EAPC ONLUS

Abstracts of the 9th Congress of the European Association for (EAPC) Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs

Aachen, Germany, 8–10 April 2005 Aix la Chapelle, Allemagne, 8–10 avril 2005

ABSTRACTS RÉSUMÉS

EAPC Instituto Nazionale Dei Tumori Via Venezian 1 20133 Milano ITALIA Tel: +39 02 2390 3390. Fax: +39 02 2390 3393. email: [email protected] www.eapcnet.org

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Cover picture: View of the Hague by Pieter Gerard Vertin (1819–1893)/ Bridgeman Art Library Couverture: View of the Hague par Pieter Gerard Vertin (1819–1893)/ Bridgeman Art Library

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 i Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 ii Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Scientific Committee CONTENTS Stein Kaasa, Norway, Chair Lukas Radbruch, Germany, Co-Chair Eduardo Bruera, USA Friday 8 April 2005 David Clark, UK Franco De Conno, Italy ABSTRACTS OF INVITED LECTURES Marilène Filbet, France AND ORAL PRESENTATIONS 3 Katalin Hegedus, Hungary Phil Larkin, Ireland ABSTRACTS OF POSTERS 17 Friedemann Nauck, Germany Sheila Payne, UK Saturday 9 April 2005 David Praill, UK

Advisory Board to the ABSTRACTS OF INVITED LECTURES Scientific Committee AND ORAL PRESENTATIONS 47 Julia Addington-Hall, UK Johann Baumgartner, Austria ABSTRACTS OF POSTERS 60 Snezana Bosnjak, Croatia William Breitbart, USA Sunday 10 April 2005 Bert Broeckaert, Belgium Cristian Juul Busch, Denmark ABSTRACTS OF INVITED LECTURES Nathan Cherny, Israel AND ORAL PRESENTATIONS 91 Nessa Coyle, USA Kathleen Foley, USA ABSTRACTS OF POSTERS 105 Carl Johan Fürst, Sweden Paul Glard, Australia Index Richard Hain, UK Geoffrey Hanks, UK BY AUTHOR 135 Jo Hockley, UK Christoffer Johansen, Denmark Martina Kern, Germany Eberhard Klaschik, Germany Jacek Luczak, Poland Marco Maltoni, Italy Sebastiano Mercadante, Italy Tatsuya Morita, Japan Monika Müller, Germany Katalin Muszbek, Hungary Mildred Solomon, USA Juan Manuel Nuñez Olarte, Spain Margaret O’Connor, Australia Antonio Pascual Lopez, Spain Jose Pereira, Canada Joseph Porta I Sales, Spain Sylvia Sauter, Sweden René Chaerer, France Per Sjøgren, Denmark Jan Tjernsward, Sweden Floria Strasser, Switzerland Corry Van Tol, the Netherlands Charles F Von Gunten, USA Annette Welshman, UK Furio Zucco , Italy

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 iii Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 iv Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 FRIDAY 8 APRIL 8 FRIDAY

ABSTRACTS OF INVITED LECTURES, ORAL PRESENTATIONS AND POSTERS

8 APRIL 2005

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

2 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 1 Abstract number: 3 Abstract number: 5 Presentation type: Invited Presentation type: Invited Presentation type: Invited Poster number: Poster number: Poster number:

Curriculum for Palliative Nurse Education “Palliative care – an international Pharmacogenetics – does it perspective – the observatory”. matter clinically? Phil Larkin, Dept. Palliative Medicine, Galway, IRELAND, Françoise Porchet, Centre Hospitalier Carlos Centeno, Hospital Los Montalvos, Lukas Radbruch, Department of Palliative Universitaire Vaudois CHUV, Lausanne, Salamanca, Spain Medicine, University of Aachen, Germany SWITZERLAND In this session we are going to explain the four The recommendations of the expert working

As part of the EAPC TASKFORCE Strategy on lines of work of the EAPC Task Force on group of the European Association for Palliative APRIL 8 FRIDAY Education, a taskforce was identified to prepare development of Palliative Care in Europe: Care (EAPC) has evaluated the level of evidence guidelines that would provide a framework for of the available . Summarizing this palliative nurse education in Europe. This a) Literature review and summary of any evaluation, the efficacy of opioids is well document, recently published by the EAPC, published work about the development of proven. and other opioids of the offers a plan of action for centres who wish to palliative care in each of the countries. This WHO-steps 2 and 3 are effective for the pursue the development of palliative nurse job is mainly carried out by Javier Rocafort treatment of cancer . education and highlights key considerations, with the help of Anthony Greenwood. With the increasing number of available skills and competencies and identifies the b)International survey to boards of the National opioids and application forms individual supportive and inhibitory factors to sound Associations of Palliative Care, seeking differences in the efficacy of these opioids have education for nurses. opinions about the general situation, led to the opinion that the indication for In this workshop, a brief overview of the key strengths and opportunities for palliative care opioids and specific application routes should recommendations will be given, followed by in their country. be decided for the individual patient in the the opportunity for audience participants to c) International survey to an expert within each specific setting. The rationale for this share their experiences of organizing, country, to gather concrete data about the differentiated approach is found in individual facilitating and evaluating education initiatives, state of palliative care service delivery and differences in the efficacy of different opioids, as well as sharing the reality of education for organization in the country. differences in the side effect profile, efficacy nurses within the European context. d)Research on the national Directories of with different pain syndromes such as Services, whether published, printed or neuropathic pain or breakthrough pain, and online. differences with organ dysfunction or failure Abstract number: 2 Also, the present state of the study and our such as renal or hepatic insufficiency. Presentation type: Invited upcoming plans will be explained. With the introduction of new slow release Poster number: application forms in the last years differences in the side effect profile have been postulated. Less Palliative care – an international Abstract number: 4 constipation with transdermal , lower perspective: the work of the International Presentation type: Invited incidence of neurotoxic side effects with Observatory on End of Life Care Poster number: and lower risk of respiratory depression with have been David Clark, International Observatory on End Opioids pharmacogenetics – does it postulated. Buprenorphine might be of Life Care, Lancaster, GREAT BRITAIN matter clinically? advantageous in renal impairment, as part of the drug is excreted through bile and gut. Founded at Lancaster University in 2003, the Pal Klepstad, Dept. Intensive Care Medicine, Fentanyl or could offer advantages International Observatory on End of Life Care is Trondheim, NORWAY for patients with hepatic impairment. The non- the first ever research and development project opioid activities of some opioids, especially the to concentrate on the comparative analysis of Variability of opioid efficacy caused by genetic reuptake inhibition of monoaminergic hospice and palliative care around the world. variations has been recognized for several years. transmitters and the NMDA-antagonism, have The Observatory is unique in being focussed The most established clinical significant genetic been considered as advantages of and solely on end of life care and in its emphasis on variability is related to the CYP2D6 enzyme methadone for neuropathic pain. a social science perspective. The aims of the metabolizing to morphine. Slow Using evidence-based criteria, these theses Observatory are: 1. To provide clear and metabolizers of codeine produce less morphine must remain under discussion. It remains accessible research-based information on and have a less pronounced effect unclear, whether data from animal pain models hospice and palliative care provision in the from codeine. Genetic variability has also been or healthy volunteers can be transferred to international context, incorporating shown to influence on the efficacy of opioids cancer patients. An individually adapted opioid ethnographic, historical and ethical for moderate to severe cancer pain such as therapy, taking pain syndrome, receptor status perspectives as well as health care systems morphine. This genetic variability may be and patient metabolism into account, remains a analysis 2. To disseminate this information complex. This complexity of genetic variability vision for the future. Until then, differential use through the Observatory website and through is illustrated by the interplay of genes coding of opioids will be more trial and error than published articles, monographs, reports, CDs morphine metabolism, genes coding the mu- evidence-based, and opioid rotation will remain and other media, in ways that facilitate cross- , genes coding morphine a valuable tool if the opioid chosen by the national comparative analysis and stimulate transport through the BBB and genes coding physician fails. practical development 3. To undertake primary modifying non-opioid systems. All these research studies and reviews to generate such candidate genes are shown to influence on the information. 4. To support academic work clinically needed morphine dose. However, also Abstract number: 6 relating to the aims of the Observatory in in the presence of such evidence it is still Presentation type: Invited resource poor regions 5. To work in partnership relevant to ask if this matter clinically. If the Poster number: with key organisations and individuals, needed dose is variable the clinical nationally and internationally as a ‘community consequence is simply that we will have to Outcomes in palliative care research of effort’ for the global improvement of end of perform an appropriate titration of the opioid. in the clinic life care This session will provide an While this is true I will still argue that it is opportunity to learn more about the developing important for clinicians to be aware of the Stein Kaasa, Department of Cancer Research programmes of the Observatory. Prior to pharmacogenetic variability in respect to opioid and Molecular Medicine, NTNU, Trondheim, attending, please visit the Observatory website: efficacy. This knowledge will give a theoretical Norway, Christoph Ostgathe, Klinikum der http://www.eolc-observatory.net foundation for recognizing that patients are Universität zu Köln, Köln, Germany different in respect to the dose needed for pain relief. As a consequence opioids must be titrated Over the past decades palliative care has with respect to effect, not to some limit in terms developed dynamically in Europe and care for of an absolute amount of drug. Furthermore patients with far advanced diseases has genetic studies may in the future explain the improved – without reaching a status of basis for the interindividual variable effect from sufficient provision in most countries. In spite different opioids. Such knowledge can give the of many challenges of methodological, ethical, clinicians the rationale explaining improved economical, size of samples, etc. the amount of pain relief or less adverse effects following a palliative care research has increased over the change in the opioid substance. past decade. Within medicine in general there is a call for more scientific evidence to build clinical decisions upon. This challenge also applies for

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 3 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

palliative care. In the process of designing both ‘Terminal’ or ‘palliative’ sedation in palliative Abstract number: 12 clinical research as well as quality assurance – care must be distinguished from euthanasia. Presentation type: Invited audit programs, outcomes must be defined. The This has been pointed out in the EAPC Task Poster number: focus in palliation is symptom control, Force position paper where the main improvement of quality of life, family differences to euthanasia were clarified. Indications, guidelines, documentation, satisfaction, place of palliative delivery, etc. In Relating to the principles and further research in the Use of Sedation this session the experts will give a short recommendations of the EAPC Task Force overview of the existing literature and our position paper can help to locate the Nathan Cherny, Shaare Zedek Medical Center, experience in choosing outcomes in the clinic. appropriate place of sedation in end-of-life care Jerusalem, Israel There will be time for discussion on which and diminish misuse or moral prejudices. With outcomes to be considered as most appropriate respect for personal needs the terminology, The use of sedation in the relief of symptoms at and other related areas. intentions, aims and indications for sedation in the end of life is potentially open to abuse. palliative care will be discussed in this session Indeed, some physicians administer doses of with regard to medical and non-medical medication, ostensibly to relieve symptoms but Abstract number: 9A indications, decision-making, further research with a covert intention of hastening the Presentation type: Invited and ethical implications. The following topics patient’s death. There is strong data from the Poster number: will be reflected: 1. Can we find a common Netherlands, Australia and the United States language when we discuss terminal or palliative indicating that this practice is not uncommon. Can we find a common language when we sedation? (Christof Müller-Busch) 2. Sedation in Various institutions, individuals and expert discuss terminal or palliative sedation? palliative care and euthanasia – different clinicians have developed guidelines for the settings, different approaches, different appropriate implementation of sedation. Dr H. Christof Müller Busch, Dept. of Anesthesia, intentions (Bert Broeckaert) 3.Sedation in Simon Wein (2000) described 9 criteria: 1. The Pain Therapy and Palliative Care, Berlin, terminal stages of intolerable suffering – moral illness must be irreversible and advanced with GERMANY obligation or slippery slope. What are the death imminent. 2. The symptoms need be limitations? (Philippe Poulain) 4. Indications, determined to be untreatable and refractory by All definitions have three parts: term being guidelines, documentation, further research other means. 3. The goals of care must be clear. defined, classification and identifying (Nathan Cherny) 4. Informed consent from the patient (direct, characteristics. The terminological problems living will, advanced directives); or by proxy, with sedation near death reflect different must be obtained. 5. Corroborative consultation viewpoints and attitudes among clinicians and Abstract number: 10 should be sought. 6. The staff should be palliative care experts: “sedation for intractable Presentation type: Invited involved and informed as appropriate. 7. The distress in the imminently dying”, “end-of-life Poster number: family should be involved as guided by the sedation”, “slow-euthanasia”, “palliative patient’s wishes and clinical condition. 8. Full sedation”, “total sedation”, “sedation in the Palliative sedation and euthanasia – documentation of clinical condition and final phase”, “palliative sedation therapy” a.s.o. different settings, different approaches, medication. 9. Agreement must be undertaken The ambiguous term “terminal sedation” (TS) is different intentions that CPR will not be initiated. A Canadian used most often. Helpful for a starting point is a Clinical Practice Guideline Canada (2003) technical description: “Sedation in the terminal Bert Broeckaert, Belgium describes 4 basic criteria: 1) A terminal disease or final stages of life can be defined as the use of exists, 2) The patient/client suffers from a medications (usually benzodiazepines with or In a considerable number of terminal patients refractory symptom/s, 3) Death must be without complementary opioids given by the palliative sedation still remains necessary to imminent (within days) and 4) A do not intravenous or by the subcutaneous route) to control a number of refractory symptoms resuscitate order must be in effect. If these reduce the level of consciousness sufficiently (dyspnoea, delirium, etc.). For many working in criteria are met, then a 5 step process is set in deep to provide comfort for the patient until palliative care, palliative sedation has nothing to progress: 1) The attending physician must death occurs.” The implementation of do with euthanasia. Indeed, as most intense and ensure the patient is assessed by a physician guidelines will be facilitated, when different ultimate form of pain and symptom control, it expert in symptom management. 2) The forms, technical details, procedural intentions is, according to this position, radically different attending physician, based on the and circumstances of TS (in those imminently from euthanasia. Moreover, as it is capable of recommendation and advice from a physician dying) are identified and characterised. There is adequately addressing refractory symptoms expert in symptom management shall consult broad consensus that the indication for (physical, psychological, existential) and thus directly with the patient and family and as sedation in patients near death is the control of efficiently easing unbearable suffering, it makes appropriate with the other care providers intolerable and by other means refractory euthanasia superfluous. Others, however, see regarding the option of palliative sedation. 3) If physical and/or psychological symptoms. But sedation very differently. For them sedation is the option of palliative sedation is selected by controversies exist on the aims and intentions nothing but ‘slow euthanasia’: a disguised, the patient or ‘agent’, the attending physician of TS with relation to the quality of dying. hypocritical and barely humane form of must ensure the discussion by which the Different forms of sedation in end-of-life care euthanasia or ending of life. consent is obtained. 4) Once consent is can and should be identified by a generally In this paper a number of important obtained for palliative sedation, the physician accepted terminology. Sedation in palliative discussions on sedation and euthanasia are expert in symptom management will arrange care should be distinguished clearly from critically reviewed: the early debates in Journal for palliative sedation and appropriate euthanasia. of Medical Ethics (1994–1995) and in Journal of monitoring of the patient. 5) All of the above Palliative Care (1996), the Vacco v. Quill U.S. must be documented on the health record. supreme court case (1997), the role of sedation Abstract number: 9B in the Belgian euthanasia debate (1999–2002) Presentation type: Invited and the recent Dutch controversy in which the Abstract number: 13A Poster number: practice of sedation is accused of being a way of Presentation type: Invited circumventing the strict euthanasia regulations. Poster number: Sedation in palliative care – an update Conceptual clarifications and empirical data, i.e. the result of a large-scale multi-centered 1. The position of volunteers in the field of H. Christof Müller Busch, Depy. of Anesthesia, Belgian study on sedation in palliative care palliative care Pain Therapy and Palliative Care, Berlin, units (2002–2005), are used to discuss the GERMANY relationship between euthanasia and sedation. Hans A.J. Bart, Director of the National Centre, Clear and fundamental differences between Bunnik, NETHERLANDS The use of sedation in terminally ill patients has palliative sedation and euthanasia are shown to been investigated by a number of studies in exist, though it is recognised (and regretted) In 2003 the National Centre gave the recent years. The problems associated with that in clinical practice the border between the commission to the research institute IVA to do sedation in end-of-life care as well as different two is sometimes knowingly but secretly research under clients about the satisfaction viewpoints and attitudes among clinicians and crossed (hence the confusion) and though the with the volunteers in palliative care. On a 10 palliative care experts are reflected in recognition of these fundamental differences point scale the clients gave a 8,7 for the work of inconsistent terminology. There is much debate does not make sedation ethically totally the volunteers. They add something that in this about where to draw the borderline between unproblematic nor necessarily an acceptable combination only can be given by volunteers – sedation for refractory symptoms that are of a option for those advocating or demanding personal contact, emotional involvement and mainly physical/somatic nature and for those euthanasia. support, time and attention, practical support. psychological symptoms that are mainly due to Our 6,000 volunteers are active in giving care to existential suffering. In the last years an terminal ill patients and their relatives from the international consensus group has investigated perspective of “Being There”. They are all and discussed sedation in end-of-life care with trained on local and national level (yearly the intention to facilitate recommendations. 75–80 programs for 1100 trainees) in subjects

4 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

like communication, loss and bereavement, commission for this research project. I send a the elderly and combat the numerous dilemmas as a volunteer, spirituality and beliefs, letter to Mr. Kaasa and Mr. Radbruch (27-9- challenges. Key approaches include the use of etc. As a volunteer they are professional but 2004) with the request to be chair for the simple age appropriate measurement scales, they don’t take over the work of the subject. providing written instructions concerning professional caregivers. They work in home drug use (dose, route, frequency, use in situations as well as in almost-like-home houses relation to food, common side-effects). Careful and hospices. VTZ was one of the initiators on a Abstract number: 13D recording of changes in medication profile and statement about volunteers in care. A statement Presentation type: Invited physical checks on compliance. Nursing that was signed by 13 national organisations for Poster number: education is vital. volunteers in care like the Dutch National Red Cross, Salvation Army, etc. with a total of 4. Almost-like-home houses,

150,000 volunteers. a Dutch concept Abstract number: 18 APRIL 8 FRIDAY A recent report from our national Social- Presentation type: Invited Cultural Institute (SCP) shows that 80% of the Hans A.J. Bart, Director of the National Centre, Poster number: Dutch population thinks that in the future Bunnik, NETHERLANDS, Ingrid Versteeg, handicapped people and persons with serious National Centre Volunteers in Palliative Care, Pharmacological treatment of pain in old illnesses will have to depend more on family, Bunnik, NETHERLANDS and frail palliative care patients: is there a friends and other informal caregivers. In that base for evidenced based medicine? perspective it’s very important to be aware of The concept of the almost-like-home houses is the position of the volunteers and give them from Dutch origin. These houses are hospice Sebastiano Mercadante, Pain Relief and the opportunity to be a volunteer and not an facilities that can provide the same care as in Palliative Care Unit, La Maddalena Cancer underpaid professional. What can you expect the home situation. They are run by volunteers, Center, Palermo, Italy and what may you expect from the support of who offer support to the patient and his/her volunteers? next of kin. The nursing care is provided by Pain is more common with higher age, the district nurses. The general practitioner is prevalence ranging 40–79% among patients responsible for the medical care. These houses aged 85 years and above. Pain has been found to Abstract number: 13B are locally based and funded, small (3–5 beds) be associated with functional limitations, Presentation type: Invited and as an volunteer organisation they want to fatigue, sleeping problems, depressed mood and Poster number: give the patient and their relatives a quality of life. Despite this body of evidence, surrounding as normal as like home – not outcomes studies are lacking and attention to 2. Cooperation between volunteers and institutionalized or emphasizing a medical principles of caer as they apply to this particular professionals in palliative care surrounding. There is also from the UK interest population is advised. in this concept. I send a letter to Mr. Kaasa and According to recent guidelines, Hans A.J. Bart, Director of the National Centre, Mr. Radbruch (27-9-2004) with the request to pharmacotherapy continues to be the mainstay Bunnik, NETHERLANDS, Nynke Wilbrink, be chair for the subject. of treatment to control pain in older patients. National Centre Volunteers in Palliative Care, Patients’ experience and response to drug Bunnik, NETHERLANDS therapy is unique and individualize assessment Abstract number: 17 that incorporates an analysis of the patient’s There is a clearly defined distinction between Presentation type: Invited physiological status (co-morbidity and the professional and the volunteer when you Poster number: concurrent drug prescriptions), determination talk about the activities that are restricted to of realistic goals, and monitoring of outcomes the professionals. This distiction is not so clear The Clinical Challenges of Pain on a regular basis could provide the best when you talk about the daily care from person Management in the old palliative balance between risks and benefits of analgesic to person. The volunteers can do the same care patient pharmacotherapy. It is a reasonable activities as the closely related friends and expectation that most serious pain can be family but they are not always entitled to that. Declan Walsh, The Cleveland Clinic significantly mitigated. Elderly patients may On the other hand they are, like the family and Foundation, Cleveland, Ohio, USA experience a similar level of pain intensity but friends, the most time near the patient and require a lower amount of than know sometimes more about the mental and Sixty-five per cent of cancer occurs in people younger adults. A key to success in the spiritual condition of the patient. How can over the age of 65 years. In addition a variety of application of pharmacotherapy in geriatric they cooperate to make the last phase of life a painful conditions are common in elderly pain management is slow, careful titration of good time for the patient and his/her relatives? people, e.g., post herpetic neuralgia or occur as drugs with specific subjective and objective You have to overcome discussions about co-morbidities in elderly cancer patients. Pain is end-points, while anticipating, preventing, and authority and competence. This issue has to be a common complaint with increasing age and treating adverse effects. Patients who are dealt with in the home situation as well as in provides multiple challenges to the prescribing experiencing severely debilitating pain require hospice care. I send a letter to Mr. Kaasa and physician. more rapid titration and necessitate hospital Mr. Radbruch (27-9-2004) with the request to The challenges may be considered to exist in admission for close monitoring of safety and be chair for the subject. the following areas: efficacy of therapy. 1) pain assessment 2) drug compliance Abstract number: 13C 3) co-morbidities Abstract number: 19 Presentation type: Invited 4) poly-pharmacy Presentation type: Invited Poster number: 5) pharmacokinetics Poster number: 6) drug side-effects 3. Volunteers in palliative care at home 7) pharmacodynamics Clinical pharmacological aspects of Pain assessment in the elderly is complicated non-steroidal anti-inflammatory drugs Hans A.J. Bart, Director of the National Centre, by practical, cognitive, cultural and educational (NSAIDs) in the elderly person Bunnik, NETHERLANDS, Meralda Slager, issues. Drug compliance is a challenge because National Centre Volunteers in Palliative Care, of the influence of family members, failing Ola Dale, Department of Anesthesiology, Bunnik, NETHERLANDS memory, and physical infirmity. Co-morbidities Trondheim, Norway which effect brain, heart, lung, kidney, and liver The National Centre has figures over the last ten function are frequent in the elderly. In addition NSAIDs and paracetamol are Step 1 drugs on years about the support of volunteers in the aging process is associated with extensive WHO analgesic latter. NSAIDs are effective for palliative care in the home situation. We saw physiological changes which significantly mild to moderate pain. They have no abuse over the last years an increasing number of influence the pharmacokinetics of many potential, are widely available throughout the volunteers who helped an increasing number of commonly prescribed drugs, e.g., changes in world, also as over the counter (OTC) drugs, patients. In 2003 there was a decrease of body fat and water, cardiac reserve. The number and finally cheap NSAIDs are on the market. support in the home situation and a strong of medications (prescribed and self However, NSAIDs are not trivial drugs. Their increase of number of patients in hospices. We administered) increases rapidly in individuals mechanism of action is through inhibition of know that most people want to die at home and over 55 years. This raises practical problems of prostaglandin synthesis. Prostaglandins are this change has nothing to do with the quality poly pharmacy and significant issues of drug involved in homeostatic regulation of vital of the care at home. So what policy and other interactions and drug side-effects. The elderly body functions such as organ circulation, factors contributed to this change? What can we are at increased risk of drug side-effects coagulation, salt/water balance and gastric do to let people die in the place they prefer? particularly from cardiovascular and mucosa protection. This explains the severe There is also research done (ready in March neuropsychological drugs. adverse effects of NSAIDs. Since they act on 2005) to the decision process about the place Despite the complexities much can be done homeostatic mechanisms, it is likely that old where people die. The National Centre gave to improve the quality of pain management in and frail persons are more susceptible to their

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 5 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

actions, as these persons have reduced capacity Abstract number: 21 United Kingdom (September 1997), Geneva, to maintain homeostasis. Presentation type: Invited Switzerland (September 1999), Palermo, Italy Ulcer complications are the most common Poster number: (April 2001), Den Haag, the Netherlands adverse effect of NSAIDs. Epidemiological data (April 2003). The 9th Congress is held in indicate that the risk for this complication is 10 Life threatening illness, what happens in Aachen, Germany, April 2005. The 10th EAPC times higher in persons >80 than those <49 the family? Congress will be held in Budapest 2007. years. What is less known is that the risk for ● THE EAPC FORUM ON RESEARCH IN renal failure and heart failure is almost doubled Pam Firth, Isabel Hospice, Hertfordshire, UK PALLIATIVE CARE: The first Research Forum for those above 65 years, and for those with a of the EAPC in December 2000 was such a history of cardiac disease the risk for heart Frances Sheldon was a major international success that the EAPC Board of Directors failure is 26 times higher. figure in social work and Palliative Care. Her decided to continue to organise such In the last decade, a new class of NSAIDs has early death in 2004 was a great loss but her meetings every second year in between the entered the market. These are the COX-2 legacy of writing and teaching lives on for us to EAPC Congresses. The second Forum was inhibitors, expected not to block the formation use and develop. We will hear from four held in Lyon, France, May 2002. The third of prostaglandins related to homeostasis, only colleagues about her work and influence. one in Stresa, June 2004. The 4th Forum will those related to pain and inflammation. A This brief paper will look at the value and be held in Venice, Italy, 25 to 28 May 2006 better adverse effect profile was expected. Data need to provide pyschosocial care for the ● THE WEB - WWW.EAPCNET.ORG indicates that ulcer complications may be lower patient and his/her family. Frances promoted ● SCIENTIFIC JOURNALS: European Journal of in younger people, however, this has not been the role of social workers, within a Palliative Care – the EAPC Journal. Palliative shown in older persons. Moreover, since COX-2 multiprofessional, team offering palliative care Medicine – The Research Journal of the EAPC enzymes are found in the kidney, one cannot and in her book and many articles and book ● THE “RESEARCH NETWORK” expect that renal and cardiac complications are chapters she clearly articulated the need to ● PALLIATIVE CARE IN EASTERN EUROPE: AN reduced for these drugs. Withdrawal of assess the patient within the various systems EAPC PROJECT rofecoxib indicates that these drugs also have within which he/she operated. The author a ● THE “TASK FORCES” (Projects) safety problems. practising social worker with training in family ● The EAPC Ethics Task Force on Palliative Care NSAIDs should be used with great care in and groupwork will draw on the work of and Euthanasia elderly, paracetamol is the recommended systemic therapists to show the need for ● EAPC Taskforce on Palliative Care alternative. comprehensive services which can assess and Development in Europe help the whole family. Frances believed that ● Taskforce on Palliative Care for what happened to one family member had a – Taskforce on Nursing Education Abstract number: 20 profound effect on all the family especially – Survey on Medical Education Presentation type: Invited children and this will be illustrated from the – Taskforce on Medical Education. Poster number: author’s own practise.

The immunological effects of opioids Abstract number: 23 drugs: could they be particularly relevant Abstract number: 22 Presentation type: Invited in the frail patient? Presentation type: Invited Poster number: Poster number: Paola Sacerdote, Pharmacology, Milano, ITALY Interdisciplinary Education The development of EAPC Acute and long-term administration of opioids David Oliviere, St. Christopher’s Hospice, is known to have an inhibitory effect on several Franco De Conno, National Cancer Institute of London, UK immune functions, including antibody and Milan, Italy, Heidi Blumhuber, National Cancer cellular immune responses, NK cell activity, Institute of Milan, Italy This tribute to Frances Sheldon will emphasise cytokine expression and phagocytic activity. her work with all disciplines through education Consistently opioid administration has been The European Association for Palliative Care in particular. Multi-professional working, associated with increased susceptibility of (EAPC) was established on 12 December 1988, education and networking were Frances’ animals to bacterial and viral infections and with 42 founding members and following strengths and she released the synergy of with decreased survival in tumour bearing important initiatives by Professor Vittorio various professional disciplines in her teaching. animals. In order to assess the clinical relevance Ventafridda and the Floriani Foundation. The She worked in the contexts of practice, of opioid-induced immunosuppression, it is aim of the EAPC is to promote palliative care in academia and Europe and, more recently, in important to distinguish between transient Europe and to act as a focus for all of those who user involvement. Her practice and writings are immune alterations and actual initiation or work, or have an interest, in the field of clearly patient-centred. facilitation of disease A normal healthy host can palliative care at the scientific, clinical and The presentation will be divided into attitude, in fact tolerate some immune perturbations, social levels. inter-disciplinary education and challenges for and deleterious consequences are not usually The rapid development of the palliative care modern palliative care. This will include the dependent on disturbances in one function. movement and the growth of national ability to deliver education directly (using However there are clearly some moments of the associations in the European countries made a diverse and contrasting of teaching methods) life span and some situations where the risks change in the EAPC’s structure necessary to and indirectly, setting up pioneering derived from opioid-induced enable these associations to join the EAPC programmes (e.g. the first MSc in Psychosocial immunosuppression may become relevant. A collectively. This decision was a big step forward Palliative Care in Europe). greater vulnerability of the immune system is in the development of the membership. In As a founder of modern palliative care in present in the young and in the aged 1992, the EAPC accepted 3 associations as its Europe, the paper explores Frances’ principles individuals, when the immune system first collective members increasing the number in inclusion, inter-disciplinarity and integrity. A undergoes developmental changes: maturing in of persons represented to 1028 persons. In 2004 true European, the influence of her education infancy and decline in ageing. The opioid- the number of associations has increased to 31 will continue ‘beyond the border’. induced immunosuppression can obviously representing a total of approximately 50,000 result particularly dangerous in the already persons, and there are still 200 individual immunocompromised patients, such as the members. The members come from 24 Abstract number: 25 HIV+ patients. Another situation at risk is the European countries and 9 Countries from Presentation type: Invited perioperative period, since it is well known that outside Europe. Even though the EAPC is a Poster number: anaesthesia and surgery affect the immune European association, it has members from response. As a consequence, for example, the many non-European countries. Life and Death Decisions: researching the treatment of peri-operative pain in the elderly Since 1990 the Head Office of EAPC has been way forward patients constitutes a critical point. Interestingly based at the Division of Rehabilitation and it is emerging, mostly from experimental Palliative Care within the National Cancer Sheila Payne, Psycho-social and Spiritual Care, studies in the animal, that not all opioids share Institute in Milan. In 1998 the EAPC was London, UK the same immunosuppressive properties, and awarded the status of NGO – Non that some molecules are more protective of the Governmental Organisation of the Council of This paper aims to highlight the contributions immune system. Although only a few Europe. of Frances Sheldon to the palliative care comparative studies of the immunomodulating We can list the following initiatives of the research agenda. I will reflect upon her roles effects of different opioids in human have been EAPC: within research and how her values were made, the possibility to choose opioids devoid ● ITS CONGRESSES: Since 1990 the EAPC has influential in guiding the development and of immunosuppressive effects deserves further organised 8 European Congresses: in Paris, management of research projects. While attention. France (October 1990), Bruxelles, Belgium Frances was not primarily a researcher, she was (October 1992), Bergen, Norway (June 1994), an active collaborator on many projects and a Barcellona, Spain (December 1995), London, teacher. She promoted critical scholarship

6 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

within her own discipline of social work and Rajagopal, now at Amrita Institute of Medical intervals. Results: The total number of adverse supported the research of many students and Sciences, Kochi, has established a 2-year outcomes recorded was 1749. With an colleagues. This paper will argue that her residential fellowship programme. Both Calicut increasing trend, the greatest numbers of events approach was derived from social science and and Kochi run a 6-week Basic Certificated reported were within the categories of prioritised the perspectives of patients and Course in Palliative Medicine. Reena George is uncontrolled symptoms for greater than 24 carers. She valued attention being given to the now Professor of Palliative Care at CMC Vellore. hours (maximum 52/six month period), and practical, personal and social problems facing Oncology fellows rotate through her dissatisfied clients and colleagues (maximum dying patients, families and practitioners. Her department; so too at the Postgraduate Institute 31/six month period). There was a downward perspective derived from social work and its for Medical Education and Research, trend in the reported number of outcomes in values of social inclusion, equity and Chandigarh. Several other activist centres death without dignity and missed faecal citizenship, were in marked contrast to bio- emerging, notably in Bangalore, and Guwahati, impactions. Qualitative data identified where

medical models which emphasised disease. Her Assam. Future (2010s): will still depend on care could be enhanced by improved APRIL 8 FRIDAY legacy will live on in the many students and dedicated and determined pioneers. Palliative communication with colleagues and focussed colleagues she supported in gaining their first care needs to be introduced into the curricula of education in symptom management. understanding of research and its application to Medical Colleges and Nursing Colleges. Also Conclusions: The SESPCS weekly quality practice. need for an accredited programme of specialist assurance process has facilitated the training. The barriers to the developing identification of problems involved in the palliative care services throughout India are delivery of good quality palliative care. This Abstract number: 27 similar to those seen elsewhere; include general model of quality assurance goes ‘beyond the Presentation type: Invited medical indifference, opposition in most border’. It has been transferable across different Poster number: Regional Cancer Centres, bureaucratic obstacles clinical settings and embraced a diversity of in relation to the availability of oral morphine, physical, psychological and social outcomes. Working to improve access to palliative State and Union Health Ministry inertia, and Through the quality assurance cycle, it is care around the globe: the role of the lack of support from the Medical Council of advocated future evaluation of adverse International Association for Hospice and India. outcomes are measured against standards. Palliative Care (IAHPC)

Lilliana De Lima, IAHPC, Houston, US Abstract number: 29B Abstract number: 31 Presentation type: Invited Presentation type: Oral Evidence shows that in many parts of the world Poster number: Poster number: there are few if any palliative care services, and an almost total absence of palliative care Breaking down regulatory barriers A survey of clinical audit tools and risk education and training in universities and to opioid availability in Europe: assessment tools in inpatient palliative colleges. Millions are dying with unnecessary Is there progress? care units in the UK and Ireland. suffering and their doctors and nurses often unaware of what can be done to help them. The David Joranson, University of Wisconsin CCC, Liam O’Siorain, Palliative Care, Dublin, International Association for Hospice and Madison, USA, Daniela Mosoiu, Study Centre IRELAND Palliative Care (IAHPC) was created to provide for Palliative Care, Brasow, ROMANIA experience, expertise and education to Background: Clinical Governance promises a programs, institutions and individuals and Adequate relief of pain due to cancer and more accountable health service with an fulfill some of the unmet needs of the patients, HIV/AIDS is often blocked by regulatory barriers emphasis on creating an environment where families and health care workers who do not to the availability and prescription of opioid excellence in clinical care will flourish. have access to palliative care. pain medications that are recommended by the Measuring excellence brings many challenges. The organization has developed programs to World Health Organization. This session will One of these is establishing the evidence for support and promote the development of present progress to identify and remove which tools are most useful measuring outcome palliative care around the World which have regulatory barriers in European countries, in palliative care. Bereavement risk assessment proven to be effective in disseminating review the mandate and resources available to has been identified as in determining best use information, increasing awareness, changing address this problem, and describe related of resources and its presence is a further marker public policy and educating health care workers activities of the World Health Organization. of quality in a service. Aims and objectives: To and social workers to improve the care of The focus will be on Eastern Europe, in determine the use of validated clinical audit patients with far advanced conditions. This particular a national project to identify and tools in inpatient palliative care units in the UK session will describe the main programs of the remove regulatory barriers to pain relief in and Ireland. To identify which tools are in use organization, including the Traveling Romania. The session will conclude with and what the geographic clustering implies. To Fellowship Program, Traveling Scholarship audience discussion about progress and issues identify whether risk assessment in Program, Clearing House Program and the in their countries and next steps. bereavement is part of standard practice and to Faculty Development Program, as well as its identify which tools are being used. future projects to develop a global network of Methodology: A postal questionnaire was sent support among existing individuals, programs Abstract number: 30 to all inpatient units in the UK and Ireland. A and institutions. Presentation type: Oral response rate of 75% was achieved after a Poster number: second postal reminder. Results: Just over 50% of units carry out clinical audit using a variety Abstract number: 29 A ten year review of an Australian of validated tools. There is clear geographical Presentation type: Invited palliative care quality assurance program clustering with certain tools popular in Poster number: geographical areas. There is no clear favourite Fiona Lindsay, Palliative Medicine, OXFORD, tool although POS developed by Prof Irene Palliative Care in India: the way forward GREAT BRITAIN, Rebecca Strutt, Prince of Wales Higginson is the most widely used tool. Risk Hospital, Sydney, AUSTRALIA assessment is carried out more commonly than Robert Twycross, Oxford University, Oxford, UK use of a clinical audit tool although most Aim: To evaluate the adverse outcomes recorded respondents are using inhouse tools or Past (1990s): some 60 doctors and nurses came over a decade by the South Eastern Sydney modified versions of the assessment tool to UK for 8-week training course. A few became Palliative Care Service (SESPCS) quality developed by Murray-Parkes. activists. The Pain and Palliative Care Clinic in assurance program. Method: A retrospective Calicut, Kerala, led by Dr MR Rajagopal, became review of the SESPCS quality assurance data was the jewel in the crown. Received much foreign undertaken. Since 1993, at the weekly Abstract number: 32 financial aid. Sees 2000+ new patients/year and multidisciplinary team meeting, adverse events Presentation type: Oral now has 40 Link Clinics. Indian Association of that occurred during the previous week were Poster number: Palliative Care founded 1994; begat the Indian reported. The services involved in the Journal of Palliative Care. Ongoing struggle to evaluation included a hospital support team, Professional caregivers’ requests for simplify regulations governing morphine community service and inpatient hospice. consultation to palliative care availability. Present (2000s): PPCS now Institute Outcomes were systematically considered consultation teams (PCC teams) of Palliative Medicine led by Dr Suresh Kumar. within the categories of death without dignity, With Christian Medical Association of India, uncontrolled symptoms for greater than 24 Marieke Groot, Centre for Quality of Care runs a 2-year distance-learning programme for hours, out of hours admissions, dissatisfied Research (229), NIJMEGEN, NETHERLANDS, Fellowship in Palliative Medicine. A clients and colleagues, missed faecal Myrra Vernooij-Dassen, Radboud University Neighbourhood Network in Palliative Care impactions, and development of pressure sores. Nijmegen Medical Center, NIJMEGEN, functions in several Districts in northern Kerala; All data collected between July 1993 and June NETHERLANDS, Annemie Courtens, University has thousands of supporters and volunteers. Dr 2003 was evaluated and collated in six month Hospital Maastricht, MAASTRICHT,

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 7 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

NETHERLANDS, Annemieke Kuin, VU Each of the respondents assumed that their own Abstract number: 35 University Medical Centre Amsterdam, motivation to use this tool was better than the Presentation type: Oral AMSTERDAM, NETHERLANDS, Barbara van der others motivation. Furthermore, the Poster number: Linden, University Medical Centre Utrecht, respondents at the outward unit reported to be UTRECHT, NETHERLANDS better motivated than the respondents at the Personal coping with difficult situations inward unit. The latter respondents did not see in palliative care. A Delphi Study Object of study. Professional caregivers need a the utility of the tool; they experienced lack of substantial basis of competence and expertise in control and meant that the CT lead to an Carlos Centeno, Programa de Medicina order to provide appropriate palliative care. artificial way of communication with the Paliativa, Pamplona (Navarra), SPAIN, Helena Little is known about the problems patients. All the respondents claimed that the Franco, Hospital Campo de Arañuelo, professionals are confronted with in their daily implementation was not a change they needed. Navalmoral de la Mata (Caceres), SPAIN, Belén practice and for which they request advice and ‘This is a change directed from the research unit López, Unidad de Cuidados Paliativos, Hospital support in this complicated field of care. Our and not from the clinic’ was a common Los Montalvos, Salamanca, SPAIN, Ana Carvajal, aim was to investigate the extent and nature of opinion. The respondents reported a gap Programa de Medicina Paliativa, Clínica the requests for consultation to palliative care between clinical aims and research work. Universitaria de Navarra, Pamplona (Navarra), consultation teams (PCC teams) in order to Conclusion: Ownership and involvement from SPAIN, Francisco Vara, Unidad de Cuidados trace the gaps in palliative care experienced by all users are important factors in the changing Paliativos, Hospital Los Montalvos, Salamanca, the professionals themselves. Methods. In part process. SPAIN of a large national palliative care development program, we have been able to study the With the aim of studying the management of requests for consultation over a two-year period. Abstract number: 34 feelings and personal sources of help in difficult A standard registration form was developed. The Presentation type: Oral situations, at the Palliative Care Unit of the H. requests for consultation were classified Poster number: Los Montalvos (Salamanca), we have completed according to 11 domains relevant in palliative a Delphi Process, considering the whole team as care. Main results. Professional caregivers Beyond the Average Audit a group of experts. All 32 professionals in the requested a consultation 4351 times. These group were invited to participate and 93% were requests consisted of 8413 specific problems Kath Defilippi, Patient Care Services Co- included: 4 doctors, 18 nursing staff, 6 porters, 2 distributed over 11 quality-of-life and quality-of- ordination, Port Shepstone, S. AFRICA, Sue other (median experience was 4 years, age 38 care domains. The dispersal of problems over Cameron, Hospice Palliative Care Association of years, 9 males, 31 females). Three rounds were these domains was unbalanced: over 40% of the S Africa, Pretoria, S. AFRICA completed by 29 persons (96%). The initial specific problems were physical in kind; open question provided 132 different proposals psychological and pharmacological problems The Hospice Palliative Care Association of which were put into thematic groups and and problems concerning organization of care South Africa (HPCA) in conjunction with the submitted for the group’s evaluation in two were also frequently mentioned (7.7%, 12.5%, Council for Health Services Accreditation of further rounds. The greatest consensus (high and 12.8%). In contrast, issues of a spiritual Southern Africa (Cohsasa) have developed and median) was found in gratefulness, teamwork, nature or concerned with daily functioning are currently piloting managerial and clinical fullness of personal life, interiorisation. were raised infrequently (1.1% and 0.9%). palliative care standards. A graded system allows Expression of feelings and experience had Conclusions. A valid basis has been obtained for hospices to be awarded pre-entry, entry, intermediate median, meaning that these is a from the results of our study from which intermediate or full accreditation. help for an important part, but not the majority. quality improvements in palliative care can be In phase one of HPCA’s Mentorship project, The thematic groups, religiousness, developed and implemented. Furthermore, the established “Mentor” hospices gave structured rationalization, avoidance and distancing were results can be used in order to set up PCC teams guidance and support to emerging and strategies for a specific group. The greatest with similar approaches to support for developing programmes, in terms of expanding consensus was obtained for the following professional caregivers. In a well-founded policy Integrated Community-based Home Care proposals: 1. I accept the thanks of the patient for palliative care in the future there is room for (ICHC). This collaborative model was developed and above all, of their families, as a sign that, palliative care consultation as well as by South Coast Hospice in response to the beyond the destructive effect of death, there is educational and organizational interventions. escalating and unprecedented need for satisfaction for the way in which we have been palliative care caused by the HIV/AIDS present during this stage of life. 2. I consider my epidemic. It is estimated that > 5 million South personal balance, balancing the implication Abstract number: 33 Africans are HIV+. Access to antiretroviral with the Unit’s patients, with contact with Presentation type: Oral therapy is still limited. The present mentorship other people, with nature, reading and time for Poster number: focus is on interdisciplinary regional mentor silence. 3. It helps me to know that the ‘Great teams helping hospices understand and comply Team’ that works at the Unit and its working The Pat-C Project. A qualitative study of with the HPCA/Cohsasa standards in methods are a great help to patients and their implementation of computerised preparation for accreditation. A designated families and that comforts me and helps me to technology in a palliative care unit Regional Mentor works specifically to promote see life (and death) in a different way. The a cascade effect by concentrating on potential Delphi system is the result of an researching Beate André, Dep. of Cancer Research and mentors from the pool of development site procedure able to examine a complex question: Molecular Med., Trondheim, NORWAY, Gerd hospices. A Mentorship Manual was compiled the personal coping with the problems. In this Inger Ringdal, Dep. of Psychol. NTNU, to guide the process. group, the gratitude perceived, the fullness of Trondheim, NORWAY, Jon Håvard Loge, Dep. Funding from a variety of international personal life and the support of the team were of Behaviou. Scienc. in Med., University of Oslo, donors who include the Open Society Institute, the most useful tools when working in Palliative Trondheim, NORWAY, Stein Kaasa, Dep. of Pfizer, Elton John AIDS Foundation and PEPFAR Care. Cancer Research and Molecular Med, NTNU, has enabled HPCA to embark upon this exciting Trondheim, NORWAY venture. The unique combination of mentorship and accreditation is simultaneously Abstract number: 36 Background: When changes are introduced into developing mentor capacity and accelerating Presentation type: Oral health care units it can lead to both resistance the process of accreditation. The target for the Poster number: to change and perceived lack of control among first year is to deliver quality palliative care to the employees. Strategies used to implement 180,000 patients and families through ICHC. Burnout Syndrome in Palliative Care computer technology (CT) can effect the level Our long term vision is to have each of the Professionals in Spain of employee stress. The major objectives of the current 60 HPCA member hospices fully present study were to examine how accredited and able to serve as a palliative care Marina Martínez, Programa de Medicina implementation of a computerised system for resource beyond the borders of hospice, and for Paliativa, Pamplona (Navarra), SPAIN, Carlos symptom assessment was conducted, to obtain mentorship to be extended beyond our national Centeno, Clínica Universitaria, Universidad de data about the implementation process, and to borders. Navarra, Pamplona (Navarra), SPAIN, Álvaro examine the reasons why this implementation Sanz Rubiales, Hospital Universitario de failed. Methods: A computerised system for Valladolid, Valladolid, SPAIN, Ana de Santiago, symptom assessment was introduced in the Clínica Universitaria, Universidad de Navarra, Palliative Medicine Unit at St Olav Hospital, Pamplona (Navarra), SPAIN, Luis de Nicolás, Trondheim, Norway. A qualitative approach Facultad de Psicología, Universidad de Deusto, based on a depth interview with seventeen Bilbao, SPAIN respondents (nurses, special nurses, physicians and physiotherapists) was used to obtain data Research on Palliative Care professionals has about the implementation process. All the usually reported levels of Burnout Syndrome respondents in the sample participated in the lower than the levels stated for other health implementation process at the unit. Results: professionals, despite the fact that daily work on

8 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Palliative Care has traditionally been considered Abstract number: 38 small group of bereaved clients (N=28) and hard and potentially stressing due to the daily Presentation type: Oral associated counsellors. This paper will offer an contact with suffering and death. Out of Anglo- Poster number: overview of the four phases of the action Saxons countries there are no wide and detailed research study; describe methodological studies on the Burnout (B) of PC professionals. Beyond the Border – Developing a approaches used and present the findings of the The present work explores B in a sample of PC national network for Children’s study in relation to current theory and practice. professionals working in hospitals in Spain. Bereavement Services in the UK Results: The strength of action research is its Participants-Methodology: 256 physician (P) application and implications to practice, and and nurses (N) from hospitals with Palliative Barbara Monroe, Chief Executive, Sydenham, the resultant manual is presented as a unique Care Units were interviewed following the London, GREAT BRITAIN and welcomed resource within this sensitive Maslach Burnout Inventory (MBI). The global and neglected area of psychological support for

response rate was 67%. 121 questionnaires This paper will consider the impact of palliative a marginalized population. APRIL 8 FRIDAY administered to PC professionals were collected, care on the development of children’s together with 75 administered to professionals bereavement services. It will examine the from the same Hospitals but from other activity of the Childhood Bereavement Network Abstract number: 40 settings. Results: When comparing all groups of (C.B.N.) since its inception in 1998 as a multi Presentation type: Oral physicians and nurses, P working in PC showed agency collaborative project aiming ‘to improve Poster number: the best results with lower levels of B (which, the quality and range of bereavement support according to the subscales of the MBI, was for children, young people and their families in The use and experience of volunteers in expressed in lower levels of emotional the UK’. It now has over 260 members; two UK childhood bereavement services exhaustion (EE) and depersonalisation (DP), thirds organisational, one-third individual. In a and higher levels of personal achievement recent UK survey (Rolls and Payne, Palliative Elizabeth Rolls, School of Health and Social (PA)). In contrast, PC nurses, obtained much Medicine 2003; 17) hospices/palliative care Sciences, Cheltenham, GREAT BRITAIN, Sheila higher levels of B than PC doctors and identical services made up 44% of host organisations for Payne, Palliative and End-of-Life Care Research to the B of nurses working in other areas. children’s bereavement services. A shortfall Group, University of Sheffield, Sheffield, GREAT (Doctors in PC: EE 14.9±5.7, DP 3.5±3.4 and PA: remains in services open to all and offering BRITAIN 39.6±5.9 versus PC nurses: EE: 22.2±13.4, DP: support to those bereaved through unexpected 7.4±5.3 y PA:34.8±7.1). Conclusions: The as well as anticipated death. The presentation Childhood bereavement services are a recent indicators of burnout among nurses studied will report on a mapping exercise undertaken UK phenomena (Rolls and Payne 2003) and the were very high both for nurses working in PC by the CBN for the UK Government; 700 use of volunteer unpaid staff within them and nurses working in other areas. These data questionnaires identified 47 open access remains largely unexplored. One aim of a wider disagree with what has previously been services nationally. Thirty-three of these qualitative study on UK childhood bereavement described for PC. Others surveys must to services returned a self-assessment evaluation of services was to explore the role and work confirm this data and, in case, it could be their services against the consensus developed experiences of unpaid volunteer staff. Method: convenient to analyse the selection process, the CBN Guidelines for Best Practice. Results will be In the first phase, a survey was conducted to experience and the motivation of PC nurses in reviewed. The mapping exercise revealed gaps in identify and describe childhood bereavement our nation. service provision. The CBN now has funding for services in the UK, including staffing a consultancy service to encourage service arrangements (n=108). The second phase developments in under resourced geographic adopted an organisational case study design to Abstract number: 37 areas. The CBN website (www.ncb.org.uk/cbn) examine 8 childhood bereavement services in- Presentation type: Oral and on-line national service directory were also depth. Data were collected from 23 paid staff Poster number: established. Other CBN outputs include: policy and 37 unpaid volunteer staff, using semi- development and advocacy at Government structured interviews, and analysed using a An Inventory of Evidence-Based level; development of ‘Guidelines for grounded theory approach. In addition, a postal Performance Measures in Palliative and Participation’ for children and young people; survey of unpaid volunteer staff (n=73) was End of Life Care Service Delivery regional meetings and national conferences; undertaken, and analysed using SPSS. resource development e.g. videos; regular Discussion: Within childhood bereavement Konrad Fassbender, Palliative Care Research newsletters and e-mail updates; collaboration in services, the staffing and deployment of unpaid Initiative, Edmonton, Alberta, CANADA, a St Christopher’s and Help the Hospices volunteer staff varies and is less well Carleen Brenneis, Capital Health, Edmonton, innovation – the UK’s first university validated differentiated and formalised than in hospices CANADA, Donna Wilson, University of Alberta, courses in Childhood Bereavement. Next steps and specialist palliative care services. Within the Edmonton, CANADA, Pam Brown, Calgary include a service self-assessment quality study, three types of staffing arrangements were Regional Health Authority, Calgary, CANADA, assurance scheme and an international identified, with 11% of services being wholly Linda Slater, University of Alberta, Edmonton, network. run by paid staff (n=10), 14 % wholly run by CANADA unpaid volunteers (n=13) and 73% (n=66) a mixture of paid and unpaid staff (n=66). Greater Our objective was to provide decision makers Abstract number: 39 difficulties with role boundaries were with appropriate tools to facilitate Presentation type: Oral experienced where there was a mixture of paid improvements in the quality of care provided to Poster number: and unpaid staff, and in these services there dying Canadians, their families and caregivers. were more limits on the range and type of We systematically reviewed over 7,000 Developing a bereavement counselling activities that unpaid volunteers were able to references obtained from academic journals, manual for people with intellectual undertake. However, unpaid volunteer staff government reports and the internet. A total of disabilities: Journeys without maps were well-qualified, with 68% (n=50) holding 1 50 performance measures were identified as or more qualifications. Paid staff valued their pragmatic and oriented toward service delivery. Susan Read, Nursing and Midwifery, Stoke on contribution and recognised that service An inventory was constructed which contains Trent, GREAT BRITAIN interventions would be very difficult to provide eleven descriptors for each measure. Eighty-six without them. Despite the difficulties that arise percent of measures rely on prospective Aim: There is limited empirical research that in trying to locate ‘volunteering’ within this questionnaires, 12% on chart review and 2% has investigated bereavement counselling as an type of service provision, unpaid volunteer staff use administrative data. The vast majority of intervention for people with intellectual are a well-qualified group who make an these measures were not validated. We conclude disabilities (ID). A seven-year participatory important contribution to childhood that performance measures for palliative and action research study conducted within a bereavement services. end-of-life care are in the early stages of voluntary bereavement counselling development and therefore require substantial organisation in Staffordshire, England, enabled investment by all levels of government. the organisation to develop a specialist counselling service to accommodate bereaved people with intellectual disabilities. This was a unique, specialist service in that it was embedded and developed upon a generic counselling model that was adapted to accommodate the needs of a different client population. The emergent aim of this collaborative research study was to develop a bereavement counselling manual for people with intellectual disabilities. Method: The researcher explored the process and outcome of the bereavement counselling experience with a

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 9 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 41 meeting led by a doctor and a nurse. Also, there Abstract number: 45 Presentation type: Oral is an emphasis on creating privacy and caring Presentation type: Oral Poster number: atmosphere, as well as an opportunity for the Poster number: family members to stay with the patient as A bereavement support programme much as possible. The follow-up program The Role of Multi-Professional Joint for spouses during one year after the consists of several components. First, at the Assessments in Continuing Professional patients’ death unit, there is an invitation to a deathbed prayer Development service. Secondly, a sympathy card is sent Ingrid Nilsson, Sjukvårdsteamet, Uppsala, within a month. Thirdly, a nurse gives a David Waterman, Southport, GREAT BRITAIN, SWEDEN, Maria Carlsson, Dept. Public health supportive telephone-call within a few months. Claire Haskins, South Manchester University and caring sciences Uppsala University, Uppsala, In addition, invitation to fellowship meetings is Hospitals NHS Trust, Manchester, GREAT SWEDEN scheduled for the family four times during a BRITAIN, Valerie O’Donnell, Lancashire year. The meetings cover many issues, for Teaching Hospitals NHS Trust, Preston, GREAT One cornerstone in palliative care is to offer the example: A memorial service which includes BRITAIN, Jimmy Brash, St. Catherine’s Hospice, patient’s family support during the illness and discussions on the experience of bereavement, a Preston, GREAT BRITAIN, Joan Devereux, after the patient’s death. Bereavement follow- presentation on the importance of physical Lancashire Teaching Hospitals NHS Trust, ups are often an ambition but the support is exercise for general well-being in bereavement, Preston, GREAT BRITAIN mostly unstructured and without clears changes in insurance and financial matters and protocols. In order to improve the support to a church service during the Advent season. The The introduction of specialist registrars into bereaved spouses during the year after the team is furthermore planning to start a palliative care teams in the North West of patient’s death, a project was started. The telephone-helpline, open once a week, for the England has resulted in change of practice intervention consisted of three visits by a nurse families in bereavement. Finally, the team has a within these teams. Increasingly, two members (after 1, 3 and 13 month). The intervention future vision for the unit to become a center of of the multi-disciplinary team (i.e. a doctor and consisted of conversations about the patient’s bereavement counselling in Iceland mainly by a nurse) are undertaking assessments together death and the spouses; health, grief reactions, informing and supervising other professionals. rather than each consulting alone. This project socio-economic situation, exercise and lifestyle Also, there is an emphasis on research to aimed to review the professional development and occurrence of post-bereavement evaluate the importance and the advantages of joint assessments within both hallucinations. The presentation is an accomplishment of the bereavement program. hospital and community specialist palliative evaluation of the conversations at 1 and 3 care teams. The joint assessments undertaken month. Method: Spouses, to patients’ cared for by one hospital team (HPT) and two The advanced home care team in Uppsala, were Abstract number: 44 community teams (CPT1, CPT2) were audited. invited to the project. Each person was Presentation type: Oral These assessments were initiated for complex encouraged to talk freely about his or her Poster number: clinical management and difficult situation, but enough direction was given to communication issues, as well as for support ensure that all items listed on a standardised Bereavement Support following Home and education. Each professional involved questionnaire were covered. Results: Fifty-one and Hospice Deaths completed a standard proforma, following each spouses fulfilled the inclusion criteria and were assessment. The proforma measured eight invited to the project, 45 (28 women and 17 Alison McNulty, School of Nursing, Midwifery separate categories of professional development: men) accepted. Nearly 98% were positive or and Health Visiting, Cheadle, GREAT BRITAIN information gathering, pharmacology, very positive to the project when they got the symptom management, communication, social, invitation. The age range was 37–84 (mean 66 Following cancer deaths in the hospice or psychological, faith/ culture and education/ years). The spouses felt quite healthy (71% vs. home, hospice and home care services provide supervision. A positive response to any single 70%) but tired (64%, 33%, p<0.01) and suffered much valued bereavement support to the category was recognised as a perceived from sleep disturbance (43%, 44%). Forty-nine family. The objectives were to explore developmental benefit. Seventy-seven joint percent had experienced post-bereavement experiences of bereavement and compare the assessments were reviewed (HPT=41, CPT1=19 hallucinations. The spouses’ grief reactions support provided in both settings. The needs of and CPT2=17). At least one category of were initially quite high but showed a small the bereaved, what they value and what they professional development was positively scored decline from 1 (mean 1,78) to 3 months (2,06), perceive as barriers to support were explored. in almost all proformas (HPT=90%, CPT1=97% (one a 5 grade scale, low mean values indicate a The implications being to explicate the needs of and CPT2=97%), with two or more categories high level of grief). Conclusion: Our opinion is the bereaved, and where services could focus highlighted in a significant proportion that when spouses are offered bereavement their provision and remove barriers. In-depth especially in a community setting (HPT=35%, follow-ups they are mostly positive. The visits interviews were conducted with the bereaved. CPT1=79% and CPT2=71%). These positive have been highly appreciated and fulfil a great Hospice and home services completed a survey benefits were mirrored across all professional need even when the spouses have good social upon each occurring death over a three-month groups evaluated. Multi-professional team support. period, stating the support offered. Finally focus members within both community and hospital groups using participatory evaluation methods palliative care teams perceived that joint were conducted with the bereaved to explore assessments enhanced their continuing Abstract number: 43 needs, valued interventions and barriers to professional development. Further studies using Presentation type: Oral support. Interviews (n12) showed similar an objective measurement of professional Poster number: experiences, closely echoing literature as to development would further clarify these typical expressions of grief. The provision of themes. Bereavement care in a palliative care unit support differed greatly in both settings (22 in Iceland services). Of 580 bereaved, 520 were offered support. The hospice sample was more likely to Abstract number: 46 Gunnlaug Helga Ásgeirsdóttir, Palliative Care be offered support but it was more likely to be Presentation type: Oral Unit, Kópavogur, ICELAND, Bärbel Schmid, offered earlier in the home. Hospices favoured Poster number: Landspítali University Hospital, Kópavogur, letters, telephone calls and sympathy cards ICELAND, Ólöf Stefanía Arngrímsdóttir, whereas home services strongly favoured visits Cross-cultural investigation on Landspítali University Hospital, Kópavogur, and telephone calls as methods of support. spirituality, religiosity, and mental health ICELAND, Jóhanna Ósk Eiríksdóttir, Landspítali Focus groups (n5) revealed the value of support of patients with amyotrophic lateral University Hospital, Kópavogur, ICELAND, Ásta groups and gestures like funeral attendance. sclerosis (ALS) approaching death Óladóttir, Landspítali University Hospital, Needs included practical/financial help, more Kópavogur, ICELAND, Gunnlaug information, and the need for early Maria Wasner, Klinikum Grosshadern, Munich, Gudmundsdóttir, Landspítali University interventions. Barriers included transport to GERMANY, Vivian Drory, Tel Aviv University, Hospital, Kópavogur, ICELAND events and the family were identified as a poor Tel Aviv, ISRAEL, Gian Domenico Borasio, source of support. Hospice and home care Interdisciplinary Center for Palliative Medicine, The first palliative care unit in Iceland, founded services are structured differently, reflecting Munich, GERMANY, Steve Albert, Columbia in 1999, has bereavement care as one of its their provision of support. However the University, New York, U. STATES service priorities. An interdisciplinary team has experience and needs of the bereaved are developed a one-year follow-up program which similar. The findings show the needs for Background: Little research is available on main purpose is to support the bereaved family. support, what is valued, and perceived barriers. variation in end-of-life care in ALS across The support starts on the unit when it is By breaking the borders of the service structure countries. It is also unclear how cultural observed that the patient is dying. The nurses person-centred support can be offered. variation may affect patient and family inform the family about the patient’s experiences at the end of life. For example, does deteriorating state and what may be expected the risk of depression at the end of life vary during the dying process. For further according to the cultural setting? How do information there is an invitation to a family religiousness and spirituality of patients with

10 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

ALS and their caregivers change with the provision of these foods was seen as socially organisation of First Symposium Hospice and nearing of death? We investigated these issues supportive and indicative of expressing concern Palliative Care and foundation of Croatian using a standardized protocol in three for the ill person. – Food in hospital and Society for Hospice/Palliative Care, as the part countries: USA (New York), Israel (Tel Aviv), and hospices. The lack of Chinese food and the poor of Croatian Medical Association. The great Germany (Munich). Objective: To assess quality and perceived unsuitability of ‘western’ number of conferences, courses, lectures with depression, perceived meaning in life, quality of food was a major barrier to admission. invited speakers from abroad were held, all the life, religiosity, and spirituality in ALS patients Implications: Understanding the cultural time involving different professions and and caregivers across sites and over time. significance of food as therapeutic and as a covering different problems – pain, Methods: Patients with a definite or probable means of social exchange is important to psychosocial issues, volunteers, children’s ALS and a forced vital capacity of 60% and their promote palliative care for minority palliative care, neurological palliative care, caregivers were interviewed every 2–3 months communities. primary care physicians, stopping the senseless

using standardized measures (visual analogue treatment, homes for elderly and sick workers APRIL 8 FRIDAY scales, SEIQOL-DW, Beck Depression Inventory, and others. Six books were translated and ALSFRS, FACIT-Sp, Idler Index of Religiosity, and Abstract number: 48 edited, great number of journals articles and SELT). Results: To date, 19 patients from New Presentation type: Oral chapters in textbooks were published. In York, 21 from Tel Aviv, and 17 from Munich Poster number: October 2002 Regional hospice centre in Zagreb have been enrolled and were available for was opened, owned by Croatian Association of analysis. Sociodemographic characteristics were ‘How could you have a choice?’: Older Hospice Friends and supported by Ministry of similar at all sites. At baseline, Israeli patients Chinese people’s views on Cancer and Health. Since 2000 the interdisciplinary/multi were significantly more disabled than German Palliative care choices professional hospice home care visits started, and American patients. Even with adjustment almost all members of the team being for differences in disability status, Israeli Alice Chapman, Palliative & End-of-Life Care volunteers. In March 2002 the 1st session of the patients reported significantly less religiousness Research Group, Sheffield, GREAT BRITAIN, Committee for Palliative Care of Ministry of and less spirituality than American and German Sheila Payne, University of Sheffield, Sheffield, Health was held. In summer 2003 the new patients, depressive symptoms were GREAT BRITAIN, Jane Seymour, University of croatian law on health protection was issued significantly higher among them. German and Sheffield, Sheffield, GREAT BRITAIN, Margaret with many articles involving palliative care. The Israeli patients reported less wish to live than Lloyd, University of Sheffield, Sheffield, GREAT very actual problem of redesigning the homes American patients. The three groups did not BRITAIN for elderly and sick into the nursing home (we differ in the perceived meaning of disease. have not got any) with correspondent staff was Discussion: These first results suggest an Background: Facilitating patients’ end-of-life care approached by the ministerial Committee also. association between religious and spiritual choices has become a priority within the NHS in The education in palliative care is slowly getting beliefs and features of mental health at the end the United Kingdom. The health professionals academic status. The postgraduate malignant of life. Data analysis is still ongoing, prospective advocate ‘patient choice’ as the right of each pain course was held already four times. The data will allow further insights on these issues. individual but it is questionable whether all postgraduate course in palliative care for individuals particularly amongst the ethnic primary care physicians is held this year for the minorities share the same views on patients’ first time. Two guest professors for Abstract number: 47 autonomy. There is little evidence about Chinese undergraduate studies of Medical faculty, Presentation type: Oral people’s views on Cancer/palliative care choices Zagreb, were officially elected – Kathleen Foley Poster number: in relation to their culture and needs. Aims: To and David Oliver. At the High health school, explore the views of older Chinese people about Zagreb, there is the third year as optional “Amongst the peasants, food is placed cancer and palliative care choices. Method: A subject palliative care, finding its audience. as ‘the sky’” (Chinese proverb): older qualitative research study was undertaken in two Chinese people’s views on food and phases. Seven focus group discussions (n=46) end-of-life care were held at the Chinese community centres in Abstract number: 50 two different cities in phase 1, followed by semi- Presentation type: Oral Sheila Payne, Palliative & End-of-Life Care structured interviews with older Chinese people Poster number: Research Group, Sheffield, GREAT BRITAIN, (n= 26, Age range 50–80) in phase 2 of the Study. Alice Chapman, University of Sheffield, The discussions and interviews were conducted From Latin to local: How words for Sheffield, GREAT BRITAIN, Jane Seymour, in Cantonese or Mandarin and subsequently covering, curing and caring have moved University of Sheffield, Sheffield, GREAT transcribed and translated into English for beyond European borders of language, BRITAIN, Margaret Lloyd, University of analysis using the software NVIVO. Results: The location and lifetime in two millenia Sheffield, Sheffield, GREAT BRITAIN following themes were resulted from the data: *Majority of the older Chinese people in the Peter Whan, Chermside West, AUSTRALIA Background: Chinese cuisine has an studied groups did not know anything about international reputation and has spread globally Palliative care choices. *It was not evident that Background: The phrase ‘Palliative Care’ seems with the migration of Chinese people. Chinese this group of people viewed ‘having care choices’ to have first appeared in print in 1956. However, foods, herbs and other products feature strongly as the right of an individual or an important part words for palliation, curing and caring have for their therapeutic uses in Chinese traditional of health care. *Barriers to participating in been used in European languages for a very medicine. We know little about the perceived making Care choices included language, culture long time. Aim: This project aimed to trace the contribution of these products to end of life and beliefs, lack of information, education, history of such words as they have passed from care. People of Chinese origin make up unsuitable food and environment. Implications: language to language in Europe in the past two approximately 5% of all minority groups in the When promoting ‘patients choice’ it is important thousand years, and track the ways the ideas UK. They make little use of palliative care to consider the individual’s needs and expressed by these words have been applied in services but it is not known why. Aims: As part background and ethnicity. An important dealing with sick and dying people. Methods: of a large study exploring the views of older question to ask is ‘Whose and what choices?’ as Ancient and later documents in European Chinese people about cancer and palliative care, the older Chinese people in the study did not languages which contained references to we elicited their understandings of the role of regard participating in health care decision palliation, cure, or care were sought, especially food in cancer causation, cancer treatment and making as possible or appropriate. groups of documents linked in a chain of end of life care. Method: A qualitative research translation. Surgical texts written in Latin in study was designed, involving 7 focussed France, Italy and Spain, and translated into discussions with Chinese community groups Abstract number: 49 Middle English and Early Modern English were (n=46), and semi-structured interviews with Presentation type: Oral particularly useful. The documents were older Chinese people (n=25, age range 50–80). Poster number: examined to find the earliest identifiable uses of Data were collected in Cantonese or Mandarin, words cognate with ‘palliative’, ‘cure’ and ‘care’, transcribed and translated into English for Implementation of Palliative Care into the in English and other European languages, and constant comparative analysis using NVIVO existent health system in Croatia also to determine the way ancient, medieval software. Results: The analyses reveal that four and early modern authors viewed the concepts main themes account for the data: – Food as Ivanka Kotnik, Vice President of the behind such words. Results: The history of New ‘risky’. Some foods were linked to cancer Association, Zagreb, CROATIA-HRVATSKA, Testament translation reveals how words for causation-examples include fried food, spicy Anica Jusic, Croatian Society for curing, healing and caring have been used in food, pork, ‘strong’ food. – Food as Hospice/Palliative Care, Zagreb, CROATIA- Greek, Gothic, Latin, Anglo-Saxon, Middle ‘therapeutic’. Certain foods were regarded as HRVATSKA, Egidio Cepublic, Croatian English, German, French and Early Modern having therapeutic properties such as certain Association of Hospice Friends, Zagreb, English. The Middle English phrase ‘palliatyf herbs and special soup. – Food as supportive CROATIA-HRVATSKA cure’ was used to describe what would now be and comforting. Certain foods were regarded as called palliative treatment. Guy de Chauliac sustaining for very ill people such as ‘congee’ The Croatian Hospice Movement started in nominated three situations where ‘palliative (rice dish), fresh fruit juices. Moreover the 1994 on the background of very cruel war, with cure’ was an acceptable approach. Conclusion:

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 11 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

These documents show how we need: the capacity-building through The Canadian (implicitly or explicitly) and ended after the humility to see that many other people in other Pallium Project (Phase II) as part of its primary- patient’s death. Throughout the care process times and places have faced the issues we face; care renewal plan. The Project, which spans nurses paid special attention to the physical and the courage to question both the authority of across Western and Northern Canada, has three psycho-social support of the patients and their authors and our own preconceptions; and to major streams of activity. These include: A) relatives, primarily by informing and recognise that many surgeons have made a continuing professional development, encouraging them. Nurses underscored the great contribution to the art of healing as well workplace learning and knowledge importance of caring for themselves and their as the science of curing. management; B) system readiness; and C) nursing colleagues by paying attention to their service delivery. These streams recognize their personal conditions. Our findings indicate that interconnectedness in primary health reform. each stage of the euthanasia process requires Abstract number: 51 Sub-projects within stream A include the that nurses involved possess specific caring and Presentation type: Oral delivery of regional 2-day courses, an supporting competencies. Nurses’ willingness Poster number: introduction to PC in the context of aboriginal to personally care for these patients, in addition peoples, implementation of an online to their specific care expertise, allow them to be What is suffering for you? repository of learning objects (text, audio, video skilled companions of their patients requesting and modules) that can be shared and euthanasia. Vicente José de Luis Molero, Centro de repackaged for a variety of education formats Especialidades Coronel de Palma, (Palliative Learning Commons); web-based Mostoles/Madrid, SPAIN, Estrella Díaz courses and mini-courses for collaborative and Abstract number: 54 Hernández, Equipo de Cuidados Paliativos independent learning, a program of advanced Presentation type: Oral Domiciliario AECC, Móstoles/Madrid, SPAIN, skill education of health professionals and Poster number: Rosa Quibén Pereira, IMSALUD. Hospital de public education. In stream B, health policy Móstoles, Móstoles/Madrid, SPAIN, Mª Paz related to PC in rural and semi-urban regions is German physicians’ view on euthanasia Carrizo, Equipo de Cuidados Paliativos being studied with the aim of informing future Domiciliario AECC, Móstoles/Madrid, SPAIN, rural PC program development. Common Birgitt van Oorschot, Abteilung für Mª Ángeles Villa Vigil-Escalera, Equipo de outcome indicators are being established for the Strahlentherapie, Jena, GERMANY, Andrea Cuidados Paliativos Domiciliario AECC, health regions within the Project’s jurisdiction Tietze, Juristische Fakultät, Göttingen, Móstoles/Madrid, SPAIN and PC programs in these regions are being GERMANY, Nicole Nickel, Juristische Fakultät, evaluated using the Canadian Hospice and Göttingen, GERMANY, Volker Lipp, Juristische Objectives: To know what suffering is for each Palliative Care Association’s Square of Fakultät, Göttingen, GERMANY, Alfred Simon, one of the members of Programme of Palliative Organization. Workshops that engage Akademie für Ethik in der Medizin e.V., Care of the 8 Health Area of Madrid: patients, administrators and service providers have been Göttingen, GERMANY caregivers and health professionals. To compare implemented to foster dialogue and program the grade of suffering in terminal cancer development. Telephone information lines and The Germans distinguish several forms of patients with the suffering experienced by their clinical mentors for ongoing clinical support euthansia. Direct active euthanasia is caregivers and professionals. To search a and education make up stream C. In addition to prohibited, but indirect euthanasia (=alleviation possible relationship between suffering and describing the various sub-projects, preliminary of pain or other symptoms with possible life- pain. Method: Descriptive qualitative study results will also be presented. shortening effect) and passive euthanasia (= through two questionnaires drawn up by letting someone die) is possible and sometimes ourselves; one for patients (16 questions) and recommended. From the point of view of another for caregivers and professionals (18 Abstract number: 53 jurisdiction, both withholding and questions). Enrollment criteria: *Patients Presentation type: Oral withdrawing treatment are seen as passive enrolled in the Programme in two equal periods Poster number: euthanasia. We know less about physicians’ of 2003 and 2004 (from 1st March to 15th perception. Methods: Between October 2003 October) *These patients’ primary caregivers. The involvement of nurses in the care and May 2004 a standardized questionnaire was *Health Professionals involved in their care: process for patients requesting sent to a representative number of physicians in Service of Medical Oncology, Hospital Palliative euthanasia: a qualitative study in Thüringen, Bayern and Westfalen Lippe Care Unit, Home Palliative Care Unit and Flanders (Belgium) (n=1557, 419 specialists for anesthesia/intensive General Practitioners in charge of the medicine (AIs), 916 specialists for internal Programme. Exclusion criteria: *Patients with Nele De Bal, Centre for Biomedical Ethics and medicine (IMs) and 641 general practitioners cognitive impairment, Karnofsky index < 30 or Law, Leuven, BELGIUM, Chris Gastmans, Centre (GPs)). The professionals should assign several low standard education. *Caregivers with low for Biomedical Ethics and Law, Leuven, treatment/non-treatment options (all not active standard education. *Refusal to be interviewed. BELGIUM, Tina De Beer, Centre for Health euthanasia in the view of German judgement) *An early death that hindered the interview. Services and Nursing Research, Leuven, to different forms of euthanasia. A final *Uni and multivariate statistical analysis of the BELGIUM, Bernadette Dierckx de Casterlé, situation and patients’ wishes were results with the SPSS programme. (Preliminary) Centre for Health Services and Nursing precondition. Results: 710 questionnaires were Results: 1) Have you experienced any type of Research, Leuven, BELGIUM sent back (response 45,6 %, 277 GPs, 199 AIs, suffering these days? Affirmative answers: 234 IMs). 3,2 % of GPs, 1,0 % of AIs and 0,9 % Patients 60.0%, Caregivers 87.1%, Professionals Although nurses worldwide are confronted with of IMs said that alleviation of pain with possible 38.4% 2) Numeral evaluation (0–10) of euthanasia requests, the experiences of nurses life-shortening effect is active euthanasia. Non- suffering (m ± ds): Patients 5.25 ± 1.33; on their involvement in the care process treatment of pneumonia was considered to be caregivers 6.83 ± 1.45; professionals 4.42 ± 2.98 surrounding euthanasia remain unclear. To active euthanasia for 4,5 % of AIs, 4,7 % of IMs 3) Do you think physical pain is related to explore nurses’ experiences on their and 7,9 % of GPs. While withholding of suffering in any way? Affirmative answers: involvement in this care process, a qualitative artificial ventilation (AV) was seen as active Patients 53.31%, caregivers 51.4%, professionals Grounded Theory strategy was used. In euthanasia for 9,0 % of AIs, 9,4 % of IMs and 69.2%. Conclusions: *A high level of suffering anticipation of new Belgian legislation on 12,6 % of GPs, 37,2 % of GPs, 37,6 % of Ims and is reflected in all those who attend terminal euthanasia, we conducted one-on-one semi- 47,2 % or Ais said that withdrawal of AI is active cancer patients. *On the numeral scale (0–10), structured interviews with 15 nurses who were euthanasia. Withholding artificial fluid via the top grade of suffering is experienced by working in one of three general hospitals in vene (AF) was considered active euthanasia for caregivers (6,83); and then by patients Flanders (Belgium), were confronted with a 8,3 % of GPs, 12,4 % of IMs and 16,6 % of AIs. themselves (5,25) and professionals (4,42). euthanasia request, and were willing to 18,4 % of GPs, 26,9 % of IMs and 33,2 of AIs volunteer for an interview. Although euthanasia said that withdrawal of AF is active euthanasia. was still illegal, nurses unanimously stated that Conclusion: A remarkable part of physicians Abstract number: 52 they were personally and intensely involved in does not adopt the legal view on passive Presentation type: Oral the care for patients requesting euthanasia. euthanasia. There is a notable difference in the Poster number: Factors contributing to the difficult perception of withholding and withdrawing confrontation, characterized by powerlessness, treatment. Open communication is necessary. Improving Palliative Care (PC) in Primary could be classified into three categories: the Health: The Canadian Pallium Project as a euthanasia request, the nurse, and the nursing Change Agent care context. Differences between the experiences of palliative care and non-palliative Jose Luis Pereira, Division of Palliative care nurses were most obvious in the group of Medicine, Calgary, Alberta, CANADA, Michael contextual factors. Participants unanimously Aherne, Pallium Project, Calgary, CANADA stated that they had an important role in total care for patients requesting euthanasia. Their In November 2003, the Canadian Government involvement really began at the moment their made a multi-million dollar investment in PC patient formulated a euthanasia request

12 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 55 2001 and October 2004 all terminal sedated LCP proved to be helpful in evaluating relatives’ Presentation type: Oral patients were selected. For them section two of related problems around this special end of life Poster number: the LCP, ongoing assessment, was evaluated. treatment. Results: 45 patients (54%) died after a period of Public attitudes towards euthanasia in 33 TS, of whom 41 patients started with European countries. Socio-demographic midazolam (91%). All patients had a cancer Abstract number: 58 and cultural factors associated with the diagnosis. The median starting dose midazolam Presentation type: Oral justification of euthanasia was 2 (range 1–10) mg/h and a median bolus at Poster number: start of 3 (range 1–10) mg. After starting Joachim Cohen, End-of-Life Care Research midazolam, 93% of these patients needed Palliative sedation at the end of life. Group, Brussels, BELGIUM, Isabelle Marcoux, increase of the dose with a median of 3 (range Clinical integration of a palliative

VU University Medical Center, Amsterdam, 1–6) times, and 78% got rescues with a median care inpatient consult unit at a tertiary APRIL 8 FRIDAY NETHERLANDS, Johan Bilsen, Vrije Universiteit of 3 (range 1–12) times. The reasons for cancer hospital Brussel, Brussels, BELGIUM, Gerrit van der Wal, increasing the dose and/or giving rescues, were, VU University Medical Center, Amsterdam, according to the registrations by nurses, Augusto Caraceni, Rehabilitation and Palliative NETHERLANDS, Luc Deliens, Vrije Universiteit restlessness 79%, awakening 42%, pain 39%, Care, Milan, ITALY, Ernesto Zecca, National Brussel, Brussels, BELGIUM dyspnoea/respiratory tract secretions 37%, Cancer Institute of Milan, Milan, ITALY, Cinzia groaning 26%, opened eyes 24%, and fear 11%. Martini, National Cancer Institute of Milan, Objectives: To describe and compare the public The median of the highest dose midazolam was Milan, ITALY, Giovanna Gorni, National Cancer attitudes towards euthanasia in 33 European 8 (range 2–30) mg/h. A second sedative agent Institute of Milan, Milan, ITALY, Cinzia Brunelli, countries, and to examine the socio- (SSA), mostly propofol, was needed in 10 National Cancer Institute of Milan, Milan, demographic, socio-economic, and cultural patients (26%). There were one or more reasons ITALY factors associated with the justification or present to add the SSA, namely, restlessness rejection of euthanasia. Methods: We used the 50%, awakening 50%, pain 30%, groaning 30% Background: In-patient palliative care European Values Survey data of 1999–2000 with and dyspnoea/respiratory tract secretions 10%. consultation units (PCCUs) often provide end- a total of 41,125 respondents (63% response In 90% of these patients sedation was achieved of-life care in advanced patients admitted to rate) in 33 European countries. The main within 30 min. Conclusion: Almost all patients oncology wards. Aim of this study was to review outcome measure of our study concerned the needed changes in the course of the treatment the experience of a PCCU at a tertiary cancer moral justification of euthanasia (rated on a by midazolam, with restlessness as the most center in managing end-of-life care and the role scale from 1 to 10). A multivariate ordinal prevalent reason. The prescriptions were of terminal or palliative sedation (PS). Methods: regression was performed to examine the readjusted based on nurses’ observations. All cases referred to the PCCU from 1999 to determinants of attitudes towards euthanasia. A 2003 were reviewed to assess frequency, weight factor corrected for socio-demographic indications and outcome of PS and to compare characteristics within countries and for the Abstract number: 57 the characteristics of patients with indication to population size of countries. Results: The Presentation type: Oral PS and of patients without indication to PS. justification of euthanasia by the general public Poster number: Results: In a 5-year period 2033 patients were (expressed in mean scores; 95% CI) tended to be referred to the PCCU for pain and symptom high in countries as the Netherlands (6.69; Main problems of relatives after starting control. Over 160 patients, who died after being 6.52–6.85), Denmark (6.61; 6.41–6.81), France terminal sedation referred to the PCCU, 13 died suddenly, 18 died (6.16; 6.02–6.30) and Sweden (6.07; 5.90–6.25). in the intensive care unit (ICU) and 129 were A markedly high opposition to euthanasia was H Van Veluw, Medical Oncology, Rotterdam, followed by our unit until death. Indication to found in Malta (2.23; 2.09–2.37) and in Turkey NETHERLANDS, CCD Van der Rijt, Erasmus PS was given in 83 cases (64% of 129). No (2.78; 2.61–2.95). The mean score in all 33 MC-Daniel den Hoed Cancer Center, differences in primary disease, hospital survival European countries together was 4.71 Rotterdam, NETHERLANDS, Y Schrofer, and disease progression were seen between the (4.67–4.74). Of all respondents 13.0% felt that Erasmus MC-Daniel den Hoed Cancer Center, group with indication to PS and the group euthanasia was always justified, 31.2% never. Rotterdam, NETHERLANDS, A Moonen, without indication to PS. PS was associated with Factors associated with the justification of Erasmus MC-Daniel den Hoed Cancer Center, delirium and dyspnea (P < 0.05). Morphine euthanasia were age, marital state, socio- Rotterdam, NETHERLANDS, L Van Zuylen, dose escalation was higher in the patients who economic status; religious and moral value Erasmus MC-Daniel den Hoed Cancer Center, were sedated before PS was started (P < 0.01). PS orientations; and country-specific differences. Rotterdam, NETHERLANDS was successful in 69 patients. Midazolam was Conclusions: A liberal stand towards euthanasia the most frequently used drug (46%) followed was found in many European countries. Introduction: In 2001 the Liverpool care by haloperidol (40%) and chlorpromazine Although diversity between individuals was pathway for the dying phase (LCP) was (35%). In 14 cases failure of PS was associated found, associated with socio-economic and introduced into the Palliative Care and with a lack of communication or of clinical socio-demographic factors and in large amount Symptom Control Unit, to structure the care of integration between PCCU staff and other by religious and moral value orientations, the the dying and the communication with them hospital staff. All the 18 patients referred to the attitude towards euthanasia often seemed to be and their relatives. The professionals should ICU died there, survival was comparable with very country-specific. record variances in outcomes on the pathway. the other patients and most of them were also The LCP was used to evaluate the problems sedated. Admission to the ICU was never relatives haunt after starting terminal sedation discussed with the PCCU staff. Conclusions: PS Abstract number: 56 (TS). Method: Of the 83 patients who died on is frequently needed in the management of Presentation type: Oral the LCP between October 2001 and October refractory symptoms due to advanced cancer at Poster number: 2004 all terminal sedated patients were selected. the end of life. PCCU management of PS at a For them section one, initial assessment, and tertiary cancer center in collaboration with Reasons for dose changes after starting section two, ongoing assessment, of the LCP oncology hospital staff was feasible in most terminal sedation were evaluated with respect to relative items. cases, but better integration and organization of Results: 45 patients (54%) died after a period of services can improve outcome. L Van Zuylen, Medical Oncology, Rotterdam, TS. All patients had a cancer diagnosis. The NETHERLANDS, H Van Veluw, Erasmus MC- decision to start was made with the informed Daniel den Hoed Cancer Center, Rotterdam, consent of the patient and their relatives (67%) NETHERLANDS, CCD Van der Rijt, Erasmus or relatives only (33%). After starting TS two MC-Daniel den Hoed Cancer Center, main issues for the relatives could be Rotterdam, NETHERLANDS, T Tlam, Erasmus distinguished. Concerning the aim of the TS, in MC-Daniel den Hoed Cancer Center, 27% of the patients, the relatives needed Rotterdam, NETHERLANDS, E Pragt, Erasmus repeatedly explanations, and in 73% not. MC-Daniel den Hoed Cancer Center, Regarding the course of the TS, in 42% one or Rotterdam, NETHERLANDS more issues were discussed once or more often. These consisted of uncertainty about relief Introduction: The Liverpool care pathway for (37%), requests to diminish suffering (32%), the dying phase (LCP) was introduced into the disputes about the treatment (26%), concerns Palliative Care and Symptom Control Unit in about the length of suffering (26%), patients’ 2001. The professionals should record variances suffering being unbearable to watch (21%) and in outcomes on the pathway. The LCP was used expressions of exhaustion about the duration of to evaluate how often and why the dose of the deathbed (16%). Conclusion: The founded midazolam had to be readjusted in the course of reactions demonstrate explicitly the need of terminal sedation (TS). Method: Of the 83 information and professional guidance during patients who died on the LCP between October the course of TS. Documenting according to the

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 13 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 59 for these patients may fear ‘empire building’ by of M6G is significantly attenuated relative to Presentation type: Oral palliative care, and their patients may not want that of morphine. High concentrations of M6G Poster number: to be be referred to services associated with in the brain may account for the durable terminal cancer. Educating others in the availability of M6G to opioid receptors. A comparison of the practice of terminal principles and practice of palliative care is Furthermore, a 3-fold slower rate of elimination sedation and euthanasia in the therefore important, as is partnership working of M6G compared to morphine has been Netherlands with, for example, family doctors, geriatricians demonstrated (1). M6G has analgesic effects in and cardiologists. Many (but not all) non-cancer humans, but its potency compared to morphine Judith Rietjens, Department of Public Health, patients are older, and improving palliative care has not been established. A critical clinical issue Rotterdam, NETHERLANDS, Johannes van in nursing homes is therefore important. There is the contribution of M6G to the analgesic Delden, Julius Center, University Medical is little evidence to date that hospice and action seen after long-term morphine Center Utrecht, Utrecht, NETHERLANDS, Agnes palliative care services benefit non-cancer administration. Animal studies have found that van der Heide, Department of Public Health, patients. Demonstration projects are therefore M3G administered by the i.t. route produces University Medical Center Rotterdam, needed, with careful evaluation so we can learn symptoms of sensory and motor excitation (2). Rotterdam, NETHERLANDS, Gerrit van der Wal, what works best, and how best to how ensure Clinically, hyperalgesia, allodynia and Department of Public and Occupational Health that all can die well, regardless of disease or myoclonus have mostly been observed in and Institute for Research in Extramural setting. cancer patients treated with high doses of Medicine, VU University Medical Center, morphine administered by several different Amsterdam, NETHERLANDS routes (3). In reports describing these symptoms Abstract number: 62 very high plasma levels of morphine and M3G Background: It is unclear to what extent Presentation type: Invited as well as accumulation of M3G relative to terminal sedation (defined as the Poster number: morphine or M6G has been demonstrated (3). administration of drugs to keep the patient 1. Stain-Texier F, Boschi G, Sandouk P, continuously in deep sedation or coma until Opioids, pain and the immune function Scherrmann JM. Elevated concentrations of death without giving artificial nutrition or morphine 6-beta-D-glucuronide in brain hydration) is or can be used as an alternative to Paola Sacerdote, Pharmacology, Milano, ITALY extracellular fluid despite low blood-brain euthanasia (defined as administering a lethal barrier permeability. Br J Pharmacol 1999; 128: drug at the explicit request of a patient with the In the bidirectional network existing between 917–924. 2. Yaksh TL, Harty GJ. Pharmacology explicit intention to hasten death). We studied the nervous and the immune system a pivotal of the allodynia in rats evoked by high dose clinical differences and similarities between role is played by the strict links existing between intrathecal morphine. J Pharmacol Exp Ther terminal sedation and euthanasia in the opioid receptors and ligands with cytokines and 1988; 244: 501–507. 3. Sjøgren P, Thunedborg Netherlands, where both practices are legal. immune cells. These interactions take place at LP, Christrup L, Hansen SH, Franks J. Is Methods: Personal interviews were held with a multiple levels. In the brain, the presence of a development of hyperalgesia, allodynia and nationwide stratified sample of 410 physicians functional cytokine system is important in myo-clonus related to morphine metabolism (response: 85%) about the most recent case in order to have the development of functional during long-term administration? Acta which they used terminal sedation (n=211) or opioidergic pathways regulating Anaesthesiol Scand 1998; 42: 1070–1075. performed euthanasia (n=123). We compared antinociception. For example a series of studies characteristics of the patients, the decision have shown that in the IL-6KO animals and in making and medical care between both the IL-1KO animals an impaired development Abstract number: 64 practices. Results: Terminal sedation and of the endogenous opioidergic system is Presentation type: Invited euthanasia mostly concerned patients with present. Moreover in these animals the Poster number: cancer. Patients receiving terminal sedation responses to morphine and the development of were more often anxious (37%) and confused tolerance to morphine antinociception are CYP2D6 Genetic Variability and Efficacy (24%) than patients receiving euthanasia (15% altered. Central IL-6 and IL-1 are therefore of Analgesics and 2%, respectively). Euthanasia requests were involved in the development of neuronal mostly the result of the patients’ sense of loss of mechanisms involved in the response to both Ulrike Stamer, Klinik und Poliklinik für dignity and independency, suffering without endogenous and exogenous opiates. In the Anästhesiologie, Bonn, GERMANY, Eberhard chance of improving, and invalidity, whereas periphery, cells of the immune system produce Klaschik, Malteser Krankenhaus Bonn, Bonn, requesting terminal sedation was more often and release opioid peptides that can participate GERMANY, Frank Stüber, Rheinische Friedrich- related to severe pain. Physicians applying in peripheral antinociception. On the other Wilhelms-Universität Bonn, Bonn, GERMANY terminal sedation estimated that the patient’s hand, it is well known that opioids significantly life had been shortened by more than one week affect the functionality of many immune cell The human genome project has revealed data in 27%, as compared to 73% in euthanasia types, binding both opioid receptors in the on genomic variation which may influence the cases. Conclusions: Terminal sedation and brain and those on immune cells. Endogenous pharmacological responses. In pain therapy, the euthanasia cannot be seen as two mutually opioids are fine modulators of immune genetic background influencing the efficacy of exclusive practices: both are often applied to responses by skewing the Thelper (Th)1/Th2 opioid therapy is of special interest. Screening address severe suffering in terminally ill cancer balance towards Th2. On the contrary, the for variations in expression of drug patients and both can have a life-shortening administration of morphine at pharmacological metabolizing enzymes has been suggested as a effect. However, terminal sedation is typically doses leads to a generalised potential tool for improving patient therapy. used to address severe physical and immunosuppression. During chronic treatment CYP2D6 genetic variability is supposed to be a psychological suffering in dying patients, it has to be taken into consideration that major factor of adverse drug reaction, possibly whereas loss of dignity during the last phase of tolerance to the immune effects of morphine influencing hospital stay and total costs. life is a major problem for patients who request develops at different moment for the function Polymorphisms within the cytochrome P450 euthanasia. considered. The final impact on the immune 2D6 have been associated with a poor system can vary depending on the duration of metabolizer phenotype and display a frequency treatment. In conclusion, it is clear that the of about 10% in the Caucasian population. Abstract number: 61 elucidation of the many interactions between Several commonly used drugs like beta- Presentation type: Invited opioids and immunity can have a great blockers, anti-arrhythmic drugs, 5HT3- Poster number: relevance for the better comprehension of the antagonists, tricyclic antidepressants, opioids physiological basis of antinociception as well as and others are metabolized by this enzyme. Palliative care in chronic conditions: for a better pharmacological approach to pain. Furthermore, inhibitors of CYP2D6 like extending our borders amiodarone and cimetidine might block metabolization of CYP2D6 dependent drugs. Julia M Addington-Hall, School of Nursing and Abstract number: 63 Poor metabolizers for CYP2D6 show a lower Midwifery, Southampton, GREAT BRITAIN Presentation type: Invited response rate to codeine and tramadol analgesia Poster number: than individuals with at least one wild type There is growing evidence that people who die allele (1, 2). Therefore, CYP2D6 genotype has an from, for example, heart failure, respiratory Clinical implications of impact on pharmacological response to drugs disease, renal disease and neurological morphine metabolites metabolized by this enzyme system. Further conditions have unmet palliative care needs at candidate genes involved in pain perception, the end of life. Hospice and palliative care Per Sjøgren, Pain Center, Copenhagen, pain processing and pharmacogenetics like services are often wary about caring for these DENMARK opioid receptors, transporters and other targets patients because they fear they lack the skills of pharmacotherapy are under investigation. they need, because they fear being Animal studies have demonstrated that, the Aspects of genetic differences influencing overwhelmed (partly because of prognostic analgesic potency of M6G is several times efficacy, side-effects and adverse outcome of uncertainty beyond cancer), and because of higher than morphine after intrathecal (i.t.) pharmacotherapy will be of importance for funding concerns. Health professionals caring injection indicating that the brain penetration future pain management. References: 1. Stamer

14 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

UM et al. Pain 2003; 105: 231–238. 2. Poulsen L borderland between community and health marking the dying process; improved et al. Eur J Clin Pharmacol 1996; 51: 289–295. care sectors will be discussed. Nursing home teamwork; critically using palliative care Grant: The study was supported in part by a referrals is not always based on a rigorous needs knowledge to improve practice; and, deeper and grant of the Richard-Sackler Research assessment and the problems of this more meaningful communication) that Foundation. organizational model in terms of competence, emerged from the data as a result of the project. organization and payment will be discussed. Staff in the nursing homes were given greater confidence to acknowledge death and dying as Abstract number: 65 an important part of nursing home care, and Presentation type: Invited Abstract number: 67 helped to bring a greater holistic view of care to Poster number: Presentation type: Invited the residents and their families. Poster number:

