only two 18-FDG PET/CT in patients with recurrent rectal life care research, a pragmatic approach to project yielded information related to trial failure. The cancer design must be considered. This use of observational principle reasons for failure of trials fell largely into the research can provide useful insight into staff decision following categories: Kollar A1, Blumstein C G2, Geretschlaeger A1, Aebersold D1, making at the end of life, but is affected by practicalities 1. Difficulties in patient accrual and attrition Reske S N3, Blumstein N M4 regarding consent. 2. Lines of accountability 1Inselspital, Bern University Hospital, Radiooncology, 3. Study protocol difficulties Bern, Switzerland, 2Ulm, University Hospital, 4. Ethical gatekeeping by health professionals Radiooncology, Ulm, Germany, 3Ulm, University PE 2.S416 5. Lack of enthusiasm for research among health Hospital, Nuclear Medicine, Ulm, Germany, 4University professionals of Bern, Radiooncology, Bern, Switzerland Feasibility study of Transcutaneous Electrical 6. Lack of resources. Nerve Stimulation (TENS) for cancer bone pain Conclusion: Success in future trials requires the Aims: Although the rate of local recurrence after lessons of previous trials to be learnt. A database of multimodality treatment for primary rectal cancer has Bennett M I1, Johnson M2, Brown S3, Searle R D4, Radford research failures and amnesty on such information may decreased considerable since the introduction of total H4, Brown J M3 benefit researchers. mesorectal excision, up to 33% of patients develop a 1Lancaster University, International Observatory on End locoregional relapse. Until now, the role of diagnostic of Life Care, Lancaster, United Kingdom, 2Leeds imaging for routine follow-up remains still ambiguous. Metropolitan University, Centre for Pain Research, PE 2.S418 This study aimed to confirm the benefits of F-18-FDG Leeds, United Kingdom, 3University of Leeds, Clinical PET/CT for evaluation of patients (pts.) with Trials Research Unit, Leeds, United Kingdom, How to explore what people really want to say clinical/CD-suspected recurrence of rectal cancer. 4University of Leeds, Leeds, United Kingdom with an advanced directive Methods: 37 pts. (xm:64.9 y.;8 f, 29 m) underwent CD (MDCT,MR,endoscopy) and whole body contrast Aim: To assess feasibility of conducting phase III trial Becker M1, Jaspers B2, Clemens K E1, Klaschik E1, Radbruch enhanced 4-row helical PET/CT (GE Discovery LS). For of Transcutaneous Electrical Nerve Stimulation (TENS) L3, Voltz R4, Nauck F2 CD diagnosis major criteria (histology,bone in patients with cancer bone pain. 1University of Bonn, Centre for Palliative Medicine, destruction) and minor criteria (progressive soft tissue Methods: Multicentre randomised controlled Malteser Hospital Bonn/Rhein-Sieg, Department mass on repeat MDCT, invasion of organs, typ. crossover design. Eligible patients recruited from Science and Research in Palliative Medicine, Bonn, appearance in EUS) are used, for PET focal FDG-uptake palliative care services received active or placebo TENS Germany, 2University of Goettingen, Palliative (SUVmean > 2.0). Pts. records, tumour specific data, for one hour at the site of pain then crossed over; Medicine, Goettingen, Germany, 3University of Aachen, therapy after primary treatment were collected and median interval between interventions 3 days. Clinic for Palliative Medicine, Aachen, Germany, therapeutical consequences evaluated based on PET/CT Responses assessed at 30 and 60 minutes included 4University of Cologne, Clinic and Policlinic for results compared to decisions based only on CD. numerical (NRS) and verbal (VRS) ratings of pain at rest Palliative Medicine, Cologne, Germany Results: PET/CT highlighted in 59.4% (22/37) ín and on movement, and pain relief. Recruitment, contrast to CD tumour progression. In this subgroup tolerability, adverse events, and effectiveness of Background: Dealing with advance directives (AD) in pts. are classified at time of primary surgery as T3-4 N+. blinding were also evaluated. clinical practice is not free of legal and practical PET/CT detected in 17/22 pts. local recurrence and Results: Twenty-four patients were randomised and 19 problems. Furthermore, there are no empirical data on lymph node involvement ± distant mets., in 22.5% completed both interventions. Five patients withdrew: how adequately a written AD expresses a person’s actual (5/22) PET/CT was the method of choice to select pts. three due to deteriorating performance status, two due preferences for end-of-life care (EoLC). This study for curative treatment. Based to PET/CT results therapy to increased pain (one following active TENS and one developed a mixed method approach to compare the consequences are made: 8/22 pts. received a radiation following placebo TENS). After one hour of TENS and content of ADs and what persons really wanted to therapy, in 14/22 pts. chemotherapy was administered. adjusting for baseline; mean NRS pain score at rest with declare in their AD. In 40.6% (15/37) PET/CT excluded the suspected local active TENS was 2.11, and for placebo TENS was 1.79 Aims: 1. Systematic analysis of congruencies and recurrence/tumor progression, therefore no further (difference=0.32 [95% C.I. -0.79, 1.43]); mean NRS pain incongruencies between ADs and interviews, forming investigations and additional costs have to be score on movement was 2.84 for active TENS and 3.05 the basis for identification of key problem areas in considered. for placebo TENS (difference= -0.19 [-1.28, 0.90]); mean formulating an AD. Conclusions: F-18-FDG PET/CT and MDCT have both NRS scores for pain relief were 52.6 with active TENS 2. Identification of group differences between healthy the potential to directly visualize local and distant and 38.4 with placebo TENS (difference=14.2 [-2.17, (H), chronically ill (CI) and persons receiving palliative relapse of colorectal cancer. Influence of therapeutic 30.57]). Nine patients did not consider that a placebo care (PCP). management decisions in patients with recurrent rectal was used though the remaining ten correctly identified Methods: A semi-structured interview following an cancer based on PET/CT results compared to MDCT are placebo TENS. The intervention was well tolerated in interview guideline was used to elicit actual preferences. on significance. this population. Content analysis of the interviews and of the ADs was Conclusion: Feasibility studies are important in used to compare terms used and values described. palliative care prior to undertaking clinical trials. Our Results: Thirty seven interviews have been performed PE 2.S415 findings suggest that further work is required on (19 H, 17 CI, 1 PCP; 11 male; mean age 63.4 years (55 - recruitment strategies and refining the control arm 70)) with a mean duration of 25:04 (12:31 - 63:10) min. The challenge of end of life care research: before embarking on a phase III trial of TENS in cancer First results of the analysis show congruencies and Reflections on the use of an observational bone pain. Confidence intervals suggest using incongruencies between ADs and interviews. research method movement related pain intensity or pain relief as Incongruencies were mostly found with regard to primary outcome measure is most likely to detect any validity (V), health care proxy (HCP) and personal Latten R1, Williams E M I2, Gambles M1, Ellershaw J E1 benefits of TENS in this context. values (PV). Examples: Statement in the interview that 1Marie Curie Palliative Care Institute, Liverpool, United Funding: Cancer Research UK. the AD contains appointment of HCP (not Kingdom, 2University of Liverpool, Division of Public incorporated); AD contained HCP (statement in the Health, Liverpool, United Kingdom interview: HCP does not know this). Validity: Interview: PE 2.S417 Rejection of certain invasive measures, with the Aim: To develop a suitable research method to exception of emergency situations (AD: general examine hospice staff decision making at the end of Why trials fail in effectiveness research in rejection, no specification for emergencies). PV: Finds it life. palliative care important that family members support each other Method: Performing research in palliative care can be (AD: Does not want any help from family). difficult with practical & ethical challenges. This is Keeley P W1 Conclusions: Due to the adaptation of methods from especially true of end of life care research, where ethical 1Glasgow Royal Infirmary, Palliative Care Team, different disciplines, this first step within the mixed concerns and minimum impact on patient care are Glasgow, United Kingdom method approach seems to be a useful instrument in paramount. While developing a project to study order to explore if ADs truly reflect people’s wishes for hospice staff decision making when recognising the Aim: It is generally acknowledged that research in EoLC. dying phase, a number of taxing methodological palliative care, especially well-conducted controlled This project is funded by German Research Foundation, problems were identified. The greatest challenge was clinical trials, is difficult. The aim of this study was to no. NA 780/1-1 how to balance theoretically ideal method with the collate and highlight the reasons why trials in palliative reality of research in an end of life clinical setting. care fail. Observations, as part of qualitative study can provide Methods: Trials were identified using a broad search PE 2.S419 insight into decision making. However direct strategy from a number of electronic databases: Embase observation of clinical staff when performing care of (1988-2008); Medline (1966-2008) Cinahl (1982- Oral history and photography with patients in dying patients leads to concerns regarding impact on 2008),Cancerlit (1962- 2008) The Cochrane Database of supportive and palliative care

sessions patient care and patient consent. A modified Systematic Reviews 2008 Issue 4. Hand searches of a observation phase was designed, proposing observation number of palliative care journals were also undertaken Winslow M1, Hitchlock K1, Noble B1 of hospice multi-disciplinary team and ward handover (Palliative Medicine, Journal of Pain and Symptom 1University of Sheffield, Academic Unit of Supportive

(Saturday) meetings, where clinical decisions are discussed and Management, Progress in Palliative Care, Journal of Care, Sheffield, United Kingdom communicated amongst staff away from episodes of Palliative Care, Journal of Palliative Medicine) In Poster direct patient care. addition, abstracts from posters and oral presentations Aims: To provide an audio and photographic life story Results: The project was successfully reviewed by local of the European Palliative Care Conference, the service for patients capable of enriching their Research Ethics Committee (REC). The REC required all Research Forum of the European Association of experience whilst receiving palliative care. staff present at observed meetings must consent to Palliative Care, the Palliative Care Congress (UK) and Background: This project is recording life stories and being observed. Overall consent rates were high, the research meetings of the Palliative Care Research engaging in photography with patients to enable their allowing attendance at all MDT meetings during the 6 Society. No restriction was placed on the language of involvement in producing life history as a record for week observation period. Attendance at ward handover the original article. families. Recordings capture and preserve the unique meetings was harder given the changing nature of Exclusions: Evaluations of psychosocial interventions voice of the individual and remembering can reinforce nursing shift patterns, the large number of staff present or assessments of services; treatments which would not identity at a time when life circumstances are rapidly & REC requirement for a minimum period of 24hrs for normally be instituted or delivered by a palliative changing. Life history work can help patients feel staff to decide whether to participate. Where physician. appreciated as people, and help practitioners to

204 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) understand patients more fully and form closer various advantages such as ease of administration, rapid started on pregabalin at the first outpatient visit, 4 relationships. Patients work with a professional onset and patient control. patients (7%) at the 2nd visit and 2 patients (3.5%) at photographer to produce deeply personal images. In 2003 our palliative care team developed the use of the 3rd visit. The chief indication for starting Photographic images are sensitive representations intranasal Fentanyl as standard medication against pregabalin was nerve compression. Pregabalin was also which aim to capture individuality and identity. Oral episodic and severe breathlessness. Usually prescribed for ospteoporosis/osteoathritis, hiccups, history and photographs combine to give ‘a voice, a breathlessness is one of the most frequently reasons for chemotherapy-induced neuropathy, peripheral face and an identity’ to people who, due to their disease unexpected and unwanted hospitalisation at the end of neuropathy and tenesmoid-type pain. Typical starting condition, may find it difficult to communicate their live. Since we use nasal Fentanyl against episodic severe doses were 25mg bd (43%), 50mg bd (43%) and 75mg individuality. breathless almost all of our patients could stay at their bd (14%). A trend towards gentle dose increase over Method: Oral history recordings are created in an home until they died. None had to go into hospital time was seen, with an average dose once established informal session in which the patient is prompted to because of the symptom breathlessness itself! on pregabalin of between 100 and 150mg bd. An initial recall their life story. Reflection on significance and In total about 400 patients have been treated with nasal decrease in opioid dose was observed in a proportion of meaning of events enriches life stories. A copy of the Fentanyl. patients, presumed to be those that had a large recording is made after the interview and given to the It seems that PalliativNetz Osthessen is the only neuropathic component to their pain. At subsequent patient. The recording is the patient´s property and palliative care team using large-scale nasal Fentanyl visits there was a slow rise in opioid dose. Co-analgesic available for research with their consent. Recordings are against breathlessness. We want to present the tastk, usage was also recorded with a trend over time towards stored securely and made available to family and method and recent statistic about our treatment and increased prescribing of NSAIDS, amitryptiline and friends with the patient’s permission. discuss the advantage and riscs of nasal Fentanyl against anti-depressants. 12 of 60patients (20%) stopped Results and conclusion: Outcomes for patients severe breathlessness. pregabalin, most commonly (7patients) due to include raised self-esteem, sense of worth, attaching intolerance (dizziness, tremors/myoclonus). meaning to life experiences, creation of a personal Pregabalin is widely used in our service, with typical family record, and recognition and validation of PE 2.S422 starting doses of 25 or 50mg bd and an average dose experience. Outcomes for clinical practice and research once established of 100 to150mg bd. It is generally well- include better understanding of living with life- Can “steroid switching” improve steroid-induced tolerated; chief side-effects include dizziness and threatening disease, awareness of impact on identity psychosis in an advanced cancer patient? tremors. and lifestyle, raised awareness of experiences of palliative and wider health care, and insight into Okishiro N1, Tanimukai H2, Tsuneto S3, Ito N1 relationships between patient, family and professionals. 1Gratia Hospital, Hospice, Mino, Japan, 2Osaka PE 2.S424 University, Oncology Center, Suita, Japan, 3Osaka University Graduate School of Medicine, Palliative Use of tunneled pleural catheters for treatment PE 2.S420 Medicine, Suita, Japan of malignant pleural effusions

Is the integration of non-scientific literature Aims: To examine the effectiveness of treatment of Cabrera M1, Sales P1, Ribot T1, Lopez M1, Poyato E1 helpful for systematic review on phenomena in steroid-induced psychiatric symptoms by steroid- 1Parc Tauli Hospital, Sabadell, Spain the last days of life? switching. Methods: Case history. Background: Malignant pleural effusion (MPEs) is a Schuler S1, Domeisen F1, Grossenbacher-Gschwend B1, Results: The patient was a 67-years-old man. He had a common complication in advanced malignancy. Eychmueller S1, 7th EU Framework OPCARE9 history of pulmonary emphysema In January of Year X- Aim of the study: Explain our experience using Collaboration 1, he was diagnosed with malignant pleural tunneled pleural catheters (TPCs), in the treatment of 1Cantonal Hospital St. Gallen, Centre for Palliative Care, mesothelioma and admitted to our hospice on August the dyspnea relation with the MPEs. St.Gallen, Switzerland of Year X. On October 20, oral prednisolone (5 mg/day) Methods: This is an observational, descriptive and was started to reduce bronchial secretions and was retrospective study. We have reviewed the medical Question: The identification of phenomena of dosed up to 10 mg/day on December 13. In addition, histories of the patients treated with TPCs from approaching death and its prognostic value are basic for oral prednisolone was switched to intravenous January/06 until May/08. Adults oncologycs patients diagnosing dying. Research during the last days of life betamethasone (2 mg/day) on January 17. No with symptomatic MPE, attended by Oncology Service remains ethically difficult and scientific data for signs psychiatric symptoms had been observed during the and/or Palliative Care Unit. and symptoms for diagnosing dying are consequently period of the prednisolone administration. Results: We have included 18 patients (12 men and 6 rare and questionable. While reviewing the literature On January 20, Year X+1, he began to show women) and 23 insertions procedures. The average age on this purpose within the OPCARE9 collaboration, the disorientation, restlessness and unusual behavior. On is 68.9 years. 50% of the patiens had a lung neoplasm, question was posed if the integration of non- scientific January 24, betamethasone was discontinued because 27.7% of them had a pleural mesothelioma and the rest literature may contribute more information to this of concern about the adverse effects. On the following included diferents types of tumors. No complications in situation. day, intravenous prednisolone (10 mg/day) was begun 47.8% of the insertions procedures. 13% of Methods: German non-scientific literature is screened to replace betamethasone. On February 1, intravenous themdeveloped pneumothorax, accidental removal and by internet search and a random library sample using prednisolone was switched to oral prednisolone (10 infection insertions respectively. After the insertion keywords comparable to the systematic review. The mg/day). On February 2, his expression appeared vital procedure, 2 patients stayed alive less than 10 days , 6 of findings were compared with the results of a pilot again and his speech and behavior became almost them from 10 to 30 days , 3 of them from 30 to 50 days systematic review on signs and symptoms of normal. Subsequently, oral prednisolone was continued and 3 patients more than 50 days. Only 2 patients are approaching death and with results of a first round at the same dose, but no psychiatric symptoms alive by the end of the study, without catheter, and we Delphi process on the same issue. appeared. lost contact with 2 of them during the monitoring. Results: Whereas change in respiration (33%) and Discussion: We reported a case of steroid-induced Conclusions: Dyspnea is the main cause of insertion consciousness (24%), reduced fluid intake (21%) and psychiatric symptoms who was treated by switching catheter in our patients. The insertion of TPC is the other signs (heart rate etc., 20-24%) are the from betamethasone to prednisolone. To our second used technique. Nearly 50% of the insertions predominant signs and symptoms in the literature and knowledge, there were few reports on effectiveness of procedures catheters didn’t develop complications. in the Delphi among professionals, other problems or treatment of steroid-induced psychiatric symptoms by 55% of the patients stayed alive more than 30 days after phenomena are reported in the non- scientific switching from one steroid to the other. the insertion procedure. literature and non-professional Delphi: increase of pain In palliative care, “opioid switching” is frequently In selecting an appropriate intervention, clinicians (28%) and fatigue/ retrieval from life (25%). selected in order to improve the balance between should consider local expertiser, the patient’s clinical Conclusions: Preliminary results of the systematic analgesia and adverse effects. In the same way “steroid status, the type of tumor and disease stage, patients review show a possibly important difference in switching” may improve adverse effects, as seen in this comorbidities, life expectancy, ongoing therapies, and phenomena predicting death and dying between the case. Although treatment of steroid psychosis is dosage the patient’s autonomy in order to make an informed scientific and non- scientific literature. Researchers in reduction or discontinuation of steroid and decision. Palliative Care may miss important information concomitant administration of psychotropics, “steroid especially for the phase of death and dying if during the switching” may serve as a valid alternative treatment. search for “grey literature” non-scientific literature such PE 2.S425 as guides, fiction and documentary films are not reviewed. PE 2.S423 Living with breathlessness: How does it affect the sleep patterns of patients & their caregivers and A retrospective review of the use of pregabalin in how can we help? PE 2.S421 a palliative medicine outpatient department Malik F A1, Gysels M1, Higginson I J1 Nasal Fentanyl for the treatment of severe Waldron D1, Balding L1, Mannion E1, Daniels F1 1Kings College London, Palliative Care, Policy & dyspnoea - The perfect symptom control for 1Galway University Hospital, Dept of Palliative Rehabilitation, London, United Kingdom home-care? Medicine, Galway, Ireland

Background: Breathlessness is a complex & sessions Sitte T1 To review the use of pregabalin in the outpatient distressing symptom that affects the quality of life of 1PalliativNetz Osthessen, Fulda, Germany setting, in particular to record the indication for both patients with advanced disease & their carers but

pregabalin prescribing, the starting and average doses it is unclear how breathlessness is experienced at night (Saturday) Severe breathlessness is a common and distressing prescribed, co-analgesic usage, tolerability and side- and how sleep patterns are affected. symptom in advanced malignant and non-malignant effects. Aim: To explore the experience of sleep in breathless Poster disease. There is good evidence for the systemic use of Retrospective chart review was undertaken for all patients with heart failure or lung cancer and in their opioids to relieve breathlessness but not for the patients attending the Palliative Care OPD in Galway main caregivers. nebulized route. The route of administration and the University Hospitals over one year. The number of Methods: In-depth qualitative interviews were time to onset play an important role in selecting an oupatient attendances was noted, and data recorded conducted with patients and their caregivers as part of a ideal agent. Ideally, any drug used for episodic from each visit. larger study on breathlessness across different settings breathlessness should be easy to use both for patients Of the 160 patients attending outpatients, chart data and conditions. Secondary qualitative analysis of this and relatives with rapid onset giving quick symptom was available from 97 charts. 60 of 97 patients (62%) dataset was performed. Data from the transcripts was relief in any setting and professionals available. were on pregabalin. 39 patients (40%) were already on coded using NVIVO and analysed using the Framework Over recent years nasal administration of drugs has pregabalin at their first recorded outpatient visit. Of the approach. attracted both clinicians and researchers. This route has 58 patients (60%) not on pregabalin, 15 patients (26%) Results: 12 breathless patients & 12 caregivers were