Genetic variability of the APRIL 8 FRIDAY mu-opioid receptor The work of clinical nurse specialists in Abstract number: 69 palliative care with nursing homes in the Presentation type: Invited Pal Klepstad, Dept. Intensive Care Medicine, Republic of Ireland Poster number: Trondheim, NORWAY Julie Ling, IRELAND Prognostication in Advanced Cancer: Clinical studies have shown no or low Ethical Perspectives associations between serum concentrations of The Republic of Ireland has a relatively young morphine and M6G and clinical outcomes. population with only 11.5% of the population Bert Broeckaert, BELGIUM These results suggest that the interindividual aged 65 or over and of these approximately 5% variability in morphine efficacy is related to are in long-term residential care. As a result of When discussing the ethical issues concerning variations in the way morphine and M6G changing demographics this figure is set to rise. prognostication, it is important to realise that interacts with the mu-opioid receptor. Several As populations age and more people end their prognostication entails three rather different polymorphisms have been demonstrated lives in residential care settings, this area of care aspects: a prognosis is established, used and within the mu-opioid receptor gene. One of has increasing relevance. A recent study in the communicated. All three aspects entail their these variants (position 268 amino acid change United Kingdom (UK) assessed the input of own ethical dilemmas. Several arguments can serine to proline) near abolish receptor community clinical nurse specialists in and will be given, however, that clearly signaling after stimulation with opioids. palliative care to nursing homes. The study demonstrate that, though physicians often feel However, because of its low frequency the presented is a replication of this work. uncomfortable when formulating prognoses, in contribution from this SNP to the population The aim of this work was to assess the current most cases establishing a prognosis is both variability is limited. A more common SNP is a level of input of community-based clinical necessary and inevitable, that poor position 118 nucleotide A to G substitution. nurse specialists in palliative care to nursing prognostication or a refusal to prognosticate can Volunteers with this polymorphism are shown homes in the Irish Republic. Questionnaires have dire consequences and thus be very to have decreased pupillary constriction after were distributed to all community-based unethical. Once established, a prognosis should M6G administration. Furthermore, cancer palliative care clinical nurse specialists via the of course be used in an appropriate way. We will patients homozygous for this variant will need National Council for the Professional argue that treatment decisions are and should about twice the morphine doses as wild type Development of Nursing and Midwifery be based on a number of variables, including patients for adequate pain relief. For three other database. The total population of 114 prognosis, and that all these variables should polymorphisms of the mu-opioid receptor gene community-based clinical nurse specialists in receive and continue to receive due attention. present in clinical relevant frequencies (–172 palliative care were approached and 63 The fact that prognostic information is per G>T, Ivs2 + 31 G>A, Ivs2 + 691G>C) there is no completed questionnaires were returned definition probabilistic and that even the very evidence suggesting that these variants achieving a 55% response rate. best prognostication will be dramatically influence morphine efficacy. Genetic variability This session will focus on the findings of this inaccurate in a significant number of cases, in the mu-opioid receptor gene can be caused study and will compare the findings from the provides in our view an additional reason for by mechanisms other than polymorphisms. UK with those from the Republic of Ireland. rejecting prognostication, state-of-the-art Animal studies have identified that differences though it may be, that is not deeply embedded in selection of exon regions during translation in an open, flexible, patient-centered and to mRNA give multiple mu-opioid receptor Abstract number: 68 dialogical approach. When not put in this variants (splice variants) that may be Presentation type: Invited broader perspective, guidelines on responsible for varying analgesic response and Poster number: prognostication in advanced cancer patients adverse effects from morphine and M6G. can have an adverse impact. As far as prognosis Moreover, experimental studies in animals have Using an ‘integrated care pathway for the communication is concerned, we will argue shown that antisense targeting of specific exons last days of life’ as a way of developing that, though the patient has a right to be in the mu-opioid receptor gene has a different quality end of life care in nursing homes informed about his prognosis, there is no such influence on antinociceptive effects of various thing as a patient’s duty to be informed. When opioids, including morphine and M6G. Mu- Jo Hockley, Education, Edinburgh, GREAT prognosis is communicated, cultural, religious opioid receptor splice variants have also been BRITAIN, Julie Watson, St Columba’s Hospice, and psychological considerations are highly demonstrated in the human brain. It will be of Edinburgh, GREAT BRITAIN, Belinda Dewar, relevant, as avoiding additional harm to the interest to see if such splice variants can explain Queen Margaret University College, Edinburgh, patient is of crucial importance here. the variable effects from different opioid GREAT BRITAIN substances. Nursing homes are now becoming a place of Abstract number: 70 care where older people die. One in five older Presentation type: Invited Abstract number: 66 people will die in a nursing home in the UK. Poster number: Presentation type: Invited Education has been one way of developing Poster number: nurses/care assistants palliative care knowledge Methodological issues in prognostic in these settings. However, nurses have found it factors studies The place for nursing homes in difficult to bring about the necessary change in palliative care practice. In the final phase of a larger action Cinzia Brunelli, Rehabilitation and Palliative research study, an integrated care pathway [ICP] Care Unit, Cancer Institute, Milan, ITALY Carl Johan Fürst, Stockholm, SWEDEN for the last days of life based on the LCP (Liverpool Care Pathway) was implemented and There are nowadays no widely agreed criteria for In most societies there is an increasing fully evaluated as part of a multi-faceted project assessing the methodological quality of prevalence of patients with cancer and an to develop quality end of life care in eight prognostic studies. The presentation will deal increasing cancer incidence compared with a independent nursing homes. The LCP for the with methodological aspects that are likely to reduction of oncology and other hospital beds. last days of life is a framework based around the be important in establishing the validity of There is an increasing number of cancer available evidence of quality end of life care. studies dealing with prognosis. The attention patients and cancer deaths in nursing homes. This session will look at what ‘hindered’ and will be focused on prognostic research in Palliative care in nursing homes will be what ‘facilitated’ implementation of the ICP palliative care and specific problems will be discussed in the perspective of the WHO 1990 documentation across the nursing homes. It examined: and 2002 definitions. The need for team-based will pay special attention to the important part ● Target population definition and sample palliative care is sometimes evident in this played by the ‘context’, and ‘facilitation’ of any selection patient group but for many patients the project when trying to implement evidence into ● Study design palliative care needs are more intermittent and practice. It will also discuss the five themes ● Sample size issues treatment related. In this presentation some (greater openness around death and dying; ● Definition, measurement and availability of aspects of the Swedish experiences from this taking responsibility for recognising and prognostic variables

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 15 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

● Confounding factors of survival, biological factors, clinical signs and Abstract number: 75 ● Analysis methods symptoms and psychosocial variables, and Presentation type: Invited ● Results presentation prognostic scores. Only studies on patients with Poster number: The consequences of the heterogeneity and advanced cancer and survival

16 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 77 quality interdisciplinary teamwork that enforces Abstract number: 81 Presentation type: Invited care possibilities. An important goal to Presentation type: Oral Poster number: stimulate and help implement the palliative Poster number: care philosophy in the regular care. The team of Palliative care networks : a network is multidisciplinary. Team members The assessment and response to needs challenges and pitfalls are nurses, GPs , a social worker, a psychologist among informal carers: findings from a and administrators. They all have the expertise closed file audit André Rhebergen, Director, Bunnik, to recognize and reduce needs in palliatieve care NETHERLANDS of patients and their family. They give support Celia Leam, Social Work, London, GREAT to the caregivers working in hospitals, eldery BRITAIN, Richard Harding, Dept of Palliative Networks can be described as organisations homes, at home when they ask for it. Every year Care & Policy, King’s College London, London,

and/or persons working together to realise one the network present education of the basic and GREAT BRITAIN APRIL 8 FRIDAY or more specific aims. This raises questions on advanced level in palliative care and this for participants (who), goal (why), tasks (what) and different disciplines. It is a continual task to Aims: Although palliative care aims to improve functions (how). The organizational theory of recruit and support volunteers. outcomes for informal carers, their needs networks can help clarifying some of the general Evaluation/ the use and benefit of networks : remain high and largely unmet. This study and more specific problems palliative care study of colleague Trudie Van Iersel, Brugge aimed to audit carers’ self-identified needs, in networks might face. On the organisational level Belgium concerning the Flemish networks. order to inform an audit cycle and ensure that a palliative care network will improve Development of the networks: A network of interventions reflect carers’ priorities, taking understanding and coordination between the palliative care is a particular organisational account of existing coping strategies. Methods: organisations, thus creating a palliative health structure to stimulate and improve knowledge Data was extracted from 145 random closed care chain from hospital, specialized palliative about palliative care in the society. For the files of patients receiving hospice care at home care organisations like units or hospices to home government it is clear that it is a right of every over a 6-month period in London, UK. care. The network will manage the patient flow. citizen in Belgium to receive good palliative care Assessment notes were thematically coded and On the professional level a palliative care when needed. Networks have the task to ranked according to domains developed from network will improve understanding and support patients, their families and all an initial pilot extraction of 10 files and coordination between the professionals working caregivers involved in palliative care. Since 1992 subsequently refined. Results: 70% of patients in the different settings, thus creating optimal there is an evolution in consultating networks. (n=100) had an identified informal carer. patient care on an individual patient level. For Palliatieve Hulpverlening Antwerpen v.z.w. Primary changes reported by carers were: loss of Palliative networks have two important tasks: 1. it’s still a challenge to practise the emancipatory independence and reduced social activities; Provide care and skills to the patient, to make it caremodel to offer support in care. anxiety and depression; significant changes in possible that the patient receives optimal care at domestic roles and employment; relationship home. 2. If this is no longer possible, provide difficulties with the patient. Existing coping specialized palliative care beds where the patient Abstract number: 79 strategies reported by carers were: family and can die. Ideally a palliative network realizes Presentation type: Invited friends; stress reactions (e.g. anger, crying, cooperation on both the professional and the Poster number: smoking); employment and activity. The rank organisational level, and performs both tasks. order of unmet needs and issues presented by There are different network solutions possible, Netzwerk Palliativmedizin Essen: network carers were: financial difficulties (n=64); general depending on regional and cultural project for the implementation of support needs (n=36); anxiety and depression circumstances, financial arrangements and palliative care at different levels in (n=29); respite (n=27); practical help (n=17); policy. However, since networks in most cases accordance to the patients needs fatigue (n=13); children and young people are more a loose construct than a formal (n=12); physical care (n=12); personal organisation, the question of coordination and Marianne Kloke, Kliniken Essen-Mitte, Essen, relationship tensions (n=12). Conclusions: That control is the major challenge for all palliative GERMANY 70% of patients had an identified informal carer care networks. The session on palliative care suggests a need for significant resource networks will offer help in finding answers in Background: 2001, heads of oncology allocation to this high need population. describing experiences with palliative care departments initiated a working group for PC. Multiprofessional support is required to meet networks in different countries. 1. Participating First, a consensus about the concept of PC was the full range of self-identified needs. These partners 2. Tasks of the network 3. Activities 4. elaborated: Basic PC should be ubiquital were responded to by hospice staff, but further Evaluation studies of the network 5. The use of available and integrated into routine work. research is required to establish the specific networks: 6. Development of networks: state of Qualified PC can be delivered by nurses and methods of intervention and their relative the art; what was stimulating, what not. physicians who underwent additional curricular effectiveness in resolving carers’ needs. Carers and continuing training. A prerequisite for the and their needs can be identified, but good ‘specialized’ level is the licensed practice requires the continuing development Abstract number: 78 transprofessional team working within a of assessment tools and protocols for systematic Presentation type: Invited specialized institution for PC. Second, curricular accurate assessment and recording of need and Poster number: education in PC was started. Member of all timely appropriate staff responses. professions contributing to PC developed the Palliative care networks: challenges concept of a regional network. This project and pitfalls ‘Netzwerk Palliativmedizin in Essen’ was Abstract number: 82 granted by the Alfried Krupp von Bohlen und Presentation type: Oral Tine De Vlieger, UA/campus Drie Eiken/gebouw Halbach-Stiftung and started in November Poster number: S 1ste verdieping 2003. Structure and strategy: Hospital support teams (HST) consisting of a ‘qualified’ nurse A pilot study to assess the effectiveness of Introduction: A network for palliative care is a and a physician have been installed at each a palliative care clinic in improving the platform for caregivers. The meantask is to hospital in order to offer qualified PC and to quality of life in patients with severe stimulate and to built out good palliative care implement basis PC in their institution. A data heart failure for the region the network is responsible for. In bank with important in formations for daily Belgium the government started to install 28 work has been processed with access to all HST. Paul Paes, Palliative Medicine, Oxford, GREAT networks since 1992. Palliatieve Hulpverlening The local HST are supported to develop a BRITAIN Antwerpen v.z.w. is one of the 15 Flemish tailored to measure concept for their institution networks. This network has a particular way of by the leading group (LG). The LG consists of 6 Aim: To assess the effectiveness of a palliative offering help. Basic is the practise of the elected and 3 delegated persons representing care clinic in improving the quality of life in emancipatory caremodel. The government give the different professions as needed in PC. In patients with severe heart failure. Method: a slight financial support. Therefore, they order to provide continuous PC a 24 hours Patients with NYHA III or IV heart failure were expect registration of the activities every year hotline for local physicians and nursing services randomised to 2 groups. The intervention group and bring visits for a regular evaluation. has been installed with round the clock backup attended a palliative care clinic for 6 months as Tasks of the network: Its task is multiple: by specialists in PC. Transprofessional palliative well as their normal cardiology follow-up. The sensibilisation, stimulate co-operation between conferences are conducted on a regular basis (5 control group continued with their normal care organisaties and caregivers, to give support a year). The minutes of these conferences are cardiology follow-up. Both groups completed 3 to every caregiver (professionals and non- the basis of ongoing quality assurance. The questionnaires (EORTC QLQ-C30, Kansas City professionals) wherever they work, to improve policy is to stick to international recognized cardiomyopathy and HADS scales) at the start skills and knowledge in palliative care, to install recommendations or publications and to and end of the study to see if there were any and manage a platform of volunteers, to do or transcribe them successively into an proper differences between the 2 groups. The help scientific research. ‘recommendation book’. All these activities are intervention group also filled out feedback Activities: It is a challenge for the team of the coordinated by an office with two employees forms. Results: 16 patients agreed to take part, 9 network to create a teamspirit that leads to high with specific education in PC. completed the study. There were no statistically

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 17 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

significant results. However, patients in the delivered in 85% (pu), in 78% (hc) and in 53% In the late 1980s, several individuals and intervention group did better than the control (hw) respectively. Pain control was estimated organizations across Canada recognized that group with regard to anxiety, depression, fatigue, ‘very good’ in 85% (pu), 64% (hc) and 58% there was no common language and no widely- nausea, pain, constipation and most quality of (hw). 86% of proxies replied that their relatives accepted standards to guide either hospice or life scores. The control group did better in one died without severe pain (pu), compared with palliative care practice. From 1989 to 2002, a symptom score, dyspnoea. Conclusions: This 79% (hc) and 76% (hw). Conclusion: Proxies are precedent-setting, iterative consensus-building pilot study suggests that patients attending the a vital source of information for dying cancer process involved thousands of stakeholders. In palliative care clinic may have experienced an patients. In a retrospective observational study 2002, once >75% agreement was reached, a improved quality of life compared to the control they described distinctions in the quality of care nationally-accepted ‘Model to Guide Hospice group. However this would have to be carried depending on different places of death. In view Palliative Care’ was published by the Canadian out as a full-scale study to achieve statistically to medical care, nursing care and symptom Hospice Palliative Care. It included definitions significant results. Patient feedback about the control, a specialist palliative care unit was for many commonly used terms, and suggested clinic was overwhelmingly positive. superior to a home care setting, followed by values, principles and norms of practice to guide regular hospital care. organizational development and care delivery. Since ‘The Model’ was published in 2002, it has Abstract number: 83 been endorsed by all of the major hospice Presentation type: Oral Abstract number: 85 palliative care associations and several national Poster number: Presentation type: Oral medical organizations in the country; it is being Poster number: adopted and adapted by many individual hospice Daycare in palliative medicine: palliative care providers; it is forming the basis patients wishes ALL PATIENT REFINED-DIAGNOSTIC for multiple health care initiatives to expand RELATED GROUP (APR-DRG) AND CASE palliative care services, and multiple educational, Hanna Ludwig, Abteilung für Schmerztherapie MIX INDEX (CMI) IN AN ACUTE research and advocacy activities; it is being und Palliativmedizin, Remscheid, GERMANY, PALLIATIVE MEDICINE UNIT adapted to produce companion standards of Charles Daniels, St. Luke’s Hospice Harrow, practice for nurses (through the Canadian Nurses London, GREAT BRITAIN, Uwe Junker, Sana- Declan Walsh, Hematology/Oncology, Association), for social workers/counsellors, for Klinikum, Remscheid, GERMANY Cleveland, OH, U. STATES, Ruth Lagman, The volunteers, for pediatrics, for provincial and Cleveland Clinic Foundation, Cleveland, U. national norms of practice for hospices, and for In England, many hospices are running a STATES, Mellar Davis, The Cleveland Clinic hospital and long-term care accreditation daycare-unit. Patients are invited to stay once or Foundation, Cleveland, U. STATES, Susan (through the Canadian Council on Health twice a week for the whole day in a special area LeGrand, The Cleveland Clinic Foundation, Services Accreditation). All of this activity of the hospice. They receive medical treatment Cleveland, U. STATES strongly suggests that the process of developing a (eg. transfusions, pain therapy, nationally accepted ‘Model to Guide Hospice wounddressings), but also simply loving care Background: The All Patient Refined-Diagnostic Palliative Care’ and the product can provide a and entertainment. We wanted to know Related Group (APR-DRG) is a modification of significant focus, the content and the energy whether the patients come to daycare because the traditional DRG and includes four classes of needed to motivate policy-makers, regulators, they want easy access to the health severity of illness and four classes of risk of administrators and clinicians to change palliative professionals, meet other people with the same mortality. This presents a more accurate care delivery for patients and families. problems or prefer different offers of the assessment of the complexity of care patients hospice (eg.massage, art-therapy, beauty- need. When individuals with advanced illness treatment). 48 patients returned our short are admitted to an acute inpatient palliative Abstract number: 87 questionnaire, mean age 73 years, 45 diagnosed medicine unit there may be a perception that Presentation type: Oral with cancer. Their answers show that it is as they get less intense acute care. Our experience Poster number: important to have medical treatment as is that most patients are multisymptomatic, meeting other people. One explanation for this have several comorbidities and are older. The invisible force: volunteers in palliative might be the old age. The appointment in Methods: We prospectively compared DRGs and care, who and why? daycare is very often the only opportunity for APR-DRGs from January 1 to June 30, 2003 and our patients to leave the house. From the February 1 to July 31, 2004. A template/guide Philippe Helaers, Palliative Home Care, St- physician’s view daycare for palliative patients is was followed by staff physicians to document Niklaas, BELGIUM, H Baerten, B Clicteur, T van a very good way to build up a close relationship clinical information that included sites of Iersel, A-S Masureel, C Pintens, J Menten, J and to realize and treat imminent problems. malignancy, site of metastases, complications, Bossers, Workgroup Research, FPCF, Prof. MD, symptoms and comorbidities. In addition to the Chairman FPCF,MD primary site of malignancy, sites of metastases Abstract number: 84 included bone, brain, lung, and lymph nodes Background: Palliative home care in Belgium Presentation type: Oral etc. Examples of common complications of depends on, and sometimes can only be of high Poster number: advanced disease are hypercalcemia, pathologic quality by the support of many involved active fracture and spinal cord compression. Pain, volunteers. But what do we know about them? Judging the quality of care at the end of dyspnea, nausea, vomiting and constipation are Objectives: The challenge was to provide visible life by proxies: comparison between a examples of symptoms. Comorbidities included data on who (number, gender, age, profession) specialist palliative care unit, a home care hypertension, diabetes mellitus (types I and II), they are and what their main motivation might setting and regular hospital care anemia (iron deficiency or chronic disease be. This would give us the opportunity to etiology). Results: The number of cases seen identify one of the most valuable disciplines in Dietmar Beck, Palliative Care Unit, Göttingen, were 305 in 2003 and 302 in 2004. The overall palliative care and makes it more feasible to GERMANY average severity of illness increased 19%. Mean validate their engagement. Another issue is to length of stay decreased from 9.11 to 8.88 days. see if there were significant differences between Background: Prospective studies on ascerting the Mean direct cost per case increased $573. the task description in the 15 networks. Setting: quality of life of dying patients prior to death are Conclusion: Better documentation of clinical Flanders Design: A questionnaire to assess both fundamentally biased as they only represent the findings for patients with advanced disease profile and motivational data. Participants: proportion of patients who are relatively well admitted to an acute inpatient palliative Volunteers active in the 15 networks of and therefore able to participate. To overcome medicine unit reflected a more accurate severity palliative home care in Flanders. Results:Among this difficulty, informations were gathered from of illness for this particular patient population. the 450 active volunteers are 20% male and proxies in an ‘after death approach’ study. The 80% female, age ranged from 38 to 72 years, query focussed on aspects of medical care, 27% is still professionally occupied. nursing care, and the efficacy of symptom Abstract number: 86 Motivational factors are: “do something control in three different places and settings of Presentation type: Oral meaningful with his spare time (70%)”, terminal care. A questionnaire was sent to 439 Poster number: “personal (positive and negative) history in proxies of deceased patients. Results: 59 proxies palliative care giving (15%)”, “opportunity for were included in the palliative unit group (68% Standards as a Focus for National Change personal growth (90%)”, “it’s the prolongation of addressees), 40 proxies (59%) of patients that and Improved Palliative Care of my professional activity (15%)”, “to died in a home care setting, and 125 (44%) overcome the taboos and prejudices around proxies of patients who died in hospital. The Frank Ferris, Center for Palliative Studies, San terminality and death (35%)”. Task description quality of care was judged in the categories ‘very Diego, U. STATES, Heather Balfour, revealed no substantial differences in how the good’, ‘sufficient’ and ‘very poor’. 88% of Saskatchewan Health, Regina, CANADA, Sharon 15 networks see the volunteers task. proxies judged medical care as ‘very good’ in the Baxter, Canadian Hospice Palliative Care Conclusions: There is not something like a palliative unit group (pu), 72% in the home care Association, Ottawa, CANADA, Greg Adams, “standard” to be suitable as a volunteer in group (hc) and 58% in the hospital ward group Canadian Hospice Palliative Care Association, palliative home care. Motivation on the one (hw). Positive evaluations of nursing care were Ottawa, CANADA hand showed the volunteers drive “to do

18 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

something meaningful with his spare time” and Chapman, Royal Liverpool University Hospital, assisted suicide in 1.2% and 0% (OR not on the other hand reveals very strongly the Liverpool, GREAT BRITAIN, Maureen Gambles, possible), life-ending acts without patient’s benefit in “personal growth” that he hopes to Royal Liverpool University Hospital, Liverpool, explicit request in 3.4% and 1.8% (OR ns), experience. At last, the task demands as a GREAT BRITAIN, Barbara Jack, Royal Liverpool alleviation of pain and other symptoms with a volunteer in palliative home care are almost University Hospital, Liverpool, GREAT BRITAIN potentially life-shortening effect (APS) in 53% similar in the 15 networks. and 23% (OR 3.8; CI 3.1–4.6), and non- One of the challenges facing palliative care is to treatment decisions (NTD) in 16% and 25% of transfer best practice of care for the dying from the cases (OR 0.6; CI 0.5–0.8). Conclusions: Abstract number: 87B a hospice setting to other care settings, and to Considering the higher frequency of APS, dying Presentation type: Oral non-cancer patients. One tool for achieving this among oncology patients is more often related Poster number: is the Liverpool Integrated Care Pathway for the to (potentially lethal) drug administration than

Dying Patient (LCP). This is a multi-professional among non-oncology patients. We found no APRIL 8 FRIDAY Masked and unmasked End of Life Care document that incorporates evidence-based evidence of a difference in probability of drug practice and appropriate guidelines related to administration with explicit intention of Jacek Luczak, Palliative Medicine Chair and care of the dying. The LCP has been developed hastening death. NTD is practised more often Department of Karol Marcinkowski University for the care of the dying cancer patient, but among non-cancer patients. These findings of Medical Sciences in Palliative Medicine Chair with modifications can be used in non-cancer show that the frequency and kind of ELD is and Department of Karol Marcinkowski patient populations. Aim Patients on the strongly related to the nature of the disease and University of Medical Sciences in Poznan Intensive Care Unit (ICU) have a high mortality argue for in-depth research on ELDs POLAND, M. Kluziak, Hospice Pallium, Poznan, rate and many patients with advanced illnesses differentiating between diseases and illness- POLAND spend some time ICU during their final hospital trajectories. admission. We carried out an action research Object of the study was to evaluate the project with the aim of producing a revised LCP, differences between masked (M) and unmasked designed specifically for use on ICU. Method Abstract number: 90 (UM) end of life care (EoLC) using the opinion and Results: Two focus group interviews were Presentation type: Oral of hospice caregivers carried out in order to gain an insight of how Poster number: Methods. An open questions questionnaire staff from a busy, adult ICU felt dying patients addressed to hospice caregivers, including age, were cared for, the relevance of the LCP in its Did you say aggressive or palliative end-of- sex, occupation, time of working in hospice, current format and suggestions for life care? religious denomination and questions dealing modification. A thematic analysis of findings with their description of M and UM EoLC, was undertaken. Key findings included the Diane Major, Public Health Services and caregivers’ experiences in caring for the dying, opinion that care of the dying could be Systems, Ste-Foy, CANADA, Caroline Bedard, descriptions of differences, their preparation for improved, particularly around diagnosing Institut National de Sante Publique du Quebec, providing care for the dying, their proposals to dying. There was strong support for LCP use in Ste-Foy, CANADA, Linda Cote-Brisson, Institut improve the EoLC an amended form. A working group, made up National de Sante Publique du Quebec, Ste-Foy, Results. 80 from 98 hospice caregivers of members of the ICU and hospital palliative CANADA, Marie Rochette, Institut National de participants of palliative care courses answered care teams, used these findings to amend the Sante Publique du Quebec, Ste-Foy, CANADA, the questionnaires: 9 men (21–74), 71 women LCP. After further consultation, the new LCP LOUIS (5th AUTHOR) JACQUES (6th AUTHOR) (18–75), mean age 42, 3; occupation: 6 doctors was launched on ICU with an accompanying ROY (5th AUTHOR) BRISSON (6th AUTHOR), (in hospice >1 year 6), 30 nurses (>1y – 14, <1y teaching programme run by the palliative care INSTITUT NATIONAL DE SANTE PUBLIQUE DU 6, candidates 10), 44 non-medical volunteers team. Completed LCPs were analysed after the QUEBEC, STE-FOY, CANADA (35 >1y, 6<1 year, 3 candidates including 1 project and compared with a base review of priest), all Roman Catholics documentation carried out previously. Introduction: This study aimed to assess Understanding the difference UM v M EoLC. Conclusion: This demonstrates how palliative markers of aggressive care in the last month of UNMASKED EoLC: if both patient and families care can cross the borders into intensive care, life among adults dying from chronic diseases are prepared to dying of the pts: truly informed and provides a model for successful integration requiring palliative care in Quebec, Canada. about illness and prognosis – 75 % (83% of into other clinical areas. Methods: Data for all adults who died in doctors, 93% of nurses, 65% volunteers), 1997–2001 were obtained from the Quebec sharing feelings with beloved – 65% and carers mortality database. Using the ICD 75%, closing unfinished business 60%, Abstract number: 89 classifications, chronic diseases requiring supported spiritually %, receiving spiritual Presentation type: Oral palliative care were determined by consensus of support from religious practices/prayer – 45%. Poster number: experts. Data for all hospitalizations in acute MASKED EoLC patients and families are not care hospitals and all medical interventions prepared for dying/death of pts -75%: diagnosis/ Medical end-of-life decisions in provided during the 2 years before death were information about very serious deterioration of oncology and non-oncology patients obtained from the provincial databases pts condition/prognosis not told, no awareness in Flanders, Belgium. maintained by the comprehensive public of death (83% of doctors, 93% of nurses, 60% health insurance system. Markers of aggressive volunteers), isolation 40%, unconscious 35%: Lieve Van den Block, End-of-Life Care Research care in the last month of life included some including severe dementia and sedation! Group, Brussel, BELGIUM, Johan Bilsen, Vrije interventions (intravenous chemotherapy, Most of the responders who give examples of M Universiteit Brussel, Brussel, BELGIUM, Jan L mechanical ventilation, reanimation, surgery, and UM EoLC also shared their experiences of Bernheim, Vrije Universiteit Brussel, Brussel, admission in intensive care units) and acute EoLC of beloved person or patients who died in BELGIUM, Deliens Luc, Vrije Universiteit care hospital use (>=2 admissions and >14 days hospitals – usually not receiving good EoLC. Brussel – VU University Medical Centre The of hospitalisation). Results: Among the 264,389 The responders stressed the needs of their better Netherlands, Brussel, BELGIUM deaths, 68.2% (180,436) were classified as preparation to EoLC and the role of hospice requiring palliative care. Cancers accounted for care for improving EoLC, especially home care Objective: Robust incidence studies worldwide 45.8% of these deaths but the majority (54.2%) as a better place than hospital for dying (70%). have reported high frequencies of end-of-life were attributable to other chronic diseases. Conclusion 1. Lack of awareness of impending decisions with a possible or certain life-ending Aggressiveness of care in the last month of life dying, lack of preparation for dying is perceived effect (ELDs) among cancer patients, but no in- decreased with age and varied with cause of as the main factor of masked EoLC depth comparative analysis between oncology death. Percent with one or more marker of 2. Communication skills, practical experiences and non-oncology patients has been made. In aggressive interventions was 26.0% overall and gained from team work in hospice are this study the frequencies of ELDs among ranged from 5.8% for mental diseases to 45.6% important factors to improve EoLC. It is a need oncology and non-oncology patients are for chromosomal/congenital malformations. for continuous training/education. compared. Method: We selected a random Percent spending >14 days in acute care 3. Hospice/PC should be available in all settings representative sample of death certificates of hospitals was 28.2% overall and ranged from where the pts are dying. 2001 (n=2950) in Flanders, Belgium. 10.7% of patients with mental diseases to 40.0% Anonymous questionnaires concerning ELDs of those with blood diseases. Conclusion: Age were mailed to the physicians who signed the and cause of death greatly influence end-of-life Abstract number: 88 death certificates. In this study we analyze all care. Better predictive models for the time of Presentation type: Oral non-sudden deaths involved. Logistic regression death and increased access to palliative care Poster number: analysis was used to calculate corrected odds- may decrease aggressiveness of end-of-life care ratios (95% CI). Results: Ninety-five percent of while responding to the needs of the dying and End of life care for all – Palliative Care in the cancer patients died non-suddenly versus their families. the Intensive Care Unit 70% of the non-cancer patients. For these non- sudden cancer and non-cancer deaths John Ellershaw, Department of Palliative respectively, an ELD was made in 74% and 50% Medicine, Liverpool, GREAT BRITAIN, Laura (OR 2.9; CI 2.3–3.5), euthanasia and physician-

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 19 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 91 of crying experiences were described by the Abstract number: 94 Presentation type: Oral patients: 1) Strong and hysterical/uncontrolled Presentation type: Oral Poster number: crying that was impossible to stop and started Poster number: e.g. after receiving of bad news. The situation Which patients die at home in Flanders, was overwhelming and the only was to express Effects of an Advanced Illness Belgium? Analysis of the determinants their feelings right then was by crying 2) Quiet Coordinated Care Program on Patients of dying at home, in hospital or in a sad and melancholic crying, with tears and Surrogates nursing home. streaming slowly down their cheeks. This type of crying was common when crying together Ronald Toseland, Institute of Gerontology, Joachim Cohen, End-of-Life Care Research with a relative. They showed their feelings School of Social Welfare, Albany, U. STATES, Group, Brussels, BELGIUM, Johan Bilsen, Vrije without hiding them from their relatives and in Daniel Tobin, Stratton VA Hospital, Life Universiteit Brussel, Brussels, BELGIUM, Peter these situations they experienced a feeling of Institute, Albany, U. STATES, Joseph Engelhardt, Hooft, Ministry of Flanders, Brussels, BELGIUM, sharing a difficult situation. The intensity was Stratton VA Hospital, Life Institute, Albany, U. Gerrit van der Wal, VU University Medical different in these two types of crying. Crying STATES, Kimberly McClive, University at Center, Amsterdam, NETHERLANDS, Luc was related to close relationships and the future. Albany, State University of New York, Albany, U. Deliens, Vrije Universiteit Brussel, Brussels, It broke through when patients felt STATES, Tamara Smith, University at Albany, BELGIUM disappointed, powerless and without the State University of New York, Albany, U. STATES possibility to influence the progression of the Objective: The knowledge of determinants for disease. Crying also had some positive effects, This randomized study examined the place of death is important for policy aimed at for example relationships became stronger, effectiveness of a structured intervention, the quality end of life care. We investigated the during the process of crying coping strategies Advanced Illness Care Coordination Program influence of clinical, socio-demographic, were born and crying created relaxation. By (AICCP) designed to improve coping with contextual and healthcare-system factors on the crying, dark thoughts were brought to an end advanced illness and end-of-life care planning, place of death. Method: We included all 55,759 and allowed for new energy. However, for some including patient involvement in shared deaths of 2001 in Flanders, Belgium. We informants, crying was the worst way of coping decision-making and communication between gathered our data via the officially registered and they described crying as unnecessary and as patients, families, and health care professionals. death certificates and anonymously linked a loss of energy. 253 patients with advanced illness and their them with healthcare statistics. A multivariate surrogates were randomly assigned to the multinomial logistic regression was used to AICCP condition or to a comparison group examine the associated factors (home, hospital Abstract number: 93 receiving usual care (UC). Patients and their and nursing home as dependent categories). Presentation type: Oral surrogates were assessed at study enrollment Results: Of all deaths in Flanders, 53.7% took Poster number: and three months post-enrollment on measures place in a hospital, 24.3% at home and 19.8% in of patient and surrogate satisfaction with health a nursing home. The place of death was found Advance Directives – What do Health Care care and provider communication. Results to be significantly associated with the patient’s Workers in Oncology feel about them? showed that AICCP significantly increased sex, age, educational level, living environment, patient satisfaction with health care and cause of death, and residence. The probability Caroline Usborne, Wirral, GREAT BRITAIN provider communication, while surrogates of of home deaths strongly varied per region. patients in the AICCP reported fewer problems Dying at home (compared to dying in a Background: In Great Britain there is increasing with emotional and spiritual support from hospital) was less likely among people suffering interest around the issues of Advance Directives providers. AICCP participants were significantly from non-malignant chronic diseases (ORs (A.D.s) and Living Wills, as a possible way of more likely than UC to have filed at least one from 0.86 to 0.27), lower educated people (OR: ascertaining the wishes of patients regarding advance directive (AD), and displayed more 0.72, 95% CI: 0.65–0.80), people living single medical treatment, should they be rendered continuous advance planning as reflected by (OR: 0.77, 95% CI: 0.73–0.81) and elder patients mentally incompetent. Currently they are used significantly greater numbers of documented living in institutes (OR: 0.16, 95% CI: infrequently in Great Britain compared to the AD and DNR/DNI orders. AICCP represents a 0.14–0.18). Conclusions: Important clinical, USA. Aim: To look at the attitudes towards, and means to help physicians comprehensively socio-demographic and contextual knowledge of A.D.s held by health care workers meet the extensive needs of seriously ill patients determinants for place of death were found; (H.C.W.s) at a Regional Cancer Centre. Method: and their surrogates in medical, psychological, healthcare system factors were less important. A 13-item, semi-structured questionnaire spiritual and practical domains of care. Although dying at home is wished by many, addressing attitudes, experience, and most people in Flanders, Belgium in 2001 died understanding of A.D.s (as defined by the in institutions, which places responsibility on British Medical Association) was distributed to Abstract number: 95 hospitals and nursing homes to ensure a quality the H.C.W.s at a Regional Cancer Centre. Presentation type: Oral end-of-life care for many. Characteristics of Results: Completed questionnaires were Poster number: patients not likely to die at home could be received from 79.5% (97) of H.C.W.s. The identified, which is important for policy responses were then divided into four groups; Palliative care in patients with head and interventions to support home death. doctors, qualified nurses, auxiliary nurses and neck cancer (SCCHN) other professions allied to medicine (P.A.M.s). Although the majority of doctors (69%), Claudia Bausewein, Klinikum der Universität Abstract number: 92 qualified nurses (77%) and P.A.M.s (55%) had München – Großhadern, München Annette Presentation type: Oral heard of the term, correct understanding of the Walz, HNO-Klinik Universitätsklinikum Poster number: term was very poor. Only 19% of qualified Schleswig-Holstein, Lübeck, GERMANY, Thure nurses had had any discussion with patients Kuprella Köln, GERMANY, Barbara Wollenberg, The perceived meaning of crying among about A.D.s and only 10% had cared for a HNO-Klinik Universitäsklinikum Schleswig- cancer patients at the end of life patient with one. No other H.C.W. group had Holstein GERMANY had any experience of A.D.s. Information Kerstin Rydé, Faculty of Health Sciences, leaflets, both for patients and H.C.W.s, were felt Objective: Despite radical primary therapy the Linköpings University, Norrköping, SWEDEN, would be of benefit by the majority, although survival rate of patients with advanced stages of Maria Friedrichsen, Department of Welfare and some felt that this would not be helpful, SCCHN has remained unchanged over the past Care, Norrköping, SWEDEN, Peter Strang, particularly for patients. Conclusion: Although 50 years. Tumour recurrence in the upper Karolinska Institutet, Stockholm, SWEDEN a significant proportion, 64% (62), of H.C.W.s aerodigestive tract causes multiple symptoms had heard the term A. D., it was confused with a and psychosocial problems during the last Introduction: Crying is a typical human Living Will rather than a true A.D. Qualified months of their life. Method: Retrospective expression for emotions and has physiolgical as nurses appeared to be the only group that had chart review of patients who have been seen by well as behavioural functions. Still, there is encountered A.D.s in clinical practise. Beliefs the hospital support team and on the palliative sparse literature about adult crying among surrounding the legal position of A.D.s were care unit in the University Hospital Munich patients in a palliative care context. The aim of varied. However, the fact that they can be from 1st October 2002 to 30th September 2003. this study was to explore the perceived meaning legally binding (by case law) in Britain appears 41 patients (8 women, average age 62 years) of patients crying at the end of life. Methods: A to be poorly understood. However, the majority with different locations of head and neck purposeful sampling aiming at 15–20 were enthusiastic about further education for cancers (7 oropharynx, 6 floor of the informants was undertaken. Tape-recorded staff and patients. mouth/tongue, 9 hypopharynx, 5 larynx, 6 semistructured interviews were performed and sinus, 8 other). Local recurrence occurred in 26 analysed using a hemeneutic approach. Up patients (63%). Results: Best possible treatment until this date, the sample consisted of ten plans were developed for each patient between cancer patients at two palliative-hospital based physicians from ENT and palliative medicine. home care units in the county of Östergötland General symptoms were pain (66%), dyspnoea in Sweden. Preliminary results: Different types (27%), dry mouth (24%), anxiety (19%), nausea

20 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

(19%) and constipation (17%). Specific Abstract number: 97 comparison: home care versus other models of symptoms were exulcerating tumours (37%), Presentation type: Oral care 4) localization in western countries. 6 RCTs tumour bleeding (26%), dysphagia (22%) and Poster number: and 8 SRs were selected. We decided to overview malodour (20%). 22 patients (54%) had a the 8 good quality and up to date SRs, tracheostomy with consecutive communication Respite care in the hospice setting: what evaluating 67 studies and 18,700 subjects all problems and 22 patients had feeding do the carers think? together. The studies showed methodological problems. 33 patients were seen by the hospital quality ranging from RCTs to case reports. The support team, 7 only for a single consultation Julie Skilbeck, Carer, School of Nursing and outcomes evaluated in SRs were classified into 4 and 11 during several hospital stays. 8 patients Midwifery, Sheffield, GREAT BRITAIN, Sheila areas: 1) patient’s 2) patient’s & caregiver’s 3) were cared for on the palliative care unit. The Payne, University of Sheffield, Sheffield, GREAT caregiver’s 4) health care professional’s. We help of a social worker was necessary in 18 BRITAIN, Mike Nolan, University of Sheffield, summarized the results as a narrative synthesis.

(44%) patients to clarify further care and Sheffield, GREAT BRITAIN, Christine Ingleton, Palliative care at home versus standard care APRIL 8 FRIDAY support patients and relatives in legal questions. University of Sheffield, Sheffield, GREAT showed: improved or similar quality of life Only 7 patients had an advance directive. BRITAIN, Andrea Hanson, St Luke’s Hospice, (QoL), pain and symptom control, improved Conclusion: Problems of patients with head Sheffield, GREAT BRITAIN satisfaction with care and quality of death, less and neck cancers are complex. Physical time spent in hospital. Palliative care at home problems and psychosocial issues play a major Background: A common reason for unplanned can support caregivers, is cost effective, costs role. Patients profit from a qualified admissions near the end of life is carers’ less then other models of end of life care. The interdisciplinary and multiprofessional inability to provide continuing care. One effective care is characterized by approach. Advance directives are recommended strategy to overcome these challenges has been multidisciplinary team visiting patients at for these patients as they suffer regularly from to offer inpatient respite admissions. Little is home. We indicate satisfaction with care, complications, e.g. tumour bleeding. known about respite services, particularly how patient’s preference and opinion, and time respite is experienced by caregivers or to what spent in hospital as the best outcome measures extent inpatient respite services address the for a palliative care service at home. QoL and Abstract number: 96 carers’ needs. Aim: This study examined carers’ symptom control must be monitored but not Presentation type: Oral experiences of looking after a relative with a considered as markers of effectiveness. Poster number: life-limiting illness and their expectations of a hospice inpatient respite service, UK. Methods: Continuity in supportive and A prospective observational study, using Abstract number: 99 palliative care: a study across 3 qualitative and quantitative methods. Presentation type: Oral London Cancer Networks Interviews were conducted with carers before Poster number: and after respite admission. The Relative Stress Louise Jones, Mental Health Science, London, Scale inventory was also administered. Factors affecting the place where cancer GREAT BRITAIN, Michael King, Royal Free and Interview data were audio-taped, transcribed, patients die: a systematic review University College Medical School, London, and analysed using constant comparison. GREAT BRITAIN, Irwin Nazareth, Royal Free and Categorical data was entered on to SPSS and Barbara Gomes, Palliative Care and Policy, University College Medical School, London, descriptive and comparative statistics London, GREAT BRITAIN, Irene J Higginson, GREAT BRITAIN, Alison Richardson, Kings undertaken. Findings: Twenty-six carers were The Cicely Saunders Foundation/King’s College College, London, GREAT BRITAIN, Adrian interviewed. Two-thirds were aged 65 and London, London, GREAT BRITAIN Tookman, Royal Free Hospital NHS Trust, under. Sixteen were spouse carers (2 men), 8 London, GREAT BRITAIN daughters. The two main patient diagnoses were Introduction: Place of death has been regarded cancer and neurological conditions. Length of internationally as an outcome measure of the Background: Delivering continuous supportive caring ranged from 1–20 years; median 7. Half quality and performance of palliative care. This care in cancer crosses primary and secondary of the carers found looking after their relative comes from evidence that most patients with care and is encouraged by NICE Guidance for was having a moderate impact on their life; for advanced illness wish to die at home but most Palliative and Supportive Care (March 2004). 9 the impact was substantial. Twenty-three die in acute hospitals. Aims: (1) To identify the Research evidence is needed on how this might carers felt that they had benefited from their factors which influence place of death for be achieved. Aims: A study funded by the NHS relative’s respite stay. All carers found the respite cancer patients, and (2) to develop an Service Delivery Organisation of continuity of service valuable; the good quality of nursing explanatory model of the variations of place of cancer care, from diagnosis to palliation. care was a particular issue. A particular model of death. Method: Systematic literature review – Method: A cross sectional qualitative study respite care was in place, ‘to give the carer a search on MEDLINE (1966–2004), psycINFO recruiting, from primary care, 30 patients with break’, which may not be best suited for those (1972–2004), CINAHL (1982–2004) and ASSIA breast, lung or colo-rectal cancer at 5 transitions patients in the last few months of life. (1987–2004) and handsearching relevant in care: diagnosis, end first treatment, Conclusion: This study highlighted the impact journals. Studies were included if they tested remission, relapse, palliation. Nominated close on carers looking after a relative with a life- the association of variable(s) with the place of persons and primary and secondary health care threatening illness. It suggests that hospice death among patients where more than 50% professionals also interviewed. Results led to units may need to reconsider their approach to had cancer. The quality of studies was assessed development of instruments for a quantitative respite care. For carers the quality of specialist using a standardized scale. Data was longitudinal cohort study recruiting 250 palliative care is an issue when utilizing respite qualitatively analysed. Results: The search patients from secondary care in 3 London services. identified 240 papers of which 61 were cancer networks, followed for 1 year at home. included. Various comparisons were made – Results: Qualitative analysis (NuDisT and case home vs. hospital, institutional vs. home, study methods) and preliminary analysis of Abstract number: 98 nursing home vs. home, making it difficult to quantitative data revealed 5 key factors affecting Presentation type: Oral combine studies. Twenty-seven studies were continuity: 1) individual patient factors: Poster number: multivariate. Elements of evidence were reactions to diagnosis, acceptance of diagnosis contradictory with multivariate and univariate and treatment, relationships with close persons Palliative care at home: a systematic studies sometimes showing opposite effects. affecting patients’ and families’ engagement literature review Three groups of factors were identified. (1) with services. 2) family factors: relationships Illness-related factors – non-solid cancer and a between family members and information VITO CURIALE, Gerontologia e scienze motorie, short dying trajectory were associated with sharing. 3) communication between patients GENOVA, ITALY, FABRIZIO FAGGIANO, hospital death; (2) Demographic and personal and services, and primary and secondary care; UNIVERSITA’ DI TORINO, TORINO, ITALY factors – people with low socio-economic first contact can set the scene for relationship to resources and from an ethnic minority were less follow 4) decision-making: how much patients Palliative care is available at the patient’s home likely to die at home. Patients’ home preference and their close contacts desire, and are included in developed countries but the effectiveness of was one of the factors with greater weight on in, decision-making with professionals 5) such services is not supported by clear evidence. determining a home death (e.g., O.R.s ranged interest and motivation of staff: services differ This study is a systematic review on the from 2.19 to 8.36); (3) Environmental factors – in structure and staff personalities, both impact effectiveness of palliative care at home. We intensity of home care and social support were on patient engagement and continuation in searched the databases (1994–2004): Medline, associated with home death. Conclusions: Our care. Conclusions: Patient centred factors are as EMBASE, Cochrane Central Register of findings suggest that a complicated network of important as service delivery in ensuring Controlled Trials, Cochrane Library, Database of factors is affecting place of death. These should appropriate continuity and supportive care. Abstract of Reviews of Effects. The key words be considered in policy, clinical practice and This study provides evidence for development used were: home care, home care services, research. of a workable intervention to address continuity cancer, neoplasms, palliative care. The selection within existing services. criteria was: 1) systematic reviews (SRs) or randomized controlled trials (RCTs) 2) subjects: adult cancer patients in palliative treatment 3)

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 21 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 100 conducted semi-structured interviews with 23 effects of the recommendations. Developing a Presentation type: Oral people with MS and 17 carers in Southeast standard for palliative care is pioneer work Poster number: London, and 12 focus groups and 4 individual which we consider to be of major importance interviews with HCPs working in MS, for the organisation and development of Type and quality of care received by rehabilitation, or palliative care across Southeast palliative care in Norway. terminal cancer patients: an Italian England. These interactions were taped and mortality follow-back survey transcribed and a content analysis performed. Results: The main preoccupations of people Abstract number: 103 Massimo Costantini, Unit of Clinical with MS were their experiences of loss and Presentation type: Oral Epidemiology, Genova, ITALY, Beccaro Monica, change, relating to mobility, independence, and Poster number: National Cancer Institute, Genova, ITALY, Merlo personal relationships. A few people with MS Franco, National Cancer Institute, Genova, had specific concerns regarding pain, Patterns and Predictors of Palliative Care ITALY medication, non-specialist care, and end-of-life Service Utilization in Alberta issues. Informal carers were particularly Study objective: to describe type and quality of troubled by the quality of care, services and Konrad Fassbender, Palliative Care Research care received by Italian cancer patients during information received by people affected by MS. Initiative, Edmonton, Alberta, CANADA, Robin their last three months of life. Methods: this is a HCPs also identified issues relating to Fainsinger, University of Alberta, Edmonton, mortality follow-back survey of 2,000 cancer continuity of care and service provision. In CANADA, Carleen Brenneis, Capital Health, deaths, identified with a 2-stage probability addition, HCPs highlighted the unpredictability Edmonton, CANADA, Norah Keating, University sample, representative of all Italian adults of the disease process, specific physical and of Alberta, Edmonton, CANADA, Janet Fast, cancer deaths. In the 1st stage, 30 (15.2%) Local psychological problems, and end-of-life issues, University of Alberta, Edmonton, CANADA Health Districts (LHD) were randomly selected. specifically terminal care and decision-making. In the 2nd stage a fixed proportion of death Conclusion: People with progressive MS have In the mid 1990s, comprehensive and certificates were drawn from each LHD. The symptom control problems and needs relating integrated community-based models of main non-professional caregiver was identified to provision of care and obtaining services and palliative care services were introduced in using all available sources of information. After information. HCPs identify some of these Edmonton and Calgary (Alberta, Canada) and consent, a trained health professional issues, and also highlight needs in other areas, resulted in an increase in access to cancer interviewed the caregiver using a structured particularly towards the end of patients’ lives patients from 45% in 1993 to 81% in 2000. This interview. It covered most of the with MS. Any service for people with means that roughly 500 out of the 2,600 multidimensional problems of the patient and progressive MS should address this range of patients that die from cancer each year do not of the family, and type and quality of care issues. Specialist palliative care can offer receive palliative care services. We therefore received care. Results: All the LHDs participated particular expertise in doing so, in collaboration explore potential determinants of access to to the study. The main caregiver, identified for with neurology and neurorehabilitation. palliative care services. A review of the literature 1,900 patients (95.0%), was the child (41.7%), revealed the following potential barriers to the spouse (36.4%), another relative (17.4%), or accessing palliative care services: geographic, a friend (1.5%). For 57 patients (3.0%) without Abstract number: 102 financial, social, minorities, diagnoses, caregiver a health professional was identified. Presentation type: Oral caregiver support and temporal barriers. A 70% of the caregivers were female. Interviews Poster number: statistical analysis of comprehensive failed because the caregiver could not be administrative data revealed no significant located (8.5%); refused (20.1%); was deceased or Norwegian Standard for Palliative Care predictors of access. We conclude that better too ill (2.4%), or for other (2.1%). We obtained data and prospective studies are required to 1,271 valid interviews (63.5%). The median Dagny Faksvåg Haugen, Regional Centre for identify the potential existence of marginalized time between the patient’s death and the Palliative Care, Bergen, NORWAY, Per populations. interview was 234 days (range 103–374), and Engstrand, Østfold Hospital, Fredrikstad, most interviews were performed 4–8 months NORWAY, Ørnulf Paulsen, Telemark Hospital, (58.9%) after patient’s death. The compliance Skien, NORWAY, Marit S. Jordhøy, Nordland Abstract number: 104 was homogeneous among the four geographical Hospital, Bodø, NORWAY, Stein Kaasa, St. Olav’s Presentation type: Oral areas (65.4%–68.7%; p-value=0.733). A Hospital, Trondheim, NORWAY Poster number: significant trend (p-value<0.01) was observed between timing of contact with the caregiver Palliative care is performed throughout the The effectiveness of a nursing science and compliance. The compliance decreases health care system. At the same time, palliative investigation in daily nursing practice: from 74.6% for contacts 4–6 months after medicine is developing into a specific area of the Pain Education Program patient death to 56.6% for contacts 10–12 medicine, with a defined range of services. The months after patient death. Conclusion: The Norwegian Association for Palliative Medicine Tilly Baan, Pain Expertise Centre, Rotterdam, results of this survey can be interpreted as was asked by the Norwegian Medical NETHERLANDS, Dirk Stronks, Erasmus MC, representative of the experience of the Association to develop a Standard for Palliative Rotterdam, NETHERLANDS, Karin van der Rijt, population of cancer patients during their Care. The aims were to ensure an adequate Erasmus MC – Daniel den Hoed, Rotterdam, terminal phase of disease. organisation of the services and to define NETHERLANDS, Rianne de Wit, Erasmus MC, minimum requirements for the medical Rotterdam, NETHERLANDS contents and competence. The work was Abstract number: 101 completed in November 2003. The document Introduction: In the Netherlands, a Pain Presentation type: Oral has been reviewed within the Medical Education Program (PEP) was developed, a Poster number: Association and by external parties, and the tailored education program in which verbal revised version will hopefully be approved by instruction, a pain brochure and the use of a Do people with MS (Multiple Sclerosis) the Medical Association in the autumn of 2004. pain diary were combined to inform and have palliative care needs? The Standard for Palliative Care is based on the instruct cancer patients about pain and pain recommendations of the Norwegian Cancer management. The PEP was provided either in Polly Edmonds, Palliative Care Team, London, Plan (1997) and a national report on palliative the hospital or at home; this was done by GREAT BRITAIN, Bella Vivat, King’s College care (1999). The document defines basic specially trained hospital or district nurses. London, London, GREAT BRITAIN, Rachel palliative care, to be provided to all seriously ill Main purpose of implementing the PEP was to Burman, King’s College Hospital, London, and dying patients nationwide. The improve the quality of pain management. This GREAT BRITAIN, Eli Silber, King’s College organisation of palliative care services is study aimed to assess the overall effectiveness of Hospital, London, GREAT BRITAIN, Irene J described on all levels: 1. Regional palliative the PEP in terms of patients’ knowledge of pain Higginson, King’s College London, London, care centres in university hospitals 2. management and pain intensity. In addition, GREAT BRITAIN Multidisciplinary teams and palliative care units the effectiveness of the PEP as administered by in central hospitals 3. Palliative care units in nurses and the nurse specialist was compared. Background and aims: Anecdotal reports and nursing homes 4. Palliative care in ordinary Methods: The PEP was implemented in daily some surveys have identified that people with hospital wards, nursing homes, and home care. nursing practice of three hospitals. Nurses on progressive MS (multiple sclerosis) have unmet Detailed recommendations for clinical content, hospital wards and district nurses were trained needs, which palliative care might be able to organisation, staffing, and facilities are given for as pain counsellors to educate and instruct address. However, there is little detailed each organisational element. Cooperation and patients. Nurses educated patients individually information in this area. Our project therefore networking are thoroughly described. One about pain topics only when patients’ pain was sought to identify which MS-related issues were important element is a network of nurses in assessed as insufficient. Results of 357 patients perceived as important by people with more hospitals and primary care. The document are presented. Overall results showed that advanced MS, their informal carers and health includes separate chapters on patients’ pain knowledge increased and pain care professionals (HCPs), and to compare their education/training, competence, and research. intensity decreased significantly. The perceptions. Method: Over 6 months we Quality indicators are proposed to monitor the percentage of patients with a pain intensity of 4

22 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

or more decreased significantly. Although some discussion, four 2-week long modules were Palliative Care, Tom Baker Cancer Centre, nurses had difficulties implementing the PEP offered on ‘Dignity & Narrative’, ‘Suffering & Calgary, CANADA, Maria Palacios Mackay, into practice, no difference in effectiveness was Self-awareness’, ‘Spirituality’ and ‘Hope’. Centre for Distance Learning in Palliative Care, found between nurses and the nurse specialist Methods: Post-course focus groups, open-ended Tom Baker Cancer Centre, Calgary, CANADA providing the PEP. Conclusion: The use of the surveys and content analyses of the online PEP has been effective for cancer patients in discussions. Results: Gender differences were Background: There is growing interest in chronic pain in daily nursing practice. observed on questions regarding psycho- providing online health-related education. spiritual aspects. Male residents rated exploring However, e- learning presents new challenges spirituality concerns lower than females (3.3 vs. for instructors and learners alike. This 7-week Abstract number: 105 5, on a 5-point Likert scale). Female residents long international course, delivered entirely Presentation type: Oral felt spirituality concerns were relevant and online, aims to equip palliative care educators

Poster number: appreciated the opportunity to discuss them. with the skills required to effectively facilitate APRIL 8 FRIDAY When asked about their undergraduate medical online group-based learning. Readings, Rural Palliative Care (PC) Education: training, residents stated that psycho-social and asynchronous online discussions and simulated Results of a Hybrid Course with Face-to- spiritual domains had not been explicitly scenarios are used. Online facilitating skills are Face and Online Learning covered in the curriculum. Several learners practiced through mini-courses. The results of pointed out that the medium (i.e. web-based the first international iteration of this course are Jose Luis Pereira, Division of Palliative instruction) had prompted them to reflect reviewed. Methods: Pre and post course surveys. Medicine, Calgary. Alberta, CANADA, Robert much deeper and share their thoughts in a Results: 15 PC educators from Canada, Wales, Wedel, Chinook Health Region, Lethbridge, more comprehensive manner then would have Argentina, South Africa and Portugal registered. CANADA, Maria Palacios Mackay, Centre for happened in a traditional face-to-face setting. 11 participants were active throughout the Distance Learning in Palliative Care, Tom Baker Conclusions: Asynchronous online small-group course. Learners found the course empowering Cancer Centre, Calgary, CANADA, Jaci Lyndon, discussions provide an effective medium to and the workload acceptable. The course gave Centre for Distance Learning in Palliative Care, introduce the psycho-social and spiritual them first-hand experience of the transitioning Tom Baker Cancer Centre, Calgary, CANADA, domains of care. In some ways it may prompt journey from face-to-face to online learning Alison Murray, University of Calgary, Calgary, more reflection than traditional face to face environments. Content analysis (using CANADA classroom-based courses. Effective facilitation is Transcript Analysis Tool) revealed the paramount. discussions to be reflective and enlightening Background: Providing palliative care distance and demonstrated that learners achieved good education using web-based technologies can be facilitations skills through the mini-courses. challenging. We delivered a compulsory Abstract number: 107 Conclusions: PC educators considering teaching palliative care course to a rural family medicine Presentation type: Oral online should acquire the skills required for program using a combination of instructional Poster number: effective online facilitation. A Web-based course strategies that included face-to-face instruction, such as this provides educators with the online instruction, and objective structured Objectives Structured Clinical Encounters necessary basic skills and increases access to clinical examinations (OSCEs). Methods: Pre- (OSCES) for Palliative Care education of training without having to travel. and post-course knowledge quizzes, surveys, medical students and residents: OSCEs and focus groups were used to assess Practicalities and Psychometrics. course effectiveness. Results: There was a Abstract number: 109 significant improvement in knowledge overall Terri Collin, Centre for Distance Learning in Presentation type: Oral when comparing pre and post-knowledge tests Palliative Care, Calgary, CANADA, Jose Pereira, Poster number: (t = 4.44, p<0.001); (Cronbach’s-alpha = 0.50). University of Calgary, Calgary, CANADA, Robert Residents’ overall attitudes related to caring for Wedel, University of Calgary, Calgary, CANADA, Palliative Care Research and Education in PC patients were influenced by participation in Alison Murray, University of Calgary, Calgary, the Developing World: Is it Possible? the course. E.g. On a scale from 1–5 (1=strongly CANADA, Lyle Galloway, University of Calgary, disagree and 5=strongly agree) the mean rating Calgary, CANADA Liliana De Lima, Director, Houston, U. STATES, scored by all residents regarding the importance Richard Harding, Kings College, London, of identifying and exploring spiritual concerns The traditional clinical examination has been GREAT BRITAIN, Jose Pereira, Centre for with TIP was 4.6. As well, residents rated they shown to have serious limitation in terms of its Distance Learning, Calgary, CANADA, Deborah felt more comfortable in caring for PC patients validity and reliability. The objective structured Norval, Centre for Palliative Learning, (mean= 4.5 on a 5-point Likert Scale) after the clinical examination (OSCE) provides improved Johannesburg, S. AFRICA course. Overall the course was well received. psychometrics and is becoming more popular Students generally preferred the face-to-face to assist in the evaluation of clinical Learning Objectives: At the end of this session, instruction, followed by online case discussions performance. Moreover, OSCEs are also useful participants will be able to learn: 1. Main and OSCEs. Conclusions: A course using as educational tools. In this course, OSCEs were challenges that health care and palliative care multiple instructional strategies and implemented as learning tools and assessment physicians face in developing countries in the technologies met the PC learning needs of rural methods in two of our Palliative Care (PC) provision of palliative care; 2. Current resources residents. Lessons learned are applicable to education programs. In one of them, the rural available for palliative care education and other disciplines and Web-based distance family medicine program, OSCEs consist of 4 research in developing countries; 3. Strategies learning programs. standardized clinical scenarios with trained that have been applied in developing countries actors. The cases elicit communication, clinical which have been effective addressing problems and ethical decision-making and advanced related to education and research; 4. The role Abstract number: 106 planning skills related to palliative care. Using that organizations may play in providing Presentation type: Oral case examples and data from our own PC technical expertise and resources for education Poster number: program, including video-material of OSCEs, and research to programs in developing this presentation will a) Define OSCEs; b) countries. Session Description: In this session Palliative Care Psychospiritual Learning Explore the psychometric properties of OSCEs; presenters will give an overview of current Online: What do the learners think? c) Provide a step-by-step approach to health care resources available for treatment, implementing OSCEs in the PC setting research and education. Programs and Murray Murray, Division of Palliative Medicine, including the pros and cons; d) Discuss individuals in poor countries are under the Calgary. Alberta, CANADA, Lyndon Jaci, Centre methods of rating and marking the OSCEs pressing need to develop research and for Distance Learning in Palliative Care, Tom providing examples of score sheets; and e) educational strategies which will enable them Baker Cancer Centre, Calgary, CANADA, Maria Summarize the response of learners to this to access funding and technical support. Palacios Mackay, Centre for Distance Learning method of instruction and evaluation. Samples of strategies and programs which have in Palliative Care, Tom Baker Cancer Centre, proven to be succesfull in overcoming barriers Calgary, CANADA, Jose Pereira, Centre for will be presented. Emphasis will be given to Distance Learning in Palliative Care, Tom Baker Abstract number: 108 solutions that have worked in the past and their Cancer Centre, Calgary, CANADA Presentation type: Oral applicability to programs that face similar Poster number: problems. Barriers such as low socioeconomic Background: The ability of e-learning to support conditions which affect the efficiency and education related to the psycho-social-spiritual Becoming an ‘Online Guide’: Results of an effectiveness of the programs and their ability domains of care is often doubted. Recognizing International Course for Palliative Care to conduct the needed education and research, the importance of these domains we included (PC) Educators. cultural issues which may affect educational them as part of an online component of a and research programs will be discussed. compulsory palliative care (PC) course for rural Jose Luis Pereira, Division of Palliative family medicine residents/registrars. Using Medicine, Calgary. Alberta, CANADA, Jaci asynchronous, reflective small-group Lyndon, Centre for Distance Learning in

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 23 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 110 Presentation type: Oral Poster number:

A Palliative Medicine Curriculum for Medical Students in Japan

Tsuneo Kato, Working Party for a Palliative Medicine Curriculum, Okayama, JAPAN

Tsuneo KATO, ‘Working Party for a Palliative Medicine Curriculum’ (Introduction) In Japan, there have been few systematic education programs for medical students in palliative medicine. We organized a working party and developed an appropriate curriculum for undergraduate medical education. Method: The working party comprised a GP, an oncologist, a chaplain, a palliative care specialist, a geriatrician, and 2 specialists in medical education, all of whom were committed to palliative care. From 2001 to 2003, we conducted a series of four 2-day workshops. Result: Our aim was that this curriculum would allow students to: 1) consider not only palliative medicine but also human life as the basis of clinical medicine, 2) focus mainly on pain management in the area of symptom control, 3) learn team approaches, 4) respect each patient, family, and care team as individual persons or groups, 5) learn inter-professional, inter- medical disciplinary, inter-facility, and inter- community cooperation, 6) learn care continuity, 7) be acquainted with service provision systems, 8) become familiar with particular domiciliary care, 9) learn about group dynamism within a family and a care team, and 10) understand the importance of alternative and complementary medicine for most patients. We identified 13 educational categories, which include: 1) the concept of palliative medicine, 2) psycho-social issues, 3) ethical issues, 4) communication, 5) cooperation with other disciplines, 6) caring for families, 7) spirituality, 8) home care, and 9) caring for support-team members. Discussion: Although this is still a list of learning objectives, we are in the process of developing a total curriculum to include strategies, resources, and assessments according to the user’s locality. (Note) Other members of the Working Party are; Takeshi SAITO, Shinya SAITO, Hidetoshi SATO, Kazuko MATOBA, Nobutaro BAN, Motohumi YOSHIDA

24 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 111 Revisions, finalizing, translations Standings. In investigation results. Decisions are then made at Presentation type: Poster the fall 2004, the pain item pool is being tested a multi-professional admission meeting, taking Poster number: P1 at several palliative care sites in Norway. The PF into consideration the information provided pool is currently in step 2 above, while pilot and in particular the prognostic estimate in The Palliative Care Consultation: a testing of the CF pool is about to start. those patients referred for continuing care. The quantitative study Conclusion. The PAT-C will be developed in a accuracy of the prognostic estimate is critical to palliative care setting. However, the making the correct decision and prevents the David J. Feuer, Palliative Care Team, London, methodology should also make it applicable for potentially traumatic subsequent discharge of GREAT BRITAIN, Patricia Sealy, Barts and The other patient populations. Testing of the CF patients and unnecessary prolonged bed London, London, GREAT BRITAIN pool will encompass palliative and general occupancy. Aims: We wanted to evaluate the medical patients, to ensure a higher prevalence accuracy and validity of the patients’ prognosis

Objectives: To review the palliative care of cognitive dysfunction and sufficient as given by the referrers and to be able to APRIL 8 FRIDAY consultation and quantify the types of sensitivity for the tool. Electronic gathered data consider the value of supporting information recommendations given and their uptake, and will facilitate tailored symptom assessment to (i.e. investigation results, clinical information to try to identify some of the possible reasons the benefit of patients, clinicians and etc) supplied. We wanted to assess the difficulty for the non-uptake of that advice. Setting: A researchers in acquiring sufficient information for decision- hospital palliative care team in a large teaching making and whether factors such as diagnosis hospital and cancer centre. Design: A affect the accuracy of the prognosis. Method: A prospective study of the consultations Abstract number: 113 two-month pilot survey was undertaken performed by a Specialist Registrar and a Presentation type: Poster followed by a four-month survey. Data was Clinical Nurse Specialist over a 3 month period. Poster number: P3 collected from EBS referral forms and letters Results: A total of 72 new patient episodes were onto a recording sheet. This data was collected studied, 33 doctor assessments and 39 nurse Changes in chief complaint of patients from the multi-disciplinary admission meeting assessments. During these, 323 by concerning in palliative care by one observer (for continuity, a second recommendations were given at an average of team ‘Assessment of a consultation observer was involved when the first had to be 4.5 per patient episode, the most common type palliative care team in a absent). The date of death was then recorded for being an adjustment in the patients drug university hospital’ the in-patients and the progress of those not therapy. Out of these recommendations, 46 accepted was traced. Results & Conclusions: (14.2%) were not taken up – 32 (18.6%) of nurse Toshihiko Nakatani, Palliative Care Centre, Early results show a disparity in the estimated given recommendations and 14 (9.3%) of Izumo, JAPAN, Misuzu Nitta, Shimane prognosis and the date of death; in most cases doctor given recommendations. The most University Hospital, Izumo, JAPAN, Ruiko Hatto, the estimate was too long. Insufficient common reason for non-uptake of advice was a Shimane University Hospital, Izumo, JAPAN, Information also led to delays and difficulties in senior member (i.e. consultant or registrar) of Nobue Uchida, Shimane University Hospital, reaching decisions. It could therefore be the patients own team overruling the advice Izumo, JAPAN, Yoji Saito, Shimane University proposed that standards be set in terms of the given. There were also occasions of nurse given Hospital, Izumo, JAPAN information required at referral (i.e. specialist advice where the rationale for that advice reports, investigation results or validated appeared not to be understood. Discussion: In Introduction: Palliative care centre has been prognostic indicators). general, the advice given by the hospital established in our university hospital on Oct. palliative care team appears to be effected by the 2003. This centre has a consultation type referring team. There were demonstrated palliative care team which is consisted of several Abstract number: 115 differences between the types of advice and specialists. As about a year have passed since Presentation type: Poster uptake of advice given by clinical nurse establishment, it should be required to assess Poster number: P5 specialist and doctor and this may reflect the the activity of palliative care team, focusing on ongoing development of both roles within the the treatments for the chief complaint in which The problems experienced by patients health service. was mostly requested to our palliative care team. with cancer, and their needs for Methods: The objects were patients who were palliative care consulted to our palliative care centre during Abstract number: 112 ten months from Oct. 2003. The number of Bart H.P. Osse, Center of quality of care Presentation type: Poster patients was 63. As the most complaint which research, WOK, Nijmegen, NETHERLANDS, Poster number: P2 was need to treat was pain (60 patients), we Myrra, J.F.J. Vernooij-Dassen, Center of quality checked changes of pain score measured by of care research, WOK, Nijmegen, The approach to systematic symptom Wong-Baker’s Face scale and scores in degree of NETHERLANDS, Egbert Schade, Dept. of assessment in palliative care – PAT-C pain relief at the point of consultation and post General Practice, Academical Medical Centre our care. We investigated about the medical University of Amsterdam, Amsterdam, Marianne Hjermstad, Institute for Behavioural treatments to care for patients by palliative care NETHERLANDS, Richard P.T.M. Grol, Center of Sciences in Medicine, Oslo, NORWAY, Jon team. Results: Pain score was significantly quality of care research, WOK, Nijmegen, Håvard Loge, University of Oslo, Oslo, improved by concerning of palliative care team NETHERLANDS NORWAY, Stein Kaasa, Norwegian University of after consulting. Wong-Baker’s Face scale Technology and Science, Trondheim, NORWAY decreased from 4.0 to 1.7 (mean) after Goal of work: To investigate the problems that treatments. Treatments which our team have patients experience, and their met and unmet Background. Palliative care patients have high mainly cared for patients were induction of needs for professional help. This information is levels of various subjective symptoms, but there opioids, opioids rotation, increasing dose of necessary to tailor palliative care to the needs of is low consistency on how to assess these opioids, induction of radiotherapy. patients. Patients and Methods: Patients (N=94) systematically. Subjective symptoms are the Implications: The effectiveness in pain control with disseminated cancer completed a validated main targets for clinical interventions and was determined. It is important for us to checklist with 90 potential problems and needs palliative care research, thus a valid, educate the usage of opioids for physicians in for care (PNPC questionnaire). Main results: On international tool for symptom assessment will charge. We should improve the ability to take average, patients experienced 37 problems yield evidence-based knowledge for clinical use care of patients beyond the border which exists (range 0–68), and required more professional and research. The objective of the PAT-C project among the specialists especially between a attention for 8 problems (range 0–71), The 5 is to develop a comprehensive symptom physician in charge and palliative care team. most prevalent problems were: fatigue, heavy assessment tool by the use of item response housework, coping with the unpredictability of theory (IRT) and bedside computer adaptive the future, fear for metastases, and frustrations technology (CAT). Methods. IRT models enable Abstract number: 114 because I can do less than before. The 5 issues more precise information about constructs by Presentation type: Poster most in need for extra attention were: fewer items than traditional psychometric Poster number: P4 informational needs, coping with the models. The CAT technology automatically unpredictability of the future, fear for selects questions that provide the maximum The Role of Prognosis in the Process of metastases, fear for physical suffering, and information from an item pool, based on the Admission Decision Making difficulties remembering what was told (during patient’s previous answers. Pain, cognitive consultations). Younger patients experienced function (CF) and physical function (PF) will be Kevan Ritchie, Palliative Medicine, London, more social, psychological and financial the first symptom areas of the tool, derived GREAT BRITAIN, Teresa Garcia-Baquero Merino, problems. Some patients (10%) expressed a through a stepwise process: 1. Literature search, St. Joseph’s Hospice, London, GREAT BRITAIN multitude of problems and needs. Conclusions: interviews with staff, experts and patients While patients with metastasized cancer defining relevant issues 2. Operationalization of Background: There is often pressure for experienced a wide variety of problems, they items and dimensions 3. Pilot testing of these specialist palliative care beds. Our admission asked for more support for only a few specific items followed by interviews 4. International requests come in the form of an EBS referral, problems. Evidently ‘problems’ are not field testing of the preliminary versions 5. possibly with additional clinical information or synonymous with unmet needs. Therefore not

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 25 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

only problems, but also needs for care should the team, patient and carers. We want our Abstract number: 119 be assessed. A structural need for support to colleagues to learn from this experience. In Presentation type: Poster cope with fears for suffering and loss of particular we will outline various referral Poster number: P9 autonomy was found. 10% of the patients pathways, assessment mechanisms & expressed a multitude of problems and needs, interventions that have been offered. Key issues Validity and reliability of the Modified and might benefit either from psychological include the re-defining of role function for the Edmonton Symptom Assessment counseling, or a better palliative care. psychosocial / spiritual team. Innovations Scale (M-ESAS) in the Flemish palliative include the setting up of psychosocial / spiritual care population forum to determine how this team best provides Abstract number: 116 support. This is a descriptive study. Strategy Patricia Claessens, Centre For Biomedical Ethics Presentation type: Poster documents address the issue of psychosocial and Law, Leuven, BELGIUM, Kristel Marquet, Poster number: P6 and psychological care, but there is little in the Catholic University, Leuven, BELGIUM, Paul PC literature describing the introduction of new Schotsmans, Catholic University Leuven, OUR EXPERIENCE FROM JAN.01.2004. TO disciplines such as PO into the multi- Leuven, BELGIUM, Bert Broeckaert, Catholic JULY 01.2004 disciplinary team. We know that distressing University, Leuven, BELGIUM, Menten Johan, psychological symptoms require specialist University Hospitals Leuven, Leuven, BELGIUM Adnan Delibegovic, Tuzla, BOSNIA & assessment and treatment modalities. In HERZEGOVI summary we feel that a dedicated psycho- Background: Quality of life in palliative care is oncology team adds a vital component of care negatively affected by the amount of symptoms Our overall vision of palliative care is: Complete to PC services. Discussion regarding the benefits patients are confronted with and the care of the patient when the nature of the and risks of this service model will assist future accompanying symptom distress they undergo. illness is incurable and terminal and the service planning. Adequate symptom control necessitates a prognosis is predictably short. Our focus in systematic and standardized assessment of this palliative care is to provide the best quality of symptom experience. Aim: This study life and care possible for us. In providing Abstract number: 118 investigates the key aspects of the validity and palliative care we aim to: Affirm life and regard Presentation type: Poster reliability of the M-ESAS. Methodology: Our dying as a normal process Provide relief from Poster number: P8 modification of the ESAS (Bruera et al., 1991) pain and other symptoms Integrate the was based on a theoretical model concerning psychological and spiritual aspects of patient Symptom Prevalence and Severity in 59 symptom experience (Armstrong, 2003) and care Offer a support system to help patients live patients with advanced urological entailed adding 10 Visual Analogue Scales to as actively as possible until death. In providing malignancy referred to a Hospital assess symptom distress. Moreover, palliative rehabilitation we aim to: Help patients gain Palliative Care Team care experts (content validity) recommended opportunity, control, independence and dignity the addition of 3 symptoms (dry mouth, Respond quickly to help people to adapt to their Elizabeth Ferguson, Palliative Care, Ayr, GREAT constipation and disturbed sleep) and illness Take a realistic approach to defined goals BRITAIN, Kathleen Sherry, The Ayrshire rephrasing of 3 other symptoms. In a second Take the pace from the individual. The aim of Hospital, Ayr, GREAT BRITAIN, Gwen McAuley, phase we tested this M-ESAS for its validity and this presentation is to show – The numbers of The Ayrshire Hospice, Ayr, GREAT BRITAIN reliability. A prospective, descriptive, those treated in our department from 01.01 to comparative, longitudinal design was used 01.07.2004. The numbers of deaths and those Introduction: Prostatic Carcinoma is the second based on a convenience sample of 56 cancer admitted for rehabilitation who were most common cancer in men in the UK . patients from 3 palliative care units and 39 discharged, *According to sex *According to age Hospital Palliative Care Teams (HPCT’S) provide nurses. On 3 occassions nurses and patients *According to location of primary tumor. The an integrated advisory specialist palliative care independently assessed symptom occurrence total number of patients treated was 122. The service in the acute setting Validated Tools eg and distress. Functional status and depression number of deaths and those discharged in the The Patient Outcome Score (POS) are used to were scored on day 1 of the assessment. Results: period from 01.01.2004 to 01.07.2004. comprehensively and systematically assess Results supported the content, face, construct Conclusion: From the total number of patients symptoms and are effective in this setting. This and concurrent validity. Inter-rater agreement treated, 54% resulted in death and 46% were study reviews referral patterns, HPCT activity, revealed there was a higly significant, but discharged. The majority were men aged patient characteristics and symptom prevalence moderate agreement between patients’ and between 60–70 years, with lung cancer being and severity using POS in 59 uro-oncology nurses’ scores (r = 0.3 – r = 0.6). Internal the most frequent cause of death in men, and patients referred to the team over a 12 month consistency analysis showed that a symptom breast cancer in women. period. Method: Retrospective review of HPCT distress score based on a total score of symptom documentation over 12 months. Data collected; occurrence should be abandoned. Conclusion: Demographic, socioeconomic,reason for M-ESAS is a promising instrument for assessing Abstract number: 117 referral, HPCT activity, ECOG, length of referral symptom experience, though large-scale Presentation type: Poster episode, POS analysis. Results 74 referrals, 59 research (which is being carried out; partial Poster number: P7 patients, Age range 37–90 years, Mean age 71. results available by March 2005) is needed to 54% Prostatic Ca, 10% Renal, 8.5% Bladder, confirm these preliminary results. Lessons from implementing a dedicated 8.5% Other urological cancer, 7% uro- psycho-oncology team into a palliative gynaecological. 95% reviewed within 24 hours. care service 84% referred for symptom control, ECOG:1/2: Abstract number: 120 42%, 3/4 46%. 24 symptoms documented. Presentation type: Poster Peter Martin, Caritas Christi Hospice, HPCT mean contact time 9 days, Desired place Poster number: P10 Melbourne, AUSTRALIA, Diane Clifton, St. of Death discussed in 40%: 66% desired Home, Vincent’s Health, Melbourne, AUSTRALIA, 23% Hospital, 13% Hospice. POS Analysis: 30% Assessing Patients’ Supportive Care Needs: Maxine Braithwaite, St. Vincent’s Health, comleted 1, 24% 2 or more. Initial POS Do High Scores Require Interventions? Melbourne, AUSTRALIA, Brian Lowe, St. symptom severity (moderate or severse: pain Vincent’s Health, Melbourne, AUSTRALIA 66%, Nausea / Vomiting 33%, Fatigue 66%, Teresa Young, Macmillan Centre, Northwood, Anorexia 44%, Constipation 39% Anxiety 44% GREAT BRITAIN, P Ward, CRUK Psychosocial Despite increased need for psychological care in Mouth problems 11% Dyspnoea 33%. Second Oncology Dept, London, GREAT BRITAIN, G palliative care (PC) services few have the POS comparison; Scores for pain, nausea / Field, London, GREAT BRITAIN, EJ Maher, resources to appoint these disciplines to vomiting, anxiety, constipation, dyspnoea Lynda Jackson, Macmillan Centre, Northwood, enhance the assessment and treatment of improved; Fatigue scores increased, anorexia GREAT BRITAIN patients & carers. To address this a dedicated score static. 9 / 28 had ECOG 3 or 4 when psycho-oncology (PO) team, a psychiatrist completing. Mean POS scores: 1. 18.6, 2. 13.7. It is often assumed that QL measures alone experienced in psycho-oncology and 2 clinical Outcomes: 23% died, 57% discharged, 44% identify patients’ distress and need for psychologists, were introduced at a 58-bed PC with specialist palliative care review, 9% supportive care. In practice, staff have difficulty service comprising a mainstreamed acute Hospice transfer Conclusion Detailed analysis recognising distress and identifying tertiary teaching hospital ward and stand-alone of these patients confirms the range of spiritual/social needs and do not appropriately hospice. This allows these professionals to symptoms and concomitant severity in this refer patients to other services. A process develop the focused skills required by this group of patients which is often underestimated developed for assessing the needs of patients in patient population. This is in contrast to a This data will help us to specifically target a research studies may be of value in clinical consultation liaison model utilised by some tailored education programme for the urology practice. 80 patients with advanced breast services. Other PC services may consider multidisciplinary team. cancer were followed through chemotherapy appointing their own PO team. We will discuss until death. Their needs were assessed using the the implementation issues that have arisen EORTC QLQ-C30 and a symptoms & problems during the first 18 months and describe how we checklist. Scores on these measures were have evolved processes following feedback from followed up by nurse researchers, who used a

26 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

response/intervention sheet to assess distress, Abstract number: 122 Abstract number: 124 need and desire for intervention. Preliminary Presentation type: Poster Presentation type: Poster results from 24 patients indicate that there may Poster number: P12 Poster number: P14 not be a strong relationship between high scores and desire for intervention, especially Development of an Integrated Care Prediction of patient survival by 5 when high scores relate to physical, social and Pathway for the Holistic Assessment professional groups in a hospice setting role functioning rather than symptoms. Of 111 of Palliative Care Patients on Admission high scores on only 14 occasions did patients to Hospice Feargal Twomey, Marymount Hospice, desire additional interventions from specialist Liverpool, GREAT BRITAIN, Norma O’Leary, Ita supportive care services. Reasons given were: 1) Dai Roberts, Institute for Learning & Harnett, Tony O’Brien Patients hoped that treatment would alleviate Development, Cheshire, GREAT BRITAIN, Sue

their physical symptoms. 2) Patients with Taylor, St. Ann’s Hospice, Manchester, GREAT Aim To assess the ability of 5 cognate APRIL 8 FRIDAY dyspnoea, fatigue, or poor physical, role or BRITAIN professional groups in a hospice-based social functioning did not expect that any multidisciplinary palliative care team to referral would help. 3) Patients perceived The aim was to develop a holistic patient needs accurately predict the survival of patients themselves to be ‘coping’. For 64 of the high assessment, for use in a 66 bedded hospice, admitted to an inpatient hospice over an 8- scoring symptoms/problems patients structured in the form of an integrated care month period. Method A prospective study of volunteered that acknowledgment of their pathway (ICP), a tool which can facilitate the 221 patients with advanced malignant and non- distress during their assessment was in itself delivery of quality care.1 The need for an malignant disease, drawn from a mixed sufficiently supportive. Quality of life measures improved assessment process was identified urban/rural population of 580,000. Within 48h may identify patients’ significant symptoms from clinical staff, who felt that existing of admission, a member of each group (Ward and/or problems, but they do not adequately assessment was not truly ‘holistic’, dependant Sisters, Registered Nurses, Care Assistants, identify their desire for supportive care. on the skills of the assessors and lacking Consultant Palliative Care Physician and Non- Patients’ desire is more accurately identified appropriate actions/goals. The recently Consultant Physicians) predicted one survival with a patient-completed questionnaire published NICE guidance on Improving category (3 months) for each patient. combined with a staff-administered Supportive & Palliative Care for Adults with Predictions were based on an assessment of response/intervention sheet. A further study is Cancer, also highlighted key areas for the overall status with due regard to all relevant planned to test this assessment process in improvement of patient assessment in specialist information available. No group made a clinical practice. palliative care.2 A multi-disciplinary group prediction for every patient. Results Patients comprising doctors, nurse managers, nurses, were 52% female, mean age 67.2 years. 94.1% social workers, occupational therapists, had a malignancy and of these 87% had Abstract number: 121 psychological support nurse, spirituality metastatic disease. 66.5% were independently Presentation type: Poster support nurse and researcher was established. mobile and 50.7% had a significant medical co- Poster number: P11 Relevant issues to be addressed within an initial morbidity on admission. Ward Sisters were the assessment (on admission) were mapped, from most accurate group, with 45% of predictions An Evaluation of Nurses’ Use of a Graded the perspectives of each of the professionals. correct. When in error, they were more often Measure to Assess Constipation in a Issues were drawn from/scrutinised against pessimistic than optimistic regarding survival Palliative Care In-patient Unit current research evidence. Issues were then (33% vs. 23%), as was the consultant physician grouped and ordered chronologically. Issues to (36% vs. 28%). When incorrect the non- Hilary Smyth, Home Care, Limerick, IRELAND be assessed within the first day/24 hours of consultant physicians tended to be optimistic admission, included generic/demographic (33%). 46.5% of errors in prediction were Standardized stool form assessment is of details, orientation to hospice, functional and inaccurate by one category and when of greater particular value in assessing bowel function in physiological assessments. Days 2–3 focussed magnitude (13.2%) occurred in patients who patients with advanced cancer, and is a task that on the assessment of psychological, social and survived longer. Conclusions This study can be performed consistently by nursing staff spiritual domains, ending with a summary of confirms that though estimated patient survival (Sykes, 1990). The aim of this study was to the patient’s current needs, goals and proposed correlates well with actual survival, it remains in evaluate nurses’ use of a standardized scale actions. All issues within the ICP are recorded, itself an inaccurate predictive tool. We found employed in Milford Hospice, Ireland, in the with unmet items documented through that nursing staff were correct marginally more assessment of constipation. Auditing of practice variance recording. The ICP was piloted for 12 often than medical staff, while senior medical ensures high standards of nursing care are months, with adaptations made in response to and nursing staff when inaccurate, were more consistently being maintained. A retrospective user feedback. Implementation of the ICP has likely to under-estimate survival. review of patient notes was undertaken. resulted in a systematic and timely holistic Nursing constipation assessment charts, with a assessment process for patients. The ICP standardized stool form scale (Davies et al 1986) effectively addresses the NICE Abstract number: 125 displayed, were reviewed. Descriptive statistics recommendations for the assessment of Presentation type: Poster were employed in the formulation of results. specialist palliative care patients. 1. De Luc K Poster number: P15 For the overwhelming majority of patients (2001). Developing Care Pathways. Radcliffe (95%), use of the stool scale was not Medical Press, Ltd. 2. National Institute for The Suffering of Refractory Symptoms – a documented. Documentation consisted of Clinical Excellence (2004). www.nice.org.uk difficult challenge ‘bowels open’ / ‘bowels not open’. Descriptors of stool consistency (hard, soft, normal) and Kim Devery, Department of Palliative and amount (large, small) were documented Abstract number: 123 Supportive Services, Daw Park, AUSTRALIA, infrequently. The study highlights that nurses Presentation type: Poster David Currow, Flinders University Australia, were perhaps using the scale but not Poster number: P13 Adelaide, AUSTRALIA, Katrina Breaden, Flinders documenting its use, were not using the scale University Australia, Adelaide, AUSTRALIA, Meg consistently, or not using the scale at all. A Place of death – an outcome of Home Care Hegarty, Flinders University Australia, Adelaide, minority of nurses appreciated the significance AUSTRALIA of documentation of stool consistency and Jens Papke, Praxis for Oncology, amount in the assessment of constipation. Neustadt/Sachsen, GERMANY To be able to relieve suffering is, probably, one These results have implications for nurses’ use of the reasons many of us chose to work in of research in practice and for nurses’ Qualified palliative care is a chance for terminal health care. Relief of suffering lies at the heart documentation of care. The results initiated a cancer patients to spend the end of life at home. of humane health care, and consequently when review of the stool assessment charts in use, Aim of the study was to investigate the things don’t go according to plan, patient care resulting in the production of a user-friendly proportions of the places of cancer death in our can become extremely fraught for the patient, chart, in which nurses can easily and region and to look for changes in outpatients family and staff involved. Clinicians can find consistently document stool form using a cared by a specialised home care service. In the themselves in some very difficult and standardized graded measure. An evaluation of german rural district Saechsische Schweiz from psychologically draining situations where its use is planned in the near future. 1997 to 2003, 2793 cancer patients came to feelings of inadequacy around patient care death. 49% died in hospital, 44% died at home. combine with highly charged emotions of the References 7% died in nurseries. From 1999 to 2003 249 family and interdisciplinary team. This talk will Sykes, N.P. (1990). Methods of assessment of bowel function terminal cancer patients were cared by a home • Define ‘refractory/intractable’ symptoms • in advanced cancer. Palliative Medicine. 4, pp. 287–292 care service in the same region. From these Discuss and clarify the limits to palliative and Davies, G.J., Crowder, M., Reid, B., Dickerson, J.W.T. (1986). Bowel function measurements of individuals with different patients 68% could spend the end of life at supportive care • Suggest a generic ‘WHY’ eating patterns. Gut. 27, pp.164–169 home. Specialised home care is a human way clinical decision making process for defining a for caring of cancer patients and to allow them symptom as refractory • Present and discuss the spending the end of life with their loved ones at approach to the management of refractory home. symptoms • Discuss the effects of refractory

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symptoms on patients, carers and health care Malignant spinal cord lesions need a specific support the professional caregivers in the workers. The Flinders ‘What the . . .’ framework approach. In the majority of these patients life treatment and decision-making process of is designed to give guidance to clinicians in the expectancy is short, neurologic symptoms vary patients with advanced cancer concerning pain situation where a patient’s symptoms are not over time and other manifestations of the and fatigue. The framework of the decision trees reversible and not responding to palliative tumour or therapies interfere with is linked to the model palliative reasoning of treatments and considered attention. rehabilitation. In order to audit and improve Utrecht (Teunissen 2004). We are currently the quality of care a protocol was developed by developing a method to evaluate the decision a palliative care team. Aims are to: – support the trees as a useful strategy for implementing the Abstract number: 126 patients and relatives in handling spinal cord guidelines into daily practice. Presentation type: Poster lesion combined with terminal disease – Poster number: P16 decrease the length of admission – allow the patient to stay home as long as possible – Abstract number: 129 Development of a measure for physical increase the understanding and competence of Presentation type: Poster functioning in palliative care professionals. The protocol consists of several Poster number: P19 building blocks for analysis: somatic, Jorunn L. Helbostad, Section of Geriatric psychological, emotional, functional and social. CLASSIFICATION OF PATIENTS IN Medicine/ Dep. of Neurosci., Trondheim, While accounting patients autonomy and PALLIATIVE CARE BY THE ESTIMATION NORWAY, Marit S Jordhøy, Nordland Hospital, choices, specific interventions for each somatic OF REMAINING LIFE TIME? Bodø, NORWAY, Ger Inger Ringdal, Norwegian and psychological item and impairment are University for Science and Technology, advised. Special attention is paid to H.Christof Müller Busch, Dep.of Anesthesia, Trondheim, NORWAY, Jon Håvard Loge, communication and information needs. This Pain Therapy and Palliativ Care, Berlin, Norwegian University for Science and protocol offers knowledge and structure to the GERMANY, Thomas Jehser, Technology, Trondheim, NORWAY, Stein Kaasa, health care team. Although we haven’t been Gemeinschaftskrankenhaus Havelhöhe, Berlin, Norwegian University for Science and able to test the protocol in a randomised GERMANY, Inge Andres, Technology, Trondheim, NORWAY controlled trail we applied the guidelines to 50 Gemeinschaftskrankenhaus Havelhöhe, Berlin, patients during the last 4 years. Audit by the GERMANY The project ‘Palliative Assessment Tool – clinical nurse specialist palliative care Computerized’ (PAT-C) aims at developing a underlines the need for specific Aim of investigation: The classification of computer-based tool for assessment of multidimensional attention and standardised patients in palliative care with relation to symptoms and functioning in palliative care care. Standardised care, multidisciplinary remaining life expectancy is a difficult task, patients by using Item Response Theory. approach and co-ordination are now though aims and intentions of care, Physical functioning (PF) is one of the domains guaranteed. communication strategies with patients and included. The PF-study has 4 phases: 1) proxies and the consideration on perhaps Systematic literature study to identify existing burdensome diagnostic and therapeutic questionnaires for PF assessment 2) Decide for a Abstract number: 128 procedures depend on a time related prognosis conceptual framework to classify aspects of PF Presentation type: Poster of expected outcome. The intention of this 3) Evaluate the conceptual framework and Poster number: P18 study was to relate a prognostic classification chosen aspects by an expert panel. 4) Extract PF system on decision making and consequences items from identified questionnaires in Multidisciplinary decision trees in of care palliative care. Methods: Between 2001 accordance with phase 2 and 3 to develop a symptom management and 2004 750 patients on admission to the final item pool for the PAT-C PF. The present Palliative Care Unit (PCU) of Havelhöhe where study reports results of the first two phases. A Henk Vrehen, Haematology, Utrecht, consecutively grouped into the staging system systematic PubMed search up to June -04 was NETHERLANDS, Ginette Hesselmann, of Jonen-Thielemann, which differentiates conducted for the term physical University Medical Center Utrecht, Utrecht, rehabilitative, preterminal, terminal and final functioning(ing) AND terms related to NETHERLANDS, Birgit Frohleke, phases. Outcome parameters were analysed population (e.g. old, frail, cancer, HIV) AND Comprehensive Cancer Center Midden with relation to clinical diagnosis, main related to assessment or outcome. 2334 papers Nederland, Utrecht, NETHERLANDS, Wynand symptoms and kind of care. Results: The met the selection criteria. Adding ‘quality of Ross, University Medical Center Utrecht, predominant classification into the preterminal life’ (QoL) to the searching terms, gave 24 836 Utrecht, NETHERLANDS, Saskia Teunissen, stage of most of our patients on admission hits, thus QoL was excluded. All abstracts were University Medical Center Utrecht, Utrecht, signified the prognostic uncertainty and ethical screened to detect named instruments. Of 251 NETHERLANDS dilemmas on decision making, communication identified, those assessing only symptoms, and consequences of care in patients in ‘earlier’ single domains other that PF, or patients with Introduction During the period 1999–2001 the end-of-life situations, while classification into non-relevant diseases (e.g. sinusitis) were Centre of Development of Palliative Care terminal, final and rehabilitative stages enabled excluded (N=53). Additional instruments were Utrecht developed best practice guidelines a more patient centred approach by identifying identified from a book- review of PF, leaving at concerning 23 symptoms and problems in individual concerns. Conclusion: Classification total of 188 for extraction of PF-items. The palliative care. Between 1994 and 2000, of patients in palliative care using a time related International Classification of Functioning oncological nursing guidelines were developed prognostic score could improve patient-centred Disability and Health (ICF) was chosen as a for 19 symptoms and nursing problems by the approaches in different end-of-life situations. conceptual framework. An enormous amount Dutch Association of Comprehensive Cancer Criteria for the preterminal phase should be of work has been done to develop PF Centres. These guidelines have not yet been further investigated. questionnaires for various settings. In contrast, structurally implemented in daily practice. conceptual frameworks are missing and there is Evaluation showed limited use due to a lack of consensus on which PF aspects to extensiveness of the guidelines and the lack of Abstract number: 130 include. Further research is necessary to identify crucial decision points in the initial assessment Presentation type: Poster precise items for PF assessment in general and and forthcoming treatment actions. An Poster number: P20 for palliative care settings in particular. implementation strategy and a supportive tool were lacking. Methods The goal of this project Who should assess the patient’s spiritual was the development of decision trees for the care needs? A randomized study. Abstract number: 127 treatment of pain and fatigue of patients with Presentation type: Poster advanced cancer. Each guideline was translated Gian Domenico Borasio, Munich University Poster number: P17 into a compact multidisciplinary decision tree Hospital – Grosshadern, München, GERMANY, in which the crucial decisions of the guidelines Irma Biechele, Pastoral care team, Munich On the move: a protocol for the care were summarized. The Delphi method that was University Hospital – Grosshadern, Munich, for patients with malignant spinal used in order to reach a consensus on the GERMANY, Peter Frör, Pastoral care team, cord compression decision tree has allowed efficient and effective Munich University Hospital – Grosshadern, combining of expertise from a group of Munich, GERMANY, Carola Riedner, Oncologist Ginette Hesselmann, Department of Medical regional dispersed experts. The advisory team in private practice, Munich, GERMANY, Eckhard Oncology, Utrecht, NETHERLANDS, Ellen de (n=23) consisted of nursing, medical and Frick, Department of Psychotherapy and Nijs, University Medical Centre, Utrecht, paramedical experts, including the regional Psychosomatics, University of Munich, Munich, NETHERLANDS, Eline Lindeman, Rudolf consultants of the palliative care team. Content, GERMANY Magnus Institute, Department of practical use and application were analyzed and Rehabilitation, Medicine University Medical evaluated. Results The returned questionnaires Background: Assessment of the patients’ Centre Utrecht and Rehabilitation Centre De have been analyzed and 2 compact decision spiritual care needs is an integral part of Hoogstraat Utrecht, Utrecht, NETHERLANDS, trees based on the multidisciplinary and palliative care. We developed a semi-structured Saskia Teunissen, University Medical Centre, multidimensional guidelines have been interview with the acronym SPIR, based on the Utrecht, NETHERLANDS developed. Conclusion The decision trees FICA interview by C. Puchalski. The aim of the