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 205 Poster sessions (Saturday)

included. Most patients experienced sleep disturbances, Aim: Report of long-term use of MNTX in advanced Japan, 4Osaka University, Dep. of Psychiatry, Osaka, which they perceived to be related to symptoms, cancer patients. Japan, 5Osaka University, Dep. of Nursing, Osaka, Japan particularly breathlessness, side effects of medications Methods: Retrospective chart review, based on used for breathlessness, thoughts and external factors telephone follow-up over a >6 month period. Patients Appropriate use of anti-infective drugs is essential in such as noise. Most caregivers had experienced sleep were assessed for previous laxative regimen, concurrent clinical practice. It is important to balance between disturbances at some stage during their caregiving. laxatives, time to laxation post injection, frequency of patient Quality of Life improvements and medical Reasons given for carer sleep disturbance included bowel movements, and adverse events (dizziness, economics. The use of anti-infective drugs on advanced nocturnal ‘vigilance’ & anxiety, previous perceived nausea, cramping) rated on a 0-10 scale (0=no cancer patients has not been well studied in Japan. We ‘poor’ sleep patterns and patient restlessness during the symptom, 10=worst possible symptom). When conducted a retrospective study to understand the night. Few patients or carers had approached healthcare available, constipation scores based on abdominal x-ray present situation of the use of anti-infective drugs for professionals about their sleep problems. However were reported. advanced cancer patients at Osaka University Hospital. many had adapted their lifestyles to cope with sleep Results: A 27 year old male with anaplastic Methods: We investigated all medical records of disturbances. oligoastrocytoma (1) and a 61 year old male with advanced cancer patients who died at Osaka University Discussion: Sleep disturbances affected both metastatic small cell lung carcinoma (2) were treated Hospital during a period between January and December breathless patients and caregivers. Carers’ sleep with MNTX 12 mg sc every 2 days for 6 and 4 months, 2006. We reviewed the medical records for last three experiences shared similarities with those of shift respectively. (1) was treated exclusively on an months before death. workers & new mothers. Few patients or carers had outpatient basis, while (2) started treatment as an Results: A total of 71 out of 111 advanced cancer approached healthcare professionals feeling that sleep outpatient but was later admitted to a hospice. Laxation patients (64%) received anti-infective drugs. There were disturbances were either not worth mentioning or that was achieved in (1) 30 minutes-4 hours and (2) 5 44 males and 27 females. The mean age was 62±14 years. little could be done to help. Healthcare professionals minutes-2 hours, following >80% of injections. They had 326 episodes of infection. The purposes of anti- need to recognize that patients & carers underreport Concurrent laxative regimen decreased in (1) and (2). infective drug use were for the treatments of infections sleep disturbances and target appropriate interventions. Adverse event data is reported for responses in which superimposed on the primary cancer site (38%), not Models of the factors associated with sleep disturbance ratings were obtained: cramping (1) 2-4/10 in 13/15 related to the primary cancer site (15%), compromised & areas for targeting interventions will be displayed. responses and 8/10 in 2/15 responses, (2) 0-2/10 in 6/6 host after chemotherapy or transplant (10%), unknown responses; dizziness (1) 0-2/10 in 14/14 responses, (2) (10%), prevention of infection (4%). Improvement of 0/10 in 8/8 responses; nausea (1) 0-3/10 in 14/14 leukocytosis was achieved by 47.3%, C-reactive protein PE 2.S426 responses, (2) 0/10 in 6/6 responses. Both (1) and (2) (CRP) was decreased by 42.2% and patients with fevers expressed satisfaction with the effects of MNTX. declined by 12.4%. Artificial hydratation and nutrition at patients Conclusion: Efficacy, tolerability and acceptability Conclusions: In order to evaluate the benefits of anti- with advanced oezofageal cancer were high with long-term use of MNTX for relief of infective drug use in advanced cancer patients, further OIC. studies including the examination of symptomatic Veterovska Miljkovik L1 improvement besides fever as well as cost-benefit 1Gerantology Institute 13 Noemvri, Hospice Sue Ryder, analyses are needed. Skopje, Macedonia, the Former Yugoslav Republic of PE 2.S428

Aims: The effect of the use of artificial hydratation and Prevalence of symptoms and required support PE 2.S430 nutrition at patients with oezofageal cancer in palliative levels (activities of daily living - ADL) of patients stage. under the care of a hospital palliative care Delirium at the end-of-life: A Methods: In 2001-06, total of 10 patients with support team (re)conceptualization along the physical, oezofageal cancer were treated in Sue Ryder Hospice. All psychological, social, and spiritual dimensions of were man, age 52-84 and were former smokers and had Werni-Kourik M1, Seemann H1, Heidegger D1, Hoernlein B2 the human person been using large quantities of alcohol. 4 of them were 1Wilhelminenspital, Hospital Palliative Care Support with placed gastrostome as a way of nutrition, at one we Team, Vienna, Austria, 2Wilhelminenspital, Medical Wright D1, Brajtman S1 initiated placement of gastrostome and at others it was Head Office, Vienna, Austria 1University of Ottawa, School of Nursing, Ottawa, not indicated placement because of advanced MS Canada changes. Aims: In 2006 an interdisciplinary hospital palliative Results: Patients, who were fed through gastrostome, care support team was established at a medical centre Aim: Delirium is common at the end-of-life and has had gained body weight an average one kilogram per with 1092 beds in Vienna. The main goal is to support been shown to cause suffering in palliative care. month. There were improvements of protein status and palliative patients and their families within all Research and practice in end-of-life delirium operate blood results as well as better quality of life. From side departments and to advise doctors and nurses in largely within a symptom management paradigm that effects - at 2 of them there were skin irritations around palliative care and ethical issues. From the beginning emphasizes the biomedical nature of this condition. stoma, which were fast recovered, and there were some documentation was developed to describe details of Palliative care philosophy, however, espouses that physiological moments - patients did not feel the physical, psychological and social needs. In this study problems at the end-of-life be interpreted within a flavour of food. Extension of life at patients with we attempted to ascertain which subjective and holistic view that recognizes the integrated connections gastrostome was on average 9 months. Patients were objective symptoms palliative care patients suffer from between the physical, psychological, social, and gastrostome was not placed, were hydrated intravenous and what their needs are regarding support in their spiritual dimensions of the human person. Therefore, with the application of infusion crystalline solutions daily activities (ADL). the aim of this poster is to present an analysis of and also with amino-acids solutions and human Methods: Between September 2007 and August 2008 delirium that, while affirming a biomedical albumins. As a side effects at all of the patients there 403 patients were asked to describe their symptoms and perspective, extends also into the existential, were appearances of tromboflebitis and obliteration of problems in a standardized questionnaire. The objective phenomenological, and narrative realms of human peripheral vein and need of placement of central vein symptoms were documented by the hospital palliative experience. catheter. On average survival at these patients was 3 care support team. In total twenty nine different Methods: An analysis of literature from a variety of months. subjective and objective symptoms were documented. sources, including medical/health sciences, social Conclusion: Purpose of the artificial hydratation and At the same time the needs of patients in their activities sciences, and English non-fiction, informed the nutrition in palliative stage was to improve the survival, of daily living were evaluated. creation of a concept map that would convey a holistic to prevent intense lose of body weight, to prevent Results: 237 patients were female and 166 male. The understanding of delirium. absorption pneumonia and appearance of kidney median age was 69 (24 - 96). On average palliative care Results: Several concepts emerged from the analysis as insufficiency. The attitudes about the use as a way of patients suffered from eight various symptoms. The relevant to the delirious experience at the end-of-life, the extension of life of terminal ill with oezofageal most common subjective symptoms were including: communication, connection, control, cancer from ethical perspective are different in medical weakness/fatigue (90%), anorexia (72%) and dry mouth dignity, family, life-death transition, nearing death circles and also among the patients ant their families. (57%). Only 31% suffered from physical pain, but 38% awareness, quality of life, suffering, and symptoms. The This is determined by culture and population mentality from dyspnoea. The most common objective final concept map visually depicts linkages between to a great extent. During the process of decision we symptoms were anaemia (72%), cachexia (48%) and each of these concepts and shows how they relate to were managed by cancer advancements, forecasts, renal failure (30%). Thirty nine percent of the patients different dimensions of personhood. Also depicted is an expectations of the patients and their families. were bedridden, further 43% needed help in application of two lenses through which the delirium mobilization. Forty eight percent need help with food experience can be viewed, the lens of ethics, and the intake, ten percent had enteral or parenteral artificial lens of grief and loss. PE 2.S427 nutrition. More than half of the patients (51%) were Conclusion: While a biomedical perspective is crucial incontinent, 4% of the patients had a stoma. For their in order to investigate causes of and develop treatments Subcutaneous Methlynaltrexone (MNTX), a novel personal care 85% needed support. for delirium, complementary frameworks promote an approach to the adjunct management of opioid- Conclusion: Consistent with other studies our results understanding of end-of-life delirium as an individual, induced constipation (OIC) in the advanced indicate that palliative care patients suffer from various subjective, and contextualized phenomenon. Such an cancer patient: Report of long-term treatment in severe symptoms and need specialized treatment. In understanding will undoubtedly prove valuable as we

sessions 2 patients their activities of daily living they need extensive continue to develop ways to work with delirious support. patients and their families in palliative care. Michaud M1, Dutka J1, Watanabe S1 1

(Saturday) Cross Cancer Institute, Symptom Control and Palliative Care, Edmonton, Canada PE 2.S429 PE 2.S431 Poster Background: OIC is a prevalent problem that can Anti-infective drugs use on advanced cancer Prehospital emergency treatment of palliative significantly contribute to symptom distress and patients patients with cardiac arrest decrease quality of life in the advanced cancer patient. MNTX is a peripherally acting opioid- receptor Nakagawa S1, Okamoto Y1, Tsuneto S2, Toya Y1, Goya S2, Wiese C H R1, Graf B M2, Hanekop G G1 antagonist, which has restricted ability to cross the Matsuda Y3, Tanimukai H4, Ono Y5, Eto H1, Yasuda S1, 1University of Goettingen, Anaesthesiology, Goettingen, blood brain barrier and therefore does not appear to Uejima E1 Germany, 2University of Regensburg, Anaesthesiology, affect analgesia or precipitate opioid withdrawal. It has 1Osaka University, Dep. of Hospital Pharmacy Education, Regensburg, Germany been reported to reverse OIC. There is limited reported Osaka, Japan, 2Osaka University, Dep. of Palliative data available on the long-term use of MNTX every 2 Medicine, Osaka, Japan, 3Osaka University, Dep. of Background: Today prehospital emergency medical days in the advanced cancer patient. Anesthesiology and Intensive Care Medicine, Osaka, staff is confronted with an increasing number of

206 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) palliative patients cared for at home in an advanced medical records of patients who died on the unit PE 2.S435 stage of their cancer disease [1]. during a 6 month period, obtaining a detailed dataset Methods: During a period of 24 month we of the current treatment pathways for constipation. Usefulness of perospirone for the prevention of prospectively analysed all emergency medical calls with Data were included from patients constipated on nausea related to opioid administration regard to palliative emergency situations. In the present admission or who became constipated, and who were investigation all cases with unconscious patients were either taking opioids or had them prescribed during Yomiya K1, Narita M2, Kuzumaki N2, Takei D2, Suzuki T2, included. their stay. Fifty eight patient records (totalling 70 Matoba M3 Results: 361 palliative emergency situations could be admissions) complied with the entry criteria and were 1Saitama Cancer Center, Ina-machi, Japan, 2Hoshi detected (2.8% of all emergency medical calls). We examined to investigate prescribing patterns. University, Ebara, Japan, 3National Cancer Center, identified 106 emergency cases related to unconscious The findings from the first stage identified no set Tsukiji, Japan patients (1% of all emergency calls; 29% of all palliative patterns for oral laxative prescribing and found that motivated emergency situations). Cardiac arrest was neither 43% of patients complaining of constipation Background: To prevent opioid-induced nausea, found in 83% of these cases (88 patients). Paramedics nor 41% already taking opioid medication were prochlorperazine is recommended as a first-line drug in started resuscitation in 69% of all cardiac arrest prescribed any laxative medication prior to admission, Japan. However, the use of the dopamine receptor situations (61 patients). Prehospital emergency an inference being that earlier and more effective antagonist has become controversial, because it causes physicians (EP) began resuscitation in eight cases (9% intervention could lead to clinical and economic akathisia and extrapyramidal symptoms (EPS). of all cardiac arrest situations). In 19 cases (22%) no benefits. Perospirone is an antipsychotic, believed to exert an resuscitation was started by the EP. According to a The second stage, a prospective time and motion study antiemetic effect by acting on dopamines, serotonins, „Return of spontaneous circulation“, ten patients (11%) investigated the direct costs associated with each task in and histamine. Perospirone was developed and were resuscitated successfully. A further eighteen the management of constipation calculating these with marketed in Japan in 2001, and has the marked patients were unresponsive due to other causes. respect to staff time and consumable items. Nurses advantages of causing reduced drowsiness, less of Conclusions: In Germany palliative emergency recorded the time taken to perform the administration weight gain, compared with olanzapine and quetiapine. situations could be found in about three percent of all of oral and rectal laxatives, enemas, rectal examination Aim: To compare the usefulness of prochlorperazine emergency contacts [1]. Many patients in an advanced manual evacuation and after bowel clear up. and perospirone as an antiemetic at the start of stage of their cancer disease do not wish to be The total cost of managing constipation in the unit oxycodone administration at 10 mg/day at fixed resuscitated [2]. However, resuscitation is started in an over a six month period was estimated to be £11,059 intervals and to evaluate the antiemetic effect of acute emergency situation mostly due to unawareness (including cost of discussion); the mean cost of perospirone in animal experiments. of the patient´s will. To avoid resuscitation and a managing constipation was £30 per admission (range Methods: A retrospective study was conducted of in- possible lengthening of the dying process advance £21.36-£38.26), with staff time accounting for 85% of and outpatients at our hospital’s Department of directives, like “Do not attempt resuscitation” orders the cost. The data were highly skewed with 71% costing Palliative Care. Medical charts were reviewed for patient seems to be helpful. The integration of Palliative Care £30 or less, but 5% incurring costs in excess of £100 per profiles, the presence or absence of nausea within 1 Teams seems to be necessary to avoid emergency admission. The burden of managing constipation in week and of EPS during the period of antiemetic medical calls. To what extent these results are an this patient group derives more from time spent in administration. In addition, the antiemetic effects of expression of the intensive debate on the topic cannot routine discussion, and defaecation after care than prochlorperazine and perospirone were evaluated in be deduced from our data and is reserved for further from individually time consuming, but infrequently ferrets. investigations. performed procedures. Results: The rate of nausea within 1 week in the [1] Wiese CHR et al. Anaesthesist 2007 This research was sponsored by Wyeth prochlorperazine group was 6.8%, which was not [2] Georges JJ et al. Support Care Cancer 2005 Pharmaceuticals. significantly different from that (5.1%) in the perospirone group. The two groups showed no significant difference either in the presence or absence PE 2.S432 PE 2.S434 of nausea after the oxycodone dose increase or in the oxycodone dose causing nausea. Moreover, Design of a RCT double-blind, placebo, Individualization of pharmacotherapy in prochlorperazine induced EPS within 1 week in all multicenter, with methylphenidate in fatigue in palliative medicine decreases a risk of occurrence patients, and the main symptom was akathisia. Further, advanced cancer patients of adverse drug interactions there was no significant difference in the duration of antiemetic administration. In the animal experiments, Portela M A1, Centeno C1, Cuervo M A2, Urdiroz J1, San Woron J1, Filipczak-Bryniarska I2, Wordliczek J2 pretreatment with perospirone significantly inhibited Miguel M1, Sanz A3 1Jagiellonian University School of Medicine, morphine-induced nausea and vomiting. 1Clínica Universidad de Navarra, Medicina Paliativa, Department of Clinical Pharmacology / University Conclusion: The results suggest the usefulness of Pamplona, Spain, 2Hospital Infanta Cristina, Medicina Centre for Adverse Drug Reactions Monitoring and perospirone in the prevention of nausea at the time of Paliativa, Badajoz, Spain, 3Hospital Universitario Río Investigation / Department of Pain Treatment and opioid therapy introduction. Ortega, Oncología, Valladolid, Spain Palliative Care, Krakow, Poland, 2Jagiellonian University School of Medicine, Department of Pain Treatment and Fatigue (F) is the most prevalent symptom in advanced Palliative Care, Krakow, Poland PE 2.S436 cancer patients, interfering functional capacity, social relations, wellbeing, and quality of life. Introduction: Post-medication adverse actions Evaluation of the clinical effectiveness of Methylphenidate is a central nervous system stimulant constitute a serious problem in pharmacotherapy in physiotherapeutic management of lymphatic that has traditionally been used in cancer patients to palliative medicine. At palliative patients, as a result of oedema in palliative care patients manage depression, opioid-induced sedation, the decreased metabolic effectiveness of a liver and hypoactive delirium due to multiorgan failure, and excretory function of kidneys, as well as in relation to Nieland P1, Klaschik E2, Clemens K E2 cognitive disorder associated with brain tumors. commonly used poly-therapy the risk of post- 1Centre for Palliative Medicine, Malteser Hospital Bonn, Although there is evidence from prospective studies of medication diseases as well as unwanted interaction of Department of Physiotherapy and Rehabilitation, the efficacy of this drug in cancer-related F, the only medications is increasing. Bonn, Germany, 2Centre for Palliative Medicine, one randomized clinical trials gave non-conclusive Patients and methods: In this work we attempted at University of Bonn, Malteser Hospital Bonn, results. In order to define the real efficacy of individualization of pharmacotherapy with 64 elderly Department of Science and Research, Bonn, Germany methylphenidate in this setting, we design a new patients, (median age amounted to 72 years), who had clinical trial comparing methylphenidate and placebo been treated with polypharmacotherapy. With all 64 Aim: Physiotherapy has an important role in the in cancer-related F, assessed both by the numeric verbal patients the post-medication adverse effects appeared as assessment and management of multiple symptoms in scale (NVS) included in ESAS (Edmonton System the result of applied polytherapy, of a very different palliative medicine. The role of the physiotherapist, as Assessment Symptoms) and the FACT-F, that is the clinical image. Analysis of administered an essential member of the multi-disciplinary team in subscale for F of the Functional Assessment of Cancer pharmacotherapy indicated that with 52 patients palliative medicine is one of the keys to successful Therapy (FACT). We will include 92 advanced cancer (81,2%) the adverse effects appeared as an outcome of rehabilitation and management of patients with cancer patients with F ≥ 4/10 (NVS, from 0 to 10) and interaction among simultaneously administered drugs, and non-malignant motoneuron disease such as ALS hemoglobin ≥ 9 g/dl without any cause of F other than and in 6 cases (9,4%) were connected with impairment and palliative care needs. The aim of the present study cancer or therapy from 3 hospitals. Patients will be of the liver functioning and/or kidneys, and in 6 cases was to evaluate the frequency and effect of randomized to methylphenidate or placebo. Doses will (9,4%) cases of oversensitivity reaction to the physiotherapeutic interventions in palliative patients be adapted to response within a range from 10 mg at administered drugs occurred. with lymphatic oedema. morning time and 5 at noon, to 50 mg/day. Assessment Results: As a result of individualization of Methods: In a retrospective study data of the 208 of response will be performed on days +3, +7, +14 and pharmacotherapy, while maintaining effectiveness and patients admitted to our palliative care unit from +21 with ESAS, FACT. Drug-induced adverse events will safety of applied treatment in 36 cases (56,3%) a January 1, 2007 to December 1, 2007 were evaluated. be checked. The primary endpoint is the intensity of F; number of administered drugs has been successfully Demographic and cancer-related data, such as we will consider the treatment as effective if F was reduced by one drug, and in 14 cases (21,9%) two of diagnosis, symptoms, Karnofsky performance status, reduced at last two points in the NVS on day +7. The administered drugs, considered as unnecessary, were effect of physiotherapeutic interventions were

design of the trial is discussed in this communication. discontinued, in 10 cases (15.6%) as many as three documented and compared. Statistics: mean±SD, sessions medications, which in our opinion were used median. unnecessarily, were successfully discontinued. In 4 Results: Of the 208 patients 90 that reported symptom

PE 2.S433 cases (6,2%) where the patients had experienced load due to lymphatic oedema were included; 67 (Saturday) oversensitivity reactions the drugs were substituted (74.4%) had pain, 23 (25.5%) dyspnoea due to The burden of constipation with other brands, obtaining the disappearance of progredient trunk oedema. Mean age 65.5±13.0 years; Poster adverse effects patients had been complaining about. 33 (36.7%) male; Karnofsky Index 50% (30-80%), mean Thompson K J1, Adams A2, Wee B2 Conclusion: Individualization of pharmacotherapy in length of stay 15.6±8.0 days. Number of 1Sir Michael Sobell House Hospice, In-patient Unit palliative care decreases a risk of occurrence of post- physiotherapeutic treatment interventions during the Palliative Care, Oxford, United Kingdom, 2Sir Michael medication adverse effects as well as of detrimental duration of stay was in mean 7.0±5.8. Manual Sobell House Hospice, Palliative Medicine, Oxford, interactions of medicines. lymphatic drainage was well tolerated in 83 (92.2%) United Kingdom patients; 63 of 67 (94.0%) patients showed a clinically relevant improvement in pain, and 17 of 23 (73.9%) in This two stage study evaluated the impact and financial dyspnoea. cost of opioid induced constipation in a specialist Conclusions: The majority of the patients showed a palliative care unit. Stage 1 involved a review of 387 clinically improvement in the intensity of symptoms