28 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

study was to test the effect of the administration had an impressive relative risk of dying before Bellerive, SWITZERLAND, Huguette Guisado, of the SPIR to palliative care patients in different patients with none of these symptoms of 9.1. CESCO, EMASP, Collonge-Bellerive, contexts and by different professionals. Conclusion: Patients with nausea, vomiting, SWITZERLAND Methods: The study took place in two dysphagia, dyspnoea, confusion and cognitive outpatient settings (a private oncology practice failure have a significantly worse prognosis, Objectives: Since 1999, a mobile pain and and a psycho-oncology outpatient clinic) and regardless of diagnosis. A comprehensive palliative care team (physicians and nurses) two inpatient settings (patients followed by the assessment of symptoms is necessary to propose consultations to all the units of the Palliative Care Team in the Munich University determine cluster analysis and prognosis in Rehabilitation and Geriatric Department. After Hospital, and a comparison group of patients advanced cancer patients. three years of activity, the mobile consult team with non-life-threatening, non-chronic illnesses wanted to evaluate his effectiveness on a more from the same hospital). All patients were qualitative way. We decided to complete our

assessed with the SPIR and then asked to rate Abstract number: 132 balance sheet according to the quality standards APRIL 8 FRIDAY the helpfulness and the distress caused by the Presentation type: Poster of the Swiss Palliative Care Association. Method: interview using visual analogue scales (0–10). Poster number: P22 The seven different fields of the quality The interviewer answered the same questions standards were analysed, commented according for him/herself. The palliative care inpatients THE NEED FOR PSYCHOSOCIAL CARE IN to our database (consultation, education and were randomly assigned to receive the PEOPLE WITH CANCER AND THEIR research) and objectives for the next year were assessment from either a physician or a RELATIVES IN AN OUT-PATIENT CLINIC putted down. We decided to include also chaplain. Results and Discussion: 98 patients patients with chronic pain. Results: In the first took part in the study. Preliminary data analyses Manon Boddaert, dept. of medical oncology, field, concerning the patient, different indicate (i) a high overall importance of Amsterdam, The Netherlands, E van Triest, questions were raised: should the mobile team spirituality (6.7±2.8); (ii) a good acceptance of Medical oncology department,VU medical complete the assessment tools if the team in the SPIR (helpfulness 7.2±2.6, distress 1.0±2.1); centre, Amsterdam, The Netherlands, MHM van charge of the patient don’t do it? How to (iii) no significant differences in the patients’ der Linden, Medical oncology department,VU measure quality if the therapeutic propositions ratings of the SPIR between physicians medical centre, Amsterdam, The Netherlands, G are not applied by the team in charge of the (helpfulness 7.0±2.7; distress 1.0±2.2) and Giaccone, Medical oncology department,VU patient? How to collaborate with other chaplains (helpfulness 7.7±2.4; distress 0.9±1.8). medical centre, Amsterdam, The Netherlands, professionals (social workers i.e.) without « Several patients commented very positively on HM Pinedo, Medical oncology department,VU short-circuiting » the team in charge of the being asked by a physician about their spiritual medical centre, Amsterdam, The Netherlands, patient? Is it the role of the mobile team to needs. The involvement of chaplains in a WR Gerritsen, Medical oncology discuss with the patient his diagnosis or scientific study aimed at evaluating practical department,VU medical centre, Amsterdam, prognosis? In the second field concerning the aspects of spiritual care is a new step in the The Netherlands family: Others questions raised: Should a multiprofessional cooperation in palliative care mobile team support the family? Or should the at our hospital. We hope that this study will Background. The first purpose of this study was mobile team only support the team in charge of help strengthen the role of spiritual care within to determine the prevalence of the need for the patient if the situation is complex? The 5 the provision of medical care to patients with psychosocial care in patients with cancer and fields that concern the organisation of the life-threatening illnesses. their relatives in the out-patient clinic of our mobile team, the structural aspects, the hospital. The second purpose was to assess the education and research were easier to complete. nature of the expressed need. The different criteria were also adapted for the Abstract number: 131 Methods. A simple questionnaire to assess chronic pain consultation. Conclusion: The Presentation type: Poster psychosocial needs was developed by the quality standards of the Swiss Palliative Care Poster number: P21 investigator and approved by a board of Association (in particular the ‘clinical’ fields) oncologists, nurses, psychologist, social worker are mainly adapted for the teams in charge of Prognostic significance of symptoms and minister. A total of 217 patients and the patients. These different criteria must be to survival relatives attending the out-patient clinic of the adapted for consult teams. Like chronic pain is medical oncology department were given this multidimensional in particular in elderly Saskia Teunissen, University Medical Centre Psychosocial Care Needs Questionnaire to patients the palliative care criteria can also be Utrecht, Utrecht, NETHERLANDS, Alexander De complete. 184 (85%) completed questionnaires used. Graeff, University Medical Centre Utrecht, were returned. The population consisted of 119 Utrecht, NETHERLANDS, Emile Voest, patients (65%), 52 spouses (28%) and 13 family University Medical Centre Utrecht, Utrecht, members (7%). Abstract number: 134 NETHERLANDS Results. 63% of the responders perceive a need Presentation type: Poster for psychosocial care or expect to need Poster number: P24 Background: Advanced cancer patients have a psychosocial care in the near future. Of this variety of distressing symptoms. Their group the nature of their need was assessed. Physical compatibility of oxycodone prognostic significance with regard to survival 70% express a need for emotional counselling, injection with supportive drugs in has not been systematically studied. Methods: 26% have a need for information about palliative care Symptoms (type and severity) were assessed nutrition, 25% have a need for information on during an in-depth interview by a clinical nurse chemo-therapy and 22% want counselling to Andrew Dickman, Pharmacy Dept, Liverpool, specialist with 181 cancer patients (46% male, cope with pain. GREAT BRITAIN, Simon Hunter, Whiston 54% female) referred to a university hospital Conclusions. Considering two thirds of the Hospital, Liverpool, GREAT BRITAIN palliative care team. Almost half of the patients responders perceive a need for psychosocial care were treated with chemotherapy (19.3%) or it seems warranted to offer all patients and their Although oxycodone injection has been radiotherapy (28.2%) during the last three relatives the possibility of receiving available in the UK since May 2003. its use in months before the referral to the PCT. Almost psychosocial counselling as part of their continuous subcutaneous infusions has not half of the patients were severely disabled and treatment in the medical oncology department. been widespread. One of the main reasons for bed bound. For 90 patients scores were available On assessing the perceived need for this is the lack of comprehensive compatibility from the Edmonton Symptom Assessment psychosocial care the diverse nature of the need data, such as those available for diamoprhine Schedule (ESAS). Medical data and survival were warrants a multidisciplinary approach. Thus and . The aim of this study was to recorded. The prognostic significance of the offering comprehensive supportive care instead assess the compatibility of oxycodone with most frequent symptoms was analysed using of psychosocial care alone. mixtures containing one, two and three Cox regression and multivariate linear and supportive drugs commonly encountered in the logistic regression analyses. Results: We palliative care setting. Investigations were recorded 20 different physical and Abstract number: 133 carried out over a 24 hour period. Twenty nine psychological symptoms occurring in >10% of Presentation type: Poster syringes containing a standard 100mg patients. 98% of the patients have died. Survival Poster number: P23 oxycodone combined with various supportive at two months was 53%. The ESAS-scores for drugs were prepared extemporaneously. They anorexia, nausea, dysphagia, dyspnea and How to measure the effectiveness were made to a 20ml volume with saline 0.9%. drowsiness were significantly correlated with of a mobile pain and palliative A repeat experiment was performed using Water survival. After correcting for age, gender and care consultation? for Injections as the diluent. The syringes were diagnosis, nausea, vomiting, dysphagia, stored at room temperature under artificial dyspnoea, confusion and cognitive failure were Sophie Pautex, Dèpartement de Gèriatrie, light. Visual checks for precipitation, independent predictive factors of survival. Collonge-Bellerive, SWITZERLAND, Dominique crystallisation and discolouration using Patients with had an increased chance of dying Ducloux, CESCO, EMASP, Collonge-Bellerive, polarised light were performed at 0, 8 and 24 (in months) of 1.7, 1.6, 1.7, 1.7, 2.5, 1.6, SWITZERLAND, Laurence Derame, CESCO, hours. The pH of the solutions was also checked respectively, compared to patients without these EMASP, Collonge-Bellerive, SWITZERLAND, at 0 and 24 hours. All test syringes symptoms. Patients with 4 of these symptoms Elisabeth Cabotte, CESCO, EMASP, Collonge- demonstrated no precipitation, crystallisation

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 29 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

or discolouration and pH values remained its usefulness. STAS has been used in this spread of disease, yet evidence suggests that this within expected limits after 24 hours. It can be specialist palliative care unit as a clinical audit simple procedure is often not performed by concluded that oxycodone injection is tool. This sample of 1000 patients is the largest health care professionals (Pittet et al, 2000; RCN physically compatible with the combinations of ever presented. Aims and Objectives: 1 To 2000). While great emphasis has been placed supportive drugs investigated over a 24 hour describe the patient population ie age, sex, on hand washing and infection control in the period. religion, diagnosis, symptom profile on acute hospital setting, little has been admission. 2 To provide detail on the STAS documented regarding these issues in a hospice scores of patients correlating with diagnosis and setting, and yet the philosophy of Palliative Abstract number: 135 other variables. Results: This sample of 1000 Care is to improve the patient’s quality of life Presentation type: Poster sequential deaths in a specialist palliative care through prevention and relief of suffering by Poster number: P25 unit will provide useful information on both means of early identification and impeccable symptoms and psychosocial issues. The use of assessment and treatment (WHO 2003). In a Measuring Satisfaction with STAS as an audit tool will be discussed small audit carried out on an in-patient unit of Terminal Care: Development and Testing identifying its strengths and weaknesses. an inner city hospice, we found that: 42.5% of of Two Tools Nursing Staff, 18.5% of Paramedical Staff and 0% of Medical staff washed their hands in Ireen M. Proot, Institute For Bioethics, Abstract number: 137 accordance with established guidelines (NICE, Maastricht, NETHERLANDS, Veron Presentation type: Poster 2004). Although the audit did not look at the Schrijnemaekers, Centre for Development of Poster number: P27 effectiveness of hand washing techniques it has Palliative Care, Maastricht, NETHERLANDS, supported the claim that, hand washing, while Liesbeth van Hoef, Centre for Development of Assessment of caregivers satisfaction: an essential element of care, is not currently an Palliative Care, Maastricht, NETHERLANDS, results of the use of a questionnaire in integral part of the culture of all health services Annemie Courtens, Centre for Development of Biella’s Palliative Care Network (CDC, 2002). Palliative Care, Maastricht, NETHERLANDS, Huda Huijer Abu-Saad, American University of Carlo Peruselli, Palliative Care Unit / Oncology Beirut, Beirut, LEBANON Dept., Biella, ITALY, Maffeo Michele, Palliative Abstract number: 139 Care Unit, Biella, ITALY, Basiricò Tiziana, Fondo, Presentation type: Poster Aim: In this study two instruments have been Biella, ITALY, Zublena Nicoletta, Hospice, Biella, Poster number: P29 developed for measuring satisfaction with end- ITALY, Bider Chiara, Hospice, Biella, ITALY of-life care from the perspectives of terminally Transfusions in Palliative Care ill persons and their caregivers. Emphasis was Since January 2002, families of patients assisted placed on development of person-perceived by the Palliative Care Network (PCN) in Biella Ulla Martinsson, Oncology, Uppsala, SWEDEN, questionnaires which are short and easy to have received a questionnaire in order to Staffan Lundström, Dept of Palliative Medicine, complete. Method: A review of qualitative evaluate how satisfied they are with the care Stockholms Sjukhem, Stockholm, SWEDEN research into the experiences of terminally ill given. The questionnaire is given to all the persons and informal caregivers was used to patients’ families assisted both at home and in Transfusions are expensive and, especially in develop domains and item pool. This result has the inpatient hospice. The percentage of replies home care, time consuming. It is therefore been reviewed by selected experts from the received was 62% in 2002 and 71% in 2003. The important to have clear indications set up for palliative care field, including ‘experienced’ questionnaires are anonymous and they are each pt. We used the palliative care research experts (patient and informal caregiver). The sent to the home address together with a pre- network in Sweden (PANIS) to outline the tools were tested between February 2003 and stamped envelope to facilitate the reply: they frequency of transfusions during one month in January 2004 in home care, hospital, nursing are sent out 1–2 months after the patients spring 2004. 22 palliative care units home and hospice (patients n=43; informal death. In the putting together of this participated. The information was collected by caregivers n=39). Results: The tools include the questionnaire we have tried to evaluate not only questionnaires at the end of the study period following domains (differing domains for the overall satisfaction for the care, but also to and registered through a web based survey caregiver satisfaction between parentheses): analyse specific aspects referred to the symptom generator. The median age of the population continuity and organization of care, autonomy control, psychological and social support and (1047 pts) was 68 yrs (55% females). 146 pts and control (keeping control), physical aspects, the speed at which problems were addressed. (14%) were treated in in-pt units and 901 pts instrumental support, information (and Results: –The caregiver’s satisfaction on the care (86%) in their homes by advanced home care instruction), emotional support, existential and given by the PCN is very high. –The symptom teams. 907 pts (87%) had cancer. 175 pts (17%) spiritual aspects, family, approach by control, both referred to the whole period of had transfusions during this month. professionals, competence/reliability of assistance and the last hours of life, appears to Haematological malignancy: 39% had professionals. The format is that only in case of be better in the Hospice in respect to the care at transfusions, prostate cancer: 31%, not enough satisfaction at a given item, home. It was to be expected, considering that colorectal/lung/breast cancer: 10–14%, non- questions about the importance of the item, care in the Hospice is more continuous than at malignant pts: 11%. 49% of the transfusions caregivers involved and possible improvements home. –Very positive the judgement reported were given in private homes. 53% of the pts had have to be filled in. The clinical utility, on psychological support to the family on the a central venous catheter or a subcutaneous feasibility, content validity, and internal part of the P.C. team. –Caregivers reported that venous access. 171 pts had erythrocyte consistency (Cronbach’s alpha patient tool the patient’s wishes were always respected; it’s transfusions with a mean amount of 2,9 units 0,87; caregiver tool 0,84) appeared to be good. an important ethical issue, which is not always given to each pt at 1,6 occasions. For 103 pts a Discussion: This study has shown that the tools analysed in similar questionnaires in Italy. –As haemoglobin level below which a transfusion identify relevant information about patient and regards the place of death, the data referring to was supposed to be given was specified in caregiver satisfaction concerning the care given the home (the preferred place, both by patients advance (median 90 g/l). It was considered that (clinical relevance), and might also be useful as and relatives) appear significantly different in at least 117 pts (68%) benefited from their outcome measures in studies into palliative care respect to the Hospice. These data confirm what erythrocyte transfusions. For 44 pts the (scientific relevance). Further research is needed is well known: in Italy, home, if possible, advantage was uncertain and for ten pts the into the validity and reliability of the tools. remains the patient’s preferred place to live the transfusions were of no use. 73% of those 70 yrs end of the life, even if the Hospice represents a or younger (n=100), but only 62% of the older fundamental opportunity in a palliative care pts (n=71), benefited from the treatment. The Abstract number: 136 network for those patients who cannot be mean transfusion time was 80 min/unit. Only Presentation type: Poster assisted at home. 14 pts had thrombocyte transfusions. We Poster number: P26 conclude that treatment with erythrocyte transfusions in palliative care is quite common, The use of Support Team Assessment Abstract number: 138 and that most patients, especially the younger Schedule (STAS) in 1000 sequential patient Presentation type: Poster ones, benefit from the treatment. deaths in a specialist palliative care unit. Poster number: P28

Liam O’Siorain, Palliative Care, Dublin, Hand Washing Audit on a Hospice IRELAND In-Patient Unit

Background: STAS is one of the few validated Maura Cochrane, Patient Services, Quality, tools used as a clinical outcome measure in London, GREAT BRITAIN, Michael Coughlan, St palliative care. It has been used for over 14 years Joseph’s Hospice and City University, London, in a variety of different settings and has GREAT BRITAIN accumulated a significant number of published papers. Newer tools are being developed with an Hand washing is widely acknowledged to be the emphasis on patient rating calling into question single most important activity for reducing the

30 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 140 patients, 73.9% were men, mean age 65.5 y, completed by medical and nursing staff, to Presentation type: Poster CAGE + 25.6%, Past history of psychopatology assess: frequency of use, usefulness of Poster number: P30 20.2%, ESS II+III 43.3%, MME < 24, 12.8% at 1st documentation, multi-disciplinary working, visit. The mean time between 1st and 2nd visit quality of care, facilitation of patient and carer Review of opioid rotation to methadone was 21 days, and between 2nd and 3rd visit was involvement and standard of education and in a specialist palliative care unit 27.5 days. Between 1st and 2nd visit, pain (p= training. Results: 63% response rate (83/132): 0.27) and depression (p=0.47) improved, and Length of use of pathway: range 6–24 months, Cathryn Bogan, Palliative Medicine, Cork, between 1st and 3rd visit a sig. improvement is median 15. 92% of respondents agreed ICP was IRELAND, Tony O’Brien, Marymount Hospice, seen in pain (p=0.001), anorexia (p=0.027), useful with clear goals of care. 66 (80%) judged Cork, IRELAND insomnia (p=0.042) and depression (p=0.009). the Pathway as multi-disciplinary, but 10% Looking at the predictive model Karnofsky assessed the sections for each discipline as

Introduction: Over 18 months a number of index (or =1.06; C.I.95%(1.05–1.08) and anxiety unclear. Greatest effect was changing practice in APRIL 8 FRIDAY patients have been opioid rotated to methadone (or=0.92; C.I.95% (0.86–0.98) are able to the community (74%) and hospital (69%) with despite the absence of a standard conversion correctly classify 71.7% patients whom will or improved symptom management, holistic care, regime. We review prescribing patterns with a not arrive to a third consecutive visit. communication and co-ordination of care. 82% view to developing a protocol. Aims and Conclusions: a) Patients able to attend 3 stated ICP improved quality of care to patients Methods: The aim was to review prescribing consecutive visits in our clinic obtains an by improved documentation, facilitation of practices when opioid rotating patients to overall good control of symptoms, but weakness patient and carer involvement 48% and 65% methadone. Patients opioid rotated to and anxiety. b) Patients with low Karnofsky respectively. 16% in hospital and community methadone for pain control were included; index and high anxiety are at risk of need an perceived the ICP as too time-consuming. 55% those prescribed methadone for its antitussive early admission, so careful follow-up and extra assessed training as effective, however18% were properties were excluded. We performed a alert on the emotional situation of the patient dissatisfied of whom; the majority were retrospective chart review and recorded data and family should be mandatory. c) It is needed community staff. A common theme was including the total daily pre rotation opioid to review our current policy on weakness and improved support in the decision-making (PRO) dose and route of administration, the anxiety management. process of commencing the pathway and starting and final doses of methadone, number symptom management. Conclusion: Majority of days for conversion and morphine of users reported the ICP as an effective tool, equivalent:methadone conversion ratio. Abstract number: 142 which improved quality of care by changing Results: 17 patients were opioid rotated to Presentation type: Poster practice for care of the dying, in particular in methadone. Neuropathic pain was the Poster number: P32 hospital and community settings. User predominant feature for all patients. 16/17 were evaluation resulted in extension of length of commenced on a regular twice daily dosing Take ‘as directed’: Audit of the staff training and on-going support with schedule (usually 5mg bd). In 14/17 patients the transcription of prescription instructions appointment of pathway facilitators. PRO dose was reduced by 33.7% on day 1 and the mean time to cessation of PRO was 4.9 days. Karen Groves, WL, S&F Palliative Care Services, Average time to stabilization was 6.94 days. Southport, GREAT BRITAIN, Justine Purnell, Abstract number: 144 Discussion: Our results indicate that despite the Queenscourt Hospice, Southport, GREAT Presentation type: Poster lack of protocol for opioid rotation to BRITAIN Poster number: P34 methadone, certain trends have developed. Methadone is introduced as a regular twice In palliative care the importance of correct DEMAND OF PALLIATIVE CARE: NURSING daily dose (5mg bd if the equivalent daily dose timing of medication in order to achieve good CASE MANAGEMENT PREVIOUSLY TO of oral morphine is >100mg and 2.5mg bd if it symptom control cannot be overemphasised. It FIRST INTERVENTION OF A PALLIATIVE is <100mg) with a fixed dose (5mg or 2.5mg) was discovered that, despite accurate CARE TEAM. used to treat breakthrough pain. When rotating instructions being written on the prescription, to methadone the PRO is reduced by a third on and compliance sheets with detailed Nuria Codorniu-Zamora, Palliative Care Service, day 1 and is stopped within five days. Our instructions being given to patients and carers, LHospitalet-BCN, SPAIN, Albert Tuca-Rodriguez, review has limitations, namely insufficient the instructions subsequently written on the Instiut Catala d’Oncologia, LHospitalet-BCN, documentation of pain scores and adverse drug label by the pharmacist often bore little SPAIN, Josep Porta-Sales, Instiut Catala effects, thereby prohibiting comparison of resemblance to the prescriber’s instructions. An d’Oncologia, LHospitalet-BCN, SPAIN, Eulalia efficacy of this routine with previously audit was carried out to compare the Alburquerque-Medina, Instiut Catala described schedules. We are currently drafting a instructions requested by the prescriber d’Oncologia, LHospitalet-BCN, SPAIN, Esther protocol based on these results. (Consultant in Palliative Medicine) on the FP10 Corrales-Baz, Instiut Catala d’Oncologia, prescription, with the instructions written by LHospitalet-BCN, SPAIN the pharmacist (several community Abstract number: 141 pharmacists) on the drug box, packet or bottle Introduction: Nurse of palliative support team Presentation type: Poster when dispensed, over a period of 6 months. of hospital manages all demands received to Poster number: P31 This poster describes the audit results and the look after terminal ill patients. The aim is the intervention subsequently undertaken to selection of the best palliative resource Symptom control and prediction of improve congruence. (hospital, socio-health centre and home teams) follow-up of far-advanced cancer patients according needs of every specific situation. The in a palliative care outpatient clinic information process is obtained by means a Abstract number: 143 structured questionnaire recorded by phone Josep Porta-Sales, Palliative Care Service, Presentation type: Poster contact. The needs assessed are: disability level, L’Hospitalet-BCN, SPAIN, Gala Serrano- Poster number: P33 priority of care related with symptoms severity, Bermudez, Institut Catala d’Oncologia, ability hospital transfer, real and potential L’Hospitalet-BCN, SPAIN USER EVALUATION OF THE palliative care home teams. The result of case IMPLEMENTATION OF THE CARE management depends of a consensus between Aim: To describe patients attending our PATHWAY FOR THE DYING IN HOSPITAL, patient, family and the health team who will outpatient clinic and know how much HOSPICE AND COMMUNITY finally look after the patient. The complexity of symptoms can be controlled and to identify this management model generated the need to predictive variables of withdrawal of Stephanie Gomm, Palliative Care Team, audit this process in order to describe all its ambulatory follow-up. Method: We enrol SALFORD, GREAT BRITAIN, Catherine Byrne, steps and assess its effectiveness. Aims: Describe consecutively patients attending outpatient Hope HOSPITAL, SALFORD, GREAT BRITAIN, the work method of nurse who establishes case clinic from October 02 to September 03. A ROBIN GENE, Salford PCT, SALFORD, GREAT management. Implement and assess the standardized collection of data was always done, BRITAIN effectiveness of an audit system. Method: including Numeral Verbal Rating (0–10) for Structured questionnaire recorded in the first pain, anorexia, constipation, insomnia, Aim: To evaluate the implementation of the phone contact to all demands. Follow up form weakness, anxiety and depression. Only patients Liverpool Care Pathway for the Dying (LCP) that make possible obtain data about the able to attend 3 consecutive visits were across hospital, hospice and community patient’s characteristics, selection of best considered assessable. Wilcoxon test was used in settings by professional user views on the use, palliative resource, visit prioritisation and final comparing symptom scores, and logistic usefulness of the pathway in the delivery of result of this management. The recruitment regression to identify predictive variables of multi-disciplinary terminal care and the quality period has been 36 moths (November 2001 and ambulatory follow-up withdrawal. Results: of education and training. Methods: The LCP November 2004). Results: We have complete During the study period 534 patients were was piloted across 2 health districts (popn more of 1,800 demands and 5,400 phone calls enrolled. Only 203 (38%) were assessable, 445,000) in hospice, hospital and community, of follow-up. In preliminary analysis we have mainly cause of removal was Palliative Care with training provided by the specialist tried a sample of first 104 patients. The results Unit admission (75%). Of the evaluable palliative care services. User questionnaires were were: a) 77% were finally visited in out patient

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 31 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

clinic of acute hospital with an attending visit, 5) telephone contact. Results 238 on drug charts and medicine policies help compliance of 90,5%; b) 13% palliative home consecutive patients were evaluated reduce the risk of drug administration errors. team; c) 3% died previously in acute hospital in 10/13/03–12/31/03. 100 (42%) were not followed. We aim to assess quality of documentation of no palliative services; d) 5% admission to no The median follow up for 138 patients was 25 our prescription charts. Method & Results: We palliative service of acute hospital; e) 2% no days (3–105 days). The median age was 65 reviewed inpatient charts in our hospice over a possibility of patient contact. Conclusion: We (18–102 years), 56% were female; 73% Caucasian one week period. This included the pre-printed clearly identify the role of nurse in case and 25% African American. Cancer diagnosis PRN section, which has common PRN drugs management, in make decision process and the accounted for 195 (84%). Initial service contact that need dose and frequency stating then correct use of resources. A standard process was: 1) in-patient consultation 47%, 2) outpatient signing. 98% of charts had accurate patient improves effectiveness in relation to a no consultation 38% 3) direct admission 18%,. details recorded and were legible. 70% of systematic process. Referrals were from medical oncology (49%), amended prescriptions were rewritten internal medicine (34%), and surgery (15%) separately as per policy. Of non-opioids services. 74% were followed collaboratively. prescriptions only 31% were prescribed Abstract number: 145 generically and 53% for opioids. For PRN Presentation type: Poster prescriptions only 16% had possible frequency Poster number: P35 Abstract number: 147 of administration documented. Conclusions: Presentation type: Poster We feel the good level of documentation and An audit of out-of-hours calls in a Poster number: P37 legibility reflects a wish to reduce risk of errors, domiciliary home care team setting. minimise requests to rewrite prescriptions for Palliative Care needs and Palliative Care improved legibility and an individual sense of Aine Hale, Palliative Care, Dublin, IRELAND, input in a major UK Cancer Centre accountability. Given the number of dose Liam O’Siorain, Our Lady’s Hospice, Dublin, alterations (i.e. opioid titration), a level of 70% IRELAND Till Kroeber, Palliative Care Centre, London, of prescriptions being rewritten is moderate. GREAT BRITAIN, Christopher Farnham, The pre-printed section reduces number of Background: Home care teams are a well Camden Primary Care Trust, London, GREAT available sections for further drugs and hence a established part of a specialist palliative care BRITAIN reluctance to completely rewrite prescriptions. service. In Ireland they usually function as a We still use non-generic prescriptions and feel support to the community services including OBJECTIVE: Assessment of current PC this was due to an attempt to minimise general practitioners and public health nurses. [Palliative Care] needs and of input by the PC confusion (e.g. Buscopan). There are 2 pre The provision of an out of hours service (from liaison team for Onc [Oncology] and Haem printed opioids on the chart. The morphine 6pm to 8am) varies in practice. In Our Lady’s [Haematology] patients in one the largest UK prescription was often amended to clarify an Hospice, out of hours is covered by phone Cancer Treatment Centres. The aim was to aid immediate release preparation should be used. advice from nursing staff on the inpatient unit. planning of PC services after future relocation It also does not account for the wide range of Objective: To review the existing out-of-hours to a private initiative NHS hospital with an now commonly used opioids. The frequency for service offered and to establish whether it is ambulatory care centre. METHODS: For this PRN drugs use was poorly documented because adequate to meet the needs of patients and survey a staff questionnaire was designed and the pre-printed section has a maximum 24-hour families. Methodology: A prospective study was ethics approval sought. One questionnaire per dose section but none for frequency of carried out over 12 weeks. Home care team patient was filled out by the nurses on the Onc administration. We plan to: · Reconsider which members completed a questionnaire following and Haem wards on the 16th December 2003. medications are included PRN. · Incorporate a every out-of-hours call. Results: 114 The data was analysed with Excel. MAIN specific frequency section. · Create a local policy questionnaires were completed. 95% of callers RESULTS: 74 of 75 questionnaires were returned for opioid generic prescribing. phoned the Palliative Care Unit (rather than and analysed [39 Onc, 35 Haem]. 30% of hospital/GP) Most calls were about symptom patients had experienced severe or control/medication. A small number of patients overwhelming pain during their admission; Abstract number: 149 were seen at accident and emergency 23% experienced severe or overwhelming Presentation type: Poster departments. Conclusion: Most problems were symptoms other than pain; 32% were anxious, Poster number: P39 resolved by phone. The few admissions to worried or depressed for most of the time. Of hospitals during the audit were appropriate ie those 68%, 65% and 72% were seen by the PC Internet use by cancer, palliative and chest infections. team respectively. 19% of patient’s family or supportive care professionals: Data from friends expressed anxiety or concerns the PIES website evaluation repeatedly. In 50% of these cases the patient Abstract number: 146 had been seen by the PC team. Symptom Richard Stevens, Academic Palliative Medicine Presentation type: Poster control was the reason for admission in 11% of Unit, Sheffield, GREAT BRITAIN, Hilde Poster number: P36 patients. The PC team saw 22 patients in total. 3 Hjelmeland Ahmedzai, University of Sheffield, had been referred but had not been seen yet. 8 Sheffield, GREAT BRITAIN, Sue Knights, A Prospective Study of Palliative Medicine had neither been seen nor referred but had PC University of Sheffield, Sheffield, GREAT Service Utilization in an Academic Center needs. CONCLUSIONS: More than 40% of BRITAIN, Sam Hjelmeland Ahmedzai, patients had symptoms indicative of PC needs. University of Sheffield, Sheffield, GREAT Declan Walsh, Hematology/Oncology, 33% were referred to the PC team, leaving BRITAIN Cleveland, OH, U. STATES, Philip Shaheen, MD, approximately 10% who would potentially The Cleveland Clinic Foundation, Cleveland, U. benefit from PC input. Less than half of BACKGROUND: Professionals in cancer, STATES, Bassam Estfan, MD, The Cleveland distressed relatives were known to the PC team. palliative and supportive care, need access to Clinic Foundation, Cleveland, U. STATES, Ruth A single assessment tool which includes a good quality information. Much is already L. Lagman, The Cleveland Clinic Foundation, screen for relatives’ distress might increase the available via the internet, but users need a Cleveland, U. STATES, Susan B. LeGrand, MD, pick up rate of patients as well as families that simple reliable filter. PIES FACP, The Cleveland Clinic Foundation, require support. Further studies could employ (www.piesforcancer.info) stands for Cleveland, U. STATES patient questionnaires to increase reliability and Personalised Information, Education and validity. They could also investigate if the 11% Support for cancer patients and carers. Background Care of patients with incurable of patients admitted for symptom control Improved knowledge of user requirements illnesses requires comprehensive palliative would be more appropriately managed by PC helps develop good quality information medicine services. Cleveland Clinic Palliative services other than a liaison team, e.g. in resources based on evidence. AIMS: As part of Medicine is a comprehensive service. Services ambulatory care or on a PC inpatient unit. the PIES evaluation, we sought internet usage include 1) an in-patient unit 2) in-patient data from an expert user group of consultation service 3) outpatient clinics and professionals. METHODS: Data gathered Sep consultation service 4) hospice outpatient and in- Abstract number: 148 2002–Sep 2004 using self-complete patient service 5) 24-hour on call and on call Presentation type: Poster questionnaires and semi-structured interviews. telephone services. Palliative services provide 1) Poster number: P38 RESULTS: 93 forms received. 82% female users. continuity of care, 2) rapid access throughout the Nurses form key user group (>45% of sample). illness. We performed a prospective study of AUDIT OF DOCUMENTATION OF 23% ‘very little’ internet experience. 70% had service utilization to help palliative medicine PRESCRIBING IN A HOSPICE used internet for cancer information 3 or more program development. Method Consecutive times. Top 5 information topics sought: 1 patients were followed for service utilization after JOANNE BRADY, PALLIATIVE CARE, LONDON, Treatment Choices (cited by 79%); 2 Side initial consultation. Patient demographics, GREAT BRITAIN, ANNA WILKINS, ST JOSEPHS Effects 76%; 3 Causes of Illness 72%; 4 Illness consult location, and referring service were HOSPICE, LONDON, GREAT BRITAIN Types 65%; 5 Voluntary/self-help groups 62%. recorded. New service utilization was defined as: ` 64% said ‘yes’ they would encourage 1) in-patient admission, 2) hospice admission, 3) Aim: Drug administration is the final step in a patients/carers to use PIES, 2% said ‘no’. 82% in-patient hospice admission, 4) outpatient clinic multidisciplinary process. Clear documentation rated PIES overall good or very good. 75% good

32 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

or very good navigation. 80% good or very Abstract number: 151 collaboratively with a range of community good for finding relevant, reliable information. Presentation type: Poster advisors drawn from voluntary groups 57% said PIES would be quite or very useful in Poster number: P41 representing older people. There are 5 stages to future for finding cancer information. Users the project: 1. Literature review 2. Collection of were split on whether a discussion forum Evaluation of two hospital support teams information resources and their collaborative shared between professionals and consumers regarding different settings evaluation with community advisors 3. would be a good idea (43% yes; 38% not sure; Development of education guides; development 6% no). CONCLUSIONS: Majority of these Johann Baumgartner, Koordination and implementation of a training programme professionals use the internet for information Palliativbetreuung Steiermark, Graz, AUSTRIA, for community advisors who will act as peer on a range of basic care issues. They will Brigitte Wagner, Evaluation institute, Graz, educators. 4. Testing of education guides by recommend some websites to patients and AUSTRIA peer educators within their community groups,

carers. Nurses form a key user group. Since 23% and assessment of their acceptability. 5. APRIL 8 FRIDAY of web-using professionals had ‘very little’ The goal of the current study is to find out the Ongoing evaluation by an independent internet experience, the figure among all focus of activities and the expenditure of time evaluator. Proposed outcomes 1. A useful professionals may be even higher, and this may regarding two different settings of hospital database of resources and materials for public affect how well the web facilitates access to the support teams in Styria. One team is located at education in end of life care. 2. Peer education evidence base. the regular hospital for acute cases in sessions that are acceptable to participants and Rottenmann and the other at a private hospital feasible to run 3. A peer education programme in Graz. In Graz the hospital support team that is acceptable to peer educators and feasible Abstract number: 150 cooperates with the in-house palliative care to deliver. 4. An understanding of preferred Presentation type: Poster unit, so patients can be transferred if necessary, styles of participation in public education about Poster number: P40 whereas in Rottenmann an in-house palliative end of life care. 5. An assessment of subjective care unit is not available and the patients are outcomes associated with peer education in end A review of the practice of opioid rotation treated by the team in course of their whole stay of life care. 6. An assessment of the potential in cancer patients in a palliative care in the hospital. While the patients are being transferability of the model to other contexts. inpatient unit taken care of, data are collected by members of the hospital support teams. Physical and mental Roisin Adams, Our Lady’s Hospice, Dublin, health status of the patients are recorded as well Abstract number: 153 Ireland, Paul Collier, School of Pharmacy as the activities of the hospital support teams. Presentation type: Poster Queens University, Belfast, Northern Ireland At present only interim results are available Poster number: P44 based on a sample of 50 cases. According to our Background and Objectives: There is now a current findings we assume the activities of the The last days of life in progressive disease broad range of strong opioids to choose from hospital support teams are focused on the cancer patients: Different perceptions of each exhibiting differing pharmacodynamic psychosocial domain. On average 100.8 relatives and doctors and pharmacokinetic properties. The minutes (SD=61.6) per patient and visitation are identification of problems such as tolerance and taken for those activities. However, in Susanne Schweitzer, Jena, GERMANY, Birgitt toxicity have led to experimentation with Rottenmann visitations of the hospital support van Oorschot, Modellprojekt Patienten als different opioids from which the practice of team are more often associated with the Partner, Jena, GERMANY, Norbert Köhler, opioid rotation was developed. There are no patient’s physical complaints than in Graz, due Modellprojekt Patienten als Partner, Jena, formal guidelines in place in Our Lady’s to the lack of a pallitive care unit (Graz: 31.0% GERMANY, Karena Leppert, Modellprojekt hospice, Harolds Cross, Dublin for opioid vs. Rottenmann: 66.7%), whereas the team in Patienten als Partner, Jena, Kerstin Steinbach, rotation and therefore this review aims to assess Graz is more frequently consulted solely for its Modellprojekt Patienten als Partner, Jena, the practice of opioid rotation in the in-patient psychosocial activities. In Graz patients are also GERMANY unit and to evaluate the reasons and outcomes more often visited by the hospital support team of the rotation. only once because of the in-house palliative Introduction: An important goal of palliative Methods: Retrospective study examining the care unit (Graz: 40.0% vs. Rottenmann: 28.0%). medicine within the last weeks of life is medical notes of all patients admitted to the in- Further statistical analyses based on a sample of symptom control. However, the perceptions of patient unit in a 6-month period. A pilot study more than 100 cases are planned for the final the last days and of the patients symptoms may was completed following which data was report, which will be available at the end of be differing between professionals and non- collected using a data collection form by one 2004. professionals. Within the project ‘Patients as investigator. Data was collected on the initiating partners’ we did initial interviews with opioid, reasons for changing, adverse effects progressive disease cancer patients (n=272) and and outcomes of the switch. Results were Abstract number: 152 their relatives (n=64); after the patients had died analysed using descriptive statistics. Presentation type: Poster interviews were made with the same relatives Results: 67 out of 81 patients notes were eligible Poster number: P43 (n=19) and the family doctors (n=91). Results: for analysis. 97 rotations took place of which 64 On initial interview, hospital doctors (n= 256) (66%) were drug rotations and 57 (59%) were A peer education service for advance judged the patients actual health status clearly route rotations. The main reasons given for care planning: a development study with better (average 6.29 on an 11 step likert scale) rotation were patient deterioration (36%), older adults than patients themselves (average 5.86) or their toxicity (17%), adverse effects (19%) and poor relatives (average 4.9). Retrospectively, 56% of pain control (14%). The main treatment of Jane Seymour, School of Nursing and the relatives judged the patients general status toxicity is opioid rotation (21%) followed by Midwifery, University of Sheffield, Sheffield, within the last days of life as maximum poor. dose reduction (5%) and rehydration (1%). The GREAT BRITAIN, Caroline Sanders, School of Reasons for this were pain (68%), nausea (21%), outcomes of toxicity treatment showed less Nursing and Midwifery, University of Sheffield, shortness of breath (53%) and confusion (37%). toxicity in 56% and no improvement in 38%, Sheffield, GREAT BRITAIN, Merryn Gott, Only 31% of the family doctors judged the 6% were not recorded. University of Sheffield, Sheffield, GREAT status of the patient as maximum poor within The most common drug before initial rotation BRITAIN, Amanda Clarke, School of Nursing the last days of life. Most doctors (n=74) was morphine. and Midwifery, University of Sheffield, described a complex picture of somatic and Conclusions: Indications for opioid rotation Sheffield, GREAT BRITAIN, Maddie Welton, psychological problems; ‘pain’ (19%) was most given in this study are similar to other opioid Sheffield Teaching Hospitals Trust, Sheffield, commonly stated, as were confusion (7%) and rotation studies. The treatment strategy of GREAT BRITAIN shortness of breath (18%). 1/19 relatives (5,6%) toxicity in the unit does not follow said the patient seriously asked for termination recommended guidelines and in order to This project aims to develop, implement and of life. One doctor (0,4%) said that a patient achieve the best possible symptom control in evaluate a means of raising awareness of issues asked for termination (not referring to the same these patients, opioids should only be rotated in advance end of life planning among older patient); 15 (16,5%) of the family doctors did when the other clinical strategies (dose adults living in the community. Objectives 1. To not know about. Conclusions: It is known that reduction and rehydration) have been develop a model of peer education to enable patients, relatives and doctors judge symptoms attempted. older adults to: 1) access information about care and health status differently. With regard to and treatment options in end of life care, and 2) relatives, these differing perceptions are also to exchange expertise about approaches to imminent in the last days of life. Besides discussing these issues with their families and professional symptom control it is important to health professionals. 2. To assess the feasibility early communicate about death and symptoms and acceptability of the model as a means of to avoid misunderstandings, frustration and the public education in end of life care for older call for termination of life. adults. Method This is a pilot study in progress in one locality in the UK. Using an action research approach, we are working

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 33 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 154 illness these discussions were taking place. Abstract number: 157 Presentation type: Poster Method and Results A questionnaire was sent to Presentation type: Poster Poster number: P45 all Consultant Neurologists at the regional Poster number: P48 tertiary referral centre for Neurology and Should the DoH ‘Copying letters to Neurosurgery. They were asked to indicate when THE COMMUNICATION DURING Patients’ Initiative be extended to they would discuss certain topics with patients, TERMINAL ILLNESS: VOLUNTEERS Voluntary Palliative Care Settings? ranging from ‘at suspicion of diagnosis’ to ‘at SPEAK OUT point of general deterioration’. The topics Philip Lomax, Institute for Learning & included prognosis, wishes regarding artificial EMANUELA PORTA, Quality Project, MILAN, Development, Cheshire, GREAT BRITAIN, feeding and ventilation, and fears of death. A ITALY, ROBERTA BRUGNOLI, VIDAS, MILAN, Michael Bassett, University of Manchester, 71% response rate was achieved. Many ITALY, GIORGIO D’AMICO, VIDAS, MILAN, Manchester, GREAT BRITAIN, Alison Parr, respondents stressed that information giving ITALY, CARLA BESOZZI, VIDAS, MILAN, ITALY Bolton Hospice/Hospital, Bolton, GREAT was customised to meet the individual patient’s BRITAIN, Dai Roberts, St. Ann’s Hospice, needs. Importantly, many issues such as wishes BACKGROUND The End of care Form was Manchester, GREAT BRITAIN regarding ventilation were either not routinely drawn up in the year 2000 by a group of VIDAS discussed with patients, or only discussed at the volunteers to detail home activity. METHODS The aim of the study was to assess the potential point of deteriorating respiratory function. and tools Form divided into 7 areas, with 53 value of copying ‘letters between doctors’ to Conclusion This information has helped us to multiple choice questions, to complete by each their patients, in a voluntary hospice palliative develop a policy, whereby all MND patients volunteer as he finishes assisting a patient. care setting. In 2000 the UK’s Department of accessing specialist palliative care have the RESULTS (sample of patients 1/2000–7/2004). Health (DoH) published The NHS Plan which opportunity to discuss their fears for the future 847 anonymous Forms: 506 men, 341 women, stated that ‘Patients have the right to see their and plan their care in advance. aged: 70–80 years. Areas investigated: medical records, though in practice Relationship with volunteer 70% of patients communication between professionals is not and 77% of families understood volunteer’s available to the patient concerned. Patients Abstract number: 156 role. Only 11% of volunteers have any problems often do not know why they are being referred, Presentation type: Poster regarding relationship with patients and or what is being said about them. In future Poster number: P47 families. COMMUNICATION was volunteer letters between clinicians about an individual predominant activity: 57% with patient, 44% patient’s care will be copied to the patient as of Do patients with incurable cancer feel with relatives. Type of communication Initial right’.1 In 2001 the DoH pilot initiative for sufficiently informed about disease- willingness of patient to communicate: copying patient letters was commenced. related topics? complete 65%, on and off 25%, absent 10%; Perceived benefits include an improvement in with the following ability at 1st visit: 62% patient’s understanding of their condition, Elsbeth Voogt, Department of Public Health, normal communication, 30% difficult or allowing for more informed decision making Rotterdam, NETHERLANDS, Anna F. Van fragmentary communication and in 8% this and improved doctor–patient communication.2 Leeuwen, Erasmus MC, Dept Public Health, ability was absent. Mode of communication Bi- A questionnaire survey was conducted by an Rotterdam, NETHERLANDS, Adriaan P. Visser, directional in 76% of cases. 85% of patients did independent researcher, in a 66 bedded adult Helen Dowling Institute, Utrecht, not ask direct questions about their state of hospice to ascertain the opinions of both NETHERLANDS, Agnes Van der Heide, Erasmus health. Topics covered With patient: 30% palliative care patients and doctors to the value MC, Dept Public Health, Rotterdam, concerned his life, 23% his state of health, 23% of adopting the DoH ‘copying patient letters’ NETHERLANDS, Paul J. Van der Maas, Erasmus the family, 11% current events, 13% other initiative. Upon recruitment to the study, MC, Dept Public Health, Rotterdam, topics. Discussions concerning ‘death’: in 10% patient participants were shown a ‘sample’ NETHERLANDS of cases, in 23% just oblique references to it. letter to raise their awareness of the issue, prior With relatives: 49% concerned patient’s state of to completion of the questionnaire. Results Most cancer patients appreciate to be fully health, 7% relative’s health, 30% organizational demonstrated that 94% of palliative care informed about their disease. We studied to problems, 3% financial problems, 11% other patients (n=63) would want to receive copies of what extent cancer patients report to have been topics. CONCLUSIONS Processing of first 847 letters, from which 78% would not wish any informed about disease-related subjects in the Forms confirmed that, despite difficulties owing adaptation of language or content from the last phase of life. Hundred-and-twenty-eight to the patient’s state of health, volunteer original. Hospice doctors (n=11) also viewed the patients suffering from breast, lung, colorectal, established a satisfactory level of initiative positively. Almost all patients surveyed prostate, or ovary cancer were included within communication, concerning mostly the attending hospice would wish to receive copies two months of being informed that their cancer personal sphere, thanks to the close of letters. We recommend that the DoH was in principle incurable. They filled out a relationship he generally promotes, often ‘copying letters initiative’ should be extended to questionnaire and were interviewed personally. becoming the favourite confidante of the hospice/palliative care settings and will discuss The majority of the patients were informed patient/family both the findings of the study and implications about treatment options and side effects, for the introduction of the initiative in the physical symptoms, where to get help, helpful hospice setting. devices, and diet, while less than half of the Abstract number: 158 patients were informed about psychosocial care, Presentation type: Poster References euthanasia, and complementary care. Of all Poster number: P49 1. Department of Health. (2000) The NHS Plan. London: patients, 39% would have appreciated Stationery Office. additional information. Topics mentioned DISCLOSURE OF CANCER DIAGNOSIS 2.Saunders, Georgalas et al. (2003) J Laryngol otol. 117: 126–129 included physical symptoms, diet, euthanasia, AND PROGNOSIS AMONG THE and alternative or complementary care. ITALIAN CANCER PATIENTS. RESULTS Nineteen percent would have appreciated extra FROM AN ITALIAN MORTALITY Abstract number: 155 written information. Most patients (78%–88%) FOLLOW-BACK SURVEY Presentation type: Poster were satisfied with the information giving by Poster number: P46 the clinical specialist, oncology nurses, and Massimo Costantini, Unit of Clinical non-specialised nurses, but only 63% evaluated Epidemiology, Genova, ITALY, Morasso To boldly go: Communication challenges the information giving by general practitioners Gabriella, National Cancer Institute, Genova, in Motor Neurone Disease as good. Most patients feel sufficiently informed ITALY, Beccaro Monica, National Cancer about several important disease-specific issues Institute, Genova, ITALY, Montella Maurizio, Karen Groves, WL, S&F Palliative Care Services, and are satisfied with the information giving by National Cancer Institute, Napoli, ITALY, Di Leo Southport, GREAT BRITAIN, Laura Chapman, their health care professionals. Nevertheless, a Silvia, National Cancer Institute, Genova, ITALY West Lancs, Southport & Formby Palliative Care considerable number of patients would like to Services, Southport, Merseyside, GREAT receive additional information about a varying STUDY OBJECTIVE: This study was aimed at BRITAIN list of topics. Open communication between estimating the proportion of Italian patients health care professionals and patients is deceased for cancer who had received Patients with Motor Neurone Disease (MND) important to address this need. information about diagnosis and prognosis and are increasingly being cared for by specialists in their determinants. METHODS: this is mortality palliative care at some stage in their illness. The follow-back survey of 2,000 adults cancer deaths majority will also continue to be reviewed by a identified with a 2-stage probability sample neurologist. Aim: In order to improve our representative of the whole country. practice and promote collaborative working in Information on patients’ experience was communication with patients and their gathered from the non-professional caregiver families, we set up a study to look at the with an interview conducted by trained information being given to MND patients by professionals. A schedule covered questions on their neurologists, and at what stage of the the disclosure of diagnosis and prognosis to the

34 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

patients. RESULTS. Valid interviews were necessary. There is a need for an improved consensus from experts themselves. In this study, obtained for 63.5% (n=1,271) of the theoretical establishment of palliative care teams to help OTs who work with PWLTI was employed all sample. Only 38.8% (95% CI=35.9–41.6) of the GP’s deal with complex medical problems, accessed through COT’s clinical interest group, patients deceased for cancer had received co-ordination, and psychosocial issues. H.O.P.E. This study has investigated the skills information on the nature of illness before core of OT practice with PWLTI. Furthermore, it death. Among the informed subgroup, patients identifies whether these skills vary across level of had received information on diagnosis by a Abstract number: 160 experience and work environment. Permission to physician (79.7%), another health professional Presentation type: Poster carry out the study was obtained. Ninety-four out (0.6%), or a relative (14.7%). A small by Poster number: P51 of 195 respondents completed the on-line survey. significant group (5.0%) sought information by SPSS version 11.5 was used to analyse themselves. The caregivers reported that 52% of COMMUNICATION OF AN ONCOLOGICAL quantitative data and ATLAS/ti software was

the non-informed patients were aware of the DIAGNOSIS: A PATIENTS’ NEED BUT A utilised to analyse qualitative feedback. OTs have APRIL 8 FRIDAY nature of their illness. Disclosure of cancer DOCTORS’ PROBLEM come up to the consensus of the skills core to diagnosis was significantly associated with a their practice with PWLTI in areas/use of models younger age and a high education level of the Serena Zuliani, Ospedale Civile Maggiore Bgo of practice, assessment, treatment, supervision patient, with some cancers (head and neck, skin Trento, Verona, ITALY, Pietro Manno, and continuing professional development. and breast), and for diseases with a longer Oncologia Medica, Verona, ITALY, Antonio Association of skills across level of experience interval between diagnosis and death. Only Santo, Oncologia Medica, Verona, ITALY, and work environment revealed interesting 13.4% of the patients (95% CI=7.5–19.2) Teodoro Sava, Oncologia Medica, Verona, results. Additionally, qualitative feedback received information about the bad prognosis ITALY, Gian Luigi Cetto, Oncologia Medica, provided remarkable topics for debate. The study of disease. The caregivers reported that 63% of Verona, ITALY has implications to link educational the patients non-informed on prognosis were establishment/s and clinical practice setting/s in aware of bad prognosis the illness. Introduction: the communication of bad news preparing OT’s of ‘beyond’ within the field of CONCLUSIONS: Although different patterns in is difficult in an oncologic setting. Today it has palliative care with skills needed to be an attitudes of physicians in the process of been observed a trend to communicate the effective OT practitioner/s. Future research disclosure of cancer diagnosis and prognosis are truth to the oncologic patient. Several studies should consider respondents’ Internet reported in different countries, this high have analized the communication, few the knowledge involving on-line surveys and proportion of non-informed cancer patients in degree of awareness regarding the disease. increase number of samples are needed to make Italy is unexpected. This situation should be Patients and Methods: we given out a the consensus more representative of the OT considered as a public health emergency and questionnaire which is composed of two parts, population among PWLTI in the United coherently faced up by health administrators. one for the doctor and the other for the patient. Kingdom. We evaluated the doctor’s ability to communicate about the diagnosis and Abstract number: 159 prognosis througth the analysis of patients’ Abstract number: 162 Presentation type: Poster understanding about diagnosis and prognosis. Presentation type: Poster Poster number: P50 So we analyzed how this ability change Poster number: P53 according to pts’ prognosis. We evaluated 137 The family doctor in charge of dying pts (53 males and 84 females) aged from 30 to Evidence-based integration of relatives cancer patients – How succeeds 60 years and an mean-high school education communication, participation and from March ’00 to October ’00. The most Wolfgang George, Gesellschaft zur Integration consideration of individual preferences? frequent tumors were: breast, colon-rectus, lung von Angehörigen, Giessen, GERMANY and kidney cancer; good prognosis 70% and Kerstin Steinbach Jena, GERMANY, Birgitt van poor 30%. Results: the doctor communicates Current situation: In spite of different efforts Oorschot, University of Jena, Department of completely the diagnosis (95%) and the and undoubted successful projects and radiotherapie, Jena, GERMANY, Susanne prognosis (85%) when the prognosis is researches, the relative-integration still needs an Schweitzer, Helios Hospital Bad Berka, exspected to be good, these percentages improvement. Particularly there is a lack in the Department of radiology, Jena, GERMANY, decreased to 76% and 12% respectively when application of instruments which produce an Karena Leppert, University of Jena, Department the prognosis is poor. Independently of real valid, evidence based and practicable set of of Medical psychiology, Jena, GERMANY, Reiner prognosis doctors communicate: recovery information to monitor and manage this Anselm, University of Göttingen, Department of (92%), disease improvement (12%), disease process. Targets To develop a valid and Theology, Göttingen, GERMANY stabilisation (8%), symptoms control (0%), so impressive Standard Operation Procedure by 93 pts (68%) expect a disease recovery. 128 pts using a new relative assessment based on the Introduction: The general practitioner (GP) (94%) believe they understand the diagnosis, standard of the evidence-based-method. plays an important role in the medical and only 88 (64%) are able to define their disease Method: The new developed ‘Relative- psychosocial care in the palliative situation. An (54% bad prognosis, 69% good prognosis). 128 Assessment’ includes 40 Items, belonging to 6 essential tool for a successful caretaking is a pts (94%) want to be informed about the Dimensions: Experience and Confidence, clear perception and best possible realisation of disease, 108 (79%) about the prognosis, and 104 Knowledge, Necessary Skills, Participation and patients preferences and moral concept. Within (77%) even if is expected to be poor. Expert, Resources and Fitness. Utilising this the project ‘Patients as partners’ we were Conclusion: a proper communication regarding bride screening, the users get a sufficient interested in how GP´s could realise patients diagnosis and prognosis depend on disease overview about that relevant health topics and wishes of participation and individual stage and prognosis. Doctors have difficulties to their individual tension. This knowledge is preferences at the end of life. Method: We communicate the exact evolution of the necessary to realise the intended short term interviewed patients (n=272) with progressive disease. The most of patients would like to be impacts as well, as to manage and monitor the malignancies with a standardised questionnaire. informed independently from prognosis. long term ones. The dimension ‘Necessary After the patients had died interviews were Skills’ will be customized to the specific tasks made with the GP´s (n=91). Results: Every and targets of the users needs. The translation second GP had let his patient influence the Abstract number: 161 of evidence-based working method to the treatment to a high degree. 34% GP´s said that Presentation type: Poster integration of relative means: to identify the the patient made the last treatment decision Poster number: P52 valid requirement, research the valid studies, alone, 38% shared the decision and in 28% of qualify the best practice and evaluate the own the cases the GP himself made all decisions. On-line survey of Occupational doing. Therefore it is easy to use the targets / Nearly 90% of the GP´s described their relation Therapist’s core skills who works with programs of independent best-practice to the patient as a partnership. Consultation, people who have life threatening illnesses healthorganisations. Results: The first clinical care and tolerance were regarded as the main in the UK researches (n = 200) had been realised in features of partnership. One in two doctors hospital- and care-settings. The results of a refrained from medical procedures in the last Joseph Baylon, Occupational Therapy factor analysis confirm the chosen days of life. An advanced directive from the Department, Berkshire, UK construction. The description of the spot-check patient was available in 6/91 cases and had group combined with the principles of ebm- practical consequences in 3 cases. One GP was Core skills published by the College of requirements produces new information to asked for assisted suicide. 58% of all patients Occupational Therapy (COT, 2003) may not build up strategies, performances and services. died, not always according to their wish, at the necessarily be the core skills of Occupational After the methodological development the hospital and 32% died at home. Discussion: For Therapists working with people who have life- Relative-Assessment is a short and cost-saving the GP’s the extensive end of life care is a great threatening illnesses (PWLTI). Likewise, skills instrument to: integrate the relatives more challenge. To allow a patient-centred and taught in the academic field does not hugely effectively empower of the patients, manage the preference-orientated dying in dignity a reflect the existing realities of clinical practice. providing process by less cost, rise the quality of trouble-free co-operation between specialists, The best manner to explore the skills core of OT life of the patient and relatives and discharge professional carers and patients family is practice among PWLTI is to gather professional the professional team.

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 35 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 163 and Housing, Legal issues, Child provision. website should be based on the concepts of Presentation type: Poster Carer advisors used checklists to record details adult learning needs and it should be designed Poster number: P54 of domains covered at each visit. Weekly in a way that the learner can use the clinical supervisions with research team were information in his or her clinical work without Supporting people with intellectual held to discuss issues arising. Results: Our trial further input. disabilities through terminal illness: suggests that increased support for carers A distance learning workbook for alleviates distress and that such input could be paid carers maintained throughout care rather than Abstract number: 167 delivered as a brief intervention. Conclusions: Presentation type: Poster Irene Tuffrey-Wijne, Mental Health (Learning Increased awareness amongst palliative care Poster number: P58 Disability), London, GREAT BRITAIN team members might be facilitated by use of the Carer Advisor Skills Awareness Handbook as Education beyond the borders, a website Aim: To describe an effective distance learning a basis for in-service education sessions. Key teaching about symptom management. course about palliative care for paid carers in elements of this intervention could be intellectual disability services. As more people incorporated into routine care. Marianne Klee, Vaerlose, DENMARK with intellectual disabilities are now dying of age-related illnesses such as cancer, the The website www.symptomscontrol.com is a provision of high quality end-of-life care gains Abstract number: 165 clinical website that teaches all doctors and increasing importance. However, there is a lack Presentation type: Poster nurses working with seriously ill and dying of educational materials for carers in Poster number: P56 patients, how to diagnose and treat the patients’ intellectual disability services about palliative symptoms. The aim is to teach the basic skills of care. UK national guidelines stipulate that such Undergraduate palliative care medical how to manage physical and psychological materials should be available and accredited. education – how effective is it? symptoms. It is designed to meet the needs of Method: An experienced palliative care nurse postgraduate learners. It can be used as a and intellectual disability nurse produced an Paul Paes, Palliative Medicine, Oxford, GREAT manual, as a set of guidelines and as a textbook. extensive and unique interactive workbook, BRITAIN, Amanda Taylor, Kettering General It is constructed as ‘a clinical teacher on the net’ aimed at inexperienced paid carers. The Hospital, Kettering, GREAT BRITAIN with the emphasis on ‘how to do it’. It is written contents, including the activities, were trialled in English and is designed to be internationally. with groups of carers. The book was published Background: There is increasing emphasis on The graphics has been created for the site and it and the course delivered by the British Institute palliative care training within the medical will later be possible to download these for for Learning Disabilities. A poster will present school curriculum. There has been little teaching purposes. Later on more examples fom the workbook, together with research on the effectiveness of this teaching. comprehensive e-learning will be developed comments from users. Results: The workbook is This study seeks to explore how effective the allowing health care professionals to get a more of benefit both to students seeking teaching is in one area of palliative care, pain systematic training and documentation for this. accreditation, and to intellectual disabilitiy control. Method: Pre-registration house officers services looking for relevant, focused learning (PRHOs) completed a questionnaire at the start opportunities. Conclusion: Focused, accessible of their jobs. The questionnaire contained 4 Abstract number: 168 materials relating to pallaitive care are questions exploring concepts of pain Presentation type: Poster important for inexperiences carers, and management and 2 questions testing practical Poster number: P59 professionals. knowledge of pain management. Results: 15 PRHOs participated. The majority had a good Beyond the borders of traditional understanding of pain concepts including the teaching, using a website to spread Abstract number: 164 WHO analgesic ladder, side-effects of opioids, the information Presentation type: Poster treatment of neuropathic pain, and non-drug Poster number: P55 treatments of pain. Very few were able to answer Marianne Klee, Vaerlose, DENMARK the questions testing their practical knowledge. CARER ADVISORS IN PALLIATIVE CARE: Discussion: PRHOs had a good understanding Palliative care is faced with a big challenge: DESCRIPTION OF AN INTERVENTION of concepts of pain management from their Most health care professionals that are currently undergraduate training. They were less good at practicing have not had any training in basic Louise JONES, Mental Health Science, London, practical prescribing of analgesia. To overcome palliative care. This means that they do not GREAT BRITAIN, Christina MASON, St Josephs this, palliative care teams need to develop have any structured knowledge about the Hospice Hackney, London, GREAT BRITAIN, Kri educational programmes to help junior doctors management of symptoms nor how to address Walsh, Royal Free And University College put their theoretical knowledge into practice. the patients’ psychosocial needs. The internet is Medical School, London, GREAT BRITAIN, becoming an important tool in the Adrian Tookman, Royal Free Hospital NHS postgraduate teaching and in the area of Trust, London, GREAT BRITAIN, Michael King, Abstract number: 166 palliative care a number of websites have been Royal Free And University College Medical Presentation type: Poster developed. An overview of the best websites School, London, GREAT BRITAIN Poster number: P57 (written in English) informing and teaching about palliative care will be given, including Background: We conducted a randomized Education beyond the borders of their addresses and content. controlled trial of a brief intervention to reduce palliative care. distress in carers of patients receiving specialist palliative care in north London (funded by Marianne Klee, Vaerloese, DENMARK Abstract number: 169 Cancer Research UK, 2000–2003). Results Presentation type: Poster showed the intervention produced a significant One of the biggest challenges facing palliative Poster number: P60 reduction in distress which was not sustained care in the coming years is how to ‘spread the when the intervention was withdrawn. In this word’. All doctors and nurses who work with The obstacles in group dynamics in presentation we describe the format of the somatic patients should have a basic knowledge healthcare service. The importance of intervention. Aims: To describe the training of about how to manage symptoms and address having an external psychological advisors and implementation of a carer focused psychosocial issues. There are a number of supervisor in P.C. teams intervention. Methods: Two advisors were issues that have to be considered: 1. Most health recruited to implement the intervention which care professionals have no formal training in Gustavo F. Rodio, Psychosocial Area, Capital consisted of 6 weekly visits to carers by advisors. palliative care. 2. Many health care Federal – Buenos Aires, ARGENTINA, Marcelo Advisors received training from physicians, professionals ‘do not know what they do not Medylewsky, Hospice San Camilo, Olivos, nurses and psychosocial team members as know’ so they do not seek the information. 3. ARGENTINA, Dora Gonzalez, Hospital Ganulfo, outlined in the Skills Awareness Handbook. The When a palliative care facility does exist it tends Lomas de Zamora, ARGENTINA, Gabriela Boso, principal domains covered were: Carer fatigue to take over the patient instead of transferring Hospital Churruca – Visca, Buenos Aires, (Health needs of carer, Practical needs, Respite knowledge by teaching. 4. Health care ARGENTINA, Ana Ottonello, Hospital Marie care, Support from Social Services); Emotional professionals have many duties and may not be Currie, Buenos Aires, ARGENTINA support for carer (Social networks, Dynamics of able to find time to attend lectures and other family relationships, Sexuality in carer and traditional teaching. 5. Any teaching should be Taking care of professionals that make up a patient, Management of children where based on the concept of adult learning. 6. Most treating team asks for specific and accurate relevant); Practical issues in total care of the specialists in palliative care spend the majority intervention within the context of P.C. Clinical patient (Symptom management, Handling of their time on clinical work and little on supervision may play an important part in management/ Sliding & gliding, Feeding and postgraduate teaching. One of the solutions is preventing dysfunctions in group dynamics and diet, Complementary therapies, Sleeping and the development of a website teaching the basic habitual syndromes related to this kind of task bedrest, Crises management); Finance, Benefits clinical skills of palliative medicine. This (such as burn out). This oral presentation seeks

36 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

to: – Reflect on the importance of self-care. – Abstract number: 171 Philosophy and principles of palliative care; Enrich intervention and promote proactive Presentation type: Poster Counselling skills and therapeutic communication, as opposed to reactive Poster number: P62 communication; Symptom control and communication. – Understand invisible management of care; Understanding feelings – patterns and also transference – counter- Family physicians’ knowledge about pain bereavement and loss. The education was transference connections in professional – control in Poland provided and took place at various sites patient/family and professional – professional throughout the Network including St Josephs relationships. – Teach how to tolerate tension in Krzysztof Buczkowski, Family Medicine, Hospice in Hackney. At St. Joseph’s, the conflicts, so as not to fall into judgments of the Bydgoszcz, POLAND, Malgorzata Krajnik, education sessions used various teaching ‘this is good / or this is bad’ type. – Reveal Medical Academy, Bydgoszcz, POLAND, Jacek strategies provided by the multi-professional attitudes and reactions that facilitate the Budzynski, Medical Academy, Bydgoszcz, Community Palliative Care, the Pastoral Team,

professional/patient/family relationship – Share POLAND, Slawomir Chlabicz, Medical education specialists and external speakers. APRIL 8 FRIDAY experiences and testimonies. Academy, Bialystok, POLAND Overall, the targets were met and across the Network over 348 nurses undertook the The well-organized palliative care should training. Detailed evaluations indicated that the Abstract number: 170 involve partcipation of family physicians in the course was well received and enjoyed. A sense of Presentation type: Poster management of end-of-life symptoms. Their achievement amongst the teaching group in Poster number: P61 knowledge about symptom control is essential providing education to community staff and for providing competent service. The basic is a relating theory to practice was fundamental to Assessment of an innovative competency proper diagnosis and treating of pain. The aim the course. The project has finished. The based palliative care teaching programme of this study was to assess family physicians course, expanded to include health knowledge about pain control. Method: A professionals, continues to run. Details of its Jason Ward, Medical, Pontefract, GREAT postal questionnaire surveyed a sample of 384 content and evaluation will be included in the BRITAIN, Suzanne Kite, Leeds Teaching Polish family physicians. The response rate was presentation. Hospitals HNS Trust, Leeds, GREAT BRITAIN 51%. The questionnaire consisted of clinical cases connected with pain control. Results: All Aim: Assessment was included in a new cases were divided into three groups according Abstract number: 173 competency based teaching programme for to percentage of correct answers. The first group Presentation type: Poster Senior House Officers (SHO) at a regional with the highest percentage of correct answers – Poster number: P64 radiotherapy centre to evaluate the programme areas of strength (more than 50%), the second Method: No validated tools for the assessment between 33% and 50%, and the third with An evaluation of a bespoke training of junior doctor’s palliative medicine percentage of correct answers lower than 33% – programme for f grades in specialist knowledge or attitudes were identified. A 20- areas of weakness. Strengths in physicians’ palliative care point palliative care knowledge quiz validated knowledge include neuropathic pain for nurses was modified (Ross 1996). A self- characteristic, usage of standard-release Elaine Lennan, Cancer Care Directorate, rating confidence and coping-style morphine in the management of breakthrough Southampton, GREAT BRITAIN questionnaire used amongst general pain and conversion of oral to subcutaneous practitioners before and after a palliative care opioids. The second group included drugs used A bespoke training programme was developed workshop was extended with questions specific in the management of neuropathic pain, for f grades in specialist palliative care in to the programme (Macleod 1994). The dealing with constipation and nausea caused by response to an inability to fill clinical nurse questionnaires were given to two groups of opioids. The areas of weakness were formed by specialist positions. There were many reasons eight SHOs at the start and end of the management of bone metastases pain and the for these vacancies going unfilled but a clear programme in addition to a free text evaluation reason for not increasing the dosage of opioids problem was a lack of confidence to take the form. Results: Completion rates were low in a patient with cancer pain. No participant leap of faith into the specialist role and / or the despite verbal and written reminders: Pre- was afraid of drug addiction during opioid lack of core skills to take on the role.With this programme 13/18 (72%) and post programme therapy. Conclusion: The knowledge of family in mind we developed a rotational programme 6/18 (33%). Reasons will be discussed. Palliative phisicians in Poland about pain control is for 3 f grade nurse to have the opportunity to Care Knowledge Quiz: Mean score improved insufficient and worse than in other countries. work in the hospital palliative care team, the from 11.8 to 14.2 (maximum 17). Specific This situation demands improvement. home care team and the in patient unit in a improvements in symptom control (73% pre, References supernummary capacity. Alongside this clinical 81% post), philosophy of palliative care (62% Levin ML, Berry JL, Leiter J. Management of Pain in experience we offered support for academic pre, 79% post) and psychosocial/spiritual (67% Terminally Ill Patients: Physician Reports of Knowledge, work with a protected study day each week. No pre, 92% post). Confidence/Coping Attitudes and Behavior. Journal of Pain and Symptom job descriptions were available as we felt it Questionnaire: Increased confidence managing Management 1998;15:27–40. Barclay S, Todd C, Grande G, important to meet individual needs whilst on Lipscombe J. Controlling Cancer Pain in Primary Care: The physical symptoms, psychosocial problems and Prescribing Habits and Knowledge Base of General this development programme. Instead an discharge planning. Increased coping Practitioners. Journal of Pain and Symptom Management individual personal development plan was mechanisms for dealing with dying patients. 2002;23(5):383–392. created with the help of a mentor. This was Free Text Evaluation: Case based/problem done using the RCN Clinical Competancies for solving approach highly valued, integrating all nurses working in specialist palliative care aspects of care. Informal atmosphere promoted Abstract number: 172 (2002). In addition to clinical and academic discussion of difficult issues. Questionnaire Presentation type: Poster exposure we felt it important to ensure the problems: Some questions were ambiguous, too Poster number: P63 individuals were part of a group and not specialist, not relevant or were poor isolated. This was acheived in 2 ways Firstly a discriminators. A limited range of topics, second monthly needs led workshops predominantly pain, assessed. Some SHOs Palliative Care Education and addressing issues the participants had raised unable to complete a VAS. Conclusion: The Support Programme for Community and and secondly a monthly formal clinical programme was well-received and resulted in District Nurses supervision. To date 2 evaluations are complete increased knowledge, confidence and coping. with the third and final one due in January However, the questionnaires are not sufficiently Tracy Cunningham, Community Palliative Care 2005. Results are encouraging though not all sensitive or specific for use amongst junior Team, London, GREAT BRITAIN positive. Full analysis will be described in the doctors. Further work is underway to establish poster. the validity and reliability of an assessment Many people express a wish to die at home but tool. this does not always happen. In 2001 the Department of Health provided training money to build on and develop the existing palliative care knowledge and skills of Community Nurses in order for them to support carers and patients with palliative care needs dying at home and prevent hospital admissions. The North East London Cancer Network (NELCN) met with education providers and district nurse operational leads in order to plan and develop the project. The project aimed to provide education to three hundred nurses over three years. The course lasts for four and a half days and has been running twice a year. The course incorporated the following components:

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 37 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 174 session was held on 2nd September 2004 in the Abstract number: 177 Presentation type: Poster new Hospice building. A register of attendees Presentation type: Poster Poster number: P65 was taken on the day and certificates of Poster number: P68 attendance were posted following the session. Role models and moral attitude in The GPs were asked to complete an evaluation International Education at St. palliative care form before they left. The uptake of the first Christopher’s Hospice – Spanish Day teaching session was disappointment although Gert Olthuis, 232 Ethics, Philosophy And feedback from the session was encouraging, Maria Teresa Garcia-Baquero Merino, Palliative History Of Medicine, Nijmegen, with future teaching sessions adjusted to Medicine, London, GREAT BRITAIN NETHERLANDS, Wim Dekkers, UMC St accommodate the comments received. In St. Christopher’s Hospice in South East London Radboud, Nijmegen, NETHERLANDS addition to the teaching programme, the GPs is an important centre for education in had an opportunity to view the new Hospice palliative care and people come from all over a) Object of study Our previous research into building. The post-session evaluations show the world to attend teaching sessions there. For the moral attitude of palliative care that our programme is on target to address the a number of years education sessions professionals established that the motivation GPs declared educational needs and the specifically for French speakers have been held and intention to provide end-of-life care programme of sessions for the future is also at St. Christopher’s. Three years ago it was depends on two features: characteristics of appropriate. The doctors seemed particularly decided to hold an annual conference for professionals and the attractiveness of providing keen to have a more practice outlook of Spanish speakers. The first 2 of these were in palliative care. The study suggested several clues palliative care. GP workload constraints are an September 2002 and February 2004. The for developing moral attitude. One of them is obstacle to attendance. Continuous monitoring objectives of this educational event were as using role models. Recently however, the of evaluations by attendees should within a follows: Ø To offer an overview of Hospice care usefulness of role models has been criticized. number of cycles optimise the programme. for Spanish speakers in their own language. Ø Aim of the present study is to investigate if and To discover how the Hospice movement has how role models should play a part in the developed from St. Christopher’s Ø To enable education of moral attitude in palliative care. b) Abstract number: 176 participants to glimpse Specialist Palliative Care Methods 1) 19 Semi-structured interviews with Presentation type: Poster in a modern Hospice. Information about the palliative care professionals. 2) Reviewing Poster number: P67 conference was sent to addresses in the Spanish relevant literature on role models, moral Directory of Palliative Care and also distributed education and virtue ethics. c) Results Moral Why Do Junior Doctors Need an at stands in other conferences. The programme attitude lies at the heart of professional practice: Educational Supervisor? was designed to address specific learning issues the manner in which practitioners perform the using Spanish speakers working in the United roles and tasks of their profession in Maria Teresa Garcia-Baquero Merino, Palliative Kingdom. Participants were asked to complete a conjunction with their patients. Four terms Medicine, London, GREAT BRITAIN, Richard form of evaluation at the end of the 2 days and which make up the pivot of professional Hillier, St. Joseph’s Hospice, London, GREAT this helped with the next year’s programme practice – doing, knowing, being, becoming – BRITAIN planning. The uptake of the invitation to attend served as a guide for the analysis of moral was good. The initial plan had been for a singe attitude in palliative care. Since the aim was to All junior doctors at St Joseph’s Hospice receive day conference. At the request of the study education of moral attitude, attention was regular clinical supervision and also attend a participants it has grown to a 2-day event. The focused on ‘becoming’. In the literature some support group enabling them to process their conferences were very well evaluated. claim that role models may be an unreliable work emotionally. In addition, during the year Participants wanted even more than 2 day’s way to teach values, attitudes and behaviour. the doctors have received educational time and the opportunity for more in-depth However, from a virtue ethical perspective it is supervision by somebody who did not work topic teaching. Another aspect that was argued that the apparent importance of clinically with them. We wanted to introduce appreciated was the variety of teaching input experiential learning and reflection in the doctors to the idea of reflective practice and and content. The experience of the past 3 years ‘becoming’ indicates that role models to provide support, not only professionally but has indicated an on-going need for further inevitably play a part in developing a moral also personally. A survey was undertaken to “Spanish days” and these will continue to be attitude. We propose two possibilities to steer assess the perceived value of this one-to-one arranged and evaluated. The next is planned for education of moral attitude on the basis of role educational supervision. The survey was 25th–26th February 2005. Overseas Spanish models in the right direction. d) Conclusion intended to assess the level of confidence as a speaking professionals appreciate the Students and novice professionals should be result of the sessions and to evaluate this in opportunity to have these days in a Hospice in trained to better recognize ‘excellence’ in relation to the doctors’ work in the multi- addition to teaching on topics relating to palliative care practice. Two modes are professional team. We also wanted to explore palliative care. proposed: the use of medical humanities and a the impact of these sessions on the individual’s combination of gaining experience in practice career planning. An 8-item questionnaire was and reflection. developed and distributed to the 7 junior Abstract number: 178 doctors. An appropriate timescale was given for Presentation type: Poster the return of the completed questionnaires and Poster number: P69 Abstract number: 175 all 7 replied. From the returned questionnaires, Presentation type: Poster it was found that there was a clear preference to Beyond the Border. Taking Palliative Care Poster number: P66 have these educational sessions at a higher training to the wider community frequency. All junior doctors either completely What Do GPs Want From Their local agreed or agreed that the objective of these Frances Kraus, Candle Project, London, GREAT Hospice in Terms of Education? sessions had been achieved. Most doctors felt BRITAIN, David Oliviere, St Christopher’s the need to elaborate further – with very Hospice, London, GREAT BRITAIN Maria Teresa Garcia-Baquero Merino, Palliative positive comments – in the “Additional Medicine, London, GREAT BRITAIN, Deborah Comments” section. We conclude that This project has involved St Christopher’s Hammond, St. Joseph’s Hospice, London, educational supervision, when undertaken by a Hospice Candle project in a major training GREAT BRITAIN, Ruth Silverman, St. Joseph’s senior doctor not involved in clinical practice, is initiative with the London Metropolitan Police Hospice, London, GREAT BRITAIN a valuable experience. Educational supervision since 2000. When a sudden death such as a doesn’t clash with day-to-day supervision of homicide, suicide or road traffic accident occurs We decided to make contact with general clinical practice. It complements and adds to it. and the police are involved, a police Family practitioners and to begin an education Nor would it appear from the responses does Liaison Officer is assigned to work with the programme for them about Hospice and educational supervision interfere with the family until the case is resolved or closed. These palliative care. A questionnaire was developed effectiveness of the support group where the officers did not receive any specialist training and disturbed to the local GPs in 3 boroughs junior doctors felt their individual needs were until a Public Inquiry by Lord Macpherson in and this was sent with a covering letter to dealt with. 1999 following a high profile unsolved murder explain how and why the Hospice was setting case reported that their care for bereaved up the education sessions. A stamped addressed families was inadequate and needed attention. envelope was included to encourage a high The Candle Project was asked to provide the response rate. Responses were collated and the bereavement training as part of a 5 day intensive most suitable day and time selected. Favoured residential course.There are 14 courses per year, topics requested by the GPs were incorporated and to date over 1000 officers have been trained. into a rolling teaching programme and 4 A full day is allocated to bereavement, covering sessions over 1 year were timetabled. The sudden and traumatic death, bereavement programme for the first session was posted to all theories and the needs of adults and children. of the targeted GPs. Attendees had to confirm The courses have all been evaluated, and the their attendance by fax and the first teaching teaching on bereavement is consistently rated as

38 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

the best part of the course. The presentation will 2002) – National Guidance (Royal College of Abstract number: 182 illustrate how these evaluations have been used Physicians 2001) – The previous four years Presentation type: Poster to modify and improve the programme. The teaching – Observation of clinical practice – Poster number: P73 outcomes have been as follows: 1 The course Consultation with educators, and clinicians model has been adopted for police forces from different disciplines/professions KEY TRAINING AND PALLIATIVE TREATMENT: throughout the UK and has been piloted in FEATURES OR THE CURRICULUM include: – SURVEY ON A MULTIDISCIPLINARY Holland. 2 The Candle Project was appointed as Clearly defined objectives and outcomes SAMPLE bereavement consultant to the British emphasising theory in practice – Themes of Government for the memorial services arranged communication, ethics, assessment, problem DANIELA CATTANEO, Centre of Study and for the families of the 9/11 World Trade Centre solving and decision making run throughout – Formation, Milan, ITALY, GIUDITTA and Bali bomb terrorist attacks. The expertise of Case-based – Increasing complexity of MINUTIELLO, VIDAS, Milan, ITALY, ELENA

palliative care professionals was recognised at assessment/management as the programme BALZARINI, VIDAS, Milan, ITALY, ELENA APRIL 8 FRIDAY ministerial level, and impacted directly on the progresses – Multi-professional inception, ZERMANI, VIDAS, Milan, ITALY care the bereaved relatives received. The design, delivery – Focus on transferable skills presentation will conclude with a summary of THE CURRICULUM is divided into 15 sections, Background Over the last few years health the lessons to be learnt for the the palliative care which form the basis for the 15 teaching workers in Italy have been increasingly field. Reference. Macpherson, William [1999] sessions: The aim, objectives and competencies requesting palliative care training. However, The Stephen Lawrence Inquiry,London; Her for each of the sessions will be presented there is little internationally available data that Majesty’s Stationery Office. ASSESSMENT SHOs evaluated the programme evaluates how much training influences highly, partucularly the case based/problem professional practice. Aim To assess the impact solving approach integrating all aspects of care. of the training offered by Vidas from 2001 to Abstract number: 179 The informal atmosphere promoted discussion 2003. Methods Analysis of a sample of 25 Presentation type: Poster of difficult issues. Difficulties were encountered subjects randomly picked out of 313 Poster number: P70 with formal evaluation due to: lack of participants in 9 multidisciplinary courses. appropriate measurement tools, none or Average age 41 years, male/female ratio 1/3. Combining palliative care theory with inaccurate completion of questionnaires. Telephon interviewed to assess their work practice – an innovative approach CONCLUSION The application of knowledge before and after participation in the course. skills and attitudes was enhanced by interaction Results Before participation in the courses, the Chris Ward, Specialist Palliative Care Team, with members of the multi-professional team health workers’ relationship with the Northallerton, GREAT BRITAIN, Aston Tessa, outside the sessions. The innovative patient/family was mainly a technical- Hambleton and Richmondshire Primary Care competency based curriculum was well received professional experience (62%), whereas it was Trust, Northallerton, GREAT BRITAIN and would be applicable to other oncology prevalently viewed empathetically (50%) or centres. sympathetically (16%) afterwards and less as Introduction The aim of the poster is to describe purely technical-professional (28%). Difficulties a model of education delivery which combines in establishing a relationship with the patient the theory and practice of palliative care. Abstract number: 181 were reduced following participation in the Participants undergo an extensive training Presentation type: Poster courses (48%®32%): the health workers paid programme consisting of an academic module Poster number: P72 greater attention to body language (68%®88%), and a 4 week secondment working in specialist had a better knowledge of defence mechanisms palliative care. The programme culminates in TOGETHER AGAINST PAIN (76%®88%) and tried harder to identify the the participant undertaking a workbased project patient’s illusions (52%®76%). They already which focuses on changing practice. Method Claudia Pesenti, Servizio Cure Palliative, paid significant attention to family dynamics The poster will evaluate the programme as Viganello, SWITZERLAND, Piero Sanna, Istituto before participation in the courses (84%), but outlined below: Factors leading to the Oncologico della Svizzera Italiana IOSI, Lugano- afterwards, the problems inherent in this were development of the training –Target audience Viganello, SWITZERLAND, Hans substantially reduced (80%®44%). The training for success –Specific details of the programme Neuenschwander, Istituto Oncologico della offered was fully (68%) or partially (20%) in line –Discussion of linking the theory to practice of Svizzera Italiana IOSI, Lugano-Viganello, with the expectations of the sample. palliative care –Outline of the methods SWITZERLAND Conclusions The teaching methods used during employed to evaluate the programme the courses and the topics dealt with had led to –Successful outcomes including tangible For several years the SCL has been promoting significant changes, they improved the health changes in practice and recognition of the an audit program aiming to improve the quality worker–patient–family relationship and programme –Transferability into other training of pain management in cancer patients. This enhanced the use of non-verbal language. A areas Conclusion The poster will report on the well structured program is a framework with a careful, in progress analysis will allow these success of the programme in bridging the number of issues audited by well defined results to be correlated with changes in each theory and practice of palliative care. Having indicators. The program will be shortly professional’s behaviour. achieved recognition within the UK through presented. The public hospitals of Ticino are being awarded a Nursing Times Cancer Nursing coordinated by a central administration (Ente Award in 2003, a NHS Modernisation award and Ospedaliero Cantonale/EOC). Promoted and Abstract number: 183 being adopted by a cancer network as part of supported by the SCL the Palliative Consultance Presentation type: Poster their training programme, the model has Service (PCS) of EOC conducted a pilot project Poster number: P74 proven adaptability and potentially could be of the audit from 1998 to 2000 in the hospital transferable to many aspects of healthcare. of Lugano. Encouraged by the successful Training of volunteers in the outcome EOC encharged the PCS and the SCL Palliative Medicine Clinic and Home to realize a revised program in all the other Hospice in Wroclaw Abstract number: 180 hospitals of EOC. The experience accumulated Presentation type: Poster before, during and after the pilot audit, had Jolanta Zietek, Palliative Medicine Clinic, Home Poster number: P71 taught us that a framework is very helpful but Hospice, Wroclaw, POLAND, Krystyna Sambor, that nevertheless some adaptations to the Palliative Medicine Clinic, Home Hospice / Theory into practice at a radiotherapy peculiar conditions of every individual Oncology Centre of Lower Silesia, Wroclaw, centre: the development of a competency institution are mandatory. Some issues POLAND, Ewa Woyton, Palliative Medicine based multi-professional palliative care represent a key point for the good outcome of Clinic, Home Hospice / Oncology Centre of curriculum for oncology senior house the quality improvement program. Among Lower Silesia, Wroclaw, POLAND, Renata officers (SHOs) them we underline the following: – The Opalinska, Palliative Medicine Clinic, Home institution has to be encharged (mission) to Hospice – Oncology Centre of Lower Silesia, Suzanne KITE, Palliative Care Team, Leeds, carry out the quality improvement program. – Wroclaw, POLAND, Malgorzata Rosolowska, GREAT BRITAIN, Jason Ward, Prince of Wales The institution must identify the problem of Palliative Medicine Clinic, Home Hospice / Hospice, Pontefract, GREAT BRITAIN insufficient pain management and take Oncology Centre of Lower Silesia, Wroclaw, awareness of the necessity to improve POLAND BACKGROUND: A multi-professional palliative (motivation). – The realization has to be carried care teaching programme of 15 one-hour out by the resources of the institution Training of volunteers in the Palliative sessions for senior house officers has been (responsibility). – The institution needs to be Medicine Clinic and Home Hospice in Wroclaw. coordinated by a palliative medicine consultant empowered and adviced by a specialised team Since 1997 seven courses for the volunteers for since 1999. The programme has evolved in such as PCS (expertise). – The organisation and palliative and chronically ill patients have been response to feedback from SHOs and the multi- the evaluation of the data has to be carried out organized. About 350 persons have completed professional team. In 2003 we developed an by an independent organisation such as SCL these courses, 133 help the patients of our innovative competency based curriculum (quality warranty). The paper will focus in detail Team. The course included 61 hours of lectures integrating: – Educational theories (Leung on these key points. and 147 hours of practical classes, the latter in

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 39 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

small groups containing 5–7 persons. The nurses, one for hospital and one for community devised and delivered by doctors trained in lectures and exercises are provided by nurses. These groups meet regularly throughout both primary care and palliative medicine and experienced professionals of the Team: doctors, the year to •refresh knowledge • reflect upon supported by Mersey Deanery. Following this an nurses, psychologist, physiotherapist, social practice in care of the dying • disseminate attempt was made to evaluate the success of the worker and chaplain. The main topics are: the information within their own work setting. intervention measured against the needs idea of palliative care, management of pain and With the permission and support of hospital originally identified by GP Registrars. To date other symptoms, psychological and spiritual managers, it was agreed to run a pilot scheme four courses have been held accommodating 45 issues of incurably ill people. The practical for health care assistants. One nominated doctors from the Mersey region. The initial exercises involve basic nursing, rehabilitation, person from each ward attended four days over course evaluations were very positive and have as well as psychological workshops. The course twelve months for · palliative care education been documented previously. It was important lasts 2 months. It is very important to involve appropriate to their particular needs • to act as however to know whether the theory had been the volunteers in practical activity as soon as a link health care assistant for their ward • translated into practice and was seen by the possible after they completed the course. After reflect upon their care of dying patients. This Registrars to have filled the gaps in their the last course, 65% of volunteers work directly poster describes the development of the pilot knowledge. This poster describes the results of a with the patients, 20% with families, 7% help scheme and the evaluations of the first year follow up questionnaire and compares them with administrative work .The volunteers along with the resulting plans for further with the results of the original survey from continue their education by attending monthly continuation of the scheme. which the course originated, and goes on to meetings, conferences and lectures about describe further developments resulting from palliative care. this. Abstract number: 186 Presentation type: Poster Abstract number: 184 Poster number: P77 Abstract number: 188 Presentation type: Poster Presentation type: Poster Poster number: P75 Spiritual Care: A program for staff Poster number: P79 training in spiritual care. ‘...and what about us?’: Developing and Reflections: District Nurse Case evaluating a formal, inservice, training Marijtje Drijfhout, WL, S&F Palliative Care Studies following Palliative Care programme for hospice staff Services, Southport, GREAT BRITAIN, Cath Education Course Baldry, Queenscourt Hospice, Southport, Cath Baldry, Terence Burgess Education Centre, GREAT BRITAIN, Ruth Killin, Queenscourt Cath Baldry, Terence Burgess Education Centre, Southport, GREAT BRITAIN, Shirley Balmer, Hospice, Southport, GREAT BRITAIN, Justine Southport, GREAT BRITAIN Queenscourt Hospice, Southport, Merseyside, Purnell, Queenscourt Hospice, Southport, GREAT BRITAIN, Rob Case, Queenscourt GREAT BRITAIN, Sandra Leyland, Queenscourt One of the recommendations of NHS Cancer Hospice, Southport, Merseyside, GREAT Hospice, Southport, GREAT BRITAIN Plan 2000 U.K. was to increase the numbers of BRITAIN home cancer deaths. To achieve this district Providing spiritual care is one of the aspects of nursing teams were to be given the opportunity With the development of a purpose built the holistic philosophy of care that guides those to undertake further palliative care education. education centre at the hospice, the who work in Queenscourt Hospice, Southport, The District Nurse Education programme in opportunity arose to provide regular UK. A recent audit told us that we are not very West Lancs, Southport & Formby undertook to educational workshops for all members of good at recording our Spiritual care. Less than give every district nurse the opportunity to hospice staff. Apart from planned mandatory 20% of records had an entry under the heading update palliative care skills and knowledge, and training sessions, provision in the past had been ‘Spiritual’. New UK wide guidelines on thereby increase their confidence. All district rather ad hoc and impromptu. It was felt a more ‘Supportive and Palliative Care for Adults with nurses attended a 6 day course and completed a structured approach was needed. To set the Cancer’ (NICE 2004) state that the spiritual pre and post course questionnaire which scene, several study days were organised for aspect of palliative care needs to be explicit, measured the changes in their knowledge and staff. The emphasis of these days was on team formalised and accountable. Prompted by the attitudes. Some of the results of these are building and covered mandatory and above, we designed a training course for described and have been documented organisational training issues, and local and Hospice Staff, aimed at making the existing previously. Following the course nurses were national palliative care developments. spiritual assessment and care more explicit, and also asked to write a short case study to reflect Following this several lunchtime sessions were encouraging better communication and on the effect of the course on their daily arranged for staff. Topics included assessment recording. We began with a session for all staff, practice by describing a situation or situations and management of common symptoms, issues aimed at ‘setting the scene’. This was followed which either had been, or could have been, surrounding spirituality and social and practical by sixteen small group sessions, around four improved due to their increased knowledge and aspects of holistic care. The sessions were different themes: · definition of spirituality. · skills. These proved enlightening, and enriched repeated at least once to allow as many staff communication/vocabulary. · documentation. · the quantifiable data obtained from the members as possible to attend. Initial evaluation/personal views. We used a mix of questionnaires. This poster describes the case evaluation of the programme was very positive. small group teaching techniques: facilitated studies returned and the nurses descriptions of Following the first year of the structured discussion, goldfishbowl role play, paper-patient the impact of the education. programme, a survey in the form of a short scenarios. The feedback so far has been very questionnaire was carried out to assess the positive. We are planning to repeat the audit impact of regular education workshops. This early next year, and the poster shows the change Abstract number: 189 poster describes the development of the in the quality and quantity of our Presentation type: Poster programme, the results of the survey and plans documentation of spiritual care. Poster number: P80 for the future. INTEGRATED MULTIPROFESSIONAL Abstract number: 187 TRAINING TO DEVELOP THE PALLIATIVE Abstract number: 185 Presentation type: Poster THERAPY NETWORK OF THE LOCAL Presentation type: Poster Poster number: P78 HEALTH AUTHORITY IN REGGIO EMILIA Poster number: P76 Stepping out with confidence: Rosanna Carbognani, Primary Care, Reggio From little acorns: Hospital Health Care Primary Care Palliative Medicine Emilia, ITALY, Daniela Riccò, Reggio Emilia Assistants Palliative Care Link Group Education for GP Registrars Health Authority, Reggio Emilia, ITALY, Daniele Govi, Reggio Emilia Health Authority, Reggio Cath Baldry, Terence Burgess Education Centre, Paula Powell, Terence Burgess Education Centre, Emilia, ITALY, Pierantonio Magnani, Reggio Southport, GREAT BRITAIN, Lesley Dunleavy, Southport, GREAT BRITAIN, Cath Baldry, Emilia Health Authority, Reggio Emilia, ITALY, West Lancs, Southport & Formby Palliative Care Queenscourt Hospice, Southport, GREAT Cristina Pedroni, Reggio Emilia Health Services, Merseyside, GREAT BRITAIN, Nina BRITAIN, Christine Corder, Queenscourt Authority, Reggio Emilia, ITALY Jacobs, West Lancs, Southport & Formby Hospice, Southport, GREAT BRITAIN, Karen Palliative Care Services, Merseyside Groves, Queenscourt Hospice, Southport, Background: Properly planned training is a GREAT BRITAIN determining factor in the development of a Much of the end of life care in hospitals in the network of palliative care, due to its intrinsic U.K. is delivered by health care assistants. There A survey, in 2002, of GP Registrars in the Mersey potential to encourage sharing of objectives, is little opportunity for them to understand the Deanery, resulted in an overwhelming majority with a view to developing shared services, value of their contribution, as part of the ward requesting education in Palliative Medicine for creating a common language and discussing the team in this situation, and to increase their primary Care. As a result of this a 3 day course problems faced by professionals. In our context, knowledge and skills. In this area we already in palliative medicine for GP Registrars, palliative therapies are promoted as an area of have two separate ‘link’ groups for qualified specifically aimed at primary care issues, was expertise which is desirable for all professionals

40 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

who deal with advanced stages of illness, not development of a multidisciplinary course. By Abstract number: 193 only oncology. Goals: a) Greater awareness of sharing experiences and/or ideas with other Presentation type: Poster palliative treatments among professionals in experts we want to formulate recommendations Poster number: P84 different local contexts and hospital contexts. b) for multidisciplinary advanced courses in Development of a shared set of standard skills: – palliative care. Forum of Oncology Nurses and Social Communication skills which allow Workers in the Community professionals to establish a relationship of effective professional support to care for Abstract number: 191 Haya Hershko, district nurse administration, patients and families – Organizational skills Presentation type: Poster Rishon lezion, ISRAEL, Yael Burko, Maccabi based on team cooperation, through the Poster number: P82 Healthcare service shfela district, Rishon Lezion, acquisition of a conceptual/organizational ISRAEL

model of reference, and the definition of a St. Christopher’s Hospice (SCH) & King’s APRIL 8 FRIDAY methodology that can also be used to analyze College Hospital Epidural Service Rationale In Israel, in the last few years, the ethical questions – Technical skills, i.e. Hospice trend is towards health economy and the and home care. Methods: Awareness is Julie O’Neill, Nuffield Ward, London, GREAT patients’ desire to stay at home. There has been encouraged through the planning of – an BRITAIN, Ailish Carr, as above Sally Carr, as a change in attitude towards patients’ care. As a introductory course in palliative treatment, above Vicky Robinson, as above Sue Peat, King’s result, more treatment is given within the organized in four modules aimed at dealing College Hospital, London, GREAT BRITAIN community instead of hospitalization. In light with the themes of ethics, law and codes of of this change, new community services have conduct, clinical medicine and organization of Introduction Hospices face increasingly been developed, including oncology patient services – various supplementary courses on sophisticated methods of pain control. An audit services. Maccabi Health fund gives palliative special subjects throughout the year The in 2003 showed that 6% (n=42) of SCH patients care to oncology patients throughout all stages development of a common set of standard skills had invasive procedures for pain management. of the disease, including physician–nursing in services like Hospice and home care is Nurses have to be competent and confident to treatment and psychology–social–family pursued by planning various in-service training care for patients with indwelling epidural treatment and support by a multi-disciplinarian projects. The methods used are in keeping with catheters. To meet this small, significant team. Throughout the process, oncology adult learning processes. Evaluation: This demand, revised nurse training began in 2003. patients need support by multi-disciplinary structure of training programs has encouraged Aim The SCH Epidural Coordination Group team. Their role is to ease the patient’s burden integration between the Local Health Authority (ECG) was formed in Jan 2004. Comprising of by support care and allowing the patient the (AUSL) and the other points in the network senior hospice nurses, an anaesthetist and a right to an inevitable death honorably. This (public and private non-profits), and a cultural hospice physician it aims to oversee and team, also need support and accompaniment. and professional development which is visible coordinate the weekly anaesthetic round and to The team must work together in order to reach in work methods and the re-orientation of ensure nurse and medical training and support symptoms control, support-giving and possible service goals. is maintained. Method Theory A mixture of solutions to the needs of the patients and their workshop and hands-on supervision is available families and mutual support between the team to clinical staff. The workshop covers anatomy and patients. As a continuation to the training Abstract number: 190 and physiology, indications for intervention, of the nursing and social worker staff in Presentation type: Poster drugs and equipment used, followed by oncology community health care, a decision Poster number: P81 practical demonstration. An ECG nurse works was made to have a cooperative oncology with the anaesthetist every Wednesday forum. Goals: Staff support and Dutch experiences with the development afternoon. Staff who have undertaken the accompaniment. Opportunity to discuss issues, of multidisciplinary palliative care theoretical training are then supervised in the difficulties, dilemmas, obstacles in treatment of education. care of patients having both continuous difficult situations and patients. Giving of epidural infusions and those having one-off information, tools and skills in dealing with Siebe Swart, Nursing Home Physician, nerve blocks. Those yet to undertake training extremely ill patients. Giving patients and Department Of Nursing Home Medicine, VU observe the procedure and are helped to care for families the opportunity for a holistic University Medical Centre, Amsterdam the patient before and after. Results During the prospective towards the illness. Skill NETHERLANDS, Bernardina Wanrooij, General first 9 months of 2004 a total 64 (n=36) referrals development for multi-disciplinary team work. Practitioner, Department Of Clinical Methods & were made to the anaesthetist. 17 nurses are Method : Two hour meetings, once every three Public Health, Academic Medical Centre, now competent in the care of epidurals. A months Contents of General Meetings University Of Amsterdam, NETHERLANDS, further 11 have completed the workshop and Presentation and discussion of case studies and Alexander De Graeff, Medical Oncologist, are awaiting practical assessment. Discussion of ethical dilemmas. Discussion of issues, Department Of Internal Medicine, University The ECG ensures a systematic, flexible approach difficulties and dilemmas dealing with Medical Centre, Utrecht, NETHERLANDS, Henk to achieving and maintaining clinical treatment options and multi-disciplinary team Geertsema, Clinical Psychologist/Education competence and confidence in caring for this involvement. Discussion of difficulties and Manager, Department Of Nursing Home small but significant patient group. The training dilemmas of the caregivers at the personal level. Medicine, VU Medical Centre, Amsterdam, pack and ECG ensures clinical competence for NETHERLANDS, Dick Willems, Professor Of clinicians, thus minimising risk to patients Medical Ethics, Department Of Clinical requiring invasive analgesic techniques Abstract number: 194 Methods & Public Health, Academic Medical Presentation type: Poster Centre,University Of Amsterdam, Poster number: P85 NETHERLANDS Abstract number: 192 Presentation type: Poster What 6th year medical students know In the last decade palliative care has been Poster number: P83 about cancer pain treatment recognised as an integral and multidisciplinary part of healthcare, not exclusively belonging to Palliative Medicine Training : Potential Anna Oronska, Chair and Clinic of a specific medical field. This facilitated the Tools for Assessment and Appraisal Anaesthesiology and Intensive, Wroclaw, further development of education in palliative POLAND, Slawomir Pawel Wozniak, Palliative care. Advanced courses for general practitioners, Dwipaj Datta London, GREAT BRITAIN Medicine Clinic, Home Hospice, Oncologocal nursing home physicians and medical Centre of Lower Silesia, Wroclaw, POLAND specialists were initiated. Essential aspects Palliative Medicine training for specialist addressed in the courses are: symptom control, registrars in the UK is broader in its scope and Introduction: In the curriculum at the Medical ethical dilemmas, communication and emphasis than ever before. The trainee is University in Wroclaw, palliative care is at management of care. Experiences with these expected to demonstrate his or her competency 6thyear, at the end of the study. Material and monodisciplinary courses stimulated thinking in a more formal manner than has traditionally Methods: All 6th year medical students were about the possibilities for organising been the case. This is in line with changes being asked to fill, prior to the palliative care, the multidisciplinary courses. Questions regarding made to training in all specialties. The use of anonymous questionnaires with 9 questions the design of such courses relate to the formal appraisal tools for performance is well concerning cancer pain. Results: Only 54% of incorporation of learning needs from different established in industry but less so for training in responders knew the effectiveness of disciplines into a course that enhances the medical profession. The ability of these pharmacological treatment of cancer pain, 50% competences for the individual and promotes a tools to monitor and highlight areas suitable for knew the WHO ladder. Only 29% stated that multidisciplinary approach in palliative care. targeted training needs to be viewed cautiously most often used route for morphine(mph) Another important question is whether the and not in isolation from other methods of administration is oral one. 14% thought that same learning methods can be used for assessment, and education of trainers and mph always cause addiction. 71% indicated different medical disciplines. During a trainees is vital before implementation. constipation as main adverse effect of mph, but workshop we want to address these questions 21% is afraid of respiratory depression. Only and report our positive experiences towards the 44% could named at least one weak opioid, 72%

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 41 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

knew mph and fentanyl as strong opioids, but Abstract number: 196 for results and success of such training. as many as 48% estimated as an Presentation type: Poster Connecting to an ongoing study at the useful drug in chronic cancer pain. The Poster number: P87 University in Munich on spirituality (Wasner students explain, that they had this information et.al.)a a pre-and post-test, as well as a 6 month from the pharmacology, and met in the clinical Finding palliative patients follow up study were performed. During the practice during the study. Conclusion: The basic congress, results are expected to be made knowledge of the methods of cancer pain Greger Fransson, Kalmar, SWEDEN, Maria available, both as to results of the statistics, as treatment among last year medical students is Olsson, Privo, Oskarshamn, SWEDEN well as to action research, performed by the very poor. It is necessary to improve and unified participants at the end of the course. Teaching the process of teaching and introduces the In the southeast of Sweden is an area called the course raised many questions as well as problem of pain treatment as very important ‘Kalmar län’. There lives 250 000 people. The exciting results. We are especially seeking a part of the curriculum. area is 240 km from north to south and 60 km discussion with the room on teaching from east to west. There are 3 hospitals run by spirituality for (clinical) pastoral care workers ‘landstinget’. Landstinget also offers medical and the topics considered as useful. Abstract number: 195 homecare performed by GPs and homecare Presentation type: Poster nurses. The responsibility for social welfare lies Poster number: P86 within 12 different communities. There are also Abstract number: 198 some private caregivers – mainly GPs. Many Presentation type: Poster Clinical Ethics Committees in Germany – years ago a pioneer doctor started a palliative Poster number: P89 ethical, legal and practical reasons for the home care service around the major city in the empiric failure of a concept of clinical south, Kalmar. A pioneer nurse developed the Training in Palliative Care – Priority of ethics consultation idea of palliative advisory team for the rest of Medical College – Plovdiv, Bulgaria the southern parts. Even though half of the Meinolfus Strätling, Klinik für Anaesthesiologie, population lives in the northern half of Kalmar Petroniya Karamitreva, Director of the college, Lübeck, GERMANY, Anke Fixson, län it was for a long time decided that it Plovdiv, BULGARIA, Penka Kolchakova, College Universitätsklinikum Schleswig-Holstein, wouldn´t be cost-effective to have a palliative of Medicine, Plovdiv, BULGARIA, Nedialka Lübeck., Lübeck, GERMANY, Peter Schmucker, service. 5 years ago a palliative advisory team Krasteva, College of Medicine, Plovdiv, Universitätsklinikum Schleswig-Holstein, was set up after all in the northern part. Today it BULGARIA Lübeck., Lübeck, GERMANY consists of 3 nurses full time and 1 doctor full time. This team is to work towards all kind of In today’s area of healthcare education in A supreme Court decision in Germany ruled out caregivers, landstinget, community and private. Bulgaria there is still lack of adequate training in a relevant role for clinical ethics committees in To educate the staff and also working as palliative care in the sphere of accredited college controversial surrogate decision-making consultants are the two major missions. Now, 5 education. The aim of the present study is to processes in health care or concerning the end years later, we can see an increasing number of fulfill one essential lack in Bulgarian nurses’ of life. Instead, such conflicts are – if necessary – patients with an official diagnose of palliative knowledge and training in palliative care to be referred to and resolved within the regular care. The service is asked for on a regular base through introducing a new separate study subject legal system [1]. As these issues, which are of and 40 nurses have got a special training in “Palliative Care” at the College pre-graduate specific importance to palliative care, have so palliative care. The barrier between the education of nurses. Methods: multi-factor far often been regarded as their “classical hospitals and GPs is lowered but not completely analysis; historical and documental methods, domains”, clinical ethics committees in taken away. In some parts there is also regular statistical methods Results: The need of training Germany now happen to be deprived of a legal meetings with people from the church to learn of nurses in PC is proved through multi-factor basis. This failure of a concept of clinical ethics and help each other. This team has been analysis of the existing situation in the following consultation for legal reasons coincided with evaluated twice by the highschool in Kalmar directions: healthcare education in PC in other serious concerns [2]: Ethical concerns and found being useful among patients, Bulgaria; oncological, general health and focus on their lack of formal legitimation, the relatives and staff. This work will survive the demographic situation; healthcare equipment, questionable independence of the committee coming bad economy which is supposed to economic and political situation; health and and its´ members and an ideologic reduce the costs in landstinget with at least 20 social care. We found out that there were only unilateralism towards the confessions and milj Euro. The team sees nowadays 250 new about 15 hours for training in PC distributed notions of the health care providers, by whom families per year. The rate of deaths at home is among other study disciplines in our study plans these committees are implemented. Matters of increasing mostly because the caregivers at and programs for education of nurses in the last practical concern are e.g. the necessary home feel secure with the support they can get 30 years. We conducted an experimental qualifications of the members of these from such a team. sociological research among 238 of all 260 committees, the quality of their teaching and nurses on the course in our College during the counselling and the accessibility and period 2000–2001 and we found that according (cost)effectiveness of their activities. Abstract number: 197 to their self-esteem 2/3 of the students point that Consequently, clinical ethics committees in Presentation type: Poster there is a lack of adequate professional culture for Germany were empirically never ever accepted Poster number: P88 long care of a patient in terminal condition. We among any group of the involved professionals conducted experimental post-graduate education (e.g. physicians, nurses, jurists). In addition, Spirituality and Palliative Care for in palliative care for nurses, on a project, funded latest research revealed that even among those Clinical Pastoral Carers by the OSI in 2004 and we continue to work in few hospitals, which so far claimed to have the field of nurses education in PC. Conclusions: implemented such a committee, these were Ruthmarijke Smeding, Brussels, BELGIUM, Having in mind the lack and the big necessity of usually only “established” to gain a certificate – Erhard Weiher, University Clinic Mainz, Mainz, qualified specialists for developing the palliative without in reality working at all [2]. Alternative GERMANY care in Bulgaria and on the base of the acquired concepts of clinical ethics consultation, e.g. experience we introduce a new study subject clinical ethics consultation services (CES) run Spirituality in Palliative Care is a multi- “Palliative Care” in the pre-graduate education of by interdisciplinarily trained physicians, professional domain with a rather wide body of nurses at Medical College – Plovdiv since 2005. preferably with special expertise also on the applications. The authors taught an interval field of palliative care, or the likewise course of 120 hours with 22 clinical pastoral interdisciplinary development of guidelines on carers from both the Protestant and the Abstract number: 199 ethical and legal issues in medicine will play an Catholic faith attending. The course was Presentation type: Poster increasingly important role in the future [2]. organized in a cooperation between the Poster number: P90 References: 1. Bundesgerichtshof (BGH) (2003); Academy for Palliative Medicine and Palliative Beschluss vom 17. März 2003: XII ZB 2/03 Care in Munich and the Institute for Pastoral Experimental clinic tutoring project in (Supreme Court Decision on the “Luebeckian Continuous Education in Freising, both in palliative care unit: the Antea student Case”) 2. M. Strätling, B. Sedemund-Adib, P. Germany. To our knowledge, a curriculum for booklet and antealogbook Schmucker (2004); Klinische Ethik-Komitees in teaching Palliative Care and Spirituality to Deutschland – Vom Ende einer wohlmeinenden Clinical Pastoral Care workers does not exist so Michela Iucci, Palliative Care Unit, Rome, ITALY, Illusion (Clinical Ethics Committees in far. The course started from sharing current Ilona Hendrichova, Antea Palliative Care Unit, Germany – the end of a well-meaning illusion); practice and provided available evidence, Rome, ITALY, Francesca Giommaresi, Antea BtPRAX 2004: 176 (Heft 5 / 2004). especially from the Anglo-American body of Palliative Care Unit, Rome, ITALY, Chiara literature. Pastoral carers were invited to share Mastroianni, Antea Palliative Care Unit, Rome, what was experienced as difficult in their ITALY practice, when working with those who are at the last trajectory of their lives. Exersices were Tutor plays an important role, next to the designed, to train appropriate bed-side student, in the particular domain of Palliative behavior, with the collegues being the criterion Care, as he becomes part of the invalids ,

42 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

his sufferings, his fears and their families Abstract number: 201 identification of five main themes. troubles too. Tutors, in such delicate context, Presentation type: Poster Organisation of care was influenced by the have the hard task to make aware the students, Poster number: P92 presence of terminally ill patients. Nurses introducing them, gradually and not violently, experienced a variety of feelings when caring in a personalised relationship with the patients . The Nordic Core Curriculum in for terminally ill patients and these were Helping an oncological invalid means Palliative Care influenced by patients’ characteristics and understanding his embarrassment, his shames suffering, and by disagreements with so that he could feel at ease, express his desires, Valgerdur Sigurdardottir, Landspitali University physicians. Nurses recognised that the presence his fears and his feelings. We introduced the Hospital Kopavogur, Kopavogur, ICELAND, of family members made a difference. They ‘Clinic Tutoring Project in Palliative Care’, to five Anne Nissen, The Danish Cancer Society, wished to integrate relatives in the process of didactic university co-ordinators of nursing Copenhagen, DENMARK care but tended to be cautious until they could

sciences of Rome, on October 2002. This Project gauge what the family might demand of them. APRIL 8 FRIDAY is characterised by an introductory seminary, In 1997, the Nordic Cancer Union (NCU) Nurses highlighted the degree of emotional about the organizative general aspects of the Steering Committee for Patient Support and the labour involved in caring for terminally ill Palliative Care Unit, and one of his most Board of the Nordic Association for Palliative patients. They perceived that they had not been important goal is giving the capability to the Care channelled their common ambition to well prepared to care for the dying and students to operate at peak possibilities in the develop multinational core curricula for PC. An suggested further areas for training and ways in Palliative Care domain. We have tried to educational group was established and a co- which ongoing support might be provided. facilitate their training with a handbook, an ordinator (VS) and a secretary (Helena Findings point to the need for further training useful theoretical tool and with a ‘log book’ to Westerberg MD, PhD) appointed. The group in relation to specific aspects of care and will be fill in, during the training period and thanks to hired an educational psychologist with used to inform the development of training and the tutor help. We have followed 88 students experience in teaching PC and invited an ad support programmes for this group of nurses. right now and we have got many important hoc group made of two persons of each suggestions: 1. Achievement of the specific profession, doctors, nurses, psychosocial and Palliative Care targets 2. Difficult and interesting spiritual professionals, from each of the five Abstract number: 203 moments 3. Tutor importance in Palliative Care. Nordic countries. A weeklong course was held Presentation type: Poster The student could be one of the patient’s point in May 1999. As a preparation, the participants Poster number: P94 of reference and could play an important role were urged to study all available curricula and during his sickness but he might have the right prepared their own. At the end of the week a Nordic Specialist Course in Palliative valours and motivation, an experience that only draft had been produced based on WHO´s Medicine. A joint Venture between The a tutor help can determinate. definition with three academic levels; ‘PC Associations for Palliative Medicine in The Principles’ – pre-graduate, ‘PC Practitioner’ – Nordic Countries post-graduate and ‘PC diplomat’ – post-graduate Abstract number: 200 advanced. Furthermore, the two latter levels Tove Vejlgaard, The Palliative Team, Vejle, Presentation type: Poster were presented by way of Profiles, Educational DENMARK, Lise Pedersen, Bispebjerg Hospital, Poster number: P91 goals and Catalogue of content. Two multi- Copenhagen, DENMARK, Carl Magnus disciplinary groups were activated: medical and Edelbrandt, Kvalificerad Vård i Hemmat, IMPROVING INFORMATION nursing vs psychosocial and spiritual. The draft Hässleholm, SWEDEN, Eva Thoren Todoulos, GIVING SERVICES IN CANCER AND went through a long and detailed process; Löwet Närvård, Upplands Väsby, SWEDEN, PALLIATIVE CARE rewritten and adjusted, comments from Nordic Dagny Faksvåg Haugen, Kompetancecenter i reviewers were obtained, comments from lindrende behandling, Bergen, NORWAY, Stein Gillian Luff, Information Services, London, participants and reviewers incorporated and Kaasa GREAT BRITAIN, Ruth Carlyle, Macmillan new international developments as these Cancer Relief, London, GREAT BRITAIN, emerged, were added into the text, to keep up- Palliative Medicine is not recognized as a Catherine Dickens, Macmillan Cancer Relief, to-date. A presentation of tables with the medical specialty in any of the Nordic London, GREAT BRITAIN professional groups put side by side gives an countries. However, official reports have been idea of what is common and what is specific for published the last years in all of the countries Increasing access to local and reliable cancer each discipine. The NCU can make use of the giving recommendations and guidelines for the information and support is central to cancer copyrighted work and the curriculum is free to establishing of specialist palliative care policy in the UK (Secretary of Health, 2000). In use in all Nordic countries as a reference to a nationwise. Very few doctors in any of the order to deliver this a workforce is needed with national curriculum development for one or all countries have received education in palliative skills in communication and information professionals categories involved medicine, since no formal courses existed so far. management (National Institute for Clinical This conflicting situation therefore presents an Excellence, 2004). Interviews were conducted urgent need to educate doctors in palliative with current managers of information and medicine at a specialist level. In October 2001 a support services. Their training needs were Abstract number: 202 Nordic Task Force Group was established with assessed and the need was identified for greater Presentation type: Poster representatives from the associations of PM in education and training in the management of Poster number: P93 Norway, Iceland, Sweden, Finland and information and the communication skills Denmark. The Group has developed a required to support the users of services who CHALLENGES FACED BY SPANISH NURSES theoretical specialist training course consisting demonstrated a range of information and CARING FOR TERMINALLY ILL PATIENTS of 6 modules of 5 days each and an individual support needs. Macmillan Cancer Relief, a UK- IN HOSPITAL research project. So far 4 modules have been wide cancer charity has developed a partnership completed: 1. Trondheim, Norway. October with the Information Studies Department at the MARIA ARANTZAMENDI, NURSING. ESCUELA 2003 (Evidence-based palliative medicine, University of Central England, to meet this UNIVERSITARIA DE ENFERMERIA, PAMPLONA, symptom control in advanced cancer) 2. educational need. Flexible access postgraduate SPAIN, ALISON RICHARDSON, FLORENCE Tampere, Finland. January 2004 (The education in Health Information Services NIGHTINGALE SCHOOL OF NURSING & imminently dying) 3. Lund, Sweden. May 2004 Management has been developed, MIDWIFERY. KING’S COLLEGE LONDON, (Communication, ethics, teamwork) 4. Bergen, incorporating: Selection, management and LONDON, GREAT BRITAIN, JULIA Norway. September 2004 (Oncological development of information resources; ADDINGTON-HALL, SCHOOL OF NURSING & treatments, emergencies in PM, complementary Communication skills to help people cope with MIDWIFERY. UNIVERSITY OF /alternative Therapies, teaching) Another 2 the consequences of information received, SOUTHAMPTON, SOUTHAMPTON, GREAT modules are planned: 5. Copenhagen, using a multiple intelligences framework; BRITAIN Denmark. January 2005. (Pain, Responding to the needs of diverse communication, symptoms in non-malignant communities; Critical appraisal tools for health Caring for terminally ill patients is recognised as disease) 6. Stockholm, Sweden. May 2005. information. The result is an innovative demanding. Much of what we know about (Management, audit, organisation. Exam and programme drawing together knowledge from nurses’ experiences of delivering care is based presentation of research projects) Each module health and information studies to educate around accounts of nurses working in the USA is followed by a written assignment that is rated current and future workers in this field. and the UK. This study aimed to explore passed/not passed. To pass the course as a whole Spanish hospital nurses’ experiences and to 90% participation is needed and all References understand, from their perspective, the assignments, a written exam and an individual National Institute for Clinical Excellence (2004) Improving challenges of caring for terminally ill patients. research project has to be rated as passed. The supportive and palliative care for adults with cancer, London. Secretary of State for Health (2000) The NHS Plan, Semi-structured interviews were conducted with first course has 30 participants. Evaluation is London: Department of Health. nurses (n=21) from three different sites in two done using Seth Long Course Rating Scale. All hospitals. The interview scheme was based on over, evaluation has been very positive so far the findings from a period of observation. and will be presented at the conference. A next Framework analysis of data has led to the course is starting september 2005.

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 43 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 204 in terminally ill cancer patients. Effective palliative care unit; to compare prescribing Presentation type: Poster management of psychological and physical between patients who remained conscious Poster number: P95 symptoms seemed to be an important aspect of throughout and those who became adequate palliative care in order to reduce the unconscious (defined by the use of the Comfort Education model of palliative desire for hastened death. Assessment Tool for the unconscious patient) at care in Hungary some point and to determine levels of consciousness and comfort in the latter. A Katalin Hegedus, Dept of Bioethics, Budapest, Abstract number: 206 retrospective case note review of 100 HUNGARY, Zsuzsa Biro, Semmelweis University Presentation type: Poster consecutive deaths was carried out. Admissions of Medicine, Budapest, HUNGARY Poster number: P98 of less than 7 days excluded. Data was collected on daily opioid dose; benzodiazepine Introduction: In Eastern Europe 60% of the Palliative care in cancer and other prescribing (daily dose, indication); number of newly diagnosed cancer patients still die, chronic diseases: predicting supportive patients unconscious; length of time from however education on palliation is still at the care needs and life expectancy – patients starting Midazolam infusion, becoming periphery. Medical education has basically a know best unconscious and death; daily discomfort somatic attitude, is paternalistic, and has a (presence of 7 possible signs of distress) and treatment-oriented approach. Introduction of Louise JONES, Mental Health Science, London, unconsciousness scores (modified GCS) of palliative care to undergraduate and post- GREAT BRITAIN, Shamsul Shah, Royal Free unconscious patients. Of 100 patients: 39 males graduate training might be helpful in changing Hospital NHS Trust, London, GREAT BRITAIN, (mean age 70). Unconscious patients: 64: 28 attitude. Results: In undergraduate training the Martin Blanchard, Royal Free And Unversity males (mean age 68). Conscious patients: 36: 11 30 hours course on palliative therapy organized College Medical School, London, GREAT males (mean age 78). 92 patients were for medical students and the 20 hours module BRITAIN, Adrian Tookman, Royal Free Hospital prescribed Midazolam, (81% of conscious, 93% in health care higher education (nurses, NHS Trust, London, GREAT BRITAIN, Michael of unconscious) often as an infusion. The 3 physiotherapists, social workers) is quite a King, Royal Free And University College Medical most frequent indications were agitation, novelty. However the post-graduate 40 hours School, London, GREAT BRITAIN dyspnoea and anxiety. Mean length of time basic and 40 hours advanced hospice trainings from starting a Midazolam infusion to for health care workers are being successful for Background: There is a recognised need for becoming unconscious: 2 days (range 0–19days, more than ten years, since over 3000 people supportive care for patients with non-cancer median 1 day). Mean time from have attended on those courses. The model illnesses. Difficulties in predicting prognosis are unconsciousness to death: 29hrs (median which is exemplary even in Eastern Europe is barriers to early referral to palliative care 52hrs). Median daily dose of Midazolam: completed with one-year hospice specialist services. Referrals depend on health unconscious: 15mg; conscious: 10mg. GCS nurse and co-coordinator trainings. The poster professionals and patients recognising when it scores: range 3–14. Median daily discomfort presents the teaching programs and their is appropriate. Aim(s): To compare in patients score: <1. From this study it can be seen that connection points. Conclusions: In the future, with end-stage cancer and non-cancer illnesses: most patients remain conscious until the day palliative inpatient centres to be established at 1) the accuracy of patients’ and physicians’ before death. Most patients are prescribed university clinics could further promote the estimations of prognosis 2) patients’ and Midazolam at some point in the last week of development of medical education model. physicians’ perceptions of the seriousness of the life. Unconscious patients were more likely to be illness and needs for supportive care. prescribed Midazolam and at higher doses. The Method(s): Twenty patients with advanced wide range of doses reflect prescribing which is Abstract number: 205 non-malignant disease (heart failure, chronic tailored to the individual although median Presentation type: Poster obstructive pulmonary disease and renal doses in unconscious patients remained stable. Poster number: P97 failure), 20 patients with advanced cancer, and Unconsciousness levels fluctuated greatly. 36 physicians were interviewed in a prospective Comfort among unconscious patients was high. Desire for death near the end of life: The cohort study. Patients’ and physicians’ estimates role of depression, anxiety and pain of health status, palliative care needs, prognosis and patient survival at six months was recorded. Abstract number: 208 Kyriaki Mystakidou, Pain Relief and Palliative Results: Non-cancer patients perceived that they Presentation type: Poster Care Unit, Athens, GREECE, Barry Rosenfeld, had similar needs for supportive care as cancer Poster number: P100 Dept. of Psychology, Fordham University, patients although the latter were much less Bronx, U. STATES, Efi Parpa, Pain Relief and likely to survive. All patients were willing and Leading a Life With a Terminal Illness: An Palliative Care Unit, Athens, GREECE, able to estimate their own life expectancy. Interpretive Phenomenological Study of Emmanuela Katsouda, Pain Relief and Palliative Cancer patients correctly estimated a poorer Patients’ and Family Members’ Care Unit, Athens, GREECE, Eleni Tsilika, Pain prognosis than patients without cancer. In Experiences of Hospital End-of-Life Care Relief and Palliative Care Unit, Athens, GREECE contrast, although physicians made little distinction in palliative care needs between Elisabeth Spichiger, Bern, SWITZERLAND Objective: This study evaluated the desire for patients with and without cancer, they were hastened death in advanced cancer patients to imprecise in their estimations of prognosis and This study explored terminally ill patients’ and determine the relationship to psychological were overly pessimistic in non-cancer patients. family members’ experiences of hospital end- distress anxiety and pain. Patients and Methods: Conclusions: It is possible to ask patients with of-life care in one Swiss university hospital. A 120 terminally ill cancer patients were surveyed advanced non-cancer illnesses important end- literature review showed that publications of from June 2003 to November 2003 at a of-life questions, which may be helpful in patients’ and families’ experiences of hospital Palliative Care Unit, in University of Athens, planning their future care. Patients are accurate end-of-life care are limited and fragmented. Greece. The Greek Schedule of Attitudes toward judges of their health status and life expectancy. This study provided a local and particular, but Hastened Death (G-SAHD), the Greek Hospital Non-cancer patients have similar needs for more comprehensive picture. Ten patients and Anxiety and Depression Scale (HADS) and the supportive care as cancer patients. their closest family members participated. Data Greek Brief Pain Inventory (G-BPI) were were collected through repeated participant administered. Results: Significant correlations observations, conversations with patients, and were seen between desire for hasten death with Abstract number: 207 interviews with family members during the G-BPI3 (r =0.279, p=0.002) as well as with G- Presentation type: Poster patients’ hospitalization. Data were analysed BPI8 (r= –.326, p=.0005). The strongest Poster number: P99 using an interpretive phenomenological correlates were observed in HAD depression approach. The thematic analysis revealed four (r=0.605, p=0.0005), and HAD anxiety (r=0.636, COMFORT AND CONSCIOUSNESS: major themes; given the limited time, this p=0.0005). Results of multiple regression BENZODIAZPEINE PRESCRIBING IN THE presentation focuses on caring as decisive aspect analyses showed that current pain (B=–.395, LAST WEEK OF LIFE IN A SPECIALIST of the relationship among patients, families and p=.001), the interference of pain in general PALLIATIVE CARE UNIT care providers. Patients and families greatly activity (B=–.347, p=.037) as well as HAD appreciated care providers who showed depression scale (B=.119, p=.031) were Rachel Thorp, PALLIATIVE MEDICINE, empathy, consideration, patience and respect, significant predictors of G-SAHD. In a further GLASGOW, GREAT BRITAIN, KATHLEEN while they experienced a lack of this caring multivariate analysis, HAD-depression SHERRY, THE AYRSHIRE HOSPICE, AYR, GREAT stance as problematic and disruptive. The care (p<0.0005) and age (p= 0.034) provided BRITAIN, MIRIAM TADJALI, THE AYRSHIRE providers’ caring enabled them to show independent and unique contributions to the HOSPICE, AYR, GREAT BRITAIN, ROBERT constant alertness to the felt needs of patients prediction of desire of hastened death. RUSSELL, UNIVERSITY OF PAISLEY, PAISLEY, and families, whereas a lack of concern led to Concusions: Depression and anxiety (HAD GREAT BRITAIN inattentiveness. The providers’ caring Scales) appeared to have a statistically subsequently enabled patients and family significant relationship with desire for hastened The purpose of this study was to review members to receive support. The mood, tact death. Depression and current pain were the prescribing of benzodiazepines in the last week and style of the care providers set up a disclosive strongest predictors of desire for hastened death of life of patients in a 20 bedded specialist space where patients and families felt cared for,

44 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

or neglected or treated with a lack of examination of issues concerning the end of study also found that there was little construct consideration for their vulnerability. Both life, stimulating people as well as institution to permanence between hypothetical and literal giving and receiving care can feel burdensome. consider such issues. Immediately at the cases of ‘good’ and ‘bad’ deaths, and a tentative Care providers and patients and families must beginning CEF launched a sort of manifesto hypothesis for this variance is offered. negotiate this intimate space in and through entitled Ethical Principles in Palliative Care, their relationship. This study showed that the which had a good impact, becoming a reference care providers’ skillfull emotional engagement point in the Italian discussion on the matter. In Abstract number: 212 can humanize hospital end-of-life care. 1997 CEF presented the Charter of Rights for Presentation type: Poster the Dying, giving a strong impulse to the new Poster number: P104 attitude which brought to the legislation on Abstract number: 209 palliation enacted in Italy in 2001. After the Ethnographic review and analysis of

Presentation type: Poster charter, an analytic comment was published in literature written by people facing death APRIL 8 FRIDAY Poster number: P101 order to clear possible doubts concerning from cancer and other types of disease, controversial issues. Such a commentary is covering the period since 1950 Guiding informal carers of terminal directed to professionals as well as to general cancer patients by specialized public and it prompted a good discussion. CEF Amanda Bingley, Institute for Health Research, district nurses is regularly considering real cases arising at the Lancaster, GREAT BRITAIN, Elizabeth end of life, which are presented by professionals McDermott, Institute for Health Research Marta van Dijk, Patient Care, Maastricht, attending the Italian School of Palliative Lancaster University, Lancaster, GREAT NETHERLANDS, Annemie Courtens, Integral Medicine. A selection of the best cases was BRITAIN, Carol Thomas, Institute for Health Cancer Centre, Maastricht, NETHERLANDS, published in a book: Comitato Etico Research Lancaster University, Lancaster, GREAT Ireen Proot, Institute for Bioethics, Maastricht, Fondazione Floriani, Alla fine della vita. Casi e BRITAIN, David Clark, Institute for Health NETHERLANDS questioni etiche, Guerini e Associati, Milano Research Lancaster University, Lancaster, GREAT 2001, pp. 160. New programs are going to be BRITAIN Introduction: Informal carers are pivotal in the presented and the CEF will be delighted to health care system. Studies indicate that present some of these prospects directly at the Aims: To analyse a sample of narratives written informal carers need information and support, Congress. Committee for Ethics at the End of since 1950 by people knowingly facing death as particularly with regard to the patient’s Life Floriani Foundation (CEF) President: a result of cancer and other illnesses in order to situation and their role as a caregiver. Patrizia Borsellino, PhD (Philosopher of law) compare experiences and show how these relate However, these needs are often not met. Deputy-President: Sergio Fucci, PhD to wider changes in practice in end of life care. Within the scope of the present study, district (Magistrate) Members: Giorgio DiMola, MD Methods: A bibliographic search of libraries, nurses will be trained to guide and support (Medical anthropologist) Michele Gallucci, MD archives, journal and internet sources located informal carers of terminal cancer patients, (Palliative care) Simonetta Lagorio, PhD (No- English-spoken literature including books, since taking care of this patient category is profit organisation executive) Maurizio Mori, poems, newspapers, journal articles, diaries, burdensome to many informal carers. During PhD (Bioethicist) Valerio Pocar, PhD (Jurist) internet postings of writings by people facing four home visits over a period of six weeks, Franca Porciani, MD (Scientific Journalist) incurable, terminal illness. Bibliometric and information and guidance are provided Franco Toscani, MD (Palliative care) qualitative content analysis explored changing regarding the patient’s situation (e.g. medical authorship, experiences, purpose in writing, condition, symptom management) and the and reported impact on readers. Results: The position of the informal caregiver (e.g. health, Abstract number: 211 search strategy yielded less than 30 possible time management). This will be done partly by Presentation type: Poster texts up to 1980, but many thousands of recent a standard programme, partly with reference Poster number: P103 internet texts. Inclusion/exclusion criteria were to specific needs of the individual caregiver. In applied and a purposive sample of 150 writings the present study, the effects of this guiding The Social Representation of ‘Good’ by different authors since 1950 was reviewed. programme will be examined. Method: A and ‘Bad’ Deaths in an English Discussion: Over the last 54 years there have randomized clinical trial (RCT) will be Hospice: findings from an embedded been changes in both the volume of available conducted among 90 informal carers of multiple-case study literature and patterns of writing about end of terminal cancer patients who stay at home and life. With few writings in the 1950s and 60s, have a life expectancy of less than four Stephen James O’Connor, Faculty of Health from the 1980s there was an increase in books months. Informal carers who are part of the Studies, Chalfont St Giles, GREAT BRITAIN and journal articles. The 1990s and 2000s saw a control group receive standard care. Informal sharp rise in all types of literature but carers in the experimental group will be It has long been acknowledged that the bereaved unprecedented internet communications. Only guided by specialized district nurses, in can be affected in positive or negative ways by a tiny proportion actively reports end of life addition to standard care. All informal carers the quality of a loved one’s death, but little is experiences. Therapeutic benefits in writing are participating in the study are asked to fill in a known about the criteria which health care reported combined with a strong sense of questionnaire twice: at entry of the study, after professionals use when evaluating the quality of purpose in sharing the story. There is a clear which random assignment will take place, and death as opposed to life, or discussing this with a sense of social needs when dying, along with eight weeks afterwards. The questionnaire patient’s family. These are likely to have lasting issues of communication with medical staff, concerns informal carers’ opinions on the care impact however on the narratives they create in symptom control, realities of suffering, and and support being offered to them and to the response to this socially and culturally spiritual aspects of dying. Differences were patient they take care of. Other outcome constructed event which may have importance found in the nature and style of writing measures are the burden informal carers beyond their immediate social and between cancer and other illnesses. perceive and their quality of life. Results: Data psychological loss, but few have analysed the collection will start in December 2004. Some role of health carers in defining this event for preliminary results will be available in April the bereaved. This study examined the social Abstract number: 213 2005. representations made by health carers when Presentation type: Poster defining a death as ‘good’ or ‘bad’ using an Poster number: P105 embedded multiple-case study design in an Abstract number: 210 English hospice which incorporated multiple Culture and Religion at the End of Life: Presentation type: Poster data collection methods including focus groups, First Generation Moroccan Elderly in Poster number: P102 informal and formal interviews, participant Antwerp, Belgium. observation and documentary analysis over a six CEF: Promotion of End of Life Culture month period. Whilst one cannot generalise Stef Van den Branden, Interdisciplinary Centre from this case-study, the data did suggest that for Religious Studies, Leuven, BELGIUM, Bert Patrizia Borsellino, Committee for Ethics at the hospice workers use complex, and to a large Broeckaert, K.U.Leuven, Leuven, BELGIUM End of Life, Milano, ITALY, Sergio Fucci, extent, predictable criteria when evaluating the Fondazione Floriani – Floriani Foundation, quality of a death such as the absence of pain or Background: In palliative care and end of life Milano, ITALY, Franco Toscani, Fondazione physical symptoms; but there was marked (EOL) ethics, cultural and religious issues often Floriani – Floriani Foundation, Milano, ITALY, disagreement about other criteria such as receive insufficient attention. This is especially Michele Gallucci, Fondazione Floriani – Floriani spiritual preparedness or acceptance of death. true for the religious and cultural values and Foundation, Milano, ITALY, Giorgio Di Mola, Control and autonomy featured highly in their ideas of ethnic minorities, which leads to Fondazione Floriani – Floriani Foundation, descriptions of ‘good’ deaths, but these were unmet palliative care needs and ethical Milano, ITALY regarded as problematic when exercised to problems that are often misunderstood. ‘excess’ by clients and their families which Although Islam has become the second largest The Committee for Ethics at the End of Life – suggest that hospice workers may occasionally religion in most European countries including Floriani Foundation (CEF) was founded in be subject to cognitive, as well as philosophical Belgium, and this religion has a powerful Milan in 1991. CEF is entirely devoted to the dissonance when caring for dying patients. The impact on the lives and attitudes of its

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 45 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

adherents, this importance is neglected in Description of patients’ and carers’ perceptions staff. Aim(s): To explore doctors’ and nurses’ bioethical and palliative care research. in relation to engaging in discussions about perceptions of using the LCP within the hospice Objective: Gaining insight in the way religion advance care planning. setting. Method(s): A purposive sample of 10 and culture are (not) influencing the EOL nurses and 5 doctors who had worked at the decision making process and palliative care hospice for at least 6 months was selected. This needs of Moroccan elderly migrants in Antwerp, Abstract number: 215 was designed to represent staff working at Belgium and thus contributing to more Presentation type: Poster various grades within the organisation. adequate palliative care for religious minorities. Poster number: P107 Individual interviews (audiotaped and Method: Set against the methodological transcribed) lasting between 30 mins and one background of Symbolic Interactionism and Benchmarking care of the dying with the hour were undertaken. A semi-structured topic Grounded Theory, our qualitative research Liverpool Care Pathway (LCP) guide was used to enable the identification of consists of 40 semi-structured in-depth salient themes Results A total of 12 interviews interviews with Moroccan elderly people in Maureen Gambles, Research, Liverpool, GREAT were undertaken (9 nurses, 3 doctors). The LCP Antwerp. To increase research validity the BRITAIN, Gill Hamblin, Royal Liverpool and was generally regarded by both groups as a researcher is actively co-working with two Broadgreen University Hospitals NHS Trust, useful and important document for the delivery sworn interpreters, clearly outlining their Liverpool, GREAT BRITAIN, Deborah Murphy, of consistent and appropriate care to dying impact. Results: On the ideological level, Royal Liverpool and Broadgreen University patients and their carers. Its usefulness as a different anthropological views on human Hospitals NHS Trust, Liverpool, GREAT teaching tool for new/inexperienced staff was responsibility result from stressing either Allah’s BRITAIN, John Ellershaw, Marie Curie Hospice also highlighted. Perceptions of hospice staff omnipotence or his justice. Translated to the Liverpool and Royal Liverpool and Broadgreen and staff from the acute sector differed in subtle level of praxis, this conservative/liberal contrast University Hospitals NHS Trust, Liverpool, ways. Conclusions: The pathway was generally in degree of openness to European society GREAT BRITAIN regarded favourably by both doctors and nurses operates as a distinctive attribute in EOL in this sample. decision making. Views on pain and suffering – The LCP is a multi-professional document that seen as either something to endure or to promotes the delivery of appropriate care in the alleviate medically – can be taken as a test case dying phase. It can facilitate the clinical Abstract number: 217 for this contrast. By way of conclusion and governance agenda by providing demonstrable Presentation type: Poster based on the available evidence, a number of standards and outcomes of care and is currently Poster number: P109 practical tips for people working with incorporated in the cancer collaborative project terminally ill Muslim patients and their families including a cancer network in the north west of Meeting existential needs at the end of is offered. England. A benchmarking exercise was recently life: a systematic review of interventions undertaken using the LCP to facilitate the evaluation of care delivered to dying patients Barbara Gomes, Palliative Care and Policy, Abstract number: 214 and their carers across the network with the London, GREAT BRITAIN, Richard Harding, Presentation type: Poster specific aims of mapping current LCP use and King’s College London, London, GREAT Poster number: P106 to provide a meaningful comparison between BRITAIN, Irene J Higginson, The Cicely organisations within the hospice, hospital and Saunders Foundation/King’s College London, Advance care planning for patients with community sectors. 24 organisations were London, GREAT BRITAIN inoperable lung cancer invited to contribute 20 consecutive pathways of patients who had died under the care of their Introduction: Patients’ existential needs in Gillian Horne, Doncaster Royal Infirmary, teams. Basic organisational and demographic palliative care are being increasingly recognized Doncaster, GREAT BRITAIN, Jane Seymour, data provided important contextual such as the importance of ‘talking about the University of Sheffield, Sheffield, GREAT information. 16/24 organisations provided LCP meaning of death’ and ‘knowing that life has BRITAIN, Linda Pollard, Doncaster Royal data from a total of 315 patients – 5/9 Hospitals meaning, purpose and has been productive’. Infirmary, Doncaster, GREAT BRITAIN, Nicky (96 patients), 6/8 Hospices (119 patients) and Less is known on effective ways of addressing Pollard, Doncaster Royal Infirmary, Doncaster, 5/7 Community Teams (100 patients). The this palliative care goal. Aims: To explore the GREAT BRITAIN, Pamela Cook, Doncaster Royal results suggest that good practice exists in all available evidence on the effectiveness of Infirmary, Doncaster, GREAT BRITAIN sectors, particularly for goals concerned with existential interventions with terminally ill anticipatory prescribing and discontinuation of patients. Method: Systematic review – articles Background and aim Advance care planning inappropriate interventions. However, data were searched from MEDLINE (1966–2004), involves a dialogue with patients and carers from hospital samples generally has a higher EMBASE (1980–2004), CCTR, psychINFO about their understanding of the patient’s proportion of missing data for the majority of (1972–2004), SSCI (1956–2004), CINAHL medical history and prognosis, and their pathway goals. We can conclude that the (1982–2004), and AMED (1985–2004). preferences for future care. ACP may result in an pathway is a useful tool providing meaningful Inclusion criteria: adult patients facing a advance statement but this is only one comparative data across salient areas of care. terminal or advanced illness; evaluation of a component. This pilot study aims to develop Participating organisations will now come non-pharmacological intervention explicitly and test out an advance care planning (ACP) together to share good practice to facilitate addressing existential issues; outcomes of intervention for use by lung cancer clinical further improvement. anxiety or depression. The quality of the studies nurse specialists (CNSs) with patients who have was assessed using a combination of the Delphi inoperable lung cancer and their family carers. List criteria and the quality rating system of the The views of patients, carers, CNSs and health Abstract number: 216 Cochrane Collaboration Depression, Anxiety professionals will be sought about its feasibility Presentation type: Poster and Neurosis Review Group. Results: Of a total and acceptability. Methods Working Poster number: P108 231 returns, 4 studies met the inclusion criteria. collaboratively with an advisory steering group There were methodological limitations that an intervention has been developed consisting A qualitative evaluation of hospice staff might compromise the generalisability of of: – Interview guide for use by CNSs to address views of the Liverpool Care Pathway (LCP) findings (e.g., all studies were group ACP issues with patients and carers – Training interventions and three were conducted with programme for CNSs – Documentary record of Maureen Gambles, Research, Liverpool, GREAT women with breast cancer). The evidence the ACP process for the patient and their health BRITAIN, Sue Stirzaker, Marie Curie Hospice available suggests a general positive impact of professionals – 3 CNSs will pilot the Liverpool, Liverpool, GREAT BRITAIN, Barbara existential interventions on patients’ intervention in one locality. Reflective diaries Jack, Edge Hill College, Liverpool, GREAT psychological distress although some factors and a focus group will be used to access their BRITAIN, John Ellershaw, Marie Curie Hospice might affect the effectiveness of the views about feasibility, acceptability, and Liverpool, Liverpool, GREAT BRITAIN intervention (e.g., closeness to death). The most support needs – 20 patients and carers will take distressed patients appear to derive maximum part in semi structured interviews about their Background: The Liverpool Care Pathway (LCP) benefit from these interventions. Conclusions: perceptions of the ACP process – Patients’ notes is a multi-professional document that provides Our findings show that although research on will be scrutinized to see how ACP an evidence-based framework for the delivery of existential therapies is still in an embryonic documentation is used – Health professionals care during the dying phase. Originally stage, these appear to have the potential to will take part in telephone interviews about developed to transfer best practice from improve outcomes in palliative care. Further their views and use of the documentary record Specialist Palliative Care into the acute sector, research requires improved methods and Proposed outcomes: – Development of an the document was then introduced into the development of relevant and validated intervention to guide ACP discussions between Marie Curie Hospice, Liverpool in 1997. A focus measures for domains such as existential well- CNSs and patients with inoperable lung cancer group study amongst nursing staff recently being. – Identification of good practice in undertaken in the acute sector identified the communication, highlighting support needs for usefulness of the LCP in the delivery of care in CNSs – Development of a structured record the dying phase. However, no work has yet been about ACP for use by health professionals – undertaken around the perspectives of hospice

46 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 218 Those admitted to a palliative care unit were Abstract number: 221 Presentation type: Poster analysed in more detail. Results: At baseline the Presentation type: Poster Poster number: P110 mean total number of medications taken was Poster number: P113 4.8 (r 0–16, SD 2.83); SSM 2.1 (r 0–7, SD 1.54) Hospice End of Life Pathway (H.E.L.P.) – and MCMC 2.7 (r 0–13, SD 2.40). From referral Evaluating the delivery of care to dying Development of a modified ICP for until last data point before death (mean 20 patients – Health professional perceptions Hospic/Specialist Palliative Care days, med 15, SD 23.8), the total number of of a Network benchmarking exercise medications increased, due to SSM prescribing using the Liverpool Care Pathway (LCP) Keith Grant, Inpatient Unit, Ayr, Scotland, (2.54 more medications, CI 2.20–2.88; p<0.001); GREAT BRITAIN, Rachel Thorpe, Ayrshire there was a decrease in MCMC (1.05 decrease, Maureen Gambles, Research, Liverpool, GREAT Hospice, Ayr, GREAT BRITAIN, Ann Fullarton, CI 0.82–1.28; p<0.001). There was a more BRITAIN, Gill Hamblin, Royal Liverpool and

Ayrshire Hospice, Ayr, GREAT BRITAIN, Fiona marked increase in SSM in patients admitted to Broadgreen Unversity Hospitals NHS Trust, APRIL 8 FRIDAY Evans, Ayrshire Hospice, Ayr, GREAT BRITAIN, hospital close to death. Patients with better Liverpool, GREAT BRITAIN, Deborah Murphy, Susan Campbell, Ayrshire Hospice, Ayr, GREAT performance trended towards using more SSM. Royal Liverpool and Broadgreen University BRITAIN The greater number of medications taken by Hospitals NHS Trust, Liverpool, GREAT older patients reflected prescribing of MCMC. BRITAIN, John Ellershaw, Marie Curie Hospice Introduction The application of Integrated Care Shorter duration of survival was seen in patients Liverpool and Royal Liverpool and Broadgreen Pathways (ICP) has become widespread in with lower performance status and those taking University Hospitals NHS Trust, Liverpool, medicine. In hospital settings and particularly larger numbers of MCMC. Conclusions: GREAT BRITAIN in palliative care, the Liverpool ICP (LCP) for Although MCMC are reduced, more work is the dying patient (Ellershaw et al) has been needed to assist practitioners in the appropriate There is increasing recognition amongst leading commonly adopted. Aim To monitor the rationalisation of medications to focus on health care officials in the UK of the need to implementation of the LCP in a hospice setting, helpful treatments while minimising harm prioritise care for dying patients and their and then introduce and review a revised LCP from polypharmacy. families. However, evaluating the standard of called the Hospice End of Life Pathway (HELP) care delivered remains a challenge. The specifically designed for use in a Specialist Liverpool Care Pathway (LCP) has been Palliative Care Unit / Hospice, catering for the Abstract number: 220 identified in recent guidance from the National potentially more complex patient problems and Presentation type: Poster Institute for Clinical Excellence (NICE) as one accounting for specialist skills of the staff. Poster number: P112 mechanism for promoting high standards of Method Retrospective review of 30 consecutive care in the dying phase and inherent within its patients’ LCP documentation scrutinizing Death in the Emergency Department: design is the potential for auditing the care accuracy of form completion, initial assessment practices and ethics delivered. A benchmarking exercise across a goals and pain/comfort measures. LCP cancer network in the northwest of England documentation was then entirely redesigned Marie-France Couilliot, Public Health, Bobigny, was undertaken recently and involved 16 both in terms of content, guidelines and layout FRANCE, Florence Douguet, Bretagne Sud organisations (5 hospitals, 6 hospices and 5 (gate leg folder design allowing clear sight of all University, Quimper, FRANCE, Daniele Leboul, community samples) and a total of 315 patients relevant recordings). HELP formed a stand Bretagne Ouest University, Brest, FRANCE, whose care in the dying phase was delivered via alone document comprising all necessary Carine Vassy, CRESP Reseach Center INSERM / the LCP. The results illustrated the usefulness of paperwork for all disciplines. The audit cycle Université Paris 13, Bobigny, FRANCE the LCP in identifying areas of good practice was completed with 30 patients using HELP. and areas where practice could be improved. Results Patient demographics were similar Death in the Emergency Department is a Workshops, where representatives of between the two groups. However a greater reality. In French hospitals, it generally occurs participating organisations came together to accuracy of data recording was shown in HELP. in the short term hospitalisation unit linked to discuss and share ideas in a non threatening Patients were commenced on HELP earlier and the Emergency Department. The primary aim learning environment, were an important had an improved ‘satisfactory outcome’ as of these units is to welcome emergency element of the exercise. A questionnaire defined by < 2 variances per 24 hours after a patients waiting for being allocated a bed in an evaluation of the whole exercise was carried out management/medication review. Formal and hospital ward or needing just monitoring involving 60 participants. The questionnaire anecdotal feedback from staff showed a positive watching for a short period. In France, the included items requiring likert style responses impact from HELP particularly in ease of data number of deaths in these units is quite high along with open ended questions seeking entry and facility to interpret variance (the third higher after intensive care unit and comments and allowing for the expansion of recordings and response to oncology or internal medicine ward in our ideas. It sought information about the logistics management/medication. Conclusion LCP study). However these units are neither meant, of taking part, how appropriate and useful the standardises documentation and facilitates nor seem to be organized, to provide palliative feedback of results and the workshops had review. The HELP appears to, in the hospice care. There is a gap between the goal to provide been, and asked for suggestions for setting, have some additional benefits and was rapid and temporary acute care and the reality improvement. The results will be discussed in well received by the staff. of end of life. The aim of this study is to the light of their potential impact on further explore care and support practices to dying planned network and national benchmarking patients and their relatives and to analyze the exercises. Abstract number: 219 caregivers’ feelings about their work. Various Presentation type: Poster methodologies have been combined to study Poster number: P111 death in two French Emergency Departments Abstract number: 222 (one in the west France and one in the suburbs Presentation type: Poster A longitudinal analysis of medication use of Paris): an epidemiological retrospective Poster number: P114 by a regional palliative care population patients’ records analysis, sociological observation and focus groups sessions carried Interviews on death David Currow, Department of Palliative & out with a psychodynamic work approach. We Supportive Services, Adelaide, AUSTRALIA, will present two different types of end of life Helga Hansdóttir, Geriatrics, Reykjavík, James Stevenson, Flinders University, Adelaide, trajectories and explore the major issues ICELAND, Sigrídur Halldórsdóttir, Háskólinn Á AUSTRALIA, Tania Shelby-James, Flinders concerning care management : First : how to Akureyri, Akureyri, ICELAND University, Adelaide, AUSTRALIA, Amy identify occurences of end of life period and, Abernethy, Duke University Medical Center, more generally speaking, possible cases of Abstract Objective: This study is done to Durham, U. STATES withholding treatment Second : decision examine the ideas of elderly individuals on life, making process to withhold or withdraw futile death and treatment at the end-of-life in order Objective: To quantify the use of medications in care Third : how to find an hospital bed for to understand what the basis for those wishes palliative care patients from the time of referral patients with short expected life time Fourth : are. Design: A qualitative study. Participants and to death, looking at the relative contribution of how to develop early team work with the setting: Eight Icelandic individuals 70 years old symptom specific medications (SSM) and palliative care team to provide continuity and or more interviewed at their homes. Results: All medications for co-morbid medical conditions quality of care This study underlines the participants had a history of a good life despite (MCMC). Methods: Prospective medication, necessity to develop an ethical reflection on experiences of death and loss. Despite demographic and performance status were the place of death not only in the emergency enjoyment of life, an accepting attitude towards collected on a convenience sample of 260 departments faced with this serious and death was evident. Everyone agreed on the people who were enrolled in a larger RCT in frequent event but also for the acute hospital neccessity to limit life prolongation if there was Adelaide, Australia. Medication usage was wards under drastic economic constraints. no hope of recovery, much suffering, mental collected monthly from referral until death and physical ability compromised, no (mean 124 days, median 93, SD 103, r 11–752). possibility of living a good life and being a Subgroup analyses of age, performance status burden to others. The participants based their and baseline use of MCMC were performed. attitudes toward end-of-life treatment on the

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 47 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

likely outcome, their age and health, views on BRITAIN, David Oliviere, St. Christopher’s Abstract number: 226 life and death, their relationship with others Hospice, London, GREAT BRITAIN Presentation type: Poster and experience. Discussion: A model of end-of- Poster number: P118 life discussion between a physician and a Background: UK government policies advocate patient is presented: The discussion takes place that patients and their families should be How do Norwegian physicians define the within an ethical and cultural framework, involved in the design and evaluation of health term ‘terminal’? which is sometimes discussed. Phycisians give care services. Aim: –To identify how palliative information on diagnosis, prognosis and care service providers access the views of Lotte Rogg, Dept. of Oncology, Oslo, NORWAY, treatment options. Patients evaluate the patients and families –To explore how patients Peter Kjaer Graugaard, Dept. of Behavioural information in view of their health and age, and families experience this process Method: A Sciences in Med. University of Oslo, Oslo, views on life and death, relationship with purposive sample of 20 patients and 8 carers NORWAY, Jon Håvard Loge, Dept. of others and experience. Conclusion: Elderly who had used or were currently using cancer or Behavioural Sciences in Med. University of patients evaluate treatment options in view of palliative care services were recruited. In Oslo, Oslo, NORWAY their own age and health, views on life and addition 17 health professionals and 5 academic death, relationship with others and experience experts were contacted. Semi-structured Background and Aims: The management of interviews explored the methods used by service patients with life threatening illnesses is providers to obtain patient and carers opinions. governed partly by the expected prognoses of Abstract number: 223 Patient and carers experiences of participating in the patient. There exist no clear definition of Presentation type: Poster meetings were investigated and all parties were the term ‘terminal’, yet it is widely used in Poster number: P115 asked how participation could be improved and clinical practice. The present study explores how its impact could be assessed. Results: Norwegian physicians’ understanding of how Treatment Aspects of Spiritual –Patients in remission from cancer or attending many weeks a terminal patient has left to live. Approaches that Enhance palliative day care are those who are most Materials and Methods: A national Patient–Clinician Communication commonly asked to participate –Forum representative survey was carried out, with 957 meetings are commonly used to obtain patient (60%) of the 1605 invited participants Barbara Dane, Social Work, New York, U. and carers opinions. –Participants were answering this actual question that was part of a STATES, Robert Moore, New York University, motivated by a desire to give something back to larger postal survey. Results: Norwegian New York, U. STATES the community and improve services –Patients physicians greatly vary in their understanding at the end of life are less likely to have their of the term, with a range of estimated weeks to The spiritual beliefs and practices of both views and opinions sought –Carers express live from one to twenty-six. The median professionals and their patients are pivotal and different views to patients in a number of key estimation is two weeks survival, but there are important resources in coping with chronic and areas –Dedicated time, effort and skill is required differences between clinical specialities. More terminal illness. Spiritual approaches, e.g. to access patient and carers opinions and to than twenty percent of the general practitioners prayer and meditation, are an understudied utilise these in undertaking service change (GP), psychiatrists and public health specialists aspect of patient–clinician communication. The Conclusions: –Often only the views of easily define ‘terminal’ as having more than four purpose of this study is to understand how accessible patients and carers are sought weeks to live. Twenty-five percent of hospital- spiritual approaches and other factors influence –Opinion is dominated by the experiences of based clinicians define ‘terminal’ as having less the interaction with palliative care patients. people attending palliative day care or by than a week to live. Conclusion: Norwegian Two samples (total N=327) of American social articulate patients who are in remission from physicians greatly vary in their understanding workers were surveyed regarding their use of cancer –The opinions of the very ill and dying of the term ‘terminal’. Some of the differences spiritual approaches in practice. Linear are neglected –Creative approaches, dedicated can be explained by differences in clinical discriminate analyses were performed where a time and effort are required to access the practice. With understanding of terminality categorical variable defined the set of opinions of the very ill to ensure palliative care ranging from one to twenty-six weeks among dependent variables. The five dependent services and policies develop to meet the needs physicians chances are that the planning of a variables included working with clients who of those at the end of life. patients’ last few days may come as a surprise to had: cancer, HIV/AIDS, struggles with death and both patients and carers. The lack of a dying, physical illness and disability/handicap. commonly agreed definition of terminal A total of 21 independent variables were Abstract number: 225 among physicians may have implications for screened as possible predictors that included Presentation type: Poster the treatment of individual patients and the variables such as theoretical orientation, Poster number: P117 planning of health care services towards the end religious preference, the respondents’ personal of life. issues or struggles with health, mental health Meaning of Life among Persons with and other variables. All predictors below were Advanced Cancer found to be significant at p<.001. Predictors in Abstract number: 227 working with Cancer patients were: guided Susan Pope, Education, Bern, SWITZERLAND Presentation type: Poster imagery/visualization, the therapists’ self- Poster number: P119 reported mental and physical illness (56% – The purpose of this study was to explore classified); HIV/AIDS: use of yoga, free-writing, meaning of life among advanced cancer Local impact of the Liverpool Care etc., and self-reported physical illness (65%); patients. Drawing from the philosophies of Pathway on patient care and its Struggles with death/dying: reading and/or Heidegger and Gadamer, a qualitative design documentation in the dying phase. Local recommending spiritual or religious materials using a hermeneutic existential experiences of nurses and doctors and the use of yoga, free-writing, etc. (58%); phenomenological approach to research was delivering the LCP Physical illness: use of guided used with a sample of 12 participants, imagery/visualization, exploring religious and purposively selected from an oncologist’s Susan Crabtree, Royal Wolverhampton spiritual elements in dreams, use of yoga, free- practice and an in-patient clinic in German- Hospitals Palliative Care Team, writing, etc. (61%); and Disability/handicap: speaking Switzerland. Interviews were Wolverhampton, GREAT BRITAIN self-reported physical illness and situational conducted in the patients’ homes and/or in the stress, and use of yoga, free-writing, etc. (58%). respective clinics. The results suggested three This study uses a multi method approach to Study results support the use of spiritual divisions: (a) meaning in life – a conditional evaluate the use of the Integrated Care Pathway approaches that may foster patient-clinician experience of ascribed meaning, (b) meaning of for the Last Few Days of Life in an Oncology communication. life – an unconditional experience of ultimate Ward. The methods were quantitative Post- meaning, and (c) a division in which meaning implementation Document Analysis with n=17 had little or no place within the patient’s frame completed pathways, ongoing analysis with Abstract number: 224 of reference. Much work has been done to sub-sample of n=7 patients that had been Presentation type: Poster control symptoms associated with end-stage receiving care for more than 24 hours. Poster number: P116 disease; however, few studies have addressed Qualitative methods were Focus Group meaning of life in advanced cancer patients. Discussion with n=15 (nursing team members) ‘Being Heard’: Engaging patients and Through the present study the researcher was and Semi-structured Interview with n=1 families in designing, developing and able to step into the lives of the participants and medical member of the ward team. By evaluating palliative care in the UK share to a degree their experience. Though comparing pre and post document analysis more work needs to be done in this area of trends for improved documented care were Anita Sargeant, Palliative & End-of-Life Care research, the findings suggest numerous identified. These were rationalisation of non- Research Group, Sheffield, GREAT BRITAIN, implications related to the themes that essential medication, pro-active prescribing of Sheila Payne, University of Sheffield, Sheffield, emerged: dignity, coping, hope and drugs in anticipation of end-of-life symptoms GREAT BRITAIN, Neil Small, University of hopelessness, sense of belonging, mission and and discontinuation of both nursing and Bradford, Bradford, GREAT BRITAIN, Merryn commitment, and to the current policy issues of medical intervention. Communication with Gott, University of Sheffield, Sheffield, GREAT physician assisted suicide and euthanasia. regard to religious and spiritual needs of

48 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

patients and family was also documented more sedation in homecare aims to apply quality and Abstract number: 231 frequently with an increased trend for written increase the possibilities of care-comfort. Presentation type: Poster information to be given. Variations from Poster number: P123 planned care were similar to those reported in other studies (Ellershaw et al 2003, Fowell et al Abstract number: 229 The Price of Living Longer is Dying Slower 2003) in that pain, agitation, respiratory tract Presentation type: Poster secretions and mouth care were all problematic Poster number: P121 Barry Clark, Chaplaincy Dept, Birmingham, in the terminal phase. Findings from thematic GREAT BRITAIN analysis of qualitative data suggests that the Introduction to the session on “Families” pathway had a positive impact on the care of a resource for home care? 100 years ago most people died in their 40’s or dying patients by providing clear direction for 50’s of communicable diseases within a few

care, improved symptom control, freed time Sheila Payne, Palliative & End-of-Life Care days or weeks of diagnosis. Now most die in APRIL 8 FRIDAY and a calm environment for patients to die. Research Group, Sheffield, GREAT BRITAIN their 60’s or 70’s of degenerative diseases within Barriers to implementation were medical a few monthhs or years of diagnosis. In other resistance; these findings were similar to Jack et This paper will briefly introduce the literature words, we live longer but die slower! One result al (2003). New themes identified by this study and current theoretical perspectives on the of this has been the rise of palliative medicine, were the pathway a teaching tool and the contribution of families to enabling patients to while another has been the explosion in the emergence of the invisible pathway as a direct receive care and to die at home. It starts with a field of medical and legal ethics. Many response to the resistance encountered. discussion of the terms ‘families’ and ‘carers’ countries are now being forced to develop Conclusions. The Integrated Care Pathway had and explores the assumptions which underpin legislation to help people resolve the tension a positive effect on the care given to dying the use of these terms, and the extent to which between the quantity of life – which we seem patients. The Liverpool Care Pathway Project the word ‘carer’ is used by others compared to able to extend almost at will, and the quality of should be implemented throughout the Acute being self attributed. A synthesis of the life – which remains elusive for many. We are Trust and the education programme, integral to palliative care literature demonstrates that while becoming more familiar with such ideas as pathway implementation should become families’ voices are present, they have living wills, advance directives, terminal mandatory. predominantly been consulted as proxies for sedation and euthanasia, while different patients rather than in their own right. What organisations and pressure groups lobby for or research there is has tended to portrayed caring against their particualr ideology. However, I Abstract number: 228 as a ‘burden’ and carers as victims of wish to argue that at the heart of palliative care Presentation type: Poster circumstance. The extent to which current is a recognition that death is inevitable, and Poster number: P120 palliative care policies in the UK recognise the that no ethical or legal framework or practice separate needs of families as opposed to the can deflect this reality. In this sense palliative Sedation of the patient in palliative preferences and needs of patients in planning care lives ‘Beyond the Borders’ in the eyes of homecare: The support from a and managing end-of-life care will be discussed. many – a place they do not wish to travel, a multidisciplinary homecare team of a foreign land. We hope to make it a good death, network in palliative homecare a death that adds meaning and value to life, but Abstract number: 230 in the final analysis it is to be a death. Palliative Myriam Arren, UA Campus Drie Eiken, Wilrijk, Presentation type: Poster care needs to embrace this reality and enfold it Belgium, Noël Derycke, UA Campus Drie Eiken, Poster number: P122 is whatever spirituality – sacred or secular – Wilrijk, Belgium, Bernadette Van Beurden, UA enhances the care we offer. Campus Drie Eiken, Wilrijk, Belgium, Tine De When Culture and Family Clash with Vlieger, UA Campus Drie Eiken, Wilrijk, Palliative Care Belgium Abstract number: 232 Sharon Kendall, La Trobe University, Bendigo, Presentation type: Poster Introduction VICTORIA, AUSTRALIA Poster number: P124 Palliative sedation is ‘the intentional administration of sedatives in the doses and A large phenomenological study into the effects End of life communication: combinations required to lower the of the nurse–patient relationship on clinical experiences and views of Pre Registration consciousness as much as possible of the learning in Cancer and Palliative Care was House Officers terminally ill patient in order to adequately undertaken in three countries. The participants, control refractory symptoms’. It is an acceptable 392 nurses, were asked to provide a vignette Jan Schildmann, Inst for History of Medicine treatment in medical decision-making about a care episode from their practice of a and Medical Ethics, Erlangen, GERMANY, Annie regarding life-end were In view of this the patient with a diagnosis of cancer. The Cushing, Queen Mary’s School Of Medicine network for palliative homecare gives advice participants were asked to discuss the impact of and Dentistry, Barts and The London, London, and support to all involved carers in this field. this encounter on clinical learning and clinical GREAT BRITAIN, Len Doyal, Queen Mary’s Aims practice. Some of the data collected in Hong School Of Medicine and Dentistry, Barts and To make palliative sedation in the home Kong, dealt with conflict related to end of life The London, London, GREAT BRITAIN, Jochen possible. Support of both patient and all home issues and the right to decide care issues. Most Vollmann, Friedrich-Alexander-Universität carers during and after palliative sedation commonly the conflict revolved around the Erlangen-Nürnberg, Erlangen, GERMANY process. Giving of clear and understandable wishes of families taking precedent compared to information regarding the patient, their family the rights of the patients. Family is of great Following the recommendation of the General and those in the immediate environment. importance in Chinese society and there still Medical Council in Tomorrow’s Doctors (1993) Education of professional care-workers when remain significant misconceptions about sessions of communication skills, ethics and requested. Cancer and Palliative Care. Other conflicts law are now required at most medical schools in Method centred on nurse–physician relationships and a Britain. In this paper we present the results of a Continues accessibility (24h/24h) and, when perceived lack professional respect for nurses’ survey among Pre Registration House Officers requested, the necessary availability. opinions. In Hong Kong medical dominance is (PRHOs) regarding their experiences, Exploration of the aid request. the norm. Nurses were required to participate in knowledge and views with respect to the Arranging the home visit. Consultation with resuscitation efforts, for patients with end stage disclosure of bad news and different aspects of professional care-workers over possible negative disease, against the patient’s previous requests. end of life communication. All PRHOs had advice concerning palliative sedation. Some nurses struggled with caring for dying received training in communication skills as Psychosocial support of the patient and all patients, who had never been told their well as in ethics and law applied to medicine. involved in the caretraject until and after death. diagnosis. Participants stated they believed 104 PRHOs completed the questionnaire Evaluation of the offered support. firmly in patients’ rights and their own (response rate 78%). 95,2% of the junior Results responsibilities as patient advocates and yet doctors believe that patients should be A suitably informed patient and their family tacitly complied with family/physician informed about a serious life threatening maintain ownership over the last part of the directives. Responses from the participants illness. 78% have initiated breaking bad news to caretraject An occasional homecare team can identified a number of such episodes. a patient at least once. 96,2% indicate that they request nursing expertise from a network. The Participants clearly felt challenged, personally have discussed bad news with relatives of a nursing expertise of the multidisciplinary and professionally. Nurses in the study patient. 44,2% of the PRHOs have discussed support-team of the network makes a recounted having learned from the encounters, with patients about a DNR order and 68,3% contribution to the ‘carrying-power’ of the however they remarked on the negativity of the have discussed this issue with relatives. ‘Having occasional homecare team in palliative experience. One participant simply stated “I all relevant information available’ (88,4%), sedation. learned how to lie”. The identified care episode ‘thinking that they were not the appropriate Conclusion and the nurse–patient relationship, according person’ (86,5%) and ‘judging how much Thanks to the support of the nursing expertise to participants, did change their clinical practice information patients want’ (76,9%) are cited of the multidisciplinary support-team palliative but often not for the better. most frequently by the PRHOs as factors

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 49 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

causing difficulties when discussing bad news hospice clinicians in making decisions when OBJECT – Terminal sedation has been defined with patients. The findings will be analysed on ethical issues make the correct course of action as the induction, through medication, of a the background of strengths and weaknesses of uncertain. · Advise on hospice policies and permanent coma in immanently dying patients the undergraduate training. In addition factors, protocols that have an ethical dimension. · Be suffering from refractory symptoms. other than the training of medical students an educational resource on ethical issues. The Expectations are that this practice will grow in which may be helpful for the implementation CEC’s membership includes nursing, palliative the future. However, there is much moral and of good clinical practice of breaking bad news medicine, social work, chaplaincy and conceptual confusion as to what terminal and end of life communication will be psychiatry. External membership comprises an sedation is and how it relates to euthanasia. Our discussed. academic ethicist, an academic lawyer and a object is to lift up this confusion in view of a palliative physician qualified in medical ethics. national guideline and possible policy Full meetings of the CEC occur quarterly but a regulations. METHODS – We sent out a Abstract number: 233 mechanism exists for virtual meetings in urgent questionnaire to GPs, as well as medical and Presentation type: Poster circumstances. Experience to date The nursing staff in hospitals, nursing homes, and Poster number: P125 Committee has now met five times. Presented hospices (n = 440). Furthermore, we held in- cases have involved duress, suicide pacts, home depth interviews with members of the same ATTITUDES TOWARDS EUTHANASIA AND discharge, and treatment decisions. The CEC target groups (n = 42). Areas covered included PHYSICIAN ASSISTED SUICIDE AMONG has also shaped new policies on resuscitation indication, effectiveness, medication schedules, PAKISTANI DOCTORS and advance directives, advised on the legal hydration and nutrition, decision-making, implications for practice of a recent English burden of care, and difference to euthanasia. Syed Qamar Abbas, Palliative Medicine, court case and considered the ethical use of user RESULTS – A wealth of results include the Hastingwood, GREAT BRITAIN, Syed Zafar feedback data. The CEC bases decision-making following. Pain, dyspnoea, and anxiety are the Abbas, Muhammad Medical College and in clear academic, legal, philosophical and most common indications for terminal Hospital, Mirpurkhas, PAKISTAN clinical thinking, and therefore minimises the sedation. 49% of the physicians report that risk of inappropriate outcomes for patients, terminal sedation precedes a natural death. 5% Objectives: In 2002, The Netherlands became families and the public. Already it has an of the patients still live after 7 days. 33% of the the first country to legalise Euthanasia. After established place in the hospice’s governance physicians suffer from stress associated with this, most of the world is discussing the system and is becoming a valued resource for terminal sedation. CONCLUSIONS – Terminal attitudes towards Euthanasia. However, most hospice staff. sedation covers a heterogeneous group of data about the perceptions on Euthanasia is practices, the fact that the patient is induced to generated in the western world. We assessed the sleep being a common denominator. Sedation attitude of Pakistani doctors towards Euthanasia Abstract number: 235 is either acute and intended, or only gradually and Physician Assisted Suicide with the help of Presentation type: Poster evolving as a side effect of treatment. Choices case studies questionnaires. Methods: A Poster number: P127 involved may be difficult, but are not questionnaire was developed discussing two commonly perceived as moral dilemmas. case studies. These case studies explained one Advance directives and palliative Terminal sedation should be viewed as normal patient each of Motor Neurone Disease and sedation: experience of a hospice in Italy medical treatment, if medication doses are widespread malignancy. It was distributed, by proportionate. Guidelines help, but bringing hand, to a convenience sample of doctors from Adelaide Conti, Forensic Science Department, terminal sedation sub judice is inappropriate. As all specialities, who were trained in Pakistan Brescia, ITALY, Paola Delbon, Centre for physical suffering can be alleviated by terminal with most of them still working in India. The Bioethics Research Forensic Science sedation, there is no medical indication for distribution and collection of questionnaires Department, Brescia, ITALY, P Borghetti, euthanasia, but most physicians accept identity was carried out within six months. Analysis and Hospice Domus Salutis, Brescia, ITALY, and human dignity as valid arguments for Results: 52/100 (30 males, 22 females) doctors Giovanni Zaninetta, Hospice Domus Salutis, euthanasia, too. Terminal sedation is then not returned the questionnaires. They belonged to Brescia, ITALY an alternative. Muslim (47) or Hindu (5) religions. The mean age of doctors was 42.8 (26–66) with mean The Authors intend to make some experience 15 (2–40). 8/52 (15.3%) doctors consideration on the attitude of patients in a Abstract number: 237 agreed for Euthanasia for MND patient whereas Hospice toward advance directives, i.e. to say Presentation type: Poster 6/52 (11.5%) agreed for Euthanasia for cancer what health care they would want to have in Poster number: P130 patient. 7 Muslim, 1 Hindu, 6 males and 2 their possible future, were they to become females doctors agreed for Euthanasia. Their incompetent, and toward possible contents of Ethics & Spirituality: rephrasing the ars mean age was 41.1 (29–57) and mean these recommendations. The Authors pay moriendi tradition experience was 13.3 (3–30). Conclusion: attention also to health care professionals’ Although there is understanding of Euthanasia tendency to patients’ earlier expressed wishes Carlo Leget, Ethics, Philosophy and History of and Physician assisted suicide, minority of and to the possible role for advance directives in Medicine 232 EFG, Nijmegen, NETHERLANDS doctors support the idea. The doctors decision-making process about medical supporting Euthanasia are likely to be males treatments. In particular, with regard to possible [Object of study] Although the importance of and belong to slightly less mean age and contents of advance directives, the Authors the spiritual dimension of palliative care is experience group. intend to verify patients’ attitude toward widely acknowledged, in practice this palliative sedation in the management of dimension causes much embarrassment among refractory symptoms, and possible changes of caregivers. Many ‘spiritual items’ are dealt with Abstract number: 234 their opinion about this practice, after illness’ in terms of ethics. The objective of this study is Presentation type: Poster appearance, as well as because of their the design of a practical model that is helpful Poster number: P126 admission to a Catholic centre. The study, for identifying and dealing with the spiritual perspective, will be carry out on 100 dimension of palliative care, and linking it with INNOVATION IN ETHICAL GOVERNANCE: consecutive patients admitted to the Hospice. A relevant ethical themes. [Method] 1. THE FORMATION OF A CLINICAL ETHICS questionnaire will be administrated to the Participatory observation and interviews in two COMMITTEE FOR A HOSPICE patients or their relatives, to verify in particular nursing homes; 2. Historical and systematical the frequency of the practice of advance investigation of different models of spirituality; NIGEL SYKES, MEDICINE, LONDON, GREAT statements, the patients’ preferences between 3. Proposition of a practical model for spiritual BRITAIN, VICKY ROBINSON, ST treatment options – before and after their care; 4. Discussion of results with different CHRISTOPHER’S HOSPICE, LONDON, GREAT admission – and physicians’ and patients’ workers in palliative care. [Results] Participatory BRITAIN attitude toward the role of these observation showed (1) the crucial role of recommendations. managing emotions in palliative care and (2) Introduction Research ethics committees are the importance of the interaction between well established but clinical ethics committees caregives, patient and family. Historical and are a newer concept. In 1996 the UK had 3 Abstract number: 236 systematical research showed promising clinical ethics committees (CECs). By 2003 this Presentation type: Poster insights in the ancient ars moriendi tradition, had risen to 60, all based in National Health Poster number: P129 and the possibility of a connection with ethics. Service (NHS) hospitals. The St Christopher’s [Conclusion] On the basis of the practice of Hospice Clinical Ethics Committee Palliative Terminal sedation in the Netherlands: daily care in nursing homes, the ancient ars care poses many ethical problems and is under practice and ethics moriendi tradition can be rephrased as a increasing public scrutiny regarding issues such practical three layer model which enables as sedation, rehydration and euthanasia. In R.P.B. Reuzel, Dept. of Medical Technology identifying and dealing with the ethical, response St Christopher’s Hospice set up the Assessment, Nijmegen, NETHERLANDS, B.J.P. spiritual and religious dimension of five first hospice based CEC in 2003. The St Crul, University Medical Center Nijmegen, important themes that present themselves at Christopher’s CEC aims to: · Provide guidance to Nijmegen, NETHERLANDS the end of life: (1) autonomy and the self (on

50 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

the basis of P. Ricoeurs idea of life story); (2) because they are considered as the legal home causes considerable controversy. A critical review activity and passivity of treatment in the of the person who is a candidate to suicide. The of the clinical studies shows that in-depth terminal phase; (3) attachment and the situation is different in hospitals since these knowledge of prevalence and practice is still relations with significant others; (4) guilt and institutions provide care and should thus lacking. Aim: By clarifying the different aspects life-balance; and (5) the quest for life’s meaning protect life. In addition, the hospital is not the of the practice of sedation in Flemish palliative and trust. Central to this model is the concept legal home of patients. Suicide is therefore not care units and thus providing much needed in- ‘inner space’ as a metaphor for an attitude that provided in these institutions. However, as depth knowledge, this large scale multi-centre helps dealing with emotions, as relevant for the geriatricians, we have to face many demands for study (2002–2005) wants to make a significant, interaction between caregivers, patient and death from our patients and a few of these will research-based contribution to the international family. persist despite good symptom management discussion on sedation. Methodology: This leading the general care situation to a cul-de- study is based on a prospective, longitudinal

sac. To illustrate this, we describe 2 different design and is performed in 12 Flemish palliative APRIL 8 FRIDAY Abstract number: 238 cases which occurred in our hospital and ended care units. Samples consist of 50 consecutive Presentation type: Poster by a suicide at home on the day of the hospital patients admitted to each palliative care unit Poster number: P131 discharge. The first case remained unclear and who have given written informed consent (n = resulted in great frustration of the 400). Information is gathered with regard to A guideline for palliative sedation multidisciplinary team facing an uncompleted medication intake, food and fluid intake, story. The second case was much better defined demographics, level of consciousness, symptom Alexander De Graeff, Medical Oncology, and discussed very clearly with the patient and prevalence and distress, functional status, type of Utrecht, NETHERLANDS, Sicco Verhagen, all the carers. The active support of the sedation, reasons for sedation and information Comprehensive Cancer Care Centre, Utrecht, institutional Ethic Clinical Council was on the decision making process with regard to NETHERLANDS, Ginette Hesselmann, available. The procedure provided respect for sedation. Instruments used are the M-ESAS, PPS University Medical Centre Utrecht, Utrecht, everyone involved with the patient including and GCS. Data gathering (thrice a week) started NETHERLANDS the patient herself and a follow-up-meeting was at the day of admission and stopped at death or organized to give a proper end to this difficult discharge. Patients are stratified according to Background: Palliative sedation is increasingly story. In conclusion, the charge of a patient who functional status, level of consciousness, an issue in palliative care. Sedation is estimated requests suicide assistance is not an easy demographics and type of sedation. Results: to be used in 12% of all patients dying in The situation and requires open mind and trust in Profiles of patients admitted to the Flemish Netherlands. We developed a guideline for between the carers. In addition, external palliative care units are described and differences palliative sedation, based on the literature and professional help may be useful. These between sedated and non-sedated patients are on our experience in a regional palliative care precautions are a prerequisite to maintain the presented and discussed. Results will be availabe consultation team. Definition used: Palliative dialogue with the patient, to avoid a scission in March 2005. Conclusion: Large-scale sedation is the intentional lowering of the care team and to continue to work together interdisciplinary & multi-centre studies can lead consciousness of a patient in the last phase of whether the patient returns home to commit to a more correct understanding of the practice life by means of the administration of sedatives, suicide or not. of palliative sedation and help to clarify a with the aim to relieve severe suffering. number of controversial issues with regard to Palliative sedation may vary from slight to deep. palliative sedation. Conditions: 1) The presence of refractory Abstract number: 240 symptoms, defined as symptoms which cannot Presentation type: Poster be treated adequately by standard treatment due Poster number: P133 Abstract number: 242 to lack of efficacy and/or intolerable side- Presentation type: Poster effects, 2) Sufficient expertise and consensus of Reanimation yes or no Poster number: P135 the team involved, 3) In case of deep sedation: life expectancy <1 week, and 4) Informed Ankica Prugovecki, Zagreb, CROATIA-HRVATSKA Demands for euthanasia and suicide consent of the patient or proxy. Management: assistance (E/SA). A prospective study in Sedation should be proportional, i.e. lowering XY 72 years old, female Medical History ca. palliative care and geriatric units of consciousness to the degree necessary to ovaries since 2000. 2003. Anus preternatural relieve the refractory symptom(s). Sedation is due to tm. metastases. Th. Tramadol retard 100 Karine Moynier, CESCO Rehabilitation and usually given continuously until death, but mg twice a day, sedative Palliative care not geriatrics department, Collonge-Bellerive, temporary or intermittent sedation may be available. Social anamnesis widow lives alone in SWITZERLAND, Catherine Weber, Hôpitaux considered in specific situations. Midazolam is comfortable flat. She has one daughter, no universitaires de Genève, Genève, the agent of choice. Depending on friends and relatives in town, no religion. One SWITZERLAND, Phuc Duong, Hôpitaux circumstances, a bolus injection of 5–10 mg sc morning nurse has found her unconscious. universitaires de Genève, Genève, is given, followed by 1–2,5 mg/hr sc, to be Over the night she has taken twelve tablets of SWITZERLAND, Catherine Falconnet, Hôpitaux doubled every 1–2 hrs, if necessary. In case of tramadol retard and left goodbyes letter. Nurse universitaires de Genève, Genève, lack of effect with a dose of 20 mg/hr, called the daughter and daughter called the EM. SWITZERLAND, Gilbert Zulian, Hôpitaux levomepromazine 4–8 mg/hr is added. In After psychical examination and consultation universitaires de Genève, Genève, refractory cases, sedation with barbiturates or with the daughter EM doctor left the patience at SWITZERLAND propofol may be considered. If deep sedation is home. Patience died few hours later at home. performed, parenteral fluids should be EM doctor initiated the discussion with her In countries like The Netherlands, euthanasia discontinued. Adequate documentation of the colleagues in EM center which ended up with has now been legalized under strict conditions decision making process is essential. the written question Was the doctor wrong? 29 whereas in others like Switzerland assisted Conclusion: We have been using the guideline EM doctors participated and the result were: Yes suicide will not be prosecuted. In every in our team for the past two years. Although we 3 No 25 No answer 1 In conclusion: We should circumstances, requests for E/SA should be the have not evaluated it formally, it performs well learn to stop reanimation terminally ill patients result of a process involving the patient in our consultations. and to allowed them to die of their illness him/herself in the course of either a disease or providing the palliative care for them. in front of great suffering. However and according to our daily experience, this is not Abstract number: 239 always the case. We thus conducted a Presentation type: Poster Abstract number: 241 prospective survey in order to quantify and Poster number: P132 Presentation type: Poster qualify these requests made in our palliative Poster number: P134 and geriatric 104 beds academic teaching Assisted-suicide demand from hospital during a period of 6 months. hospitalized geriatric patients. Symptom experience and symptom Approximately 800 patients are admitted each management in palliative care units: what year, 300 among them will eventually die. Karine Moynier, CESCO. Rehabilitation and is the role of palliative sedation? Personal data of the patient, primary disease geriatrics department, Collonge-Bellerive, and co-morbidities as well as global symptom SWITZERLAND, Gilbert Zulian, Hôpitaux Patricia Claessens, Centre For Biomedical Ethics evaluation were recorded. In addition, universitaires de Genève, Collonge-Bellerive, And Law, Leuven, BELGIUM, Kristel Marquet, notification of the person who has asked for SWITZERLAND Catholic University, Leuven, BELGIUM, Johan E/SA and of the person who has received the Menten, University Hospitals Leuven, Leuven, demand together with details and motivations In Switzerland, the law does not prosecute BELGIUM, Paul Schotsmans, Catholic of the demand were also recorded. Persistence someone giving personal assistance to another University, Leuven, BELGIUM, Broeckaert Bert, or absence of the demand at one month and person who commits suicide if there are no Catholic University Leuven, Leuven, BELGIUM final issue will be reported. Preliminary results selfish motivation. This procedure appears show that demands for E/SA in the context of a possible at home and recently it has been Background: Though necessary to control specialized hospital come from more people accepted to occur in willing nursing homes certain refractory symptoms, palliative sedation than expected. Indeed the patient, but the

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 51 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

spouse and next-of-kin, the treating private An interdisciplinary, bicentric research and concepts of ethical pluralism in a secular physician and other people demand E/SA for a consultation (sub)department on ethical, legal, society are not sufficiently observed by the given patient who may not be aware of the historical and didactical issues in medicine is chambers’ exclusive notion of “the request. Any member of the multidisciplinary established at the university hospital of physician’s ethos” [2, 3]. team may be selected to receive the request. In Schleswig-Holstein, Germany. This is affiliated ● The statement, that the assessment of conclusion, demands for E/SA sometimes to one of the departments for anaesthesiology, therapeutic and diagnostic interventions appear in our practice as the result of requests owing to the specific importance and the broad must in no circumstance be subject of made by other person than the patient, spectrum of this clinical ‘intersection econommic considerations is not realistic and including health carers. This reality has to be discipline’. Empirical and conceptual research contradicts ethical principles of the allocation accepted as such and we have now to on ethical and legal key-issues was carried out, of scarce resources [2]. understand the underlying reasons for these which significantly influenced ongoing For these reasons, another revision of these demands and learn how to deal with them in a discussions on reforming professional guidelines will soon be inevitable. societal perspective. guidelines and national legislation in Germany. References On the clinical field, several hundred 1. “Grundsätze der Bundesärztekammer zur ärztlichen consultations have been carried out. Education Sterbebegleitung” Deutsches Ärzteblatt (DÄBl), 101: B-1076 Abstract number: 243 programs on ethical, legal and palliative care ff; 2. M. Strätling, U. Fieber, B. Sedemund-Adib, P. Presentation type: Poster issues were implemented and an Schmucker; Mittelbare Folgen der BGH- Poster number: P136 Sterbehilfeentscheidung zum Lübecker Fall” für das interdisciplinary team was established for Deutsche Medizin- und Betreuungsrecht - Eine casework. Methodology: We provide an empiric interdisziplinäre Analyse des weiteren Diskussions- und Evaluation of the use of terminal sedation survey on the over all incidences of the Regelungsbedarfs; MedR, 22: 433–439. 3. Diskussion: on a Dutch unit for palliative care inquiries for consultation, the persons and Grundsätze der Bundesärztekammer zur ärztlichen professionals who seek advice, the issues on Sterbebegleitung, Deutsches Ärzteblatt, 101: A 2237–2241. Lia Van Zuylen, Medical Oncology, Rotterdam, which consultation is most frequently asked for, NETHERLANDS, Hetty Van Veluw, Erasmus MC- different motives for seeking consultation, Daniel den Hoed Cancer Center, Rotterdam, indicators for its success and acceptance and Abstract number: 246 Paul J. Lieverse, Erasmus MC-Daniel den Hoed finally the inevitable limits of CES. Results: We Presentation type: Poster Cancer Center, Rotterdam, Marjolein Bannink, suggest that the standard of a fully trained Poster number: P139 Erasmus MC-Daniel den Hoed Cancer Center, medical consultant (preferably of one of the Rotterdam, Carin C.D. Van Der Rijt, Erasmus mayor clinical key-disciplines) is the most Ethical considerations of Slovene nurses MC-Daniel den Hoed Cancer Center, Rotterdam important education requirement for entry into in nursing the dying the role of an ‘ethics consultant’. Continuing Introduction: Terminal sedation (TS) is a subject education on ethical and legal key-issues and Branka Cerv, Ljubljana, SLOVENIA, Maja of national debate in the Netherlands. We the methodological spectrum of palliative care Klancnik Gruden, University Medical Centre, evaluated the use of TS on the Palliative Care is also essential. Other important tools for Ljubljana, Ljubljana, SLOVENIA and Symptom Control Unit over the past 3 practical needs are clear ‘guidelines’ or years. Method: In 2001 the Liverpool Care transparent legislation. Concerning the third Background: This presentation is a part of the Pathway for the dying phase (LCP) was mayor alternative of CES, the ‘classical’ Clinical the research conducted among the Slovene introduced on the Unit as an instrument to Ethics Committees, we do see increasing nurses in the year 2003 under the Nurse structure and evaluate the care in this final empiric data and conceptual reasons to association of Ljubljana, named Nursing in the phase. Section one, initial assessment, and question their effectiveness. Reference: M. light of ethics. Since our educational and section two, ongoing assessment, of the LCP Strätling, B. Sedemund-Adib, P. Schmucker healthcare systems aren’t familiar with the were studied on different items related to TS. (2004); Klinische Ethik-Komitees in palliative care, nurses are faceing different Results: Between October 2001 and October Deutschland – Vom Ende einer wohlmeinenden ethical problems in nursing the dying. Aim: The 2004 122 patients died, 83 (68%) on the LCP. Of Illusion; BtPRAX 2004: 176 (Issue 5/2004). researche aimed to present the nurses’ opinion these, 45 patients (54%) died after a period of of some statements which are ethicaly TS. The median age was 57 (range 27–89) years, problematic. Method: The questionaires were 22 males and 23 females. All patients had a Abstract number: 245 sent to 2500 Slovene nurses. The total number diagnosis of cancer and were on opioids before Presentation type: Poster of 488 of them espressed their opinion about TS was started. In 42% there was one refractory Poster number: P138 six statements regarding ethical problems in symptom, e.g. pain, dyspnoea or delirium; the nursing the dying. SPSS 11.5 program was used remainder had two or three intractable The revised guidelines of the German for statistical analysis. Findings: Although the symptoms. In most cases the decision to start TS Chamber of Physicians on decisions to majority of nurses think that they would like to was made during office-hours by the forgo life-sustaining therapy: Why yet know about the patients’ wishes for the care multidisciplinary team (91%) and with the another revision is unavoidable they could provide for them and that the dying informed consent of the patient and/or patients don’t want somebody else to make relatives. The median number of hours between Meinolfus Strätling, Klinik für Anaesthesiologie, decisions instead of them, they would defend starting TS and death was 21 (range 2–114) hrs. Lübeck, GERMANY, Peter Schmucker, the family position of non disclosure of a bad Midazolam was used for sedation in 91% of the Universitätsklinikum Schleswig-Holstein, news to the dying patient and they would patients with a median starting dose of 2 (range Lübeck, GERMANY continue with the i.v. infusion in spite of the 1–10) mg/h after a median bolus of 3 (range patient’s wish to stop with it. One third of 1–10) mg. A second sedative agent, mostly Last year the German Chamber of Physicians nurses think that the dying patients want to propofol, was needed in 26% of the patients. issued a revised version of its national know that they are dying, one third think the Conclusion: On this palliative care unit a guidelines on decisions to forgo life-sustaining opposite and the rest of them are undecided. substantial part of the dying patients died after therapy (DFLST) [1]. These have been criticised Conclusions: The way that Slovene nurses are a period of TS by midazolam because of for failing to meet a variety of practical, legal expressing their opinion about ethical problems intractable symptoms. It is possible to anticipate and ethical requirements, which are of special in nursing the dying shows the need for these in the multidisciplinary team on the decision to importance for palliative care [2, 3]: problems to be addressed through educational start TS. ● Unlike the statements of e.g. its anglo- system, public and professional discussion and american counterparts [2], reflecting the probable other changes. results of international research and the Abstract number: 244 present “state of the art” in palliative care on Presentation type: Poster these issues, the chambers’ guidelines do not Abstract number: 247 Poster number: P137 provide sufficently clear statements on Presentation type: Poster artificial nutrition (tube feeding) and its Poster number: P140 Establishing a clinical Ethics Consultation serious limitations with terminal patients, Service (CES) and research department in specifically with severe dementia and Terminal sedation is seldom necessary anaesthesia and palliative care irreversible coma [2, 3]. Medically even in a palliative bed unit problematic are also its incomplete criteria for Meinolfus Strätling, Klinik für Anaesthesiologie, forgoing medical treatment in neonatal and Jan Henrik Rosland, Sunniva Hospice, Bergen, Lübeck, GERMANY, Beate Sedemund-Adib, paediatric care [2]. NORWAY, Sebastian von Hofacker, Sunniva Universitätsklinikum Schleswig-Holstein, ● Several statements of the chamber on the Hospice, Bergen, NORWAY, Jorunn Fjeldheim, Campus Lübeck., Lübeck, GERMANY, Volker legal and ethical standards to be adhered to in Sunniva Hospice, Bergen, NORWAY Edwin Scharf, Universitätsklinikum Schleswig- surrogate decision making in health care and Holstein, Campus Kiel., Kiel, GERMANY, Peter towards the end of life are at least Sedative and analgesic drugs given during the Schmucker, Universitätsklinikum Schleswig- incomprehensive [2, 3]. last 24 hours of life have been registered for all Holstein, Campus Lübeck., Lübeck, GERMANY ● Various moral–philosophical, historical, patients who died in our palliative bedunit empirical, political and socio-cultural during the last two years. From january 2003 to

52 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

october 2004 71 patient (43%) died of advanced Abstract number: 249 these certificates a mail questionnaire about cancer in our palliative unit, mean age 60 Presentation type: Poster possible ELDs. Results: We received 14,628 (28–92) years. 12 patients did not have any need Poster number: P142 completed questionnaires with response rates for opioids or sedatives. 36 patients received between 75% (N) and 59% (B). Use of life- morphine subcutaneously on a regular basis for Euthanasia and end-of-life decisions: terminating drugs on patient’s explicit request the last 24 hrs. 10 of these patients also got medical literature and public debate occurred in 0.31% (0.14–0.58) of all deaths in B, hyoscine. 27 patients got a combination of in Italy 0.14% (0.04–0.35) in D, 2.8% (2.38–3.28) in N, morphine and midazolam, of these 6 got more and 0.63% (0.39–0.96) in CH. For EUTH in B, D than 1 mg/h midazolam. Two patients had a Claudio Ritossa, Palliative Care ASL 5, Rivalta and CH physician predominantly used opioids need for more than 3 mg midazolam/h for up (Torino), ITALY, Eugenia Malinverni, Luce per la (mostly parenterally), often combined with to 10 hrs. None were heavily sedated and Vita onlus, Palliative Home care, Torino, ITALY other CNS drugs. In N they used barbiturates

oxygen saturation was considered satisfactory in (mostly IV) combined with muscle relaxants in APRIL 8 FRIDAY all patients. We conclude that with a skillful Background: Data regarding medical opinions 71% of the EUTH-cases, opioids in 14% (half of combination of analgesics and small doses of about euthanasia and end-of-life decisions in them as only drug), and only barbiturates in benzodiazepines most cancer patients can be Italy are scarce and controversial. The aim of 8%. PAS with self-administered drugs was rare helped to die peacefully, making a positive last this study is to investigate the state of the debate in B en D (1 and 3 cases). In 22 of the 25 PAS- memory for their nearest family. among medical community and public cases in N, oral barbiturates were used (with IV opinion. Methods: We revised medical articles muscle relaxants added in 4 cases). In CH only indexed in Medline in the last 5 years regarding oral barbiturates were used in 7 of the 9 PAS- Abstract number: 248 the opinion of Italian doctors and their end-of- cases. Conclusions: Only in N, where Presentation type: Poster life decision-making practices. We also euthanasia was regulated, effective procedures Poster number: P141 performed a research among Italian websites in for drug administration in EUTH were used. order to explore the present state of public PAS, which was extremely rare in countries Terminal sedation in medical oncology debate about euthanasia and end-of-life without a legal framework, was most often practices. Findings: Medline research resulted in performed with oral barbiturates, but only in Jaime Sanz Ortiz, Servicio de Oncologia y 34 articles (key words: euthanasia, end-of-life, the N with a backup of muscle relaxants. Cuidados Paliativos, Santander, SPAIN, Italy, Italian doctors), 3 of them are European Almudena García Castaño, Medical Oncology studies conducted in different countries, 5 of Dept. Hospital Universitario M. Valdecilla. them are in Italian. A vaste majority of doctors Abstract number: 251 Cantabria University, Santander, SPAIN, Mª agree with statements consistent with Presentation type: Poster Victoria Rodríguez-Coto, Home Palliative Care preserving life, however relevant differences can Poster number: P144 Team. Hospital Universitario M. Valdecilla. be found among different specialties. In one Cantabria University, Santander, SPAIN study only 8% of doctors felt that do-not- Comparison of experience on euthanasia resuscitate order should be applied in intensive between two medical societies Background. It is define as the administration of care setting. while in palliative care setting 32% drugs on purpose to get relieve, unachievable by of doctors interviewed thought that under Hristos Tsokantaridis Drama, GREECE, C. other measures, of the physic and/or certain conditions even euthanasia might be Tsokantaridis, E Nagy, K Alexopoulou, A Tsikali, psychological suffering, by induction of ethically ‘correct’. The WEB search found D Kosmidis, K Kopalidou, E Mustheniotou unconscious that look set irreversible in a 80,800 Italian web pages regarding euthanasia General Hospital of Kavala, Greece patient whose death is near due to illness, with or end-of-life decisions, and in particular several their consent explicit, implicit or delegate. professional and public forum. Conclusion: AIM: During the past decade the debate about Objectives. 1) Analyse the incidence of terminal There is a relevant difference between the euthanasia and assisted suicide has the potential sedation during one year in a medical integral consistency of medical literature and the real to polarize our society.We have compared the oncology unit in a teaching hospital with debate among public opinion about these experience on euthanasia between members of assistant home care included. 2) Identify the themes. Furthermore most debates are Drama Medical Society (D.M.S.) in Greece and refractory symptom. 3) Survival time from conducted on media and are characterized by Physicians from Michigan State in U.S.A. sedation to death, 4) Drugs that has been given emotional and ideological positions. Further (P.M.S.) METHODS: The D. Doukas et al. to induce sedation. Design. Descriptive studies regarding practices of doctors and nurses questionnaire was mailed with self-addressed retrospective study of incidence terminal are requested. We planned a study in North envelopes to 175 D.M.S. members and to 250 sedation the inpatients and outpatients from 1 Italy which involves a large sample of doctors P.M.S. In our study we compared the answers on January 2002 to 1 January 2003. All of patients and nurses, the data of which will be available 10 items from the second part of the were asked about that in advance and they were by the date of the congress. questionnaire. Respondents reported about agree with this decisions. Results. 1) 365 their experience with passive euthanasia, patients were death in 2003 year. 176 (48,3%) assisted suicide and active euthanasia and they dying at home and 189 (51,7%) in hospital Abstract number: 250 answered on a 3-point scale. We used SPSS v.11 ward. 141 (41%) with refractory symptoms were Presentation type: Poster package and applied chi square (x2). Data were sedate. 64 (34%) were sedate at home and 82 Poster number: P143 expressed as mean ± sd. P< 0,05 was considered (47%) in hospital ward. 2) Refractory symptoms statistically significant. RESULTS: The mean age were: 40% dyspnea, 36% pain, 31% confusion DRUGS USED IN EUTHANASIA AND of D.M.S. members was 46,84 years and 90% estate (delirium) , 26% anxiety terminal, 13% PHYSICIAN-ASSISTED SUICIDE IN 4 were men, and the mean age of M.S.M. were 49 digestive disorders (vomiting and intestinal EUROPEAN COUNTRIES years and 83% were men. The response rate of obstruction). 3) Median time from sedation to D.M.S. members was 29,14% (n=51) and the death was 1,9 days (1 to 5). 4) Drugs use were: Johan Bilsen, Medical Sociology and Health rate of P.M.S. members was 61,6% (n=154) 80% midazolan, 75% morphine, 10% Sciences; Research group End-of-Life Care, (P0,05). CONCLUSIONS: 1. The majority of the haloperidol, 2% rohipnol. Propofol and Brussels, BELGIUM, Agnes van der Heide, D.M.S. members in relation to P.M.S. members fenobarbital were no necessary this year. Both Erasmus University Medical Centre Rotterdam, is against passive euthanasia. 2. No significant are indicated in patients refractory to Rotterdam, NETHERLANDS, Freddy Mortier, difference was noted in most of the answers benzodiacepines. We are used in exceptionally Ghent University, Ghent, BELGIUM, Michael about Physician-assisted death and active occasions. Conclusion. 1) Terminal sedation is Norup, University of Copenhagen, euthanasia. 3. Religious conviction may play a indicated in 35–41% of patients at the end of Copenhagen, DENMARK, Eugenio Paci, Centre powerful role in euthanasia. the life in medical oncology department. 2) The for Study and Prevention of Cancer, Florence, most frequent refractory symptoms are ITALY suffocation, pain, delirium, anxiety terminal and digestive disorders. 3) The survival time Background: An epidemiological study of 2001 from terminal sedation is short. 4) Midazolan about medical end-of-life decisions (ELDs) in and morphine are the drugs more useful alone Belgium (B), Denmark (D), Italy (I), the or in combination. 5) The terminal sedation Netherlands (N), Sweden (Se) and Switzerland allow us make comfortable to the last trip of the (CH) revealed a substantial incidence of life. euthanasia (EUTH) and physician-assisted suicide (PAS), except in I and Se. Empirical data about the clinical practices in these decisions are scarce. Objectives: To describe and compare the drugs used in these practices in B, D, N and CH. Methods: We took a representative sample from the official death certificates (all arisen between June 2001 and Febr 2002) in each country, and sent the physicians who signed