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 207 Poster sessions (Saturday)

after manual lymphatic drainage. Adjuvant ischial and buttock ulcers. The prevailing Gram- were E. impaired lung function, anxiety and respiratory distress physiotherapeutic interventions for symptom coli (12%) and P. mirabilis (14%). they require special attention. In addition they are management are an essential part in end-of-life care of Assessment after 4 weeks in 43 pts shown a sign. often malnourished because of their increased palliative patients. reduction in the number of bacterial species. In all pts respiratory working load. S. aureus and S. epidermidis were eradicated. In 3 pts E. The evaluation of special needs of this group of patients faecalis persisted. Gram- bacteria were also eradicated, will be the aim of a prospective study. PE 2.S437 but in one patient E. coli persisted. None of the pts Conclusion: Only 18,1% of palliative care patients developed any clinical signs of infection. suffer from non malignant disease. Especially COPD How good is our guess? Contrasting views of Conclusion: These preliminary findings suggest that patients are an increasing challenge for palliative care factors influencing decision on Octenisept may be an effective and can play a positive units as they require special attention due to their cardiopulmonary resuscitation in palliative care role in the treatment of p.ulcers. However, controlled impaired respiratory situation. patients and oncological staff members trials are needed to assess its effect, especially when used in combination with hydrocolloids or other Simanek R1, Requat V1, Hammerl B1, Geissler C1, Geissler modern wound dressings. Octenisept also needs to be PE 2.S441 K1 compared with other products that claim antibacterial 1Hietzing Hospital, Department of Oncology, Vienna, properties on other types of chronic wounds. Fatigue and its potential correlates anemia and Austria depression: Prevalence, changes over time and associations in outpatients with lymphomas, Aim: Discussion about cardiopulmonary resuscitation PE 2.S439 lung, breast, or colorectal cancer receiving (CPR) might be avoided by many physicians in chemotherapy palliative care patients and physicians trend to COPD, metastatic breast cancer and pain - A underestimate patients´ quality of life. We aimed to challenge! Müller-Fröhlich C1, Hantikainen V2, Stoll H3, Denhaerynck find out whether influencing factors on palliative care K1, Spichiger E4 patients´ decision on CPR exist and whether there is Rusch N C1, Gehmacher O1, Höfle G1 1Institute of Nursing Science, University Basel, Basel, accordance with the employees´ estimation. 1LKH Hohenems, Palliative Care Unit, Hohenems, Switzerland, 2Inselspital, University Hospital, Bern, Methods: Patients from our Palliative Care Unit Austria Switzerland, 3University Hospital, Basel, Switzerland, underwent a structured interview. Attitudes regarding 4Institute of Nursing Science, University Basel; decline of CPR were asked, as well as risk factors (RFs), Introduction: Although the majority of palliative care Inselspital University Hospital, Bern, Switzerland which were assumed to influence this decision. patients suffer from cancer, patients with non Employees from our Department, who were unaware of malignant diseases also require palliation of their Aims: Describe the results evaluated these RFs and estimated them symptoms. 1) prevalence of fatigue, other anemia-related regarding their impact on the patients´ decision. Method: We present the case of a 58 year old woman symptoms, and depression, Employees´ answers were reviewed with respect to the with breast cancer and extensive bone metastasis who 2) changes of symptoms over three months, patients´ answers. For statistical analysis Chi-square was admitted for alleviation of pain. Beside her 3) associations between fatigue, anemia, depression, tests was applied. malignancy she suffered from COPD grade IV, with concurrent symptoms, clinical and demographic Results: From 01/2002 until 01/2006 288 patients (168 global respiratory insufficiency and BIPAP home variables in outpatients with lymphomas, lung, breast, female/ 120 male, mean age 72yrs.) were enrolled. 130 ventilation. or colorectal cancer receiving chemotherapy in a Swiss patients (45.1%) refused CPR, regarding the RFs, there After opiate rotation and broad coanalgetic therapy the oncology clinic. were no statistically significant differences between pain decreased from 9-3 on the VAS scale. Methods: Prospective study; data were collected at start patients who refused CPR and patients who did not. Due to respiratory distress and anxiety we startet with of chemotherapy (T1), one week prior to the third (T2) However, there was a trend towards dyspnoe [22% vs. low dose benzodiazepines. The patient developed a live and fourth (T3) cycle. The convenience sample 13.6%, odds ratio: 1.79, 95% confidence interval: 0.96- threatening respiratory failure with pCO2 levels of included adults starting chemotherapy irrespective of 3.34]. 70mmHg. Although a ventilation therapy was strictly stage of disease, expected to survive over three months. Employees overestimated the prevalence (prev.) of most rejected by the patient at this time a mask ventilation Symptoms were measured with the Fatigue and Anemia of the RFs [(prev. (%) in employees vs. prev. (%) in with her own BIPAP maschine was started . After Additional Concerns Scales of the Functional patients who refused CPR, p-value (p)): age: 72.5 vs. normalisation of blood gases the woman articulated, Assessment of Chronic Illness Therapy Measurement 50.8, p: 0.02; pain: 77.1 vs. 40.9, p: < 0.01; nausea 46.7 that it was her clear intention ro receive live prolonging System, the Hospital Anxiety and Depression Scale, and vs. 18.8, p: < 0.01; dyspnoea 63.6 vs. 22.0, p: < 0.01; treatment, assisted ventilation and resusciation at any the Memorial Symptom Assessment Scale. Data were immobility 59.5 vs. 28.2, p: < 0.01; physical limitation time. analysed using descriptive statistics, Pearson correlation 78.7 vs. 68.4, p: 0.25; cognitive limitation 94.3 vs. 64.3, Discussion: COPD patients require special experience coefficients, multiple regression and, for longitudinal p: < 0.01] and underestimated the impact of weakness, due to their impaired respiratory capacity, anxiety and data, random-intercept regression. living alone and need for help at personal hygiene repeated episodes of severe dyspnoea. Statements under Results: At T1, T2 and T3, 77 respectively 58 and 53 [54.8 vs. 78.0, p: < 0.01; 39.4 vs. 73.9, p: < 0.01 and 20.0 raised pCO2 levels should not be misinterpreted as the patients participated. At T1, patients indicated the vs. 54.0, p: < 0.01]. true intention of the patient. This case demonstrates following scores (mean ± SD; possible range): fatigue Conclusions: We detect no RFs on palliative care how important it is to discuss questions concerning life 36.3 ± 12.4 (0-52), anemia additional concerns 20.6 ± patients´ decision on CPR. Apart from appraisal of prolonging procedures and resuscitation in advanve. 4.7 (0-28), depression 5.0 ± 4.0 (0-21), anxiety 5.6 ± 3.8 physical limitation, there was no accordance with the Conclusion: COPD patients are an increasing (0-21). Anemia (Hb < 12 g/dL) was present in 39% at T2 employees´ estimation. challenge for palliative care units. They require special and 49% at T3. At T2 and T3, fatigue and other anemia- skills and attention due to their impaired respiratory related symptoms had increased. Fatigue varied greatly situation. within and among patients; patients with higher PE 2.S438 depression scores reported more fatigue. Performance status and depression explained 60% of the variance in The effect of octenisept and hydrocolloid PE 2.S440 fatigue at T2. dressings on bacterial flora in pressure ulcers of Conclusions: Fatigue varied widely but was already patients with advanced cancer How common is COPD among palliative care common at the start of and increased during patients? A retrospective survey chemotherapy, with depression as predictor. Thus, a Sopata M1, Ciupinska M2, Glowacka A3, Muszynski Z2, systematic assessment of both symptoms seems Tomaszewska E4 Rusch N C1, Gehmacher O1, Höfle G1 required, followed by individual care plans that include 1Chair and Department of Palliative Medicine, 1LKH Hohenems, Palliative Care Unit, Hohenems, adequate causal and symptomatic treatments. Funding University of Medicine, Poznan, Poland, 2Unit of Austria was mainly provided by the Swiss Cancer League. Pharmaceutical Bacteriology, University of Medicine, Poznan, Poland, 3Head Nurse, Palliative Care Ward, Introduction: Most patients who are admitted to Department of Palliative Medicine, University of palliative care units suffer from cancer, but there is an PE 2.S443 Medicine, Poznan, Poland, 4Vice-head Nurse, Palliative increasing number of cases with non malignant Care Ward, University of Medicine, Poznan, Poland diseases like end stage CCF, COPD or renal failure. Symptoms and quality of life: A cross-sectional, Method: We retrospectiively evaluated all admissions descriptive, correlation study, evaluating the Introduction: We present a small pilot study assessing to our palliative care unit (10 beds) during the period relationship between symptoms and quality of the effect of Octenisept used with hydrocolloids on the from April 2007 till March 2008. Patients were divided life in cancer patients on opioids bacterial flora and clinical changes of pressure ulcers in into malignant and non-malignant disease. A special patients with advanced cancer. focus was put on the group of COPD patients. Zoëga S1, Gunnarsdottir S1, Sigurdardottir V2, Fridriksdottir Method: During 2006/07 we recruited 45 pts with From 166 patients, 136 cases (81,9%) had a malignant N1 advanced cancer and p. ulcers into the study. At disease, 30 patients (18,1%) had a non malignant illness 1Landspitali University Hospital, Reykjavik, Iceland, baseline and at the end of the 4-week study period we like chronic pain syndrome (13 pat.) or cirrhosis of the 2Landspitali University Hospital, Kopavogur, Iceland

sessions assessed ulcer: % of necrotic, granulation tissue and liver (6 pat.) Only 4 patients ( 2,4%) had COPD without exudate, oedema and/or erythema of the surrounding malignant disease. 11 tumor patients had malignancy The goal of this study, which was a part of a larger skin; undermining/pockets, pain, microbiological and COPD. international study, the European Pharmacogenetic

(Saturday) samples from wound were swabbed after dressing In addition we looked at the number of patients who Opioid Study (EPOS), was to assess the symptomatology removal. An Octenisept-soaked compress was then required inhalation therapy with steroids and ?2- of cancer patients on opioids and to explore the Poster applied for 1 min, after which it was removed. Next, sympathomimetics: 47 patients (28,3%) needed an relationship between symptoms and quality of life hydrocolloid dressings (Granuflex, ConvaTec) were inhalation therapy, but only 15 patients (9,5%) had a (QOL). applied. The same nurse team performed the dressing diagnosed COPD. Most of those patients, who need an The research design was descriptive, cross-sectional, and changes in sterile conditions. Swabs were incubated for inhalation-therapy also had nicotin abusus in their correlational. The variables were symptoms and a 24-48 hours at 37°C and inoculated by isolation history and suffered from a bronchial carcinoma (15 global health/QOL score. Descriptive statistics were method onto media enriched with 5% sheep blood and pat.) or pulmonary metastasis (4 pat.). used to describe the symptomatology and QOL score onto selective-differentiating media. Discussion: Patients with non-malignant disease are and inferential statistics were used to test the difference Results: Baseline assessment: All of the wounds still a minority. Although their prognosis is poor the are between variables Multiple linear regression was used to contained both Gram+ and Gram- bacterial strains. E. often admitted to acute medical wards. model the association between variables. Participants faecalis was the most frequently isolated organism The diagnosis of COPD is common among lung cancer were 150 cancer patients on opioids, 62 (41%) men and (22%), and was present mainly in sacral, coccygeal, patients, but still underdiagnosed. Due to their 88 (59%) women, all Caucasians. The patients ranged

208 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday) in age from 20-92 years with a mean (SD) age of 64,7 program between January and June 2008 was made. improved and were discharged (p < .0001) but not for (12,7) years. Inclusion criteria: Patients with asthenia equal to or those with worsening health status. Performance status, The mean (SD) number of symptoms in the past 24 greater than 6, valued by professionals with a visual age, depression, other anemia related symptoms, and hours was 6,2 (2,5), and 9,0 (3,3) in the past week. The analogic scale (VAS 0-10). the number of concurrent symptoms explained 64% of most common symptoms were fatigue, pain, and Variables to study: the variance in fatigue at T1. weakness. Mean (SD) symptom severity was 0,7 (0,4) in • Analytical data of the patient: hemoglobin, albumin / Conclusions: Fatigue was common but varied widely the past 24 hours and 0,9 (0,5) in the past week on a protein and transaminase as markers of anemia, in these hospitalized patients. Thus, a systematic scale from 0-3. Gender and concurrent diseases were malnutrition and hepatic failure respectively. assessment at admission seems required, followed by not related to number of symptoms, symptom severity • Use of opioids, antihistamine drugs, antiemetic care plans that are adjusted to individual patient or QOL, but increased age was associated with fewer drugs, benzodiazepines and neuroleptics. situations and include causal and symptomatic symptoms and less symptom severity, although age The data were analyzed by frequency distribution. treatments if adequate. difference was not found for global health/QOL score. Results: 86 medical files were reviewed. 55 patients Funding was mainly provided by the Swiss Cancer Adjusted for age and gender, number of symptoms (62.5%) had asthenia. 29 (52.7%) were with opioids, 4 League. explained 25,8% of the variance in global health/QOL. (7.2%) antihistamines drugs, 17 (30.9%) antiemetics Also adjusting for age and gender, pain, fatigue, drugs, 34 (61.8%) benzoiacepines and 10 (18.2%) insomnia, and depression explained 33,6% of the neuroleptics. The data are represented in the table1. PE 2.S447 variance in global health/QOL. Table 1. Number of patients with ≥ 6 asthenia and its The findings in this study are similar to what has been relation to the consumption of some drugs and Topical application of a beclometasone aerosol reported elsewhere. Number of symptoms and the analytical data. inhaler for the treatment of peristomal individual symptoms of pain and notably fatigue were inflammation associated with diminished QOL. Surprisingly VAS 6 7 8 9 10 insomnia and depression did not add significantly to Asthenia Boland J1, Brooks D1 1 the regression model. These results indicate that QOL Number Opioids 8 8 7 4 2 University of Sheffield, Academic Unit of Supportive of cancer patients may be improved by assessing and of (61%) (47,05%) (38,8%) (100%) (66,6%) Care, Sheffield, United Kingdom treating cancer related symptoms. patients Bowel stoma formation is a common procedure as part Antihistamine 1 1 1 1 of either palliation or cure for a range of intra PE 2.S444 (7,6%) (5,88%) (5,55%) (33,3%) abdominal or pelvic malignancies. Occasionally Antiemetic 3 4 5 3 2 inflammation can occur around the stoma site leading Domiciliary intravenous continuous drug (23%) (23,52%) (27,7%) (75%) (66,6%) to discomfort and poor adhesion of the stoma bag. infusions in the management of advanced Simple measures can reduce this, such as regular Benzodiacepine 6 11 10 4 1 chronic heart failure in elderly population cleaning with gentle drying and barrier film sprays, for (46,15%) (64,70%) (55,5%) (100%) (33,3%) example, cavilon. Villegas E1, Torres A2, Camprecios M3, Freixa R3, Altes J1 Neuroleptic 1 1 8 3 We describe two cases of stoma site inflammation 1Hospital Dos de Maig, Internal Medicine, Barcelona, (7,6%) (5,88%) (44,4%) (100%) which did not respond to basic measures of gentle 2 Spain, Hospital Dos de Maig, Hospital at Home, Hb 7 2 6 1 cleansing and barrier film sprays. This resulted in a 3 Barcelona, Spain, Hospital Dos de Maig, Cardiology, (53,8%) (11,76%) (33,3%) (25%) cycle of inflammation (pain, pruritis with excoriation) Barcelona, Spain with decreased stoma bag adhesiveness and faecal Prot-AL 4 2 1 leaking further increasing the inflammation. In both Introduction: End-stage chronic heart failure (ESCHF) (30,7%) (11,11%) (25%) situations a beclometasone steroid aerosol inhaler was is very common in the elderly population, and often Bt/Trans 2 1 1 2 sprayed onto the inflamed skin surrounding the stoma requires multiple hospitalizations for acute (15,2%) (5,88%) (5,55%) (50%) site. Within a few days the inflammation had settled decompensations, with risk for nosocomial Sample 13 17 18 4 3 with improvement of symptoms and good adhesion of complications and psychological disturbances for (23,63%) (30,90%) (32,72%) (7,27%) (5,45%) the stoma bag. In one case occasional recurrent patients and relatives. Therapeutic management of inflammation was quickly relieved by a repeat course of ESCHF may include intravenous drug perfusions. steroid inhaler application. Usually, these treatments force a hospital admission, Conclusion: Within the sample, 62.5% presented The rationale for using a dermally applied but the existence of a Hospital at Home Unit (HHU) asthenia. Treatment with benzodiazepine is the most corticosteroid is to reduce inflammation without the permits an alternative approach for the management of used by more than 50% of cases, which makes us think compromise of stoma bag adhesion that occurs with these patients. is a factor in relation with the presence of asthenia. creams or lotions. We have shown that a steroid dry Objectives: To analyze the clinical evolution of a series Referring to analytical data, anemia is the most powder aerosol inhaler sprayed topically on the peri- of ESCHF-patients admitted in the HHU for continuous prevalent factor associated with asthenia. stomal skin can be effective for resistant stoma site intravenous treatments at home. inflammation, without compromising the adhesion of Results: 9 patients (5 men and 4 women), which the stoma bag. generated 16 episodes in HHU. Mean age was 84 years PE 2.S446 We recommend controlled trials of steroid inhalers in (range 76-90), and all maintained a good cognitive situations needing a topical steroid to reduce status at admission. They came from the Heart Failure Fatigue and its potential correlates anemia and inflammation when the skin needs to remain dry as to Unit where they were diagnosed of decompensated depression: Prevalence, changes over time and not compromise adhesion of a stoma bag. ESCHF despite an optimized oral treatment. All of them associations in hospitalized patients with Funding for this project was provided by the local had required at least 1 hospitalization in the previous 6 advanced cancer hospital. months (range 1-3). Patients were treated during a mean period of 9 days (range 1-22) with dobutamine Spichiger E1, Müller-Fröhlich C2, Hantikainen V3, Stoll H4, (1), dopamine at pre-beta doses (5), both agents (5), Denhaerynck K2 PE 2.S448 furosemide (4), and morphine (1). 2 patients 1Institute of Nursing Science, University Basel and subsequently received perfusion of morphine than Inselspital University Hospital Bern, Basel, Switzerland, Management of refractory emesis in a patient became necessary because of the lack of response to the 2Institute of Nursing Science, University Basel, Basel, with a carcinoid tumour using Aprepitant - A initial treatment. These last 3 patients died comfortably Switzerland, 3Inselspital University Hospital Bern, Bern, neurokinin-1 receptor antagonist and supported by their relatives. The rest 6 patients Switzerland, 4University Hospital Basel, Basel, improved and were discharged with a complete Switzerland Kyeremateng S1, Maden S1, Boland J1 satisfaction with the attendance of HHU. They are alive 1University of Sheffield, Academic Unit of Supportive with a mean follow-up of 4 months (range 0.5-14m). Aims: Describe Care, Sheffield, United Kingdom No adverse events were related to the treatments. 1) prevalence of fatigue, other anemia-related Conclusion: Administration of continuous symptoms, and depression, Carcinoid tumours originate from the intravenous drugs at home in some ESCHF-patients is 2) changes of symptoms over ten days, enterochromaffin cells in the neuroendocrine system. safe and permits an alternative to the conventional 3) associations between fatigue, anemia, depression, They secrete a large number of biologically active hospitalization, appreciated by patients and relatives. concurrent symptoms, clinical and demographic amines and peptides, including serotonin, bradykinin, variables in patients with advanced cancer admitted to tachykinins (substance P and neuropeptide K), two Swiss tertiary care hospitals. histamine, prostaglandins and catecholamines. These PE 2.S445 Methods: Prospective study; data collection at are thought to be responsible for the symptoms (which admission (T1) and on day six (T2) and ten (T3). The include flushing, diarrhoea and nausea) caused by Asthenia intensity and factors related convenience sample included adults admitted because these tumours. (consumption of some drugs, anemia, of new and/or worsening symptoms, or general The two main mediators secreted by these tumours malnutrition and hepatic failure) deterioration of health status, or any complications. which cause emesis are serotonin and substance P (SP).