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 53 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 252 disease? Terminal sedation, it may be hastened death of the patient. This process will Presentation type: Poster considered a good compromise? We will facilitate team consensus building where there Poster number: P145 conclude with some acceptable solutions, based will be disagreement about how to proceed. on Jewish thinking, in facing terminal illness. Method: After reviewing the literature involving Implementation of ethical case ethical principles guiding practice and reviewing conferences in the palliative care unit of all existing protocols, an iterative process was Nuremberg hospital: First experiences Abstract number: 254 used to test and revise a model to guide Presentation type: Poster interdisciplinary teams when confronted with Gerda Hofmann-Wackersreuther, 5. Med. Poster number: P148 ethical dilemmas. Examples of these dilemmas Klinik, Palliative Care Unit, Nürnberg, include requests for withdrawal of ventilator GERMANY, Tobias Schertlin, see above Incidence, methods and outcome of support or artificial nutrition after chronic GERMANY, Martin Wilhelm, see above palliative sedation before publication of a dependence, requests for sedation due to GERMANY specific guideline in the Netherlands intractable suffering, suicidal ideation or requests for physician assisted suicide, and In 1999 a differentiated ethic project started in Constant Verhagen, Medical Oncology/ questions of abuse or neglect. Results: Through the hospital Nuremberg. First the ethical codex Palliative Care Consultancy Team, Nijmegen, case examples, we will illustrate: 1) The process was defined that guaranteed the dignity of the NETHERLANDS, Eveline Cloin, University to guide team members through these ethical patient during his whole stay in hospital. One Hospital st Radboud, Nijmegen, dilemmas. This model includes four phases: part of the project was to install clinical ethic NETHERLANDS, Sefanya Achterberg, University planning, assessment, intervention, and consultation with the objective to sensitize the Hospital st Radboud, Nijmegen, implementation. 2) Clear definitions of ethical staff to ethical issues in clinical practice and to NETHERLANDS, Marjo Gribling, Palliative Care principles guiding practice and how these are integrate ethical thinking into the personal Consultancy Team, Nijmegen, NETHERLANDS, integrated into the process. 3) How to integrate qualification of each team member. From Jeroen Fokke, Palliative Care Consultancy Team, appropriate assessment and measurement tools October 2003 until February 2004 a group of 16 Nijmegen, NETHERLANDS into the process. Conclusions: This model members got a special training in ethics and ultimately leads to a comprehensive communication to prepare them as clinical End of life decisions in palliative care varies interdisciplinary plan of care that effectively ethic consultants. In January 2004 ethical case from harmless treatments to potential toxic addresses the dilemma in a way that is ethically conferences started on a regular basis every 6 regimens and even the delivery of drugs sound and minimizes risk and liability. This weeks in various interested clinical units. Since shortening life. Confusion may occur between creates the highest likelihood of establishing January 2004 in our palliative care unit 7 ethical good clinical practise and ambiguity of safety and acceptability for patients, families, case conferences have taken place. The intentions leading to hastening death. and staff. consultants were a nurse, a physician and a Euthanasia has been legislated in the pastor. The reasons for triggering an ethical case Netherlands (3.6% of all deaths). More patients conference were different. In 4 cases the team may encounter unacceptable refractory Abstract number: 256 asked for help in ethical issues like patient’s symptoms. Palliative sedation (PS) for Presentation type: Poster autonomy and quality of life, the request for intolerable suffering seems to be the only Poster number: P150 assistance in suicide or for active euthanasia. In acceptable alternative. Incidence, indications 2 cases the reasons for ethical case conferences and methods vary widely suggesting differences A bereavement service in light of the U.K. were conflicts and distress in handling a very in definitions and attitudes towards PS. This supportive and palliative care strategy: complex medical, psychological, and social forced the palliative care consultancy team to where do we stand? situation with ‘difficult’ patients or family develop a guideline. We report a retrospective members and lack of a documented patient’s study of all patients seen before publication of Heino Hugel, Palliative Medicine, Liverpool L25 will. And one case was a therapy limiting this guideline. From march 1999 until may 8QA, GREAT BRITAIN, Heather Wiseman, decision with a presumable patient’s will. 2003, all 509 successive patient records have HSPCT, University Hospital Aintree, Liverpool, Ethical conferences represent further education been reviewed. 248 files contained sufficient GREAT BRITAIN, S Oakes, HSPCT, University for the staff in ethical issues and data to reconstruct end of life decisions. 149 Hospital Aintree, Liverpool, GREAT BRITAIN, A communication. The ability to perceive and patients were male; mean age was 63 (5–93) Tann, Community Palliative Care Team, reflect moral questions is improved. In complex years; 221 patients had a malignant disease and Knowsley, Liverpool, GREAT BRITAIN, P Davies, and difficult cases ethical conferences are 136 (55%) patients died at home. Legal Community Palliative Care Team, Knowsley, helpful in elaborating and separating the euthanasia (LE) was performed in 13 (5%), 42 Liverpool, GREAT BRITAIN different aspects of a case: medical, social, (17%) died after PS and 23 (9%) patients died economical, psychological, ethical, legal under toxic medication (TM) without adequate Aims: To examine current service provision for aspects. Thus decisions become transparent for indication that intention was either PS or LE. bereaved carers in different primary care and all persons concerned. The indication for true PS was intolerable pain specialist palliative care settings within in 13 (31%), other physical complaints in 16 Merseyside/U.K. Method: A survey was (38%) and psychosocial in 8 (19%) cases. conducted as part of the Merseyside and Abstract number: 253 Survival after start of PS was less than 24 hours Cheshire Palliative Care Network Audit Group Presentation type: Poster in 32 (76%), up to 3 days in 5 (12%) and more Programme. 29 out of 31 District nurse team Poster number: P147 than 3 days in 3 (7%) cases. In PS 27 (64%) leaders from two primary care trusts (PCTs) patients were treated with adequate medication within Merseyside completed a telephone Euthanasia, Assisted Suicide, Terminal for sedation. Only 9 (39%) of the 23 patients questionnaire. All (n=5) Community Palliative Sedation – Are They Compatible with who died under TM were sedated with adequate Care Nurse Specialists (CPCNS) from the same Jewish Culture? medication; many (11 or 48%) were intoxicated PCTs and Bereavement Service Leads of a day by high doses of opioids. Nevertheless survival hospice, an in-patient hospice and a hospital Michaela Bercovitch, Oncological Hospice, data in TM was not different from PS, the advisory team completed a postal Shoham, ISRAEL, Adunsky Abraham, Sheba indication seemed to be more often questionnaire. Questions related to initial Medical Center, Ramat Ha Sharon, ISRAEL psychosocial (10 or 43%) in TM. These data assessment, immediate post bereavement underlines the necessity of guidelines for PS. support, ongoing support, onward referral, The past decade has seen an abundance of Follow up data after publication of the provider education and service uptake. Results: literature on death and dying, with the issues of guideline will be available during the congress. None of the district nurses (DNs) used a euthanasia and physician assisted suicide being bereavement assessment tool, but all provided among the main issues discussed. The issue of immediate post death follow-up. None made ‘mercy killing’ has been addressed from a Abstract number: 255 contact at 8–12 weeks post bereavement. Christian perspective, but only little attention Presentation type: Poster Onward referrals were primarily to general was devoted to the needs of the terminally ill Poster number: P149 practitioners (GPs) (n= 21) and CPCNS (n=21). patient who is Jewish. Although the Bible 24 had training in bereavement support. CPCNs recounts the story of the first murder early on, A Model to Guide Difficult Decision- had a higher level of training in bereavement Judaism is a life-affirming religion. In the Making: Responding to Ethical Dilemmas support than DNs and 80% said they were Jewish religion life is a supreme value, and with the Tension of Hastened Death involved with complex bereavement problems. death does not represent the end of being. Our All specialist services made written contact with lecture will present: 1. Differences between Gary Buckholz, Center for Palliative Studies, San bereaved carers at 8–12 weeks post- Christian and Jewish spirituality regarding Diego, U. STATES, Frank Ferris, San Diego bereavement. Uptake of some bereavement death in general and ‘good death’ in particular, Hospice & Palliative Care, San Diego, U. STATES services was below 1% of total number of 2. Jewish thinking on euthanasia, 3. Attitudes of deaths per year. Memorial Services were offered Jewish physicians toward ‘mercy killing’ and Objective: To provide an effective model to by both hospices and were attended by 150–200 physician-assisted suicide – is the physician the guide interdisciplinary teams when confronted people. Conclusions: DNs provided immediate right address for killing in case of terminal with ethical dilemmas where the tension is bereavement support, but follow-up in the

54 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

critical 8–12 week period post bereavement was Abstract number: 259 that described caregivers’ experiences and lacking. GPs are central to bereavement care. Presentation type: Poster unmet needs, all of which reflected findings Memorial services may provide a good basis to Poster number: P153 from the literature review. Caregivers reported initiate bereavement support. Specialist being unprepared for their role; socially isolated bereavement services need to be coordinated Psychosocial Care at St Joseph’s Hospice and many had financial difficulties. However, well to guarantee efficient service provision. some caregivers were able to recognize Jenny Watmore-Eve, Department of Social rewarding aspects. Recommendations to address Work, London, GREAT BRITAIN challenges fell into 4 categories: information Abstract number: 257 and communication issues, financial and Presentation type: Poster The publication “Improving Supportive and employment needs, increased services and Poster number: P151 Palliative Care for Adults with Cancer” (NICE, community recognition. Conclusions: Findings

2004), amongst other things, has highlighted from this project have informed a strategic APRIL 8 FRIDAY Long and winding roads: Stories of grief, the following: · “Psychological distress is national agenda aimed at enhancing the well loss and learning. common among people affected by cancer – being of family caregivers. and – some patients are likely to benefit from Susan Read, Nursing and Midwifery, additional professional intervention”; · “The Staffordshire, GREAT BRITAIN social impact of cancer is considerable – and Abstract number: 261 many patients do not receive a coherent Presentation type: Poster Aim: To focus upon stories of grief and integrated system of social support”; · “Families’ Poster number: P155 associated losses experienced by people with and carers’ needs for support can be particularly intellectual disabilities (ID). Bereaved people profound around the time of diagnosis, at the PALLIATIVE CARE RESPITE AT HOME: with ID have received increasing attention over end of treatment, at recurrence and most A UNIQUE APROACH TO SUPPORTIVE recent years from a variety of interested particularly around the time of death and PALLIATIVE CARE professionals. However there are still many bereavement”. St Joseph’s Hospice, Hackney, individuals who do not receive the psycho- London, has one of the largest hospice based Anita Green, Primary Care, Stockport, GREAT social and emotional support required to departments of social work in the United BRITAIN, Ann Wakefield, The University of healthily accommodate their grief. Consistency Kingdom. In addition to qualifications in social Manchester, Manchester, GREAT BRITAIN of support is variable, resources limited and work, the department has a number of staff access to various and appropriate therapeutic qualified in psychological therapies. This This paper evaluates a local Palliative Care interventions remains difficult and rare. As part presentation describes the structure and Respite at Home Service within the United of a seven-year participatory action research activities of the department and the ways that Kingdom. The service was distinctive, in that it study conducted within a voluntary staff attempt to meet the needs for psychosocial was staffed by a team of unqualified carers with bereavement counselling organisation in support outlined in the NICE guidelines. a special interest in palliation. Although the Staffordshire, England, bereaved clients were Examples are given of the department’s work findings are not meant to be generalisable to invited to tell their stories of their grief journey. in, amongst other activities, enhancing income the wider community, they are considered Method: Biographies and case studies are and preventing poverty, home care planning, worthy of further discussion in order to acceptable methods of gathering complex complex family work, counselling support for communicate good practice. Given the nature information pertaining to social phenomena patients and their families, bereavement work of the setting and subject matter the research for analysis and offer extremely powerful for adults and children, creative writing and art was loosely based on a case study, as this offered insights into sensitive areas. A series of therapy. The challenges of providing the opportunity to explore a single ‘case’ and biographies case studies (N=21) are analysed psychosocial support, evaluating and collect detailed information using deep using a six themes that emerged from a conducting research work in this area are descriptive data. The need to provide a previously conducted literature review. Results explored. comprehensive 24hr service to both patients and conclusions: The results of the biographies wishing to die at home and their informal powerfully illustrate the impact of death and carers is both obvious and real. The use of the normality of the grief experienced and Abstract number: 260 unqualified ‘professional carers’ is in fact demonstrate the inherent challenges that Presentation type: Poster unique within the literature, yet the service people with ID have within this process. Poster number: P154 proved valuable and worthwhile as evidenced by the following comment: ‘to go out of the ‘The hardest thing we have ever done’: house and leave your loved one with someone Abstract number: 258 The social impact of caring for the you know is capable, means so much’ (Partner Presentation type: Poster terminally ill in Australia of a patient). Despite the above, little Poster number: P152 information is documented in the literature Peter Hudson, Centre for Palliative Care and regarding the richness of support such services Bereavement and people with intellectual School of Nursing, Melbourne, AUSTRALIA, provide; in particular details regarding the disabilities: A continuum of support Samar Aoun, Edith Cowan University, Perth, number of visits and the time spent with the AUSTRALIA, Linda Kristjanson, Edith Cowan patient are scant. Yet the service outlined here Susan Read, Nursing and Midwifery, Stoke on University, Perth, AUSTRALIA, David Currow, made a difference to patients’ lives because of Trent, GREAT BRITAIN Flinders University, Adelaide, AUSTRALIA, John its flexibility and lack of medicalisation, Rosenburg, Queensland University of suggesting this type of service is both wanted Aim: The emotional needs of people with Technology, Brisbane, AUSTRALIA and needed by users and professionals alike. intellectual disabilities are often neglected Nevertheless, it is only by undertaking studies (Arthur, 2003), particularly from a bereavement Purpose: Empirical evidence indicates that the of this kind that experience is gained ‘in the perspective. Yet it is recognised that people with role of supporting a dying relative adversely field’. One of the significant findings of the ID do grieve, but, because of the nature of the affects the well-being of many family caregivers. study therefore highlighted the need to intellectual disability itself (and often other Palliative Care Australia (peak body representing recognise that each person’s experience of associated disabilities), they may need Palliative Care in Australia) convened a working caring for someone at the end of life is different. additional help and considerations in order to group to describe unmet family caregiver needs However it is clear that what is required is explore their grief in a meaningful way. This in order to plan strategies to enhance support. individualised care and attention focused positional paper proposes a model that Method: A literature review was undertaken and towards each family member when it is needed describes the continuum of support required to submissions were invited from individuals, most. support people with ID before, during and after families and organisations in one or more of a death. This model is designed to encompass a the following forms: (1) letters or case studies broad range of strategies offered at many describing unpaid caregivers’ stories and different levels. Such strategies range from experiences; (2) descriptions of unpaid general preparation before loss or death caregivers’ needs and the extent to which they (education); portraying loss and death as are being met by government, other institutions natural life events (participation); consistent and the community; (3) policy statements support after death has occurred (facilitation) and/or recommendations; and (4) copies of and the identification for specific help recent reports and published research data. A (therapeutic interventions). Such proactive total of 131 organisations were contacted via responses should help to minimise the need for letter and e-mail and were invited to make a specialist therapeutic interventions. submission. Advertisements were placed in the National newspaper and also circulated through several stakeholder newsletters. Results: 20 family caregivers, 6 volunteers in palliative care and 23 service providers, provided submissions

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 55 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 262 people who have received support from these Abstract number: 265 Presentation type: Poster chaplains. Methods: Organisational case-studies Presentation type: Poster Poster number: P156 have been undertaken at adult bereavement Poster number: P159 services provided by five UK hospices. These The use of volunteer counsellors for services were sampled from a national survey The need for bereavement bereavement support in a study of conducted by the authors (n=247). This paper follow-up in palliative care: family bereavement services in UK hospices draws upon a thematic analysis of semi- members’ perspective structured qualitative interviews conducted David Reid, University of Sheffield, Sheffield, with hospice chaplains (n=5) and bereaved Eva-Carin Olsson-Doherty, Unit of Palliative GREAT BRITAIN, David Field, Department of people (n= 87). Results: Chaplains’ responses to Home Care (LAH), Linköping, SWEDEN, Anna Health Sciences, Leicester, GREAT BRITAIN, diverse faith needs included renaming Milberg, Division of Geriatrics, Faculty of Sheila Payne, University of Sheffield, Sheffield, themselves as ‘spiritual care coordinators’, Health Sciences, Linköping University, GREAT BRITAIN, Marilyn Relf, Education redesigning remembrance services to include Linköping, SWEDEN, Maria Friedrichsen, Dept Centre, Sir Michael Sobell Hosue, Oxford, secular readings, poetry and personal off Welfare and Care-palliative care, Faculty of GREAT BRITAIN reflections and making themselves available to Health Sciences, Linköping University, bereaved people in non-religious settings. Norrköping, SWEDEN, Maria Jakobsson, Aims 1) To identify the nature and extent of Bereaved people with little or no Christian faith Hospital-based home care (LAH Linnea- adult bereavement support offered by UK said Chaplains were approachable, knew them enheten), Vrinnevisjukhuset, Norrköping, hospice and specialist palliative care services. 2) by their first name and were highly satisfied SWEDEN, Maria Olsson, Palliative Advisory To examine the role of paid and voluntary staff with remembrance service content. Team (PRIVO avd 40) Oskarshamn sjukhus, in providing adult bereavement services and to Conclusions: The Chaplains both Oskarshamn, SWEDEN solicit the views and outcomes of bereaved acknowledged and acted to allay negative people who had and had not used these perceptions of their religiosity held by those Palliative care does not end with the death of services. Method Five hospice services were with little or no Christian faith. Some bereaved the patient, according to the definition by selected from respondents to a initial national people appreciated attempts by Chaplains to be WHO. Instead, palliative care includes support postal survey of hospice and SPCS using a range inclusive; some with strong religious beliefs to the family during bereavement. of variables (e.g. their size, organisation and were dissatisfied with the lack of Christian Consequently, many palliative care services geographical location). Two hospices used content. offer specific follow-up procedures for the volunteer counsellors initially recruited from bereaved. The aims of this study were 1) to students completing diploma courses in qualitatively describe the need, according to the counselling, some of whom continued to work Abstract number: 264 bereaved family members, for telephone calls as volunteers after they had completed their Presentation type: Poster and personal meetings made by the palliative course. Twelve counsellors described their work Poster number: P158 care staff; and 2) to make quantifications. The to the researchers in open-ended interviews. study design was cross-sectional and targeted Bereaved people using counsellors talked about FAMILY MOURNING AND NARRATIVE – family members three to nine months after the their experiences either in focus groups (n=11) RELATIONAL APPROACH patient’s death. 240 family members responded or interviews (n= 4). Findings This arrangement (response rate 64%) to a postal questionnaire seemed to work adequately at the smaller Enrico Cazzaniga, Psycology, Milan, ITALY with Likert-type and open-ended questions. The hospice. At the second, substantially larger, responses were analysed with a combined hospice there were sometimes insufficient When a person falls ill with a severe illness that qualitative and quantitative content analysis counsellors to meet the demand for will ultimately lead him/her to die, the ‘whole and descriptive statistics. A preliminary analysis bereavement counselling. A number of family gets sick too’ and with him/her a part of indicated that about half of the family members potential difficulties resulting from depending the family will pass away as well. In the yr 2003 expressed a need for bereavement follow-up. A upon volunteer, especially trainee, counsellors VIDAS has assisted 1,460 incurable people majority favoured a personal meeting, were identified: – The effect of the varying (13,000 in 22 yrs). According to the VIDAS preferable in their own home, with the staff number of counsellors upon the availability of GLOBAL HELP MODEL this number can be member who had had most contact with the bereavement support. – The safety of both multiplied at least 3 or 4 times if we consider patient and the family. The family members client and counsellor. – The potential isolation the family members and the relatives of the wanted to talk about what had happened of volunteer counsellors. – The difficulty of deceased. Our help does not stop when the during the palliative phase (e.g. if the patient coordinating and depending upon volunteers. – patient dies, but continues in accompanying had suffered or not), but also about their Potentially negative attitudes of potential clients the surviving family members in the ‘forced present situation with loneliness. The follow-up to volunteers, who may be seen as less well changes’ called mourning. For all of these procedure had made the family member trained. situations VIDAS offers consultation and experience a feeling of being recognised as a psychological support to the mourning family person with own needs. Furthermore, it had members. We have activated Self-help Groups contributed with feelings of security and also Abstract number: 263 (6 at present). The NRA found its basis on 5 key been valuable in relation to the family Presentation type: Poster words: context: to understand a phenomenon members’ feelings of guilt. The preliminary Poster number: P157 we have to place it in the context in which it findings seem important for designing manifests itself (Bateson). The context builds evidence-based follow-up procedures and for Approaches to offering adult bereavement the reality; systemic: when a person dies it is further development of support to bereaved support by Hospice Chaplains to people of important to offer help to the family in family members in palliative care. diverse faiths in the UK mourning; relationship: people are part of the context that ‘builds the reality’, they enter in a David Reid, Palliative & End-of-Life Care relationship that creates this reality. People in a Abstract number: 266 Research Group, Sheffield, GREAT BRITAIN, relationship ‘co-build’ the reality; Presentation type: Poster David Field, University of Leicester, Leicester, communication: it is useful to consider Poster number: P160 GREAT BRITAIN, Sheila Payne, University of communication as a type of behaviour. This Sheffield, Sheffield, GREAT BRITAIN, Marilyn type of behaviour says something to someone. Teenagers’ use of riprap.org – a website Relf, Education Centre, Sir Michael Sobell In this prospective, we can affirm that resource when a parent has cancer House, Oxford, GREAT BRITAIN communication can either have positive or negative effects on one’s health; narrative: this Hilde Hjelmeland Ahmedzai, Academic Background: Formal adult bereavement support regards everything that narrates one’s own story Palliative Medicine Unit, Sheffield, GREAT in UK hospices is an increasingly specialised and stories belonging to others; it links the BRITAIN, Emma Jarvis, University of Sheffield, activity, for example, with the rise of events; it links some of the facts to the people Sheffield, GREAT BRITAIN, Sam H Ahmedzai, counselling as an appropriate resource for and the relationships with the University of Sheffield, Sheffield, GREAT grieving relatives. This trend has been interlocuter/listeners. The role of the various BRITAIN accompanied by the continued assertion that times of the time is of great value. The task of the UK is becoming a more secular society. the person offering help is to partecipate in the Background: – There is a recognised lack of Hospice Chaplains, long associated with the building of possible stories that permit possible information and support aimed at children provision of spiritual support in hospices, are realities to those who find themselves facing whose parents have cancer – Established expected to offer bereavement support to the difficulties of a loss of a dear one. services mainly deal with bereavement and to a people with little or no Christian faith. Aims: – lesser extent their needs during illness and Report the main strategies for offering towards the end of life – The Internet is a bereavement support to adults with little or no medium commonly used by this age group and Christian faith identified by hospice chaplains. regarded an appropriate tool for providing – Consider the effectiveness of these strategies support. Aims: To investigate the role of riprap by drawing upon the experiences of bereaved as an online resource through which teenagers

56 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

can receive and provide support when a parent Abstract number: 268 (www.brforum.org.uk) provides, amongst other has cancer. Particular focus on its value in Presentation type: Poster things, further helpful information on the acting as a: – Platform for peer support – Tool Poster number: P162 ethics of bereavement research and sources of for professional support. Methods: – Data further information on bereavement research. analysis of statistical logs of website usage – Evaluation of a support group This presentation will provide further Content analysis of discussion forums – intervention for family members during information about the activities of the BRF and Content analysis of case stories submitted by ongoing palliative home care its work in promoting research into teenagers – Content analysis of email bereavement and encouraging the use of a communications between teenagers and Anna Milberg, Section Of Geriatrics, Linkoping, sound evidence base in bereavement service professionals. Results: Data has been gathered SWEDEN, Maria Friedrichsen, Dept of Welfare practice. between June 2003 and September 2004. 35 and Care – palliative care, Faculty of Health

messages have been submitted to the forums Sciences, Linköping University, Linköping, APRIL 8 FRIDAY and 24 users have submitted their own story. 59 SWEDEN, Kristina Rydstrand, Unit of Palliative Abstract number: 270 teenagers have contacted us with queries, Home Care (LAH), University Hospital, Presentation type: Poster varying from simple medical questions to Linköping, SWEDEN, Lena Helander, Poster number: P164 complex psychosocial issues involving anxiety, Rehabilitation Unit in Primary Health Care, anger, guilt, grief, self harm etc. Feedback Linköping, SURINAME Who Cares? – An exploration of the suggests that the case stories are particularly information needs of those caring for the helpful as a tool for peer support. This is Support to family members is essential in terminally ill confirmed by web statistics, showing that the palliative care, but there is limited literature experience section (case stories) is the most concerning interventions during ongoing Matt Loveridge, Community Palliative Care visited section of the website. Data is still being palliative home care. Therefore, support groups Team, London, GREAT BRITAIN collected and updated results will be presented were started for family members of cancer at the congress. Conclusions: As the only patients referred to a palliative home care Providing informal care for a terminally ill website resource in the UK dedicated to support service. The aim of this study was to describe family member has been demonstrated to cause this target group, riprap has proved to be an the family members’ experience of both physical and psychological stress. important platform for providing both peer participation in such support groups. Four Providing information and education has been support and support from professionals in taped-recorded focus groups interviews were suggested as one strategy to alleviate the strain relation to this vulnerable, neglected and often conducted (N=13) and a minor questionnaire that such carers experience. This literature unsupported group of children. was completed by 19 of 22 possible family review on the information needs of family members. The participants had experienced caregivers of terminally ill patients at home increased perception of support and knowledge involved searching the electronic databases: Abstract number: 267 and all would recommend a person in a similar Medline, Cinahl, British Nursing Index and Presentation type: Poster situation to join a support group. Themes that CancerLit. A total of fifty-four articles are Poster number: P161 emerged in the qualitative content analysis considered within the review.Reference is made concerned ‘support facilitates decision to enter to the Macmillan Cancer Relief’s Gold Standard Suffering, care and support in the end of the group’, ‘being in the same phase Framework and in particular the standard life – a next of kin perspective contributes to cohesiveness’, ‘experienced and concerning carer support. The proposals set out listening group leader as a catalyst’, ‘meaningful in this standard are used to demonstrate the Sjur Bjornar Hanssen, Palliative Research Unit, dialogue to solve everyday problems’, practical implications of some of the literatures Oslo, NORWAY, Anneli Sarvimäki, Nordic ‘cohesiveness increases security’, and ‘reflection findings. Social support theory is also School of Public Health, Göthenborg, increases strength’. Support groups for family considered to offer an explanation as to why SWEDEN, Berit Saeteren, The Norwegian members seem to be a valuable contribution information is so important to carers and where Radium Hospital, Oslo, NORWAY during ongoing palliative home care. The it fits with other support needs they may have. findings are discussed in relation to recruitment Five major themes were identified in the Many cancer patients prefer to be cared for at to and ending of support groups. articled considered which were: establishing home the last period of their lives. This is that carers benefit from information, barriers challenging and support from the family and that inhibit carers receiving information, topics from home care the workers is needed. Research Abstract number: 269 that carers consider important, delivery of the relatives’ needs, and how they where Presentation type: Poster methods and variables that may influence what met, can hopefully widen health service Poster number: P163 information is required. The majority of the personnel’s understanding of the next of kin trials that were considered were qualitative in perceptions and experiences. A qualitative study History and Aims of the Bereavemnt nature, some utilised a combination of has been performed in order to describe and Research Forum qualitative and quantitative data and only one analyse the subjective meaning for the quasi-experimental study was identified. As is individual next of kin who had been the main Christina Mason, Department of Research, the case with many reviews conducted in caregiver for their loved one, in home care London, GREAT BRITAIN palliative care there is a lack of what is setting the last month of the patient’s life. All considered to be strong evidence. There is families were supported by the public home The Bereavement Research Forum (BRF) was certainly room for further research to be care. The study is based upon principles of established in 1990 as a small gathering of undertaken in this area and recommendations Grounded Theory. Data were collected by in- researchers aiming to support each other in are made from the gaps that were identified in depth interviews, mainly performed in the their work. Since then membership has grown this review. Health care professionals should be patient’s home. Eight persons; one sister, one as interest in bereavement issues has developed aware of the needs of the carers that they have daughter, three husbands, and three wives were and increasing numbers of bereavement contact with and should continually assess interviewed 2–12 months after their loved one services have been established. The main what information they require. Many of the died of cancer. The Grounded Theory approach purpose of the BRF now is to provide strategies for providing support are was applied for the analysis. None of the opportunities for the discussion, promotion straightforward and could be quickly approached relatives refused to participate in and development of bereavement research by: · incorporated into practice. the interviews. Even though they all felt it had Providing a platform to encourage and facilitate been a challenging task, none of them regretted future research into bereavement · Exploring that they had decided to take care of their loved research issues such as methodology and ethics · Abstract number: 271 one at home. Information related to foreseen Disseminating bereavement research findings Presentation type: Poster symptoms and problems are needed in order to to a wider audience · Promoting the application Poster number: P165 prevent psychological distress and frustration of research into policy and practice. The BRF is for the caregiver. This research is in progress for those currently engaged in research, The Gifts of Grief Workshop and further results will be presented. Key words: planning research, considering research Cancer, quality of life, terminal care, palliation, involvement, considering disseminating Nancee Sobonya, Bereavement, Oakland, and relatives’ experiences. research results, and developing an U. STATES organisational research agenda. The BRF holds three meetings each year. At these meetings The Gifts of Grief is a unique film about the there are in-depth presentations of research possibility of another side of suffering, told results or research in progress during the through the personal and moving stories of a morning, and in the afternoon workshops that special group of people who have embraced are aimed to help those wanting to start a their pain and have found a way to transmute research project and the opportunity to discuss their grief into a greater understanding and their ideas. A National Conference is held every fulfillment of life. We explore the possibility two years. The website of the BRF that grief while very painful, is one of the

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closely guarded keys to true transformation and Abstract number: 273 chaos despite the many practical difficulties joy. Through these compelling interviews, we Presentation type: Poster that arose when death occurred at home. There gain valuable insights from people facing, Poster number: P167 was a mystery that surrounded the significance growing and transforming through grief. The of dates and times at which death occurred. stories of ordinary and extraordinary people, FEELING ALONE IN THE FACE OF THE These details are extremely moving. The including writer, Isabel Allende; Reverend Cecil DISASTER IS COMMON IN PATIENTS phenomenon that is emerging is that that Williams; Zen Monk /Vietnam Veteran, Claude WITH ADVANCED CANCER DISEASE AND people die well because of their own innate AnShin Thomas; filmmaker, Lee Mun Wah THEIR FAMILIES? community strengths and support. At these celebrate and inspire healing and crucial moments, families are hardest at work, transformation. The film invites us to open to Michaela Bercovitch, Oncological Hospice, Tel in grief together. Professionals simply enable pain, learn from loss, and teaches us about the Hashomer, ISRAEL, Rokach Ami, Institute for them at this important and sensitive time to use preciousness of life. the Study and Treatment of Psychosocial Stress, their strengths. From the findings of this study, York University, Department of Psychology, we can focus on this critical time and ensure OBJECTIVES: Toronto, CANADA that optimal care is given in the physical, 1)To identify the physical, emotional and emotional, spiritual and social domain. spiritual affects of death and grief. Psychological distress and changes in patients 2)For participants to identify the resources that and their families may be a serious help them through their losses. complication during the final illness process. Abstract number: 274B 3)For participants to discover for themselves the The diagnostic and the appropriate intervention Presentation type: Poster possibility of true gifts emerging from their may decrease the emotional suffering for all Poster number: P168B own losses. parts involved and may make more easily the family bereavement period. Death is a A Listening Day departure. Departure from all that is familiar Abstract number: 272 and from all those that the dying person has Jean Levy, St. Christopher’s Hospice, London, Presentation type: Poster known in life. Loneliness, which is s common UK, David Oliviere, St. Christopher’s Hospice, Poster number: P166 in life, may be even more prevalent in the London, UK, Celina Leam, St. Christopher’s process of dying. The proposed paper will Hospice, London, UK, Vicky Robinson, St. A Chatroom For German Speaking explore the loneliness experience, how it can Christopher’s Hospice, London, UK Bereaved Adolescents In The Internet: best be faced and coped with by the dying, as www.allesistanders.de well as addressed by those caring for the Aims patient. Ways and techniques with which the St Christopher’s Hospice (SCH) regularly seeks Wilhelm Freiherr von Hornstein, Hospizgruppe medical staff can assist the dying and his or her patients’ and carers’ feedback, using Freiburg e.V., Freiburg, GERMANY, Ulrike Bilger, caretakers to cope with loneliness will be questionnaires and a Users Forum. In July 2004, Hospizgruppe Freiburg e.V., Freiburg, discussed and demonstrated. an innovative Listening Day was held for GERMANY, Nicole Decker, Hospizgruppe bereaved carers around 18 months after patient Freiburg e.V., Freiburg, GERMANY death asking in retrospect if they could see areas Abstract number: 274 for improvement. The hospice movement in the German Presentation type: Poster university city of Freiburg (Hospizgruppe Poster number: P168 Method Freiburg e.V.) established itself as an association The next of kin of all patients who died of benevolents in 1991 looking after terminally Carers’ experiences around the between October 2002 and April 2003 were ill patients and their families. While there are Moment of Death at home invited to the day (n=649). The meeting was mourning groups for adults there is little help held on a Saturday. The agenda for the day was available for children and adolescents. There is Sinéad Donnelly, Palliative Medicine twofold 1) patient care, exploring clinical, an increasing demand to support those young Department, Castletroy, Limerick, IRELAND, psychological, social and spiritual care and people. We started to offer mourning groups for Natasha Michael, Milford Care Centre, hotel services and 2) carers’ experience, various ages and discovered that bereaved Castletroy, Limerick, IRELAND, Cliona including carer support over three phases – adolescents did not like to participate Donnelly, Milford Care Centre, Castletroy, during the patient’s illness, around the time of spontaneously in a group. Therefore we tried to Limerick, IRELAND death, and since death, including views about reach them via internet, a new communication the SCH bereavement service. The participants means frequently and easily used by Palliative care programmes continue to were divided into three groups, each having a adolescents. Besides fora for adults and young demonstrate that enlightened and dedicated facilitator and note taker. A record of all people we started a chatroom in August 2003 care can markedly improve the suffering of comments was produced and presented to the for adolescents (teens, young adults). In this patients and families. The time surrounding the SCH Clinical Governance committee. virtual room they can communicate with each moment of death however, had become other about their losses and griefs. Two increasingly marginalised. The objective was to Results specially trained adults supervise the chat. They study, using qualitative enquiry, the experiences In total 162 people (25%) replied to the participate, counsel and if needed may cut out of families and carers about the events that invitations. There were 23 acceptances, and a an unserious chatter. The chat is open for occurred in the home setting around and at the total of 26 attendees, who were divided into German speakers every Wednesday from 8 to 10 time of death. Those interviewed were asked to three discussion groups. p.m. There are 10–40 live chatters at a given recall and describe the physical scene, the care, Topics raised included information, time. They are frequently complaining that conversations, rituals and reactions of communication and interface between the friends are not sharing their concerns nor individuals around the moment of death itself. hospice and the NHS. Feedback from the coping with their griefs. The teenagers describe Ten families based in the Mid Western region participants about SCH was generally positive, the situation at school as a real dilemma, e.g. of the Republic of Ireland (urban and rural feeling that follow up at this stage was helpful. complaining about concentration difficulties, settings) were identified. Semi-structured sleep disturbances etc. and teachers having little interviews were conducted with the main Discussion understanding and respect for their concerns. caregiver a week to ten days after the patient’s Whilst the numbers are small and this group Although internet seems to be a rather death. The timing of the interviews with its was self-selecting, participants felt it was a anonymous place to meet a high degree of proximity to death was a unique aspect of this worthwhile activity. For SCH some areas of intimacy is happening. It is impressive how study. Trust established between the interviewer need for staff development were identified. For adolescents are dealing with each other in a (who is a doctor) and the families during earlier the specialty it has highlighted some interesting gentle, open and respectfull way. It looks that a meetings allowed for this. The interviews were challenges, namely how we gain the views of traumatic experience like a loss of a dear person audio taped, transcribed and imported into the silent majority and how we can use the may lead to a personal growing and maturing. non-numerical unstructured data indexing Network structures in the NHS to improve the After one year of experience we are encouraged searching and theorising (NUD.IST) for coding transition from NHS to hospice care. by the adolescents to carry on this project. The and content analysis. live chatroom is well accepted and offers new Many, despite the urgency of the moment opportunities and challenges to reach and described death as a non-threatening event. support bereaved young people. There was a strong sense of family and community, as well as a need for proximity and physical contact especially at the moment of death. The presence of rituals was noted in the context of the family’s faith. There was evident reverence for the body after death and the significance of its removal from home noted. Carers were able to maintain a balance amidst

58 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 275 (NGO) and non profit making, depending on care’, ‘palliative care’ and ‘hospice care’ and Presentation type: Poster the support of the community for its finances. restricted to English articles discussing death Poster number: P169 We analyze 12 years experience of the palliative denial in adults. The 30 articles were analysed program of foundation Cudeca. using a constant comparison technique and A Phenomenological Investigation METHODS: emerging themes regarding the meaning and of the Lived Experience of Irish Palliative We analyze the data of 2539 patients who entry, usage of the words ‘deny’ and ‘denial’ Home Care Nurses caring for the Non- from July 1992 until May 2004, in the palliative identified. The theme of denial as an individual National Population. program of foundation Cudeca, with the psychological process has been examined in a statistical program SPSS 11.0. A descriptive study separate paper. This paper examines the theme Geraldine Tracey, Day Hospice, Dublin, was done of the following characteristics of the of denial as an obstacle to palliative care. Denial IRELAND patients: sex,median age of the patients, median was seen as an impediment to several different

age of the caretaker, and time of permanence in aspects of palliative care including (1) open APRIL 8 FRIDAY This study aimed to investigate the lived program. discussion of dying, (2) dying at home, (3) experiences of Irish palliative home care nurses RESULTS: stopping ‘aggressive’ treatment, (4) advance in caring for the non-national population. Sex: Male (59,6%), Female (40,4%). Median age care planning and (5) control of symptoms. I Ireland, up to the mid 1990s, remained a of the patients: 67 years. Median age of the suggest that rather than only reflecting a predominantly homogenous society (Mac Einri, caretaker: 55 years. Median time of permanence patient’s psychological state, denial may be a 2002) but since then there has been a huge in program: 76 days. construct or label that is a result of a certain way increase in immigration for a variety of reasons. CONCLUSIONS: of delivering health care services and giving This change affects the provision of health care The median age of the patients is high, due to palliative care. Different models of service and since end of life care is strongly mediated the greater prevalence of tumors in older delivery may provide alternate ways of dealing by a person’s cultural and spiritual beliefs, it patients and also in relation to the aging of the with ‘denial’. affects the delivery of palliative care. Thus, Irish population.The males predominate (59,4%), in Home Care Nurses are experiencing a new relation to the greater prevalence of tumors, phenomenon in practice. This study is placed especially of lung, in men. The median time of Abstract number: 279 within a philosophical tradition, which permanence in program is not very long, 76 Presentation type: Poster proposes that people interact with a meaningful days, because the patients are derivatived to the Poster number: P174 world. Guided by Gadamer’s hermeneutic palliative care units by the oncology philosophy, seven Irish palliative home care departments in a very advanced situation of METHADONE PRESCRIBING: nurses, with experience of caring for non- their disease, is necessary therefore, to improve KNOWLEDGE, ATTITUDES AND national people, were interviewed. Gadamerian the coordination between the units of palliative PRACTICES OF PALLIATIVE CARE hermeneutic phenomenological investigation care and the oncology departments. PHYSICINAS IN THE UNITED KINGDOM aims to interpret and understand the phenomenon rather than provide explanation Rachel Thorp, Palliative Medicine, Glasgow, of that experience. Four themes emerged from Abstract number: 277 GREAT BRITAIN, Miriam Tadjali, The Ayrshire the interview transcripts. These were: challenges Presentation type: Poster Hospice, Ayr, GREAT BRITAIN associated with ‘not standing on the same Poster number: P172 ground’ as these people, ‘communication both The purpose of this study was to quantify as a barrier and a gateway’, ‘bridging the gap’ Crossing Boundaries: The setting up of a frequency and practices of methadone and the ‘emotional highs and lows’ of caring National Network for the Palliative Care prescribing and to elicit beliefs about its use for this population. The essence of this study is of People with Intellectual Disabilities in amongst palliative physicians in the UK. A that home care nurses continually strive to the UK questionnaire was developed, piloted and provide care that meets the needs of non- distributed to all members of the Association of national patients through the challenges of Linda Susan McEnhill, Family Support, Suffolk, Palliative Medicine in the UK. 55.4% of difference, language and emotions and GREAT BRITAIN, Noelle Blackman, Respond, questionnaires were returned (402/725). 89% relevance to practice. This can lead to an London, GREAT BRITAIN had prescribed Methadone. In the last year, 37% overwhelming sense of frustration on the had prescribed it 1–2 times, 22% 3–5 times, nurses’ part and a lowed sense of achievement. The NNPCPLD was set up in Great Britain in 20%>5 times. 24% had initiated a prescription The lack of clear understanding of what November 1998. The Network was set up in in an outpatient setting. Overall 7% would palliative care attempts to offer the patient and response to the experience of a small group of consider using Methadone 1st line, but 47% for what the patient wants compounds this. practitioners from within the fields of patients on maintenance therapy. 25% and 65% Acknowledging the ‘difference’ has intellectual disability and palliative care . These respectively would consider it for 2nd and 3rd implications for not only those receiving care practitioners had observed that people with line use. Renal failure, neuropathic pain and but also for those providing that care. intellectual disabilities were often diagnosed loss of responsiveness to another opioid were with cancer too late to benefit from curative the most common reasons for its use. 64% stop treatment but that they also found it difficult to morphine abruptly before commencing Abstract number: 276 access the normal range of palliative care methadone. 85% choose a potency ratio with Presentation type: Poster services. This paper will chart the development morphine depending on the previous Poster number: P171 of the Network and describe the challenges and morphine dose. The most frequently used tensions of working as a Network. Case studies conversion regime (77%) was Morley and 12 YEARS EXPERIENCE OF THE will be used to highlight the issues for people Makin (1). 84% found methadone effective PALLIATIVE PROGRAM OF CUDECA with intellectual disabilities. Time will also be often or sometimes. Most people found side FOUNDATION spent thinking about the future of the Network effects (50%), administration (45%), conversion as it finds a place within the changing policies (63%) and titration (64%) problematic but RAFAEL TRUJILLO, PALLIATIVE CARE, and structures of the UK eg The National manageable. Methadone was most commonly MALAGA, SPAIN, Noelia Morgado, CUDECA Cancer Plan. used for breakthrough pain but more than half FOUNDATION.www.cudeca.org, MALAGA, used a variety of opioids. 37% had switched SPAIN, Rafael Pozo, CUDECA from methadone to another opioid and 82% of FOUNDATION.www.cudeca.org, MALAGA, Abstract number: 278 these were successful. Predominant difficulties SPAIN, José Manuel Lapeira, CUDECA Presentation type: Poster identified with its use were titration, lack of FOUNDATION.www.cudeca.org, MALAGA, Poster number: P173 experience and stigma, for patients and health SPAIN, Marisa Martín, CUDECA care staff. Most respondents commented on its FOUNDATION.www.cudeca.org, MALAGA, Denial as an obstacle to palliative care: a efficacy, particularly in neuropathic pain and SPAIN discourse analysis low toxicity and cost. There is a relative lack of experience in the use of methadone and it is OBJECTIVES: Camilla Zimmermann, Psychosocial Oncology mainly reserved for 3rd line use in in-patients. The principal objectives of Cudeca are: to offer and Palliative Care, Toronto, CANADA Education of health care workers and the “specialised palliative care” to patients suffering development of guidelines may help build from terminal cancer and also to support the Denial of death is perceived as a significant experience and confidence in its use. References family during the illness and in the problem in palliative care practice. This study (1) Morley JS, Makin MK. The use of bereavement process. To form a programme of uses the qualitative method of discourse methadone in cancer pain poorly responsive to study, training, investigation and awareness of analysis and Foucauldian social theory to other opioids. Pain Reviews 1998;5:51–58 Palliative Care. investigate the usage of the term ‘denial’ in the Our care is offered completely free of charge to contemporary hospice and palliative care those patients and families who need it and literature. A Medline search (1970 to 2001) was who live in the Province of Malaga. Spain. performed combining the text words ‘deny’ and Cudeca is a Non-Governmental Organisation ‘denial’ with the subject headings ‘terminal

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 59 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 280 development fund established for this purpose. MODULES METHOD Etichs Events studies with Presentation type: Poster Co-ordination by a highly motivated Board and a comparative analysis from a Ethics Committee Poster number: P175 Executive Director make the realisation of this Narrative Ethics (theatre, picture) dream a distinct possibility. Communication Role-playing with an audio Development of Palliative Care in Zambia and videotape recorder Interactive Theatre Group dynamics Metaplan, sculpting, Timothy J. Meade, Palliative Care Association of Abstract number: 282 metaphors’ method Anthropology Music lab, Zambia, Lusaka, ZAMBIA, Mushi Knandu, Presentation type: Poster figurative lab, creative lab (literature, Palliative Care Association of Zambia, Lusaka, Poster number: P177 photography) For the advanced evaluation ZAMBIA, Sr. Shirley Mills, Palliative Care systems SIMPa make the use of the Objective Association of Zambia, Lusaka, ZAMBIA, How is spiritual care (SC) understood and Structured Clinical Examination (OSCE). From Cromwell Shagula, Palliative Care Association of practised at the end of life in the UK? A 1991 to 2004 SIMPa has been organising the Zambia, Lusaka, ZAMBIA critical literature review. following: COURSE TIPOLOGY NUMBER DURATION PATECIPANTS Residential 15 Two Palliative Care developed through the home Vicky Robinson, Nurse Consultant, London, weeks 315 doctors 290 nurses Informative 34 based care system as a result of the HIV/AIDS GREAT BRITAIN, Rob George, University One day 1500 health workers Basic Formative epidemic and has been in existence for years College, London, GREAT BRITAIN, Peter Speck, 56 From two to five days 8500 health workers without recognition or support from the King’s College, London, GREAT BRITAIN Workshop 10 Two days 110 doc, 124 nurses 30 Ministry of Health (MoH). As a result of health workers Modules in Master Courses 8 conditions in many villages (cramped quarters, Whilst general agreement exists that spiritual One week 120 workers Teachers Formation 2 no water or power) communities requested that and religious needs are different, debate and One week 60 health workers Courses for hospice in-patient units be formed. The largest confusion remain as to the definition and Hospice Team 1 30 weeks (2 years) 30 health and oldest HIV/AIDS NGO in Zambia, Kara nature of SC. Aim To undertake a literature workers Formation for Ethics Committee 1 120 Counseling and Training Trust, currently has 3 search to understand how SC at the end of life is hours (2 years) hospices in the country and there are another 3 understood and practised in the UK. The review faith-based hospices and 2 faith-based sought to: explore the various definitions gain paediatric hospices in development. In August an understanding of the language used in Abstract number: 284 2004, following the first national palliative care academic studies; examine how SC is interpreted Presentation type: Poster conference sponsored, in part, by CARE and practised in the UK at the end of life, and Poster number: P179 International, Help the Hospices and Hospice based on this, offer practical suggestions that Uganda, the Palliative Care Association of will take health care and research forward in this A national survey on the needs of severely Zambia (PCAZ) was formed and has been area. Method Validated qualitative method to ill and dying patients and their carers in recognized by the MoH. Its mission is to review the literature relevant to SC at the end of Switzerland – results from part I, focus- represent and advocate for palliative care life. Results 17 studies met the inclusion criteria. groups interviews training and excellence in Zambia, with the a)Most were by nurses and/or chaplains. b)There support of MoH as well as donors and other was a lack of research in the medical literature. Steffen Eychmueller, Palliative Care, St. Gallen, outside organizations. c)Broad agreement exists between professionals SWITZERLAND, Daniel Haegi, University Berne, and patients that SC at the end of life is Berne, SWITZERLAND, Liselotte Dietrich, important. The notion of ‘being there’ for the Kantonsspital, St.Gallen, SWITZERLAND, Orest Abstract number: 281 patient and ability to give of oneself were Weber, University Lausanne, Lausanne, Presentation type: Poster particularly strong themes. The use of narrative SWITZERLAND Poster number: P176 in these papers were effective at emphasising this point 4)A universal weakness was an Aim: Bordering on the impossible – Striving to absence of authors’ declaration of their own To determine the detailed needs of people in combine quality and coverage in Africa beliefs and how these may have influenced the Switzerland suffering from far advanced disease construction of their studies and conclusions and the needs of their professional and lay Kath Defilippi, Board Chair, Port Shepstone, S. drawn. Conclusion: Definitions of SC may be carers. To create a baseline for future AFRICA useful for professionals, but patients seem to talk interventions and planning on a local, regional of SC more as a concept. Some staff are better at and national level. This is the dream of the recently formed African giving SC than others. Stories told by patients Method: Palliative Care Association (APCA). The and professionals might equip staff better to In a first step, 26 focus groups (3–10 inaugural AGM took place in Arusha, Tanzania understand and provide SC at the end of life participants) in 3 different language regions in June, 2004 and was attended by 22 African than conventional qualitative or quantitative (german, French, italian) with 3 different target countries, 7 of which are represented on the studies of large populations. It seems mandatory groups (a) physicians and b) nurses from duly elected Board. In a continent besieged by that researchers working in this area should different working background, c) patients and HIV/AIDS and poverty with what is arguably, disclose their own worldview and the premisses proxy carers) have been performed in order to the greatest need for palliative care in the course that they bring to their research questions and create a semi-structured questionnaire for the of human history, only 5 African countries the interpretation of their results. second part of the survey. boast established palliative care programmes. Results: South Africa and Uganda also have a The needs differ enormously not only between comprehensive educational infrastructure in Abstract number: 283 the target groups, but also within the same place. In keeping with WHO’s public health Presentation type: Poster group, working background and language approach to palliative care, three Board Poster number: P178 region. Common needs of all groups can be Committees were formed – Advocacy, found in the area of information, cooperation Education/Training and Standards. Each SOME ADVANCED TEACHING and attitude. Interviewing a large number of committee comprises skilled and experienced METHODOLOGY FOR THE ADULT’S severely ill patients may not turn out as feasible interdisciplinary African palliative care EDUCATION IN THE PALLIATIVE CARE for the second part. The methodology for professionals. A team drawn from the board thesecond part of the national survey has been committees promotes culturally sensitive Michele Gallucci, Ospedale di Desio, Desio (Mi), changed in consequence. The findings indicate palliative care at Governmental and programme ITALY, Arianna Cozzolino, UOCP ospedale that choosing “indicator patients” and level, in countries requesting assistance. Buzzi, MILANO, ITALY, Daria Da Col, Ospedale focussing on qualitative instead of quantitative Activities include: Meeting key people in Health di Cuggiono – Legnano, Legnano, ITALY, outcomes seem to be adequate and more Ministries to advocate for the drugs and policy Donato Di Pietropaolo, Asl LAnciano – Vasto, reliable for the Swiss situation (lack of national conducive to palliative care (morphine is Vasto, ITALY, Maria Borsari, Asl Modena, databasis, regional organized health care). currently illegal in parts of the continent); Modena, ITALY Conducting a situational analysis and providing training to graft palliative care onto existing Italian School of Medicine and Palliative Care, Abstract number: 285 home care programmes; Introducing clinical Milan (S.I.M.Pa.) The educational aim of the Presentation type: Poster and management standards to enable Italian School of Medicine and Palliative Care Poster number: P180 organizations to provide quality palliative care (SIMPa), that since 1991 has been organising that includes effective pain and symptom post based courses for doctors and nurses, it is Jordan Pain Relief and Palliative control, treatment of opportunistic infections represented by the Terminal Care. The SIMPa Care Initiative and holistic community-based support. APCA curriculum it is composed by the following plans on scaling up existing best practice modules: clinical, organisation, ethics, Frank Ferris, Medical Director, Palliative Care African models. Financially challenged communication, anthropology. Some of the Standards/Outcomes, San Diego, U. STATES, Jan organizations will be reimbursed for the time advanced teaching methodology, used during Stjernsward Svedala, SWEDEN, Ahmad Al given to APCA by key employees via a the coursed, are showed in the below chart. Khatieb, King Hussein Cancer Center, Amman,

60 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

JORDAN, Mary Wheeler, Capital Hospice, importance of hope and the concept of life after function. A total of 63 cycles were administered. Washington, U. STATES death. The creative arts enhance NCI grade III/IV toxicities were (pts): WBC 1/0, communication by making inner and NEU 2/0, platelets 1/0, SGOT/SGPT 2/0, Each year some 25,000 (0.5%) of the 5.3 million emotional life accessible to consciousness and diarrhea 1/0. One pt developed atrial fibrillation people in the Hashimite Kingdom of Jordan die; enable expression of feelings for which after first cycle. Ten pts were evaluable for and 70% of the 3,300 or more new patients language alone may be inadequate. Such response: SD in 4 pts and PD in 6. Median time with cancer present with stage IV disease. While methods may be useful to individuals working to progression was 3.8 months (1.6–11.5). the Al Malath Foundation for Humanistic Care in palliative care and in clinical supervision of According to Simon two-stage design (P1=0.30), has provided end-of-life care to more than 600 palliative care staff. Reference Mayo S. Symbol, with no objective responses observed in the first patients over the last decade, palliative care metaphor and story. Palliative Medicine 1996; 10 pts, the study was terminated early. services have not been available to most of the 10; 20–21 Conclusion: The regimen we employed did not

Jordanians who could benefit from them. Since show appreciable antitumor activity. Therefore APRIL 8 FRIDAY 2001, the Jordan Pain Relief and Palliative Care a better selection of patients is needed, with a Initiative, a collaborate effort of the Jordan Abstract number: 288 part of them that should be receive supportive Ministry of Health, WHO Jordan, the King Presentation type: Poster care only. Hussein Cancer Center, Hikma Poster number: P183 Pharmaceuticals, San Diego Hospice & Palliative Care, Capital Hospice of Virginia, the EPEC and Welfare benefits service audit Abstract number: 290 ELNEC Projects, and a visionary philanthropist, demonstrates high need and Presentation type: Poster has been making a difference nationally. After good outcomes Poster number: P185 an initial policy workshop in August 2003, the efforts of a National Committee working with Malcolm Payne, Psycho-social and Spiritual Patient access to palliative home care: the Jordan Ministry of Health has led to Care, London, GREAT BRITAIN the role of caregiver age changes in opioid prescribing and dispensing regulations. To ensure adequate opioid An audit of a specialised palliative care welfare Gunn Grande, School of Nursing, Midwifery availability, opioid importation has increased benefits advocacy service included three and Social Work, Manchester, GREAT BRITAIN, and local production and distribution of oral elements: a prospective study of all people s Morag Farquhar, GPPCRU, University of immediate-release morphine tablets has begun. referred during a typical three-month period Cambridge, Cambridge, GREAT BRITAIN, In March 2004, an international faculty during 2003 to identify benefits dealt with and Stephen Barclay, GPPCRU, University of presented the first 3-week introductory course outcomes, and retrospective studies of samples Cambridge, Cambridge, GREAT BRITAIN, Chris in palliative care to 32 physicians and nurses of multiprofessional case records during the Todd, School of Nursing, Midwifery and Social from across the country. After 1 week of period to assess appropriateness of referral and Work, University of Manchester, Manchester, interactive sessions in the classroom based on of a 50% systematic sample of all cases that GREAT BRITAIN the EPEC and ELNEC curricula, and 2 weeks of received more than 20 contacts from welfare bedside mentorship the participants advice staff to assess needs in complex cases. Background: research has shown that older demonstrated significant changes in their The service is a specialised part of social work patients are less likely to receive palliative home attitudes, knowledge and skills. During the provision in a large UK hospice. The study care than younger patients. As the age of course multiple patients benefited from some demonstrated inconsistent referral by nursing primary carers correlates positively with patient of the first oral immediate-release morphine staff, the main referrers, a large workload age, part of the reported bias in access may be delivered in the country. Since April 2004, these including frequent complex cases involving due to carer age rather than patient age. Greater clinicians have returned home to provide from twenty to more than a hundred contacts work commitments or effectiveness in advocacy palliative care to patients and families in their and achievement of benefits and grants for may e.g. enable younger carers to obtain more acute and cancer care facilities and develop patients, carers and families substantially in help. Objectives: to investigate the relationship palliative care services. As of October 2004, the excess of the cost of the service. Provision of between both carer and patient age and access first palliative care consult service has been specialised welfare benefits advocacy for to palliative home care. Method: descriptive, established at King Hussein Cancer and an palliative care patients is likely to meet a quantitative analysis of 123 patients referred to inpatient hospice unit will open there shortly. substantial need and to require specialist a hospice at home service whose primary carer provision. could be identified and agreed to an interview (57% response rate). Data were collected Abstract number: 287 through linkage of electronic records of health Presentation type: Poster Abstract number: 289 service input and carer post bereavement Poster number: P182 Presentation type: Poster interviews. Results: patients who received Poster number: P184 specialist nurse advice (Macmillan nurse) and ‘Beyond Words.’ The Use of Creative palliative home nursing (Marie Curie care) were Arts as a Coping Strategy for Palliative Chemotherapy may not be of benefit for both younger and had younger carers than Care Professionals patients (pts) with non-resectable cancer patients who did not. Of patients referred to of the bile duct system hospice at home, those admitted to the service Heather Wiseman, Specialist Palliative Care had younger carers (t-tests, all p<0.05). Logistic Team, Liverpool, GREAT BRITAIN Cristian Massacesi, Medical Oncology and regression analyses controlling for cancer/non- Radiotherapy, Ancona, ITALY, Giordano cancer diagnosis, patient and carer sex and There is increasing interest in the use of creative Galeazzi, 2Oncology Institute of Marche for socio-economic status showed that carer age, arts in palliative care as a means of accessing the Supportive Care (IOM), Ancona, ITALY, Fabiana but not patient age, independently predicted ‘deep level’ in the dying person (Mayo 1996). Marcucci, Medical Oncology and Radiotherapy, Marie Curie access alongside diagnosis. Both Little however is written about the potential Ancona, ITALY, Lorenza Francioso, Medical patient and carer age independently predicted benefits of such an approach as a coping Oncology and Radiotherapy, Ancona, ITALY, access to Macmillan advice alongside diagnosis. strategy for palliative care professionals, despite Maurizio Bonsignori, Medical Oncology and Age of the carer was the only variable to predict the recognition that working with dying Radiotherapy, Ancona, ITALY admission to hospice at home (all p<0.05). The patients and their families presents challenges, presentation will consider how carer stressors and difficulties and can lead to Background: In unresectable cancer of the bile employment, relationship with the patient and burnout. ‘Beyond Words’ is a collection of duct system, both gemcitabine (GEM) and 5- length of caregiving period inform patterns artwork and poetry using pastels, magazine FU/LV showed moderate activity. We studied an observed. Conclusion: Carer age may be a more picture/word collage, crayon and paints which alternate regimen of GEM and 5-FU/LV. Material important variable than patient age in gives an insight into the world of a palliative and Methods: From Jan 2002 to Aug 2003, 11 predicting home care access. Thus we may need care nurse specialist and some of the issues that patients with non-resectable histologically or to consider the carers’ role more closely in order health care workers face. The pictures and cytologically proven cholangiocarcinoma, to improve access to palliative home care for poems address themes such as grief due to carcinoma of the common bile duct, or gall older patients. anticipated death versus sudden death, grief bladder cancer, chemotherapy-naive, and with due to death versus separation or exclusion, measurable disease were included in the study. managing repeated losses in the workplace The regimen consisted of GEM 1000 mg/m2, versus personal loss, the hiding versus openness i.v. 30-minute infusion, on day 1, alternate with of death, the philosophy of a ‘good death’ and 5-FU, 400 mg/m2 i.v. bolus and 600 mg/m2 i.v. the feelings that arise when reality falls short of 24-hour infusion, and LV, 200 mg/m2, i.v. 2- the ideal, what we teach as professionals versus hour infusion, on day 8 and 9; cycles every 2 what we experience as people and weeks without rest. Results: Pts characteristics: communication issues including disclosure, M/F 5/6; ECOG PS 0/1/2 in 4/5/2 pts; median denial, anger and collusion. Spiritual and age 63 years (27–74); 4 pts had metastatic philosophical issues are explored including the disease, and most patients had alterated hepatic

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 61 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 291 suggest that these patients should be admitted of the teamwork, to improve the quality life. Presentation type: Poster in our Unit early, so that we could give them a There are several important targets in the field Poster number: P186 better quality of life and control of symptoms of RH in palliative care: – Prevention of the till their death. outcomes of being immobile and to minimize it The volunteers in the Home Hospice – Treatment of bed sores and lymphoedema – in Wroclaw Providing patients with orthopaedic equipment Abstract number: 293 such as: orthopaedic corsets, crutches, walkers Malgorzata Rosolowska, Palliative Medicine Presentation type: Poster The results of a cancer are negative psychical Clinic, Home Hospice, Wroclaw, POLAND, Poster number: P188 disorders connected with loosing everyday life Renata Opalinska, Palliative Medicine Clinic, abilities, which caused dependency on others. Home Hospice, Wroclaw, POLAND, Jolanta COOPERATION WITH VOLUNTEERS IN The RH methods when applied skilfully may Zietek, Palliative Medicine Clinic, Home THE PALLIATIVE CARE successfully maintain patient’s self-care Hospice, Wroclaw, POLAND abilities. Above-mentioned methods allow Jean Pruyn, Patient Care, Eindhoven, patients with vertebral metastases perform Palliative Medicine Clinic and Home Hospice in NETHERLANDS, Bart Van den Eynden, every day activity. (after breaking anxiety and a Wroclaw is a professional, multidisciplinary Centrum voor Huisartsgeneeskunde, Univerity use of orthosis). To realise successfully the team(doctors, nurses, psychologists, social of Antwerp, Antwerp, BELGIUM, Theo Koks, rehabilitation programme the family or other workers, physiotherapists, chaplain), providing Comprehensive Cancer Centre South/IKZ, caregivers are involved in the program after ambulatory and home care for about 1000 Eindhoven, NETHERLANDS, Annemie previous training. In the year 2003 the cancer patients per year. Their work is Courtens, Comprehensive Cancer Centre multidisciplinary team performed 15012 home- supported by volunteers. In Sept. 2004 there Limburg/IKL, Maastricht, NETHERLANDS, visits, and 3 physiotherapists – 1809 visits that is were 133 registered volunteers, 64 being active Marijke de Hulu, Comprehensive Cancer Centre 12% of the overall number. The largest group of at that moment. These active volunteers were 11 South/IKZ, Eindhoven, NETHERLANDS our patients are those with the cancers of the men and 53 women aged 22–72, mean age 40. breast, colon, female sexual organs and lungs. 80% of volunteers were persons with high In this project caregivers and researchers from Conclusions: Our rehabilitation offers to a education, different professions: economists, Belgium and The Netherlands work together in patient a unique chance to be active in the last teachers (also at the university), lawyers, order to improve the cooperation between term the life. Additionally it makes possible to physicians, 17 students (11 from Medical volunteers and professionals in the palliative be independent to some degree, which is deeply University). The work of volunteers is care. At this moment in The Netherlands about beneficial to patient well-being. coordinated by social worker. The volunteers 5500 volunteers (organized in VTZ) are have different tasks: they care for the patients, available in the terminal care. Earlier research provide respite care for families, help the indicates that in relatively few cases they are Abstract number: 295 families with everyday obstacles, help the called on their help. The work of volunteers is Presentation type: Poster children, provide bereavement service, and also rather unknown in professionals and some Poster number: P190 help with some administrative work of the professionals don’t accept them as serious Team, help to organize concerts, excursions and caregivers. Interventions are applied in 3 sub- Bisphosphonates can decrease metastasis other events. All volunteers completed the projects and are: agreements about bone pain and improve QL in Palliative course organized by the Team and meet at coordination of care (tasks and competences are Care Patients monthly meetings. They also take part in discussed with caregivers and their managers), a conferences and lectures concerning palliative training for volunteers to improve co-operation Feliks Blaszczyk, Palliative Medicine and hospice care. Since 1997 the volunteers with professionals and interventions aimed at Clinic,Home Hospice, Wroclaw, POLAND, have been engaged in the care of 493 patients. professionals to improve their attitude and skills Adam Dziadura, Palliative Medicine In 2004 from June to August 20% of patients to detect the need of informal care. Finally, a Clinic,Home Hospice, Oncology Centre of received help from the volunteers. very specific intervention is the construction Lower Silesia, Wroclaw, POLAND, Anna and application of an interprofessional network Oronska, Palliative Medicine Clinic,Home of experts, including volunteers who have Hospice, Oncology Centre of Lower Silesia, Abstract number: 292 much experience with the care of patients in Wroclaw, POLAND, Zbigniew Zylicz, Chair of Presentation type: Poster the palliative phase. This panel provides Palliative Care,The Ludwik Rydygier University Poster number: P187 palliative consultation through the internet. of Medical Sciences, Bydgoszcz, POLAND The interventions are monitored and process GASTRIC CANCER AND PALLIATIVE CARE evaluations take place. The main goal of the Introduction and Objectives: Bisphosphonates study is to identify factors that facilitate or are an important element of hypercalcaemia Isabel Costa, Unidade de Cuidados Paliativos, inhibit the co-operation between professionals and bone metastases treatment. The drugs may Porto, PORTUGAL, Madalena Feio, Instituto and volunteers. The results of the analyses will also be used to prevent osteoporosis and Português de Oncologia – CROP,SA, Porto, be used for (local) implementation and for pathologic fractures. They bind avidly to PORTUGAL, Carolina Monteiro, Instituto further spread of knowledge to other regions hydroxyapatite bone mineral surfaces and their Português de Oncologia – CROP,SA, Porto, and countries. Successful experiences and major action is to inhibit osteoclast activity and PORTUGAL products (e.g. protocols, checklists, folders) in thus bone resorption. The role in metastasis one country are communicated to the other bone pain control is uncertain. The use of The Palliative Care Unit of Porto is integrated in country and regions and, if possible, bisphosphonates significantly improves quality an Oncologic Hospital. We evaluated the implemented there. In this way efforts of of life but there is no effect in survival time. The patients admitted in this Unit with gastric innovation in palliative care are brought trial intends to determine bisphosphonates cancer, since the opening in October 1994 to ‘beyond the border’ efficiency in bone pain and evaluate quality of December 2002. In a total of 2491 patients life. Material and Methods: The research admitted in that period, there were 351 patients involved 25 patients. The patients were given admitted with gastric cancer diagnosis. We Abstract number: 294 pamidronate (Pamifos) in intravenous route report a retrospective study of 150 Presentation type: Poster every 28 days. Calcium level in serum and pain representative patients, chosen randomly. We Poster number: P189 intensity (NRS) were marked before the first focused their statement at the time of the dose of drug, then again in the 2nd day, 1st, diagnosis, the ressection or not ressection and The role of rehabilitation and physical 2nd, and 4th week. Quality of life was measured bypass procedures. After the admission in this therapy in the palliative care. (Spitzer Index) before bisphosphonates Unit, we evaluated the ECOG status administration and 3 months after. Half of the performance, metastasis sites, symptoms and Stelmachowicz Miroslaw, Palliative Medicine group were previously treated with external outcome (since the timing of the diagnosis and Clinic, Home Hospice, Wroclaw, POLAND, beam radiation with single dose of 6 Gy or 8 Gy. the admission in the Palliative Care). After the Jolanta Gontlach-Worobiec, Palliative Medicine Results: 25 patients in range of age 44 to 93. analysis of these 150 patients, we found that Clinic, Home Hospice POLAND, Magdalena Women: breast cancer – 11 lung cancer – 1, 72.6% were classified in stage IV (cancer Rybacka, Lower Silesian Oncology Center kidney – 3, unknown primary – 5. Men: prostate staging), 32% had ECOG 3 and 36.7% had POLAND, Anna Sulkowska-Smolanska, Lower cancer – 4, unknown primary – 1. All patients ECOG 4, 40.6% presented peritoneal metastasis Silesian Oncology Center POLAND had bone metastases. Pain relief was significant and 22% presented intestinal obstruction. The during the trial (scale NRS), which resulted In outcome patients since the timing of the Rehabilitation (RH) in the Palliative Care is the reduced intake of analgetics. No important side admission was 62 days. The patients with gastric way of caring those who are terminally ill to effect but flu-like were observed. Quality of life cancer represents 14% of all the patients give them the possibilities of being active as improved in evaluation of every patient. admitted in our Unit and we found that a long as possible. RH allows expanding ‘the Conclusions: It is possible that improvement in significative number of patients presented physical space’ of patients; therefore they do Quality of life shown in this research is caused already advanced cancer at the time of the not need to be ‘confined to bed’. The by bisphosphonates administration. However diagnoses. We believe that these results may rehabilitation process is an important element bisphosphonates should be considered where

62 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

analgesics and/or radiotherapy are inadequate more than 30 days with a sensibility (S) =1 and readmissions to hospitals, the outcomes of the for the management of painful bone specificity (E)=0.32. The PPI reach a S=0.81 and hospital admissions and positive or negative metastases. E=0.55. The IS obtain a S=0.25 and E 0.71. ROC predictors of patient outcomes. A retrospective curves shown a area under curve in the PaP analysis was performed on the medical records score=0.708, PPI=0.662 and IS=0.605. of patients who have been discharged from Abstract number: 296 Conclusions: None of the 3 model has a good S Dover Park Hospice to hospitals between the Presentation type: Poster & E. PaP score has a great S for patients period 1 September 2003 and 1 September Poster number: P191 surviving more than 30 days, but its E is very 2004. There were a total of 105 patients with an low. In the other side, IS has an acceptable equal number of male and female patients. The PALLIATIVE CARE AND POST-STEROID capability in prognostic survival less than 30 main reason for discharge of patients back to HYPERGLIKEMIA – CASE REPORT days. PPI has E & S among PaP and IS. hospitals was for specific therapeutic

Definitive data of its study are waited, but new interventions which were not available in the APRIL 8 FRIDAY Renata Opalinska, Palliative Medicine models, universally validated are needed. hospice setting. Majority of patients were Clinic,Home Hospice, Wroclaw, POLAND, discharged back to the hospice after a short Volodia Yasnitskyy, Palliative Medicine period of hospitalisation. Patient outcome with Clinic,Home Hospice, Oncology Centre of Abstract number: 298 regards to mental status revealed improvement Lower Silesia, Wroclaw, POLAND, Anna Presentation type: Poster in majority of patients after discharge from the Oronska, Palliative Medicine Clinic,Home Poster number: P193 hospitals. Resolution of the symptom or Hospice, Oncology Centre of Lower Silesia, problem requiring hospitalisation was achieved Wroclaw, POLAND, Slawomir Pawel Wozniak, Pathological Fractures in Cancer Patients: in most cases as well. However, mobility and Palliative Medicine Clinic,Home Hospice, Can they be Prevented? activities of daily living remained the same after Oncology Centre of Lower Silesia, Wroclaw, hospitalisation. Most patients survived 1 to 3 POLAND Helen Emms, Wirral, GREAT BRITAIN, Nicholas months after discharge from the hospital. It is Emms, Wirral NHS Trust, Wirral, GREAT thus concluded that there is a role for The authors present the case of a 67-year-old BRITAIN, Michael Hennessy, Wirral NHS Trust, hospitalisation of terminally ill patients, prostate cancer patient with brain secondaries. Wirral, GREAT BRITAIN especially where there is an acute medical The prolonged treatment with relatively high problem with a clear indication for specific doses of steroids (dexamethason p.o. and s.c.) Introduction: Prophylactic fixation of long therapeutic interventions. However, it is was necessary. Attempts to cancel or lower the bone metastases is generally easier for the imperative that the goals of management in dose resulted in impairment of consciousness surgeon and less traumatic for the patient. Risks transferring patients back to hospitals are and worsening quality of life of the patient. associated with pathological fractures and their discussed and understood by the patient and his After 6 months’ treatment with steroids, during management in cancer patients are high. Could family to avoid unnecessary and futile medical routing bi-weekly control of blood glucose, the these risks be reduced in the clinical setting by treatment. hyperglikemia 500 mg% was found. The patient early detection of bony metastatic disease was reffered to the Endokrinological Clinic and requiring prophylactic fixation? Aim: To assess treatment with insulin was settled. The patient the number of pathological fractures presenting Abstract number: 300 returned home, still taking steroids. His quality in a British district general hospital and whether Presentation type: Poster of life was good, he was fully conscious; in these could have been prevented. Methods: A Poster number: P195 February 2004 he wrote an impressive letter retrospective review of casenotes was performed about his existential feelings concerning on patients presenting with a pathological The influence of NSAIDs, corticosteroid coming death. The authors discuss the problem fracture in a 12 month period. Data was and progestogen therapy on selected of using steroids in the patients with brain collected including cancer diagnosis, known parameters of cancer cachexia syndrome metastases and dealing with diabetes in the presence of bony metastatic disease, site of palliative care. They concluded, that palliative fracture and preceding symptoms. Results: 16 Maciej Baczyk, Department Of Endocrinology,, care doesn’t mean exclusion of intensive patients were included; median age 71 years Poznan, POLAND, Lidia Gorzelinska, Karol treatment of correctable symptoms that resulted (range 38–90). The commonest primaries were Marcinkowski University School Of Medical in improving quality of life as well as can breast 5/16 (31.3%) and lung 4/16 (25%). At the Sciences, Poznan, POLAND, Ewa Baczyk, Karol prolong life of the patient. time of fracture 5/16 (31.3%) were known to Marcinkowski University School Of Medical have bone metastases. Prophylactic surgery had Sciences, Poznan, POLAND, Jacek Luczak, Karol been considered but not performed in 1/5 Marcinkowski University School Of Medical Abstract number: 297 (20%). In 2/16 the fracture was the presenting Sciences, Poznan, POLAND Presentation type: Poster feature of their malignancy. 9/16 patients had a Poster number: P192 history of uninvestigated pain at the fracture The aim of study was to establish the site for a median of 8 weeks (range 2–26 weeks). correlation between grade of cachexia and Comparison of the predictive capability of There were 5 spinal, 6 long bone and 5 femoral possible endocrine, selected non endocrine survival of three prognostic models in neck fractures. All spinal fractures were treated factors and type of therapy. The examined palliative care. A multicentre study: conservatively with analgesia and 4/5 patients group included 60 patients with different grade preliminary results. had subsequent radiotherapy. All other fractures of cachexia. In each patient, basic biochemical were treated surgically but 2/11 were too unwell and selected hormonal parameters, serum level Josep Porta-Sales, Palliative Care Service, for post operative radiotherapy. 1/11 had of cytokines (IL-6, TNF-a), insulin and IGF-1 L’Hospitalet-BCN, SPAIN, Maria Nabal-Vicuña, previously had radiotherapy to the fracture site. were estimated. Parallelly the personal card of Hospital Universitari Arnau de Vilanova, Lleida, Conclusions: We recommend that in cancer symptoms control, type of therapy, activity SPAIN, Jesus Gonzalez-Barboteo, Institut Catala patients, reports of bony pain should be (Karnofsky`s scale) and depression (HADS scale) d’Oncologia, L’Hospitalet-BCN, SPAIN, Josep promptly investigated and managed in was described. Disturbances of T4 conversion to Planas-Domingo, Hospital de l’Esperança, BCN, accordance with British Orthopaedic T3 – low T3 syndrom, high revers-T3 values, SPAIN, Joan Carulla-Torrens, Hospital Association/ British Orthopaedic Oncology low/normal insulin and IGF-1 levels, higher Universitari de la Vall d’Hebron, BCN, SPAIN Society guidelines. Risk of fracture can be than normal cortisol values with abnormal predicted using Mirels’ scoring system. regulation of secretion in hormonal Aim: Compare the prognostic capability of three examination were observed. The statistically prognostic models (PaP score, PPI, and IS) for a significant, positive correlation between weight cut off point of 30 days. Method: Unselected far- Abstract number: 299 loss and anorexia, pain intensity, grade of advanced cancer patients admitted in Palliative Presentation type: Poster depression and anxiety, higher values of cortisol Care Units were enrolled consecutively. Were Poster number: P194 was detected. Tendency to mild/moderate excluded younger than 18 y, treated with anaemia, hypoproteinaemia and abnormal Chemotherapy 4 wks previously recruitment, Discharging terminally ill patients regulation of glycaemia (higher then normal haematological neoplasm, impending death, back to hospital from a hospice: A cortisol level together with cytokines leads to and participation refusal. The 3 prognostic retrospective study insulin resistance, tendency to postprandial models used were PaP score (Maltoni), PPI hyperglycaemia, which inhibits appetite after (Morita, and IS (Porta). Maximum follow-up as Lynette Ngo, Medical, Singapore, SINGAPORE, small meal administration) in biochemical 12 wks because is the maximum time allowed Noreen Chan, Dover Park Hospice, Singapore, evaluation was detected. The corticosteroid or in the Clinical Pronostic Score in the PaP score. SINGAPORE progestogen therapy, especially used with Results: 99 prognostic evaluations (PE) were NSAIDs, decreases TNF-α, IL-6 and high cortisol done in 85 patients; 8 patients had 2 PE, and 3 Transfer of terminally ill patients back to levels, increases appetite, but longer-term patients had 3 PE. Mean age was 66.6 y, and hospital from the hospice has been viewed treatment can inhibit 65.9% were men. Mean survival of the sample negatively as an event with adverse impact on hypothalamic–pituitary–adrenal axis. The was 23.7 days, with a median of 17 days. The the patient and his family. However, few studies cancer cachexia is the result of multiple factors. PaP score classify correctly patients surviving have undertaken to determine the reasons for Chronic, higher then normal, cortisol level

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induces depression, protein degradation useful even in earlier stages of the disease. Abstract number: 304 (together with TNF-a, especially in skeletal Rethinking the treatment program, as a process Presentation type: Poster muscles mass), lipolysis, higher liver glucose that from the very beginning is developed Poster number: P199 production and gluconeogenesis; and together around a concept of empowerment, makes it with cytokines leads to insulin resistance. In our easier to agree on a program of care and on the Palliative Care in the opinion pain control, treatment of nausea, anti- decisions that must be faced in the advanced Emergency Department depression therapy (psychic state), nutritional stages of the disease, which are closely tied to support, improvement of appetite and potential levels of involvement of the patient Marian Conroy, Palliative Medicine progestogen therapy are the best way in the and his or her family. Methods The working Department, Dublin 4, IRELAND, Eoin Tiernan, treatment of cancer cachexia. group ‘Palliative Treatment and Pain Therapy’ St. Vincent’s University Hospital,, Dublin, has agreed on the importance of tackling IRELAND, Joan Cunningham, St. Vincent’s questions related to the care program of the University Hospital, Dublin, IRELAND, Aoife Abstract number: 301 patient, in all of their complexity. Stages of the Gleeson, St. Vincent’s University Hospital, Presentation type: Poster project: 1) Theoretical reinterpretation of the Dublin, IRELAND, John Ryan, St. Vincent’s Poster number: P196 care program for the patient 2) Sharing with University Hospital, Dublin, IRELAND professionals of their training needs and the FOUR YEARS OF HOSPICE HOME CARE ‘theory-based’ planning of patient programs 3) Though a majority of terminally ill patients ACTIVITIES BY VOLUNTEERS The training sessions were a foundation for prefer to be cared for and die at home, up to directing the work of professionals towards 66% of all Irish deaths take place in hospitals or Matija Rimac, Vice-President of the Croatian goals to be pursued in the development of the institutions. Following a crisis at home, many Society for Hospice/Palliative Care, CMA, palliative therapy network, proposing work patients attend Emergency Departments (ED). ZAGREB, CROATIA-HRVATSKA methods that unite organizational and Objective: To examine ED attendances by professional outlooks. 4) The theory-based palliative care patients; to determine their In Croatia the single practical hospice unit is program was fitted into the local context in appropriateness; to identify any potential for driven by health professionals acting smaller working groups Evaluation Assessment improving systems. Methods: Those patients volunterally.The interdisciplinary home care on the basis of the indicators which have been seen by the palliative care service over a 12- team is involving four medical doctors, nurses, identified is to take place six months from the month period who subsequently attended ED social workers, psychologyst and physical beginning of the experiment. were identified from hospital computerised therapist supported by volunteers of other databases. Patient notes were reviewed for professions.The headquaters are at Regional details and outcome of attendances. Results: 67 Hospice Centre, Zagreb, Hirceva 1, owned by Abstract number: 303 of the 657 patients seen by the palliative care civil association – Croatian Association of Presentation type: Poster service over the study period subsequently Hospice Friends. The administration, visits Poster number: P198 attended ED. 37 were known to the palliative records and home care aids storage is there. homecare team; 30 were not, and had only There are also weekly consultation meetings PALLIATIVE CARE NETWORK (PCN) been seen previously by the hospital palliative held, and the education courses of different IN THE DISTRICT OF LUGO OF care team (HPCT). There were a total of 81 ED profiles, as well. The non health professional RAVENNA-ITALY visits – 56 admissions to hospital, 20 discharges are trained at supervised at visits in an home for from ED, 3 deaths in ED, 1 patient did not wait elderly and disabled. the most appropriate are LUIGI MONTANARI, ONCOLOGY SERVICE, and 1 unknown outcome. Only 4 patients were selected for home care visits. They have also LUGO, ITALY, ILARIA STRADA, ONCOLOGY seen by the HPCT in ED. Average time in ED: wekly supervision meetings conducted by SERVICE, LUGO, ITALY, ANNA RITA FUGGETTA, 5hours 56mins. 44 of the 56 admissions to volunteers coordinator. The number of new ONCOLOGY SERVICE, LUGO, ITALY, MARIA hospital were judged unavoidable e.g. sepsis, patients asking for PC has increased from 45 in CONSIGLIA QUARTA, ONCOLOGY SERVICE, CVA. 10 were judged avoidable if review by year 2000 to 207 during first 9 months in 2004. LUGO, ITALY, GIORGIO CRUCIANI, palliative homecare team or GP had been The time has come in which the voluntary ONCOLOGY SERVICE, LUGO, ITALY available that day. It was not possible to acivity must be changed into the full time determine appropriateness of admission for 2 engagements of the staff and the Institution for Purpose The Country of Ravenna has a patients. Of the 20 patients discharged from ED, palliative care organized. The Committee for population of 350. 000 inhabitants.In this half were judged avoidable attendances. In total, Palliative Care of Ministry of Health, succeeded Country there are 3 Districts (Ravenna, Lugo approx. 25% of ED attendances were judged in implementing into the Health protection law and Faenza). Every year about 350 people die of avoidable. Conclusion: Better availability and the Institution consisting of three main units: cancer in the District of Lugo. In April 1993 a utilisation of community palliative care Home care visits, Outpatient department for PALLIATIVE HOME CARE UNIT (PHCU) was resources could reduce the number of pain and palliative care, and Hospice day centre. actived in the District of Lugo to permit the terminally ill patients requiring attendance at It should be the solid base for further terminally ills to spend their last days at home. ED and possible admission to acute hospital. development of practical and educational Up to now, about 60% of the patients entered Early review by the HPCT in ED may assist issues. into PHCU (50% of terminally ill cancer patients being admitted or discharged to the patients) died at home, but 70% of all patients most appropriate service. with advanced cancer in our province spent Abstract number: 302 days of life in Hospital. We have proposed a Presentation type: Poster project of Palliative Care Network connected Abstract number: 305 Poster number: P197 with the Departement of Oncology of Ravenna Presentation type: Poster Objectives: to achieve a Program of Continous Poster number: P200 DEVELOPING THE PALLIATIVE THERAPY Care in patients with advanced cancer; reduced NETWORK OF THE LOCAL HEALTH hospitalization days; evaluation of Quality of PAIN THERAPY IN THE CARE OF THE AUTHORITY IN REGGIO EMILIA Life; evaluation of symptom control and quality ONCOLOGY PATIENT of assistance; realization of Video-Tele- Daniela Riccò, Health Management, Reggio Assistence Network and Computerized Clinical Daniele Govi, General Care, Reggio Emilia, Emilia, ITALY, Rosanna Carbognani, Reggio Chart Methods. Palliative Care Network ITALY, Daniela Riccò, Reggio Emilia Health Emilia Health Authority, Reggio Emilia, ITALY, Palliative Care Unit in Lugo Hospital (10 beds); Authority, Reggio Emilia, ITALY, Rosanna Daniele Govi, Reggio Emilia Health Authority, Hospice in the District of Lugo (8 beds) Carbognani, Reggio Emilia Health Authority, Reggio Emilia, ITALY, Pierantonio Magnani, Palliative Home Care Unit in the District of Reggio Emilia, ITALY, Pierantonio Magnani, Reggio Emilia Health Authority, Reggio Emilia, Lugo (15 Patients) Home Care Service with Reggio Emilia Health Authority, Reggio Emilia, ITALY, Cristina Pedroni, Reggio Emilia Health Medical Practitioners Palliative Care ITALY, Cristina Pedroni, Reggio Emilia Health Authority, Reggio Emilia, ITALY Ambulatory Day Hospice Results. Actually is Authority, Reggio Emilia, ITALY active the Hospice of Lugo with 5 beds for Background The development of a palliative Terminally Ill Patients, The Palliative Home Pain is a symptom that frequently restricts the therapy network is inherently tied to the Care Unit whit 15 patients simultaneously and quality of life of the oncology patient in acquisition of specific skills and tools that allow Video Tele Assistance for patients with necessity advanced stages of the disease. Attention to pain professionals to better orient their activity, of intensive care. Equipe of Palliative Care and skills for basic intervention must be more centering it around the patient and his or her Network of Lugo: 1 Medical Doctor Head of widely fostered in the healthcare field, family, with a full grasp of the physical, Medical Oncology Departement of Lugo, 1 overcoming notorious prejudices about the use psychological, and social repercussions that Medical Doctors of Medical Oncology of opioids. It is necessary to work for the stem from the impact of the illness. Goals The Department of Lugo 3 Medical Doctors of integrated involvement of different healthcare primary goal of the work underway is to plan Oncology Institute of Romagna and National professionals in programs organized within the and test the cooperative creation of treatment Association of Tumors of Bologna 1 Head Nurse network of treatment which, in our context, plans for oncologic patients, from a procedural and Nurses of A-USL of Ravenna and of Istituti envision the ongoing therapeutic responsibility standpoint in which a palliative approach is Riuniti of Lugo 1 Psycologist 15 Volunteers of the General Practitioner 1. To widely foster a

64 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

qualified therapeutic response on the part of clinical & social), including patients home, PCT Abstract number: 309 the General Practitioner and the local professionals in transit via mobile devices – Presentation type: Poster Community Nurse (first level), aimed at developing best practices dissemination – Poster number: P204 meeting the whole demand that falls within the supporting cross-sector communication – oncologic treatment strategy, encouraging supporting all care providers at the point of care A century of caring for the dying opportunities for proper management of – providing and developing appropriate in East London: producing a history of antalgic palliative therapy in the patient’s home education for health professionals. St Joseph’s Hospice 2. To broaden and standardize the diagnostic, therapeutic, and care programs of the local Michelle Winslow, International Observatory authorities and the AUSL public hospitals, with Abstract number: 307 on End of Life Care, Lancaster, GREAT BRITAIN, the greatest possibile degree of professional Presentation type: Poster David Clark, Lancaster University, Lancaster,

integration, through a second level of activity Poster number: P202 GREAT BRITAIN APRIL 8 FRIDAY (pain therapy and palliative care clinics) 3. To orient the recommendation and the Rosa Urday San Miguel, Anestesiologia, Lima, Background St Joseph’s Hospice in London has management of invasive methods of analgesic PERU special importance in palliative care history. therapy (third level) towards cases selected The oldest hospice in England to have remained through a step-by-step procedure of integrated, Objective To determine survival of advanced within its founding framework of governance multiprofessional assessment. Creation of cervical cancer patients and the significant (Sisters of Charity), it serves a community with specialized training programs for general characteristics who had been referred to the a history of poverty, deprivation, and ethnic practitioners, oncologists, and nurses aimed at: Palliative Care and Pain Service of Cancer and cultural diversity. Cicely Saunders developing – skills for diagnosing types of pain, Institute ‘Eduardo Cáceres Graziani’ in Lima, undertook her early research here and the for planning analgesic treatment, and for Perú. Methods A Prospective Cohort descriptive hospice has been the training ground for several assessing and monitoring results – the capacity study was made. 174 patients with terminal cohorts of doctors and others, who went on to for professional integration in the planning of Cervical cancer that were admitted to the practise in hospice and palliative care settings care strategy, and in searching for ways to Palliative Care and Pain Service of Cancer worldwide. St Joseph’s demonstrates how a connect home and hospital care Definition of Institute ‘Eduardo Cáceres Graziani’ in the hospice organisation can expand, change and the role and functions of the General period between 2.1.01 to 31.12.01; follow up adapt, but continually retain its original Practitioner who is the area consultant, and concluded on 31.07.03. The SPSS Program was mission and purpose. Aims (1) To write a creating pain therapy and palliative care clinics used. Survival rates were estimated using the centenary history of the hospice, covering the that are distributed among the oncology day Kaplan Meier’s curves. Results The average age period 1905–2005. (2) To commemorate one hospital services. Evaluation Benchmark was 50.93 years, the survival median and the hundred years of caring for dying people in the indicators have been defined for both process survival time was 82 and 118 days, respectively. East End of London through historical and outcome Mortality had an incidency of 0.25 reflection on St Joseph’s development. (3) To patients/month in risk. The admission to the construct an accompanying exhibition for service in Clinic State IV (A or B) or having public access. Methods The project has involved Abstract number: 306 received Chemiotherapy were the cataloguing and analysis of the hospice’s Presentation type: Poster characteristics that significantly influenced in documentary records and an extensive oral Poster number: P201 the survival time of the patients studied. history programme. It draws on the best Conclusions In general, these patients that we principles of collaborative research by working Decision Support and knowledge driven studied had a reduced probability of survival. in partnership with key stakeholders at St collaborative practices in Palliative Care – Joseph’s. The study is placed on the boundaries PALLIANET of ‘history’ and ‘evaluation’ in seeking to Abstract number: 308 analyse the ways in which St Joseph’s has T Bozek, Palliative Care, London, GREAT Presentation type: Poster functioned over time and in addressing the BRITAIN, Anne Carruthers, Guy’s & St Thomas’ Poster number: P203 challenges and opportunities which it faces Foundation Trust, London, GREAT BRITAIN, today. Appreciation of methodological issues Frank Baldesare, Guy’s & St Thomas’ Patients discharged from a palliative care arising in the research process is key, since the Foundation Trust, London, GREAT BRITAIN unit: The role of the social worker question of a ‘negotiated history’ has consequences for representation. Conclusions The PALLIANET Project is co-funded by the EU Luc Plassais, Palliative care, Paris, FRANCE, An exhibition recording the history and IST Research Programme. This presentation Annie Frapsauce, Hopital Cognacq-Jay, Paris, development of St Joseph’s Hospice will run addresses the role of improving FRANCE through 2005, and a centenary volume will be communications and real time access to published. This important historical information amongst palliative care provider This prospective study analyses the evolution of undertaking will produce an institutional networks, to improve the quality of care. It the patients that were discharged from the history for St Joseph’s and place the hospice in reports on a research project, PALLIANET – palliativ care unit of Cognacq-Jay hospital over the wider context of national and international Decision Support and knowledge driven the January 1st–September 30th period. During palliative care developments. collaborative practices in Palliative Care, which this period, 220 patients were admitted into this focuses on the improvement of collaborative 20-bed unit, of whom 22 – that is 10% of all practices in palliative care networks. It enables a admissions – were eventualy discharged. The Abstract number: 310 Palliative Care Team (PCT) to support allied discharged were 6 men and 14 women (one Presentation type: Poster professional care providers, both medical & woman was discharged on three different Poster number: P205 non-medical professionals, in – Better occasions). All were terminaly ill cancer patients understanding the patient’s context (clinical, in the advanced stages of the disease with short- Morphine: Delusion and inexperience psychological & social dimensions). – Making term life prognosis (average stay in the unit is information available anytime/anywhere to about three weeks). 3 patients were transferred Natasa Milicevic, Oncology Dept., Belgrade, support decision making processes The benefits to and other palliativ care unit. 1 was transferred SERBIA AND MONTENEGRO, Jasmina Gutovic, expected from the approach are – Reduction of back the medical oncology unit. 1 was Medical Center, Belgrade, SERBIA AND time spent & costs by PCT members to prepare transferred to a retirement house. 2 discharged MONTENEGRO assessments & home visits – Drastic reduction wanted to die at home 15 went home with life of the number of interventions due to poor spans that had not been considered viable upon Serbia and Montenegro is one of the rare communications – Elimination of their admission. The study aims at specifying European countries where morphine hasn’t communication disruptions & delays between the role of the social worker in terms of: – been established as a ‘gold standard’ for the care providers – Reduction of the % of preparing for a patient’s discharge – following management of severe chronic cancer pain. difficulties encountered by care providers that up the patient, mostly at home, after the initial Aim: to explore the attitude of medical staff need the intervention of the PCT – Reduction of care and support provided by the palliative care (doctors and nurses) towards the use of time between referral to & PCT initial patient unit staff as part of the end-of-life treatment. The morphine for the relief of severe chronic cancer assessments – Reduction of case study prep time study also points out the required conditions pain. Method: All doctors (n=131) and nurses – Easing implementation of shared clinical (which necessarily have to be) that will allow the (n=223) employed by University Medical Center guidelines/protocols – Appropriate information discharged patient to fulfill his or her desire to ‘Bezanijska kosa’ were asked to answer a & knowledge access for all PCT community live. number of questions as a part of the larger members – The Information & Communication questionnaire about palliative care. One of the system for the project relies on the following questions was: do you think that morphine is a principles – facilitating timely referral to the drug of choice for management of severe PCT – enabling of a patient centric service; chronic cancer pain? Results: All together 203 empowering all the PCT network members in doctors (n=82) and nurses (n=121) completed sharing patient’s information (demographic, the questionnaire. Among them 60 doctors

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 65 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

(73,2%) are of opinion that morphine is a drug Abstract number: 312 reason the name of the project was changed to of choice for the severe cancer pain, 15 of them Presentation type: Poster “Integral oncology care”. The introduction of (18,3 %) think that it is not, and 7 doctors (8,5 Poster number: P207 the patient to the program is made, at least, %) declare that they don’t know the answer. As several weeks before it is put into effect. The for the nurses the answers are as follows: 87 Do patient-held records improve social worker acting as case manager, begins (71,9 %), 25 (20,7 %) and 9 (7,4%), respectively. continuity in cancer and palliative care: a patient’s intake by interviewing him and taking Conclusion: A significant percentage of the systematic review him under her surveillance, while the patient is doctors (26,8 %) and nurses (28,1 %) still still on active treatment in the unit, but whose consider morphine not to be the best solution Marjolein Gysels, Palliative care and policy, condition is considered likely to deteriorate. She for the severe cancer pain management or they London, GREAT BRITAIN, Irene J Higginson, becomes the contact who will arrange home do not know how to answer that question. In King’s College London, London, GREAT and follow-up community care. Nursing and view of those results we can conclude that our BRITAIN, Alison Richardson, King’s College socio-psychological services are involved in health care professionals need better education London, London, GREAT BRITAIN order to help the patient and his family adjust concerning cancer pain relief. KEY WORDS: to, and accept, the change. Ninety percent of cancer pain, education, morphine. Background: Palliative care is usually provided patients can be taken care of in the community in a complex health care system with patients during this difficult period. It must be noted moving between hospital, home and specialist that while discussing the options of change, we centres. Cancer patients with palliative care check the desire of the patient to continue Abstract number: 311 needs encounter a large number of health treatment at home and the capability of the Presentation type: Poster professionals who often do not have their family to absorb and support him. For all Poster number: P206 current clinical information to hand. A patient- patients transferring from active treatment to held record could provide the necessary symptom control a complete change in PALLIATIVE CHEMOTHERAPY NEAR continuity of care and avoid the duplication of psychological attitude takes place. The THE END OF LIFE: TOO LATE, TOO record keeping. Aim: To assess the effectiveness transitional care program is an approach for MUCH? A RETROSPECTIVE ANALYSIS OF of the patient-held record in cancer and easing the suffering involved. In our paper we 662 PATIENTS palliative care. Method: Relevant literature was will discuss the results of 6 years experience, identified through computerised databases and organizing treatment for over 400 patients in Cataldo Mastromauro, Oncology, Venice, ITALY, bibliography searches. The methodological the community. Ottorino Nascimben, Department of Oncology, quality of the studies was assessed according to Mestre-Venice, ITALY, Michele Medici, the standard grading system of the Clinical Department of Oncology, Mestre-Venice, ITALY, Outcomes Group. Results: Thirteen studies were Abstract number: 314 Ardi Pambuku, Department of Oncology, identified through this process: seven RCTs and Presentation type: Poster Venice, ITALY, Adriano Paccagnella, Department six non-experimental studies. Evaluations of Poster number: P209 of Oncology, Mestre-Venice, ITALY interventions experimenting with patient-held records have reached equivocal findings. The A needs assessment of patients under OBJECT OF STUDY AND METHOD. We studies reported that most patients welcomed a homecare during May to July 2004 retrospectively reviewed 662 deceased patients patient-held record. The main problems related (pts), out of 1105 treated with palliative to its suitability for different patient groups and Miriam Colleran chemotherapy from 01/01 /00 to 01/03/04 for the lack of agreement between patients and locally advanced or metastatic cancer, in health professionals regarding its function. The object of study. A retrospective review of outpatient setting. Univariate and multivariate Patients see it as a way to integrate their wishes the homecare and inpatient charts was carried analysis (using Log rank test and Cox’s model) into the management of their care while health out on all the patients under homecare from of pts characteristics were conducted to professionals see it as a record of technical May to July ’04 inclusive. The aim was to determine their effects on survival from the information. However, it encourages the determine the numbers of homecare patients beginning of last chemotherapy (SURV LCT). sharing of information and patient who were receiving phlebotomy, Moreover we analysed duration (DUR) of LCT participation in decision making among bisphosphonates, red cell or platelet transfusion and residual survival (RES SURV) from last CT motivated patients. Conclusions: Rather than as outpatients in other institutions or in general infusion to identify subset of pts treated for a implying that patient-held records should be practice. The purpose was to assess if patients short time and near the end of life. abandoned, these findings suggest further may benefit from having these procedures POPULATION: sex (male: 382, female: 280); age research is required on what is potentially an available in day hospice. (< 55yrs: 111, 55/70yrs: 314, 70yrs: 237), site important tool for patient participation. Method: The charts of 16 homecare patients primitive tumour (lung 231, colorectal 107, were not available at the time of the breast 101, other 223); N° previous retrospective review and hence, omitted. 14 chemotherapy lines (0: 324, 1: 177, 2:87, 3: 45, Abstract number: 313 homecare patients who were inpatients, in >/=4: 29); state of disease at LCT (locally Presentation type: Poster either the palliative care unit or a hospital and 2 advanced 102, metastatic 560), performance Poster number: P208 patients who were ‘on hold’ the entire duration status ECOG (PS) (0: 240, 1: 364, 2: 55, 3: 3) of their time in the study period were excluded. Median SURV LCT, DUR LCT and RES SURV INTEGRAL ONCOLOGY CARE 197 patients with malignant and non- LCT were 137, 56 and 72 days respectively. SERVICE: TRANSFER FROM HOSPITAL malignant disease were included in the RESULTS. At multivariate analysis the following TO COMMUNITY determination of the patients who were and factors influenced SURV LCT: PS (p 0,000), AGE potentially could require phlebotomy. 4 (p 0,006), STATE OF DISEASE (0,04) and Frida Barak Dr. Lev Ostrowsky, Leumit Health patients with a diagnosis of non-malignant PREVIOUS CT LINES (p 0,008). No correlation Fund, Ashdod, Israel, Ms. Ruti Nathaniel, disease were not included in the section of the was seen with site or stage at diagnosis. LCT Faculty of Health Sciences, Ben-Gurion review assessing the numbers of patients lasted less than 45 days in 290 pts (44%). 161 pts University of the Negev, Israel, Ms. Sophia receiving intravenous bisphosphonates. (24,3%) received last CT infusion within 30 Lifshitz, Faculty of Health Sciences, Ben-Gurion Results: 32 patients had blood tests. 8 patients days before death. This population had lower PS University of the Negev, Israel received either red cell or platelet transfusion and shorter DUR LCT vs remaining pts (PS2 was recorded. Of the 8 homecare patients who 18% vs 5% and DUR LCT <45 days 74% vs 34%) Transfer from standard oncology treatment to received transfusion during this three month CONCLUSIONS. In our sample we identified community care is regarded by patients and period, 2 did not have recorded in their prognostic factors of SURV LCT. A considerable their families as an unwelcome rupture of homecare notes that they were having a full percentage of pts receives CT too close to death. relationship with the department. Originally blood count. One patient was awaiting a red cell Further prognostic factors are needed for our project was called “Transitional Care transfusion at the time of his first homecare identification of this subset of frail pts in order Service” and created for those with advanced visit. 193 patients with malignancy were to refer them to palliative care programs. disease and a need to convert from hospital included in assessing the numbers of patients treatment to community care. We discovered who were receiving bisphosphonates.16 from experience and current literature that patients received bisphosphonates, one of transitional care is designed for patients whose whom did not have bony involvement recorded condition requires reconsideration of their in her homecare notes. Of the patients with “move on” state of the disease and a change bone metastases, 13 died. from anti cancer active treatment to another Conclusion. The provision of phlebotomy, phase of care. We quickly learned that our transfusion and the administration of responsibility continued beyond the initial bisphosphonates would facilitate improved steps of patient’s transferal and the organization access and availability for patients and his care in community. Two further steps were improved quality of life.. added: monthly visits and continued family support in event of patients demise. For this

66 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 315 Presentation type: Poster Poster number: P210

Liverpool Care Pathway for the Dying Phase: implementation in the Netherlands by the Comprehensive Cancer Centre Rotterdam

Edith van den Aardweg, Comprehensive Cancer Centre, Rotterdam, NETHERLANDS, P Geurts,

Comprehensive Cancer Centre, Rotterdam, APRIL 8 FRIDAY NETHERLANDS, S.J. Swart, Nursing Home Antonius Ijselmonde, Rotterdam, NETHERLANDS, L van Zuylen, Erasmus MC- Daniel den Hoed Cancer Centre, Rotterdam, NETHERLANDS

Background – At the end of 2003 the researchproject ´Care and quality of life in the dying phase´ started in the region of the Comprehensive Cancer Centre Rotterdam. Part of this project is the implementation of the Dutch version of the Liverpool Care Pathway for the Dying Phase (LCP). This abstract describes the co-ordinating role of the Comprehensive Cancer Centre in the implementation and use of the Dutch LCP.