Symptoms were measured with the Fatigue and Anemia Serotonin is a 5- hydroxytryptamine (5HT) receptor sessions Miranda J M G1, Marquéz R P1, Martinez E P1, Cintas R Y1, Additional Concerns Scales of the Functional agonist and SP activates the neurokinin 1 (NK 1) Belmonte F J1 Assessment of Chronic Illness Therapy Measurement receptor. The setrons, including ondansetron and 1

Extremaduran Health Service, Palliative Care Team, System, the Hospital Anxiety and Depression Scale, and granisetron, which block the 5HT3 receptor may only (Saturday) Zafra, Spain the Memorial Symptom Assessment Scale. Data were be partially effective for emesis in this condition. analysed using descriptive statistics, multiple regression Aprepitant, a NK 1 receptor antagonist, has been shown Poster Background: Asthenia is one of the most prevalent and, for longitudinal data, random-intercept regression. to be effective in reducing delayed nausea and vomiting symptoms in terminally ill patients. It´s a multifactorial Results: At T1, T2 and T3, 103 respectively 76 and 53 in highly emetogenic chemotherapy. It also has a symptom. patients participated. At T1, patients indicated the pathophysiological basis for reducing emesis caused by Aim: Professionals´ palliative care team of Extremadura following scores (mean ± SD; possible range): fatigue carcinoid tumours. We describe a female patient with a (Llerena-Zafra) have designed a study to assess the 23.5 ± 13.4 (0-52), anemia additional concerns 17.5 ± small bowel carcinoid tumour with severe emesis intensity and factors associated with asthenia in 4.6 (0-28), depression 7.8 ±5.3 (0-21), anxiety 6.3 ± 4.5 resistant to the commonly used antiemetics, including connection with medication and analytical data. (0-21). Anemia (Hb < 12 g/dL) was present in 62%. ondansetron, levomepromazine, and metoclopramide. Methods: Retrospective, observational descriptive Fatigue varied greatly within and among patients; She had a dramatic resolution of her symptoms after we study. patients with higher depression scores reported more prescribed a three day course of aprepitant. On A review of the medical files of patients admitted to the fatigue. Over time, fatigue decreased for patients who stopping the aprepitant she remained asymptomatic for

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 209 Poster sessions (Saturday)

10 days, at which point her emesis returned. A further 3 the hospital in July 2007, all randomly selected. symptoms. day trial of aprepitant led to a complete improvement Results: We found 55 patients (57.8%) that had Materials and methods: The medical records of 192 in her symptoms. The aprepitant was continued, as dyspnea in the last 48 hours of life. Of these, 67.92% (n patients who died during the year 2007 amongst the mono-antiemetic therapy, until she died two months = 36) have made use of morphine in the same period, 265 who were followed in home care in that year, in the later, without further recurrence of her nausea or against 32% (n = 17) subjected to other medications. District of Merate (LC). For each patient the symptoms vomiting. We find that 31.5% of patients (n = 30) had dyspnea as present in the last week of life were registered, In view of this patient’s rapid and complete response to the main reason for hospitalization and 70% (n = 21) of calculating the prevalence of: the drug/s used for the aprepitant, without any side effects over the 2 month these have made use of morphine. The pathology more treatment of each symptom, the average daily dosage treatment period, we suggest that this NK1 receptor related to dyspnea, in population that is transferred by for the treatment of each symptom and the eventual antagonist could be used in patients with carcinoid the symptom or in population that showed during efficacy of the treatment itself. induced emesis resistant to traditional therapy. hospitalization, was the cancer of the lung (25% and Results: The most frequent symptoms in the last seven Controlled research is necessary to confirm this novel 32% respectively), followed by cancer of the breast days of our patients were the following: pain (96%), finding. (18% and 22% respectively ). Of the patients who agitation (76.2 %), death-rattle (50%), dyspnoea (20%), Funding provided by local hospital. admitted for dyspnea 53% (n = 16) had survival of 1 to 5 vomiting (20%). From a preliminary analysis of the days and only 7% (n = 2) had higher survival than 10 data, the control of the majority of the symptoms days. appears to have been good, with the therapeutic PE 2.S449 Conclusion: Although dyspnea is a symptom of the strategies adopted. Our work emphasizes that, with an most prevalent and morphine is the drug of choice to expert team, the satisfactory management of multiple A bone of contention: Bisphosphonates in the treat it in patients with advanced cancer, we can see problems in home care is possible. management of metastatic bone disease that 30% of patients whose main reason for hospitalization was dyspnea did not use the same until Whyte G1, Smith J2, Whitfield A3, Thomas H2, Murray C4, death. In our service we carry out research and PE 2.S453 Irvine C5 protocols to improve their approach. 1St. John’s Hopice, Wirral, United Kingdom, 2Countess Levodropropizine in the management of cough of Chester Hospital, Chester, United Kingdom, 3West associated with cancer or non-malignant Lancs, Southport & Formby Palliative Care Services, PE 2.S451 chronic disease - A limited systematic review Southport, United Kingdom, 4St Helens & Knowsley Hospitals NHS Trust, St. Helens, United Kingdom, What is the cancer anorexia cachexia syndrome? Schildmann E K1, Bausewein C2 5Hospice of the Good Shepherd, Chester, United 1Helios Klinikum Berlin-Buch and Campus Buch, Kingdom Walsh D1, Bennani-Baiti N1 Charité - University Medicine Berlin, Department of 1Cleveland Clinic, Harry R. Horvitz Center for Palliative Haematology, Oncology and Tumour Immunology, Aim: Metastatic bone disease is common in cancer Medicine, Dept. of Solid Tumor Oncology, Taussig Berlin, Germany, 2King’s College London, Department patients and can cause substantial morbidity. The use of Cancer Institute, Cleveland, United States of Palliative Care, Policy & Rehabilitation, London, bisphosphonates is recognised to reduce the severity of United Kingdom skeletal complications in some tumour groups and also Aims: There is no unified definition of cachexia, and improve pain control. However the magnitude of even less of the cancer anorexia-cachexia syndrome Aim: Cough associated with cancer or non-malignant benefit, who to treat, when to treat and for how long (CACS). This hinders research efforts. To answer: “What chronic disease is common and can be very distressing. remains unclear. We aimed to explore the prescribing is CACS?”, a historical overview of cachexia descriptions Levodropropizine (L), a peripherally acting drug, has of bisphosphonates across the Merseyside and Cheshire was conducted. Modern definitions were analyzed. A been used to relieve cough in these patients as an Cancer Network (MCCN) in the UK. definition is suggested. alternative to opioids. We therefore aimed to determine Methods: Methods: Web-based searches of key words “cachexia” the efficacy and safety of L in relieving cough 1. A proforma was developed to audit prospectively the or “wasting” in: “books.google.com” (which allowed associated with cancer or non-malignant chronic use of bisphosphonates(excluding treatment for download of old textbooks and search of their content), disease. hypercalcaemia) over a 6 month period in 3 Integrated library online catalog at Cleveland Clinic. Tables of Methods: We searched Medline, Embase and the Clinical Networks (ICN´s) of MCCN including contents and indexes of major relevant textbooks were Cochrane library as well as handsearched relevant community, hospital and hospice settings. searched manually. journals and textbooks to identify randomised 2. A separate questionnaire was distributed to all Discussion: Historical descriptions (from King David controlled trials and quasi-experimental studies specialist palliative care teams via the ICN chairs to to Hippocrates), to later description by many eminent assessing the antitussive effect of L in the above defined establish practice across the MCCN. This focused on physicians reveal: patient population. The quality of identified studies was patient selection criteria,choice of (a) cachexia has been known since ancient times, as a assessed using a modified version of the Centre for bisphosphonate,awareness of adverse effects and severe constitutional manifestation of many illnesses; Reviews and Dissemination (CRD) criteria. assessment of response. These questionnaires were also (b) it has always been distinguished from starvation; Results: The search yielded a total of 35 references. Of sent to oncologists,urologists and haematologists and (c) reduced body weight and anemia are an integral these, 6 were checked in more detail, and finally, 4 these results were analysed separately for comparison. part of the definition in both old and new descriptions; studies published in 3 papers were included. Altogether Results: Preliminary results indicate that zolendronic (d) the inevitable outcome (i.e. death) is long they included 324 patients. Two were randomised acid was the most commonly used bisphosphonate, acknowledged; controlled trials testing L against Dihydrocodeine and particularly in the hospice setting. Differences were also (e) new descriptions have not significantly expanded Moguisteine respectively, and two were non- highlighted in patient selection criteria and there was a the definition; randomised placebo-controlled studies, all with wide variation in the assessment of response. (f) cachexia was a clinical diagnosis of severe important limitations and high risk of bias. L was Conclusion: The audit identified a lack of good emaciation. This has evolved to include body significantly more effective than placebo in reducing information provision for patients receiving compartments analysis; cough frequency and severity, and equally effective as bisphosphonates from palliative care teams. The need (g) Cachexia induces both muscle and fat wasting, Dihydrocodeine or Moguisteine. It was generally well for policies, especially regarding calcium unlike starvation where it is mostly limited to fat. tolerated. Due to the differences between primary supplementation and dental issues is highlighted. Cachexia is dynamic process. Established cancer studies regarding populations, control intervention and There also appeared to be a lack of understanding of cachexia is easily recognized. In contrast early wasting is outcome measures, meta-analysis was impossible. some of the potential risks of treatment amongst the hard to diagnose without established clinical or Conclusion: The evidence for the efficacy of palliative care responses. The need for further research biochemical criteria. Once established, cachexia cannot Levodropropizine for the management of cough in in this area is recognised and the MCCN guidelines and be reversed. Early diagnostic markers are needed. patients associated with cancer or non-malignant standards for the use of bisphosphonates in metastatic Conclusions: Important descriptors that ought to be chronic disease is scarce, and is further limited by the bone disease have been revised following a current part of CACS definition: methodological weaknesses of the primary studies. It review of the literature and the audit findings. (1) “cachexia” refers to the emaciated patient. might be used as an alternative drug for opioid-resistant (2) CACS is not a stage but a process. cough, but further well-designed research is needed to (3) Unlike starvation, CACS does not respond to support this strategy. PE 2.S450 nutritional support. A uniform definition is needed. Use of morphine to control teminal dyspnea in a PE 2.S454 palliative care unit in Brazil PE 2.S452 Palliative sedation in a palliative care unit: Pinto C S1, Burburan S1, Freitas R1, Tutungi M1 Experience and new prospects 1INCa - Instituto Nacional de Câncer, Hospital do Last week of life: Symptoms and treatment of Câncer IV, Rio de Janeiro, Brazil neoplastic patients in home care Barbosa M F1, Pinto C S2, Tutungi M3, Freitas R3, Lanes F S1 1INCa - Instituto Nacional de Câncer, Hospital do Background: The dyspnea is defined as: “Feeling Scaccabarozzi G1, Lombardi F1, Brivio B1, Sesana C1, Isolani Câncer IV, Serviço de Farmácia, Rio de Janeiro, Brazil, E1, Pilotto F1, Dell’Orto C1, Crippa S1, Gilardi M1, Perego M1, 2 sessions uncomfortable in the act of breathing” and is one of INCa - Instituto Nacional de Câncer, Hospital do the most prevalent and devastating symptoms in Pelosi M1, Bonfanti S1 Câncer IV, Ambulatório, Rio de Janeiro, Brazil, 3INCa - patients with advanced cancer, independent of the 1ASL Lecco, Dipartimento della Fragilità- Unità di Cure Instituto Nacional de Câncer, Hospital do Câncer IV,

(Saturday) primary site of the disease. It one of refractory Palliative, Merate, Italy Internação Hospitalar, Rio de Janeiro, Brazil symptoms most commonly associated with the Poster progressive loss in quality of life About 70% of patients The main objective of palliative care is the highest Introduction: The palliative sedation is the most with advanced cancer present some degree of dyspnea quality of life possible throughout the entire period of appropriate treatment for patients with refractory in the last six weeks of life. The Morphine is one of the assistance to the patient, and in particular during the symptoms of a disease in progress. It is a way to provide best medicines for the treatment of terminal dyspnea, it last days of life when the physical symptoms, often comfort to patients and their families, without, reduces the discomfort and increases the tolerance to multiple, can increase in intensity, proving more however precipitate death (principle of double effect). hypoxia and hypercapnia. difficult to treat and extremely invalidating for the Objective: To evaluate the profile of patients Objectives: To evaluate the incidence of dyspnea in patient. The aim of this study was to evaluate the undergoing Palliative Sedation in the year 2007, hospitalization patients, the most prevalent disease and predominance of symptoms in the last week of life of regarding the frequency and cause of the indication of the use of morphine as medication of choice. patients suffering from cancer in an advanced phase, the procedure, the drugs most used, duration of Materials and methods: Retrospective analysis of followed in home care by our palliative care team, and survival and present new perspectives in technology patient records. Were evaluated 78.9% of 119 deaths in the therapeutic strategy undertaken to treat those and pharmacology.

210 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

Materials and methods: Retrospective analysis of patients diagnosed of MBO. pressure ulcers: 29 with improvement, 5 with records of patients who underwent the palliative Data collection: Structured record including worsening and 20 retained; 25 injured tumor: 4 with sedation during the last admission at our unit in the demographic data, cancer diagnosis, extension status, improvement, 10 with worsening and 11 maintained. year 2007. physic symptoms, level of MBO, blood analysis, In September, the average was 164 patients, 56 with a Results: There were 36 patients in total sedation in the Karnofsky and Barthel index. pressure ulcer: 25 with improvement, 5 with worsening period, with an average of 1.75% per month (in relation Analysis: Univariate analysis was used to examine the and 26 retained; 36 injured tumor: 7 with to the number sedated patients throughout the year). relation between clinical data and probability of no improvement, 11 with worsening and 18 maintained. The most prevalent symptom was dyspnea, followed by spontaneous resolution of MBO. To see improvement or worsening of pressure ulcers delirium. The medicine used for sedation was the Results: 100 MBO episodes were prospectively was evaluate the stage of ulcers healing and their midazolam, followed by a combination of morphine included (MBO prevalence 11%). No resolution of MBO aspect; in tumor wounds was assessed the degree of with midazolam (both in pump infusion). The majority was observed in 58% of cases. In stratified data odor, exudates, size and bleeding. It is emphasized that of patients progressed to death in up to 48h, and that comparing both groups of patients (resolution versus a patient may even contain more than a wound or the maximum survival was 20 days. The symptom with no resolution) no statistic differences were found in ulcer. After evaluating the results, the team discussed the lowest average survival was dyspnea, with an univariate analysis for gender, MBO previous episodes, with the intervention of guidelines from the data average of 1.77 days. During the year 2007, it was found obstruction level, peritoneal carcinomatosis, anemia, obtained, such as: implementation of educational work that only 1 of 36 patients sedated with midazolam hyponatremia, hypoalbuminemia, ascitis, symptom ahead systematic care provided by caregivers/family at presented great difficulty to achieve satisfactory level of severity and hepatic or renal failure. Significant home, change of conduct and clinical therapy for sedation. None of the patients had the sedation statistical differences were observed in (% of no improvement of assistance. reversed. resolution/ Odds ratio/ IC 95%/ p): cognitive failure Conclusions: With this study, we can say that the use Conclusion: Currently term use of free and informed (82,6%/ 4,6/1,4-14,9/<0,05); abdominal palpable of indicator is a method that helps to improve the consent to obtain authorization from the patient and tumors (81,0%/3,9/1,2-12,7/<0,05); cachexia quality of care, offers the professional a clear and when it is no longer possible, the family or guardian; (86,4%/6,3/1,7-23,1/<0,05); dehydratation concise way to evaluate their conduct through the from 2008. In 2008, the possibility of introducing the (81,8%/4,2/1,3-13,8/<0,05); previous Karnofsky results, providing a clinical and educational work in a drug propofol to the arsenal in order to determine what index<70% (74,3%/5,6/4,1-32,7/<0,001); previous unified action, where the exchange of information and would be the gold standard for drug concerned Barthel index <70% (80,4/7,7/3,1-19,1/<0,001). views make the work more efficient and secure. Palliative sedation, but Midazolam remained as the Discussion: In this study, probability of spontaneous standard, according to the technical difficulties of use resolution of MBO is 42%. The analysis demonstrated of propofol for long periods. Studied, even if the that cognitive failure, cachexia, clinical dehydratation, PE 2.S459 adoption of the BIS as a tool for assessing the level of and poor performance and functional status are sedation. predictive factors for no spontaneous resolution of A protocol for the control of agitation MBO. Ferraz Gonçalves J A1, Almeida A1, Teixeira S1, Pereira S1, PE 2.S455 Edra N1 PE 2.S457 1Portuguese Institute of Oncology, Palliative Care Unit, Pressure ulcers‘ prevention and care: Nurses‘ Porto, Portugal knowledge Prevalence and characteristics of lower extremity edema in advanced cancer patients Aim: Agitation occurs frequently in palliative care and Demskyte J1, Krasovskaja A2, Laurs L3 is one of the more important reasons for sedation. 1Kaunas University of Medicine, Nursing and Care Mirhosseini M1, de Kock I H1 Agitation can have many causes and can be reversible, Department, Kaunas, Lithuania, 2Kaunas University of 1University of Alberta, Department of Oncology / but when it occurs can be very distressing for all Medicine, Kaunas, Lithuania, 3Kaunas Medical Division of Palliative Care Medicine, Edmonton, involved such as family, health professionals and University Hospital, Kaunas, Lithuania Canada patients and can even put them in danger. Therefore, it is mandatory to control the situation in an effective Aim of the research: To assess nurses‘knowledge in Aim: Leg oedema is a commonly encountered and quick way, but with a minimum of risk to the pressure ulcers‘prevention. symptom in our clinical palliative care practice which patients. Objectives: significantly impacts patients’ physical function, Methods: With this aim in mind a protocol for - To analyze nurses’ knowledge in pressure ulcers‘ leading to further morbidity, anxiety and feelings of agitation control was developed; the protocol was prevention. being a burden. Review of the literature provides little activated in 18/06/2007, which was the data of the - To assess nurses’ knowledge in care of patient with specific data on the significance of leg edema in the opening of our palliative care unit (PCU). pressure ulcers. advanced cancer population. As part of planning a Protocol for the control of agitation: - To compare nurses’ knowledge in pressure ulcers‘ prospective trial of subcutaneous drainage of leg - Haloperidol - 5mg IM + Midazolam - 5 mg IM prevention and care of patients with pressure ulcers oedema, we investigated the prevalence and clinical 30 minutes later, if the situation was not controlled: among nurses. aspects of this symptom in the advanced cancer - Haloperidol - 2 mg SC + Midazolam - 5 mg SC; up to 2 Respondents: Nurses, working with patients with population. doses (30 minutes interval) pressure ulcers or risk of them. 76 nurses were Method: We conducted a chart review of all patients 30 minutes later, if the situation was not controlled: investigated. Research was done during January- admitted to a tertiary palliative care unit and a hospice - Midazolam 5 mg SC every hour till the control of the February of 2008 year in 3 Kaunas hospitals by unit between January 1 and December 31, 2006. We situation. anonymous questionnaire test, created by authors. collected data describing the prevalence and clinical If the agitations recurs: Results: Mostly of nurses know about reasons of presentation of lower leg edema when documented. We - Less than 2 hours after control: resume the protocol pressure ulcers (82 percent), importance of prevention also explored the use of different therapeutic from the interruption point. of pressure ulcers, proper means for prevention; can modalities. - More than 2 hours later: restart the protocol from the recognize early signs of pressure ulcers (72 percent). Results: This study confirms that this symptom is beginning. Nurses know what actions are needed in care of common in this population. We describe the Results: Until 15/09/2008, 142 patients were admitted pressure ulcers and what means quicken healing of complications associated with leg oedema. We and the protocol was used in 11 (8%). 7 (64%) were pressure ulcer (removal of pressure into ulcer, change of comment on the under-utilization of the available males and 4 (36%) females and median age was 68 position, appropriate skin care). Nurses sometimes use therapeutic options. years (56 to 85 years). The protocol was used correctly inappropriate (old) means for prevention of pressure Conclusion: The collected data will contribute to 42 times, from 1 to 12 times in each patient, median 3 ulcers. Pressure ulcers’ risk scales are not used regularly. improvement of evidence-based clinical Palliative Care times. The interval between the first dose and the Nurses in nursing hospitals use risk scales for pressure practice, while drawing attention to this often under- control of agitation was from 5 to 75 minutes, median ulcers more than nurses in university hospital (41,7 appreciated symptom. 22.5 minutes. 69% were controlled in ≤ 30 minutes and percent and 2,5 percent). 95% in ≤ 60 minutes. Conclusion: Nurses’ knowledge in pressure ulcers’ 33 (79%) of the agitation episodes were controlled with prevention and care is insufficient. PE 2.S458 only the first dose of the protocol, 9 (21%) needed a second dose and only 1 (2%) needed the third. There Clinical indicators of a pressure ulcer and wound were not any treatment complications. PE 2.S456 tumor of the home care service in a palliative Conclusion: The protocol for the control of agitation care unit developed in our PCU is very effective as demonstrated Inoperable malignant bowel obstruction in by the quick control of the situation, usually with only advance cancer patients: Predictive factors of no Silva S P1, Cerqueira L2, Souza V L B1 one dose, and the lack of complications. spontaneous resolution 1INCa - Instituto Nacional de Câncer, Hospital do Câncer IV, Divisão de Enfermagem, Rio de Janeiro, Tuca A1, Garzon C1, Codorniu N1, Perez-Martin X2 Brazil, 2INCa - Instituto Nacional de Câncer, Hospital do PE 2.S460 1Institut Català d’Oncologia, Palliative Care, Câncer IV, Rio de Janeiro, Brazil 2

L’Hospitalet, Barcelona, Spain, Institut Català Recent clinical trials in cancer cachexia: sessions d’Oncologia, Research Unit, L’Hospitalet, Barcelona, Objective: To present the indicators of a pressure ulcer Systematic literature review on inclusion Spain and wound tumor of service home care in palliative criteria, endpoints and standard anti-cachexia

care. interventions (Saturday) Introduction: Malignant bowel obstruction (MBO) is Methods: For data collection has created a worksheet a common complication in advanced cancer patients to a pressure ulcer and wound tumor that is composed Omlin A1, Oberholzer R1, Strasser F1, Work Associated with Poster (3-15%). Conservative medical treatment can achieved of: identification, date of admission, date of the first the European Palliative Care Research Collaborative 80% of symptom control and spontaneous resolution is assessment, location, staging, exudate, bleeding, odor, 1Oncological Palliative Care Medicine, Oncology & observed in 30% of cases. Predictive factors of treatment, evolution. From that instrument, the results Palliative Care Center, Cantonal Hospital St.Gallen, spontaneous resolution of MBO are not still known. are monthly quantified. Data were collected from July St.Gallen, Switzerland Objective: To identify predictive factors of no to September 2008. spontaneous resolution of inoperable MBO. Results and discussion: The patients average in July Aim: The classification of cancer cachexia (CC) is Method: Cross-over study. was 168, 39 with pressure ulcers: 19 with improvement evolving towards distinguishable, mechanism- Care setting: Palliative Care Support Team of a ulcers, 3 with worsening and 17 retained; 27 injured associated cachexia domains, concepts of standard basic University Hospital. tumor: 5 showing improvement, 5 kept worsening and cachexia interventions are maturing, and endpoints for Inclusion criteria: Prospective inclusion of all cancer 17. In August, the average was 181 patients, 54 with clinical trials beyond mere body weight changes are

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 211 Poster sessions (Saturday)

demanded. To systematically review current CC clinical Care Unit, Lleida, Spain, 3Hospital Arnau de Vilanova, PE 2.S464 trial designs. Palliative Care Unit, Lleida, Spain, 4Universitat de Methods: Medical databases (PubMed, Cochrane, Lleida, Lleida, Spain, 5Hospital Arnau de Vilanova, Laxatives profile in patients attended by Embase, PsycINFO, Cinahl) were searched with 2 Gestió de Serveis Sanitaris, Lleida, Spain, 6Hospital palliative care units combined search strings (cachexia, cancer), restricted to Arnau de Vilanova, Lleida, Spain English & German, to 15.10.2004 to 15.3.2008 and to Noguera A1, Centeno C2, Silvia L3, Perez R4, Nabal M5 clinical trials; abstracts (2005-2007; ASCO, ESMO, Aim: To analise the relationship between the 1Hospital CC Laguna, Madrid, Spain, 2Clinica MASCC, Cachexia Conferences ) with key words guidelines of gastroprotection and the survival at 30 Universidad de Navarra, Pamplona, Spain, (cachexia, anorexia, weight loss) and handsearch days in a cohort of oncological and palliative patients. 3Observatorio Regional de Cuidados Paliativos de (clinical trials), and clinical trials databases Methods: 201 patients included from february to may Extremadura, Merida, Spain, 4Equipo de Cuidados (www.controlled-trials.com/mrct; 2008. Data studied: age, gender, main diagnosis, Paliativos de Don Benito-Villanueva de la Serena, Coria, www.clinicaltrials.gov; www.who.int/ictrp/) with treatment with gastroprotective agents, NSAIDs, risk Spain, 5Hospital Arnau de Vilanova, Lerida, Spain cachexia and anorexia. Data were extracted by 2 factors for gastric bleeding (age older than 65 years, on investigators. steroids, antiagregants, anticoagulants, previous history Objectives: Results: Of 15 of 363 manuscript citations from of peptic ulcus), follow of the guidelines regarding the 1) to establish laxative regime used by the palliative databanks, 42 of 65 trials from registries, and 20 use of gastroprotection and mortality at 30 days. The care units of our environment abstracts (ASCO 7, ESMO 1, MASCC 7, Cachexia- statistical analysis was carried out in three steps; first, an 2) determine the degree of control of this symptom in conferences 5), 59 trials were included after exclusion univariant analysis was performed between all the our population. of duplicates. In a large minority of trials, inclusion variables regarding mortality at 30 days. Second, the Population and methods: A descriptive, multicenter, criteria were restricted to selected tumor types, but binary logistic regression. Third, patients were classified cross-sectional study through a questionnaire in two without stating reasons (e.g., practical accrual facts, according to the CHAIDS tree method. Statistical cuts (02/10/07 and 23/01/08). Were discussed, among registration arguments, expected cachexia subtypes), 2 significance was assumed if p<0.0500. other things, the following variables: intestinal rate trials limited inclusion to cachexia subtypes Results: With the univariant analysis, a significant (number of bowel movements per week), constipation (hypercatabolic [pulse rate], elevated CRP). Most, but relationship was found between being consedered as perceived by the patient, opioid consumption and not all, trials defined 1 primary endpoint, mostly palliative (OR: 12,2, IC 95%: 5,9-25,0), treatment with laxative treatment. weight, muscle mass, or appetite, and increasingly - but steroids (OR: 2,6, IC 95%: 2,4-4,9), treatment with Results: A total of 283 patients. Their average age 71 still rarely - functional outcomes (e.g., muscle strength, gastroprotective drugs (OR: 3,6, IC 95%: 1,8-6,9), years, 90% cancer diagnosed, 58% more than a month overall physical function [n=4]) and mechanism- NSAIDs with any of the risk factors (OR: 2,4, IC 95%: monitoring by palliative care units. Consume opiates specific variables (CRP [n=1]; GH [n=2]). Few trials 1,6-2,3) and the diagnosis being lung cancer to have the and laxatives 63%. referred specifically to standard basic CC poorest prognosis (OR: 3,8, IC 95%: 1,8-7,8). In the Feel constipated 45% of patients (127/283) and 19% interventions (nutritional support [n=5], physical second steponly three variables were found to be (54/283) performed 2 or less depositions per week. 39% activity interventions [n=2], symptom control standards significant: gastroprotection as a protective factor and (41/106) of patients not taking opioids are constipated [n=6]). the lung cancer and being palliative as poor prognosis and 18% (19/106) of the same conduct depositions 2 or Conclusion: Joint efforts are needed to integrate novel factors. the third step we defined six different groups less per week. With regard to treatment highlights the CC classifications, mechanism-based outcomes, and with different mortalities. disparity of approaches found. Of the patients who best palliative cancer care, into clinical trial designs Conclusion: Taking gastroprotection does not have used laxatives, 14/178 (8%) only continued rectal impacting practice. any significant relationship with mortality ans is treatment (enemas or suppositories), 40 more (24%) related to overtreatment and probably, a more combined oral and rectal treatment. Of the 163 patients advanced satage of the disease. taking oral laxatives, 133 (82%) were taking only a PE 2.S461 laxative, 25 (15%) took two and the rest three or more. Of the total number of patients taking laxatives by Sleep disturbance, performance status, PE 2.S463 mouth 65% took lactulose (74% if we add lactitiol), 14% depression and pain as predictors of fatigue in magnesium, 13% senna and 12% polyethylene glycol . cancer patients Effective treatment with methrotrexat and Only 17/163, 10%, combined an osmotic laxative with dexamethason in Anti-hu negative senna. Mota D D C F1, Pimenta C A M2, Kurita G P3, Caponero R4 paraneoplastic syndrome Conclusions: Opioid consumption is a root cause but 1Sao Paulo Cancer Institute, Clinical Research, Sao not the only one of constipation in palliative care. The Paulo, Brazil, 2Nursing School / University of Sao Paulo, Piribauer M1, Mattukat V1, Kloke M1 lack of consensus in the treatment of constipation Medical-Surgical, Sao Paulo, Brazil, 3Multidisciplinary 1Kliniken-Essen-Mitte, Palliative Care Unit, Essen, could influence their little control. Pain Center Rigshospitalet Copenhagen University Germany Hospital, Copenhagen, Denmark, 4Clinica de Oncologia Médica 9 de Julho, Sao Paulo, Brazil Aims: Paraneoplastic syndroms are very often in cancer PE 2.S465 patients. We describe a woman with bladder cancer Introduction: Early diagnosis and target treatments without finding antibodies (Anti hu and Anti-Ma) with Survey of glycaemia management within a may be achieved through the identification of fatigue cognitive disorder. hospice setting predictors in cancer patients. Methods: A 68 year old woman suffered from bladder Aim: To identify predictors of fatigue in cancer cancer since 2007 with bone metastasis in the entire O’Brien E1, Cawley D1, Waterman D1, Braybrook J1 patients. spine, ilic bone and ribs 6 to 8 on the right side. 1St Ann’s Hospice, Cheadle, United Kingdom Methods: A convenience sample of 586 adult Treatment was started after TURB with local mitomycin outpatients with gastro-intestinal, gynecological, breast, chemotherapy application into the bladder. In order to Background: Diabetes is a significant condition with prostate, respiratory and hematological cancers were relief pain, therapy with morphine was started. considerable impact on patient morbidity and recruited from 4 oncology clinics at Sao Paulo (Brazil), After one month she was admitted to the department of mortality but also on consumption of costs within the from July 2006 to July 2007 (mean age 57±13 years; neurology and neurophysiology due to a delirium. She health economy. Diabetes and its care are not context 61% female; 10±5 years of study). Patients filled out an showed a misjudgement of situation, perception bound and exist in a variety of settings. This resonates Identification Profile, revised-Piper Fatigue Scale (0-10; disorder with hallucinations, she became confused and with palliative care in that the care of a patient is cut score:4), Beck Depression Inventory (0-63; cut suggestibility. guided by clinical need and not condition specific. score:11), and Karnofsky Scale (0-100; cut score:80%), The examination of cerebronspinal fluid reveals a mild Assessment and management of diabetes and its’ Pain scale (0-10 cut off:) and Sleep disturbance scale (0- pleocytosis (11 to 26 white cells), glucose 67 mg/dl and sequalae are central to impeccable holistic care of this 10 cut score:). a slightly elevated protein 53,1 mg/dl. Lactat was in patient group. Results: Fatigue was referred by 32.8% (n=192) of the normal range. A meningiosis carcinomatosa or tumor Aim: To assess the current glycaemic practice within a patients. Logistic regression analyses revealed that Sleep cells from the bladder cancer could not found. The MRI hospice setting. Disturbance (OR:2.6; 95%CI 1.49-4.51), Performance shows neither bleeding, circulatory disturbance nor Method: Retrospective casenote review of inpatients status (OR:2.1; 95%CI 1.22-3.80), Depression (OR: 1.1; metastasis. within a hospice setting within the North West of 95%CI 1.08-1.18) and Pain (OR:1.74; 95%CI 0.99-3.02) Opioidrotation from morphine to fentanyl was done England. predicted fatigue. When the four factors (Sleep and tretment with neurolepics was started. Due to a Results: 35 patients were identified with 38 admission Disturbance, Poor Performance status, Depression and minor resoponce of the treatment, she was admitted to episodes. Patient demographics included age (71 yrs (R Pain) were present in concomitance, the probability the the palliative care unit. The blood test was normal. We 40-86)), length of stay ( 27 days (R 5-86)), outcome patients had fatigue was 55.7%. The concomitance of could not find Anti-hu (ANNA Typ 1), TA and Ma- from admission (discharge 21, death 16, 1 transfer) and three factors (Sleep disturbance, Poor Performance antibodies in the serum. Psychological assessment 82% (n=31) of patients admitted for symptom control. Status and Depression) explained 42.0% of fatigue’s showed limitations in higher cognitive capabilities, e.g. Documentation supported type of diabetes (73%) with prevalence. When none of them were present, the disorientation (time, place), calculation capabilities, only 27% of patients having any reference to previous probability of fatigue occurrence was only 10.3%. delusion and hallucination. The result of 7 with the control. Anticipatory glycaemic planning was only Conclusions: These results indicated that the DemTect® screening instrument supported our documented in 40% of patients despite significant

sessions predictive factors themselves or combined with others diagnosis of dementia. Treatment with dexamethason hyper- and hypoglycaemic episodes (26 in total). are major predictors of fatigue. It was possible to (16 mg per day) and methrotrexat (7,5 mg) weekly. Anticipatory prescribing favoured hyper- (n=18) rather construct a Fatigue Prediction Table which can be easily Within a week of tretment the retesting showed a than hypoglycaemic episodes (n=3) despite the latter

(Saturday) applied in clinical oncology practice. considerable improvement in orientation (time, space), being more frequent (16 vs. 4) definite reduction of delusion and hallucination and Conclusions: Diabetic care consists of assessment of Poster error-free calculating. initial control, ongoing review with changes in PE 2.S462 Conclusion: Only in suspicion of a paraneoplastic medication depending on glycaemic monitoring and syndrom, the combination of methrotrexat and all this facilitated by comprehensive documentation. Gastroprotection and survival at 30 days in a dexamethasone is effective. This survey has highlighted the need for a clinical cohort of oncologic and palliative patients pathway of care for Diabetic patients within a hospice setting. It has also underpinned the importance of Canal Sotelo J1, Fabregat J P2, Nabal M3, Trujillano J4, clinical governance structures existing to ensure Barallat E5, Palomar C6, Jimenez A6 continued improvements in the delivery of patient 1Hospital Universitari Arnau de Vilanova - Gestió de care. Serveis Sanitaris, Palliative Medicine, Lleida, Spain, 2Hospital Universitarios Arnau de Vilanova, Palliative

212 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Poster sessions (Saturday)

PE 2.S466

Subcutaneous metylnatrexone in the treatment of constipation in advanced Ill patients undergoing opioid therapy

Hait B1, Prinz-Rogosch U1, Froehlich H1, Burgard C1 1Katharinen-Hospital Unna, Palliative Care, Unna, Germany

Constipation is one of the most common problems within the group of advanced ill patients who undergo opiod therapy. The aim of our investigation was to study the efficacy of subcutaneous peripheral μ-agonist methylnatrexone at patients of our palliative care unit who developed constipation under opioids. A group of 12 patients was selected. Selecting criteria: advanced disease, opioid therapy since leastwise 1 month, no defecation for 5 or more days despite laxatives and other stimulating activities (such as enemas). 6 patients received Metylnatrexone in addition to conventional methods while the treatment of the other 6 patients was proceeded with common methods only. Metylnatrexone was injected once in dosage of 8 mg (0,4 ml) at the patients with the weight under 65 kg and of 12 mg (0,6 ml) - 65 kg and more. If there was no response after the first injection we repeated the injection once more on the next day after the first injection. In the group who received methylnatrexone 2 patients had defecation within 4 hours after the drug was injected. 1 patient had the bowel movement a day later, 3 hours after the second injection. 3 patients had no defecation despite two injections (on day 1 and 2). In the control group defecation was observed in 1 patient on the day 1 and in 1 patient on the day 2; further two patients had the bowel movement 2 days later under colon irrigation and another two patients had no defecation despite all the conventional procedures. Conclusions: 1. Subcutaneous Metylnatrexone showed its efficacy in 3 of 6 patients inducing defecation within the first 4 hours after the first injection (in two cases) or the second injection on the next day (1 patient). 2. In the patients where injections of methylnatrexone were not successful, the mechanical bowel obstruction as a supplementary problem to an opioid-induced constipation can be discussed. 3. None of the patients who received Metylnatrexone showed any adverse reactions or side effects. sessions (Saturday) Poster

11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 213 Poster sessions (Saturday) sessions (Saturday) Poster

214 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Index

Index Index 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 215 Index

A Antadze L 100 Bath P A 44 Aamdal T 73 Anton E 93 Battisti L 87 Aarsland D 117, 184 Antoni G 40 Baumann R M 140 Aass N 26 Apolone G 186 Baumgartner J 105 Abarshi E 80 Ara C 169 Bausewein C 40, 46, 50, 95, 105, 129, 165, Abbas S Q 57, 183 Aranda L 49 201, 210 Abbas Z 57, 183 Aranda S 90 Baxter S 35 Abbott J-A 146 Arantzamendi M 71, 139 Beatty S 190 Abe A 89 Archontakis F 33 Beaumont C 139 Abe P K 59, 188 Arias M I 61 Beccaro M 44, 83 Abela J 61 Arias S 40 Becker M 88, 89, 204 Abernethy A P 39, 63, 165 Arima H 89 Becker R 30 Abesadze G I 122 Arini T 170, 174 Beech N 72, 158 Abesadze I 100 Arnold R 44 Behmann M 49, 197 Abesadze I G 122 Arocas A 40 Bekele E 70 Abesadze J 106 Arseneau L 85 Bellamy G 116 Abesadze J G 183 Artigas R 85 Bellieu J 64, 82, 186 Abou-Elela E N 128, 132 Aruga E 107 Belmonte F J 209 Abrahamsen J F 73 Asai-Sato M 200 Belosa V 113 Adam J 57, 168 Aspernig A 120 Belschner W 123, 202 Adams A 95, 207 Astara G 40, 108 Beltramello C 124 Addington-Hall J 48, 51, 71, 83, 129, 158 Astuto M 189 Ben-Nun M 70 Adell-Bru J 56 Atieno M 96 Bena J 91 Aebersold D 66, 204 Atkinson J 97 Beng A L 85 Agar M 39, 63, 132 Aubeeluck A 67 Benkel I 62, 168 Agar M R 132 Aurnhammer K 150 Bennani-Baiti N 67, 127, 210 Agarwal G 168 Ausker N 121 Bennett M 116 Aggarwal G 164 Ausrotas R 167 Bennett M I 111, 204 Agupio G 47 Austin H 157 Benoit D 69, 77, 116 Ahmad F 140 Auth-Eisernitz S 62 Benson D L 130 Ahmed F 130 Axelsson B 83 Bentalha A 188 Ahmed N 30, 44, 47, 100, 101, 153, 182 Ayuso A M 91 Bentley A 176 Ahmedzai S H 47, 61, 64, 66, 73, 100, 101, Azevedo E F 104, 131 Berckmans D 184 153, 180, 182, 190 B Berenguer C 164 Aitken J 128 Babcock K 161 Beresford E 67 Aka J 163 Bachner Y G 60 Berger S 149 Alabiso O 79, 137, 177 Baddarni K 88 Bergsträsser E 190 Aladashvili T 187 Badosa G 110 Berkowitz M 38 Alam U A T 73 Balding L 128, 205 Bernal J 121, 157 Alarcón J 81, 87 Baldivieso S 105 Bernhart-Just A 81 Albanell J 101 Baldry C R 76, 86, 116 Bernheim J 125, 199 Albanese T 93, 171, 176 Ballard C 184 Berrang J 51 Albert E 102 Balzer S 191 Bertasiene N M 111 Albert N 91 Banga G 96 Bertolino M 49, 138, 139, 165 Alcaide J 127 Banga Nkurunziza G 173 Bertram L 41 Alducci E 124 Bannink M 136 Besson M 65 Alex R 68 Baracos V 34, 130 Bester L 132 Alexjuk E 94 Barak F 59, 203 Betkowska I 85 Ali S 186 Barallat E 64, 212 Beutel M E 58 Ali Z 96, 187 Barbarachild Z 73 Beyer A 146, 162, 180 Alibegashvili T 187, 198 Barber C E 70 Beyer S 117 Allard P 78, 161, 195 Barbosa A 43, 76 Bharadwaj P 73, 159, 191 Alloway L 74, 103, 186 Barbosa L A 104, 131, 143, 144 Bhatnagar S 88, 171 Almack K 69, 80, 116 Barbosa M F 104, 143, 144, 210 Biagetti L 141 Almeida A 211 Barbosa V L d S 60 Bialon-Janusz A 85 Alonso Babarro A 86 Barcelos F C 131 Bianchi E 82 Alonso L 81, 87 Barclay D 186 Bianty J R 88 Alonso M T 122, 173 Barclay K 70 Bieberdorf F A 107 Alonso Ruiz M T 91 Barclay S 156 Bielech M 131 Alsirafy S A 128, 132 Barker S 186 Biggerstaff B 42 Alsop A 79 Barlow C 77 Bigler S 197 Alt-Epping B 41, 84, 140, 174, 181 Barmaki M 128, 202 Bilger U 68 Altes J 209 Barnard S 77 Bilsen J 48, 51, 82, 83, 157 Amir Z 98 Barnes C 70 Birakurataki J 177 Amundsen S 138 Barnes E 115 Bird H 164 Anagnostou D 83 Barnes P 74 Birtar D 113 Ananiadou S 189 Barnes S 52 Bitschnau K 117 Anderson B A 77 Barrera A 122 Biziuk M 154 Anderson R 164 Barrett M 70 Bjarnadottir K S 124 Andersson M 154 Barrier J H 74 Bjordal K 66 Andreassen T 66 Barton L L 97 Blaafladt A 149 Andreu E 93, 94, 98 Bartsch R 48 Blacker S 76 Andriishyn L 104 Basson P M 192 Blanchard M 194 Annweiler B 203 Bataitiene E 102, 198 Blanco B 61 Index 216 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Index