Method – Following the general implementation method of the Comprehensive Cancer Centre the implementation process is supervised by a regional steering committee (RSC) in which a regional co-ordinator (RC) participates. The RC co-ordinates the implementation of the Dutch LCP in eight organisations. In each organisation a local co- ordinator (LC) is part of a local steering committee (LSC) that guides the local process. Local problems are discussed by the LSC with the RC on a regular base. If necessary the RSC is called in by the RC. The RC organises 3- monthly meetings during which LCs are educated and experiences are exchanged. A periodic newsletter informs all professionals involved.

Results – The organisations were prepared for implementation and use of the Dutch LCP by the RC: LCs and LSCs were appointed, local implementation plans were formulated and professionals involved were informed and instructed. Discussion – During the process it became clear that LCs not only have a crucial function but also have a vulnerable position. Therefore input from the RC/Comprehensive Cancer Centre Rotterdam is an important factor in supporting and facilitating the implementation of the Dutch LCP. Thus a solid base is created for use of and research with the Dutch LCP.

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 67 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 68 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 ABSTRACTS OF INVITED LECTURES, ORAL PRESENTATIONS AND POSTERS

9 APRIL 2005 9 APRIL SATURDAY SATURDAY

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 316 A first question in the implementation of than attempt to produce evidence-based Presentation type: Invited clinical audit is to ensure a proper recommendations. Poster number: implementation of the audit into practice. This Pain is still one of the most common symptoms involves not only issues related to selecting the for which patients are referred to palliative care PHYSICIAN TRAINING correct method and mechanism of audit, services. Opioids and their derivatives have IN PALLIATIVE MEDICINE according to the needs of the organisation. been used for managing pain since almost the Second, there is the question as to whether the beginning of time and despite the wide Marilène Filbet, Hopital Geriatrique Du Val audit improves outcomes for patients and distribution and promotion of the WHO D’Azergues, Alix, FRANCE, Frank Elsner, families. guidelines (WHO, 1986) there is still a lack of Universitätsklinikum Aachen, Aachen, education and understanding within the GERMANY However, audit can encompass a wide range of general community about how and when activities. These range from audits focussed on opioids should be used. For this reason the RSC The physician training in palliative medecine is single topics, for example the use of postcards to decided that the topic for the first expert a priority for provide the best quality of care for aid communication, audit of out of hours working group would be ‘routes of the patients and family. activity, audits of the management of individual administration of morphine’. This group According to the tree level of Care in palliative symptoms or of the use of particular drugs, to published a report: “Morphine in cancer pain: medecine, three level of training (A, B, C) will audits that focus on regional or national modes of administration”. (BMJ 1996; 312: be defined. The objectives, the teaching networks of organisations, or components of a 823–826). Since 1996 there have been a number methodes and the content of the training particular service. Equally audits can measure of significant changes in this field of programme wiil be proposed at the european aspects related to the structure (e.g. the therapeutics and in particular various level. For achieve this work an EAPC Task force resources and staffing), the process (e.g. the alternative opioid analgesics have been is meeting since 2002. After a study of the activities), or the outcomes (pain, symptoms, introduced in different parts of the world. situation in european country, for the quality of life) of care. Different types of audit pregraduate training and the post graduate require different methods of implementation training, The EAPC task force propose a and have different effects on the staff. Abstract number: 322B recommendations for physician training in Presentation type: Invited palliative medecine. This ‘Meet the Expert’ session will invite Poster number: The objectives the content and the teaching participants to discuss issues that they have methodes for the pregraduate and post graduate encountered in implementing audits in these The EAPC recommendations on opioids programme will be discuss during the session. areas and review the potential effects of treatment – part 2 different types of audit. Geoffrey Hanks, Bristol Haematology & Abstract number: 318 Oncology Centre, Bristol, UK, Dr. Franco De Presentation type: Invited Abstract number: 321 Conno, National Cancer Institute of Milan, Poster number: Presentation type: Invited Milano, ITALY Poster number: Centres of Excellence in Palliative Care – The expert working group on opioids was How to Define and How to Establish Audit in palliative care – does it work? reconvened to update its guidelines. Twenty new recommendations were produced and each Frank Ferris, Medical Director, Palliative Care Carl Johan Fürst, Stockholms Sjukhem one was graded according to the quality of Standards/Outcomes, San Diego, U. STATES, Foundation, Stockholm, Sweden evidence to support it. The recommendations Xavier Gómez-Batiste, Institut Català are published in the paper: “Morphine and d’Oncologia, Barcelona, Spain Concepts such quality control, evidence based alternative opioids in cancer pain: the EAPC practice, quality assurance, quality registration, recommendations” British Journal of Cancer Around the world, palliative care has developed total quality management and standards needs 2001; 84: 587–593. It is now more than five from many different roots. While everyone to be clarified to able to throw light on “audit” years since the recommendations were providing palliative care strives to relieve and answer the question of the title of this produced and it is appropriate to review them suffering and improve the quality of patients’ presentation. Conditions for successful audit again and examine what is still relevant and and families’ lives, there is considerable and pitfalls to avoid will be discussed and what should be changed on the basis of new variability in the way palliative care is delivered. exemplified. evidence. Some services provide care only at the end of a For a percentage of patients (10–30%) the person’s life. Others provide care throughout above mentioned recommendations do not the experience of chronic and life-threatening Abstract number: 322A achieve successful pain management, defined as illness and bereavement. As palliative care Presentation type: Invited adequate pain control without excessive adverse becomes a recognized body of knowledge and Poster number: effects. A new expert working group was skill, and it becomes much more prevalent convened to consider the topic ‘What to do throughout healthcare, the need for The EAPC recommendations on opioids when oral morphine fails in treatment of cancer consistency and quality in the care that is treatment – part 1 pain: Critical assessment of the strategies’. The provided and the need for ‘Centres of group produced the paper: “Strategies to Excellence’ will grow. During this session, in Geoffrey Hanks, Bristol Haematology & manage the adverse effects of oral morphine. addition to ‘meeting the experts’, participants Oncology Centre, Bristol, UK, Dr. Franco De An evidence–based report. N Cherny, C will be challenged to consider: How do you Conno, National Cancer Institute of Milan, Ripamonti et al and the Expert working Group define a ‘Centre of Excellence’ in palliative care? Milano, Italy of the Research Network of the EAPC. Journal of How and where should ‘Centres of Excellence’ Clinical Oncology 2001; 19(9): 2542–2554. This be established? Are they built on quality In palliative care there remain large areas of work presents evidence-based improvement activities? Are there specific clinical practice which are based on clinical recommendations for clinical-practice and gives criteria or components? Case examples from experience rather than high quality evidence emphasis to careful evaluation in order to both Catalonia and Southern California will and many medical problems do not have a distinguish opioid induced adverse effects from illustrate some of the possibilities. sufficiently mature evidence base from which comorbidity, dehydration, or drug interactions. to derive reliable guidelines. Thus many Four different approaches to the management controversial issues remain unresolved. The of opioid adverse effects are described, but once Abstract number: 320 Research Network Steering Committee (RSC) of more it is apparent that the evidence-base for Presentation type: Invited the EAPC has organised expert working groups these strategies is poor. In these sessions we Poster number: on a number of such topics. Experts have been shall review the EAPC work on opioids and invited to review all of the available clinical and reassess the evidence base and progress in Audit in Palliative Care – does it work? scientific data with generally the aim of extending it over the last ten years since the first achieving some consensus and creating clinical meeting of the Opioids Expert Working Group. Irene J Higginson, Department of Palliative Care guidelines. In the absence of a ‘best’ approach, and Policy, London, UK clinicians need to know of the range of available options, their potential risks and Clinical audit is the systematic critical appraisal benefits, and the clinical and pragmatic of the quality of clinical care, including the considerations that enable a choice to be made procedures used for diagnosis and treatment, between them. If an expert working group the use of resources and the resulting outcome concludes that the current level of evidence and quality of life for the patient. Clinical audit does not lend itself to the development of can involve all professionals in the clinical guidelines, then they will collate the multidisciplinary team, and volunteers. data in the form of a pragmatic report rather

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Abstract number: 323 Competent practice can only be achieved if forward by doing magnificent studies ‘on a Presentation type: Invited education programs can be easily accessed. shoestring’. This seminar’s topic is ‘Getting Poster number: The role of a nurse practitioner in palliative started’. Here are some empirical rules of care.in an oncology clinic engages primarily in thumb: (i) find something that you are really Nursing care – what is the the clinical component of the role. The excited about: be it symptom control, optimal standard? emphasis is on symptom management, patient psychological distress, psychosocial or spiritual and family education and counselling, care – whatever truly catches your mind, that’s Sheila Payne, Palliative & End-of-Life Care coordination of care and maintaining what you should do research on; (ii) ask a Research Group, Sheffield, GREAT BRITAIN continuity of care. definite, concrete, clinically relevant question A recently completed UK study regarding that interests you and that has not been Nurses have helped shape palliative care by clinical nurse specialists in palliative care, answered previously by convincing, well- establishing and developing services, leading defines the role here as being based on 5 conducted studies (check the literature educational and research programmes. Most distinct areas of concern: clinical, consultative, carefully!); (iii) start with a small project (no palliative care nursing is delivered by general teaching, leadership, and research. project is too small, but a lot are too big); (iv) qualified nurses. These nurses need to be aware Palliative nurses must adapt and develop don’t let anybody discourage you with of the principles of palliative care; including services and tailor them to local conditions. statements such as ‘This is uninteresting’ (no attention to the physical, psychological, social This requires a great deal of nursing expertise. clinically relevant question ever is), ‘This and spiritual care of patients and their families, A study undertaken by the Royal College of subject can not be studied scientifically’ (why and know how to access additional support in Nursing on expertise in nursing practice not?), ‘Lots of people have worked on this dealing with complex problems. Nurses with proposes that expertise tends to be understood before’ (maybe, but if the question is still open, additional qualifications and expertise in from traditional and dominant discourses of there must be a reason), ‘This will not advance palliative care are described as specialist medicine, management and technology which your career’ (so what?); (v) if you can, go visit a palliative care nurses. These nurses may work in automatically involves competent nursing place near you where they do good Palliative hospitals, hospices or in the community both research. Care research – you will learn a lot and you will to provide direct care to patients and families. make valuable connections that will be helpful Many of these nurses work independently but for your project; (vi) find allies in your some are part of multidisciplinary teams. The Abstract number: 325 institution – it’s hard to work alone – preferably role of specialist palliative care nursing is varied Presentation type: Invited from other professions as well as your own, and and complex and includes symptom control Poster number: at all hierarchical levels (don’t be afraid to ask); and supportive care for patients and families, (vii) be creative when thinking of who might co-ordination and communication between Research in Palliative Care – How sponsor the study. Depending on the local 9 APRIL other services, empathy and respect to the To Get Started specifics, charities, research boards, intramural dignity and preferences of those in their care. starter grants, wealthy people with a personal Nurses need to be aware of cultural diversity Eduardo Bruera, Department of Palliative Care connection to Palliative Care and more can be and the social implications of death, dying and & Rehabilitation Medicine, Houston, Texas, relevant sources of funding; (viii) basically, if bereavement. In this session, we will discuss: USA you love what you do, and if you can find good Roles and competences of a specialist palliative people to help and support you, you’ll do great. care nurse, including: • Palliative care expertise The majority of palliative care programs emerge Good luck! SATURDAY – Knowledge and application of knowledge. • as clinical programs. Some of these programs Communication – Skills with patients, families, are based in academic institutions and others and multidisciplinary team. • Collaboration – are predominately community based. Some of Abstract number: 327 Working with multidisciplinary team members, the most common barriers to research by Presentation type: Invited family carers and other professionals. • palliative care program include limited time Poster number: Advocacy – For patient and family and for protection for planning, conducting, and palliative care services. • Evidence based reporting research, lack of methodological Bereavement, grief and the practice – Participation in continuing expertise and support, and lack of funding to clinical response professional development, education and conduct research. On the other hand, some of research. • Professional nursing – Practising the major advantages include a unique patient DAVID KISSANE, PSYCHIATRY & BEHAVIORAL ethically, honestly and delivering ‘best practice’ population and the limited amount of previous SCIENCES, NEW YORK, U. STATES to all. knowledge. This allows palliative care programs to be able to conduct innovative research with In their meta-analysis on caregiver and family limited resources. Initial projects should be outcomes from palliative care, Higginson and Abstract number: 324 conducted under the mentorship of colleagues (2003) failed to identify any Presentation type: Invited experienced researchers so as to appropriate significant benefit [13 studies, weighted mean Poster number: plan studies and to prevent disappointment. 0.17]. One Norwegian study randomized Early projects should be limited to retrospective patients to receive a comprehensive program of Nursing Care: what is the studies, literature reviews, case reports, and palliative care or conventional oncological care optimal standard? short pilot studies. Prospective clinical trials and and discerned no difference in bereavement complex interventions such as surveys or outcome despite the efforts of the palliative care Annette Welshman, Bradford-on-Avon, UK translational research should only be attempted program to achieve this (Ringal et al., 2001). Yet after the research team has had some exposure the public health consequences from In order to attempt to ascertain what an optimal to the research process. The availability of bereavement in increasing mortality and standard in palliative care nursing, it is electronic communication has made it possible morbidity have long been recognized (Stroebe immediately clear that an expertise in skill mix for mentoring to occur from great distance. This & Schut, 2001). Harding & Higginson (2003) is required provides a unique opportunity for clinicians concluded that greater promise lies with Most of us would argue that this skill working in remote areas or communities to be targeted interventions that identify a description is an extension of all the able to conduct exciting research. Practical significantly distressed or depressed subsample fundamental skills any nurse should have. examples of barriers and solutions will be of carers and explore the benefits of Some Canadian colleagues submitted a presented. intervention on outcome for these high risk beginning list of seven critical nursing individuals. This approach delivers continuity behaviours in care of the dying and identified of care to the bereaved, and corresponds with this in a qualitative study. Behaviours identified Abstract number: 326 our model of targeting high risk families. In our after content analysis of transcribed interviews Presentation type: Invited Family Focused Grief Therapy (FFGT) trial, were: Poster number: randomization assigned 53 families (233 ● Responding during the death scene individuals) to FFGT and 28 families (130 ● Providing comfort Research in Palliative Care – individuals) to usual palliative care. FFGT ● Responding to and enhancing personal Getting Started reduced distress significantly at 13 months growth bereavement (p=0.02), with highly significant ● Responding to colleagues Gian Domenico Borasio, Munich University reductions in measures of distress and ● Enhancing quality of life during dying Hospital – Grosshadern, München, GERMANY depression for those individuals with high ● Responding to the family baseline scores. Improvement was noteworthy Tighter budgetary control by health services To paraphrase an old joke, research in Palliative for families with a sullen class of family is leading to a rationing of services, with Care is a little like teen-age sex: everybody talks functioning; depression was unchanged in palliative nurses being expected to carry out about it, but nobody knows how to do it hostile families. FFGT has the potential to duties involving a vast skill mix. properly. Well, ok, it’s not quite so bad. There prevent complicated grief, but care is needed to Some publications describe the lack of have been a number of pioneers like Eduardo avoid greater conflict in hostile families. specialised training in palliative nurses. Bruera who have greatly moved the field Palliative Care strives to support caregivers

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during bereavement. A combination of indicate a reason for care. In 2003, the gastrointestinal absorption or significant individual, group and family approaches to care Norwegian health authorities decided to grant a protein loss. The metabolic features are is necessary for a program to be comprehensive, separate, additional reimbursement when this different to those seen in primary cost-effective and yet targeting those in need. category was used, in order to create a financial anorexia/cachexia syndrome. The second group More research is needed to provide the evidence incentive to establish more palliative care teams is characterised by loss of muscle mass through base for such interventions. and units in hospitals. However, despite advice prolonged inactivity or microgravity, both from the palliative care community, no specific defined as deconditioning. The third group conditions were required for the hospitals to be describes several catabolic states caused by acute Abstract number: 328 allowed to use this category. As a result, the or chronic infections or chronic heart, lung or Presentation type: Invited demands for reimbursement were excessive. To renal disease. Many patients with Poster number: make the system work as intended, several anorexia/cachexia present with several of the criteria for the use of category Z51.5 were mentioned secondary factors and overlapping The volunteer in palliative care: a clearly established in 2004. These criteria are based on primary anorexia/cachexia syndrome. Despite defined role? the new Norwegian Standard for Palliative Care, the difficulty to sometimes separate primary and require that a palliative care service has from secondary cachexia it is important to Monica Muller, Zentrum für Palliativmedizin, been organised according to detailed recognise causes of secondary cachexia as many Bonn, GERMANY specifications for staffing and clinical content. of them are reversible. In these patients Linking financial reimbursement to specific nutritional support needs to be considered. It is indisputably recognised that volunteers and conditions for palliative care teams and units voluntary work respectively is one of the will hopefully encourage the development of bedrocks of palliative medicine and hospice new services, as well as improve the quality of Abstract number: 335A care. Voluntary work is part of all care concepts the care. Presentation type: Invited in this field, organisations and institutions Poster number: proudly present their on average high numbers of voluntary workers to the public, and the Abstract number: 333 Clinical status – current measures degree of the contribution of voluntary work to Presentation type: Invited (Presentation in the session) an organisation serves as an indicator of its Poster number: quality and a precondition for successful public Florian Strasser, Oncology & Palliative grant applications. Pathophysiology and assessment Medicine, Oncology/Hematolog, St-Gallen, In the field of voluntary work, however, some emphasizing specific clinical formats SWITZERLAND problems have been recently increasing, i.e. – It is no longer self-evident, that services and Neil MacDonald, Université McGill, Montreal- Among the nutritional issues in the palliative institutions want to work with volunteers; Quebec, CANADA care context loss of appetite and malnutrition – Voluntary workers decline to take part in are important and frequent problems for both assessment and qualification measures Anorexia–cachexia and the oft associated patient and relatives. The interdisciplinary (personal dedication vs. formal or problem, fatigue, are the most common outline of the patients’ actual and individual professional requirements); physical symptoms which afflict patients and clinical status including patients’ views form – Volunteers feel that their expectations are families towards the end of life. There are the base to decide on current measures to being disappointed and give up; common pathophysiologic features which alleviate anorexia and cachexia and their – Helper’s disease seems to become a new characterize anorexia–cachexia across a broad consequences. Measures include epidemic; range of chronic illnesses. Aberrant pharmacological (progestins, corticosteroids, – Volunteers are being misused to replace inflammation and, less clearly defined, changes prokinetics, omega-3-fatty acids, anabolic professionals; in the hypothalamic/pituitary axis are often steroids, cannabinoids, anti-inflammatory – There are political tendencies with regard to noted in wasting patients. agents, others), nutritional (oral supplements, an implementation of obligations for the While anorexia–cachexia has devastating enteral & parenteral nutrition), behavioural improvement of the social security of personal and societal costs and is a principal (relieve of eating-related distress [ERD]), and volunteers; source of family distress, it has received little other non-pharmacological interventions (i.e., – The dying and their family members do not attention from researchers and health mouth care). With this presentation the wish to be exposed to too many caregivers; professionals. In some part this participants should be enabled 1) to better and many others. disproportionate approach reflects the common understand the effects (and non-effects) and It seems necessary to reconsider current view that little can be done to combat cachexia. time required to achieve the desired outcomes concepts of voluntary work; appropriately by Today, while our understanding of its of the main measures to alleviate anorexia, reflecting and adapting the self-image and the pathophysiology remains imprecise, sufficient cachexia, and ERD in the palliative care context, public image of voluntary work, re-defining its knowledge is available to inform specific 2) to depict a practical goal-directed care plan role and developing appropriate measures for programmes directed towards for patients with the main types of primary and qualification, control and care for the carers. anorexia–cachexia. These programmes, in order secondary anorexia/cachexia in advanced as The guiding principle of this process should be to be successful, must be available to patients well as terminal stage of the disease, 3) explain an improvement of collaboration of volunteers with newly diagnosed anorexia–cachexia. Such patients and relatives the main reasons for the and professionals in order to ensure the best programmes illustrate the WHO definition of (non-) elements of the care plan and the main possible care for those who are in need of the palliative care which calls for efforts to identify (non-) outcomes (ERD of both patient and services of palliative medicine and hospice care. and prevent sources of human suffering before relatives, symptoms [i.e., anorexia, nausea, they become manifest. fatigue, bothering edema], strength & function, complications of malnutrition [wound & Abstract number: 331 mouth care], nutritional intake, body Presentation type: Invited Abstract number: 334 composition) targeted. The better Poster number: Presentation type: Invited understanding of the clinical status and of the Poster number: effects and non-achievable effects in the Reimbursement linked to conditions for expected time period of the main measures to care. An example from Norway Secondary anorexia and cachexia in alleviate anorexia, malnutrition, and ERD may cancer patients help to avoid both futile hyperactivity and Dagny Faksvaag Haugen, Haukeland University neglect and achieve a goal-directed best care Hospital, Bergen, Norway Claudia Bausewein, Klinikum der Universität until death. München – Großhadern, München, GERMANY DRG (Diagnosis Related Groups) classification is perhaps the best known and most widely used Based on etiological factors cachexia and Abstract number: 335B form of Casemix classification. As DRG anorexia are typically categorized as primary Presentation type: Invited reimbursement is based on average costs, (metabolic) and secondary (starvation) in Poster number: specialist palliative care units may be nature. Secondary cachexia develops as a result disadvantaged, due to complex patients in need of a functional deficit that prevents ingestion of Cachexia and Anorexia in palliative care of advanced medical and nursing care and often adequate calories and nutrients. Secondary prolonged hospital stays. Accordingly, financial cachexia can be divided in three groups. Florian Strasser, Oncology & Palliative incentives are needed in order not to Starvation and malnutrition form the first Medicine, Oncology/Hematolog, St-Gallen, undermine access to care for this patient group. group of secondary cachexia. They develop SWITZERLAND The International Classification of Diseases from impaired oral intake through (ICD-10) contains one category called gastrointestinal symptoms such as nausea, The session on Cachexia and Anorexia in “Palliative Care” (category Z51.5). This belongs vomiting or constipation, other uncontrolled Palliative Care aims to attract a mixed- to a group of categories intended for use to symptoms (pain, depression), impaired professional audience interested in practical

72 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

issues of patient and family care and in current Discussion. Building on a literature review and a be a general understanding that spirituality is research supporting the main messages. One phenomenological enquiry into the essence of more than a matter of socialisation within third of the presentations and session time is spirituality, an inclusive conceptual model has certain cultures or the death-related rituals . assigned for facilitated discussion with the been constructed of the spiritual domain. This Spirituality may also not necessarily be identical participants. After an introduction and case model acknowledges: the dynamic relationship with a person’s religious affiliation. It may even presentation four presentations are given: 1) between Self, Others and the Cosmos that gives surpass it or be something very different. We ‘Pathophysiology and assessment emphasizing rise to the big questions of life; the spiritual also know that more than any other dimension specific clinical formats’ by Neil MacDonald, 2) activities of becoming, connecting, of care, the spiritual dimension in particular has ‘Secondary anorexia and cachexia’ by Claudia transcending and finding meaning; and the a major impact on the biography of Bausewein, 3) ‘Clinical status – current place or absence of religion. In the light of this professionals and other caregivers and it affects measures’ by Florian Strasser, and 4) ‘From inclusive model, the author has sought to their individual concepts of meaning, their theory to practice: so what?’ by Steffen identify the spiritual dimension of palliative understanding of the where-from and where-to Eychmüller. The last part of the session is a care in CEE/FSU countries. Using a mixed- of life as well as their questions and answers round table of the 4 speakers, who discuss the method design data were gathered by means of with regard to the possible meaning of case and two models (presented by the session 51 recorded interviews with 42 ‘palliateurs’ and suffering. chairs) of approaching the problem together 19 email questionnaires; total countries n=14. The permanent challenge, however, is to with the participants. The learning objectives of The findings indicate: a) the presence of a address the following problems in a way that the session are 1) to understand the main continuing spiritual pulse b) a focus on death as goes beyond cognitive understanding: pathogenetic mechanism leading to loss of a spiritual mystery c) a commitment to spiritual How can we communicate about these appetite and malnutrition and psychosocial care from both religiously active and inactive subjects without infringing a patient’s privacy factors contributing to eating-related distress in ‘palliateurs’ d) the re-discovery of a spiritual and/or neglecting the protection of our own patients with advancing, incurable disease and memory among dying patients. These issues privacy in our role as carers? How can we distinguish specific clinical formats, 2) to will be briefly explored in relation to three possibly learn to communicate about these describe practical assessments having the emerging themes: the irrepressible nature of matters at all? And, for us lecturers, how can we potential to influence multidimensional human spirituality; transcendence in the face of possibly raise these questions and subjects in outcomes relevant for palliative care, 3) to mortality: and respect for the intrinsic value of motley seminar groups in a sensitive manner, understand the effects and time required to human beings. protecting our own personal space and allowing achieve the desired outcomes of the main others to protect theirs as well as, at the same measures (pharmacological, nutritional, token, enabling a kind of closeness and open behavioural, and other non-pharmacological) Abstract number: 338 relationship that achieves both spiritual and to alleviate anorexia, cachexia, and eating- Presentation type: Invited cognitive learning and balanced understanding 9 APRIL related distress in the palliative care context. Poster number: for the members of the seminar group and ourselves? Psychical and spiritual care of Holocaust Abstract number: 336 survivor hospice patients at the Jewish Presentation type: Invited Charity Hospital, Budapest Abstract number: 340 Poster number: Presentation type: Invited

Katalin Hegedus, Dept of Bioethics, Budapest, Poster number: SATURDAY From theory to practice: so what? HUNGARY The spiritual care of the family, how can Steffen Eychmueller, Head Palliative Care Unit, Introduction: Most of the Budapest’s 80 000 ideas from family therapy be developed to Dept Internal Medicine, St. Gallen, Jews are elderly people, Holocaust survivors, give help to family members SWITZERLAND often ill and living alone. Nearing the end of their lives afflicted with disasters and Pam Firth, Hertfordshire, GREAT BRITAIN The participant should be empowered to humiliation, they have to face their deaths all- construct an own practical approach in the alone. In 2001 a mobile supportive hospice Introduction management of cachexia and anorexia by · team was set up in the Charity Hospital of the Spirituality is difficult to define but for the discriminating factors that are clinically Federation of Hungarian Jewish Communities purpose of this presentation the author will relevant (and potentially reversible) and those in Hungary. Experiences: Earlier neither focus on the idea that the spiritual dimension of more scientific significance (knowledge psychologist nor social worker were employed at of a person’s life includes meaning, value and level) · acknowledging factors of the clinical the hospital. The hospice concept was worth. However most hospices and specialist setting in which the patient is treated which completely unknown and the hospice team was palliative care units provide family based care, may interfere with any decision making on received with suspicion by the hospital staff so does that include the spiritual care of the nutrition (organisational aspects) · applying a saying ‘hospice philosophy is against Jewish family and if so, how can that be achieved? practical approach how to proceed in the care of spirituality’. Members of the hospice team were the patient (When, how, how long) (skills level) face of the multiple traumas of Holocaust Discussion and by respecting factors that may influence survivor hospice patients namely such as age, Members of the multi-professional team who any decision making about nutrition in far illnesses, fatal illness; horrible experiences, provide psycho-social and spiritual care advanced illness (attitude level). suppression, silences, non treated losses, crisis increasingly use ideas from family therapy to of Jewish identity during the communism; loss help them understand generational patterns of of home, loss of human dignity (control of behaviour and problem-solving. Commonly, Abstract number: 337 body function, abilities etc.), loneliness, families are encouraged to think about the rules Presentation type: Invited hopelessness. Most of members of the hospice and beliefs which govern how they live their Poster number: team are from the second generation of lives. New understandings can be used to Holocaust survivors, with some psychic, challenge behaviour which is causing SPIRITUALITY: INCLUSIVE AND spiritual and identity problems also. It was a emotional pain or restricting the radical change IRREPRESSIBLE? challenge for them to acquire or learn again in family life that is required when a family approach of dying patient’s care of Judaism, to member is terminally ill. Michael Wright, International Observatory on provide psychosocial and spiritual care, help the The author has extended her exploration End of Life Care, Lancaster, GREAT BRITAIN patients reviewing and evaluating their life, about family belief systems to include the coping with fears and anxieties, treating losses. discussions about the family’s ideas about Background. In the debate surrounding the This intensive work helps caregivers to solve worth, value, suffering, the meaning of life and nature of spirituality, a view has emerged that their uncertainties in this field. illness. The discussion will be illustrated by two spirituality is a universal human attribute which case examples in which the patient and family may be religiously or non-religiously expressed. members describe their family’s beliefs. In the countries of Central/Eastern Europe Abstract number: 339 Insights gained from this exploration were (CEE) and the Former Soviet Union (FSU), Presentation type: Invited then used by the patient, family and multi- spiritually inclusive hospice and palliative care Poster number: discipline team to provide terminal care in a services have become established since the hospice in which the spiritual needs of the collapse of communism. Yet against a Teaching and Providing Spiritual Care patient and the immediate family were background of long-standing ideological addressed. repression of religion, little is known about how Monika Muller, Malteser Krankenhaus Bonn, spiritual care is viewed and delivered by these Bonn, Germany services. Two questions emerge: What is the nature of spirituality? How is the spiritual The spiritual dimension is indisputably dimension of palliative care being articulated recognised as one of the four main pillars of and delivered in CEE/FSU countries? palliative care for the dying. There also seems to

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 73 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 341 nature and its ability to add to social theory. everyday social interactions are negotiated and Presentation type: Invited The cyclical nature of reflection and action play managed, and 2) ‘Foucauldian discourse Poster number: a vital role in the whole process. Action research analysis’ which draws upon post-structuralist is not as simplistic as its name would suggest writers including Foucault to examine how Using ethnography in palliative and is not for the faint hearted! ‘Collaborative language constitutes social and psychological care research learning groups’ following residents’ deaths in experience. Discursive approaches regard nursing homes will be used as a way of interview responses as evidence about how Jane Seymour, School of Nursing and illustrating as an example of an ‘action cycle’ to people use language to construct that particular Midwifery, University of Sheffield, Sheffield, develop a learning culture around palliative care situation at that particular time. Discursive GREAT BRITAIN in nursing homes. The personal skills of the approaches makes no assumptions about researcher/s become the tool to illuminate consistency of responses in other situations, no A great deal of our knowledge about the differing aspects of both organisational and inferences about intra-psychic processes (how experience of pain and suffering, clinical ‘conflict’ along with working out people think or feel), and explain talk as understandings of death and dying, and the together innovative ways to change practice in a representing a repertoire of ways that people processes and organisation of clinical care, context of time constraints, no education, and have of dealing with questions in social communication and interaction, stems from a shortage of staff predominate; and where dying situations, such as that of an interview. In relatively small collection of ethnographic is peripheral to the overall care environment. discursive approaches, analysis of talk is studies. In these, the researcher became Heron J & Reason P (2001) The practice of co- concerned with individuals’ attempts to deal involved in the daily lives of a particular group operative inquiry: research ‘with’ rather than with their current situation (for example in an of patients or care givers, recorded aspects of ‘on’ people. Eds: P Reason & H Bradbury. In: interview maintaining their credibility as a these lives in a detailed way, and subsequently Handbook of Action Research. London: Sage ‘good’ patient, trying to ‘help’ the interviewer made analytical interpretations that allow us to Publications or complaining). To illustrate these differences, consider the broader implications of these for I will use examples taken from research about palliative care. Ethnographers provide an in bereavement support provided by general depth understanding of sensitive issues that are Abstract number: 343 practitioners and counsellors in the UK, and a difficult to address using other research Presentation type: Invited study of the way death is described by palliative approaches. Although not classically considered Poster number: care practitioners in medical records in the UK. to be ‘ethnographers’, Cicely Saunders and A further example will be provided by an Elisabeth Kubler-Ross made use of many Issues in multi-lingual analysis of ‘Last Offices’ in the procedure ethnographic techniques: they focused on the Qualitative Research manual of a hospital in Australia, which patient’s point of view, they set patients’ revealed how nurses enact the transition accounts within a broader context and they Phil Larkin, Dept.Palliative Medicine, Galway, between life and death in their behaviours and used a range of resources to shed new light on IRELAND language towards the live patient and dead what was the wider message communicated by body. Discourse analysis has not been used the stories they recorded. Best known of the Despite advances in the development of much as an analytic approach in palliative care more formal ethnographies are those of translation/ validation of research tools to research. This paper will discuss it limitations hospitals in 1960s America. From these have measure and quantify aspects of health care in a and advantages in revealing taken-for-granted come our understandings of ‘social death’, multi-lingual context, very limited literature is aspects of social interactions embedded within ‘awareness contexts’ and the paradoxes that available which considers the issues of language. threaten the nurse’s role in caring for dying conducting qualitative interviews in multiple people. Since these classic studies, the languages. The nature of such research indicates ethnographic method has been used in cancer the specific problems of translation and back- Abstract number: 345 wards and clinics; hospices; in the community translation, sensitivity and specificity of the Presentation type: Oral and in the general hospital and even in areas interview question, and the role of interpreters Poster number: like intensive care where patients with palliative for both data collection and analysis. Although care needs often predominate. More recently, the literature has highlighted some of the People with intellectual disabilities and the approach has been applied in a focused way problems in these issues (Bradby 2002, Kapborg their need for cancer information to produce ‘mini-ethnographies’ of clinical & Bertero 2002), little is offered by way of areas. In all these, the stories of patients, carers, solution and particularly when researching a Irene Tuffrey-Wijne, Mental Health (Learning and staff are interwoven, giving a rich sense of palliative care population with the additional Disability), London, GREAT BRITAIN the complexities that make up palliative care. problems that may arise in interviewing This paper explores what is ethnography, and patients at the end of life. Background: Many people with intellectual how it may be used by researchers in palliative This presentation focuses on practical issues disabilities will be affected by cancer in their care, looking particularly at issues of research of conducting multi-lingual research arising lifetime. There is a lack of available knowledge design and process. from an ongoing doctoral study, which explores about people with intellectual disabilities’ and describes the transition experiences of 100 understanding and experience of cancer. patients in 6 EU palliative care centres. In Aims: The aims of the study were to explore Abstract number: 342 particular, the limitations of the standard the use of a cancer information book for people Presentation type: Invited translation/back-translation method will be with intellectual disabilities, and to elicit data Poster number: critiqued and a different method proposed, about the subjective cancer experiences of based on the issue of “cultural competency” people with intellectual disabilities. Using action research to bridge the (Birbili 2003). The challenges of using Methods: This was a qualitative, hypothesis theory/practice gap in palliative care interpreters and the subsequent linguistic generating study. Nine people with intellectual analysis will be described as well as the issues of disabilities who were affected by cancer were Jo Hockley, Education, Edinburgh, GREAT qualitative validity and reliability which arise. A identified using a purposive sampling method; BRITAIN case will be made that the potential benefits of five of these participated in the study. Data multi-lingual interview data about patient’s collection included non-participant observation Action research is a relatively new research experiences in palliative care outweighs the of the use of the book, and semi-structured approach in health care. Its history has its roots challenges of this type of research at the end of interviews. in organisational development during the life. Findings: Data analysis yielded three themes: 1940s/1950s. However, over the last twenty (1) “Nobody told me”: the desperate need for years there has been a considerable re- cancer information; (2) “That reminds me”: awakening of its use in management, Abstract number: 344 telling my own story; and (3) “I don’t know education, community work and nursing as the Presentation type: Invited much about cancer”: the difficulties of the staff complexity of ‘contexts’ is realised. Some would Poster number: supporting people with intellectual disabilities argue that for all we have learnt through to use the book. research it is difficult to get findings into How can discourse analysis be used in Conclusion: The people with intellectual practice and bridge what has come to be known palliative care? disabilities in this study were not provided with as the theory/practice gap. The emphasis with information about cancer. They wanted this action research is not just about gaining Sheila Payne, Palliative & End-of-Life Care information, and appeared to be capable of academic knowledge but about the creative Research Group, Sheffield, GREAT BRITAIN taking it in. Further studies are needed to action of people addressing difficulties within explore the subjective experiences of people their own work situation in order to change This paper will introduce discursive approaches with intellectual disabilities affected by cancer. their practice. It is about doing research ‘with’ from the perspective of health psychology, people rather than ‘on’ people (Heron & presenting two major positions: 1) an approach Reason 2001). The values that underpin action derived from ethnomethodology and research are its participatory and democratic conversation analysis concerned with how

74 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 346 decision was made. Results: The questionnaire Abstract number: 349 Presentation type: Oral was returned by 66 geriatricians (73% response Presentation type: Oral Poster number: rate). All reported about their latest DNR- Poster number: decision. In 29% of the cases the decision was Prognostic disclosure : does the made before or at time of the patient’s Does social support work as a buffer information provided allows cancer admission, in 8% after diagnosis, and in 63% against reactions to external stressful life patients for being aware of the evolution when the condition of the patient declined events such as terminal cancer? of their disease? (34%) or became critical (29%). The physician previously consulted at least one person in 80% Gerd Inger Ringdal, Department of Psychology, Marie-Claude Blais, Psychiatry (psycho- of the cases. In 81% of these cases the head- Trondheim, NORWAY, Kristen Ringdal, oncology), Québec, CANADA, Pierre Gagnon, nurse of the geriatric ward was involved, in 55% Department of Sociology and Political Science, Centre rech. Hotel-Dieu de Québec, Québec, another nurse, in 30% the medical Head of the NTNU, Trondheim, NORWAY, Marit Jordhøy, CANADA, Félix Couture, Hotel-Dieu de Québec, ward, in 26% the GP of the patient, in 43% Unit of Applied Clinical Research, NTNU, Québec, CANADA another physician, in 19% the patient him- Trondheim, NORWAY, Stein Kaasa, Unit of /herself and in 77% the patient’s next of kin. Applied Clinical Research, NTNU, Trondheim, Background: While a body of literature and Conclusions: On acute geriatric wards in NORWAY clinical experience (Loprinzi et al., 2000) Flanders, DNR-decisions are mostly made when suggest to improve patients’ awareness of their the condition of the patient declines or The main aim of this study is to examine the prognosis, some studies underline the low becomes critical. (Head-)nurses and the relationship between social support and anxiety percentage of patients who have been told their patient’s next of kin are often consulted, the and depression, and coping with stress. Our prognosis. Moreover, it is unclear how patient and his/her GP rather rarerely. Further hypothesis is that patients who reported high prognostic information is aknowledged or research is needed to explain these findings and degree of social support will do better in terms understood whenever it is provided. This study to investigate if low patient participation is the of coping with stress and experience less anxiety aims to (1) document the prognostic result of the clinical condition (e.g. and depression, than patients with low degree information given in cancer outpatient incompetence) of the patient at the time of the of social support. Methods: The sample consultations and the patients’ preference for decision making. comprised of 434 patients at the Palliative this information (2) verify patients’ level of Medicine Unit (PMU), University Hospital of prognostic awareness. Methods: Data from self- Trondheim. The patients completed a report questionnaires and audiotapes of Abstract number: 348 questionnaire monthly including questions medical consultations with oncologists were Presentation type: Oral about social support, based on the MacAdam’s collected among 40 outpatients with either Poster number: Scale of assessment of suffering; coping with 9 APRIL colo-rectal, breast, or ovarian cancer. Results : stress, measured by the Impact of Event Scales Overall, patients perceived they receive a large Consultation of the parents in actual end- (IES avoidance and IES intrusion); and anxiety amount of usefull information in regards to of-life decision-making in neonates and and depression, measured by the emotional many aspects of their disease. Chances of infants: a population study functioning subscale in the EORTC QLQ-30. survival are openly discussed in only 60% of Results: Regression analyses of the three cases, while a majority of patients (80%) express Veerle Provoost, Department of Medical dependent variables at two time points were a preference for such information. Moreover, Sociology, Brussels, BELGIUM, Filip Cools, performed. Although our hypothesis was not SATURDAY 55% of patients still incorrectly state the extent Department of Paediatrics, Academic Hospital, supported at the baseline assessment, it was of their disease, which is particularly true Free University of Brussels, Brussels, BELGIUM, supported at the second assessment, two among patients having a poor prognosis. Freddy Mortier, Centre for Environmental months later. The results show that the Discussion: Given the importance of prognosis Philosophy and Bioethics, Ghent University, regression coefficient of the social support awareness for enabling patients and relatives to Ghent, BELGIUM, Yvan Vandenplas, variable has the predicted sign for all three make informed treatment and life decisions, Department of Paediatrics, Academic Hospital, dependent variables and the relationships are these results call for the development of Free University of Brussels, Brussels, BELGIUM, statistical significant at the 0.05 level for the innovative tools to improve, systematize, and Luc Deliens, Department of Medical Sociology, emotional functioning subscale (b=0.21, t=2.63, facilitate prognostic communication without Free University of Brussels, Brussels, BELGIUM p<.01), and for the IES avoidance subscale inducing unnessecary distress. (b=–0.19, t=–2.25, p<0.03), but not for the IES Objective: To assess how frequently actual end- intrusion subscale (b=–0.11, t=–1.35, p<0.18). of-life decisions with a possible or certain life- Thus, patients with high social support Abstract number: 347 shortening effect in neonates and infants, were experienced significantly less anxiety and Presentation type: Oral discussed with parents, and to determine depression and they reported significantly Poster number: whether consultation of parents is associated better coping, in terms of lower scores on the with type of decision, (clinical) characteristics of avoidance subscale, than patients with low DNR-DECISION MAKING ON the patient, and sociodemographic degree of social support. Conclusions: Our ACUTE GERIATRIC WARDS IN characteristics of the physician. Methods: A results on the second assessment indicate that FLANDERS, BELGIUM retrospective study of all deaths of live born social support might work as a buffer against neonates and infants was conducted in reactions toward external stressful life events Cindy De Gendt, End-of-Life Care Research Flanders, Belgium. For 292 of all 298 deaths in a such as terminal cancer. Group, Brussels, BELGIUM, Johan Bilsen, End- one-year period (1-8-1999 until 31-7-2000) the of-Life Care Research Group-Vrije Universiteit attending physician could be identified and was Brussel / Centre for Environmental Philosophy sent an anonymous questionnaire. Results: The Abstract number: 350 and Bioethics-Universiteit Gent, Brussels / response rate was 86.6% (253/292). The end-of- Presentation type: Oral Ghent, BELGIUM, Margareta Lambert, Geriatric life decision was discussed with parents in Poster number: Unit-AZ VUB, Brussels, BELGIUM, Nele Van Den 83.8% (114/136) of all cases where one was Noortgate, Geriatric Unit-UZ Gent, Ghent, made. For cases where treatment was withheld Getting the message across: BELGIUM, Luc Deliens, End-of-Life Care or lethal drugs were used, parents more adaptive communication strategies in Research Group-Vrije Universiteit Brussel / frequently had an explicit request, compared to palliative care Department of Public and Occupational Health- cases where treatment was withdrawn, or EMGO-Institute-VU Medical Centre (The opioids were used (in dosages) with a Anita Sargeant, Palliative & End-of-Life Care Netherlands), Brussels / Amsterdam, BELGIUM potentially life-shortening effect (14/29 versus Research Group, Sheffield, GREAT BRITAIN 21/107, p=0.012, and 9/17 versus 26/119, Objective: According to good clinical practice p=0.015). When lethal drugs were used, parents Background: Effective communication between physicians making do-not-resuscitate decisions initiated the discussion more frequently, hospice, hospital and community teams is (DNR) should previously and in time consult compared to the other types of decision (8/14 essential for good quality care. UK government the patient, his/her family members and other versus 18/102, p=0.003). When parents were not policy seeks to improve care through improved healthcare workers. In this study we investigate consulted, the decision was based less communication. Aim: identify how different the characteristics of the DNR-decision-making frequently on quality-of-life considerations communication strategies are used and adapted process among elderly in acute geriatric wards. (2/22 versus 39/114, p=0.001), and there were to provide information between hospice, We gather information about when the more cases where there was probably no life- community and acute hospital settings. decision was made, and who previously was shortening due to the decision (according to Method: A 6-month ethnographic study was consulted. Method: A structured mail the estimation of the physician) (15/22 versus undertaken within a NHS specialist palliative questionnaire was sent to the 91 geriatricians, 15/114, p<0.001) than in cases where parents care service in the UK. Observations of responsible for acute geriatric wards on all were consulted. Conclusions: Parents are communication including verbal, non-verbal hospital campuses in Flanders, Belgium. We frequently consulted in end-of-life decision- and written took place within the hospice, asked them about the decision-making process making for their child, especially for decisions community and hospital teams. Interviews were concerning their last patient for whom a DNR- based on quality-of-life considerations. undertaken with 41 staff, 20 patients, 7 carers

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 75 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

and 8 stakeholders to explore the effect of Abstract number: 352 recorded. Some who entered the study were on communication on care. A hermeneutic Presentation type: Oral multiple opioids or given opioids by multiple analysis was undertaken. Data were coded and Poster number: routes. Results: 132 of 195 (67%) cancer patients key themes identified. Results: –Informal face to had pain; 54 of 132 (39%) were rotated. 13 (9%) face social chatting was the most common form Pain therapy for cancer patients in the had a second rotation, 4 a third and 1 a fourth of communication used in the hospice between palliative phase – a systematic review rotation. Reasons for rotation were: 1) staff and with patients –A majority of ineffective pain control (31%), 2) opioid side- communication and decision making occurred Sebastian von Hofacker, Region. Centre of effects (25%), 3) both (21%), 4) convenience outside of formal multidisciplinary meetings Excellence for Palliative Care, Bergen, NORWAY, (12%), 5) cost (10%), 6) neuropathic pain –Conversations by telephone and written Ulf Kongsgaard, Dept. of Anaesthesia and (10%). The pre-rotation opioid was oxycodone documentation was most common in the Intensive Care The Norwegian Radium (48%), morphine (27%), fentanyl (19%), community between health professionals –A Hospital, Oslo, NORWAY, Anita Lyngstadaas, (3%), methadone (2%), and combination of formal conversation and social Norwegian Health Services Research Centre, other opioids (10%). Most rotations were to chatting was used in the hospital supported by Oslo, NORWAY morphine (54%) or methadone (31%). 13 written documentation –Traditional hierarchies second rotations were to morphine (7), shaped the style of communication within the Objectives: Seventy to 90% of cancer patients methadone (3), or fentanyl (3). Routes of community and hospital and the type of have pain in the palliative phase of their administration were usually either oral or information provided. Conclusions: –Social disease. Pain severely impairs health related intravenous; 2 patients received subcutaneous chatting is a taken for granted component of quality of life and is the single most feared infusions. Conclusion: Opioid rotation were everyday conversation, central to providing symptom in cancer patients. The main objective required in nearly 40% of our patients either for ongoing personalised care within a hospice was to assess the clinical effectiveness of reasons of ineffectiveness, side-effects or both. –Communication that’s flexible and open medication and radiotherapy in the palliative Most were rotated once. rather than restricted and periodic enables care treatment of cancer-related pain addressing to be responsive to change –Health policy that pain relief, pain prevention and adverse effects requires service evaluation that measures the as the outcome measures. Methods: A Abstract number: 354 numbers of formal meetings held by a service systematic literature search was undertaken to Presentation type: Oral fails to account for the importance of informal identify systematic reviews and newer studies Poster number: communication networks as central to published between 2001 and 2003. Two maintaining continuity and flexibility central reviewers assessed each publication according EFFICACY OF GRANISETRON AND to palliative care to criteria defined by protocol for evaluating DEXAMETASONE FOR ANTIEMETIC relevance, quality, and validity. Two systematic CONTROL IN NO SURGICAL MALIGNANT reviews from the US-Agency for Healthcare BOWEL OBSTRUCTION: PHASE II Abstract number: 351 Research and Quality, 10 Cochrane reviews and CLINICAL TRIAL Presentation type: Oral 54 articles were identified as relevant Poster number: publications. The quality of the systematic Albert Tuca-Rodriguez, Palliative Care Service, reviews was assessed acceptable, thus, relevant L’Hospialet-BCN, SPAIN, Rosa Roca, Hospital Sta Disclosure of prognostic information – RCTs and metaanalyses contribute to the Caterina, Girona, SPAIN, Carmen Sala, Hospital differences between female and documentary basis of this systematic review. St Llatzer, Terrassa, SPAIN, Jesus Gonzalez- male physicians? From the updated literature search RCTs and Barboteo, Institut Catala d’Oncologia, metaanalyses were included, as well as L’Hospialet-BCN, SPAIN, Xavier Gomez-Batiste, Lotte Rogg, Dept. of Oncology, Oslo, NORWAY, comparative case series where studies of a Institut Catala d’Oncologia, L’Hospialet-BCN, Peter Kjaer Graugaard, Dept. of Behavioural higher evidence level were lacking. All included SPAIN Sciences in Med. University of Oslo, Oslo, studies were systematised into three subgroups NORWAY, Jon Håvard Loge, Dept. of according to the quality of the study design in Aim: Determine the antiemetic efficacy of Behavioural Sciences in Med. University of question and the validity of the Results: a) high, granisetron and dexametasone in no surgical Oslo, Oslo, NORWAY b) moderate, and c) low. Results: This systematic malignant bowel obstruction. Method: review is part of a health technology assessment Multicentre prospective phase II clinical trial. Background and Aims: The manner in which (HTA) report performed by an interdisciplinary Inclusion criteria: advanced cancer patients physicians communicate an estimated review group appointed by the Norwegian who presented malignant bowel obstruction, prognosis may be of importance for the Health Services Research Centre planned to be with a clinical and radiological diagnosis and patient’s future life, as well as the finished in December 2004. The results of no indication of surgical treatment. Granisetron physician–patient relationship. The aim of this current available best evidence in relation to efficacy was assessed by means determination study was to explore Norwegian physicians’ pain therapy for cancer patients in the palliative of every day nausea severity (VAS 0–10), attitudes towards the disclosure of prognostic phase will be presented. continuous and colic pain (VAS 0–10), vomits information. Material and methods: Seventy number, and the need of antiemetic drug percent of a representative sample of 1605 rescues, before and after starting granisetron 3 Norwegian physicians that received a postal Abstract number: 353 mg/24h and dexametasone 4 mg/24h. The questionnaire responded to a set of questions Presentation type: Oral global efficacy was assessed after 3 days of related to prognostication and communication Poster number: treatment. The patients with a good control of of prognostic information. Results: Physicians nauseas continued the treatment until complete find it more difficult to formulate a prognosis Opioid Rotation in Cancer Pain: A a maximum of 7 days. We exclude patients than a diagnosis, and more than 50% think Prospective Longitudinal Study previously treated with antagonist of 5HT3 or they have had too little practice in on nasogastric tubes for aspiration. The protocol prognostication. More than 60% stated that Mellar Davis, Hematology/Oncology, was approved by Ethic Committee of all centres. most of their patients didn’t know their Cleveland, U. STATES, Declan Walsh, MSc, Preliminary results: The final estimated prognosis. Differences between the genders FRCP, The Cleveland Clinic Foundation, recruitment will be 30 patients. Until now, 23 were found. Female doctors found Cleveland, U. STATES, Bassam Estfan, The patients have been included. The majority of prognostication more difficult than male Cleveland Clinic Foundation, Cleveland, U. them have been previously treated with doctors, and felt they lacked training in STATES, Susan B. LeGrand, MD, FACP, The standard antiemetic drugs. The initial results are formulation and communication of prognoses Cleveland Clinic Foundation, Cleveland, U. significant improvement of nausea, number of to a greater extent than their male colleges. STATES, Philip Shaheen, MD, The Cleveland vomits and control pain in more than 60% of Conclusions: Norwegian physicians generally Clinic Foundation, Cleveland, U. STATES patients. The majority of patients who had a regard prognostication to be a difficult task. A good control at third day of treatment, keeping greater uncertainty among female doctors Background: Cancer pain can be adequately this response until seventh day. Conclusion: towards communication of prognostic controlled using opioids around-the-clock The antagonist of 5HT3 receptors granisetron information might have implications for how along and rescue dosing. Some develop major with dexametasone bring a good antiemetic they communicate with their patients. The side-effects or do not respond to the initial control in non surgical malignant obstruction physicians’ attitudes towards communication of opioid and require opioid rotation. Reports even while the standard palliative treatment prognostic information may impact on their suggest 24–42% of patients require opioid failed. actual communication with patients and on rotation. We prospectively evaluated the their clinical management of their patients. The number, reason and sequence of opioid findings in this study may have implications for rotation from referral until death. Method: 238 the education of future medical students and consecutive patients were followed by the for establishing communication skills training palliative service in a two month period, 195 for specialists. (85%) had cancer. Initial opioid, the reason for rotation, the number and sequence of opioid rotations and route of administration were

76 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 355 pain were eligible for inclusion. Data was continued importance of teaching cancer pain Presentation type: Oral collected including cancer diagnosis, pain control and identifies where educational Poster number: description and previous management. New activities should be focused. drugs commenced, non drug measures tried Audit of the management of and outcomes including side effects were breakthrough cancer pain in a recorded over 7 days. Results: 89 patients were Abstract number: 358 hospital setting observed. Hot burning (23.4%) and electric Presentation type: Oral shock (19.6%) were the commonest descriptors Poster number: Claire Littlewood, Palliative Care Medicine, of pain. Lower limbs were the commonest site Liverpool, GREAT BRITAIN, Rebecca Conlon, of pain (30.3%). The median number of THE ROLE OF THE SECOND STEP OF THE Liverpool University Medical School, Liverpool, previous drugs was 2 (range 0–5). 37.1% had WHO ANALGESIC LADDER IN THE GREAT BRITAIN, Suchira Sarkar, Liverpool tried non drug measures including heat (12.4%) TREATMENT OF CANCER PAIN University Medical School, Liverpool, GREAT and TENS (11.2%). The most frequently BRITAIN, Jenny Wiseman, Willowbrook prescribed new drugs were gabapentin (56.2%), Wojciech Leppert, Chair and Department of Hospice, St Helens, GREAT BRITAIN clonazepam (22.5%) and (20.2%). Palliative Medicine, Poznan, POLAND, Drowsiness was the most frequently reported Slawomir Pawel Wozniak, Palliative Care Objectives 1. To audit prescription of opioids for side effect in all patients (19.1%). Anaesthetic Department, Down Silesian Oncology Centre, breakthrough pain relief. 2. To assess training intervention occurred in 5.6% patients. 38.2% Wroclaw, POLAND, Jacek Luczak, Chair and needs of Junior doctors toward opioid use. patients had a complete response to treatment Department of Palliative Medicine, Poznan Method 1. A retrospective audit using medical during the 7 day follow up period. Conclusions: University of Medical Sciences, Poznan, records & drug cardexes of 100 cancer Neuropathic pain can be controlled in cancer POLAND inpatients at Whiston Hospital, U.K. in 2003. patients by a combination of non drug, drug The following criteria were collated from and local nerve block measures. The choice of Aim of the study: To assess the usefulness of the internationally approved guidelines & used as drug should be evidence based. As a result of second step analgesic ladder in the treatment of standards: – 100% patients on long acting this study our cancer network standards and cancer pain. Material and methods: opioids should be prescribed opioids PRN. – guidelines have been revised. Retrospective analysis of the use of analgesics of The PRN dose of opioid should be 1/6th of the the second step of analgesic ladder during last total daily dose of long acting opioid. 2. A year from clinical notes. We analysed data of questionnaire of PRHOs at the same hospital. Abstract number: 357 1411 patients treated by Chair and Department Results 1. Audit 59 of the 100 patients were Presentation type: Oral of Palliative Medicine in Poznan (650 patients) female & the age range 39 to 91. 45 patients Poster number: and Palliative Care Department in Wroclaw, 9 APRIL (45%) were prescribed long acting opioids. Of Poland (761 patients). Results In the analysed those 45 cases, 20 (45%) were prescribed Errors in Opioid Prescribing: group of patients 1010 (72%) were treated by opioids PRN. Of those 20 cases 12 (60%) were A Prospective Survey weak opioids. The rest of the patients who had referred to a palliative care team. Of the 25 were treated by strong opioids (usually patients on long acting opioids, without PRN Mellar Davis, Hematology/Oncology, morphine) or non-opioid analgesics. Among opioids, 3 (12%) were referred to a palliative Cleveland, U. STATES, Bassam Estfan, MD, The weak opioids tramadol in different preparations care team. Of the 20 cases on both long acting Cleveland Clinic Foundation, Cleveland, U. was the most commonly used analgesic – orally SATURDAY opioids & PRN opioids, 8 (40%) were given the STATES, Declan Walsh, MSc, FRCP, The in 721 (51.1 %): in immediate release drops and appropriate dose for breakthrough pain. 2. Cleveland Clinic Foundation, Cleveland, U. capsules in 525 (37.2%), in controlled release Questionnaire 20 questionnaires were STATES, Philip Shaheen, MD, The Cleveland tablets in 75 (5.3 %) subcutaneously in 106 completed. All the respondents had received Clinic Foundation, Cleveland, U. STATES, Ruth (7.5%), and rectally in 15 (1%) of patients. The training in prescribing opioids, mainly during a L. Lagman, MD, MPH, The Cleveland Clinic other analgesics of the second step analgesic palliative care placement as Undergraduates. 7 Foundation, Cleveland, U. STATES ladder were oral codeine (in tablets or water out of 20 said this training was inadequate. All solution) used in 153 (11%) patients and agreed additional training during junior doctor Background Cancer patients experience both administered in 15 (1%) induction programmes would be beneficial. 10 chronic and intermittent pain. Analgesic patients. The treatment with weak opioids (50%) calculated the wrong opioid dose for PRN prescribing must consider pain severity, quality lasted on average 35 days and after that period it use. Conclusion Knowledge of appropriate and temporal pattern to be successful. was necessary to substitute weak with strong prescribing among junior doctors is limited. Prescribing errors can occur with dosing opioids because of inadequate analgesia in 515 The standards for prescription of PRN opioids strategy, opioid conversion, opioid rotation, and (51%) of patients treated with weak opioids. were not met. Where the palliative care team adjuvant analgesic use. Such errors result in Good analgesia (VAS < 4) was achieved in 677 was involved, the standards were met. This poorly controlled pain and opioid side effects. (67%) of patients; partial effect (VAS 4–5) in 121 demonstrates a need for multiprofessional This prospective study evaluated opioid (12%), unsatisfactory pain relief (VAS > 5) was education amongst hospital medical, nursing & prescribing at initial consultation by a palliative noted in 111 (11%) of patients treated with pharmacy staff. medicine program. Method 14 principles were weak opioids. No serious side effects were derived from published resources (Agency for noted. Conclusions: 1. The use of weak opioids Health Care Policy and Research, European allowed achieving satisfactory pain relief in Abstract number: 356 Association of Palliative Care, World Health majority of treated patients without serious side Presentation type: Oral Organization, American Pain Society). effects. 2. Half of treated patients demanded Poster number: Deviations were categorized into 1) errors of change for strong opioids after mean time of 35 dosing strategy (10), 2) opioid conversion or days of the treatment. 3. The second step of Neuropathic Pain in Cancer: A Prospective rotation (2), 3) dose titration (1) 4) use of analgesic ladder seems to be important in the Study of Current Management and adjuvant analgesics (1). Results In a 2-month treatment of cancer pain of moderate and Development of Clinical Guidelines in a period 195 of 238 (85%) consecutive patients sometimes severe intensity. Cancer Network evaluated had cancer. 132 of 195 (67%) had pain 95 (76%) had at least one error. In total 166 Helen Emms Wirral, GREAT BRITAIN, Claire errors were identified; 142 strategy errors, 6 due Abstract number: 359 Douglas, Marie Curie Centre, Liverpool, GREAT to adjuvants and 5 due to inappropriate Presentation type: Oral BRITAIN, Mathew Makin, Nightingale House, conversion or rotation. 13 had other errors. Poster number: Wrexham, GREAT BRITAIN, John Ellershaw, 57% had 1 error, 24% 2 and 19% 3 or more. Marie Curie Centre, Liverpool, GREAT BRITAIN Common errors were 1) failure to use Respiratory Tract Secretions in the Dying continuous oral or parenteral opioids (29 Patient: A comparison between Background: One third of cancer patients are patients), 2) undertreatment of opioid side- Glycopyrronium and Hyoscine affected by neuropathic pain. 50% of these effects (24 patients) 3) simultaneous use of Hydrobromide patients will achieve pain control using the multiple opioids (16 patients). 163 WHO analgesic ladder. Regional guidelines for recommendations were made; low dose Heino Hugel, Palliative Medicine, Liverpool L25 management of neuropathic pain exist but continuous dose opioid (23 patients), opioid 8QA, GREAT BRITAIN, J Ellershaw, Marie Curie there is variation in treatment between local rotation (22 patients), rescue dose titration for Hospice, Liverpool, GREAT BRITAIN, RM Kass, palliative care settings. Objectives: To assess incident pain (16 patients) and treatment of Marie Curie Hospice, Liverpool, GREAT current management of neuropathic pain in opioid side effects (14 patients) were most BRITAIN, M Gambles, Marie Curie Hospice, cancer across a local cancer network and to common. Discussion Most cancer patients with Liverpool, GREAT BRITAIN, S Foster, Marie further develop evidence based guidelines. pain referred to a palliative medicine program Curie Hospice, Liverpool, GREAT BRITAIN Methods: A prospective multi-centre study was have one or more opioid dosing errors. Most performed over 4 months with a involve failure to prescribe according to pain Introduction and aim of the study: The comprehensive literature review. All patients pattern or severity and failure to treat opioid evidence for the management of respiratory with new onset or uncontrolled neuropathic side-effects. This study demonstrates the tract secretions (RTS) in dying patients with

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 77 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

antimuscarinic drugs remains inconclusive and scores and visual analogue scales for sleep, pain buprenorphine on human skin using painful randomized, double blind studies in this area and appetite. Results: 33 patients were recruited transcutaneous electrical stimulation. This are ethically complex. This study aims to and 26 (78%) completed the study. Of these, model allows the assessment of time courses of compare, in a matched sample as a means of half judged the Methylphenidate to have been analgesic and antihyperalgesic effects for control, the effectiveness of glycopyrronium effective and half had either no preference or different analgesics with high temporal and hyoscine hydrobromide in treating RTS in preferred placebo. Full statistical analysis is in resolution in a minimally invasive approach 1. dying patients using the Liverpool Care of the progress and will be presented. Methods: Fourteen volunteers were enrolled in Dying Pathway (LCP). Methods and Results: In a this randomized, double blind, placebo 30-bedded palliative care unit glycopyrronium controlled cross-over study. Transcutaneous was introduced as the drug of choice for RTS in Abstract number: 361 electrical stimulation at a high current density dying patients in August 2002. Dying patients Presentation type: Oral induced ongoing pain and stable areas of on the unit are managed using the LCP and Poster number: pinprick hyperalgesia and touch-evoked have RTS recorded every four hours as present allodynia. Pain intensity and the areas of or absent. RTS are treated according to an Full reversal of buprenorphine-induced secondary hyperalgesia were repetitively agreed standard protocol. Response to the drug respiratory depression by continuous assessed 30 min. before and up to 150 min. after is categorised into: • Immediate (within four infusion of administration of 0.15 mg buprenorphine i.v., hours) • Late (more than four hours, but before 0.2 mg buprenorphine s.l. or placebo. The death) • Transient (symptom free episodes after Albert Dahan, Department of Anesthesiology, sessions were separated by two week wash-out treatment of RTS, but RTS at death) • Non- Leiden, NETHERLANDS periods. Results: All subjects completed the response (no symptom free episode after onset study, side-effects like nausea and vomiting of RTS). Over a prospective ten-month period Long acting opioids, such as buprenorphine, were observed in 4 subjects. Buprenorphine i.v. there were 77 patients who died with RTS and play a pivotal role in the treatment of cancer led to a 25 min. faster onset of analgesia as were treated with glycopyrronium for more pain. Apart from the intended effect (pain compared to Buprenorphine s.l.. In both than four hours before death. 36 of these relief) the side effect profile of these drugs preparations antihyperalgesic effects were found patients were matched for age (within seven needs to be taken into account. Among the side to be longer lasting as compared to the analgesic years), diagnosis and gender with 36 patients effects, respiratory depression is potentially life effects (Half time of effect after i.v. from a cohort of 59 patients who had died with threatening. In case of serious respiratory administration: 321 vs. 169 min.). Maximum RTS at the unit in 1999 and had been treated depression the non-specific opioid receptor reduction of the areas of secondary hyperalgesia with hyoscine hydrobromide. Overall 100% of antagonist naloxone is considered the drug of to pinprick did not differ between the patients had some response to glycopyrronium choice to reverse respiratory depression. preparations. Conclusions: Administration of compared to 78% to hyoscine hydrobromide. At Buprenorphine is no exception to the rule, buprenorphine led to a profound death 72% in the glycopyrronium group and although its impact on respiratory function is antihyperalgesia which exceeds the analgesic 58% in the hyoscine group had RTS controlled. significantly less pronounced than with other effect. Further studies are necessary to Grouping together immediate, late and strong opioids. Most important buprenorphine investigate whether the different time courses transient response and comparing it to no shows a ceiling regarding its effect on of analgesic and antihyperalgesic effects can be response, patients were significantly more likely respiratory function. Few studies that addressed attributed to distinct mechanisms of the opioid to respond to glycopyrronium than to hyoscine the issue of reversal of buprenorphine-induced or to different sensitivities of the model. hydrobromide (p<0.01). Conclusion: This study respiratory depression by short-term naloxone suggests that glycopyrronium may be more infusions suggest resistance to antagonism. We Reference effective in controlling RTS in dying patients examined the influence of the combination of 1. Koppert et al., Anesthesiology 2002; 96:29–34 than hyoscine hydrobromide. a bolus and continuous naloxone infusion on respiratory depression induced by buprenorphine. Twenty-one volunteers Abstract number: 363 Abstract number: 360 participated in the study. Respiration was Presentation type: Oral Presentation type: Oral measured at a fixed end-tidal PCO2 of 7 kPa. Poster number: Poster number: Buprenorphine dose was 0.2 mg/70 kg, – given as bolus, – over 58.5 min. Thirty min after the Quantification of analgesic and A randomised, double-blind, placebo- bolus buprenorphine infusion, subjects antihyperalgesic effects of buprenorphine controlled, crossover trial examining received either placebo (n = 7), 0.5 mg (n = 1), 1 and fentanyl in healthy volunteers methylphenidate in the treatment of mg (n = 2), 2 mg (n = 5), 3 mg (n = 2), 4 mg (n = fatigue among a population with 2) or 5 mg (n = 2) i.v. naloxone. Half of the Andreas Troester, Dept. of Anaesthesiology, advanced malignancy naloxone was given over 2-min, the remainder Erlangen, GERMANY, Boris Singler, University over 28 min. The data was analyzed using the of Erlangen, Pain Clinic, Erlangen, GERMANY, Stephen Higgins, Medical Department, D6, Hill equation. The buprenorphine/placebo Reinhard Sittl, University of Erlangen, Pain IRELAND, Marie Twomey, Our Lady’s Hospice, combination produced 40% reduction of Clinic, Erlangen, GERMANY, Jürgen Schüttler, Dublin, IRELAND, Liam O’Siorain, Our Lady’s minute ventilation. A dose-dependent increase University of Erlangen, Pain Clinic, Erlangen, Hospice, Dublin, IRELAND, Maeve O’Reilly, in reversal of respiratory depression by GERMANY, Wolfgang Koppert, University of Our Lady’s Hospice, Dublin, IRELAND, Patricia naloxone was observed: total naloxone dose Erlangen, Pain Clinic, Erlangen, GERMANY Fitzpatrick, University College Dublin, Dublin, causing 50% reversal of respiratory depression IRELAND 1.20 ± 0.32 mg/70 kg; 95% reversal was Objective: We assessed the combination observed at 5.36 ± 2.7 mg/70 kg naloxone. In compatibility of the partial µ-agonist Background: Fatigue is both common and Conclusion, reversal of buprenorphine-induced buprenorphine with the full µ-agonist fentanyl burdensome in patients with advanced respiratory depression is possible with an by quantifying their analgesic and malignancy and pharmacological treatment infusion regimen aimed at a constant plasma antihyperanalgesic effects when given either options are very limited. Methylphenidate is a concentration of naloxone. alone or in combination. Methods: 15 healthy psychostimulant with rapid therapeutic effect volunteers were included in this randomised, and relatively few side effects. It has been used double blind, placebo controlled study. for the treatment of a range of symptoms in the Abstract number: 362 Transcutaneous electrical stimulation at high palliative population – depression, pain, drug- Presentation type: Oral current density (38.4; 12.8 mA) induced induced sedation and fatigue. Its use in the Poster number: spontaneous acute pain (NRS = 6 of 10) and treatment of cancer fatigue is not new and has stable areas of hyperalgesia for painful been supported by some small open-labelled Different time courses of buprenorphine- mechanical stimuli. Pain intensity as well as the studies. There have, however, been no induced analgesia and antihyperalgesia in extent of the areas of hyperalgesia were assessed published controlled studies examining its an experimental human pain model before, during and after an i.v. infusion of 10 efficacy. Objectives: We examined the efficacy minutes’ duration of fentanyl (1.5 µg/kg), of methylphenidate in the treatment of fatigue Wolfgang Koppert, Dept. of Anaesthesiology, buprenorphine (1.5 µg/kg), their combination in patients with advanced malignancy by Erlangen, GERMANY, Nicole Körber, University (0.75 µg/kg each) or placebo (saline 0.9%). comparing it against placebo. Methods: We of Erlangen, Pain Clinic, Erlangen, GERMANY, Assessments were repeated every two weeks. used a fourteen-day, double-blind, randomised, Andreas Wehrfritz, University of Erlangen, Pain Results: Fifteen minutes after fentanyl placebo-controlled, crossover design with a Clinic, Erlangen, GERMANY, Harald Ihmsen, application and 45 minutes after fixed titration schedule. Inclusion criteria University of Erlangen, Pain Clinic, Erlangen, buprenorphine application maximum analgesic included fatigue as one of the patient’s two GERMANY, Reinhard Sittl, University of effects were observed (pain reduction to 47; most prominent symptoms and life-expectancy Erlangen, Pain Clinic, Erlangen, GERMANY 23% and 59; 23%, respectively). The maximum greater than one month. Fatigue was assessed effect of the combination (pain reduction to 58; with two multidimensional fatigue scales and a Objective: To compare the time courses of 31%) occurred after 30 minutes and therefore visual analogue scale. Also measured were analgesic and antihyperalgesic effects of fell between the maxima of single substances. haematological and biochemical indices, HADS intravenous (i.v.) and sublingual (s.l.) During the whole observation period a supra-

78 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

additive analgesic and an additive patients with renal insufficiency without dose undoubtedly a major part of providing optimal antihyperalgesic effect of both substances could adaptation and without increased risk of side palliative care. Despite this there is little be shown (analgesic effect: AUC fentanyl vs. effects. information regarding the impact of hospital buprenorphine vs. combination: 35.4 vs. 40.0 based palliative care teams. The aim of this vs. 44.0; antihyperalgesic effect: AUC fentanyl study was to assess the effect of the hospital vs. buprenorphine vs. combination: 18 vs. 25 Abstract number: 365 palliative care team on cancer patient’s insight vs. 23). Conclusion: The combination of Presentation type: Oral to their disease. Methodology An evaluation buprenorphine with the full µ-agonist fentanyl Poster number: study comprising a non-equivalent control did not lead to any antagonistic effect in our group design, using a quota sample, model. On the contrary, both drugs seemed to Lidocaine 5% patch in the treatment of investigated 100 cancer patients admitted to reinforce each other in their analgesic and neuropathic pain of diverse origin. hospital for symptom control. 50 patients antihyperalgesic effects. received hospital palliative care team Eriphili Argyra, Anaesthesiology -Palliative Care intervention compared with 50 patients Clinic, Athens, GREECE, Ioanna Siafaka, Athens receiving traditional care. Outcome was Abstract number: 364 University, Athens, GREECE, Eleni Moka, assessed using the PACA assessment tool on 3 Presentation type: Oral Aretaieio Hospital, Athens, GREECE, Athina occasions (within 24 hours of Poster number: Vadalouca, Athens University, Athens, GREECE admission/diagnosis or referral to the team, day 4 and day 7) measuring the patients self Pharmacokinetics of transdermal Background: Neuropathic pain syndromes are reported understanding of their illness. buprenorphine (Transtec®) in patients difficult to treat. Commonly used combinations Additionally a qualitative approach including 31 with renal insufficiency of anticonvulsants, antidepressants and opioids semi structured interviews with doctors and are often ineffective, whereas side effects nurses to explore their perception of the Johannes Philipz, University Hospital Erlangen, especially in older or very sick patients preclude palliative care team impact on cancer patients Erlangen, GERMANY, J Filitz, University their use. Results of invasive therapy are still insight in to their disease was undertaken. Hospital Erlangen, Erlangen, GERMANY, controversial. An old local anesthetic, lidocaine Results and Discussion The results indicated Reinhard Sittl, University of Erlangen, Pain has been produced in the form of patch, that cancer patients admitted to hospital for Clinic, Erlangen, GERMANY, Norbert recommended for the treatment of post herpetic symptom control demonstrated an Griessinger, University of Erlangen, Pain Clinic, neuralgia. Recently it has been used for the improvement in their insight to their diagnosis Erlangen, GERMANY, Rudolf Likar, General treatment of other painful neuropathic (p<0.01). Those patients who had the additional Hospital Klagenfurt, Klagenfurt, AUSTRIA, syndromes as well. Aim of the study: An input of the palliative care team had a greater Wolfgang Koppert, University Hospital observational open study to evaluate the long- improvement in their insight scores (between 9 APRIL Erlangen, Erlangen, GERMANY term efficacy and adverse effects of Lidocaine initial and final assessments) from 3.98 to 2.02 5% patch in resistant to therapy neuropathic (mean score), compared to the standard care The reduced physical state of terminally ill pain of diverse origin. Method: Lidocaine 5% group that displayed an improvement from 4.86 patients is often associated with diminished patch (Lidoderm®), was used as add on therapy to 4.26. This input was reported by the doctors organ functions resulting in severe renal or in 36 patients suffering from chronic pain and nurses as being invaluable for the patients. hepatic insufficiency. However, with most of syndromes: Postherpetic neuralgia 17, The value of using an evaluation research the currently used opioid analgesics there is a Posthoracotomy syndrome 6, Post mastectomy approach combining methodologies will be SATURDAY risk of accumulation of either parent pain 4, Diabetic neuropathy 2, Complex discussed and potential explanations for the compound or metabolites resulting in drug- regional pain syndrome 5, peripheral ischemia results will be explored. related tolerability problems in a number of due to autoimmune disease 2. Two patches were patients. In contrast the pharmacokinetics of used every 24 hours. Length of therapy, Pain buprenorphine show only very slight changes intensity before and after treatment, Pain Abstract number: 367 in patients with renal failure, making it intensity difference, global therapy assessment, Presentation type: Oral especially suitable for pain treatment in these adverse effects and reasons for treatment Poster number: patients. stopping were recorded. Results: Length of To investigate the impact of haemodialysis on treatment was 2 monthts to 4 years (mean 18 Action research in palliative care: An the plasma concentrations of buprenorphine months). Pain relief 10–50% (mean 33,4%), overview of the literature (bup) and its metabolite patient assessment: fairly good result 30%, good (norbup) ten patients were asked to provide 30%, very good 20%, no result 20%. Local Kashifa Mahmood, Centre for Primary Health blood samples immediately before and after erythyma was observed in 5 patients, (13.8%) Care Studies, Coventry, GREAT BRITAIN, Dr haemodialysis. The mean age and weight of the Treatment was abandoned by 1 patient due to Daniel Munday, Warwick University Medical patients were 63 years and 65 +/– 9 kg, local erythyma and by 3 due to difficulty in School, Coventry, GREAT BRITAIN respectively. The patients had to be sufficiently obtaining the patch. Conclusion: Lidocaine 5% treated with transdermal buprenorphine for patch was fairly efficient as add on therapy, in Aims and objectives: Action research promotes several weeks to ensure steady state conditions. the studied group of patients suffering of an educative and empowering approach to Bup and norbup plasma concentrations were neuropathic pain of diverse origin. The patch modifying clinical practice and facilitating analysed as described by Ceccatto et al. was safe and well tolerated even as long term organisational change. Service delivery and Results: the mean bup plasma concentrations therapy (up to 4 years), since serious adverse research are closely linked with both activities were 0.35 ng/ml before and 0.38 ng/ml after effects attributable to treatment were not being undertaken by practitioners using a cycle haemodialysis. This result correlates well with observed. 1 Rowbotham MC, et al Pain 1996; of reflection, action and evaluation. Although it the average daily dose of 50.8 µg/h, confirming 65:39–44 2 Meier T, et al Pain 2003; is increasingly utilised in health services that buprenorphine plasma levels are not 106:151–158. research, no reviews of action research in altered in patients with renal insufficiency. A palliative care are available. A review of significant correlation between plasma levels published literature was therefore undertaken to and administered doses could also be observed Abstract number: 366 investigate the use of action research in in these patients with renal insufficiency. The Presentation type: Oral palliative care. Methods: A search of databases slightly increased plasma concentrations in the Poster number: in MEDLINE, EMBASE, CINHAL and the Web of second blood samples could be attributed to the Science was performed from their inception to decreased plasma volume after haemodialysis, When you cannot use an RCT – the value June 2004. MESH and free text searches were but they also indicate that bup is not removed of using evaluation research to assess the used to identify articles using palliative, cancer by dialysis which is consistent with the improvement of cancer patient’s insight and action research as key terms. Palliative observation that there had been no differences into their disease following the impact of Medicine (1999–2004) and the Journal of in pain relief before and after haemodialysis. the hospital palliative care team Advanced Nursing (1993–2004) were scanned Regarding norbup it is notable that 7 out of in detail. Emerging Findings: Eleven action 10 patients did not have any detectable Barbara Jack, Faculty of Health, Liverpool, research studies (published 1996–2003) were norbuprenorphine plasma concentrations, i.e. GREAT BRITAIN, Valerie Hillier, University of found, addressing palliative care (8) or focusing plasma levels were below 0.05 ng/ml before as Manchester, Manchester, GREAT BRITAIN, Anne on cancer services (3). Projects were conducted well as after haemodialysis. The other three Williams, University of Wales, Swansea, in the UK (5), Australia (4), Finland (1) and the patients had norbup plasma levels still lower Swansea, GREAT BRITAIN, Jackie Oldham, USA (1). Studies were based in the community than the concentrations of the mother University of Manchester, Manchester, GREAT (7) and in a hospital setting (4). Projects focused compound. BRITAIN on changing practice (4), strengthening service Conclusion: this investigation shows no organisation (1), designing staff educational clinically significant increase of either bup or Background It is reported that cancer patients programmes (4) or raising health awareness norbup plasma levels in patients with renal want as much information as possible about amongst patients (2). Qualitative and insufficiency. Consequently transdermal their diagnosis and prognosis. This input quantitative methods were employed including buprenorphine can easily be administered to regarding patient’s insight into their disease is questionnaires, focus groups, interviews,

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 79 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

telephone surveys and literature reviews. attention has been directed toward preservation following intervention by Macmillan specialist Conclusion: New models of care may arise and/or recovery of their physical function. palliative care nurses. Journal of Advanced through action research which attempts to Purpose: To examine the effects in objective Nursing. 41(6) 561–74 Ewing G. et al. (2004) bridge the divide between scientific theory and physical function tested by means of a walk test Recruiting patients into a primary care based clinical practice. It may promote service and ‘sit to stand’ test, subjective emotional and study of palliative care: why is it so difficult? delivery, enhance patient care and shape physical functioning, fatigue and sleep in Palliative Medicine. 18 452–459. professional practice. The relatively sparse incurable cancer disease patients with short literature suggests its potential to generate novel expected lifetime undergoing a physical exercise insights in palliative care has yet to be realised. programme. Patient population: Patients from Abstract number: 371 an oncological and a palliative care outpatient Presentation type: Oral clinic. Exercise intervention: The patients Poster number: Abstract number: 368 participated in an exercise programme twice a Presentation type: Oral week for 50 minutes each time over a six week Do words matter? A systematic review of Poster number: period. Methods: Assessments were carried out race, ethnicity and culture as variables in prior to the intervention and at completion of palliative care research Stress within Palliative Medicine the exercise period. ‘Objective’ physical function were measured by a 6 minutes walk Jonathan Koffman, Department of Palliative Pat Ahlquist, Leigh on Sea, GREAT BRITAIN, test and ‘time repeated sit to stand’. Fatigue was Care & Policy, London, GREAT BRITAIN, Irene Anita Houghton, Thames Postgraduate Medical measured by Fatigue Questionnaire (FQ), Higginson, King’s College London, London, and Dental Education, London, GREAT physical- and emotional function, fatigue and GREAT BRITAIN BRITAIN, David Feuer, Barts and the London sleep by the European Organisation of Research NHS Trust, London, GREAT BRITAIN and Treatment in Cancer Core Quality of Life Background: Researchers in palliative care are Questionnaire (EORTC QLQ-C30). Results: In increasingly exploring the influence of race, There is renewed concern amongst the medical FQ physical fatigue was significantly decrease ethnicity and culture in order to maximize profession about their levels of stress and drop- from 12.6 to 10.7 (p=.02). Of the EORTC patient and family care at the end of life. out rates. Physician stress is also known to lead emotional functioning was increased from 69 However, these broad taxonomies warrant to deterioration in both the quality and to 78 (p=.002), physical functioning from 65 to investigation in order to understand their quantity of patient care. Previous research 67 (p=0.60), fatigue symptom scale decreased application and appropriateness. Objectives: To suggests links between personality and stress. from 51 to 43 (p=.07) and insomnia from 44 to examine the use of ethnic, racial and cultural We surveyed a group of Palliative Medicine 36 (p=.20). Walk length increased significantly descriptors in palliative care-related articles Consultants and trainees to assess their current from 481 to 510 meters (p=.007) and the time published during 2003. Specifically, (i) what levels of burnout and psychiatric morbidity as a repeated sit to stand was reduced from 5.1 to 4 research questions are being addressed? (ii) measure of job-related stress, and to determine seconds. Conclusions/implications: Structured what classifications are being used? (iiii) have if there were any links with personality or physical exercise is a feasible method to reduce guidelines (Senior & Bhopal 1994, McKenzie & demographic factors. All specialist registrars and physical fatigue and preserve objective physical Crowcroft 1996) informed researchers on how consultants in Palliative Medicine in North and function in incurable cancer disease patients. classifications should be used? Method: South Thames were asked to complete Future randomised trials are needed to confirm Systematic literature search of Medline using a confidential questionnaires including the results. pre-determined search strategy. Analysis: demographic details, time off work for stress, Articles were assessed using quality criteria. the MBTI, the GHQ12 and the Maslach Burnout Evidence of definitions and appropriateness of Inventory. 49 (86%) Registrars and 60 (76%) Abstract number: 370 terminology were extracted and synthesized Consultants responded. They showed distinct Presentation type: Oral into tables for each study leading to an overall personality profiles and significant stress levels. Poster number: summary table providing a concise outline of Consultants had much higher levels of study quality. Results: A total of 1,737 palliative psychiatric morbidity and burnout compared to Seeking new methodology for palliative care-related papers were retrieved during 2003. their Registrars (41% vs. 28%). All the Registrars care research: An example of using a Of these, 65 (3.7%) satisfied our inclusion severely affected by stress and with high participatory approach for recruitment criteria. A total of 13 (20%) articles referred to Emotional Exhaustion scores worked full time race or race and ethnicity, 11 (17%) to ethnicity, in a hospice. For Consultants, high Emotional Jane Hopkinson, Macmillan Research Unit, ethnic minorities or groups, and 41 (63%) to Exhaustion was associated with combining Southampton, GREAT BRITAIN variations of culture and cultural including more than one place of work. Consultant’s origins, diversity and competence. Emotional Exhaustion scores also increased Objective: Palliative care researchers face many Classifications were rarely defined and were with age. 10/17 (59%) of consultants aged ethical and practical challenges. In particular, used interchangeably. No studies referred to 46–55yrs were burnt out in at least one category recruitment has proven difficult (Corner et al., acknowledged guidelines. Conclusion: We or scored positive for psychiatric morbidity on 2003; Ewing et al., 2004). New methodologies make recommendations about the use of the GHQ 12. Analysis of qualitative results on and methods need to be developed if barriers classifications to understand difference for stressors shows that time constraints and are to be overcome. This paper provides an future palliative care research, one of which is management difficulties were most commonly example of a collaborative approach to research that ethnicity and race should be recognised mentioned by consultants, whereas registrars with people approaching the end of life. It is and treated as distinct concepts. mentioned difficulties with patients and proposed that the success of this research can relatives and feeling unsupported. Throughout be attributed to adoption of a context specific the sample those with ISTJ and INFJ personality participatory approach. Method: A participatory Abstract number: 372 type preferences appeared more susceptible to approach was used for recruitment into an in- Presentation type: Oral stress and burnout and may require extra depth multi-methods study of the symptoms of Poster number: support when working within the speciality. weight loss and eating difficulties experienced by people with advanced cancer. The total The changing personality of Palliative caseloads of two community palliative care Medicine Physicians Abstract number: 369 teams working in the south of England in 2003 Presentation type: Oral were approached and 199 patients (response Pat Ahlquist London, GREAT BRITAIN, Anita Poster number: rate 85%) agreed to take part in the study. Houghton, Thames Postgraduate Medical and Findings: The research process facilitated Dental Education, London, GREAT BRITAIN, Physical exercise intervention in palliative practice development for the clinicians David Feuer, Barts and the London NHS Trust, cancer patients; a phase II study. Effects of involved, but also benefited patients and their London, GREAT BRITAIN the exercise programme families. This paper critically examines these benefits but also issues that emerged across the Palliative Medicine arose from the work of a few Line Merethe Oldervoll, Department of Cancer course of recruitment, thus highlighting points pioneers within a wide variety of specialities. Research and Molecular Medici, Trondheim, of interest for palliative care researchers. There is no description of the types of NORWAY, Jon Håvard Loge, Department of Conclusions: Successful recruitment into this personalities found in Palliative Medicine Behavioural Sciences in Medicine, Oslo, study challenges the widely held belief that, for although psychometric testing of personality NORWAY, Unni Vidvei, Hospice Lovisenberg, practical and ethical reasons, it is inappropriate can assist medical career planning and reduce Oslo, NORWAY, Paltiel Hanne, Palliative Unit, St to study people who are approaching the end of drop-out rates. Understanding personality can Olavs Hospital, Trondheim, NORWAY, Kaasa life. It demonstrates that a participatory also enhance team building, improve Stein, Department of Cancer Research and approach can be both feasible and mutually negotiating and teaching skills and help in Molecular Medicine, Trondheim, NORWAY beneficial for clinicians, researchers and stress management. We therefore studied the patients. personality of current and former palliative Background: Despite growing interest in Corner J. et al. (2003) Exploring nursing medicine physicians. All specialist registrars and palliative cancer patients’ quality of life, little outcomes for patients with advanced cancer consultants in Palliative Medicine in North and

80 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

South Thames were asked to complete Abstract number: 375 considered. The care of a patient with dyspnoea confidential questionnaires, including Presentation type: Invited is challenging for nurses as there are different demographic details and the MBTI, as part of a Poster number: forms of dyspnoea (chronic dyspnoea, acute larger study. The questionnaires were also sent respiratory attack, death rattle). Besides to doctors present at the inaugural meeting of When all is said and done: interpreting appropriate medical and therapeutic measures the APM who had continued in the speciality. the language of caring the following nursing interventions can be 49 (86%) Registrars, 60 (76%) Consultants and helpful for the patient: measures to reduce 15 (40%) founder members responded. This is Phil Larkin, Galway, IRELAND anxiety, different positioning strategies, fresh 36% of all SpRs and over 28% of all U.K. air, mouth care, guidance for power reduced Consultants in Palliative Medicine and is not As the development of palliative care progresses movements (kinaethetics) and massage. significantly different from the national sample within mainstream healthcare, a tension may Dyspnoea can be successfully relieved through in gender or qualifications. The results show exist between the need for technological careful and competent cooperation of all carers. personality profiles that are distinctly different advancement and the need to meet the basic from other specialities and may help in career needs expressed by patients; to be cared for, advice. Comparing the Thames Registrars with comforted and consoled. The role of nurses in Abstract number: 378 the Consultants suggests that the personality this caring role has, by and large, been well Presentation type: Invited profile of the speciality is changing. Combining articulated in the literature, although possibly Poster number: all the results shows a distinct difference in the the nursing contribution to modern group type of those who have been working in conceptions of palliative care still requires Care of the body at the end of life: the speciality 10 years or more, compared with further explication. A double challenge for the carer their junior colleagues. The senior group type is In this presentation, an overview of the INTJ, compared with ESFJ in the others. INTJs construct of palliative caring will be given, with Brigitte Eugene, Soins Palliatifs, Lyon, FRANCE have long-range vision, planning skills, and are a focus on the value of attention to practical good at problem solving at an analytical level. detail. The intuitive nature of caring will be Care for the body at the end of life enables the ESFJs have good people skills, can maintain and discussed in terms of the use of physical senses practitioner to return to the roots of their caring preserve what works and are skilled at building (sight, hearing, touch, smell, and taste) as a way profession and to demonstrate their skills at the consensus. Will the speciality be able to develop of exploring the practical dimension of care and deepest level of practice. One of these and thrive now that we have lost our suggests that such an approach compliments challenges is the ability to be present to the visionaries? rather than contrasts the technology of suffering body and enable the patient to see palliation, when applied in the professional that such changes in their body as the end of context of assessment and evaluation. life approaches do not detract from their 9 APRIL Abstract number: 373 humanity. Presentation type: Invited This may be difficult, not least because of the Poster number: Abstract number: 376 physical assault on the senses of bodily process; Presentation type: Invited odour, sweat, stools, wounds. Gently, the carer Biology and pharmacology of the older Poster number: must move both patient and family through patient – Start low – go slow these changes, support guide and console.