Bleda M 125 Bueso P 87 Chambers E J 32 Bleda Pérez M 102 Bugden E 98 Chambers L J 51 Block B 201 Bull J 39, 63 Champagne M 190 Blum D 34, 60, 130 Bull J H 39 Chan R 161 Blumstein C G 204 Bunge S 49 Chang P-R 71 Blumstein N M 66, 204 Büntzel H 92 Chapman L 156, 184 Boban M 119 Büntzel J 92 Chattopadhyay S 116 Bobrov O 120 Burburan S 39, 82, 133, 210 Chaturvedi A K 88, 171 Boland J 61, 66, 73, 190, 209 Burburan S M 39 Chatwin J 77 Bollig G 71, 72, 177 Burczyk-Fitowska B 85 Chen W-I 71 Bolzan M 131 Burgard C 213 Cheng W-W 72 Bolzan M d F 60, 132 Burki C 151 Cherny N 49, 81, 167, 199 Bonaccia P 159 Burn J 52, 145 Chesters A 181 Bonati P 123, 137 Burne D 195 Cheung W 164 Bonfanti S 210 Burton A W 38, 186 Chiou Y-G 71 Bonino F 91 Burton-MacLeod S 131 Chmielarczyk W 89 Bonroy B 184 Burucoa B 74, 166 Choe W S 112 Bonwick H 142 Busa F 124 Choi S E 112 Booms M 98 Buss T 97, 131, 175, 179 Choudhary N H 129 Booth S 39, 40, 102 Buus I 63 Christ G 76 Boothe B 81 Bye A 40, 202 Christakis N 44 Borasio G D 42, 46, 52, 60, 92, 105, 113, 114, Bylund Grenklo T 68 Christie J 110 118, 121, 159, 180, 192, 193 C Christrup L 136 Börjesson S 163 Cabo R 122 Chye R 132 Borreani C 82, 83 Cabrera M 93, 94, 98, 205 Cialkowska-Rysz A 75, 181 Bosnjak S M 119 Cachia E 64, 73, 190 Cialkowska-Rysz A D 196 Bosshard G 31 Cairns C 154 Cintas R Y 209 Bosworth M 181 Callaway M 35 Ciric E 85 Boucher S J 51, 114, 192 Camba M 38 Cislaghi E 145 Boughey M 95 Cameron S 52, 59, 63 Ciupinska M 208 Bouzan M 180 Campa T 145 Clark D 33, 49, 64, 116, 125, 171, 178, 180, Bowen J C 106 Campbell C 155 197 Boyd K 156 Campbell M 86 Clark K 39 Brackenridge E C 56 Camprecios M 209 Clark K J 132 Bradshaw J 176 Canal J 64 Clemens K E 109, 198, 204, 207 Brady D 126, 180 Canal Sotelo J 212 Clemens K-E 140 Bragard I 47 Candy B 90, 171 Clerici M 169 Brajtman S 70, 74, 78, 91, 195, 206 Cañete J 168 Clifford M 103 Brandão P 105 Cannell L 184 Clipp E C 44 Brandstätter M 46, 60, 121, 193 Cantarell G 93, 94, 98 Closs S J 111, 116 Bras M 119 Capcelea A 120 Cobb M 116 Brasher P M A 108, 203 Capelas M 103 Cockshott Z J 99 Braun H 203 Capewell C 111 Codorniu N 125, 211 Braun J 165 Capitani M 164 Coelho A 137 Braybrook J 212 Caponero R 212 Coelho V 187 Brazil K 29, 78 Caraceni A 26, 40, 50, 186 Cohen G 70 Brenne E 41 Carduff E 50 Cohen J 48, 51, 83, 157 Brighetti G 200 Caress A 100 Cohen R S 201 Brinkkemper T 140 Carlsson B 56 Coimbra F 84 Brinkman A 151 Carmel S 60 Colberg T 38, 110 Brivio B 210 Carmona F 95 Coleman J 42 Brkljacic M 98 Carnahan R M 63 Colomar G 101 Broeckaert B 88, 171 Carrasco A 192 Colombat P 74 Brogaard T 58 Carvajal A 33, 59, 71, 130, 139 Colvin L A 39, 111 Broglio K 175 Casademont R R 112 Comendeiro M 119 Brooks D 209 Casadio M 100, 109, 200 Condon L 73 Brooks M J 78, 140 Casals R M 138 Connaire K 123, 124 Brown D J F 57, 168 Case R 80 Connor S 138, 139 Brown J 51 Castaño E 119 Conway J 172 Brown J M 204 Castillo M J 57 Cooley C 74 Brown M 181 Castro L S 144 Cooper M 68 Brown S 204 Cata E 192 Corchon S 71 Browne J 144 Cath B 72 Corcoran C 190 Browning J 130 Cattaneo D 79, 141 Corcoran G 62 Bruera E 38, 184 Cavers D 50 Cornbleet M 154 Brunelli C 50, 82, 186 Cawley D 100, 212 Cornbleet M A 45 Bruni C 97 Cedraschi C 101 Corner H 74 Bruni M 109 Centeno C 48, 49, 59, 130, 139, 178, 207, Correa A 139 Brunner M K 92 212 Costa M 169 Bruto V 195 Cernat B 124 Costa-Requena G 168 Bryan L 70 Cerqueira Gomes L 60 Costantini M 44, 83, 116 Bucinskiene V 102, 198 Cerqueira L 82, 105, 180, 211 Coyte P C 92, 161 Buekki J 81, 160 Cervek J 85 Crabbe K 178 Buera M 93, 94, 98 Ceulemans L 153 Craig F 193 Index 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 217 Index

Crespo i Bosch M 102 Deeg D J 47 Dziegielewska S 97, 195 Crippa S 210 Dees M 79 E Cristofol R 168 DeFilippi K 52, 59, 63, 141 Ebert Moltara M 85 Crockett A 39, 165 Deguchi T 93, 159, 163 Echteld M 80, 117 Cronin M C 65 Dehghan R 103 Echteld M A 80 Crooks V A 168 Dekkers W 79 Eckerdal G 56 Crosbie B 69, 194 Del Rincon C 192 Edghill A 172 Crul B 82 del Río I 123 Edmonds P 166 Csikos A 93, 171 del Río Silva I 137 Edra N 211 Cuervo M A 207 Delaloye S 101 Eggebrecht D 84 Cujec B 98, 172 Delargardelle I 58 Eggenberger E 154 Cumming C 124 Delgado-Guay M O 184 Eichstädt C 85, 145 Cunha S 170 Deliens L 48, 51, 80, 82, 83, 117, 125, 157, Eiffert H 41 Curammeng L P 169 199 Eilegard A 67 Curfs L 121 Dell’Orto C 210 Eisner F 67, 87 Curiale V 117, 177, 194 Delvaux N 47 Ekeström M-L 160 Currow D 132 Demeulenaere P 153 El Faramawy Y I 128, 132 Currow D C 39, 63, 165 Demmer C 146 El Mesidy S M 128, 132 Custureri R 117 Dempers C L 57, 141 Elandt K 147 Cytawa W 154 Demskyte J 111, 198, 211 Ellams G 76 Czapiuk G 45 Denhaerynck K 208, 209 Ellershaw J 126, 187 D Denis-Delpierre N 74 Ellershaw J E 78, 84, 158, 204 D’Amico S 189 Denisov V N 44 Ellingsen E 57 D’Urbano E 75, 164 Denke E 118 Elme A 141 Dabouis G 74 Dennison C 91 Elsner F 40, 41, 137, 142 Daeninck P J 109, 110 Depallens Y 151 Elvira de la Morena J E 203 Dal Sasso L 124 Deramé L 199 Elvira de la Morena M J 169 Dale O 66 Derycke N 153 Ely H 143 Dalia G 65 Deschepper R 51, 125, 126, 199 Ely J C 119 Dalri C 169 Desmedt T 137 Emerson E 180 Dalton M 159 Desmeules J 65 Encinas P 122 Daly A 33 Dessì M 40, 108 Engels Y 47, 82, 100, 148, 153, 163, 182 Damps-Konstanska I 175 Destro M 87, 109 England J 159 Dando N 56 Di Cataldo A 189 England S 56 Daniels F 205 Di Leo S 44, 83, 164 Englert M 46 Dantoc B P 60 Díaz-Benito J 124 Erdine S 36 Dashchenko A 120 Dickman A 140 Ericson K 56 Dathe A 203 Dieckmann K U 147 Eriksen J 144 Daud M L 75, 164 Dielis W P 73 Escalada H 111 Davidov E 60 Diemer W 85, 145 Escher M 65 Davidson P M 53 Dietz I 42, 75 Escher-Imhof M 101 Davie E 118 Dighe M 129, 192 Espinosa J 85, 110 Davies A 38, 61, 125, 200 Dinat N 47 Esteve J 185 Davies A N 130 Dippenaar H 192 Estfan B 103, 127, 180 Davies D 144 Doboszynska A 156 Estrine K M 86 Davies R 115 Dobrogowski J 108 Etienne A-M 47 Davis A N 66 Domeisen F 199, 205 Eto H 206 Davis M 103, 171 Dones M 61 Eulitz N 84 Davis M P 42, 127, 145, 180 Donker G A 80 Evans N 27 Dayer P 101 Dorner W 69 Ewald H 75 de Boer M 199 dos Santos Nunes M d G 132 Ewing G 45, 102 De Conno F 49 Downing J 33, 43, 47, 96, 187 Eychmueller S 26, 32, 65, 164, 199, 205 De Gaudio A R 69 Downs F 176 Ezekowitz J 98, 172 de Graeff A 56 Draper B 132 F de Kock I 131 Draper G 116 Fabregat J P 212 de Kock I H 105, 211 Drayton M 175 Fagnoni E 145 De Luca A 154 Dreher U 71 Faily J 131 De Luca B 79 Drennan J 76 Fainsinger R 26, 38, 184, 190 de Luis Molero V J 61, 86, 169, 203 Drijfhout M 163 Fakrodeen S 105 De Maesschalck L 184 Droney J 125 Falckenberg M 140, 189 De Marco A 138 Duaso N 94, 98 Fallon M T 39, 111 De Miguel C 57 Duddle C 140 Fariñas-Balaguer O 56 de Nijs E 56 Duivenvoorden H J 136 Farrington C 188 De Raedt M 153 Dulitzky S 75, 164 Farriols C 40, 101 de Renzie-Brett H B 69 Dulmage F 161 Fassbender K 92 De Santiago A 59, 139 Dumitrescu M 143, 181, 202 Faulkner J P 76 de Santiago Ruiz A 130 Duplock L 155 Fayers P 26 De Silva C 200 Durán A 173 Fazekas B 39 De Simone G 75, 164 Durán Á M 122 Fealy G 76 de Stoutz N 96 Durand J-P 45 Fear T 69 De Walden-Galuszko K 133 Duro E J 67 Fearon K 34, 40, 130 de Winter H-J 99 Duroux A 52, 113, 114, 193 Fearon K C 34 De Wit A 151 Dutka J 206 Fearon K C H 34, 111 Dedobbeleer I 111, 195 Duval M 191 Fegg M 46, 60, 92 Index 218 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Index

Fegg M J 46, 105, 121 Froggatt K 26, 29, 44, 78, 156, 194 Gleeson A B 123, 124, 165 Fein L E 151 Fruhwald F 94 Gleim M 140 Feio M M 84 Fryc A 164 Glossmann J-P 119 Fenlon D 129 Fuehrer M 52, 113 Glowacka A 208 Fernandes R 99 Fuentes S 125 Gock H 157 Fernández A 85 Fugaccia E 164 Gockel H-H 140 Fernandez Rodriguez-Lacin J M 177 Führer M 113, 114, 192, 193 Gockel M 180 Ferragut E 119 Fukushige T 108 Goddard C 117 Ferraz Gonçalves J A 60, 211 Funk M N 68 Goebel A 186 Ferreira L 114 Fürst C J 14, 18, 68, 83, 87, 160, 198 Gog C 203 Ferrer Perez A I 107 Fuster J 119 Goh C R 85 Fialho L 133 Fyfe D 99 Gol J 133 Fiechtner H 59, 129 G Goldner G 147 Fierro C 200 Gabrovska M 111, 195 Goldwasser F 45 Figueira M 105 Gaertner J 119, 120 Golebiewska J 97 Filbet M 90, 128, 136, 202 Gaffney R 74, 103 Golla H 94, 96 Filipczak-Bryniarska I 108, 207 Gage L 195 Golubovic V 98 Fillol A 192 Gagnon P 195 Gomas J-M 133 Fineberg I C 78, 196 Galan V 186 Gomes B 165 Finelli S 44, 83 Gale S 45, 128, 141 Gomes L C 103 Finlay I 56, 76, 110 Galea T 91, 122, 173 Gomes R 60 Finlay I G 120, 202 Galesloot C 104, 114 Gomez Salcedo P 86 Finn A 107 Gallén M 101 Gómez-Batiste X 47, 100, 153, 182 Finnegan C 72, 81, 130, 184 Gallo G 173 Gómez-Contreras T 56 Firth P H 31 Galloway L 38 González E 81, 87 Fisch M 38 Galushko M 27, 94, 96, 160, 162 González P 122 Fischbeck S 58 Gambles M 68, 78, 204 González-Barboteo J 85, 110 Fisher T 38, 187 Gambles M A 84 Gootjes J 140 Fittkau-Toennesmann B H A 72 Gámez D 122 Goraj E 89, 111 Fitzgerald P 123 Gámez García D 91 Gordon E 147 Flanagan S A 127 Gammage L 142 Gorog I 93 Flego G 44 Garcia-Baquero Merino M T 32 Gorritxo R 111 Fleming J 64 García-Esquinas E 57 Gotsiridze T 199 Fletcher A 61 Garcia-Marcet N 56 Gott M 52, 116 Fletcher S M 73 Gardiner C 52 Gottfried H W 66 Flores Belmonte J 195 Gardner J 151 Gottschling S 51 Florián J 87 Garelius H K 78 Gottwald L M 196 Floyd S 165 Garland E 42 Gough N J 61 Flynn E 72 Garrido S 57 Gough S L 61 Fokke J 148, 153 Garrigue N 164 Gouveia e Melo C C 68 Ford-Dunn S 56 Gartner V 48, 58, 81, 84 Goya S 87, 108, 206 Forrester-Jones R 155 Garzon C 211 Gradalski T 85 Forster C 159 Garzón C 85, 110 Graeber S 51 Forster M 199 Gasser R 81 Graeter R 66 Förstl H 118 Gatrell T 180 Graf B M 206 Fortin S 191 Gay G 133 Graf N 51 Foster A 151 Gblokpor A 63 Graham S 82 Foster C 121, 129 Geerling J I 133 Gramm J 58 Fountain A 130, 184 Gehmacher O 122, 127, 208 Grance G 75, 164 Fowell A 56, 76 Geiss G 123, 201, 202 Grande G 45 Fowler C 69 Geissler C 208 Grande G E 123 Fowler-Kerry S E 112 Geissler K 208 Grant L 50 Fradique E 137 Georges J-J 79 Graschopf L 112 Frame K 45 Geretschlaeger A 204 Grasser M 113, 114 Frampton E C 62 Gervásio H 187 Grau A 81 Franchini S 87 Geurs F J C 111, 195 Gravelle D 178 Franco Rubio C 91 Ghadjar P 66 Gray H 168 Frandsen L 144 Gherman L 120 Grebe C 63 Fransson G 83 Ghiringhelli R 145 Greco M T 186 Fransson R 154 Ghvamichava R 106 Greenblat C 171 Frate D 71 Ghvamichava R R 100, 122, 183 Griffiths D 45 Fraus F 43 Gibbins J 26, 50 Griffiths J 31 Frechen S 120 Gielen B 66, 90 Griffiths R 132 Freeman W J 80 Gielen J 88, 171 Groenvold M 41, 58 Freier W 59, 129 Giesen H-U P B 100 Grogan E 97 Freiherr von Hornstein W 68, 153 Giesen-Nijenhuis C M A 104 Groot M 104, 163 Freitas R 82, 210 Gijsberts M-J H E 117 Groot M M 114, 153 Freixa R 209 Gikaara N 96 Gross U 41 Friberg F 126 Gil O T 61 Grossenbacher-Gschwend B 65, 205 Fridlund B 159 Gil Sierra M 91 Groves K 72, 81, 84, 179, 187 Fridriksdottir N 208 Gilardi M 210 Groves K E 56, 76, 77, 86, 163 Friedland C 191 Gillespie C 47 Groves S A 86 Frith P 39 Gingerich J 109, 110 Gruber K 145 Froehlich H 183, 213 Gingerich J R 110 Gubskiy Y 120, 149 Index 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 219 Index

Gudat H R 46 Hayes D M 64, 65, 142 Hook M 142 Gudmannsdottir G D 59, 80 Hayn-Völkl E 145 Hopkinson J B 129 Guerin C 158 Haynert H 97, 152 Hopp F 52 Guerreiro V 43, 76 Hays J 44 Hornek S 93, 154 Guerriere D N 92, 161 Heal R 62 Hörnlein B 155 Gugic J 85 Hechler T 153 Hornung R 190 Guirguis Younger M 43 Heedman P-A 83 Hotopf M 35, 41 Guirguis-Younger M 78 Hegedus K 21 Hotta Y 89 Guisado H 127, 199 Heidegger D 155, 176, 206 Hough J 84, 187 Guldemond A 151 Heimerl K 118, 178 Houttekier D 48, 83 Guldin M-B 58, 67 Helbostad J L 34 How C 128 Gunaratnam Y 121 Held E 100 Howard J 102, 142 Gunnarsdottir S 138, 208 Helgadottir S 59 Howard P 130 Guo Y 88 Helgesen R 101 Hoy A 42 Gupta H 88, 171 Helgesson G 161 Hrebejk G 128 Gustavsson A-K L 203 Hell J 46, 105 Hübner J 203 Gutgsell T 103 Helland-Nergaard T 151 Hudson P 90 Gutiérrez D 95 Heller A 162 Hudson P l 90 Guyer C 86 Heller M 175 Hugel H 62, 64, 110, 186 Gwyther L 47, 106 Helsdingen S 195 Hughes J C 94 Gysels M 27, 40, 52, 92, 205 Hemming L 69 Hughes N 116 Gysels M H 52, 92 Henkel W 153 Hughes P M 44 H Henoch I 134 Hughes S 98 Haarmann-Doetkotte S 46, 92, 121 Henriksson A 89 Hultkvist S 62 Habjan S 85 Hentrich M 121 Hultkvist S E K 68 Hackspiel S 122 Herincs G 112 Humbert N 191 Hadjistavropoulos T 194 Herlofson B B 160 Hunsmann G 41 Hagen N 38, 108, 203 Herndon J E 39 Husebo B S 58, 73, 117, 138, 184 Hagen T 92, 159 Herve C 167 Husebø B S 15, 138 Hagena A 107 Herzog S 153 Husebo S B 58, 73, 117, 138 Hager L 131 Hess J 60, 130 Hutchinson T 156 Hain R 115 Hewitt B 98 Huygen F 98 Hait B 183, 213 Hidayatullah M 99 Huygen F J P M 157 Halfdanardottir S I 80 Higashiguchi T 76 I Hall L 162 Higgins S 172, 190 Inagaki T 65 Hall P 70, 71 Higginson I 83, 95, 187 Inauen R 50 Hall P G 74 Higginson I J 35, 40, 41, 47, 50, 52, 92, 96, Inghelbrecht E 82 Hall S 116, 117 116, 117, 165, 166, 173, 205 Ingleton C 77, 90, 168 Halldorsdottir S 124 Hignell A 118 Ingleton M C 116 Hallek M 119, 120 Hill V 168 Inglin S 190 Halpin D 52 Hilliard S 103 Irani S 86 Hamann J 118 Hiney B 175 Irazábal I 61 Hammerl B 208 Hinshaw D 152 Irvine C 210 Hammond R 158 Hirahara F 200 Iser K 71 Hanaoka K 148 Hirayasu Y 200 Isherwood R 62 Hand R 159 Hirsch B 180 Isolani E 210 Hanekop G G 206 Hirst B 63, 86 Israel R J 41 Hanks G 11, 32, 50 Hitchlock K 204 Ito N 205 Hannon B L 65, 123 Hjaltadottir I 59 Itou T 188 Hansen G M 63 Hjermstad J M 17 Iversen P O 40 Hansen O B 136 Hjermstad M J 26, 40, 160 J Hantikainen V 208, 209 Hjortbak E 144 Jääskeläinen A-S 141 Haraldsdottir E 79 Hladschik-Kermer B 48, 58, 84 Jack B 84, 156, 163 Harding R 47, 96, 103, 173, 187 Hochgerner M 94 Jack B A 88, 91, 177 Harlum J 132 Hockley J 117, 196 Jacobsen R 136 Harrington J 77 Hockley J M 29 Jager A 107, 136 Harris D 96 Hodgkinson B 137 Jakrzewska-Sawinska A 164, 195 Harris F 50 Hodgson A 61 Jamal H 95, 141 Hart S 95 Hodgson A K 142 Janberidze H 198 Hartley N A 43, 62, 70, 200 Hodnefield T 98, 172 Janiszewska J 97, 131, 175 Hartshorn A J 60 Hodson M 180 Jansen W J 118 Hartwig A 96 Hoenger C 101, 151, 197 Jansen-de Bos I 56 Hashiguchi S 99 Hoernlein B 176, 206 Janßen G 191 Hashimoto T 106 Hoffmann M 146 Jarosz J 89, 111, 146 Hasselaar J 47, 82 Höfle G 127, 208 Jaspers B 30, 47, 48, 88, 89, 100, 148, 153, Hassler M 48, 58, 81, 84, 147 Hofmann M 92 174, 182, 198, 204 Hatto R 65 Hogan D 195 Jefferson M 96 Hatziandreou E 33 Hogan K-A 194 Jenney M 115 Haugen D F 31, 62, 101 Hogan T 147 Jensen A B 58, 67, 155 Hauke G 121 Holderied A 162 Jesus M 105 Hauken M A 101 Holguin-Licón M 182 Jimenez A 64, 212 Haworth S J 56 Hollander L F H 73 Jincharadze M 100 Hayden D 74 Hollins S 121, 157 Jincharadze M I 183 Hayes D 123 Honecker F 59 John P 129 Index 220 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Index