The use of MEOPA (ENTONOX) in the relief This presentation looks at the intrinsic value SATURDAY Ola Dale, Department of Anesthesiology, of pain of caring for the body and its role in the broader Trondheim, Norway practice of care at the end of life. The specific Leila Measson-Bouhafs, Lyon, France needs of care in the terminal phase will also be A person is considered old when above 65 yrs of discussed. age. Social and medical advances have changed This presentation will discuss the use of self- the age composition of advanced industrialized administered analgesia using ENTONOX . The ( short précis from French language version – PJ Larkin) countries. The number of persons above 65 history and development of the gas will be years of age increased from 8 % of the total discussed as will the physiological actions American population in 1950 to about 13 % in indications for use and practical procedures Abstract number: 379 2000 and is expected to reach about 20% in necessary for its safe use. The Nursing care of Presentation type: Invited 2030. A consequence is that the number of the patient, before, during and after the Poster number: patients in need of palliation will increase procedure will be described as well as the substantially during the next decades, as the relevant side-effects, and contra-indications. The EAPC Task Force Development of older patient also has more cancer than This presentation will suggest that MEOPA Palliative Care in Europe younger. Aging is a continuous process that (ENTONOX) is a valuable tool to assist in the starts after puberty. Aging causes reduction in care of palliative patients. Carlos Centeno, Programa de Medicina functions, and reduce the capability to master Paliativa, Pamplona (Navarra), SPAIN the daily activity of living as complex actions such as driving. Old people may present Abstract number: 377 The information relating the develop and symptoms such as pain differently than younger Presentation type: Invited provision of Palliative Care in the whole Europe people, and more often cognitive changes such Poster number: is very few, dispersed and uncompleted. EAPC as confusion are nonspecific symptoms of stress feels the responsibility to cooperate to collect or disease. Aging causes changes in the Holistic care of patients with and spread the information available about the pharmacology of drugs, usually resulting in a breathlessness provision of Palliative Care in Europe, the more pronounced action, for instance for implementation dilemmas that we are finding opioids. Old people often suffer from more Beate Augustyn, Bavarian, München, GERMANY and the success in attending better more serious adverse drug effects than younger, for patients every year. All of this, thinking that it instance for NSAIDs often used for pain in Holistic care of patients with breathlessness could be a good stimuli for all and to help to palliative care. Therefore medication should Breathlessness is a subjective symptom causing advance in this area. The EAPC intends for the “start low” and dose titration should “go slow “. suffering in patients, relatives and carers. first time to carry out a comprehensive overview Moreover, repeated evaluation of the treatment Patients experience breathlessness as distressing of the palliative care situation in each European with respect to desired effects or troublesome and react with anxiety. Dyspnoea reduces the country. Such work will allow us to make some adverse effects is required. Stopping of patients’ ability to communicate, his mobility assessment of the current state of development treatment is often required to evaluate whether and his ability to take part in social life. of palliative care across many countries. With the patient benefits from pharmacotherapy or Relatives feel helpless and powerless. Nurses this goal in mind, in June, 2003 the EAPC Board not. react either with reservation or with increased agreed to the creation of creation of a Task activity. Breathlessness is causing anxiety in all Force on palliative care development in Europe. parties. This anxiety is passed on from patients The work of the Task Force will be of great to relatives and nurses and backwards. Thus importance for activities at the policy level and anxiety is increasing breathlessness. To will make use of important collaborations with interrupt this vicious circle it is not only other institutions and with representatives of important to know the causes of breathlessness national and professional associations. This but to explore the patients’ subjective study will be carried out in a systematic way and experience of breathlessness and mechanisms with a well defined method. In the introductory that help best in this situation. Thus presentation the actual situation of this breathlessness is what the patient says it is and International study will be described. not what we observe or measure. To treat breathlessness different levels – physical, psychosocial and spiritual – have to be

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Abstract number: 380 palliative care services; improving relationship study will be needed. Study design usually refers Presentation type: Invited with policy makers of the Ministry of Health, to the ‘type’ of study and includes a brief Poster number: and the NHS during the working up (consensus outline of what will be done. They can be conferences; control of professional level). categorised according to the answers to four Palliative care development Weak points: lack of precise clarifying of the central questions: (1) will you collect the aims of Professional Guidelines (putting too information or used other sources? (2) what is David Clark, International Observatory on End much in it, textbook function); few contacts the time sequence between study of the input of Life Care, Lancaster, GREAT BRITAIN with professional physician societies and (e.g. the important factors and /or the clinics; lack of need assessment and researches; intervention) and output (the effects), (3) what Global interest in palliative care development lack of harmonizing of different actions of the is the philosophy and nature of data – numbers, has never been greater. Nevertheless, we still NGO-s. Conclusion: Legal background is or describing the nature of things and themes? have only a rudimentary understanding of the essential condition of palliative care (4) are you trying to ‘test’ whether one thing factors that shape and influence policy and development. It is necessary to complete it with causes another (e.g. whether a treatment service innovation in palliative care. Why are a well-defined and coordinated policy activity. improves fatigue). some countries quite well endowed with Using examples from recent palliative care palliative care services, whilst others are not? Is studies we will consider the relationships it a question of economics, wider resources, Abstract number: 383 between study aims and Design. We will then human development index rating, or particular Presentation type: Invited appraise the alternative designs of clinical barriers within the health care system? What is Poster number: studies including experimental and quasi- the role of charismatic leaders and product experimental designs. Finally we will consider champions in promoting palliative care Introduction – Research – design of appropriate study designs to assess complex innovation? How can we set about building and clinical studies interventions, using models such as the Medical then sustaining a palliative care workforce, Research Council Framework for the evaluation forging a field of specialization, and creating Franco De Conno, National Cancer Institute of of complex interventions. the academic and evidence base that will Milan, Italy strengthen the claims of palliative care protagonists? These and related questions will Palliative Medicine (PallMed) is growing rapidly Abstract number: 385 be explored in this teaching session on towards a medical speciality. Good assistance is Presentation type: Invited palliative care development. the first goal, but there are also two other pre- Poster number: eminent aspects: education and research. In PallMed the potential subjects of research are How to set up a protocol in Palliative Care Abstract number: 381 two: the patient and his/her family. But Presentation type: Invited attention! Palliative care patients differ from Declan Walsh, The Cleveland Clinic Poster number: traditional patients. Foundation, Cleveland, Ohio, USA Pain for example that in other fields is Palliative care development considered as physical suffering is “total pain” Development of systematic research is (physical, psychic, social and spiritual). Many dependent on a disciplined approach to Carl Johan Fürst, Stockholms Sjukhem patients prefer not to control pain totally and protocol development. This requires the Foundation, Stockholm, Sweden maintain their cognitive function. commitment of energy, money, staff time and There is an agreement on 4 dimensions of other resources to this process. It is essential Comparing the WHO definitions of 1990 and quality of life (QoL): Physical dimension, that there is a regular research meeting. This 2002 reflects recent development and future psychological well being, social relation and all serves as a forum for the generation of new challenges for palliative care. In most societies the symptoms related to illness and to therapies. ideas, constructive criticism of new ideas and there is an increasing prevalence of patients The role of spirituality, economical impact, protocols, reviews of studies in progress, and with cancer and an increasing cancer incidence sexuality and body image are still debated analysis of studies completed. This meeting compared with a reduction of oncology and topics. Some dimensions may present specific should be multidisciplinary and include clinical other hospital beds. The challenge is to develop problems of definition and measuring. Assess staff who are not involved in the research flexible and competent palliative care QoL means assess what the patient thinks, feels, process. The meeting services to develop new organizations in order to integrate the care of wishes: this is subjective. QoL assessment is very research but also to educate staff about the cancer patients with a need for supportive care difficult in advanced patients, and is impossible complexities and challenges of conducting with those at the end of life. Palliative care has in terminal patients. research in palliative medicine. It is important through the team approach and focus on The presence of poli-pathology is frequent; that new ideas are brought forward in a positive symptom control and quality of life issues to particularly in elderly patients. There may also atmosphere which encourages general take on the challenge from this large group of present complex situations derived from the participation. The emphasis should be on patients. A parallel challenge is not to loose the great number of drugs. An important challenge refining the question which is being asked and history and soul of the hospice movement. An are drug interactions. encouraging simplicity of thought and Design. increasing need for palliative care competence The short survival and the difficulties in the Careful consideration should be give to is also seen in the care of elderly in nursing prognosis, obstacles the research projects, and avoiding complexity. The approach to the homes and other similar non hospital the particular vulnerability of the patients design of clinical protocols in palliative institutions. induces in care givers the fear of exposing them medicine has significant ethical, practical, to scientific over treatment and/or transmitting operational and statistical challenges. Rigid them unrealistic hope by including them in a exclusion criteria can destroy a study. Over Abstract number: 382 study. emphasis on complex or randomized studies Presentation type: Invited Two fundamental aspects are acquired: The may prevent any research being accomplished. Poster number: multidimensional nature of the problems and Practical considerations of the design of subjectivity. For this reason also qualitative recording forms, and using a protocol template Legal background of palliative care research is important in PallMed. We ask help the process. Study diaries are very development in Hungary, strength and directly to the patient! Last but not least the important to avoid patient burden. Many review weak points need to approach research in a boards are unfamiliar with the issues of research multidisciplinary way must be considered. in palliative medicine; it is important to explain Katalin Hegedus, Dept of Bioethics, Budapest, Due to the above the application of the the rationale for the design carefully to avoid HUNGARY scientific methodology in Palliative care must rejection. Accrual to well designed studies can be more thoughtful. be a challenge, as is attrition during the study Object of study: To present the legal and these issues should be accounted for in background of the Hungarian palliative care study design and biostatistical advice. development and to clarify results and some Abstract number: 384 typical mistakes from the point of view of the Presentation type: Invited national palliative association (HHPA). Poster number: Methods: Analysis and comparison of some important documents: Hospice and patient’s Choosing the right research design right chapters of the Health care act (1997); National Guidelines (2002); Minimum Irene J Higginson, Department of Palliative Care Standards (2004) and analysis of role of the and Policy, London, GREAT BRITAIN HHPA as a coordinator of this process. Results: Strong points of the legal documents: A badly analyzed study can always be re- strengthening the knowledge of palliative care; analyzed, but a badly designed study will introducing structures for implementation of cannot be saved by the analysis; instead another

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Abstract number: 386 by the application of oxygen, particularly in The role of oxygen, pharmacological Presentation type: Invited patients with an intrapulmonary shunt greater interventions, and non-pharmacological Poster number: than 25 per cent. Some strategies for the interventions has been better clarified by recent treatment of dyspnoea in palliative medicine clinical trials. The results of some of this Pain trials in palliative care can be deduced from these pathophysiological research and future studies in the area of considerations. These are, above all, measures dyspnea will be discussed. Christoph Ostgathe, Klinikum der Universität which serve to reduce increased breathing zu Köln, Köln, Germany labour and frequency, improve CO2 elimination and have a positive impact on Abstract number: 390 Pain is one of the most common symptoms in individual distressing factors such as anxiety Presentation type: Invited patients suffering from a progressive disease and and fear which may influence the perception of Poster number: treatment is a challenge to physicians, nurses the symptom of dyspnoea. and all the other professions involved in the Risks and benefit of opioid therapy patients care. According to its importance pain should be Abstract number: 388 Carla Ripamonti, Istituto Nazionale Dei Tumori, one of the major focuses of research in Presentation type: Invited Milano, ITALY palliative care. But like in other issues palliative Poster number: care patients and the palliative situation itself Some RCTs have been carried out on the use of complicate the design of studies that are able to Dyspnoea in neurological diseases systemic opioids in the treatment of dyspnea lead to valid and specific results as well as to associated with cancer or COPD. Most of the clinical advances in pain management. Ethical Christian Neudert, Department of Neurology, studies found that systemic opioids of different issues and methodological problems (with high Munich University Hospital – Grosshadern types, given in different dosages and by various drop out rates, unspecific or fast change in Germany routes of administration, are capable of patients general condition, the difficulty to relieving dyspnea. However, a randomized, establish controls, low patient numbers) are the Dyspnoea caused by terminal neurological double-blind, crossover trial carried out to barricades for this necessary research. Down to diseases such as amyotrophic lateral sclerosis or compare the efficacy and tolerability of the present day the activity for (pain) research muscular dystrophy, results from a progressive sustained-release morphine compared with in palliative care is still too low. The advances in weakness of the respiratory muscles whilst placebo in 16 COPD patients with dyspnea pain therapy are mostly adopted from other maintaining a normal gas exchange rate. As the showed no differences in the dyspnea score fields of pain research. But the patient in muscles weaken the tidal volume diminishes, between oral morphine and placebo. Moreover, palliative care is specific so these results are causing alveolar hypoventilation. This results in almost all the subjects experienced morphine- 9 APRIL useful only in some degree. We need research insufficient oxygen supply which leads to related adverse effects. A number of possible that considers the particular requirements arterial hypoxia, whereas the reduced mechanisms have been postulated, but the associated with a progressive disease and with exhalation of carbon dioxide generates chronic exact mose of action is unknown. Morphine the patient in an existential situation. hypercapnia. Typical symptoms are increasing exerts a depressant action on the respiratory To overcome these obstacles of pain research daytime fatigue, morning headaches, cognitive centers. The depressant effect is thought to be in the palliative care setting collaborations of impairment, and sleep disturbances – and compensated by respiratory reserve, so that researching units, concise research questions, ultimately hypercapnic coma and central respiratory failure does not occur. As well as a SATURDAY clear study designs and appropriate asphyxia may occur. central action, a peripheral action of morphine methodologies are fundamental. An effective drug therapy of primary may be involved. Controlled clinical trials on neuromuscular respiratory dysfunction is the symptomatic effect of nebulized opioids in currently not available. The intervention of COPD and in cancer-related dyspnea have been Abstract number: 387 choice is the non invasive ventilation (NIV). carried out, but the results are conflicting. A Presentation type: Invited The administration of oxygen is to be direct action of morphine on the lung has been Poster number: considered for cases of hypoxia which do not postulated. Pharmacokinetic studies suggest respond to NIV. that the systemic bioavailability of nebulized Dyspnoea in Palliative Medicine – What’s Frequently the mucous from the upper and morphine is extremely poor, varying from 4 to New? Introduction and some lower airways cannot be appropriately 8%. A single-dose randomized controlled trial of pathophysiological aspects expectorated because of the weakened nebulized morphine in cancer patients with respiratory muscles. The ensuing accumulation dyspnea showed no symptomatic benefit of Eberhard Klaschik, Zentrum für of thick airway secretion is to be treated nebulized morphine over placebo. In patients Palliativmedizin, Bonn, GERMANY, Katri Elina stepwise: At first mucolytic drugs and breathing with COPD only two studies showed some Clemens, Malteser Krankenhaus Bonn exercises should be initiated. Subsequently, positive Results. An increase in exercise Hardtberg, Bonn, GERMANY, Friedemann devices for intratracheal mobilization of endurance with morphine-6-glucuronide 4 mg Nauck, Malteser Krankenhaus Bonn Hardtberg, mucous by a pulsed air stream and for compared with morphine 12.5 mg and placebo Bonn, GERMANY mechanical cough assistance may need to be was observed. This may reflect potency of the introduced. nebulized opioids as a determining factor for Dyspnoea is the term for the sensation of As these therapeutic interventions improve the efficacy. A patient required assisted breathlessness (air hunger). Since this is a the patients quality of life and potentially ventilation after the 1st dose of nebulized subjective experience, only the patient himself prolong survival they should be offered to all morphine (4 mg) + dexamethasone. is in a position to judge its severity. There is no symptomatic individuals. monocausal explanation for the occurrence of dyspnoea. The following factors are essential Abstract number: 391 triggers of dyspnoea: increased breathing effort, Abstract number: 389 Presentation type: Oral disproportionally high breathing labour in Presentation type: Invited Poster number: relation to oxygen uptake, gas exchange Poster number: disorders, irritation of the respiratory centre, Swiss Palliative Care Research Initiative subjective factors. General functional disorders Dyspnea in Palliative Care – What’s New? (Swiss-PCRI): A progress report which are common in various diseases of the lung and normally accompanied by dyspnoea Eduardo Bruera, Department of Palliative Care Florian Strasser, Oncology & Palliative are the following: alveolar hypoventilation, & Rehabilitation Medicine, USA Medicine, Oncology/Hematolog, St-Gallen, obstruction, restriction, diffusion disorders, SWITZERLAND, Jacqueline Binswanger, intrapulmonary shunt. While in case of In recent years there have been significant Cantonal Hospital, St-Gallen, SWITZERLAND, obstruction and restriction, dyspnoea is mainly advances in our understanding of the Operational Board SSPC Steffen Eychmueller due to increased breathing effort, in case of assessment and management of dyspnea. (St. Gallen). Roland Kunz (Schlieren), Francoise hypoventilation it is to be explained by the Dyspnea in palliative care is progressively Porchet (Lausanne), Frederic Stiefel (Lausanne), increase of pCO2 but not by the decrease of recognized as an incidental syndrome. Most Florian Strasser (St. Gallen), Michel von Wyss pO2. In case of diffusion disorders, the patients suffer acute short-lasting exacerbations. (La Chaux de Fonds), Swiss Society of Palliative breathing effort increases as a consequence of The nature of this syndrome explains the Care SWITZERLAND reduced compliance, but not to an extent that limited success of pharmacological could explain the occurrence of dyspnoea in interventions. The frequent association between Objective. Swiss PCRI aims to support sustained itself. In hypoxemic patients, the application of dyspnea and cognitive failure or overwhelming development of PC research. The first step oxygen may reduce or eliminate dyspnoea. In fatigue explains difficulties with patient documents the potential for PC research patients with increased intrapulmonary shunt accruals to clinical trials. Recent studies have development. Subsequent steps will include but no changes in the respiratory mechanics, demonstrated the possibility of conducting national PC research meetings and grant most likely dyspnoea may be caused by studies including response to exercise even in application. The main hypothesis of the first hypoxemia. This cannot be fully countervailed the palliative care setting. step is that information about PC researchers,

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their projects, and the identification of barriers with wider community and specialist palliative Abstract number: 394 for research, will provide a strategic tool to care services. Conclusions: A significant Presentation type: Oral further promote research. Methods. To identify proportion of older people die in care homes, Poster number: multidisciplinary professionals interested in PC the majority within the home rather than in research, accepted abstracts to PC and oncology hospital or hospice. Appropriate resources are Palliative Care in Community Hospitals in meetings (2002–2004: EAPC, SSPC, MASCC, required to ensure these deaths are managed in the UK: an under recognised resource for ASCO) were screened and a databank search a way that leads to good quality care for these older people (Medline, CINHAL) performed. SSPC board dying residents. members submitted accepted grants. To identify Sheila Payne, Palliative & End-of-Life Care and review PC projects potentially significant to Research Group, Sheffield, GREAT BRITAIN, improve care a letter-of-intent (LOI) of PC Abstract number: 393 Sheila Hawker, University of Southampton, research projects will be invited in fall 2004. Presentation type: Oral Southampton, GREAT BRITAIN, Chris Kerr, National and international (EAPC RSC) experts Poster number: University of Southampton, Southampton, will review the LOI’s and assign 2 first prices. To GREAT BRITAIN, David Seamark, The Honiton identify projects outside SSPC and gain The circumstances, experiences and Group Practice, Honiton, GREAT BRITAIN, mentors/collaborators, academic institutions preferences of older people at the Carol Davis, University of Southampton, working compatible with the PC definition end of life Southampton, GREAT BRITAIN WHO 2002 will be approached. To identify barriers and supporting factors for PC research, Jane Seymour, Palliative & End-of-Life Care Background There are 478 community hospitals personal and group interviews based on a Research Group, Sheffield, GREAT BRITAIN, Ros in the UK, most provide end-of-life care. They semistructured questionnaire (Bar-Q) will be Witherspoon, University of Sheffield, Sheffield, have the advantage of being located within easy locally performed. Results. 134 authors of 281 GREAT BRITAIN, Merryn Gott, University of reach of family members, are staffed by local abstracts were identified, mainly physicians and Sheffield, Sheffield, GREAT BRITAIN, Helen people and in many hospitals general nurses from 7 regional centres. Review of Ross, University of Sheffield, Sheffield, GREAT practitioners can maintain continuity of care. It impact of identified articles on PC is ongoing. BRITAIN, Sheila Payne, University of Sheffield, is unclear the extent to which these hospitals Approx. 0.5 Mio Euros PC grants were declared. Sheffield, GREAT BRITAIN have the resources, facilities, personnel and Identification of PC research activities outside skills necessary to offer general palliative care. the ‘inner circle’ through search engines, Background and aim In the developed world, Aims This project aimed to identify the extent homepages (universities, others), and research 84% of deaths occur among people aged over to which community hospitals were involved in portals, revealed no new projects. Bar-Q 65, and this is likely to rise across the next three providing palliative and terminal care to older includes items exploring methodology decades. This study was commissioned by a people with end stage cancer and non- (experiences, formal training, mentoring), major UK charity, Help the Aged, to review malignant diseases. Method Organisational case institutional support (structure, time, attitude), evidence regarding the circumstances, studies were conducted in six South of England competing for grants, and carrier experiences and preferences of older people in community hospitals to identify how care was considerations. Conclusion. The development relation to end of life care, and to make delivered from the perspectives of staff (n=125), of PC research may require a specific national recommendations for the improved care and older patients (n=18), carers (n=11), bereaved research support program for a certain time support of older people who are approaching carers (n=51) and approximately 900 hours of period. death and their carers. Method The project has non-participant observation. Data were involved three activities: a literature review; a analysed using descriptive statistics of staff secondary analysis of data; and a consultation questionnaires and content analysis of users’ Abstract number: 392 exercise. Literature review: a review of primarily interview transcripts and field notes. Results Presentation type: Oral UK policy and research based literature relating Patients and carers valued the accessibility, Poster number: to palliative and end of life care, ageing, chronic flexibility, and personal care afforded to them. illness and informal caring. Secondary data Bereaved carers were largely satisfied with care Managers’ Perspectives on Death and analysis: a targeted secondary analysis of data for themselves and their relative but some Dying in Care Homes for Older People from a study of 77 older adults views about end commented on the noisy environment and of life care. Consultation exercise: a pressures on staff. Staff indicated confidence in Katherine Froggatt, School of Nursing and presentation of a summary of key issues and their knowledge about communication, pain, Midwifery, Sheffield, GREAT BRITAIN, Sheila small group discussions about the range of equipment use and symptom control but lacked Payne, University of Sheffield, Sheffield, recommendations that should be made. 22 education in spiritual, psychological and GREAT BRITAIN people took part, the majority of whom were bereavement support. Key issues were older adults. Findings Many older people competing priorities between different types of Care homes in the UK provide long term care approaching the last phase of their lives patients, problems with skill mix, an emphasis for frail older people. Whilst care homes are a experience systematic and structurally rooted on terminal rather than palliative care. home for life many of these older people die in disadvantage. Very old people and those with Conclusions Competing priorities, staffing this care setting. These deaths require support co-morbid states in whom dying is not pressures and the unpredictability of dying in for the older person, their family and staff. Aim: recognised readily, are especially at risk. The old age can lead to a failure to recognise A postal survey of care home managers in South issues surrounding death in old age have been palliative care needs until the final terminal Yorkshire was undertaken to: • establish the neglected and it has been assumed that at the stage. nature of deaths within the care homes ß end of life there are few opportunities for identify managers’ perspectives of the needs of individuals to be engaged in the promotion of residents and family • describe the resources their own well being. We show that many older Abstract number: 395 available to the home • describe managersí people do wish to engage with these subjects. Presentation type: Oral priorities for improving end-of-life care We offer recommendations for the enhanced Poster number: Methods: The managers of 261 care homes in quality of life of all older people facing death South Yorkshire were surveyed using a postal and their families / friends and suggest ways in PLACE OF DEATH IN ADVANCED CANCER questionnaire. The data was analysed using which they can be sensitively involved in AMONG OLDER PEOPLE:A QUALITATIVE descriptive statistics. Responses to open consultations about service and education SYSTEMATIC LITERATURE REVIEW questions were coded using the N-VIVO development in this area. package. Results: Responses were obtained from Anna Lock, Palliative Care, Birmingham, GREAT 46% (n= 115) of the managers surveyed. The BRITAIN, Irene Higginson, Department of response for useable questionnaires was 33% Palliative Care and Policy, King’s College, (n=81). A third of deaths in 2003 occurred in London, GREAT BRITAIN hospital and 1% in a hospice. The vast majority (85%) of deaths were from non-cancer Background: The World Health Organisation conditions. 13% of homes had at least one predicts that more than one billion people will resident with an advanced care plan. 65% of be over 60 years old by 2025. It is important to homes had accessed training relevant to the plan now on the best ways to providing care care of dying people. The main providers of and support until death for this group, most of education were in-house staff, specialist whom will die of chronic diseases, such as palliative care and funeral directors. 65% of cancer. Aim: To describe evidence of the effect homes had access to 24 hour palliative care of ageing on place of death of cancer patients. support. Priorities for future development with Methods: Systematic literature review of respect to end-of-life care identified by the Medline 1966–2003, St. Christopher’s Hospice managers concerned improving care for the library database and previous 10 years of dying person and their family, ensuring staff are Palliative Medicine. Studies with place of death adequately prepared and integration of the care of adults dying from cancer in any country with

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place of death as part of the research question Abstract number: 397 mortality patterns, provider and organizational were included. Data was extracted to Presentation type: Oral characteristics, end-of-life care practices, staff standardised forms and contrasted between Poster number: and family education needs, and LTC policy studies. Results: We identified 23 studies (N recommendations. Results: Directors of Care ranged from 56 to 1. 3 Million) from 10 Physical exercise intervention in palliative from 426 (76% response rate) licensed LTC different countries that assessed this. The cancer patients; a phase II study. Are the facilities completed the postal survey studies were all observational, except one which patients able and willing to participate? questionnaire. Substantial challenges were used a randomised controlled method. 12 of identified in staffing levels, communication, the studies increasing age among adults was Line Merethe Oldervoll, Department of Cancer and staff ability in providing quality of end-of- found to be associated with place of death; 9 Research and Molecular Medici, Trondheim, life. Respondents also identified concerns reporting a higher proportion of care home NORWAY, Jon Håvard Loge, Department of relating to attending physicians and their deaths and 5 a reduction in home deaths with Behavioural Sciences in Medicine, Oslo, provision of end-of-care. Logistic regression increasing age. In contrast 2 studies, from NORWAY, Hanne Paltiel, Palliative Unit, St. analyses identified the best predictors of Canada and Italy, demonstrated an increase in Olavs Hospital, Trondheim, NORWAY, May providing quality care for dying residents: 1) home deaths with increasing age. Hospital Britt Asp, Palliative Unit, St. Olavs Hospital, consensus in the facility about what constitutes death was more varied with equal reporting of Trondheim, NORWAY, Stein Kaasa, Department quality end-of-life care, 2) sufficient pain increased and reduced deaths in hospital with of Cancer Research and Molecular Medici, management expertise for quality care of the aging. The overarching trend was for Trondheim, NORWAY dying, 3) having staff in the facility that are able institutional death to increase into older age. to accurately assess when a resident is dying, 4) One study specifically assessed the factors Background: Physical exercise has during the having attending physicians in the facility that which influenced place of death in older past years become more common in oncology have the necessary knowledge and skills to people. Conclusions: Resources and research rehabilitation and is also proposed for use in provide quality care, 5) having less than 100 needs to be targeted to ensure that appropriate palliative care. However, the empirical beds in the facility, 6) having staff that have the end of life care is available for older people, who foundation for such a proposal is limited and ability to address multi-cultural preferences, 7) appear to be likely to die in institutions. recent reviews ask for more research within having good communication among facility physical rehabilitation of palliative cancer staff regarding care. Conclusion: The findings patients. Purpose: In order to identify patient revealed serious problems in the care of the Abstract number: 396 populations who are willing and able to dying resident in LTC facilities. This Presentation type: Oral undertake a physical training program, a information contributes to the current Poster number: prospective phase II intervention study has discussion on policies for meeting the care recently been completed. The primary aim of needs of residents in LTC facilities 9 APRIL The Palliative Care Needs Of Elderly the present study was to investigate how many Patients in an Acute General Hospital of the palliative patients were willing and able to participate and complete a group exercise Abstract number: 399 Feargal Twomey, Aintree Palliative Care Team, programme adjusted for the individual patient. Presentation type: Oral Liverpool, GREAT BRITAIN, D McDowell, Patient population: Patients with any incurable Poster number: University Hospital Aintree, Liverpool, GREAT cancer disease and short life expectancy (less BRITAIN, GD Corcoran, University Hospital than one year) at two outpatient clinics were Systematic ‘ethnographic’ review of SATURDAY Aintree, Liverpool, GREAT BRITAIN invited to participate in an exercise programme palliative care professionals’ at the hospitals. The group met twice a week experiences of caring for people with Aims This study is a review of the management over a six week period. Results: A total number cancer at end-of-life of elderly patients approaching death in an of 101 consecutive patients were asked for acute general hospital. An emphasis was placed inclusion. Twenty seven patients did not want Elizabeth McDermott, Internation Observatory on examining the documentation of both to participate and 11 patients did not respond for End of Life Care, Lancaster, GREAT BRITAIN, medical and nursing staff and as to whether the (total n=38). Sixty three patients agreed to Amanda Bingley, Lancaster University, patients could have been managed and have participate. Eight patients dropped out due to Lancaster, GREAT BRITAIN, Carol Thomas, died in the community. Methods A medical problems or sudden death before they Lancaster University, Lancaster, GREAT retrospective review of the casenotes of the 25 were included in the study. Thus fifty five went BRITAIN, David Clark, Lancaster University, patients who died under the care of a medicine through a physical examination and filled in Lancaster, GREAT BRITAIN for the elderly (DME) service during November self-report questionnaires. Five patients 2003. Data collected included basic withdrew before they entered the program and Aims: To (systematically) review and analyse demographics, circumstances of admission and 17 dropped out during the program due to palliative care professionals’ written accounts of details of end of life care. Results The patients sudden death, medical or social reasons (total caring for people with cancer who are were 72% female with a mean age of 81.4 years. n=22).Thirty three patients completed the knowingly facing death in order to provide 64% were admitted from their own homes, 20% exercise program. Conclusions: A high another source of knowledge or ‘evidence’ from nursing homes and 8% each from another proportion of incurable cancer patients are about patients’ needs and views and responses family home and from sheltered willing to participate (63%) in a structured to them. Method: Systematic review accommodation. Admission may have been exercise programme. Despite being severely ill, methodology and qualitative research avoidable in 24% of cases. Only one patient had the total drop out rate was 40%, which is similar techniques were utilized to locate a range of an active malignancy. In 16% no to exercise intervention in curable cancer material written by palliative care professionals acknowledgement of a terminal phase was patients. in a variety of disciplines across different documented, in 20% there was no institutional settings. The search strategy was documentation of a discussion with the patient designed to find published reflective narratives or family regarding dying and 43% of DNAR Abstract number: 398 (not original research) in the English language decisions were made in the last 48 hours of life. Presentation type: Oral from 1975 onwards, which focused on the Of those patients recognised to be in pain, 50% Poster number: experiences of health professionals caring for had no prn analgesia prescribed, 67% of those patients with cancer as they approached their agitated had no prn anxiolytic prescribed, 75% Examining the status of end-of-life care in death. The extensive search included electronic of patients with known nausea and vomiting canadian long term care facilities databases (e.g. Medline; CINAHL), journals, had no prn anti-emetic charted and 33% of archives, research networks and the internet. patients with pharyngeal secretions were not Kevin Brazil, Clinical Epidemiology and The data analysis was conducted in two stages; a prescribed an appropriate agent. Conclusions Biostatistics, Hamilton, CANADA, Paul Krueger, quantitative analysis and a qualitative discourse This study reveals improvements to be made in McMaster University, Hamilton, CANADA, thematic analysis. Results: The search strategy the terminal care of elderly patients dying from Michel Bedard, Lakehead University, Thunder yielded 2224 possible articles, books and book non-malignant disease in acute medical care, Bay, CANADA, Mary Lou Kelly, Lakehead chapters. The inclusion/exclusion criteria were many of which could be addressed by a University, Thunder BAy, CANADA, Carrie then applied independently by two researchers; programme of education in the palliative care McCainey, McMaster University, Hamilton, and 204 pieces of literature met the criteria for principles of communication, symptom control CANADA inclusion in the review, with physician (34%) and good documentation. The growing and nurse (25%) authors most prominent. involvement of palliative care and DME Objectives: To assess the current state of end-of- Discussion: Over the last 30 years, palliative care professionals in community care should help to life care in Canadian long-term care (LTC) professionals have been steadily writing about limit unnecessary admissions of terminally ill facilities. Methods: All licensed LTC facilities their experiences of caring for people with elderly patients to hospital. within the province of Ontario were included in cancer at end-of life. Representations of the the postal questionnaire survey. Survey cancer patient and professional practice have questionnaires were mailed to the designated shifted from views of the individual as an Directors of Care at each facility. The ‘object’ of medical care, to those of a person instrument collected information about who desires autonomy and self-determination.

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 85 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

However, preliminary analysis from this study demographic data, the cognitive status was anxiety – cannot be eradicated. The described suggests that palliative care professionals’ checked for all using MME-30. When indicated coping strategies make the experiences understanding of patient autonomy is partial, complementary test were used (blood sampling, endurable and possible to handle. and as a consequence expectations and practice pulsioxymetry, cerebral scanner, etc.). The surrounding end-of life care for cancer patients evolution of delirium after treatment was made may place limits upon the way in which they by clinical judgement plus cognitive testing. Abstract number: 403 face death. RESULTS: During the study period 236 patients Presentation type: Oral were visited. Twenty eight (11.8%) patients were Poster number: diagnosticated of delirium; the mean age was Abstract number: 400 66.6 y and 57.1% were men. Regarding the Specialists’ religion and actual end-of-life Presentation type: Oral primaries in 28.6% of patients was lung, 10.7% decisions in neonates and infants Poster number: breast, 10.7% prostate, 10.7% gynaecologic, 10,7% digestive, 7.1% head & neck, and 21.5% Veerle Provoost, Department of Medical INTERVALS UNTILL DEATH AMONG others. All patients with delirium fulfil DMS IV Sociology, Brussels, BELGIUM, Freddy Mortier, CANCER PATIENTS REFERRED TO A criteria, and at the moment of diagnosis 90% of Centre for Environmental Philosophy and PALLIATIVE CARE PROGRAM IN A them had a abnormal MME-30, in 10% was Bioethics, Ghent University, Ghent, BELGIUM, COMPREHENSIVE CANCER CENTER impracticable. Regarding the main aetiology; in Filip Cools, Department of Paediatrics, the 42.9% the main cause were psychotropic Academic Hospital, Free University of Brussels, Wen-Wu Cheng, TCM, Shanghai, CHINA, Jie agents (75% strong opioids, 16.6% weak opioids Brussels, BELGIUM, José Ramet, Department of Willey, The University of TX, M.D. Anderson and 8.4% antidepressants), in 25% was Paediatrics, Academic Hospital, Free University Cancer Center, Houston, U. STATES, J. Lynn unknown, in 17.8 dehydration and in 14.3% of Brussels, Brussels, BELGIUM, Luc Deliens, Palmer, The University of TX, M.D. Anderson brain metastasis. After 7 days of treatment Department of Medical Sociology, Free Cancer Center, Houston, U. STATES, Tao Zhang, 46.5% were completely reversed, 32.1% partially University of Brussels, Brussels, BELGIUM The University of TX, M.D. Anderson Cancer reversed, 14.3% had no clinical changes, 7.1% Center, Houston, U. STATES, Eduardo Bruera, deteriorates. Ten (83.3%) patients with delirium Objective: To study the relation of physicians’ The University of TX, M. D. Anderson Cancer of pharmacological cause obtained a complete religion with their actual end-of-life decisions Center, Houston, U. STATES reversal and 2 (16.7%) a partial one. (ELDs) in neonates and infants. Method: All CONCLUSIONS: Delirium in ambulatory physicians who signed a death certificate of a In recent years, the number of advanced cancer patients, in our milieu, could be considered live born neonate or infant in a one-year period patients referred to palliative care programs has quite high. The main cause involved is the use (1 August 1999 until 31 July 2000) in Flanders, increased in the United States. The purpose of of opioids. Due to the general good response to Belgium, received an anonymous questionnaire this retrospective study was to investigate the treatment, when the cause of delirium is due to regarding their attitudes toward ELDs and their intervals between cancer diagnosis and death, drugs or dehydration; early diagnosis through actual ELDs in neonates and infants. Results: Of and the interval between the palliative care regular cognitive screening and a high level of all 175 physicians who received a questionnaire, initial consult and death. The charts of 340 suspicion should be recommended. 121 responded (response rate: 69.1%) for a total patients with advanced cancer initially referred of 253 deaths. The unit of analysis is the death to the palliative care program at The University certificate where an ELD was made by a of Texas M. D. Anderson Cancer Center between Abstract number: 402 specialist (N=142). There is no significant September and December 2003 were reviewed. Presentation type: Oral relation between physicians’ religion and the Available demographics, date of cancer Poster number: occurrence of ELD, but there is between religion diagnosis, date of diagnosis of advanced disease, and selfreported intention and type of ELD. date of death, and other available data were Existential loneliness and existential Physicians who do not find religion important determined. Our study included 173 males and coping in palliative home care in ELD-making and nonreligious physicians 167 females with median age of 62 years (range, significantly more often explicitly intended to 3–90 years). The four main reasons for referral Lisa Sand, Social Worker, ASIH, Unit for hasten death (p=0.002 and p=0.001) and used to palliative care were pain (76.2%), fatigue Advanced Medical Home Care, Älvsjö, lethal drugs more frequently (p=0.048 and (68.5%), depression/anxiety (47.7%), and loss of SWEDEN, Peter Strang, MD, PhD, Professor, p=0.004). Physicians who find denomination appetite (46.5%). The median time from the Karolinska Institute and SSH, Stockholm, important in ELD-making had significantly less date of primary cancer diagnosis to death was SWEDEN explicit intention to hasten death (p<0.001) and 33 months (95% CI, 26–42). The median time did not use lethal drugs. They more often opted from the date of diagnosis of advanced disease Do palliative care patients and their relatives use for the use of opioids for the alleviation of to death was 9 months (95% CI, 8–11). The existential and spritiual coping strategies even if suffering then for other forms of ELDs. No median time from the date of palliative care they are not religious? How are they expressed significant relation was found between referral to death was 58 days (95% CI, 47–66). and what are their functions? Informants and physicians’ religion and either the consultation All three medians were estimated using the methods: Tape-recorded semi-structured of parents nor colleagues about the ELD, nor Kaplan-Meier method. 340 values were used for interviews (45–90 minutes) were conducted the frequency of ELDs based on a ‘quality of each of the above estimates; 226 deaths and 114 with 40 non-religious informants (20 terminal life’ consideration. Conclusions: The religion of censored survival values. We conclude that cancer patients and 20 family members). A physicians is associated with specific ELD- advanced cancer patient’s referral to palliative maximum variation sampling strategy was used. making patterns, both for intention as for type care programs often occur late in the history of The data were analysed using a hermeneutic of decision. their illness. Joint oncology/palliative care is (interpretative) approach. Results: The feeling of required in order to facilitate earlier patient loneliness associated with severe illness and access. facing impending death was difficult to handle. Abstract number: 404 The existential loneliness/ isolation was Presentation type: Oral described in terms of 1) being ‘thrown’ into a Poster number: Abstract number: 401 non-familiar and lonely situaion 2) feeling Presentation type: Oral estrangement from oneself and one´s reactions Expanding the boundaries of care in the Poster number: 3) being separated from others, from the hospital setting – baseline data community and the everyday world 4) being Delirium in the outpatient clinic in considered a ‘case’, rather than a living person Doiminic O’Brannagáin, Palliative Care, palliative care service in an institute in the health care context. Both patients and Drogheda, IRELAND, Mervyn Taylor, Irish of cancer family members felt a need to communicate Hospice Foundation, Dublin, IRELAND, Orla thoughts and feelings, but did not do so, Keegan, Irish Hospice Foundation, Dublin, Gala Serrano-Bermudez, Palliative Care Service, because of inability or problems in formulating IRELAND L’Hospialet-BCN, SPAIN, Josep Porta-Sales, the feeling. Further, they did not want to worry Institut Catala d’Oncologia, L’Hospialet-BCN, others. In order to cope with existential Objective: This paper describes from national SPAIN isolation the informants used strategies related and local perspectives, experiences and to sources of life and fellowship: social relations, expectations of citizens, staff and community as AIM: Epidemiology of delirium is poor studied a deepened relation to nature and existence, i.e. they relate to people dying in acute hospital in outpatient clinics. We whished to know the strategies to ‘fuse’ with something bigger. settings. The data presented here are part of a frequency of delirium in our clinic, its aetiology Connection with anything living or familiar, larger programme focusing on cultural, and its evolution after 7 days of treatment. such as everyday life and routines produced also attitudinal and tangible change in one hospital METHODS: We designed a descriptive study, a sense of relief. Discussion: Palliative care setting. Methodology: Multiple methods were enrolling patients consecutively who attended patients and their families who define employed to create a baseline of information. A the palliative care service outpatient clinic from themselves as non-religious also develop nationally representative telephone survey April to August 2004. Delirium diagnostic was existential or spiritual coping mechanisms, as (n=1,000) investigated care preferences, made using DMS IV criteria. Apart from the basic givens – existential isolation and death impressions of hospital care for dying patients

86 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

and the extent to which Irish citizens had made Influence and Evidence. Conclusion: The outcomes. Methods: Three strategies were used: plans or discussed with others arrangements understanding of the rationale for the deferral (1) A review of the literature; (2) Two focus around care at the end of life. Nine focus group of crossing the threshold is a significant finding groups with palliative care nurses, palliative care discussions with hospital staff from clinical, and will guide education initiatives to improve physicians, diabetes nurse educators and professional and household sectors explored clinical practice. endocronologists; (3) Sixty seven nurses and local observations around good and poor doctors completed a questionnaire about practice in caring for dying patients and their current practice related to diabetes at the end of families. An ethnographic approach used video Abstract number: 406 life. Results: The literature review identified that recording to examine the physical and symbolic Presentation type: Oral there is minimal published data describing or environment of the hospital. Summary of Poster number: guiding practice in this area. Results of the focus Results: Similar to other Western countries the groups and questionnaires showed that health majority of Irish people die in hospitals. Our Are Patients with Dementia able professionals perceive diabetes management at survey results show that 67% of respondents to make End-of-Life Decisions? A the end of life to be very challenging due to a would want to be cared for in their own home Theological Perspective on Advance lack of guidelines to support clinical decisions. and of these half felt that care at home would Health Care Directives When patient death appeared imminent health be available to them. The vast majority (87%) professionals found it difficult to determine: (a) felt that there was scope for improvement in Traugott Roser, Interdisziplinäres Zenturm für the optimal frequency of blood glucose hospital care for people who are dying or Palliativmedizin, München, GERMANY monitoring; (b) what might be considered a terminally ill. Over a quarter of those surveyed normal blood glucose range, and (c) to ascertain said that someone close to them had died in a The paper questions prevailing concepts of appropriate anti-hyperglycaemic medication hospital during the previous 12 months. Focus autonomy used in many advance health care doseages. Participants recognised the group discussions uncovered discipline-specific directives. Referring to problems patients with importance of greater collaboration between and common challenges in providing humane dementia type face during the progress of the palliative care health professionals and diabetes care for dying patients and their families. Video disease, the paper draws attention to the specialists. Conclusions: Findings from this tour and photographs of the hospital illustrate fundamental conflict between advance decision research suggest that guidelines and education the patient’s journey and are supplemented by making in an early state of the disease and are required to assist health professionals as the chaplain’s comments. These data directly actual preferences of patients. It demonstrates they care for patients with diabetes at the end of input to the system-wide change programme the ambivalence of a liberal understanding of life. being developed for the hospital. Conclusions: autonomy represented in current living will Change in an individual hospital is being documents. In the second part the paper framed relative to national public opinion and develops a theological understanding of the Abstract number: 408 9 APRIL qualitative. concept of personhood based on relatedness Presentation type: Oral and openness: the social condition of the Poster number: individual being is part of the Christian idea of Abstract number: 405 personhood. Concepts of autonomy should not Steroid Myopathy In Advanced Cancer Presentation type: Oral neglect but rather respect the social Poster number: constitution of the self. Even more if human Louise Exton, Kent, GREAT BRITAIN, Ann

existence is basically understood as fragmented Elfred, St Christopher’s Hospice, London, SATURDAY Crossing the Threshold: A study of existence, as the late German theologian GREAT BRITAIN hospital doctors and nurses clinical Henning Luther pointed out: Human being – at decision making in the terminal any given time in life – can only be grasped in Background: Steroids are commonly used in the trajectory fragments. A person is only part of what he /she management of advanced cancer. Proximal once was as well as he /she is part of what he / myopathy is a well-recognised and serious side Mary Hayes, Macmillan Palliative Care Team, she will be in the future. Yet a fragment always effect. Respiratory muscles may also be affected. Camberley, GREAT BRITAIN, Dr Vasso contains the idea of the whole: the fragment Aim: To prospectively evaluate patients with Vydelingum, European Institute of Health and contains wholeness even in the very absence of advanced cancer on steroids for the Medical Sciences, Guildford, GREAT BRITAIN this wholeness. Turning back to patients with development of limb & respiratory muscle dementia, a strategy for advance decision weakness. Methods: Evaluations were Background: The accurate and timely diagnosis making will regard both aspects: social performed at baseline, 2 and 4 weeks following of transitions within the terminal trajectory can relatedness, and fragmented identity. A solution initiation of steroids and at monthly intervals optimise patient care by facilitating the lies in the idea of relational autonomy: Patients thereafter. Limb muscle strength was measured transition from active to palliative care and point out a trusted person as health care using the MRC scale. Respiratory muscle reduce unnecessary interventions and durable power of attorney (DPA). DPAs are the strength was measured using an adapted treatments. There is currently a dearth of appropriate means to express patients’ portable mouth pressure meter to record sniff research exploring the decision making process autonomy, because they build on the relations a nasal inspiratory pressure (SNIP). Dyspnoea was Aim: To gain an understanding of the clinical person has developed during his / her lifetime. assessed using a numerical visual analogue scale decision making processes used by doctors and DPAs also make sure surrogate decision making (VAS). Quality of life and symptoms were nurses caring for terminally ill patients within a is connected to the preferences of the patient. monitored using the European Organisation for general hospital setting, specifically with regard They respect both the past of a patient as well as Research and treatment of Cancer (EORTC) to the identification of transitions within the his / her future being, even in a late stage of the QLQ-C30 instrument. RESULTS: Clinically terminal trajectory. Method: A grounded theory disease. They contain an idea of wholeness detectable symmetrical proximal muscle approach was used to initially explore this beyond the actual condition. Thus, they are in weakness developed in 8 (27%) of the 30 decision making in practice and subsequently, line with the concept of palliative care. patients studied; detectable at four weeks in six to generate a substantive theory from the data patients and eight weeks in two patients. The to explain the underlying factors which mean cumulative dose of dexamethasone at determine decision making. A sample of four Abstract number: 407 first detection of myopathy was 127mg. SNIP doctors and four nurses was selected. Data was Presentation type: Oral values declined significantly over the study collected through the use of taped semi- Poster number: period (p=0.03). The VAS and global quality of structured interviews and analysed using life scores did not significantly change. Nausea constant comparative analysis. Results: The Managing diabetes at the end of life: and vomiting (p=0.017) and appetite (p=0.01) decision making process was found to be a Current practices of doctors and nurses were the only symptoms to significantly dynamic one which was influenced by driving improve on steroids. CONCLUSIONS: This and restraining forces. The transition from Peter Hudson, Centre for Palliative Care and study demonstrated that steroid myopathy was terminal to dying phase emerged as the most School of Nursing, Melbourne, AUSTRALIA, a common side-effect of low to moderate dose significant decision to be taken and was Karen Quinn, St Vincents Health, Melbourne, steroid treatment lasting over four weeks in identified as a critical point. The recognition AUSTRALIA, Trish Dunning, St Vincents Health, patients with advanced cancer. Although a and acknowledgement of this critical point Melbourne, AUSTRALIA significant decline in respiratory muscle involved ‘Crossing the Threshold’ from active function was detected it is not possible to to palliative care. This decision making process Purpose: The incidence of both diabetes and attribute this solely to steroid myopathy from was complex and involved a struggle for both cancer is anticipated to increase. Minimal this study. Steroids have a role in symptom doctors and nurses. This decision could be empirical evidence describes or guides health control in advanced cancer, however patients deferred leading to a mixed management professional practices about diabetes must be carefully monitored to ensure that strategy and this was identified as ‘Sitting on management at the end of life. The aim of this benefits of treatment outweigh toxicity. the Fence’. The interaction between driving and research was to explore the current practices of restraining forces as influences determined the doctors and nurses who provide care to patients outcome of specific decisions. These forces were with advanced cancer and diabetes and to make identified as: Belief System, Hierarchy, recommendations for improved patient

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Abstract number: 409 Withrawal rate (w.r.) from Home care and in- antifungal drug resistance; (2) To determine Presentation type: Oral hospital activity is 75% and 50% respectively. specific risk factors for the development of Poster number: W.r. for age <35, 35–50, 50–65 is 95%, 64% and antifungal drug resistance. Methods: The 40%. W.r for primary, high school, university population studied were patients with advanced The Association Between Anemia and education is 46%, 84%, 70%. Conclusion: under cancer attending hospice day centres within the Fatigue in Palliative Care Cancer Patients 35 attendants are more likely to withdraw, as South West Region of England. Basic well as home care volunteers and highly demographic and antifungal prescribing data Tina Noergaard Munch, Palliative Care and educated ones. Selection, specific training and were recorded. Unstimulated and stimulated Rehabilitation Medicine, Houston, U. STATES, psychological supervision should be salivary flow rates were measured, and an oral Tao Zhang, The University of TX, M. D. reconsidered.. rinse was collected (for isolation of yeasts). Anderson Cancer Center, Houston, U. STATES, Isolated yeasts were identified using the Jie Willey, The University of TX, M. D. standard API method, and tested for antifungal Anderson Cancer Center, Houston, U. STATES, J. Abstract number: 411 sensitivity using the standard NCCLS method. Lynn Palmer, The University of TX, M. D. Presentation type: Oral Results: 285 patients have participated in the Anderson Cancer Center, Houston, U. STATES, Poster number: study. Resistance to polyene drugs Eduardo Bruera, The University of TX, M. D. (amphotericin, nystatin) was rare, although Anderson Cancer Center, Houston, U. STATES IMPACT OF MUSIC THERAPY IN resistance to azole drugs was common. For PALLIATIVE MEDICINE example, 24% of isolates were resistant to Fatigue has been reported associated with fluconazole, and a further 6% only sensitive to chemotherapy-induced anemia in patients with Mellar Davis, Hematology/Oncology, higher doses of fluconazole. Similar levels of advanced cancer. Correction of anemia using Cleveland, U. STATES, Lisa Gallagher, The resistance occurred to itraconazole, but lower erythropoietin has been reported to decrease Cleveland Clinic Foundation, Cleveland, U. levels of resistance occurred to ketoconazole fatigue and increase the quality of life of these STATES, Ruth L. Lagman, MD, MPH, The and voriconazole. Resistance was not related to patients. The purpose of this study was to Cleveland Clinic Foundation, Cleveland, U. previous exposure to azole drugs or to determine the association between the intensity STATES, Declan Walsh, MSc, FRCP, The antifungal drugs per se, but was associated with of anemia as determined by the hemoglobin Cleveland Clinic Foundation, Cleveland, U. colonization with non-Candida albicans species (Hgb) levels and the intensity of fatigue, STATES, Susan B. LeGrand, MD, FACP, The (27% isolates) and with salivary gland depression, anxiety, well-being in terminally ill Cleveland Clinic Foundation, Cleveland, U. dysfunction. Further clinical / microbiological cancer patients receiving palliative care. The STATES data will be presented at the meeting. charts of 177 consecutive patients seen by Discussion: The data suggest that azole drug palliative care specialists were reviewed. Background Complementary therapies are resistance is common in patients with advanced Complete information was available in 147 palliative and augment conventional treatment. cancer. Thus, health care professionals should (83%) patients. Median Hgb within 4 weeks of Music therapy as a complementary therapy has consider other treatment options in this group palliative care consultation was 11.6 g/dL (range been used to reduce anxiety and improve of patients (e.g. polyene drugs). The data also 7.5≠16.1). Eighty-two (56%) patients had Hgb quality of life. We wished to prospectively study suggest that salivary gland dysfunction may level less than 12 g/dL. 125 (85%) had Hgb level the effect of music therapy on multiple predispose to colonization with azole-resistant ≥10. Median fatigue score in patients with Hgb symptoms experienced in an inpatient palliative organisms. level ≥ 10 g/dL vs. < 0.001). Hgb did not show medicine unit. Methods A visual analog scale, a significant univariate correlation with fatigue, Happy/Sad Face Assessment tool and behavioral depression, anxiety, or well-being. In a scale were utilized as a measured outcome pre Abstract number: 413 regression analysis between the intensity of and post music therapy. Anxiety, depression, Presentation type: Oral fatigue and other clinical variables, 3 variables dyspnea, mood, pain and verbalization were Poster number: remained in the stepwise elimination analysis: assessed by both patients and families. A depression (P=0.007), albumin (P=0.008), and computerized data program was used and Respiratory effects of buprenorphine well-being (P=0.06). The overall r2 for this statistical analysis performed using the compared to fentanyl: dose–response model was 0.22. We conclude that anemia is Wilcoxon signed rank test. Results Two hundred assessments in healthy volunteers not one of the major contributors to fatigue in cancer patients participated, 59% were females, palliative care cancer patients. More research is the median age was 62 (range 24–87) years. Albert Dahan, Depratment of Anesthesiology, required to identify correlates of fatigue other Mood, pain, anxiety, depression, dyspnea and Leiden, NETHERLANDS than mood. verbalization all improved by patient assessment (P < 0.001). Mood (P < 0.001) but Long-acting opioids are important tools in the not anxiety (P = 0.50) improved by family treatment of cancer pain. When selecting one Abstract number: 410 assessment. Discussion Music therapy has a of the available compounds the analgesic Presentation type: Oral beneficial effect on multiple symptoms. This is properties as well as the safety profile of the Poster number: one of the few studies presenting data to drug needs to be considered. Among the opioid confirm the value of music therapy. Perceptions – typical side effects respiratory depression is of Follow up of volunteers activity in urban by family members were that music therapy did special importance because of the risk of fatal and rural areas of Ancona district, not improve anxiety which differed from outcome for the patient. In this study we Marches, Italy patients perceptions and should be further compared the respiratory effects of two potent explored. In the future the durability of music opioids commonly used to treat cancer pain: Giordano Galeazzi, Marco Romeo, Marco therapy benefits should be studied. A buprenorphine and fentanyl. Forty-nine Nocchi, Simonetta Rossini, Palliative Care randomized study comparing music therapy healthy volunteers participated in the protocol. Unit,Oncology Institute of Marches for with other complementary therapies would be The following doses (all doses are per 70 kg) Supportive Care, (I.O.M.), Ancona, Italy of value. were given, placebo (n = 7); buprenorphine: 50 Maurizio Bonsignori, Director of Oncology and µg (n = 5), 100 µg (n = 5), 300 µg (n = 5); Radiotherapy department, Umberto I Regional fentanyl: 75 µg (n = 5), 150 µg (n = 5), 200 µg (n Hospital, Ancona, Italy Abstract number: 412 = 5), 300 µg (n = 5) and 500 µg (n = 1). Presentation type: Oral Respiration was measured at a fixed end-tidal Background: From 1997 to 2002, 75 volunteers Poster number: PCO2 value of 7 kPa over a 7-h period. The have been trained to join IOM Palliative Care dose–response (peak respiratory depression) Unit, in both home care and in-hospital activity. Antifungal drug resistance in patients data were analyzed using the Hill equation. For A 15 volunteers education module was helded with advanced cancer fentanyl there was a dose-dependent effect on each year. Age, sex, education, previous peak ventilatory depression with short episodes volunteer experiences, neoplastic disease in Andrew Davies, Department of Palliative of apnea at the higher doses tested (> 200 µg). relatives and motivation were recorded at Medicine, Sutton, GREAT BRITAIN, Susan The data fit yielded the following parameter registration. By the end of 2004 reason of Brailsford, Dental Institute, Kings College values (median ± SE): ventilation after placebo withdrawal was investigated. Result: Overall London, London, GREAT BRITAIN, David (Emin) 20.1 ± 2.9 L/min, dose causing 50% attendants: sex F 80% (60 vs 15), mean age 42 Beighton, Dental Institute, Kings College effect (ED50) 1.5 ± 0.5 µg/kg, ? 2.0 ± 1.4; lowest (range 15– 65), previous volunteer exp 51%, London, London, GREAT BRITAIN ventilation (Emax) 0 L/min (apnea). After neoplastic disease in relatives 64%, university buprenorphine none of the subjects developed education 28% (53% high school, 19% Background: Oral candidosis is common in apnea. We observed a dose dependent effect on primary). Solidarity is motivational category patients with advanced cancer. Currently, many peak ventilatory depression which leveled off at more rapresented (49%) out of five. 55 patients are treated with azole drugs (e.g. buprenorphine doses > 100 µg. The estimated volunteers withdrawed (75%) with 13 never fluconazole). However, recent studies suggest parameter values: Emin 20.0 ± 0.8 L/min, ED50 started, 20 are still working. Study/work, lack of that azole drug resistance may be becoming 0.9 ± 0.1 µg/kg, ? 3.0 ± 0.9, Emax: 9.0 ± 0.6 motivation, family reasons represent 25%, 20%, common in patients with advanced cancer. L/min. In conclusion, our data indicate the 25% of withrawal reasons respectively. Aims: (1) To determine the prevalence of favorable behavior of buprenorphine compared

88 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

to fentanyl with respect to their effect on the team. Patients and methods: 32 patients and Abstract number: 417 ventilatory control system. Buprenorphine has their primary caregivers were asked to complete Presentation type: Oral only little impact on respiratory function with the SEIQoL-DW at admission and after 2 weeks. Poster number: ceiling effect at high dose. In contrast, fentanyl Additionally, they rated the self-perceived causes dose-dependent respiratory depression helpfulness, distress and validity of the SEIQoL- Action Research: A feasible method for with apnea at high dose. DW on 10-point visual analogue scales (VAS). service development in palliative care? The palliative care team received summarized feedback on the SEIQoL-DW for every patient Daniel Munday, Palliative Care, Coventry, Abstract number: 414 and caregiver, and was asked to rate on a VAS GREAT BRITAIN, Kashifa Mahmood, Centre for Presentation type: Oral the helpfulness of this information for their Primary Health Care Studies, University of Poster number: work. Results: 20 patients, 7 primary caregivers, Warwick, Coventry, GREAT BRITAIN, Marion and 16 team members took part in the study Coroon, Coventry Primary Care Trust, OUT-OF-HOURS PALLIATIVE CARE NEEDS (after 2 weeks: 9/4/6). The median age was 62.5 Coventry, GREAT BRITAIN, Frances Griffiths, IN THE COMMUNITY years in patients and 57.9 years in caregivers. Centre for Primary Health Care Studies, The median SEIQoL-DW index (0–100) was University of Warwick, Coventry, GREAT CHI-CHI CHEUNG LONDON, GREAT 55.9 in patients and 51.4 in caregivers (2 weeks: BRITAIN BRITAIN, CATHERINE O’DOHERTY, 54.9/61.1). The SEIQoL-DW was rated as valid BASILDON AND SOUTHEND HOSPITALS, (6.2/6.7; 2 weeks: 7.3/7.0), hardly distressing Introduction: The complex nature of ESSEX, GREAT BRITAIN (2.5/1.7; 2 weeks: 3.0/1.3) and quite helpful community palliative care makes action (5.3/4.4; 2 weeks: 6.3/4.8; 47.4% of patients had research a potentially valuable approach for Studies have shown that 50–90% of terminally a rating of 6 or more at baseline, 70% after 2 service development. By this method health ill patients wish to die at home. The focus of weeks). The palliative care team reported a professionals engage in research using a cyclical palliative care has therefore shifted towards benefit through the SEIQoL-DW feedback, process of reflection, action and evaluation to enabling patients to remain at home, if this is especially at the beginning of the palliative care explore and enhance local practice. We present their wish. Patients should be well supported treatment (admission: 5.9; 2 weeks: 4.8). All initial findings of an ongoing study in which not only during normal working hours, but also measures did not differ significantly between professionals and researchers are using this during the remaining 75% of the week (‘out-of- patients and caregivers or over time. approach to develop a palliative care service. hours’) when staffing levels are lower. Aims: Conclusion: The SEIQoL-DW appears to be a Aim: To explore the feasibility of using action This study looks at the needs of patients during helpful instrument for the palliative care team research to develop a home care nursing service the out-of-hours period, by assessing the calls to optimize the treatment at admission, i.e. at a (HCNS) provided by health care assistants made to an emergency GP (general practioner) time when the patient is not yet well-known. (HCA). Methods: The work of the HCNS in one 9 APRIL service in South Essex, England. Methods: We For the patient and the primary caregiver the year was surveyed retrospectively followed by analysed call sheets regarding terminally ill SEIQoL-DW is hardly distressing and quite key informant interviews to explore issues for patients, over a 3-month period, and helpful to a subgroup of patients. Further service improvement. Results were presented to documented when and why they called, what research should verify whether the SEIQoL-DW a focus group of relevant stakeholders to allow a action was taken, and what prescriptions were may facilitate coping processes in some patients developmental strategy to emerge. Continuous required. Results: 1.8% (132) of all calls were and primary caregivers. reflection regarding the research process was regarding patients who were terminally ill. Most made at a theoretical and practical level to SATURDAY calls were made at the weekend; only 16% of assess the feasibility of its application to these calls occurred between 2300 and 0700. Abstract number: 416 palliative care. Results: Findings revealed that 90% of calls requested either assessment, and/or Presentation type: Oral whilst the HCNS was highly valued and symptom control. 53% were managed by giving Poster number: effective, organisational deficiencies and lack of telephone advice. 15% attended the primary professional support for HCAs existed. The care centre for consultation; 25% required a Health-related quality of life in caregivers solution of employing a senior nurse as co- home visit. Nearly a quarter of calls resulted in of dying cancer patients: a comparison ordinator is currently being developed. Process secondary care input. Specialist palliative care between a specialist palliative care unit issues identified included: conflict between telephone advice was not sought for any of the and a home care setting time spent in research and service activities, cases. Nearly one third of patients required new differing time-scales for service development prescriptions. 7 patients needed controlled Dietmar Beck, Palliative care Unit, Göttingen, and research, and failure to engage HCAs drugs; 4 of these were for opioids and 3 were for GERMANY sufficiently in the project. Conclusions: Action benzodiazepines. There were no documented research may provide a robust and transparent problems in obtaining these drugs. Background: Little is known about the distress model for service development. However Conclusions: Although most calls were of caregivers while caring for dying relatives. In conflicts between service and research managed by the on-call GP, nearly 1 in 4 order to capture health-related quality of life, requirements may compromise the rigour of patients attended hospital. Anticipating crises questionnaires including the SF-12 health the method and power differentials may and communicating information with on-call survey were sent out to the families of cancer threaten its emancipatory nature. Continuous services may help to reduce this figure. Most patients who either died in the palliative care reflection and flexibility of the process are vital calls were made during waking hours at the unit at Goettingen University or in a home care to its success. weekend. Although specialist palliative care setting in the surrounding region. Results: Out advice was not utilised, we question whether a of 146 included relatives we obtained a total of visiting service at these times may help to keep 87 (60%) answers. The relatives of both Abstract number: 418 patients at home. collectives showed drastically lowered MCS-12 Presentation type: Oral scores in comparison to the normal population Poster number: (psychological quality of life: palliative unit Abstract number: 415 group: 28.1, home care group: 30.7, normal The analysis of the causes of Presentation type: Oral population: 52.3, p < 0.001) and moderately hospitalization of patients with Poster number: reduced PCS-12 scores (physical quality of life: advanced cancer palliative unit group: 43.7, home care group: The SEIQoL-DW: outcome measure and 40.9, normal population: 49.6). In the subgroup Andrzej Stachowiak, Palliative Care, Bydgoszcz, psychosocial intervention? palliative unit relatives with an average length POLAND of care of more than six hours per day showed Martin Johannes Fegg, Ludwig-Maximilians- especially low MCS-12 scores (21.6; p < 0.001). In the integrated model of palliative care University, Munich, GERMANY, Thure Kuprella, Sole caregiving relatives without support by patients with advanced cancer diseases have Interdisciplinary Center for Palliative Medicine, family or friends showed significantly lower free access to both ambulatory care and Munich, GERMANY, Maria Wasner, PCS-12 scores in both groups than relatives with stationary care. At present Sue Ryder Home in Interdisciplinary Center for Palliative Medicine, support. With the total length of care increasing Bydgoszcz take care of almost 200 patients every Munich, GERMANY, Gian Domenico Borasio, to one year, MCS-12 scores were reduced from day: 160 patients in home care, 20 patients in Interdisciplinary Center for Palliative Medicine, 41.5 to 26.8. Conclusion: The analysis of quality outpatient department and 20 patients in 24 Munich, GERMANY of life shows an extreme limitation of the beds inpatients department. Since 2000 which psychological components in both branches of is the moment of home care start we have The SEIQoL-DW (Schedule for the Evaluation of study and all subgroups, as well as a moderate noticed lower interest in long stay in the Individual Quality of Life – Direct Weighting) is reduction of physical aspects. In the subgroups inpatient department. Patients are sent to a well-known and validated quality of life a high daily length of care, lacking nursing and inpatient department mainly from home care, instrument. In this study, we investigated psychosocial support by other persons, and a palliative outpatient department and nearby whether the SEIQoL-DW may furthermore be a high cumulative total time of care correlated oncological hospital. Other hospitals sent a helpful intervention for palliative care patients, significantly with low SF-12 scores. smaller number of patients (15%) to our centre. their primary caregivers, and the palliative care The aim of the research was the quantity

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 89 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

analysis of reasons for admissions to inpatient Abstract number: 420 department. At the time of patient admissions Presentation type: Oral ward doctors established the reasons for Poster number: hospitalization taking them from the following list of causes: nursing, social, family respite, Interdisciplinary patient-discussion (ID- terminal state, clinical evaluation and symptom PD): Attempts to evaluate patient-based control. During the admissions procedure team size in a pilot study doctors could notify more than one reason for patient admissions. 435 cancer patients were Elisabeth Brassel, Palliative Care Unit, St-Gallen, included in statistical analysis from 1 January SWITZERLAND, Elke Burg, Palliative Care Unit, 2003 to 30 June 2004. The most frequent St-Gallen, SWITZERLAND, Claudia Buess, reasons for admissions were: symptom control Palliative Care Unit, St-Gallen, SWITZERLAND, of 395 (91%) pts, nursing of 238 (55%) pts and Florian Strasser, Oncology & Palliative Care, social reasons of 113 (26%) pts. Family respite Oncology/Hematology, Dept. Internal Med., was noticed in the number of 87 (20%) Cantonal Hospital, St-Gallen, SWITZERLAND patients. Terminal phase of cancer was indicated in the number of 51 (12%) patients. Objective. Active involvement of Statistical analysis showed a few reasons for multidisciplinary (MD) professionals in the which patients were admitted into the inpatient assessment and treatment of patients (pt) and department: symptom control difficult to treat proxies is a key feature of palliative care (PC) in home conditions, nursing and social needs tackling multidimensional suffering. and family respite. The less frequent reasons for Realisation of an effective forum in busy daily hospitalization was terminal phase of cancer practice and a reality of increasing pressure disease. Because of widespread access to home (personal, financial) remain challenging. care the aims of stationary care are being Prediction of the most effective team size to lay changed. Further studies of the tasks of the down the care plan for each individual pt inpatient department are necessary in the situation would improve resource allocation. integrated model of palliative care. Method. MD team members (social-, spiritual- work; nutritionist; psychology; music-, physio-, ergo-, speech-therapy; pharmacist) and others Abstract number: 419 (outpatient unit; bridge-, hospice service) Presentation type: Oral propose a pt for the weekly ID-PD (30 minutes) Poster number: at the PC unit. It is conducted when >= 2 members, in addition to physician (MD) and Centralised palliative care units in remote nurses (RN), participate. Based on standard areas: an obstacle to future home care? assessments (www.palliative-sg.ch) the pt is problem-based presented, all MD team Tom Donnem, Departement of Oncology, members contribute their considerations. The Tromsø, NORWAY, Tone Nordoy, Departement self-experience of members dealing with pt and of Oncology, University Hospital of Northern- proxies is emphasized. A concrete care plan is Norway, Tromsø, NORWAY, Marit S Jordhøy, sketched out. As outcomes participants Unit of Oncology and Palliative Care, Nordland complete: 1) visual analogue scale (VAS) of Hospital, Bodø, Bodø, NORWAY, Bente Ervik, efficiency of ID-PD to clarify the care plan; 2) Departement of Oncology, University Hospital choice of 3 professionals (of 15 possible) most of Northern-Norway, Tromsø, NORWAY helpful to collaborate with; 3) choice of all areas (24) for which the ID-PD was helpful (i.e., Background: Inpatient palliative care units at symptom control, prognosis, decision making, university hospitals serving remote and rural family, psychosocial, spiritual, grief, areas are rare. In 2003 a Palliative Medicine communication, organisation); 4) VAS of Inpatient Unit (PMIU) was established within relative importance of ID-PD compared to uni- the Cancer Department at the University professional interactions. Results. MD team Hospital of Northern Norway. The aim of this members inconsistently participate, study was to explore whether centralised predominantly due to lacking resources. The inpatients palliative care units in remote areas VAS (first 7 ID-PB) reveal a moderate estimation are necessary to provide good palliative care and (mean 3.6–6.3/10) of the efficacy of the ID-PB. whether such centralization unnecessarily keeps Choice of professionals is not (yet) evaluable, of the patients far away from their family and areas shows a wide variety. The ID-PD is home community. Methods: We retrospectively ongoing. Conclusions. This pilot study suggest reviewed our computerised database for clinical that lacking resource allocation hinders and demographic information during the first assessment of efficacy of promising ID-PD, year of PMIU service. Additionally, 100 implicating the need for external funding. consecutive inpatients from the rest of the Department of Oncology (OD) were analysed. Results: Sixty-seven patients were admitted to the PMIU during the study period. Twenty-one had more than one admission (range 1–7) and the total number of admissions was 119. Median age was 60 years (range 16–82). The main cancer diagnoses were gastrointestinal (30%), genitourinary (25%) and breast (16%). The median length of stay at the PMIU was 7 days (range 1–52). Chemotherapy or radiotherapy was administrated in 66 out of 119 admissions. Median survival of the PMIU patients was 8 weeks vs. 13 months at OD. Twenty-six (39%) patients died while at PMIU. Most patients (81%) were discharged to their home community and 42% of the patients lived more than 300 kilometres from the PMIU. Conclusion: A centralised PMIU in a remote area is beneficial in order to give advanced palliative care to selected patients, of whom many are in need of chemotherapy or radiotherapy. Despite long travel distances, centralization of advanced palliative care in remote areas seems not to inhibit these patients’ possibility to spend most of their time at home.

90 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 421 0.83 mg/ml was given to each group. Up–down (outpatients identified to have pain) & time Presentation type: Poster epidural catheter implantation for epidural taken (identification of pain to administration Poster number: P1 infusion was performed under X-ray control. of analgesia) both before and after the project Efficacy was measured according to: 1. Pain was set up. Results obtained: the number of Refractory pain–depression syndrome using visual analogue scale (VAS) and verbal patients identified to require analgesia increased treated with : case report Assessment 2. Spontaneous or induced (from 1 to 5 times a month) & the time those parestheias. Our Follow-up study was three patients waited for analgesia decreased Paulo MUNIZ, Scientific Department, Rio de months. Data were analyzed using standard significantly (from 20 to 5 minutes). Janeiro, BRAZIL, Antonio Egidio Nardi, statistical tests and p-value of <0.05 was Conclusions reached: 1. The new system did not Psychiatric Institute Federal University at Rio de considered significant. Results: T-test proved take ward staff away from inpatients 2. Janeiro, Rio de Janeiro, BRAZIL that L (Levobupivacaine) group and B Providing the service increased awareness of the (Bupivacaine) group’s patients were analgesic requirements of outpatients 3. Those It is well know that refractory chronic pain is homogeneous (t=1,46P=0,152). We Observed: L outpatients now spend significantly less time in strongly associated with anxiety and depression Group 66,6% and B Group 61,1% presented pain. symptoms in advanced cancer patients. The pain relief 80% to three months follow-up study comorbidity of pain and depression significally (VAS = 0–3). L Group 27.7% and B Group 28% dificults symptom controll and seems to create presented pain relief 60% to two months follow- Abstract number: 425 a noxious feedback mechanism in wich: up study (VAS =4–6), than controlled analgesia Presentation type: Poster uncontroled and/or chronic PAIN (leads to) > (PCA) was effected. Objective examination Poster number: P5 DEPRESSION (lower the capacity to cope with showed spontaneous or induced parestheia pain) > more PAIN (worsen) > DEPRESION > more evident in Bupivacaine group. Use of the Micro-Electronic Monitoring and so on. We call this feedback circle as Conclusions: Since B (Bupivacaina) Group’s System for the measurement of adherence Pain–Depression Syndrome. Mr RA, is a 68- Pearson factor was 0,3, analgesic effectiveness to analgesics in cancer outpatients years-old male Caucasian. At the age of 66 an Bupivacaine seemed be limitated. L advanced prostatic adenocarcinoma was (Levobupivacaine) Group did not present Wendy H. Oldenmenger, Pain Expertise Center diagnosed, and radiotherapy was initiated. Bone indesiderable Influence (factor Pearson=0.17). V0-21, Rotterdam, NETHERLANDS, Rianne de metastases were concomitantly found. The In L Group consistent analgesia came true Wit, Erasmus MC, Rotterdam, NETHERLANDS, improvement of the prostatic cancer was small withaut spontaneous or induced parestheia. Michael E. Echteld, Erasmus MC, Rotterdam, and the metastases were multiple. A mild bone NETHERLANDS, Peter A.E. Sillevis Smitt, pain was treated with paracetamol. After a year, Erasmus MC, Rotterdam, NETHERLANDS, Karin the pain worsened and tenoxicam 20 mg/day Abstract number: 423 C.D. van der Rijt, Erasmus MC, Rotterdam, 9 APRIL was added, but the pain became more severe. Presentation type: Poster NETHERLANDS We initially treated the pain with 400 mg/day of Poster number: P3 tramadol with partial response. A decision to Pain is one of the most prevalent and feared start morphine was discussed. The patient had Topical application of morphine-gel symptoms in cancer patients. Adherence for no history of mental disorder andhis family had in inflammatory mucosal and pain medication may contribute to pain relief, no history of mood or anxiety disorder.He was cutaneous lesions but is hardly studied in oncology outpatients. examined by a psychiatrist who diagnosed a Until now, no ‘gold standard’ exists for the SATURDAY major depressive episode (DSM-IV-TR) Rudolf Likar, Pain Clinic, Klagenfurt, AUSTRIA, measurement of adherence. In this study we associated with chronic pain syndrome Manuela Platzer, Pain Clinic, Klagenfurt, investigated the feasibility of a new method for (Clinical Global Impression-GGI, severity = 5). AUSTRIA, Reinhard Sittl, Pain Clinic, Erlangen, adherence measurement known as the Micro- He was prescribed with amitriptyline starting GERMANY, Christoph Stein, Dep Electronic Monitoring System (MEMS). The with 25 mg/day and increasing up to 75 Anesthesiology, Berlin, GERMANY MEMS consists of electronic circuitry that mg/day, at which dose he experienced severe registers each time the lids of medicine anticholinergic side effects and mild confusion. Aim The aim of this study was to demonstrate a containers are opened. In an ongoing study 45 Then amitriptyline was thus halted, and he was peripheral local opioid effect using case patients are being included (15 patients with prescribed with tianeptine 12.5 mg three times examples involving inflammatory mucosal and one, 15 patients with two, and 15 patients with a day. After a 2 week period he described a cutaneous lesions. Methods A 0.1% morphine three prescribed analgesics). During a four-week remarkable improvement of pain control (7?3 gel, mixed in the hospital pharmacy, was applied period in each patient the MEMS will be used on a analogue visual scale of pain), mood, several times daily to inflammatory mucosal for the measurement of adherence, which is anxiety and depressive symptoms were also lesions (oral. anogenital and in one patient to a defined as ‘taking adherence’ (% of total improved (CGI severity = 2; CGI improvement = skin ulcer). The effects and side-effects were prescribed medicines taken), ‘correct dosing’ (% 1). At 6 months follow-up he had very mild documented. Results All patients experienced a days correct number of doses taken), and pain complaints and no significant mood or significant reduction in pain with the use of ‘timing adherence’ (% prescribed doses taken anxiety symptoms. His quality of life had topical morphine gel and no side-effects were on schedule). At the moment 20 patients were improved greatly and he has also returned to seen. Conclusion Topical peripheral application evaluated, 6 patients with one analgesic, 9 many of his daily activities. of morphine gel is a simple, effective method patients with 2 analgesics and 5 patients with 3 that can be carried out by patients several times analgesics. 80% of the patients were (very) a day with few side-effects. Key Words peripheral satisfied using the MEMS, 95% had no Abstract number: 422 opioid receptor, inflammatory skin-/mucosal problems using the MEMS and 90% used only Presentation type: Poster lesions, morphine gel. medication from the MEMS containers. Mean Poster number: P2 percentages of taking adherence of patients with one, two, and three analgesics were resp. Levobupivacaine vs Bupivacaine: Abstract number: 424 98, 83, and 84%; mean percentages of correct effectiveness in Malignant Pain Presentation type: Poster dosing were resp 93, 77, and 66%; mean Poster number: P4 percentages of timing adherence were resp. 74, Francesco Amato, Terapia del Dolore, Rogliano, 55, and 44%. Final results will be presented. In ITALY, Carenzi Bruno, Ospedale civile di Meeting the Analgesic Requirements of conclusion, the measurement of adherence Cosenza, Cosenza, ITALY, Siciliano Roberto, Radiotherapy Outpatients with the MEMS seems feasible, and it provides Ospedale civile di Cosenza, Cosenza, ITALY objective and detailed information. Iain Thompson, Palliative Care, Wirral, GREAT Bupivacaine is a racemic (50:50) misture of the BRITAIN S(-)- and R(-)-enantiomers, Levobupivacaine Abstract number: 426 and Dexbupivacaine, respectively.However Object of Study: to assess the impact on the Presentation type: Poster there have been reports of cardiotoxicity and pain control of radiotherapy outpatients Poster number: P6 nervous system toxicity associated with rac- following a 12-month project. The project Bupivacine (1,2). In recent study involved placing a Controlled Drug Cupboard EXTERNAL BEAM RADIATION IN Levobupivacaine has demostrated less toxicity, in the radiotherapy-planning department METASTATIC BONE PAIN IN PALLIATIVE while retaining comparable anaesthetic and (following permission from the Home Office). PATIENTS analgesic potency (3).The aim of this study was A specialist nurse is contacted by bleep to investigate the analgesic effectiveness of (according to a rota) to check and administer Feliks Blaszczyk, Palliative Medicine Clinic, Levobupivacaine during a continous epidural the analgesia. Previously, a prescription had to Home Hospice, Wroclaw, POLAND, Barbara infusion. Method: Patients (n.39), aged mean be taken to the nearest ward by a radiographer. Winkler-Spytkowska, Radiation Therapy 67 years, 21females and 18 males,with cancer A ward nurse would then return to the planning Oncology Centre of Lower Silesia, Wroclaw, pain were randomized to receive either department with the analgesic and administer it POLAND, Renata Opalinska, Palliative Medicine Levobupivacaine 2,083mg/ml (L group), or to the patient. Method used: quantitative audit Clinic, Home Hospice, Wroclaw, POLAND, Bupivacaine 2,083mg/ml (B Group). Morphine – comparing number of analgesic episodes Katarzyn Grabarczyk, Palliative Medicine Clinic,

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 91 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Home Hospice, Wroclaw, POLAND, Anna Abstract number: 428 were given simultaneously: In TTS Fentanyl Sulkowska, Palliative Medicine Clinic, Home Presentation type: Poster group: only Durogesic – 6%, Durogesic + Hospice, Wroclaw, POLAND Poster number: P8 immediate release (i.r) mph solution – 45%, Durogesic + i.r. mph tablets – 11%, Durogesic + Introduction and Objectives: Radiation therapy The use of Tramadol as an ajuvant mph amp.– 3%, Durogesic + mph SR tbl. + i.r. is a well known and common method of in cancer related bone pain: prospective mph solution – 8%, Durogesic + mph SR tbl. – treatment of bone pain due to metastases with case series 8%, Durogesic and other analgesics – 19%. In pathological fracture risk. Material and the mph group: mph SR tbl only – 35%, mph SR Methods: 13 patients with different kinds of Andrew Dickman, Pharmacy Dept, Liverpool, tbl. + i.r. mph solution – 53%, mph in amp. – tumors and bone metastases. The ones who GREAT BRITAIN, Jenny Doherty, Willowbrook 3%,mph sol.only – 6%, mph + other analgesics – received beam radiation therapy poorly Hospice, Liverpool, GREAT BRITAIN, Anthony 3%. Conclusions: For as much as 43% of responded to opioid pain treatment previously. Thompson, Willowbrook Hospice, Liverpool, patients at the time of the study tramadol was Single radiation of 6 Gy and 8 Gy was used GREAT BRITAIN, Jenny Wiseman, Willowbrook an adequate drug for the treatment of their achieving analgesic effect. Results: Patients Hospice, Liverpool, GREAT BRITAIN, Clare pain. That supports the importance of 2nd step described pain using NRS scale: before radiation Littlewood, Willowbrook Hospice, Liverpool of WHO analgesic ladder. TTS Fentanyl and as follows: 48% – 4, 36% – 5, 12% – 3, 14% – 6, mph morphine tablets were used as strong than on 2nd day, 7th . and in 2nd . week. Background: Tramadol is a synthetic centrally opioids in the comparable amount of patients. Radiation was effective in better pain control in acting analgesic with opioid and non-opioid 64% of patients on TTS Fentanyl and 56% of all patients (60% showed 2 in NRS and 40% – properties. Tramadol has moderate affinity for patients on SR morphine tabl. needed 1). It is difficult to estimate the research because mu- and weak affininity for delta and kappa- immediate release morphine for breakthrough of small group of patients (n= 13) and subjective opioid receptors. The non-opioid properties pain. In some cases (18%) TTS Fentanyl was perception of pain. Conclusions: Single beam include increased release of serotonin and combined with SR morphine tablets. radiation therapy is a well known and common reduced pre-synaptic uptake of noradrenaline method of treatment of bone pain in palliative and serotonin. Due to its favourable side-effect patients. It turned out that single beam profile and good effect, tramadol is used Abstract number: 430 radiation is equally effective as long term commonly in postoperative pain management Presentation type: Poster radiation but more comfortable and less of orthopaedic surgery patients. Bone pain is a Poster number: P10 exhausting for patients. The research should be common problem in cancer patients and is continued with more reliable validation often difficult to manage with standard BUPRENORPHINE IN TRANSDERMAL methods. analgesic regimes including non-steroidal anti- SYSTEM IN CANCER PAIN – OUR inflammatory drugs and strong opioids. This EXPERIENCES preliminary case series intends to study the Abstract number: 427 effect of a tramadol slow release formulation as Feliks Blaszczyk, Palliative Medicine Clinic, Presentation type: Poster an add-on to maximal opioid therapy in the Home Hospice, Wroclaw, POLAND, Katarzyna Poster number: P7 treatment of cancer-related bone pain. Method: Grabarczyk, Palliative Medicine Clinic, Home Patients with cancer-related bone pain as Hospice, Wroclaw, POLAND, Adam Dziadura, Encapsulation of an intrathecal catheter diagnosed by the treating clinician, who have Palliative Medicine Clinic, Home Hospice, been titrated onto oral morphine sulphate and Wroclaw, POLAND, Aleksandra Dro, Palliative Jan Gaertner, Department of Anesthesiology, appropriate co-analgesics until dose-limiting Medicine Clinic, Home Hospice, Wroclaw, Cologne, GERMANY, Frank Elsner, Department side effects occur will be started on Tramadol SR POLAND of Palliative Care, Aachen, Lukas Radbruch, 50mg bd as an add-on if deemed appropriate by Department of Palliative Care, Aachen, Rainer the treating clinician. Breakthrough doses of Introduction and Objectives: Buprenorphine is Sabatowski, Department of Anesthesilogy, strong opioid will be allowed as needed and a low molecular weight, lipophilic, opioid Cologne, GERMANY recorded. If pain persists tramadol SR will be analgesic, available also as patch formulation increased in 48 hour intervals in steps of 50mg designed to release buprenorphine over 72- Summary: Adequate pain relief may not be bd up to a dose of 200mg bd. Endpoints are hours period. In Poland buprenorphine patches achieved with oral opioid administration in decreased dose of concurrent opioid dose, pain – Transtec – are available from the beginning of some patients with cancer pain. Spinal control and side effect profile. Pain, drowsiness 2004. Partial agonist µ-opioid receptors and an administration of opioids is an alternative for and nausea will be measured at baseline and antagonist at K – opioid receptors, some of these patients. While encapsulation is a once daily for five days with a four-point buprenorphin is 25–50 times more potent than well-known complication of long-term epidural categorical scale ranging from 0 to 3 (0=no pain, an equivalent dose of morphine. Following the morphine administration, it has not only been 1=minimal pain, 2=moderate pain, 3=severe cessation of buprenorphine therapy, withdrawal reported for intrathecal catheters. We report a pain). symptoms may occur. The peak may be reached case of an encapsulated and infected intrathecal at about 2 weeks. Buprenorphine is placed on catheter tip. The successful identification and the three-step pharmacological ladder of treatment of the infection as well as the Abstract number: 429 analgesia3. Material and methods: The subsequent intravenous pain regimen are Presentation type: Poster observation involved 10 patients (6 women and described. Case report: A 47-year old patient Poster number: P9 4 men) in range of age 50 to 82 treated of cancer with cancer pain underwent implantation of an pain with buprenorphine as TDS of dose 35 µ/h. intrathecal drug delivery device. When the Pain treatment in the palliative home care For breakthrogh pain patients were patient suffered from an infection with fever, – use of opioids administrated buprenorphine in tablets on pain on injection into the catheter and an demand. In the study side effects were also elevated number of granulocytes in the Anna Oronska, Palliative Medicine Clinic. considered. Results: At the beginning side- cerebrospinal fluid 7 weeks later, radiological Home Hospice, Wroclaw, POLAND, Slawomir effects were observed, and gone after few hours. examination showed an encapsulation of the Pawel Wozniak, Palliative Medicine Clinic. All patients experienced pain relief. Patients also catheter tip. Systemic and cerebrospinal fluid Home Hospice, Wroclaw, POLAND, Feliks described patches as easy and comfortable in concentrations of morphine and its metabolites Blaszczyk, Palliative Medicine Clinic. Home use. Observed side effects were as follows: in suggested transport of morphine into the Hospice, Wroclaw, POLAND 40% – sleepiness, 10% – worse concentration, systemic circulat ion via the vascularisation of 10% – dizziness and 10% – none. Conclusions: the encapsulating membrane. After antibiotic Introduction: Palliative Medicine Clinic (PMC) Use of buprenorphine patch system confirms its therapy and removal of the catheter, morphine and Home Hospice (HH) in Wroclaw provides efficacy and safety in cancer pain. It is also easy was administered intravenously with a one to home and ambulatory care for about 1000 and comfortable in use and exempts patient one conversion ratio resulting in adequate pain cancer patients per year. The aim of the study from remembering of taking tablets. relief. The patient died more than six months was to estimate the use of opioids in treatment after removal of the catheter. of cancer pain. Material and Method: On one day, 15th March 2004 all medical records of patients being currently under the care of PMC and HH were checked, looking at the treatment with opioids on that day. Results: 269 records were checked. The VAS score less then 5 was recorded in all patients. 24% of patients were without opioids, either without any analgesics, or taking NSAIDs or paracetamol. Opioids were taken by 76% of the patients, 43% of them were receiving tramadol, 26% morphine (mph), 28% TTS Fentanyl (Durogesic), and 3% buprenorphine tbl. Very often different opioids

92 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 431 for retrospective evaluation. OR and change of profile which will best benefit. Further Presentation type: Poster route was only considered under chronic pain assessment of Sm153 in palliative care should Poster number: P11 situations. Results: 105 patients’ histories were be include improvement of functional status reviewed, the mean age was 65.1 y and 78% and QofL parameters. Strontium 89 and samarium 153 in were men. Mean survival after diagnosis of palliative therapy of painful cancer bone cancer was 592 days. Mean time of chronic use metastases – comparison of effectiveness opioids till death or end of opioid treatment Abstract number: 434 was 69 days. Considering all patients, use of Presentation type: Poster Maciej Baczyk, Department Of Endocrinology opioids was 12% of the time of duration of Poster number: P14 and Nuclear Medicine, Poznan, POLAND, Rafal illness. 93% patients took opioids with a mean Czepczynski, Karol Marcinkowski University of 1.5 opioids/patient. Total number of opioids S- as an adjuvant analgesic: School Of Medical Sciences, Poznan, POLAND, courses were 142 (Mophine 89, Fentanyl 32, effectiveness of oral administration Robert Oleksa, Karol Marcinkowski University Methadone 21). 57% of patients were treated School Of Medical Sciences, Poznan, POLAND, with one opioid, 33% with 2 opioids and 3% Helen de Graaf-Waar, Medical Oncology, Jerzy Sowinski, Karol Marcinkowski University with 3 opioids. None opioide was needed in 7% Rotterdam, NETHERLANDS, Paul J. Lieverse, School Of Medical Sciences, Poznan, POLAND of patients. OR was indicated 63 times in 38 Erasmus MC, Rotterdam, NETHERLANDS, patients, 75% for refractory pain and 14.3% for Angelique J.E.F. de Wit, Erasmus MC, The painful cancer bone metastases are usually last days. In patients where OR was for Rotterdam, NETHERLANDS, Lia van Zuylen, detected in 60–80% of patients with advanced refractory pain, in 23 patients was for increasing Erasmus MC, Rotterdam, NETHERLANDS prostate cancer and breast cancer. The aim of tolerance without clear opioid toxicity and in this study was to evaluate the effectiveness of Sr 24 the opioid toxicity . Improvement of pain Introduction: S-ketamine (Ketanest-S®) is 89 and Sm 153 therapy in the group of prostate after OR was found in 43 (68%) patients. The increasingly popular as an adjuvant to opioids and breast cancer patients with multiple bone mean VAS before opioid rotation was 60 mm. in the treatment of cancer pain. In case reports metastases. The study included 40 prostate and after 30 mm (p<0.001, a 0.5) Conclusions: and studies it is mostly administrated cancer patients and 40 breast cancer patients a) OR is used even when opioid toxicity limits parenterally, but there are some reports about with multiple bone painful metastases detected opioid benefit, or when a quick tolerance oral administration, which is more convenient by scintigraphy and by radiogram or CT or MRI appears. b) OR is quite frequently used in the for the patient. However, advice about oral determining the type of metastases. 40 patients treatment of refractory pain in our setting, with administration varies. To determine the effect (20 with prostate and 20 with breast cancer) an overall good response. c) Prospective studies of oral treatment with S-ketamine, we evaluated received a standard dose of Sr 89; others are needed to obtain a full idea of the need and our experience since we started it in selected received a individual dose of Sm 153 (the actual benefit of OR. We are now conducting a cases. Method: Retrospectively the medical 9 APRIL random selection). For assessment of therapy prospective national multicentre study. records were studied of all patients who received effectiveness; pain relief, a reduction in S-ketamine orally since treatment started in analgesic requirements and motor activity were January 2003 (n=8). We studied both the evaluated. During follow-up after 4 and 10 Abstract number: 433 patients who received S-ketamine orally at the weeks of the end of Sr 89 therapy we noticed Presentation type: Poster start and those in whom the administration was pain relief effects as follows: “good” (VAS5) in 8 Poster number: P13 converted from parenteral to oral patients (2 with prostate and 6 with breast administration. Results: The patients were in SATURDAY cancer). During follow-up after 4 and 10 weeks Use of Samarium-153 in the relief of the palliative phase of advanced cancer and of the end of Sm 153 therapy we noticed pain cancer pain in a palliative care service: pain was managed multidisciplinary. All relief effects as follows: “good” in 16 patients (8 preliminary results. received S-ketamine adjuvant to a with prostate and 8 with breast cancer), parenteral/transdermal opioid. Four patients “moderate” in 18 patients (9 with prostate and 9 Gala Serrano-Bermudez, Palliative Care Service, received S-ketamine primarily parenteral and with breast cancer), “no effects” in 6 patients (3 L’Hospialet-BCN, SPAIN, Josep Porta-Sales, showed a good effect. S-ketamine was converted with prostate and 3 with breast cancer). We Institut Catala d’Oncologia, L’Hospialet-BCN, after 4 to 8 days into oral administration, with have observed that the analgesic requirements SPAIN, Josep Martin-Comin, Hospital good effect in 3 patients. It was also possible to decreased to 50% of dose on average. The motor Universitari Bellvitge, L’Hospitalet-BCN, SPAIN, decrease the dose of opioids, and even to stop activity of the points evaluated according to Eulalia Alburquerque-Medina, Institut Catala opioids, in one of these patients. Four patients ECOG scale and Karnofsky`s scale was much d’Oncologia, L’Hospialet-BCN, SPAIN, Xavier started with S-ketamine orally for 2 to 13 days better. We conclude that palliative therapy Gómez-Batiste, Institut Catala d’Oncologia, with no favourable effect. Administration was using radioisotopes (both Sr 89 and Sm 153) is L’Hospialet-BCN, SPAIN continued parenterally with satisfying effect in effective (80–85% “good” and “moderate” 3 patients. Conclusion: S-ketamine is a good response rate). In breast cancer bone metastases Aims: To assess the characteristics of the adjuvant to opioids in complex pain problems. (more cases with osteolytic – osteoblastic patients in whom samarium-153 (Sm153) is It seems rational to titrate the dose parenterally metastases), tendency to better results of Sm prescribed in our service and mainly its and than convert into oral administration, 153 therapy was observed. analgesic benefit. Method: We designed a which is more convenient for the patient. descriptive prospective longitudinal study, from Further prospective research is necessary. January 2003 to February 2004. Patients Abstract number: 432 enrolled were those in whom was prescribed Presentation type: Poster Sm153 in an attempt to relive bony pain due to Abstract number: 435 Poster number: P12 multiple metastasis, insufficiently relieved with Presentation type: Poster other means; drugs, radiotherapy or even Poster number: P15 Opioid rotation for the relief of refractory surgery. The reduction in analgesic pain: Assessment of prevalence and requirements was the parameter used to The incidence and measurement of pain effectiveness during global natural evaluate the analgesic response.. Sm153 was in Dutch nursing and residential homes history of cancer administered at the Service of Nuclear Medicine in an standardized way. Results: Nine patients Anneke Boerlage, Pain Expertise Center, Albert Tuca-Rodriguez, Palliative Care Service, have been enrolled, 3 of them died within the Rotterdam, NETHERLANDS, Frans Baar, Nursing L’Hospialet-BCN, SPAIN, Andres Merino, next 3 months after Sm153 treatment and there Home Antonius IJsselmonde, Rotterdam, Institut Catala d’Oncologia, L’Hospialet-BCN, were not assessable by long term pain response. NETHERLANDS, Dirk Stronks, Erasmus MC, SPAIN, Gala Serrano-Bermudez, Institut Catala Six patients were assessable; the mean age was Rotterdam, NETHERLANDS, Karin van der Rijt, d’Oncologia, L’Hospitalet-BCN, SPAIN, Jesus 61.1 y, and 2/3 were men. One third of patients Erasmus MC, Rotterdam, NETHERLANDS, Gonzalez-Barboteo, Institut Catala d’Oncologia, had breast cancer and the other two thirds Rianne de Wit, Erasmus MC, Rotterdam, L’Hospialet-BCN, SPAIN, Xavier Gómez-Batiste, prostate cancer. Before Sm153 administration NETHERLANDS Institut Catala d’Oncologia, L’Hospialet-BCN, the mean Equivalent Daily Oral Morphine Dose SPAIN (EDOMD) was 130 mg with a rescue mean Introduction The prevalence of pain among the EDOMD of 25 mg. After 15 days of Sm153 elderly is high. This study aimed to ascertain 1) Aim: To asses the need for opioid rotation (OR) injection the mean EDOMD could be reduced the prevalence of pain among residents in through the natural history of neoplasms and by 30% and the need of rescue doses were Dutch nursing and residential homes, and 2) establish the effectiveness of these procedures reduced by 10%. The mean of the analgesic the effect of the implementation of daily pain in refractory cancer pain. Method: Retrospective response was 3 months. No patient presented registration on pain intensity. Method In 3 study on patients who died consecutively in the severe (grade IV) haematological side effects. nursing homes and 1 residential home all palliative care unit from June to October 2003. Conclusions: In our initial experience Sm153 nurses were trained in pain treatment and pain OR was done under a protocol previously offers a good, early analgesic response measurement. They were also instructed to ask established. Pain in the unit was assessable both (reduction of analgesic requirements) and long the pain intensity of the residents on a daily using the VAS, and in patients out the unit, lasting. In despite of these good results, more basis using a numeric rating scale (0–10). Before using a standardized criteria previously set up experience is needed to define the patient’s the start of the program nurses’ knowledge on