Johnsen A T 41 Kinast K 52, 113, 114 Lagman R L 42, 91, 180 Johnson L 151 King C 88 Laird B J A 39, 111 Johnson M 204 King M 77, 90, 194 Lakey S 183 Johnstone R P 56, 76 King N 101, 201 Lakic D 111 Jones A 64 Kinugasa E 188 Lakicevic J 111 Jones L 77, 90, 171, 172, 194 Kirkova J 127 Lam L 132 Jones M 78 Kisiel-Sajewicz K 145 Lama M 111 Jones T 187 Klaschik E 47, 88, 89, 100, 109, 153, 198, Lambea J 107 Jongen J L M 98 204, 207 Lamino D A 107 Jønsson B H 144 Klein B 48, 114 Landete A 169 Jonsson P V 59 Klein U 120 Landman W 38 Jordá P 81, 87 Klepping G 130 Landon A S 97, 181, 202 Jordan A I 94 Klepstad P 26, 66, 138 Lanes F S 210 Jordhøy M 26, 40 Klinger C 71 Lang C 66 Jorge M 75, 164 Klinkenberg M 43, 99 Langenbach R 58 Josephsson S 171 Klinowiecka A 146 Lannen P 52 Jox R 121 Kloke M 49, 138, 182, 212 Lansdell J 72, 158 Jox R J 42, 46, 118, 192 Knight A 38, 187 Larumbe A 130 Juarez S D 151 Knorreck F 133 Lasheen W 103, 171 Julià i Torras J 102 Knudsen A K 17, 26, 186 Laska I 176 Jünger S 119, 125, 178 Köberle D 60 Laske A 75, 85, 145 Junker U 110 Koch S 203 Lasne-Hachin B 199 Jusic A 119 Koffi J 163 Lasrado S 192 Just J 152 Koffman J 56, 166 Latten R 78, 204 Juvero T 64, 138 Koffman J S 27 Latvala A 129 K Kögler M 46, 60, 121 Laurent A 128, 202 Kaasa S 17, 26, 34, 38, 40, 41, 48, 50, 51, 66, Koh M 193 Laurs L 211 110, 133, 138, 185, 186 Koh S 140 Lauton S 57 Kaasalainen S 78 Kojer M 118 Lawlor P 26, 38 Kabasinskiene R 102, 198 Koleci G 176 Lawlor P G 190 Kachuik L 178 Kollar A 204 Lazar A 181 Kaczmarek Z 185 Kolliakou A 116 Lazárková M 70 Kager H 115 Kordestani Nejad R 41 Le Grand S 127 Kainz H 145 Kordzaia D 187, 198 Le Grand S B 42, 180 Kamijyo A 200 Koshikawa K 106 Leach A 187 Kang E S 112 Kosson P 146 Leatherbarrow J 161 Karlsson K 62 Kotlinska-Lemieszek A 75, 189 Ledesma E 138 Kasotia N 192 Kozak J 85 Lee S 138 Kataike J 96, 173 Kraan M 179 Lefebvre D 185 Katérla J 152 Krahn M 109, 110 Legault F 78, 178 Katsaragakis S 169 Krakowiak P 166 Legault S 161 Katsarava M 100 Kralik D 77 Leget C 160 Kaye G 38 Kramer M 46 LeGrand S 103, 171 Kaye R 43 Krasovskaja A 211 Lehner E 166 Kazmierczak-Lukaszewicz S F 196 Kraus F 43 Leigh N P 96 Keane Campbell G 143 Krawczyk R 201 Lemanski L 109, 110 Keegan O 64 Kreicbergs U 52, 67, 68 Lemieux L 144 Keeley P W 128, 175, 204 Kreitler M 203 Leong D S 13 Keenleyside G 61 Kreitler S 59, 203 Lepori S 108 Keil F 145 Kress H G 36, 38, 110, 185 Leppert W 44, 47, 100, 148, 153, 182, 188, Kelley M L 43, 50, 78, 85 Krischke N 123, 201, 202 189, 201 Kelly J 100 Krol R 179 Leung A 38 Kelly J M 80 Krumm N 47, 89, 137, 142 Leveälahti H 160 Kelly S 103 Kudzia M 97 Leventhal M E 96 Kendall C 142 Kues K 137 Levinson P 98 Kendall M 50, 156 Kuhlen M 191 Lewis-Jones C 78, 130 Kendall M L 29 Kühnbach R 40 Leysens G 184 Kennedy S 69, 116 Kuin A 150 Libert I 184 Kennedy S M 80, 182 Kuipers E 199 Librach L 161 Kennett A 125 Kukkastenvehmas R 194 Librada Flores S 195 Kenny B 39 Kumar A 78 Librada S 91 Keogh C 73 Kumar S 197 Lichodziejewska-Niemierko M 97, 131, 154, Kerkhof A J 47 Kunz M 166 175, 179 Kern M 150, 174 Kurita G P 107, 212 Liénard A 47 Kersten C 102 Kushizaki H 106 Lieverse P J 107 Kessler A 71 Kuzumaki N 207 Likar R 115 Khan P 57, 183 Kyeremateng S 209 Lima S G G 104, 131, 143, 144 Kidd H H E 196 L Limoni C 130 Kierner K 81 la Cour K 171 Lin C-C 155 Kierner K A 48, 58, 84 Laborda A B 87 Lindahl R V 149 Kilcommons G 143 Lackinger D 128 Lindberg G 56 Kilersjö A 56 Lacour-Krause S 92 Lindblad A 161 Kiman R J 191 Ladner T 38 Lindena G 140, 174, 181 Kimmig B N 75 Lagman R 103, 127, 171 Linder S 34 Index 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 221 Index

Lindon F 172 Malik F A 205 McConnell P C 143 Lindquist I 154 Mallet D 74 Mcdonald C 39 Lindquist J 44 Malofiy L S 104 McGlinchey T M 84 Linster H W 167 Malveira R R B 104 McGonagle C 144 Lipkowski A W 146 Mammana G 49, 138, 165 Mcintyre S 91 Lisaerde J 153 Manalac T 176 McKee M 43, 78 Littlewood C 80, 82, 140, 161, 172, 179 Manalo M F C 75, 162 McKenna E 64, 156, 186 Littlewood C M 100 Mancheño A 169 McKeown A 154 Ljunggren A E 58, 117, 138 Mandel B 175 McKeown K 64 Lliro X 125 Maniezzo M 145 McLaughlin K M 146 Llorens S 85, 110 Mannefred C 62 Mclaughlin P 168 Lloyd A 50 Mannion E 128, 143, 205 Mcloughlin K 143, 190 Lloyd-Williams M 41, 73, 128, 136 Mannocci Galeotti M 69 Mcmillan D C 57 Lobchuk M M 91, 194 Mantovani G 40, 108 McNeil L E 62, 141 Locke L 178 Marcello J 39, 63 McPherson C 78 Loeff M 52 Marchal S 47 McPherson C J 91, 194 Loge J H 17, 34, 41 Marcinkoski R 144 McWilliams K 128 Løhre E 17 Marcoux I 74 Meguro N 148 Løhre E T 133 Mardofel A 75, 181 Meinshausen G 153 Loi C 108 Mariani L 145 Melvin J 101 Lombardi F 210 Marine P 138 Menaca A 27 London K S 86 Marinelli F 159 Meñaca A 27 Longmate A 154 Marini C 202 Mendel R 118 Longoni C 79, 177 Marini M C 130 Menten J 47, 100, 148, 153, 182 Lopes Oliveira A 84 Markett S 48 Mercadante S 38 Lopez D 86, 107 Marley K 78, 130 Merckaert I 47 Lopez M 205 Marlow C 125 Merriman A 177 Lorenzl S 92, 132, 146, 162, 174, 175, 180 Marlow C E 106 Mertens R 66, 90 Lossignol D A F 46, 47, 184 Marosi C 147 Messer P M 66 Low J T S 172 Marquéz R P 209 Messerli E 160 Lücking C 175 Marschner N 59 Metivishvili G 106 Lückmann S L 49, 197 Marshall E 100 Metz C 30 Ludwig H P 147 Marston J M 51, 105, 114, 153, 192, 193 Meuleman-Peperkamp I 195 Luker K 98, 175 Marston R H 192 Meunier J 46, 47 Lund J-Å 133 Martin E 122, 173 Meyer C 185 Lund L 58 Martín E 122 Meyer S 51 Lundh Hagelin C 132 Martin J R 141 Meystre C 181 Lundorff L E 144 Martin M 95 Miccinesi G 48, 51, 82 Lundström S 66, 83 Martín R 169 Michael N 144 Lupi S 84 Martín S 169 Michaud M 206 Lüthy C 101 Martin-Moreno J 49 Michel B 184 Luzzani M 164 Martin-Moreno J M 33 Michels S 68 Lynch M 172 Martinez E P 209 Middelburg M 99 Lynch T 49, 73, 178 Martínez Losada E 102 Middlemiss J M 170 Lynn R 41 Martinez M 59 Middlemiss T P 170 Lynøe N 161 Martínez M 71 Midgley C 61, 141 M Martino R 192 Midgley C J 107, 149 Maakestad I H 40 Martynyuk-Gres’ S 149 Mikkelsen S S 58 Mac Mahon J 180 Mashao T 47 Milecki P 201 Macauley P 132 Mashayekhi S 115 Miles G 48 Macchi M 139 Mashimo T 148 Millán M L 81 Macciò A 40 Mason B 156 Milliss D 164 Maceira S 164 Mason C 190 Mino J-C 182 Mack J 52 Mason L D 46 Miranda J M G 209 MacKay H 175 Massa E 40, 108 Mirhosseini M 105, 131, 144, 211 MacKinnon C J 201 Mastrojohn J 93, 171, 197 Mishra S 88, 171 Macková M 70, 190 Masucci L 92, 161 Mitchell A 62, 141 MacLean M 43, 85 Mate J 125 Mitchell G K 29 MacNeil C 143 Maté-Méndez J 85 Mitrea N 150, 151 Madeddu C 40, 108 Materstvedt L J 30 Miyagi E 200 Maden S 209 Mathis G 122, 127 Miyashita M 87 Madiye G 35 Matoba K 89, 93, 159, 163 Mmoledi K 47 Maguire H 191 Matoba M 207 Modlinska A 131, 166, 175 Mahdi B 181 Matoke R 187 Moe-Nilssen R 58, 117, 138 Mahdi T 181 Matos A 137 Moen J P 119 Mähler S 62 Matsuda R 108 Moerk L 121 Mahoney M 72, 158 Matsuda Y 108, 206 Mogollo A 95 Maier B-O 58 Matsumura T 200 Moksnes K 185 Maier C 140 Mattukat V 212 Molander U 168 Majado Marquez B 195 Maurer M A 119 Møldrup C 136 Majkowicz M 97, 133, 189 Mayland C 142, 158 Moles E 81 Makin M 140, 152 Mayoral V 110 Molina T 169 Makin M K 187 Mc Donald L 71 Moll T 47 Malik F 92 McBride T 33 Mollard J M 47, 100, 148, 153, 182 Index 222 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Index

Möller M 152 Neuhaus S 41 Onelov E 52 Mongeau S 190 Neves S 84 Ono Y 108, 206 Monleon M 192 Newton J 138 Onwuteaka-Philipsen B D 42, 47, 48, 51, 80, Monserez D 199 Ngouolele C M 163 83, 126, 157, 161 Montag T 193 Nicholls P 129 Øren A K 177 Montalvo G 192 Nicholls V M 168 Orgiano L 108 Montanari M 186 Nichols A 33 Oronska A 38, 110, 185 Morasso G 164 Nicolai T 192 Orsholm I 62 Morgan M 166 Nieland P 207 Orsi L 69 Morita T 93, 159, 163 Nkosi B 192 Osowicka M 131, 133, 154 Morris C M 36, 197 Noble B 44, 47, 61, 63, 86, 100, 101, 116, Osprian I 87 Morris V 67 148, 153, 182, 204 Ostgathe C 27, 41, 89, 94, 96, 119, 120, 160, Mortier F 51, 82, 125, 199 Noble Burnand A 151 162, 174, 193 Mosoiu D 35, 93, 120, 139, 143, 152 Noguchi T 148 Ostgathe E 174 Mosoiu N 152 Nogueira T A 104, 143 Ostrowsky L 59, 203 Mota D D C F 107, 212 Noguera A 212 Oswald S 162 Motooka A 106 Noguera Tejedor A 190 Othero M B 170, 174 Moulin D 108 Nolan M 168 Ottesen S 160 Moutel G 167 Nolte T 38, 110, 184, 185 Otto M 202 Mpanga Sebuyira L 47 Nordell K 171 Ottolini L 87, 109, 169 Muckaden M 129, 192 Nordstrønen Å 177 P Mueller M 48, 71, 150 Norman K 72 Pace V 195 Müller A 203 Normann A P 57, 149 Paes P 94 Müller M 30 Nortje N 105 Paillet D 199 Muller M T 117 Novikov G A 198 Pajares I 107 Müller-Busch H C 167 Nsubuga C 96 Pala L 108 Müller-Fröhlich C 208, 209 Nsubuga Kwebiiha C 173 Palacios M 126, 148 Mullins D 70 Nyatanga B 125 Palma Behnke M A 137 Munene G 96 Nyberg U 52 Palma M A 123 Muntean M 181, 202 Nybø G 202 Palmer J L 184 Munteanu A 93 O Palmer L J 88 Murphy D 84 O’Brien E 212 Palmisano B 71 Murphy I 147 O’Brien M 91, 125, 156 Palomar C 64, 138, 212 Murphy M 65, 103, 123, 142, 174 O’Brien T 65, 90, 123, 142, 144, 155, 168, Panagiotou I 169 Murray A 61 174 Panajatovic B 47 Murray A S 142 O’Brien T A 168 Pannuti F 100, 109, 200 Murray C 80, 161, 210 O’Connor L 78 Pannuti R 100, 109 Murray G D 111 O’Connor M 22, 34, 48, 67, 138, 146 Panzone F 40 Murray J 150 O’Driscoll F 144 Papazoglou I 170 Murray S 28, 50, 117, 156, 196 O’Driscoll S M 76 Papke J 59, 129 Murray S A 29, 45 O’gorman B 147 Papke J H 149 Murtagh C 157 O’Hanlon B 90 Papke S 149 Murtagh F 95 O’Leary M-J 174 Pappa D 170 Murtagh F E M 50 O’Siorain L 123, 124, 165, 190 Pardon K 125, 199 Mussa A 154 O’Sullivan T 147 Parikh N 192 Muszynski Z 208 Oberholzer R 34, 60, 211 Parker D 29, 137 Mutterback E 178 Obiols M 46 Parmar J 97 Mwangi-Powell F 35, 43, 96, 187 Obiols-Portis M 184 Parpa E 169 Mystakidou K 169 Ochoa A B 111 Parsons H A 184 N Oganesyan G A 136 Partridge M 57 Nabal M 64, 138, 212 Ogawa S 148 Pasman H R W 42, 161 Nadin S 43 Öhlén J 126, 154 Passchier J 136 Nagpal U 192 Ohly A 180 Passini A 145 Nair S 129 Ohnsorge K 46 Pastrana T 178, 197 Nakagawa S 206 Okamoto I 121, 129 Paternostre B 166 Nakagawa T 106 Okamoto N 200 Pattenden J 172 Nakatani T 65, 106 Okamoto Y 206 Pautex S 127, 177, 194, 199 Namiki A 148 Okishiro N 87, 205 Pawlowski L 179 Namisango E 96, 173, 187 Olafsdottir K L 80 Payne S 45, 51, 52, 73, 77, 99, 119, 125, 146, Namukwaya E 197 Oldenbourg R 202 156, 175, 176 Narita M 207 Oldenmenger W H 107, 136 Payne S A 26, 90, 126, 168 Nauck F 41, 47, 84, 88, 89, 140, 160, 181, 204 Oldervoll L 17, 202 Paz Ruiz S 30 Naylor C L 103 Oldervoll L M 202 Paz S 47, 100, 153, 182 Neergaard M A 58, 155 Olesen F 58, 155 Pazos I 187 Nehring C 58 Olesen K 144 Pease N 202 Nejmi M 188 Oliete E 169 Pedersen L 41, 58 Nekolaichuk C 38, 124, 139, 190 Olivares P 137 Peel T 97 Nekolaichuk C L 124 Oliver D 68 Peirano G 49, 138, 139 Nemcová J 142, 169 Oliver D J 28, 155, 172, 173 Pelosi M 210 Nemeth C 49 Oliviere D 23 Peltarri-Stachl L 49, 117, 164 Neri M F 140 Olofsson B 56 Penfold S 96, 173, 187 Nervi F 123, 137 Olsen M K 44 Perego M 210 Neto I G 43, 76 Olszewska A 166 Pereira J L 126, 148, 161 Neuenschwander H 130, 136 Omlin A 60, 130, 211 Pereira L C 104, 143, 144 Index 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 223 Index

Pereira S 211 Prete C 117 Riera M 101 Pereira S M 200 Prifti M 176 Rigby J S 156 Perez D 127 Prikker E 151 Rijswijk E 163 Perez E 138 Prince H 50 Riley J 125, 185 Perez R 212 Prino A 79, 137, 177 Riley J L 175 Perez R S G M 140 Prinz-Rogosch U 183, 213 Rimac M 157 Perez-Martin X 211 Probst L 101 Ripamonti C 145 Perkins P 186 Pruijn J 199 Riquelme i Olivares M 102 Perry B 89, 115, 147 Przybyslawski B 154 Rithara S M 92, 147 Pestinger M 31, 40, 47, 142, 178 Purssell-Francois I 167 Ritter M 200 Petersen M A 41, 58 Pype P F 148 Ritzenthaler B M E 106 Petrovic M 116 Q Rizzi B 79, 141 Pfaff H 160 Quan H 105, 184 Rizzo G 189 Pfister D 48 Quednau I 109 Robbertze M 51 Pfisterer M 177, 194 Querido A 158 Roberts A L 142 Philip J 157 Quinn I 94 Roberts D 100 Phillips J 176 Quinn K 90 Robles A 192 Phillips J L 53 Quinn K A 90 Rocafort Gil J 195 Phillips P 132 R Rocafort J 178 Phillips S 102 Radbruch L 14, 18, 34, 38, 40, 41, 47, 49, 81, Rocchetti L 169 Piazza S 79, 137, 177 88, 89, 119, 125, 137, 138, 142, 160, 174, Rocha C R 170, 174 Pieringer W 166 178, 197, 204 Rodrigues N 60 Piers R 69, 77, 116, 137 Radford H 204 Rodriguez A M 201 Pietruk K 156 Radwany S 71, 93, 171, 176 Rodriguez J 48 Pigni A 50 Raijmakers N 27 Rogers E 61 Piguet V 65, 101 Rainer F 63 Rogers M 100 Pilgram H 105 Raischl J 180 Rolski W 189 Pilotto F 210 Raj R 82 Romera E G 192 Pimenta C A M 107, 212 Rajer M 85 Romero P 95 Pinter G 69 Rajvanshi A 88, 171 Romero V 91, 122, 173 Pinto C 60 Ramaswamy A 85 Ros W 48 Pinto C S 82, 180, 210 Ramos A 137 Rosano G 189 Pinto D 159 Ramos L 130 Roser T 159, 201 Pinto M M 84 Ramsenthaler C 201 Ross J R 70 Piribauer M 212 Randall F 31 Rossi C 44 Pissarro C 187 Ransom P 94 Rotaru M 120 Pitts V 181 Rapelli C 151 Routlegde P 115 Piva L 82 Rauck R L 186 Rozukiene L 167 Planas J 40, 101 Rayner L J H 35 Rudansky C 175 Pleschberger S 51, 93, 126, 154, 178 Razavi D 46, 47 Rudoy S V 198 Ploner A 134 Reandelar M F 140 Rueda A 127 Plu I 167 Rechenberg-Winter P 121 Ruiz A I 40 Plummer J 63 Recoche K M 138 Ruiz D 169, 203 Plummer J L 165 Reeve J 73 Ruiz Lopez D 86 Plummer S 69 Regnard C 110 Rukhadze T 187, 198 Pohl G M 147 Rehmann-Sutter C 46 Rupacher E 115 Poletti S 79, 137, 177 Reiber T 153 Rurup M 51 Pollkläsener I 75 Reindl T 51 Rurup M L 42, 47, 126, 161 Polo E 107 Reinert E 118 Rusch N C 208 Poniskaitiene M I 102, 198 Reinheckel A R 167 Ruse C 52 Ponte Y 165 Reinvold T K 149 Russell I 56 Pool R 27 Reis T 82 Russell K M 103, 171 Poolman M 151, 152, 187 Reitinger E 166 Russell M 180 Pop B 195 Remacle A 66, 90 Russell S J 69, 200 Pop S 143 Renard M 192 Ruysseveldt I 192 Popa C 113 Renom A 40 Ryan C J 60 Popa-Velea O 27, 124, 162 Requat V 208 Ryan K M 119 Poppelaars J L 47 Requena M L 191 Ryan R 190 Popper L 38, 185 Reske S N 66, 204 Ryan T 116 Porchet F 151 Retschitzegger H 122, 152 S Porta E 79, 141 Rexach L 177, 194 Saarto T 141 Porta-Sales J 85, 110 Rey V 138, 139, 165 Sabatowski R 138 Portela M A 130, 207 Reyes M 122 Sadowski C 195 Portela M d l A 59 Reynaert C 47 Saint Laurent T 191 Portenoy R K 12, 38, 186 Reyners A K L 133 Saito Y 65, 106 Portnoy S 147 Rhondali W 90, 128, 136, 202 Saiz Cáceres F 122, 173 Poulose J V 85 Ribbe M 177, 194 Saji H 200 Pourchet S 45 Ribbe M W 117, 195 Sakashita A 188 Pousset G 51 Ribot T 205 Sakashita Y 106 Powazki R D 103, 171 Richards T 151 Sakata T 106 Powell A J 176 Richardson A 83 Sakiyama H 93, 159, 163 Powell R A 43, 96, 173, 187 Richardson P A 71 Sala R A 151 Poyato E 205 Richmond J 93, 171 Saleem T Z 96 Praßl S 145 Richter U 191 Sales E 133 Index 224 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Index

Sales P 93, 94, 98, 205 Scott I 129 Skeidsvoll T 130 Salminen E K 129, 177 Scott S 195 Skorpen F 34 Saltel P 136 Seamark D 52 Slachmuylder J-L 47 Saltmarsh P 76 Searle R D 204 Slama O 145 Samonigg H 67, 87, 105 Sederskiene V 111 Slatkin N 41 Samoylenko V V 198 Seemann H 155, 176, 206 Sloan R 155 Sampson E 171, 194 Segedin B 85 Small N 52 San Miguel M 207 Sehlen S 121 Smeding R E W 30 San Miguel M T 130 Seidel R 63 Smirnova A I 136 Sánchez J 203 Sela R 124 Smith A 38, 187 Sandblom M 56 Selman L 47 Smith B 158 Sanders C 116 Semper S 159 Smith J 39, 210 Sanders M 71 Semppe R 193 Smith L M 162 Sanderson C 132 Serdiuk V 120, 149 Smith M 191 Sanderson L 98, 172 Serfelová R 142, 169 Smyth H R 148 Sandgren A 159 Serpe R 40 Soares P 137 Sandner-Kiesling A 183 Serpentini S 124 Soden K 186 Sands M B 60 Serrano G 110 Soden K A 162 Sanna P 136 Serrano R 61 Sodha U 45 Sano T 108 Serrano S 107 Sodré J 105 Santos P R N 104, 131 Serraz D 191 Sofia B 165 Sanz A 207 Serret C 138 Solano J P 196 Sapio A 109 Sesana C 210 Soltis M 176 Sarosi A 143 Seskevicius A 162 Sondergaard J 155 Satterwaite H 200 Seydova-Khoshknabi D 127 Sopata M 185, 208 Sauer A 164 Seyidova-Khoshknabi D 145 Sorat M 111 Saunby D 64 Seymour J 77, 78, 80, 116, 182 Soriano V 169 Saunders M 97 Seymour J E 51, 69, 126, 194 Sorour Y 64 Sauter S 87, 198 Shakhurova N 193 Sosars V 198 Savage M 69 Sharma K 56 Southgate S M 168 Savage M D 158 Sharma M 186 Southon J 97 Savoie M 71 Sharma M L 64, 110 Souza V L B 211 Sawinski K 164 Shavdia D M 199 Søvik E M 62 Scaccabarozzi G 210 Shavdia M 100, 106 Sovinz P 113 Scates C 183 Shavdia M D 122, 183, 199 Spaander M 199 Schaider A 46 Shavdia N 106, 122 Spat S 105 Scharnagel R 203 Shavdia N M 122 Speck P 166 Schattner P 48 Sheehy-Skeffington B R 172 Speck P W 30, 31, 32 Scheicht D 120 Sheikh A 50, 73, 156 Spencer S 159 Schele H 189 Shilova O V 44 Speyer F 152 Schestag I 186 Shima Y 87 Spice R 126, 148 Schiepers P 184 Shimada K 188 Spichiger E 208, 209 Schiessl C 186 Shimoyama N 148 Spiga C 108 Schildmann E K 210 Shukkoor A 184 Spinková M 183 Schildmann J 167 Siepmann U 58, 165 Spoon A S 48 Schindler T 198 Siersema P 199 Spruyt O 38 Schippinger W 67, 87, 105 Sigurdardottir K R 62 Srámeková G 142 Schlaeppi M 164 Sigurdardottir V 59, 80, 138, 208 Stadnyuk L 149 Schlemmer M 180 Silva E 105 Stahl M 182 Schliephake H 41 Silva S d P 103 Stahn T 201 Schmidt I 66 Silva S P 211 Stajduhar K I 168 Schmidt T 184 Silvent M A 40 Steeman E 137 Schmincke-Blau I 152 Silvia L 212 Stefanov R P 166 Schneider M 92, 146 Simader R 148 Steineck G 67, 68 Schneider N 49, 197, 199 Simanek R 208 Steinhauser K E 44 Schnell M W 97, 152 Simler N 97 Stelcer B 201 Scholte M 179 Simms V 96, 173, 187 Stempovschi E 120 Scholz A 183 Simms V M 173 Stene G B 34 Schooten K 196 Simon A 20 Stevens A M 179 Schrauwen W 69, 77, 116 Simon S 123, 129, 165, 201, 202 Stevens R J 180 Schroers W 100 Simpkins C 159 Stevenson A 86 Schubert B 150, 203 Simpson S 115, 179 Stewart F 117 Schuetze A 149 Simpson T 97 Steyerberg E 199 Schuler S 205 Sims Gould J 85 Stiel S 41, 47, 137, 142 Schuler U S 88, 150, 203 Simsir S 159 Stiles C 108, 151, 203 Schulz C 97, 152 Singh A 145 Stock D 164 Schulzeck S 140 Sithole N 105 Stockelberg D 78 Schumacher E 150 Sithole Z M 197 Stoelinga W 114 Schürmann R P 203 Sitte T 205 Stoffer-Brink A 43 Schütte K 88, 203 Sittl R 186 Stoll H 208, 209 Schutter U 185 Sives D A 45 Stone C 156, 190 Schwab R 58 Sjøgren P 32, 136 Stone C A 156 Schweigreiter-Moe C 128 Sjöstrand M 161 Stovsky E 71 Scott A C 39, 111 Skale B 56 Strancar K 85 Index 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 225 Index

Strand E 57 Tomaszewska E 208 van der Heide A 27, 154 Strand L-I 58, 117, 138 Tomé M M 84 van der Poll A 179 Strasser F 34, 40, 49, 50, 60, 130, 199, 211 Tong F 147 Van der Rijt C C 107, 136 Streinerte B 198 Tookman A 90 van der Rijt C C D 98, 157 Strohbuecker B 193 Torlinski L 97, 195 van der Steen J T 19, 117, 195 Strohscheer I 36, 63, 94, 113, 166, 183 Torres A 185, 209 van der Velden L-A 199 Stuck P 105 Toya Y 206 van Dijk H 157 Stypula-Ciuba B 89, 111 Tracey G 143 Van Dooren S 136 Su C 41 Trasciatti S 117 Van Gysel M 195 Suchner U 203 Traue D 102 van Leeuwen J T M 133 Sueta T 106 Treacy P 76 van Minnen C A 133 Sugiura K 200 Trelis i Navarro J 102 Van Mulders K 111 Suija K 179 Tres A 107 Van Noorel A 140 Sukegawa A 200 Treston P M 152 Van Rumste B 184 Sustic A 98 Trevena T L 150 Van Tol C 140 Sutherland J 149 Tribout D 133 van Veluw H T M 157 Sutherland J L 61, 182, 183 Tripodoro V 75, 164 Van Wesemael Y 157 Suzuki T 207 Tritthart H 166 van Zuylen C 98, 157 Swann D 56 Trombini L R B 104, 143, 144 van Zuylen L 27 Sykes N 155, 172 Trotman I 45, 128, 141 Vanapalli H B 86 Syrjänen K 129 Trottenberg P 34, 40 Vanbeek K 47 Szadek K M 140 Trudel M 190 Vander Stichele R 125, 199 T Trujillano J 212 Varani S 200 Taal W 107 Trujillo R 127 Varela Cerdeira M 86 Tagarro I 107 Tryphonos A S 149 Varela M C 191 Takamiya Y 188 Tsarenko A 120, 149 Vedder A E 178 Takase H 106 Tsilika E 169 Vedder R 190 Takei D 207 Tsimafeyeu I 146 Vedsted P 58 Takinishi Y 188 Tsirulnikov E M 136 Vega F 49, 138, 139 Tallon C 155, 172 Tsonioti M 180 Vega Y 119 Tambu A 124 Tsouros A 116 Vejdin A 56 Tan B 130 Tsuchiya S 188 Vejlgaard T 63 Tan B H L 34 Tsuneto S 87, 108, 205, 206 Velasco I V 139 Tan H 48 Tuca A 110, 125, 211 Velghe A 116 Tan J 164, 167 Tuca-Rodríguez A 85 Verdaguer M 119 Tanca F M 108 Tucker T 161 Verhagen S 82 Tanimukai H 108, 205, 206 Tuffrey-Wijne I 121, 157 Vernooij-Dassen M 79 Taranger M 163 Tulsky J A 44 Veronese S 173 Tasmuth T 141 Tupper L 123 Vescovali N 167 Taubert M 110, 176 Turkadze M 187 Veterovska Miljkovik L 206 Tavares F C 137 Turner J 124 Vicario F 79, 137, 177 Taylor D 38, 130, 186 Turner M 44, 176 Vicente F 57 Taylor D R 38, 186 Tutungi M 82, 210 Vidal M J 107 Taylor J 155 Tymon J 43 Vidaurreta R 169 Taylor R 200 Tysoe-Calnon V A 185 Vignaroli E 49, 138, 139, 165 Tchaykovska V 149 U Vignola V 141 Teglkamp K 185 Ubogagu E A 95 Vignotto F 154 Teixeira S 211 Uejima E 206 Villa-Cornejo B 182 Telfer R 179 Ui Dhuibhir P 74 Villaroel L 123 Tella M 185 Uitdehaag M 199 Villarroel L 137 Teneza M D T 140 Urago C P 131 Villegas E 185, 209 Teunissen S 56 Urdiroz J 59, 207 Vinhas F 180 Thai V 98, 172 Urpis M 108 Vinhas F R 132 Thanakrishnan G 164 Uyttebroeck A 192 Vintoniv V 104 Thebo Z 141 V Violato C 126, 148 Thijs G 153 Vaitkevicius P 52 Visser M 153 Thomas B M 161 Valdes Gomez C 177 Vissers K 47, 82, 101, 163, 182, 198 Thomas C 99 Valdimarsdottir U 68 Vissers K C 100, 153 Thomas H 210 Valentín R 91, 122, 173 Vissers K C P 148 Thomas K 28, 90, 156, 161 Valentine Gray D 76 Vogelaar P 151 Thompson G 117 Vallath N 197 Vollenbroich R 193 Thompson K J 207 Valle A 173 Vollmann J 167 Thöns M 133, 170 Vallina Blanco P 177 Voltz R 27, 28, 47, 88, 89, 94, 96, 119, 120, Thoonsen B 163 Van Beek K 30 160, 162, 174, 193, 204 Thulesius H 159, 161 Van Beek K A 182 von Gunten C F 32 Thuné-Boyle I 194 van Beek K A L 100, 153 von Schoenebeck X 181 Thürlimann B 164 Van Bragt J 153 Vora V A 188 Tierney S 161 van den Block L 80 Vuagnat H 127 Tishelman C 134 Van den Branden S 88, 171 Vvedenskaya E S 44 Titkov E S 136 Van den Eynde J 188 Vyhnalek B 180 Tobeña M 107 Van den Eynden B 148, 153 Vyzula R 145 Todd A M H 39 Van Den Noortgate N 69, 77, 116, 177 W Todd J 42 Van Den Noortgate N J 137, 194 Wadhwa D 109, 110 Tomaszewicz E 89, 111 van der Breggen J M 154 Wagner A 139 Index 226 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 Index

Wajda B 175 Wisniewski P 131 Waldron D 128, 143, 205 Witkamp F E 136 Walisko-Waniek J 160 Woitha K 30, 47, 100, 148, 153, 182 Walker P W 146 Wolch G 98 Walker S 86 Woldberg H 151 Wallace E M 65, 142 Wolf J 119, 120 Wallace M S 186 Wolfe J 52 Walsh A 175 Wolff A 82 Walsh D 42, 67, 103, 127, 145, 171, 180, 210 Wollner D I 175 Walshe C 33, 175 Wood F 115 Walther-Veri S 136 Wood J 180 Wang W 41 Wood L 44 Wanrooij B S 43 Woods D 39 Wappelshammer E 118 Wordliczek J 108, 207 Ward J 42 Woron J 108, 207 Waselewsky D 52, 86, 145 Worstall C 176 Wasner M 28, 92, 121, 162, 201 Worth A 50 Wasteson E 34, 41 Wren T 144 Watanabe S 108, 139, 206 Wright D 121, 195, 206 Waterhouse E T 128 Wright D N M 129 Waterman D 100, 212 Wright J 64 Watling M 38, 187 Wu P 191 Watson J 117 Wulp M 150 Watson J E 196 Wüstner A 127 Watzke H 48, 58, 84, 147 Wyant A 145 Watzke H H 81 Wysocka E 97, 195 Weaver L 70, 74 X Webber K 130, 200 Xherahu O 176 Weber C 127 Y Weber L 113 Yagüe A 169 Weber M 58, 165 Yai C-Y 71 Wedding U 59 Yamada S 108 Wedenby C V 203 Yamamoto Y 108 Wee B 95, 130, 207 Yamano T 106 Weel van C 79 Yan N 41 Wegleitner K 119, 178 Yasuda S 206 Weinstein S M 38 Yates P M 150 Weissenberger-Leduc M 118 Yatskevich K V 174 Wells S L 150 Yomiya K 207 Welton M 69 Yordanov N R 91, 166 Wenk R 49, 138, 139, 165 Young B 180 Wenzel C 93, 162 Young I 39 Werdin A-C 56 Yu J 159 Werni M 155 Yue G 145 Werni-Kourik M 49, 69, 176, 206 Yushchyshyn A 124 Westlake-Tritton J 158, 159 Z Westrich A 180 Zafar S Y 63 Wheeler J L 39, 63 Zagorski B 92, 161 Whitfield A 210 Zalenski R 52, 86, 145 Whyte D 151 Zamora Catevilla A 81, 87 Whyte G 210 Zamora Mur A 81, 87 Widdershoven G 47 Zanini K 151 Wiersma E 85 Zdrahal F 69 Wiese C H R 206 Zenz M 133, 170 Wieser C 128 Zernikow B 153 Wighton E 142 Zhukovsky D 38 Wijk H 168 Ziaková K 142, 169 Wilberg P 160 Zink M 128 Wilbur S 176 Zoëga S 208 Wilcock A 39 Zoetemeijer M K 136 Wilderspin N 45 Zottele P 164 Wilkinson R 190 Zulian G 127 Willett T 74 Zulian G B 199 Williams C 73 Zuriarrain Reyna Y 190 Williams E M I 78, 158, 204 Zuurmond W W A 140 Wilson K 78, 195 Wilson K G 91 Wilson L 168 Windus M-J 160 Winslow M 204 Wiredu E 163 Wirnsberger C 128 Wiseman J 61 Wiseman T 83 Index 11th Congress of the European Association for Palliative Care, Vienna, Austria, 7–10 May 2009 227 EAPC ONLUS

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Research Forum of the European Association for Palliative Care

GLASGOW, UK 10–12 JUNE 2010 www.eapcnet.org/research2010 5717SM_Relistor_297x210 30/1/09 10:39 Page 1

A targeted approach that reverses opioid-induced constipation

RELISTOR is the only peripherally-acting mu-opioid receptor antagonist that: Specifically targets the underlying cause of opioid-induced constipation (OIC)1 Has no impact on central opioid analgesia1 Acts promptly to reverse OIC2

www.relistor.co.uk

ABBREVIATED PRESCRIBING INFORMATION and Precautions: Should not be used for treatment of patients with constipation not related Adverse events should be reported. Reporting forms Before prescribing Relistor® please refer to full Summary of Product Characteristics. to opioid use. If severe or persistent diarrhoea occurs with treatment, patients should be Presentation: Relistor 12 mg/0.6 ml solution for injection. Each vial of 0.6 ml contains advised not to continue therapy and consult their doctor. Treatment can result in rapid onset and information can be found at www.yellowcard.gov.uk. 12 mg methylnaltrexone bromide. One ml of solution contains 20 mg methylnaltrexone (within 30-60 minutes) of a bowel movement therefore patients should be made aware and Adverse events should also be reported to Wyeth bromide. For subcutaneous injection. Uses: Treatment of opioid-induced constipation in be in close proximity to toilet facilities. Methylnaltrexone has not been studied in clinical trials Pharmaceuticals on 0845 367 0098. advanced illness patients who are receiving palliative care when response to usual laxative for longer than 4 months, and should therefore only be used for a limited period. Relistor therapy has not been sufficient. Dosage: For adults only. Relistor should be added to induce should only be used in patients who are receiving palliative care and added to usual laxative References: 1. Relistor 12mg/0.6ml solution for injection. Summary of Product prompt bowel movements when response to usual laxative therapy has not been sufficient. treatment. Not recommended in patients with severe hepatic impairment or with end-stage Characteristics, July 2008, Wyeth Europa Limited. 2. Thomas J et al. New Eng J Med The recommended dose is 8 mg (0.4 ml) (for patients weighing 38-61 kg) or 12 mg renal impairment requiring dialysis. Use in patients with colostomy, peritoneal catheter, active 2008; 358 (22): 2332-2342. (0.6 ml) (for patients weighing 62-114 kg). Patients whose weight falls outside of the ranges diverticular disease or faecal impaction has not been studied. Therefore, should only be quoted should be dosed at 0.15 mg/kg. The recommended administration schedule is one administered with caution in these patients. Pregnancy and Lactation: Should not be Date of preparation: January 2009 single dose every other day. Doses may also be given with longer intervals, as per clinical used during pregnancy unless clearly necessary. The decision on whether to ZMTX297 need. Patients may receive two consecutive doses 24 hours apart, only when there has been continue/discontinue breast-feeding or to continue/discontinue therapy should take in to no response (bowel movement) to the dose on the preceding day. Renal patients: account the benefit of breast-feeding to the child and the benefit of Relistor therapy to the In patients with severe renal impairment (creatinine clearance <30 ml/min), the dose should woman. Effects on ability to drive and use machines: Dizziness may occur. be reduced to 8 mg (0.4 ml) for those weighing 62-114 kg, and to 0.075 mg/kg for those Undesirable Effects: Very common (≥1/10): abdominal pain, nausea, flatulence and whose weight falls outside of the 62-114 kg range.There are no data available from patients diarrhoea. Common (≥1/100, <1/10): dizziness, injection site reactions (e.g. stinging, with end-stage renal impairment on dialysis, and methylnaltrexone is not recommended in burning, pain, redness, oedema). Legal Category: POM. Package Quantities: Cartons these patients. Hepatic impairment: Mild to moderate hepatic impairment – no containing: 1 x 0.6 ml vial, or 7 x 0.6 ml vial kit with 7 x 1 ml injection syringes with adjustment necessary. Severe hepatic impairment (Child-Pugh Class C) – no data available, retractable needle and 14 x alcohol swabs. Basic NHS Cost: £21.05 – 1 x 0.6 ml vial, and methylnaltrexone is not recommended in these patients. Paediatric patients: Should £147.35 – 7 x 0.6 ml vial. European Marketing Authorisation Number(s): not be used in children under 18 until further data is available. Elderly patients: No dose EU/1/08/463/001; EU/1/08/463/003. For full prescribing information and details of other adjustment recommended. Administration: Rotate injection site. Not recommended to side effects see Summary of Product Characteristics. Full prescribing information is 12mg/0.6ml solution for subcutaneous injection inject into areas where skin is tender, bruised, red or hard. Scars or stretch marks should be available on request from: : Wyeth Pharmaceuticals, Huntercombe Lane South, Taplow, avoided. Contraindications: Hypersensitivity to the active substance or excipients. Known Maidenhead, Berkshire SL6 0PH. Tel: 0845 367 0098. Date of Prescribing Information: or suspected mechanical gastrointestinal obstruction or acute surgical abdomen. Warnings 04 July 2008 Code no. ZAPI083 Doc ID 48683 Targeted Prompt Relief