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pain management was measured by a survey Abstract number: 437 admission were needed for catheter related and all residents were asked to indicate their Presentation type: Poster complication, mainly skin infections. None case pain intensity. Both measurements were Poster number: P17 was necessary to remove catheters to control the repeated 3 months after the implementation of complication. Overall evaluation of patients, daily pain registration. Results 477 residents TRANSDERMAL BUPRENORPHINE families and team was fairly good allowing participated in the study (mean age 79 years, IN CANCER PAIN – OUR DAILY caring patients at risk of potential heavy mean stay 22 months). 25% of them were CLINICAL PRACTICE complications at home. Using a close system of unable to report pain intensity. 69% of the analgesia and a careful home nursing care was residents experienced pain (mean intensity 3.9) Cialkowska-Rysz Aleksandra, Oncology most valuated by patients and nurses. of whom 58% suffered substantial pain. Of the Department Medical University of Lodz, Lodz, Conclusions: This initial experience has been residents with pain 31% were offered no pain POLAND, Leppert Wojciech, Chair and helped us to realize the feasibility of caring medication or only medication PRN. 38% of the Department of Palliative Medicine, Poznan complex patients at home, since till now residents did not mention their pain to the University of Medical Sciences, Poznan, patients like this needed long hospital nurses. Education improved the knowledge of POLAND, Kazmierczak-Lukaszewicz Sylwia admissions. nurses on pain treatment with respect to fear of Farida, Palliative Medicine Unit Oncology addiction, habituation and administration of Department Medical University of Lodz, Lodz, pain medication. After implementing pain POLAND, Misiewicz Bozena, Palliative Care and Abstract number: 439 registration the percentage of residents suffering Radiotherapy Department Copernicus Hospital Presentation type: Poster substantial pain decreased from 58 % to 49%. in Lodz, Lodz, POLAND, Dukowicz Andrzej, Poster number: P19 Conclusion Pain is a major problem in residents Palliative Care and Radiotherapy Department of nursing and residential homes. Educating Copernicus Hospital in Lodz, Lodz, POLAND A PILOT STUDY TO DEVELOP A nurses and implementing pain registration BEDSIDE PAIN DOCUMENTATION increases knowledge of pain treatment and Buprenorphine is a well-tolerated strong CHART AND ESTABLISHING THE decreases the percentage of residents suffering analgesic opioid. Buprenorphine as sublingual EFFICACY OF THE CHART substantial pain. Pain registration is a useful tablets have been used for many years in the tool in improving pain control in these homes. treatment of strong tumor as well as non–tumor Katherine Clark, Palliative Care, Sydney, pain. A few years ago Buprenorphine AUSTRALIA, Paul Glare, Royal Prince Alfred TDS–patches are also available for patients with Hospital, Sydney, AUSTRALIA, Martin Stockler, Abstract number: 436 neoplasmatic pain. Aim: The aim of the Royal Prince Alfred Hopsital, Sydney, Presentation type: Poster research is to evaluate the effectiveness of AUSTRALIA, Emily Sung, Royal Prince Alfred Poster number: P16 Transdermal Buprenorphine in patients with Hospital, Sydney, AUSTRALIA, Judi Greaves, neoplasmatic pain and to gain clinical practice. Royal Prince Alfred Hopsital, Sydney, LOCALLY ADMINISTERED OPIOIDS – Materials and Methods: The study comprised 24 AUSTRALIA CLINICAL PRACTICE patients with neoplasmatic pain (13 women and 11 men aged 44–87 years). Time of Background: Cancer pain a problem in Aleksandra Cialkowska-Rysz, Oncology treatment: 30–210 days. Buprenorphine Australia, despite guidelines indicating that Department Medical University of Lodz, Lodz, TDS–patches were applied (35 µg/h – 105 µg/h). documentation may improve pain POLAND, Wojciech Leppert, Chair and Patients with incidental pain were additionally management, boosting staff & patient Department of Palliative Medicine, Poznan given intakes of Paracetamol, Tramadol, and satisfaction. Little evidence exists that pain University of Medical Sciences, Poznan, sublingual Buprenorphine. Additional scores improve. In our institution, pain scores POLAND, Sylwia Farida Kazmierczak- Paracetamol, Tramadol, and sublingual aren’t documented so a study was undertaken Lukaszewicz, Palliative Medicine Unit Oncology Buprenorphine intake were allowed. As to: 1. Develop an acceptable bedside pain Department Medical University of Lodz, Lodz, adjuvant therapy the patients received steroids, documentation chart 2. Assess the efficacy of POLAND, Grazyna Samczewska, Department of NSAID, bisphosphonates. Results: Distinct the chart to improve pain scores Methods: A Applied Pharmacy Medical University of Lodz, analgesic effects were observed in 85% of collaborative approach was used to devise a pain Lodz, POLAND, Marian Mikolaj Zgoda, patients, 67% of them required no additional chart. Cancer patients with pain are identified Department of Applied Pharmacy Medical doses. Anti-constipation therapy was needed in on admission & asked to complete a Brief Pain University of Lodz, Lodz, POLAND 30% of patients. One person has symptoms of Inventory (BPI), calculate the Pain Management skin allergy. No side effects were observed in Index & commence the pain chart. During the The opioid receptors located on the peripheral patients who received higher-dose patches. day, numeric pain scores are regularly recorded. sensory nerves are responsible for an analgesic Conclusions: The application of Transtec TDS After 7 days or when discharged the BPI & PMI effect after a local administration of patches has given a good control of are repeated plus questions regarding preparations containing opioids. For the last 4 neoplasmatic pain. Transtec TDS patches were satisfaction with pain control. Results: 96 years, our clinical centre has carried out the well-tolerated in spite of the doses. patients have so far been identified with study research of locally administered preparations ongoing. 53% not enrolled as they were too containing morphine in the treatment of unwell, had language barriers, were cognitively painful malignant skin and mucosa ulcerations. Abstract number: 438 impaired, declined interviews or were pain free Materials and methods: The preparations Presentation type: Poster when approached. 44 patients recruited with 15 containing morphine were produced at the Poster number: P18 patients completing all questionnaires. Non- Department of Applied Pharmacy of the completion has been due to oversight at Medical University of Lodz. hydrogels and Nursing experience of caring patients discharge, not wishing to answer more ointments – 0,2% morphine sulphate hydrogels with advanced cancer at home with questions, becoming too unwell or dying. The and ointments – 0,225% morphine spinal analgesia: preliminary experience 15 all have advanced cancers. Initial pain scores hydrochloride hydrogels and ointments – were greater than 6/10 in 9 patients. On placebo Two independent observations have Esther Corrales-Baz, Palliative Care Service, completion, 9 had improved their scores, 3 had been carried out: – observation 1 – 32 patients – L’Hospitalet-BCN, SPAIN, Imma Lopez, Institut worsened & 3 unchanged. Regardless, 14 observation 2 – 35 patients (placebo) Results: Catala d’Oncologia, L’Hospitalet-BCN, SPAIN, expressed satisfaction with their pain control & Analgesic effect was observed in 30–100% of the Eulalia Alburquerque-Medina, Institut Catala 15 expressed satisfactions with the staff’s patients (medium – 71,08%) Placebo effect d’Oncologia, L’Hospitalet-BCN, SPAIN, Maria approach to analgesic management. observed in 32,6% of the patients. Application Antonia Serna, Institut Catala d’Oncologia, Conclusion: Preliminary results suggest that frequency: 1 to 3 times a day. Conclusions: L’Hospitalet-BCN, SPAIN visible pain documentation is efficacious in Locally administered preparations containing improving pain scores & ensuring patient morphine produce significant analgesia. The Aim: Describe our experience in the satisfaction with analgesic management in a effect of morphine is considerably stronger in management of far advanced cancer patients at cancer unit. Review of the completed pain comparison to placebo. Preparations are well- home with spinal analgesia. Method: We charts indicate they are well done suggesting tolerated. No side effects observed. enrolled patients with the diagnosis of staff acceptability to the intervention. The study advanced cancer, cared for our palliative service is ongoing. wearing a catheter for spinal analgesia. We collect data related with the complications and specific nursing care. Results: From March to September 2004, 4 patients were enrolled, 3 (75%) were men. It have been placed 5 catheters 3 intradural and 2 epidural. Mean follow up at home were 59.3 days (20–120 days). Pain relief in all cases was very good (VAS < 4) allowing a high degree of autonomy for the Daily Life Activities (Mean Barthel of 85). Three hospital

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Abstract number: 440 metoclopramide as prophylaxis of nausea and PAT is a useful help for nurses to systematically Presentation type: Poster vomiting. Results: Time of treatment 1 – 687 register the complaints and effects of pain. It is Poster number: P20 (mean 35) days, daily doses 50 – 900 (mean suitable for adult patients without cognitional 325) mg, 25 patients exceeded 600 mg. Good disorders. The national PAT is ready for Multicentre descriptive and longitudinal analgesia (VAS < 4) in 826 (75%) patients: in 774 introduction in The Netherlands. study on opioid rotation (OR) or changes (88%) with moderate, in 52 (23%) with severe of route administration in advanced pain, partial effect (VAS 4–5) in 143 (13%): in 79 cancer patients: preliminary results (9%) with moderate, in 64 (29%) with severe Abstract number: 443 pain, unsatisfactory analgesia (VAS > 5) in 132 Presentation type: Poster Jesus Gonzalez-Barboteo, Palliative Care Service, (12%): in 26 (3%) with moderate and in 106 Poster number: P23 L’Hospitalet-BCN, SPAIN, Gala Serrano- (48%) with severe pain. Good analgesia in 76% Bermudez, Institut Catala d’oncologia, patients with visceral, 65% with somatic and P.A.I.N. Quality – Outcome-related L’Hospitalet-BCN, SPAIN, Amalia Palacio, 54% with neuropathic pain. Side effects: pain management Hospital Universitario Virgen Rocio, Sevilla, constipation 242 (22%), nausea 165 (15%), SPAIN, Felipe Calvo, Hospital Universitario drowsiness 66 (6%) and sweating 33 (3%) Dirk Vermeij, Quality assessment, Draguignan, Gregorio Marañon, Madrid, SPAIN, Vicente patients. Cessation of tramadol in 58 (5.3%) FRANCE Alverola, Hospital Clinico, Valencia, SPAIN patients because of side effects, respiratory depression not observed. In 567 (51.5%) Chronic pain is a major European healthcare Aim: To know the natural history of the use of patients unsatisfactory analgesia caused problem. Appropriate pain management is still opioids in far advanced cancer, the effectiveness substitution tramadol with strong opioid after not available to the majority of patients. of OR and the causes to do it. Method: We mean 35 days. Conclusions: 1. Tramadol Concerted action could lead to improvement. designed a descriptive, longitudinal and administered by different routes (oral, Objective of the P.A.I.N. Initiative is to elaborate multicenter study, enrolling advanced cancer subcutaneous, rectal) is an effective analgesic in outcome-orientated concepts for a continuous patients from their first visit in a Palliative Care , the treatment of cancer pain of moderate quality improvement in routine clinical practice. Medical Oncology or Radio-Oncology Services intensity. 2. The efficacy of tramadol is highest P.A.I.N. methodology is based on a Plan-Do- and followed up till 6 months. We record any in visceral pain. 3. The tolerance of the Check-Act (TQM) circle. ‘Evidence based’ switch of opioid, considering or change of treatment is good, provided prophylactic use of guidelines are often ignored and felt to be not route, cause of OR, and its effectiveness using antiemetics and gradual dose increments. 4. relevant for routine practice. As a consequence VRS (0–10) at day 0 and 7. Evaluation was done 51.5% of patients after mean time 35 days need experience based ‘educated guesses have been even by phone or visit in the clinic. Time substitution of tramadol with strong opioid made to describe and compare the ideal and the lasting till new change was also recorded. because of unsatisfactory analgesia. real conditions, based on measurable indicators, 9 APRIL Results: From June to September 2004, 60 having threshold values, usable to indicate patients have been enrolled, 36 (60%) were men designated measures, suitable to realise desired In 34 (56,6%) patients opioids were started and Abstract number: 442 results. These results will be re-evaluated, what in 26 (43,3%) OR initially were done, with 40 Presentation type: Poster could lead to changes in practice. Prerequisite is OR. Mean 1.5 OR per patient. Starting opioid in Poster number: P22 an instrument for a valid documentation. naïve patients were: Fentanyl (15), P.A.I.N. Quality is a new computerised Buprenorphine (6), Tramadol (6), Morphine THE DEVELOPMENT AND documentation programme for routine use. It SATURDAY (5), Methadone (2). In OR opioid used to switch IMPLEMENTATION OF A PAIN offers a continuous clinical assessment by were: Morphine (20), Buprenorphine (9), ASSESSMENT TOOL comparing the documented proceedings with Fentanyl (5), Tramadol (3) , Methadone (2) , pre-defined standards. Evaluation of patient’s Oxicodone (1), Codeine(1). Principal cause of Chris Terwiel, Pain department, Arnhem, risk factors, warning function, clinical guidance OR was pain un relieved. Mean Daily Equivalent NETHERLANDS, Sylvia Verhage, Hospital Jeroen and monitoring of case related efficiency and Oral Morphine (DEOM) before OR was 99.9 mg Bosch, Herthogenbosch, NETHERLANDS, Jaap effectiveness. A cross-sectional analysis of local and first day after OR 90.8mg (p=0.897). DEOM Gootjes, Hospice Kuria, Amsterdam, settings is also offered. The indication specific between day 1 and 7 were 90.8 mg and 116.5, NETHERLANDS, Rianne de Wit, Erasmus MC, outcomes of relevant patient sub-groups, respectively (p=0.019) . After 7 days of OR, basal Rotterdam, NETHERLANDS, Wendy separated by socio-demographic factors, risk VRS were reduced 2 or more points in the 65% Oldenmenger, Erasmus MC, Rotterdam, factors and measures are evaluated to identify of ORs, in the case of breakthrough pain NETHERLANDS internal process or structure related deficits. To reduction was found in 42.4% and in the identify best practice statistical key data from average of both pains reduction was in 57.5%. Introduction: Measurement of pain intensity, equivalent medical service providers are In 63.2% of OR in which pain was well relived by means of a Numeric Rating Scale, is more compared in an anonymous external ranking DEOM was increased and in 52.6% was and more used on a daily basis in hospitals and (Benchmark). By publishing this reality based unchanged (p=0.511). Change of route was home care. In case of moderate to severe pain, data it is intended to produce a learning done 9 times. Conclusions: We show the the various multidimensional aspects of pain environment, able to guarantee a continuous preliminary results of this study. This project is should be evaluated and used for providing quality improvement on the level of doctor’s the continuation of a retrospective study made adequate pain treatment. To register the effects consultation hour, as well as on the level of the in our service about OR. Initial result seem to and side-effects of pain we use a pain national healthcare system. P.A.I.N. Quality is indicate that effectiveness of OR is related with assessment tool (PAT) in The Netherlands. therefore addressed to specialised pain clinics, the switch opioid in it self rather than the Many institutions developed their own PAT, pain interested professionals and healthcare change of the opioid dose. more than sixty different ones were being used. officials. When the LVP (National Nursing Pain Network Group), an organization of professional nurses, Abstract number: 441 dedicated to promote and provide optimal care Abstract number: 444 Presentation type: Poster of individuals with pain, was set up in 2001, a Presentation type: Poster Poster number: P21 working-group was formed with a view to Poster number: P24 develop one national PAT that can be THE ROLE OF TRAMADOL IN THE transmitted to several working-areas. Methods: Continuous sc infusion of Ketamine as an TREATMENT OF CANCER PAIN – RESULTS All the different PAT’s were collected and adjuvant analgesic in difficult to control OF 10 YEARS OF CLINICAL EXPERIENCE evaluated. This national multidimensional PAT cancer pain has been developed by using the PES-structure Wojciech Leppert, Chair and Department of (Problem Aetiology Signs and Symptoms). It Nikolay Yordanov, Palliative Care and Pain Palliative Medicine, Poznan, POLAND contains fourteen questions, such as pain Control, Vratsa, BULGARIA duration, quality of pain, what increases and Aim of the study: Assessment of analgesia and decreases pain. By putting these questions to 18 patients with poor pain control because of side effects of tramadol immediate (drops and the patient an image is formed of the kind and dose connected intolerable opioide side effects capsules 50 mg, ampoules 50 and 100 mg, extends of the pain. This new PAT was evaluated were treated by CSCI of Ketamine as an suppositories 100 mg) and controlled release in 148 patients, in 9 hospitals 1 nursing home adjuvant analgesic. All patients had more than (100, 150, 200 mg tablets) in cancer pain. and 2 institutions for home care and in one pain: neuropathic pain 18 patients, Patients and Methods: 1101 patients (879 different patient-categories. Results: 95% of the 12/66%/ had more than one neuropathic pain, moderate, 222 severe) with visceral, somatic 21 nurses who filled in the evaluation form, somatic pain – 13/72%/, visceral pain – (bone) and neuropathic cancer pain. 1035 said that the questions in PAT are clear, 85% 10/55%/. All patients had pain score patients received tramadol orally (75 controlled that the questions are simple to fill in, 100% VAS>80mm and BRS –6 >5 and performance release tablets, 960 immediate release drops or that the manual was clear, 95% that there are score PPSv2=42%. All were converted from oral capsules), 51 subcutaneously, and 15 rectally. no unnecessary questions and 100% said that to CSCI of morphine = 3:1/the dose of the CSCI Initial doses 12.5–50 mg, then titrated, usually they get a good image of the pain in patients was fixed and remained the same through the by 50% increments. 1036 patients received daily life. Conclusions: The multidimensional time of treatment/ + sc rescue doses /fixed mg/ +

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 95 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

CSCI of Ketamine 1mg/kg/24h. The pain data on an number of 763 patients, assisted Abstract number: 448 intensity, patients’ satisfaction, the number of during 2003. Results affirm that in a the 80% of Presentation type: Poster rescue doses, the daily amount of morphine the cases it has been applied an ‘antalgic Poster number: P28 and the side effects were followed and therapy’; it has been given oral morphine and evaluated. The dose of Ketamine was raised with transdermic fentanyl in 258 cases and both Collaboration in Pain Control – no more than 75mg/24h up to 500mg/24h. The have been used in 116 cases. It has been It’s good to talk results: There is significant reduction of pain analysed 1059 daily medical survey, score VAS before – 8.93 to VAS –2.11 BRS – 6 highlighting the presence of two opioids in the F Twomey, Aintree Palliative Care Team,, from –5.55 to 1.55. Satisfaction was = 3.5 / 0 – therapy; more exactly oral morphine in 537 Liverpool, GREAT BRITAIN, TP Nash, The (not at all) 5 (max)/. The mean opioide survey and transdermic fentanyl in 483; only in Walton Centre for Neurology and Neurosurgery, consumption reduced from 282.22mg/24h to the 3% of the cases the supply has been Liverpool, GREAT BRITAIN, GD Corcoran, 226.11 / 21.5%/.The numbers of rescue doses interrupted for uncontrollable side effects. That University Hospital Aintree, Liverpool, GREAT per person reduced from 7.3 the first day to 1.7 is really important underlining how the BRITAIN in the last day. The side effects observed in 7 morphine use has been useful, especially in /38%/ were: bad sleep – 4 /22.2%/, cases of strong pain (testified by 170 daily Aim This study was undertaken to assess the hallucinations – 5 /27.7%/. confusion –2 medical survey) Setting: It has been carried out outcomes of regular discussion of Palliative Care /11.1%/, delirium – 2 /11.1%/, redness of the researches on the data given by a palliative care patients with difficult pain problems by a injection site – 4 /22.2%/, infiltrate – 2 /11.1%/ organization who acts in the homecare of Specialist Palliative Care Team and a visiting and sterile abscess – 1 /5.55%/ 4 patients advanced oncological patients. Conclusions: Consultant in Pain Medicine. Methods A /22.5%/ had more than one side effect and 3 The use of these two drugs and the low detailed log of 25 meetings that took place over /16.66%/had only one. 1 patient /5.5%/ get no presence of side effects affirm that the an 8-month period was maintained. Relevant pain reduction. The severity of the side effects subministration and the patients compliance information regarding all patients discussed was was 1.96/0-no – 6 max/. 1 patient stopped are really efficient for the invalids treatment in collected. These patients were hospital treatment because of the side effects. 1 patient homecare. inpatients, day hospice or outpatient attendees PPSv2=40% deteriorated so the whole treatment of our service. Results 71 discussions were held was stopped, she died after 40 hours. regarding 32 patients, 56% female, mean age Conclusion: CSCI of Ketamine is relatively safe, Abstract number: 447 61yrs. 81% were inpatients, 94% had a opioide preserving procedure, allowing good Presentation type: Poster malignancy, with the GI Tract and lung disease pain control in cancer patients. Poster number: P27 predominant and 45% were discussed on multiple occasions. 59% had nocioceptive pain ELECTROPHONOPHORESIS – due to primary or recurrent disease, distant or Abstract number: 445 ADMINISTRATION IN bone metastases, 23% had neuropathic pain Presentation type: Poster LONG-STANDING PAIN only and 19% had mixed pain. In all cases Poster number: P25 advice was given regarding drug therapy and M. Szymkowiak, Regionalny Zespól Opieki specific non-drug advice was given in 10. 31/32 Endoscopic sphenopalatine ganglion Paliatywnej, Bydgoszcz, POLAND, A. patients reported having less pain, requiring (SPG) block for head and neck cancer pain Stachowiak, Regionalny Zespól Opieki lower doses of fewer analgesic medications Paliatywnej, Dom Sue Ryder w Bydgoszczy, and/or were able to go home. 12/32(38%) of the Bipin Varghese, Surgical Oncology (Head and Bydgoszcz, POLAND, Magda Nicpon, patients underwent 15 anaesthetic pain control Neck), Trivandrum, INDIA, Cherian Koshy, Regionalny Zespól Opieki Paliatywnej, Dom Sue procedures: epidural catheterisation(4), coeliac Regional Cancer Centre, Trivandrum, INDIA, Ryder w Bydgoszczy, Bydgoszcz, POLAND plexus neurolysis(3), epidural phenol Renju Kuriakose, Regional Cancer Centre, instillation(2) or percutaneous cordotomy(2). Trivandrum, INDIA, Paul Sebastian, Regional If the pain is situated on a small area of the skin 92% had significant analgesic benefit from their Cnacer Centre, Trivandrum, INDIA and the tissues that are close to this area, the procedure. 55% of all patients died during the systemathic pharmacotherapy is usually study and mean survival following first The analgesic efficacy of sphenopalatine ineffective. Toxicity of human body organs and anaesthetic intervention was 45 days. ganglion(SPG) block although well many side effects are the serious barrier to Conclusions Our study emphasises the vital role documented is yet to receive wide application. applying this method of traetment, especially of a Pain Specialist in the management of the Several techniques are in vogue for the block during long-term treatment with high doses of difficult pain problems we regularly meet in our the most recent one being the transnasal medicine. The physiotherapeutic methods of work. We stress the importance of patient access endoscopic approach. Although surface blocks therapeutic menagment like ultrasounds and to the opinion of a specialist pain service and of SPG with local anesthetics have been studied ionotherapy are commonly used in applying found that although only 38% underwent a transnasal infiltration of anesthetic agents is yet analgetics (mainly in non-neoplastic long- formal anaesthetic procedure, all 32 patients to be popularized. The authors present their standing pain). Therapeutic value of these benefited from combined review. updated series of endoscopic infitration of 2% methods is the subject of interest in reference to lignocaine and 6% phenol (neurolytic agent) possibilities of modulation the receptor pain. for patients with advanced malignancies of the Such methods like ultrasounds and continues or Abstract number: 449 head and neck region whose pain was not faradic current make the penetration of mdicine Presentation type: Poster adequately controlled with conventional by the undamage skin easier. The aim of this Poster number: P29 medications including oral morphine. SPG paper was to evaluate the effectiveness of block is effective in alleviating pain due to analgetics using Lignocainum hydrochloricum CLINICAL PHARMACOLOGY OF advanced head and neck cancers. Nasal 1%, Diclofenac sodium gel 10% and 3% of HYDROMORPHONE HCL EXTENDED- endoscopy is a valuable adjunct to accurately morphine gel with the help of RELEASE (HHER) CAPSULES q24h localize the sphenopalatine ganglion. The block electrophonophoresis. The research involved FOLLOWING MULTIPLE-DOSE ORAL is relatively safe and can be usefully carried out eight patients from Sue Ryder House in ADMINISTRATION as an office procedure. Bydgoszcz that suffer from long-standing pain. The pain was both neoplastic and non-neoplastic V Vashi, Department of Clinical Pharmacology, and it was localized on a small area and difficult Stamford, U. STATES, A Cipriano, Purdue Abstract number: 446 to control with medicines given systemicaly and Pharma LP, Stamford, U. STATES, S Harris, Presentation type: Poster localy. The medicines were passed in the form of Purdue Pharma LP, Stamford, U. STATES, D Wu, Poster number: P26 gel. They were given according to the instruction Purdue Pharma LP, Stamford, U. STATES, A El- for ‘Sonoter’ machine that characteristics are Tahtawy, Purdue Pharma LP, Stamford, U. PROMPT RELEASE OF ORAL MORPHINE constant current and the special head used to STATES USE AND TRNSDERMIC FENTANYL, USED electrophonophoresis with the frequency of FOR ADVANCED ONCOLOGICAL PATIENTS 1MHz. The procedures had been made for four Once-daily (q24 h) HHER (Palladone XL in U.K.; TREATMENT, DURING THE INDUCTION days. Six patients treated with this method Hydal UNO Retard in Austria) capsules have PHASE AND BREAKTROUGH PAIN reached the soothing of pain. The best effects been developed in strengths of 12, 16, 24 and were reached among the patients with the pain 32 mg to simplify and ease the frequent Leonardo Terzoli, Palliative Care Unit, Rome, connected with degenerative joint disease and administration of immediate release ITALY, Arianna Lombardi, Antea Palliative Care osteolytic metastasis. The lack of effects was hydromorphone (HHIR) needed to maintain Unit, Rome, ITALY, Andrea Pierangeli, Antea noticed with zoster neuralgic pain. Small group analgesia. A multiple-dose, crossover study was Palliative Care Unit, Rome, ITALY, Giuseppe of patients heated with electrophonophoresis did conducted in healthy volunteers. One HHER 12 Casale, Antea palliative care Unit, Rome, ITALY not allow us for making any conclusions. Further mg capsule was administered q24h for five days reserch made on a bigger group of patients are while HHIR was administered q6h for 5 days. Goals: Demonstrating their use practicalness in needed to check the effectiveness of the Steady-state pharmacokinetics (PK) and safety homecare and the patients’ compliance. described method. following HHER and HHIR dosing were Methods and Materials: It has been analysed determined. Plasma concentrations were

96 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

assessed pre-dose (trough values) on days 1 Abstract number: 451 subcutaneous Morphine and the stabilization of through 5 while full PK profiles were obtained Presentation type: Poster the Fentanyl. Conclusions: 1. More than the on day 5 for 24 hours following HHER and Poster number: P31 half of the patients they consume analgesics of HHIR dosing. Plasma concentrations of the third step. 2. The Metamizol and the hydromorphone were determined using a LC- TENS as adjuvant for pain relief in Tramadol are, undoubtedly, most used in her MS/MS assay. Safety including vitals, laboratory palliative care corresponding step. 3. The Fentanyl and adverse events were monitored during the transdermal places secondly after the Morphine study. PK and statistical methods were then Jacob Van Den Broek Amsterdam, subcutaneous and ahead of the Oral Morphine. applied to the resultant plasma data. Steady- NETHERLANDS, Jaap Gootjes, hospice kuria, state was achieved within 2 to 3 days following Amsterdam, NETHERLANDS, Wouter initiation of HHER oral dosing. Plasma Zuurmond, hospice kuria, Amsterdam, Abstract number: 453 concentration profiles on day 5 were NETHERLANDS, Corry van Tol – Verhagen, Presentation type: Poster characterized by a much flatter profile for the hospice kuria, Amsterdam, NETHERLANDS, Poster number: P33 q24 h HHER compared to the q6 h HHIR Roberto Perez, Dept. Anesthesiology Vrije product, steady-state fluctuation was ~200% Universiteit Medical Centre, Amsterdam, Drug prescription for pain control in the lower for HHER than with HHIR. The total daily NETHERLANDS last 3 months of life in general practice exposure (AUC) of HHER and HHIR formulations were equivalent based on equal Introduction. 70% of all terminal ill patients Sander Borgsteede, EMGO/ Public Health, daily doses. The plasma concentration profile of suffer from moderate to severe pain. Pain Amsterdam, NETHERLANDS, L Deliens, VU HHER, resulted in steady-state Cmax which was treatment is often difficult in terminally ill Medical Centre, Amsterdam, NETHERLANDS, lower, tmax occurring later, and steady-state patients, especially in case of neuropatic pain. AL Francke, NIVEL, Utrecht, NETHERLANDS, G Cmin that was higher for the HHER product The effect of the use of Transcutaneous Electric Van der Wal, VUmc, Amsterdam, compared to HHIR. HHER did not accumulate Nerve Stimulation (TENS) as adjuvant treatment NETHERLANDS, JThM Van Eijk, University of significantly following once-daily in pain relief may be a simple and often Maastricht, Maastricht, NETHERLANDS administration. Adverse events noted in the forgotten method. The purpose of this study study were mild in severity with the overall was to evaluate retrospectively the efficacy of Introduction In the Netherlands, the general incidence of nausea and dizziness less in the TENS in terminally ill patients in hospice Kuria. practitioner (GP) has a central role in providing HHER group. Methods. In cancer patients suffering from palliative home care. Drugs are an important myofascial and neuropathic pain in the hospice tool for pain control in end-of-life. In this paper Kuria the physiotherapist or trained nurse we explore drug prescribing during the last 3 Abstract number: 450 applied TENS and explained the procedure. months of life. Method Of all patients who 9 APRIL Presentation type: Poster During two years 71 patients received TENS as died, ATC-coded prescriptions were divided Poster number: P30 adjuvant treatment. The nurses continued to according to the three steps in the WHO give regular instructions. If possible, the analgesic ladder. Drugs were analysed over the MORPHINE HYDROCHLORIDE 0,1% IN patients apply TENS by themselves or with help total period of the last 3 months and in 3 time POLYETHYLENE-OLEOGEL FOR of relatives. Results. All the patients gave their frames of 2 weeks. Results Almost all patients IMPROVED TOPICAL ACTION comments on the use of TENS. 51 (70%) (97%) were prescribed at least one drug, with a Patients expressed some beneficial activity and mean of 25 prescriptions per patient. Most SATURDAY Wilhelm Freiherr von Hornstein, Abteilung continued to use it as long as possible. The prescriptions were for the nervous system Schmerztherapie Klinik für Tumorbiologie, patients were content, that they could do (21,6%), mostly opioids and psycholeptics. Of Freiburg, GERMANY, Christa Häfner, KTB an der something themselves to achieve better pain all prescribed pain medication, WHO-step 1 Albert-Ludwigs-Universität Freiburg, Freiburg, control. Conclusion The use of TENS in (paracetamol/NSAIDs) took 61% 8–9 weeks, GERMANY, Martina Bitto, KTB an der Albert- terminally ill cancer patients is a useful 56% 5–4 weeks and 27% 2 weeks before death. Ludwigs-Universität Freiburg, Freiburg, adjuvant for pain relief in palliative care. For step 2 (weak opioids) the proportions were GERMANY, Regina Frommherz-Sonntag, KTB rescpectively, 20%, 11% and 9%. The an der Albert-Ludwigs-Universität Freiburg, proportions of step 3 (strong opioids) were 19%, Freiburg, GERMANY, Nicole Neumann, Abstract number: 452 33% and 64%. The total number of prescribed Klinikumsapotheke Universitätsklinikum Presentation type: Poster drugs increased in time and most drugs were Freiburg, Freiburg, GERMANY Poster number: P32 prescribed for cancer patients. Conclusion Almost all patients are prescribed drugs near Lesions and ulcerations of the mucosa and the EVOLUTION AND CONSUMPTION end of life. Two months before death GPs skin can be very painfull. The treatment of OF ANALGESICS IN A UNIT OF prescribe mostly drugs from step 1 of the WHO those painful alterations tends to be quite PALLIATIVE CARE analgesic ladder. In the last two weeks before difficult. Systemic painkillers especially opioids death the total number of prescriptions and the often induce doselimiting side-effects without Frederic Gili, Palliative Care, L’Hospitalet de proportion of strong opioids increased, achieving sufficient pain relief. Since the Llobregat, SPAIN indicating more and stronger pain near end-of- sixteenth century ayurvedic physicians life. The low proportion of drugs from step 2 successfully use topical preparations containing Introduction: The Unit of Palliative Care was indicates that either GPs move quickly from for inflammatory conditions. In Europe inaugurated in December 2000. It consists of 15 step 2 to step 3 or that they skip 2 totally. William Heberden described in 1774 the use of beds and after 3 years of functioning it seems to an opium paste to treat haemorrhoids. In the us to be interesting to know the evolution of the 1980 opioid receptors were discovered in consumption of analgesics and his distribution. Abstract number: 454 various peripheral tissues. These peripheral Objective: To know the consumption and Presentation type: Poster receptors are normaly inactive and must be distribution of the analgesic medicaments in Poster number: P34 activated by inflammation. The inflammatory the Unit of Palliative Care and the evolution process seems to be essential so that topical throughout these three years. Method: There The effectiveness of as an opioids may develop a local action. There are an are analyzed the analgesics consumed by all the adjuvant analgesic for cancer pain increasing number of reports on the topical use patients deposited during the period of morphine. Since August 2002 we have started understood between January 1, 2001 and Hidenori Takahashi, Pain medicine and using topical morphine as a 0,1% aqueous gel. December 31, 2003. Results: During this period Palliative care, Tokyo, JAPAN, Naohito While having quite good pain relief for a certain 657 patients have entered, with an index of Shimoyama, National Cancer Center Hospital, time a number of patients complained about occupation of 92.4, one average stay of 20.2 and Tokyo, JAPAN local burning, too brief an action and choking one index of mortality of 72.4. The when used oraly. So we looked for alternative consumption of analgesics in the year 2003 Objectives: We retrospectively investigated our preparations. The most promissing at the distributes of the following way: 12.6% of the experiences with amoxapine, a tricyclic moment seems to be morphine hydrochloride patients uses analgesics of the first step, 27.2% antidepressant (TCA), to determine whether it is 0,1% in a POLYETHYLENE-OLEOGEL of the second one and 60.2% of the patients of reasonable to be tested in future trials as an (GELATUM BASALIS HYDROPHOBICUM, the third one. Of the first step 87% of the adjuvant analgesic for difficult cancer pain. hydrophobes Basisgel DAC). So far we have consumption corresponds to the Metamizol, of Background: TCAs are commonly used in treated over fifty patients. The main advantages the second step 98 % to the Tramadol and of cancer patients as adjuvant analgesics, especially seem to be: very rapid onset of action (seconds the third one 45% to the Morphine for cancer pain with neuropathic components. to minutes), no local burning, prolonged action subcutaneous, 29% to the Fentanyl These practices are based on the evidence that because of better local adhesion, protective film transdermal, 21% to the Sulfate of retarded TCAs are beneficial in a number of non-cancer covering the wound. This simple mixture of Morphine and 5 % to the Sulfate of Morphine neuropathic pain syndromes. However, very few morphine and polyethylene-oleogel is easily of immediate liberation. The evolution clinical trials have specifically evaluated the done by the pharmacist. throughout these three years has been the efficacy of TCAs for cancer pain. It is also decrease of Tramadol’s use, the increase of important to consider the balance between

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 97 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

analgesic effects and adverse effects related to Abstract number: 456 was stable over the same period, indicating the use of TCAs with opioids because of overlap Presentation type: Poster patients did not rely on increased HHIR rescue of similar side-effects. Amoxapine is a TCA that Poster number: P36 or HHER doses to maintain stable pain control. has a lower frequency of side effects and has an Once-a-day, extended-release hydromorphone earlier onset of action for depression than other Conversion from Previous Opioids to provides effective, consistent pain control at TCAs. There is no report of the use of Extended-Release Oral Hydromorphone stable doses, with low rescue use across a 7-day amoxapine as an adjuvant analgesic for cancer Hydrochloride treatment period. pain. Methods: We retrospectively reviewed all patients who had amoxapine prescribed as an MA Kwarcinski, Medical Services Department, adjuvant analgesic to opioid treatment for Stamford, CT, U. STATES, M Shi, Purdue Pharma Abstract number: 458 cancer pain with neuropathic components from L.P., Stamford, CT, U. STATES, BJ Buckley, Presentation type: Poster January 2003 to August 2004. Results: Among Purdue Pharma L.P., Stamford, CT, U. STATES Poster number: P38 24 patients identified in this term, 14 patients (58%) reported their pain relief within 3 days The optimal schedule of opioid administration ATC (Around-The-Clock) Extended Release (Median=1.9 days). There were only 2 patients provides pain control with a minimal number Delivery System (8%) who stopped its use because of the of daily doses. The efficacy of a once-daily, possibility of adverse effects. Conclusion: extended-release hydromorphone B Moehring, Medical Services Department, Amoxapine has a favorable side effect profile hydrochloride (HHER) capsule (Palladone® XL Stamford, CT, U. STATES, M Kwarcinski, Purdue and the onset of the analgesic effect seems to Capsules, UK) was evaluated in patients who Pharma L.P., Stamford, CT, U. STATES, B Oshlak, occur within a few days. Based on these results, were switched from previous opioid regimens Purdue Pharma L.P., Stamford, CT, U. STATES we will conduct a prospective trial to establish using a 8:1 conversion ratio of oral morphine to evidence for the effectiveness of amoxapine as oral hydromorphone. 344 patients with Extended and controlled-release dosage forms adjuvant analgesics for cancer pain. persistent moderate to severe pain due to cancer can add many advantages to already existing (79%) or nonmalignant causes were enrolled in drug products by simplifying the either of two identically designed studies with administration regimen. This simplification can Abstract number: 455 an initial open-label conversion and titration subsequently enhance patient compliance, Presentation type: Poster phase followed by a double-blind phase. Eligible decrease administration costs, and improve Poster number: P35 patients had been treated with single entity drug efficacy, adverse event profiles, and quality and/or fixed combination opioids at a total of life. The around-the-clock (ATC) delivery Long-Term Efficacy and daily dose equivalent to at least 90 mg oral system is the extended-release drug delivery Safety of Once-Daily Oral morphine. During the open-label phase, the system used for the delivery of hydromorphone Extended-Release Hydromorphone previous opioid dose was converted to an hydrochloride in Palladone® XL Capsules, (UK). dose of oral morphine, and the This unique delivery system is unlike older MA Kwarcinski, Medical Services Department, starting dose of HHER was then calculated at extended-release systems that have been on the Stamford, CT, U. STATES, R Swanton, Purdue 1/8 of the morphine total daily dose using market. The ATC delivery system enables pain Pharma L.P., Stamford, CT, U. STATES, BJ standard dose conversion factors. The efficacy patients to receive continuous opioid therapy Buckley, Purdue Pharma L.P., Stamford, CT, U. of the conversion dose was evaluated using with less frequent medication dosing than with STATES mean average pain intensity (API) (pain scale 0 = immediate-release dosage forms. This poster no pain; 10 = pain as bad as you can imagine) at will present a description of the ATC delivery Long-term administration of oral extended- 48 hours compared to baseline. 333 patients system used in Palladone® XL Capsules, how it release hydromorphone (HHER) capsules (e.g. had complete data. Following conversion mean works, and supportive efficacy data for the Palladone® XL Capsules, UK) was assessed in (± SD) API scores at 48 hours remained within 1 recommended every 24 h dosing interval. 143 patients with cancer-related pain who had point of baseline, decreasing from 5.3 ± 2.13 at participated in either of 2 previous double-blind baseline to 4.6 ± 2.16 at 48 hours. Relatively active-controlled studies of HHER. Patients unchanged pain scores were observed regardless Abstract number: 459 received open-label once-daily HHER for up to 8 of previous opioid or pain type. Results suggest Presentation type: Poster weeks in this extension study. Supplemental patients can be effectively switched from Poster number: P39 analgesic (immediate-release hydromorphone previous opioid regimens to a once-daily [HHIR]) was available pm for pain hydromorphone capsule using an 8:1 ratio or Extended-Release Hydromorphone exacerbations. The HHER dose could be titrated oral morphine to oral hydromorphone to Administration Every 24 Hours Q24–48 hours. Average weekly pain intensity, calculate the conversion dose. in the Elderly measured on a 0–10 numeric rating scale, total daily doses (mg) of HHER and HHIR, number of B Moehring, Medical Services Department, doses of HHIR, number of patients titrating the Abstract number: 457 Stamford, CT, U. STATES, B Buckley, Purdue HHER dose and adverse events were the efficacy Presentation type: Poster Pharma L.P., Stamford, CT, U. STATES, Y Xia, and safety variables. Efficacy measurements Poster number: P37 Purdue Pharma L.P., Stamford, CT, U. STATES, R remained relatively stable over the entire 8-week Reder, Purdue Pharma L.P., Stamford, CT, U. treatment period. The mean (± SE) weekly pain Assessment of Once-Daily Extended STATES intensity was 2.9 ± 0.16 at baseline, 3.1 ± 0.16 in Release Hydromorphone (Palladone® XL the 1st week and 3.0 ± 0.18 in the 8th week of Capsules) With 7-Days Treatment At Hydromorphone hydrochloride extended- treatment. The mean (± SE) daily dose of HHER Stable Doses release (HHER) capsule (e.g. Palladone® XL was 36.2 ± 2.10 mg at baseline, 36.8 ± 2.12 mg Capsules, UK) is a new oral analgesic for once- in the 1st week and 43.6 ± 4.33 mg in the 8th B Moehring, Medical Services Department, daily dosing. Two randomized controlled week of treatment. The HHER dose increased in Stamford, CT, U. STATES, M Woodson, studies assessed the efficacy and safety of HHER 48 patients (34%) while 88 patients (62%) Hematology Oncology Consultants, St. Louis, compared with immediate-release required no titration, and 7 patients reduced MO, U. STATES, J Stambaugh, Oncology and hydromorphone (HHIR). Two randomized, their dose during 8 weeks of treatment. The Hematology Associates, Woodbury, NJ, U. double-blind, crossover studies with identical average daily dose of HHIR was 10.4 ± 1.35 mg STATES, P Lacouture, Purdue Pharma L.P., designs compared HHER administered q24h (mean ± SE) in the 1st week and 11.1 ± 2.01 mg Stamford, CT, U. STATES, S Rosen, Purdue and HHIR administered qid to patients with in the 8th week of treatment, while the mean (± Pharma L.P., Stamford, CT, U. STATES persistent moderate to severe pain. Previous SE) number of doses of HHIR per day was 1.5 ± opioid analgesics were converted to HHER and 0.12 in the 1st week and 1.3 ± 0.13 in the 8th The efficacy of extended-release the doses titrated for up to 21 days to stable pain week of treatment. Common adverse events hydromorphone (HHER) capsules (e.g. control as determined by average pain intensity were opioid-related side effects: somnolence, Palladone® XL Capsules, UK) dosed QD and (API) scores 65 years, and elderly patients constipation, nausea, vomiting, and dizziness. immediate-release hydromorphone (HHIR) receiving HHER and HHIR, except for vomiting Conclusions: Once-daily HHER provided doses QID for 7 days was studied in 344 patients which occurred almost 3 times more frequently sustained effective pain control, with tolerable with chronic moderate to severe pain treated in patients administered HHIR first. HHER adverse events, over 8 weeks of treatment in with opioids. Patients were titrated with HHER dosed q24h provided comparable pain control patients with cancer pain. and were randomized in a crossover design to to HHIR dosed qid in the elderly. HHER was treatment with HHER or HHIR. HHIR 3 mg associated with less vomiting. rescue was used throughout. Results showed no statistically significant treatment differences in mean pain intensity across the 7-day treatment period (range, 2.5 ± 0.2 and 2.7 ± 0.2 for HHER vs. 2.4 ± 0.3 and 2.6 ± 0.3 for HHIR). Control of pain was sustained, with no fluctuations observed from day to day. Mean daily rescue use

98 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 460 involves options and in order to do this, HIV necessary to investigate the efficacy and safety Presentation type: Poster infected children will need to be aware of the of using transdermal buprenorphine with Poster number: P40 extent of their disease. At the beginning of the children. study only 27% of children knew the diagnosis. Continuous infraclavicular brachial Started with 2001 we included 98 infected plexus block in the pain relief at cervical children in the process of telling. We applied Abstract number: 463 metastatic breast cancer (A case report art-therapy methods, emotional self- Presentation type: Poster about in-patient and home care) identification and experiential techniques, Poster number: P43 systemic therapy. The child’s parents many Boris Hait, Dept. of Anästhesiology and times assume the worst and their is often a Pain assessment in selected neoplasms Palliative Care, Unna, GERMANY, H.W. Schulze, reluctance to give information about illness. in children Katharinen-Hospital Unna, Unna Although parents are reluctant to fully disclose the child’s HIV diagnosis, they may partially Eleonora Mess, Department of Nursing 48 years old woman with breast cancer and disclose by giving information about HIV, Palliative Care, Wroclaw, POLAND, Wojciech metastatic infiltration in the scalenus and without naming it. Conclusions:After disclosure Leppert, Chair of Palliative Medicine, Poznan, supraclavicular region complained of severe the psychological profile of HIV adolescent POLAND, Slawomir Pawel Wozniak, Palliative pain, resistant to therapy and typical for represented acceptance, a better social Medicine Clinic and Home Hospice, Wroclaw, plexopathy with allodynia. We extended the accommodation and powerful group POLAND opioid medication (75 µg/d durogesic and oral identification. Very important issue after morphine on need) with methadone (5 to 30 disclosure was the attitude towards clinical Introduction: Understanding of pain is not mg/d), metamizol and NSAIR, amitryptiline 150 process, which was better, and the adherence possible without historical perspective mg/d, carbamazepine 1200 mg/d, and compliance to ARV, which improved. Most containing the development of pain research dexamethasone and bisphosphonates – without parents found it a positive experience and gave and pain patomechanism. In order to get to efficacy. So we chose the plexus block. Because them the chance to think about things they subjective patient’s experience, some of local changes in the interscalene groove the would not have done. The acquired results characteristics of pain should be confirmed: only possibility was infraclavicular approach. A confirmed the opportunity and necessity of localization, intensity, duration, character and CT-controlled puncture was performed, finding disclosure. Children are capable to cope with causes. Aims of the study: Assessment of pain in the plexus from the typical point. As we wanted multiple loss involved by a sever diagnosis, children with concomitant evaluation of to achieve the analgesia and sympathetic block before to install the final symptoms of AIDS. anxiety level as a state and trait. Material: The also in upper regions, the needle was advanced study was performed in 30 children aged 5–18 cranially, as well as a catheter (3 cm cephalad who were treated in the Ward of Marrow 9 APRIL under the clavicula), which was tunnelled 3 cm Abstract number: 462 Transplantation. Methods: Pain Descriptive in the caudal direction. Continuous application Presentation type: Poster Scale, Pain Point Scale, Visual Analogue Scale, of ropivacain 0,15%–5 ml/h succeded a Poster number: P42 Table of Recording Pain and Tension, STAS complete pain relief. Opioids were reduced (25 Scale, Pain Stress Scale, a Questionnaire ‘How µg/d fentanyl and 10 mg/d methadone). The Transdermal Buprenorphine for do you feel’ Spielberger C. D. Results: ● During patient stayed more than 1,5 months at home. Pain Treatment in Ten-year-old Girl the course of cancer nearly all children Four weeks after she had left our clinic the pain with Neuroblastoma experience pain, which can be caused by the SATURDAY intensity insreased, so we raised the rate and disease, invasive medical procedures, treatment concentration of the ropivacain (8–10 ml/h Christine Schiessl, Department of and negative psychological sensations induced 0,31–0,325%). Finally, a new admission to the Anaesthesiology, Erlangen, GERMANY, Chara by anxiety which exacerbates pain. ● Over 1/2 hospital was necessary because of a new kind of Gravou, Paediatric Oncology, Erlangen, of surveyed children depicts pain as sharp and pain in other regions. Summary. 1. Continuous GERMANY, Jan Beck, Paediatric Oncology, wavy, these terms were not influenced by sex plexus brachialis block allowed in our case to Erlangen, GERMANY, Norbert Griessinger, and age of a child. ● Over 2/3 surveyed children achieve the complete pain relief for a long Department of Anaesthesiology, Erlangen, qualify pain as severe. Pain is exacerbated in the period of time. 2. In a case if the interscalene GERMANY, Reinahrd Sittl, Department of afternoon and in the evening. ● In qualifying block is impossible to carry out, the Anaesthesiology, Erlangen, GERMANY localization of pain children most often infraclavicular approach seems to be a good indicate places connected with pain induced by alternative. Advancing the catheter in a cranial Introduction: A ten-year-old girl was to receive cancer and invasive procedures. ● Assessment direction provides an extended block including outpatient palliative treatment for a stage IV of pain is in the middle limits ● 3rd step and upper regions. 3. The CT-controlled puncture neuroblastoma. She had already been treated in severe pain ● 4th step, according to six steps allowed us to find sure the plexus und position the pain clinic for three years during her Pain Descriptive Scale. Conclusions: Pain the needle adapted to the situation. This was in chemotherapy, cancer irradiation and antibody Perception and anxiety level are similar and our case (because of metastatic infiltration) of therapy. Case report: After cancer irradiation of independent of age. In 63% of surveyed great benefit. 4. Tunnel fixation of catheter the head, the patient was presented to the children the level of anxiety as a state was very provided fixed placing, so that the pain outpatient department with continuous sharp high. The high level of anxiety as trait was management at home was optimal. pain in the lower left jaw and in both of her legs determined by feelings that children identify (NRS 6–8). Oral medication was no longer with. Among prevailing feelings classified in 6 possible, due to dysphagia caused by an spheres, percentage advantage was observed in Abstract number: 461 irradiation mucositis. An intravenous access the sphere of negative personal emotions Presentation type: Poster wasn’t accountable and a Hickman catheter or (57%), low self-esteem (57%) and emotions Poster number: P41 rectal administration were refused by the connected with school (37%), which indicates patient. Treatment started with a quarter of a for dependency of anxiety. Disclosure of diagnosis to HIV children Transtec® 35 µg/h patch (transdermal and adolescents-foundation for effective buprenorphine) providing satisfactory pain palliative care relief down to NRS 2–3. In the course of five Abstract number: 464 weeks the dosage was raised gradually to a full Presentation type: Poster Sorin Petrea, Head of the Sunflower Day Clinic Transtec® 70 µg/h. During this time no side- Poster number: P44 for HIV Children, Bucharest, ROMANIA, Chirila effects were reported. The adhesion of the patch Odette, The Institute of Infectious Diseases, was so good, that the girl was even able to bath. Palliative care for children with a Bucharest, ROMANIA However she considered removal of the patch non-malignant disease every three and a half days to be unpleasant. Background:A specific trend for Romania is the With the deterioration of her illness, she Conny M Molenkamp, Universiteit Maastricht, maintenance of a high number of paediatric complained of severe leg pains and increasing Maastricht, The Netherlands, Jan P.H. Hamers, cases (7797) and an increase in vertical headaches (NRS 6–8). Hence she agreed to an Health Care Studies, Nursing Science, transmission. In our Day Clinic we have implantation of a Hickman catheter. The Universiteit Maastricht, Maastricht, The registered 985 cases, 610 of them being active treatment was continued intravenously with a Netherlands, Annemie Courtens, Health Care cases and the mean age is 14 years old. PCA pump for ten weeks until she passed on Studies, Nursing Science, Universiteit Disclosure of diagnosis is not a priority when (medication: , midazolam, Maastricht, Maastricht, The Netherlands life expectancy is poor. With ARV therapy, most ketamine, amitriptyline and dexamethasone). of children should al least reach adolescence Her ailment was complicated by an acute In 2002 a quick scan (Molenkamp, et al, 2002) and adulthood, so it has become much more Herpes zoster infection. The girl died peacefully was carried out to provide information on the pressing issue. Method:The disclosure of at home, on her out-patient treatment. needs and availability of palliative care services diagnosis is a very sensitive moment for Conclusion: Transdermal buprenorphine is for children in the Netherlands. A broad children living with HIV/AIDS. Emotional another option when treating cancer pain in spectrum of services is available from home problems and psychological distress associated children. The patch can be divided, providing care to children’s hospices. The needs of parents this process of telling. A good palliative care an excellent dose titration. Yet more studies are are diverse, from personal attention to 24 hours

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availability of care. During the quick scan most diseases. The findings will be presented at the very common in all forms of dementia parents interviewed had a child died of cancer. conference. The results of our study have been especially in early stages. REIKI is an ancient The question is if their needs differ from submitted to the City Public Health Minister in system of energy healing which utilizes parents of children with non-malignant order to make some positive decisions on universal life force energy to assist the natural diseases. palliative care promotion, including palliative healing process; it unlocks the inner flow of The aim of this study is: care for the elderly people. After that we vital KI energy, works in harmony with ● To get insight in the needs and problems of managed to organize the first home palliative medicines and medical procedures, is safe as it children with a non-malignant life- care team in our city. The comparative analysis cannot be used to manipulate or control. More threatening illness and their parents during of the quality of medical and social care for the than 50% of all patients in nursing homes the phase of palliative care. elderly in this district before and after the suffer from dementia – most of them have ● To propose possible solutions to improve beginning of the team’s work is the subject for Alzheimer’s disease in different stages. palliative care for the children and their further investigation. Restlessness is a worrying condition in these parents. patients, sometimes preventing proper nursing care and disturbing relatives and inmates. Method Abstract number: 466 Sedation is often required to calm down the In-depth interviews are conducted with Presentation type: Poster afflicted. An alternative can be REIKI treatment bereaved parents of children with a non- Poster number: P46 – beginning once daily up to twice a week by a malignant life-threatening illness. The REIKI practitioner (preferably a trained nurse). interviews are analysed following the method of Barriers to geriatric continuing and In our exsperience with old people even with grounded theory. palliative care senile dementia REIKI leads to deep relaxation without sedative drugs and promotes trust and Results Anne Mergam, Geriatrics, embourg, BELGIUM, human warmth. Patients feel accepted and Data collection is still ongoing. The results of Nadia Withofs, Centre Hospitalier Peltzer La looked after. It is possible to reach these patients this study will be compared with the results Tourelle, Verviers, BELGIUM, Thierry Pepersack, on their level of living and do without sedative from the quick scan (Molenkamp, et al., 2002). Université Libre de Bruxelles, Bruxelles, drugs. It is still to early to present hard data but Final results will be available in February 2005. BELGIUM we are confident to report about our results within the next two years. Conclusions Palliative care (PC) represents good medical During the presentation the results of the quick practice for all clinicians and should not be scan and the final results of this project will be restricted to oncology patients. Their still exist Abstract number: 468 presented. These results will provide many barriers to good PC in general and in Presentation type: Poster information on the needs for palliative care geriatrics in particular. The present study aimed Poster number: P48 services for children. Recommendations to to identify these barriers. During the six improve the quality of palliative care and for months study period, patients hospitalized in a A Regulatory Perspective on the additional research will also be made. Belgian geriatric hospital and benefiting from Management of Dying and Death in Care PC were compared to those who died without Homes for Older People Reference PC. Out of 229 patients hospitalized, 20 died Molenkamp, C.M., H. Huijer Abu Saad & J.P.H. Hamers (8.7%), 9 of whom had not benefited from PC Katherine Froggatt, School of Nursing and (2002). Palliatieve zorg voor kinderen in Nederland. (45% of the deceased) . Compared to the 23 Midwifery, Sheffield, GREAT BRITAIN, Sheila Zorgbehoeften, zorgaanbod en knelpunten: een ‘quick scan’(Palliative care for children in the Netherlands. Needs, patients who had received PC, these patients Payne, University of SHeffield, Sheffield, GREAT care and problems: a quick scan). Maastricht, Universiteit showed less often pain (11% vs 73%) and more BRITAIN Maastricht. often dyspnea (66% vs 30%) as main symptom. There were no differences in age (87±8 vs 84±7 Background: Care homes provide a home for years), social status, co-morbidity, level of older people to live in until they die. Regulatory Abstract number: 465 autonomy (as measured by the Katz scale) nor frameworks, such as the National Minimum Presentation type: Poster nutritional status (as assessed by prealbumin Standards (Department of Health 2000) in the Poster number: P45 levels). Antibiotics were used in all patients who England and Wales, shape the provision of care died without access to PC and in 61% of PC in care homes, to ensure quality care. Although Evaluation of Palliative Care for patients. Analgesics, sedatives and anxiolytics there is increased interest in meeting the needs the Elderly were used less frequently compared to PC of people dying in care homes, little attention patients. In patients who died without PC, has been paid to the role of inspection and Elena Vvedenskaya, Gerontology and Family communication with the patient and regulation in the management of death and Medicine, Nizhny Movgorod, RUSSIA, Irina communication with the family was scored dying in care homes. Aim: In this paper the way Vvedenskaya, Nizhny Novgorod State Medical much lower than in PC patients. The former dying and death are constructed in regulatory Academy, Nizhny Novgorod, RUSSIA, Irina group showed more often cognitive policy and by inspectors is presented. Methods: Kudryavtseva, Regional Clinical Hospital, impairment, social isolation, and a more rapid, A discourse analysis was undertaken of the Nizhny Novgorod, RUSSIA unanticipated death. There were more advance Standard 11, ‘Dying and Death’, and its twelve directives (both from family and health-care sub-clauses. In addition, the Standard 11 section Nizhny Novgorod region is one of the five areas, workers) in the PC group. In our geriatric from the inspections, undertaken in 2003, for where demographic aging level is among the hospital, nearly half of the patients died 273 care homes in one English county, were highest in Russia. Our sociological research was without access to good PC. A comparison with analysed. Content analysis was undertaken to carried out by a method of interview of the patients who did benefit from PC in the same explore the relative importance of the different terminally ill persons 60 years and over, living time-period permitted to identify the following aspects of the Standard within the inspection in Nizhny Novgorod. The purpose of risk factors : absence of pain syndrome (real or reports. The language used by the inspectors interrogation was to study the need of the missed); presence of dyspnea (cardiac or was also examined to explore the underlying elderly in palliative care and the kinds and pneumologic in origin), cognitive dysfunction discourses held by the inspectors, concerning amount of care, which they really receive. Our and an unexpected death. More efforts should dying and death. Findings: Within regulatory questionnaire has been made on the base of the be made to recognize and implement PC as a policy Standard 11 is a representation of a questionnaire developed in Russian Academy of fundamental concept in the management of ill ‘good’ death. The elements outlined in the Sciences Institute of Sociology on the and frail hospitalized elderly. Standard indicate how this ‘good’ death can be international sample. The interrogation was achieved. The process of inspection brings to carried out at patients’ homes and in the the fore certain aspects of the dying and death outpatient medico-social department of a city Abstract number: 467 process for older people and the staff that care polyclinic. It contains questions on medical and Presentation type: Poster for them, for example the control of pain. These hospital care, nursing care, social services Poster number: P47 elements will be identified and explored provision and symptom control, patients’ further. Factors that shape the inspectors’ satisfaction with his or her communications REIKI and Alzheimer’s disease in practice will also be outlined. Conclusions: The with a doctor and a nurse, availability of Nursing Homes inspection process influences care provision in different services and the need to pay for care homes. Understanding how dying and investigations and medical interventions which Gustav Herincs, Palliative Care, Wien, AUSTRIA, death is constructed in regulations, and by must be made free of charge. Besides we Jutta Füzi Eisenstadt, AUSTRIA inspectors, will inform initiatives seeking to examined the availability of strong opioids and develop good care for older people dying in care other essential drugs for cancer patients. Introduction: Alzheimer’s disease is a form of homes. Quantitative data were analysed using SPSS- presenile dementia. It is characterised by program. The data received reflect the general memory failure for recent events and lack of unsatisfactory condition of palliative care spontaneous activity and initiative. Loss of services for the elderly with life threatening spatial orientation is common. Restlessness is

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Abstract number: 469 weeks with good liver and kidney efficiency dwelling persons more than 65 years of age fall Presentation type: Poster were examined: We used following methods of annually, while as much as two thirds of those Poster number: P49 examination: 1. Cognitive functions: memory living in residential care facilities and nursing tests, attention, exhaust test, comprehensive homes fall each year. Between 20% and 50% of Palliative care for elderly people: assessing test. 2. Psychomotoric functions: reaction time. those who fall suffer injuries that reduce the quality 3. Laboratory blood and urine sample test of Mf mobility and independence and increase risk of and metabolites (Mf-6glucoronide and Mf 3- death. Falling is caused by interacting factors. A Bart Van den Eynden, Chair of Palliative Care, glucoronide). 4. General state: ESAS scale (used history of falls, co-morbidity, impaired vision University of Antwerp, Antwerp, BELGIUM, every day). The examinations 1, 2, 3, were and cognition, use of multiple medications, Sandra Vertongen, Nursing Home, Edegem, performed before therapy and after two days of muscle weakness, balance problems, fear of Antwerp, BELGIUM, Myriam Claus, Nursing good analgesic effect. 5. Demographic and falling and environmental hazards are all risk Home, Edegem, Antwerp, BELGIUM, Annick social characteristic – structural interview. This factors for falls. Successful interventions Vanderoost, Centre for Palliative Care, Antwerp, study is now continued. All data will be directed towards high risk groups have been BELGIUM, Paul Van Royen, Centre for General analyzed using the statistic program described. These are individual and Practice, University of Antwerp, Antwerp, STATISTICA PL. We expect to achieve utilitarian multifaceted and include medical review, BELGIUM goals of our study: 1) application for chosen training of muscle strength and balance, and study techniques to estimate the ability of civil modification of environmental hazards. A Introduction: Palliative care for geriatric law activity for patients aged 65 or older in newly published observational study with patients is not systematically inventorized, terminal state treated with Morphine 2) making palliative care patients in hospices found that studied and evaluated on its quality. The the most information relating Mf impact on falls occurred almost four times as often as in literature is rather scarce. This study wants to cognitive function efficiency in terminally ill nursing homes. Cognitive impairments, low answer the question what the problems are patients aged 65 or more. blood pressure, age over 80 and visual caregivers are confronted with in caring for impairments were risk factors for falling. The palliative residents of the nursing home results indicate that falls and subsequent Immaculata. Methodology: Using data found in Abstract number: 471 injuries also may be a problem in palliative the literature a questionnaire was constructed. Presentation type: Poster medicine. Knowledge gained through fall This questionnaire tries to draught a picture of Poster number: P51 studies and clinical practice with older people the manner in which people living in a nursing may be applied to understand and investigate home pass their terminal phase. The Providing palliative medicine in seniors risk of falling, and to design interventions questionnaire is filled in by caregivers homes and dement outpatients aimed at preventing falls and fall related injuries supporting and surrounding a resident: in palliative care patients. The paper discusses 9 APRIL physical, emotional, social and existential Matthias Passon, Pain & Palliative medicine, how knowledge from research and clinical factors and aspects are mentioned and Berlin, GERMANY guidelines for fall prevention in older people requested. At the latest one week after decease of can be applied in palliative medicine. a resident the questionnaire is presented to the Palliative medicine, originally developed to care caring team by the head nurse and filled in for cancer-patients, has taken great success during a team meeting. Results: One hundred because of it’s holistic approach and it’s concept Abstract number: 473 thirty one patients could be evaluated. A of integrating special knowledge of various Presentation type: Poster SATURDAY quantitative analysis was not simple. medical disciplines and of course because of it’s Poster number: P53 Nevertheless a number of data concerning age, teambased, multiprofessional organisation, as sex, diagnosis, duration of the terminal phase, described by WHO definition. Because of it’s Biography Management: an assessment of the frequency of different symptoms as well as open concept structure special competence in the quality of life as a measure for the the evolution of the functional status and of the managing difficult situations palliative quality of care of elder people with cancer quality of life, could be derived. These figures medicine becomes more and more interesting are compared with a small pilot-research of for various other specialties as for instance Bart Van den Eynden, Chair of Palliative forty patients in the past, focusing on residents geriatric patients. Spreading it’s work field into Medecine,University of Antwerp, Mortsel, suffering from advanced cancer. Conclusions: geriatrics can cause trouble for the carer because BELGIUM, Sandra Vertongen, RVT Immaculata, The problems the team in a nursing home special competence needs to be developed, for Edegem, BELGIUM, Claus Myriam, RVT caring for palliative patients encounters, are instance to cope with the pain problem in Immaculata, Edegem, BELGIUM, Annick mainly situated in the field of dement patients. There is very little knowledge Vanderoost, Centre for Palliative Care Gasthuis (interprofessional) communication and about pain diagnosis in dement patients, who Sint-Camillus, Antwerp, BELGIUM, Paul Van relationships. General practitioners play a key are not able to communicate adequately. So it Royen, University of Antwerp, Antwerp, role which they not always fill in on a might become very difficult to distinguish BELGIUM constructive and creative way. Strong and weak between anxiety and pain. Disturbances in points will be explained. sensitation und orientation might alter the Introduction: Many people life for years in their body image also, leading to the trial-and- nursing home, most of them being frail and success-method rather than rational reasoning. chronically ill, some of them also suffering of Abstract number: 470 Therefore special skills in describing und cancer. A goal-oriented approach (Mold) allows Presentation type: Poster communicating the patients state of health patients to reach their individual goals, adding Poster number: P50 have to be developed and combined with the maximum of desired and attainable quality managing and ethical implications. of life. In the Biography Management model, An effect of morphine on cognitive Based on his work with the Berlin home-care- information about the resident is collected in a function in terminally ill patients in the project the author will describe his experiences core booklet and presented in the circle of elderly – Preliminary report in “translating” palliative medicine to dement management, which contains the necessaries, geriatric patients and to develop pathways for the corresponding domains of life and the Krystyna de Walden-Galuszko, Department of rational reasoning together with their carers. quantity of services the elder person needs. Palliative Medicine,, Gdansk, POLAND, Research question: Does the Biography Aleksandra Modlinska, Medical University Management model deliver a contribution to Gdansk, Gdansk, POLAND, Tomasz Buss, Abstract number: 472 the evaluation and the adjustment of elder Medical University Gdansk, Gdansk, POLAND, Presentation type: Poster people with cancer, living in a nursing home? Janecki Marcin, Silesian Medical Academy, Poster number: P52 Methodology: This research focus on residents Katowice, POLAND, Pyszkowska Jadwiga, suffering from cancer. A careful registration Silesian Medical Academy, Katowice, POLAND Prevention of falls and fall-related made a quantitative analysis possible. The injuries – A challenge for researchers made also an in-depth study of the Despite of common use of morphine and palliative medicine? dossier of a number of cases and of the tramadol in medicine, the knowledge about its observational data from the multidisciplinary pharmacokinetic characteristics and side effects Jorunn L. Helbostad, Section of Geriatric meetings of the caring team. Results: The is still insufficient There is few information Medicine/Dept. of Neuromed., Trondheim overall quality of life of people with cancer, about the effect of morphine and tramadol on Stein Kaasa, Norwegian University for Science living in a nursing home, ameliorated human cognitive function in the elderly. The and Technology, Trondheim, NORWAY, Olav significantly. Implementing the Biography aim of the study is to determine the effect of Sletvold, Norwegian University for Science and Management model has many advantages: the morphine commonly used as analgesic Technology, Trondheim, NORWAY involvement of caregivers increases; residents medicaments on the cognitive function in and family express their satisfaction explicitly; terminally ill in the elderly. Material and Falls and subsequent injuries is a major cause of the process of interprofessional teamwork Method: 20 female and male and terminally ill morbidity and mortality in older people, but grows; consultation with elder people, family patients aged 65 or older with good abilities have up till now not been paid attention to in and relevant others happens systematically; being not cured with morphine during last four palliative medicine. About 30 % of home- measures are developed and adapted in a

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dynamic way; each professional discipline Abstract number: 475 patients: [symptoms management], discovers its position within the whole. The Presentation type: Poster [gratefulness toward being able to perform main obstacle remains the lack of knowledge Poster number: P55 some physical functions], [renewed spirits in and skills for interprofessional teamwork. facing up to their illness], [achieving their roles Conclusion: Individualisation and A phenomenological investigation into within their families], [hope], [sense of relief interprofessional cooperation, based on the the need for palliative care in end stage derived from medical services], [gratitude for assessment and adjustment of the quality of life, heart failure the consideration of others], [religious beliefs] ameliorates substantially the quality of care of and [unconquerable personality]. 3) It became elder nursing home cancer patients. Margaret Kendall, Delamere Centre, Cheshire, evident that the psychological state of the GREAT BRITAIN patients seesaws between the weight of distress brought about by their illness and the mental Abstract number: 474 Over the last 25 years an upsurge of interest and support that they receive. This study suggests Presentation type: Poster research into the care of dying people has that palliative care should include means for Poster number: P54 resulted in improved symptom control and promoting mental support and for support. Yet even with these welcome transforming psychological distress into mental Experiences of patients with a developments not all dying patients benefit support, in addtion to direct approaches new diagnosis of motor neurone from the expert services of palliative care towards easing some of their distress. disease: the importance of the palliative teams.The World Health Organisation, in its care approach definition of palliative care, articulates an approach associated with life-limiting illness. Abstract number: 477 Heino Hugel, Palliative Medicine, Liverpool L25 However, access to these services outside the Presentation type: Poster 8QA, GREAT BRITAIN, J Lee, The Walton Centre diagnosis of cancer is limited. This Poster number: P57 For Neurology And Neurosurgery, Liverpool, phenomenological study explores the lived GREAT BRITAIN, N Grundy, The Walton Centre experience of patients with End Stage Heart Development of a Directory of Specialist For Neurology And Neurosurgery, Liverpool, Failure and attempts to ascertain whether these Palliative Care Services Available for GREAT BRITAIN, S Rigby, The Walton Centre patients would benefit from a Palliative Care Patients with End-Stage Heart Failure For Neurology And Neurosurgery, Liverpool, intervention.Using a qualitative approach, a GREAT BRITAIN, C Young, The Walton Centre purposive sample of 6 patients whose disease Jennifer Smith, Department of Palliative Care, For Neurology And Neurosurgery, Liverpool, was classified as NHYA IV, were interviewed Liverpool, GREAT BRITAIN, Emma Richards, GREAT BRITAIN using an unstructured interview technique. The Willowbrook Hospice, Prescot, GREAT BRITAIN, interviews were tape-recorded and transcribed Clare Littlewood, Whiston Hospital, Prescot, Aim of the study: Little is known on how verbatim. The transcripts and researchers’ field GREAT BRITAIN current care practice following palliative care notes were analysed following Giorgi’s principles influences the experience of a new methodological interpretation. The essences Introduction: Heart failure patients often have diagnosis of MND for patients. This interview- which emerged from the data were · The need to unmet needs and uncontrolled symptoms. based study aims at exploring issues protect partner and/or family. · The burden of Palliative Care, with its emphasis on the holistic surrounding a new diagnosis of MND in everyday living. · Regret. · Waiting to die. approach, may be of benefit. The Merseyside & patients attending a large regional neurology Similarities to the experiences of cancer patients Cheshire Palliative Care Cancer Network Group centre in the North-West of England. Method: were identified in the course of the study, (MCPCCNG) set up a subgroup to address the Consecutive patients newly diagnosed with leading the researcher to conclude that a Specialist Palliative Care (SPC) needs of these MND were included into the study and palliative care intervention may be of benefit to patients. This subgroup concentrated on issues interviewed within six weeks of diagnosis. A the patients with Heart Failure. However the of end-stage heart failure patients, in patient-lead semi-structured interview current model applied to cancer would not be collaboration with the Cheshire & Merseyside technique with open-ended, non-directive appropriate, due to the difficulties associated Cardiac Network (CMCN). The lack of questions was used. Data were analysed with with diagnosing dying in non-malignant knowledge of the SPC services available for interpretative phenomenological analysis (IPA) disease. The necessity for further research has heart failure patients in different parts of the independently by three researchers. At first been identified, to create a model of region was identified. A directory of current emerging themes from individual transcripts, intervention that would be suitable for non- services was compiled to address this. then recurrent themes across transcripts were malignant disease. Methodology: A questionnaire was posted to the identified. Recruitment of new patients to the chairperson of the 7 Integrated Clinical study was continued until saturation of themes Networks (ICNs) within the MCPCCNG to was reached. Results: Thirteen patients (9 male, Abstract number: 476 identify in-patient and outpatient services 4 female, ratio 2.2:1, mean age: 64 years SD: 14, Presentation type: Poster available for patients with end-stage heart range: 33-79, four bulbar, nine limb onset of Poster number: P56 failure. It asked about referral criteria and the MND) were interviewed. The most important number of referrals for patients with end-stage emerging themes were: a) The time before Palliative care for psychological distress of heart failure received within the last year. The diagnosis: Often characterised by a tortuous patients living with progressive same questionnaire was conducted by diagnostic process involving different health neuromuscular illness telephone with Community and Hospital SPC care professionals b) Being given the diagnosis: teams. Results: Responses were received from Patients appreciated an individual approach by Mitsuko Ushikubo, Division of Nursing, 86% services. All accept referrals for patients the clinician respecting their different ways of Department of Health Sciences, Tokyo, JAPAN with non-malignant disease with restrictions, receiving bad news c) Physical difficulties: some assess cases on an individual basis. Greater Significant in most patients already at diagnosis Purpose: Progress in medical technology and access to psychology and lymphoedema services often resulting in feelings of lost independence treatment has led to patients with progressive was highlighted. The results are presented and and loss of control d) Information: neuromuscular illnesses surviving for longer have been compiled into a directory format. Discrepancies existed between patients and periods of time. These patients may experience Conclusion: A directory of SPC services their relatives. Some patients did not want various distresses. In order to facilitate palliative available for patients with end-stage heart information regarding their disease and would care for them, the purpose of this study was to failure is available to facilitate collaboration leave information seeking to their relatives. e) identify the psyhological state of in-home care between SPC and cardiology, aiming to improve Formal support: Some patients felt patients living with progressive neuromuscular symptom control for this group of patients and overwhelmed by the multitude of services illnesses for more than 10 years. Method: Data more appropriate referral. offered following diagnosis. Conclusion: This were obtained from semi-structured interviews study underlines the importance of a multi- with nine sets of patients and their families. A disciplinary, well coordinated approach based qualitative induction analysis was applied to Abstract number: 478 on palliative care principles for patients with extract categories of their psychological Presentation type: Poster MND right at diagnosis. distesses and mental support. Results and Poster number: P58 Discussion: 1) Eight categories of psychological distress of the patients were identified. The A Network Approach to Formulation of category [physical and mental suffering arising Guidelines for End-Stage Heart Failure from somatic symptoms and difficulties in their daily lives] seemed to lead to other seven Jennifer Smith, Department of Palliative Care, categories of psychological distress: [anxiety Liverpool, GREAT BRITAIN, Clare Littlewood, related to an unpredictable future], [feelings of Whiston Hospital, Prescot, GREAT BRITAIN pity toward one’s family] , [distress over things that the patient wants to do but cannot], and so Introduction: Patients with end-stage heart on. 2) The following 10 categories were failure frequently have uncontrolled symptoms extracted as reflecting the mental support of the and unmet needs, and the holistic palliative

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approach has much to offer. This has been consent or to refuse treatment? Healthy of daily living, presence of comorbidities, poor recognised in such national documents as the individuals and medical professionals too often nutritional status and weight loss, and National Service Framework for Coronary Heart assume that QoL in LIS is poor and that such a abnormal vital signs and laboratory values. Disease and the NCHSPCS report, ‘Reaching life is not worth living. Data from the French Disease specific predictors of survival were Out: Specialist Palliative Care for Adults with Association for LIS show that in chronic LIS, identified for dementia, COPD and CHF. No Non-Malignant Diseases’. The Merseyside and mental well-being is close to that of the general study evaluated the relationship between Cheshire Palliative Care Cancer Network Group French population. Suicide thoughts and refusal survival and palliative status. Conclusion: (MCPCCNG) comprises 7 integrated clinical of life sustaining treatment exist but are prognostic models that attempt to estimate networks in which different local projects were infrequent. We believe that patients suffering survival of ≤ 6 months in non-cancer patients taking place in an uncoordinated way. A from LIS should not be denied the right to die – have generally poor discrimination, reflecting network sub-group was established in and to die with dignity – but also, and more the unpredictable nature of most non- colloboration with the Cheshire and Merseyside importantly, they should not be denied the malignant disease. However, a number of Cardiac Network (CMCN) and CHD right to live – and to live with dignity and the generic and disease specific predictor variables Collaborative (CHDC), aiming to improve best possible pain and symptom management. were identified that may help clinicians identify service provision for end-stage heart failure older, non-cancer patients with poor prognoses patients throughout the region in a coordinated and palliative care needs. There is a need for manner. Methodology: A ‘Think-tank’ event Abstract number: 480 simple, well-validated prognostic models that was held, attended by doctors and nurses from Presentation type: Poster provide clinicians with objective measures of Cardiology and Specialist Palliative Care (SPC), Poster number: P60 palliative status in non-cancer patients. GPs and managers. This aimed to identify the SPC services these patients require, effective A prospective study to assess the models of service delivery and issues for SPC. palliative care needs of patients with Abstract number: 482 This highlighted the need to develop symptom severe heart failure Presentation type: Poster control and referral guidelines, to establish joint Poster number: P62 nurse-led clinics and to organise joint Paul Paes, Palliative Medicine, Oxford, GREAT educational events. It was also recognised that BRITAIN Recruiting older people with heart failure formulation of a directory of SPC services into a longitudinal study exploring available for end-stage heart failure patients Aim: To prospectively assess the symptoms palliative care needs would be very useful. A working party has (physical and psychological) and quality of life formulated symptom control and referral of patients with severe heart failure. Method: Sarah Barnes, Sheffield Institute for Studies on guidelines. A service directory is being Patients with NYHA III or IV heart failure filled Ageing, Sheffield, GREAT BRITAIN, Merryn 9 APRIL developed by means of telephone and postal in 3 questionnaires to assess their symptoms Gott, University of Sheffield, Sheffield, GREAT questionnaires. The Way Forward: A one-day and quality of life: EORTC QLQ-C30, Kansas BRITAIN, Sheila Payne, University of Sheffield, partnership conference of the MCPCCNG, City cardiomyopathy and HADS scales. Results: Sheffield, GREAT BRITAIN, David Seamark, CMCN and CHDC is due to take place and a 11 patients completed the questionnaires. The Exeter University, Exeter, GREAT BRITAIN, Chris follow-up event next year is planned. biggest physical symptom problems were Parker, University of Sheffield, Sheffield, GREAT dyspnoea, insomnia, fatigue and pain. BRITAIN

Depression was clinically significant in 45% of SATURDAY Abstract number: 479 patients and anxiety in 18%. Overall quality of Objective: To examine the methodological Presentation type: Poster life was scored at 33%. Poor social, role and issues encountered in recruiting older people Poster number: P59 physical functioning were major contributors to with HF into a longitudinal study exploring this score. Conclusions: Patients with heart their palliative care needs. Method: Electronic CONTINUING AND PALLIATIVE failure have considerable symptom and quality records in 16 GP practices in 4 UK locations CARE IN VEGETATIVE STATE, of life issues that need addressing. These were searched for patients aged >60 with HF. MINIMALLY CONSCIOUS STATE AND palliative care needs are comparable to those Patients were recruited by letter and follow-up LOCKED-IN SYNDROME patients with cancer. phone call. Questionnaires are being sent 3 monthly for 2 years to all participants (NYHA Steven Laureys, Neurology and Cyclotron 2–4) and their informal carers where Research Centre, Liege, BELGIUM, Frédéric Abstract number: 481 appropriate. Qualitative data are also being Pellas, Service de Rééducation – CHU Presentation type: Poster collected including through post-bereavement Carremeau, Nimes, FRANCE, Philippe Van Poster number: P61 interviews with carers. Results: Of 1826 patients Eeckhout, G Hospitalier Pitié-Salpêtrière, Paris, extracted from the searches, 19% were FRANCE, Marie-Elisabeth Faymonville, Pain Prognostication in older people who are ineligible, 51% were excluded or refused and Centre & Palliative Care Unit, Université de dying from diseases other than cancer. 30% participated, of which 42% nominated a Liège, Liège, BELGIUM, Gustave Moonen, Can it be done? carer. Participants were younger (median age Neurology, Université de Liège, Liège, BELGIUM 77), and more likely to be male (54%) than Peter Coventry, School of Nursing, Midwifery non-participants. 69% reported 2+ co- Palliative care (PC) focuses on helping patients and Social Work, Manchester, GREAT BRITAIN, morbidities. To date all participants have been with any type of incurable disease maintain a Gunn Grande, University of Manchester, sent 2 questionnaires: 92% and 90% good quality of life (QoL). We here focus on Manchester, GREAT BRITAIN, David Richards, respectively have been returned completed devastating neurologic conditions that occur University of York, York, GREAT BRITAIN, (reasons for drop-out include ill-health and following severe acute brain damage and Christopher Todd, University of Manchester, death). Initial self-reported NYHA was: 2: 65%, dramatically impair cognition (vegetative state Manchester, GREAT BRITAIN 3: 29% and 4: 6%, with 3 and 4 increasing to VS & minimally conscious state MCS), or 32% and 7% respectively by questionnaire 2. produce complete physical dependency without Background: most people in contemporary Conclusion: A high number of HF patients need cognitive deficit (locked-in syndrome LIS). Few western society die of chronic circulatory, to be identified from GP records to recruit data have been collected concerning the care respiratory and neurological diseases in old age. participants. Issues uncovered during searches given to VS patients and whether this affects the Whilst palliative care is appropriate for elderly included poor record coding and gate keeping. incidence of medical complications or life patients with chronic, non-malignant disease Preliminary data indicate the importance of a expectancy. If the diagnosis of VS is beyond few of these patients access such care compared longitudinal element to explore the palliative doubt, and the passage of a year or more has with cancer patients. Objective referral criteria care needs of people with HF. greatly reduced the chance of recovery, based on accurate estimation of survival may withdrawal of artificial hydration & nutrition facilitate more timely referral of non-cancer can be considered. There are no existing patients most appropriate for palliative care. guidelines regarding the care of the MCS, an Objective: to identify tools and predictor entity only defined two years ago. Future variables that might aid clinicians estimate research should tell us more about the best PC survival and assess palliative status in non- and curative care. But in all circumstances, the cancer patients aged 65 years and older. patient should be treated with dignity, and Methods: systematic review and quality caregivers should be aware of the patient’s assessment using criteria modified from the potential for understanding and perceiving literature. Results: from 85 initial papers, 11 pain. In LIS, patients can live as long as 26 yrs, studies that evaluated prognoses in hospitalised emphasizing the need for a renewed ethical and and community-based older adults with non- medicolegal framework. Who speaks for the LIS malignant disease were identified. Only 3 patient? With the initial handicap of studies validated their results in a second, communicating only through an eyeblink, who independent test set. Key generic predictors of can decide whether the patient is competent to survival were increased dependency of activities

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Abstract number: 483 11(10%). 70% of patients were referred for Abstract number: 486 Presentation type: Poster terminal care, 50% for symptom control, 33% Presentation type: Poster Poster number: P63 for pain control. This contrasts with cancer Poster number: P66 patients where 52% were referred for pain Do Patients with Alcoholic Liver Disease control and only 22% for terminal care. At The Evaluation of Analgesic Therapies in Need Palliative Care? assessment by the HPCT, patients with non- Chronic Pain Management. Do they have malignant disease had multiple symptoms. Pain an impact on patients’ aspects of Quality Libby Ferguson, Palliative Medicine, Glasgow, was the most common symptom (57%); of life? GREAT BRITAIN, Kathleen Sherry, The Ayrshire ‘chestiness’ (47%); agitation (25%); dyspnoea Hospice, Ayrshire, GREAT BRITAIN, James D R (22%). The average length of involvement by Athina Vadalouca, Anesthiology, Pain and Rose, Medical Directorate, The Ayr Hospital, the HPCT was 8 days. 80% of patients died in Palliative Care, Athens, GREECE, Erofili Argura, Ayrshire, GREAT BRITAIN hospital. This contrasts with cancer patients Aretaieion Hospital, University of Athens, where only 42% died in hospital and 39% were Athens, GREECE, Ioanna Siafaka, Aretaieion Background. Palliative care aims to improve the discharged home. Conclusion: Patients with Hospital, University of Athens, Athens, GREECE, quality of life of patients with incurable non-malignant disease have multiple symptoms Anna Chatzidimitriou, Athens Medical Center, illnesses. Alcoholic liver disease is an increasing and are referred late in the disease trajectory – Athens, GREECE cause of morbidity and mortality in Scotland. terminal care was the most common reason for Scoring systems such as the Maddrey referral to the HPCT. Non-malignant disease is Introduction This study aims to evaluate the Discriminant Function (MDF) and Glasgow characterised by prognostic uncertainties. analgesic therapies in chronic pain Alcoholic Hepatitis Score (GAHS) allow Rather than just resorting to palliative care in management. In addition, it aimed to identification of patients with poor short-term the terminal phase, we recommend earlier investigate the effect of pain management on prognoses. Scant research is available about the referral so that the HPCT can support the acute different aspects of patient’s quality of life: last phase of life for these patients. Aim. To team in maximising symptom control and general activity, walking, working, mood, social describe systematically the physical and quality of life. relationships, sleep and pleasure in life. Method psychosocial needs of patients with severe A number of 260 chronic non-malignant pain alcoholic liver disease admitted to a District patients from the pain management unit of General Hospital. Subject and Methods. A Abstract number: 485 Aretaieion hospital volunteered to participate in prospective study of patients with alcoholic Presentation type: Poster the study. For the needs of the study a ‘before liver disease admitted to The Ayr Hospital over a Poster number: P65 and after therapy’ design was set up. six-month period. Cases selected had severe Participants were given a semi-structured alcoholic hepatitis by MDF and GAHS criteria or Multi-disciplinary COPD Clinic Poster interview about demographics, personal and end stage cirrhosis. Patients were interviewed medical characteristics supplemented by a and the following data collected; demographics, Deirdra A Sives, Palliative Medicine, Airdrie, questionnaire, the Brief Pain Inventory medical interventions and outcomes. GREAT BRITAIN (Wisconsin BPI; Daut et al., 1983). Results The Symptoms were assessed using the Palliative results revealed that for both types of pain, the Care Outcome Scale (POS) and the Hospital Chronic Obstructive Pulmonary Disease analgesic therapy reduced the pain intensity Anxiety and Depression Scale (HADS). Results. (COPD) is a major public health problem. The and a significant percent of the patients felt 11 patients were reviewed, 9 males, 2 females, growing recognition that many healthcare 50% or more relief. All patients experienced mean age 48 years (range 31–66). Physical providers and patients take a nihilistic view of decrease or no change in pain and all but one symptoms reported included fatigue (100%), the therapy of COPD has led to the inception of reported increase of relief. In addition, it was pain (73%), anorexia (64%), nausea (55%) and The Global Initiative for Chronic Obstructive found that pain had significantly less effect on breathlessness (18%). Other symptoms Lung Disease (GOLD). Palliative care is variables related to quality of life such as mood, mentioned were hiccoughs, itch, sweating and traditionally linked to cancer but it is now social relationships, sleep and pleasure of life, insomnia. Psychological symptoms were recognised that palliative care has a role in non- general activity, walking, and working after one prevalent with anxiety reported in 82% of cases malignant conditions such as COPD. Recent month under pain management. Conclusion and moderate to severe depressive symptoms British Thoracic Society guidelines recommend Chronic pain has a global effect to patient’s life. found in 45%. Issues of spirituality, body image, a multi-disciplinary approach to COPD. In Analgesic therapy reduces pain intensity but addiction, guilt, family and financial concerns response to these observations a pilot monthly contributes in the improvement of some of the were also raised. An improvement in physical multi-disciplinary COPD Clinic was set up in psychological and social variables related to symptoms excluding fatigue and anorexia was December 2003. This clinic has, as its core staff, pain. Pain management can have a holistic demonstrated in those who completed serial a respiratory nurse specialist, a respiratory effect on patients life and medical professionals POS. 6/11 patients died, mean duration of 6 physiotherapist, a senior palliative care could provide analgesic therapies which will be days from initial review. Conclusion. Patients physician and a consultant chest physician. applied to the subjective needs of the patient. with severe alcoholic liver disease suffer Other medical and para-medical professions physical and psychological symptoms, which have facilitated slots available during to see may be addressed by a multidimensional, patients as required. Patients are given the Abstract number: 487 palliative care approach. opportunity to explore any relevant issues such Presentation type: Poster as the impact of COPD on their quality of life. Poster number: P67 Structured assessment tools are completed Abstract number: 484 including the HADS and St. George’s Hospital Evaluation of Clinical Supervision at St Presentation type: Poster Respiratory Questionnaire.Thirty-five Christopher’s Hospice Poster number: P64 appointments were analysed over 6 months representing 24 new attendances. Subjects had Ailish Carr, Matron, London, GREAT BRITAIN, Specialist Palliative Care in Non- severe airflow obstruction, a high level of Fiona Carr, St Christopher’s Hospice, London, malignant Disease in an Acute Hospital symptoms and high scores in the St. George’s GREAT BRITAIN, Jean Levy, St Christopher’s Respiratory Questionnaire (SGRO) for disease Hospice, London, GREAT BRITAIN Norma O’Leary, Department of Palliative impact. Ventilation and prognosis was not Medicine, Dublin, IRELAND, Eoin Tiernan, discussed as often as had been expected. High Aims St.Vincent’s University Hospital, Dublin, levels of unsuspected anxiety and depression Clinical supervision was offered to nurses at St IRELAND were measured, as were major adverse impacts Christopher’s Hospice from September 2002. on quality of life. Lung function was not always Ten groups were organised containing nurses Objectives: Up to 66% of all Irish deaths take a reliable measure of disease impact. The health from both the wards and the home care unit. place in hospitals or institutions. Hospital care professionals involved in the delivery of Ten months after its introduction, an Palliative Care Teams (HPCT) have been this clinic felt it a useful way to manage patients evaluation was carried out, in order to examine established to meet the needs of patients dying with severe COPD. This clinic is time and the nurses’ reactions to taking part in clinical from malignant and non-malignant conditions. resource intensive. Further data will be required supervision, and whether it was perceived to be This study examined all the non-malignant to show whether outcomes are improved and a worthwhile activity. cases referred to the team over an 18-month whether multi-disciplinary clinics in COPD are period. Methods: A retrospective chart review justifiable. Method was carried out. Information from the first The evaluation was carried out by anonymous HPCT assessment was gathered. Results: There questionnaire to all who had been taking part were 864 referrals to the HPCT over the 18- in clinical supervision. The questionnaires month period. 14% had non-malignant disease; contained fourteen questions asking for 53% were female; average age was 70years. Most responses to various statements using a 5-point common non-malignant diagnoses: Stroke Likert scale from “Strongly agree” to “Strongly 26(23%), respiratory disease 25(22%), disagree”. There were also open questions neurodegenerative disorders 14(12%), dementia asking respondents how many sessions they

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had attended, to identify two items that were changing attitudes towards patients with Excellence (NICE) 2004, Improving supportive liked and disliked about clinical supervision, incurable diseases. and palliative care for adults with cancer, The and reasons for non-attendance where Manual. NICE, London. Available at appropriate. Responses were input to and http://www.nice.org.uk/pdf/csgspmanual.pdf analysed on an SPSS computer programme. Abstract number: 489 Presentation type: Poster Results Poster number: P69 Abstract number: 491 There were 67 returned questionnaires (68% Presentation type: Poster response rate). Difficulties of Palliative Care in Lithuania Poster number: P72 There was an average of 74% positive statements about clinical supervision, ranging from 91% Arvydas Seskevicius, Faculty of Nursing, Kaunas, Improving the communication in a Home agreeing that they now understand what LITHUANIA Palliative Care Network clinical supervision is about, to 54% agreeing that it has kept them motivated at work. Main Our country can’t boast about advanced Carlo Peruselli, Palliative Care Unit / Oncology reasons for non-attendance were holidays and Palliative Care. Physicians practicians don’t pay Dept., Biella, ITALY, Pella Alessandra, Fondo, off duty. The two items liked best were mainly enough attention to Palliative Care. Such Biella, ITALY, Grubich Sergio, Palliative Care time away to reflect on clinical practice and restricted understanding of man’s health from Unit, Biella, ITALY help/encouragement/support from others. The the scientific and treatment point of view two items most disliked were that it is doesn’t satisfy the society anymore. Besides, it’s An element of criticality in the activity of a sometimes difficult to leave the ward/office and not usual in our country to talk about death Home Palliative Care Network (HPCN) is the small groups or low attendance. openly in the families. This topic is usually a difficult sharing of the information about tabu. Such conception makes acceptance of the patients. A lot of information, available in the Analysis/Conclusion fact of loss of the patient even harder and he patients’ home, is not organized in a way to be These results show a very positive view of has to leave without a sincere talk with the easily interpreted and above all it is not shared. clinical supervision. The hospice has therefore loved ones about his feelings conerning death. All the members of the team must be able to decided it should be offered to all nurses. Other Weaknesses of Palliative Care: – We only share and exchange the information about the points for consideration were whether it could recently started teaching the students about patient’s condition in real time. We have be widened to include the multi-professional palliative care at the university level; – There’s therefore defined and made operative a project team, whether it should be compulsory or no hospice network, no grief service; – There’s a (‘Gerasim’ Project) with the following main mandatory, and how to ensure maximum lack of social workers, although we already have objectives: –Organizing a monitoring system of attendance. this kind of education at the university level; – a HPCN, activating a computer network for 9 APRIL There’s strong fear in most families to talk communicating. –Organizing a system of about death. Strengths of Palliative Care: – We information sharing among the operators in Abstract number: 488 have highly qualified specialists doctors the network, (GPs, P.C. doctors and nurses, Presentation type: Poster working in the area of oncology, who had emergency services). We have defined a Poster number: P68 studies or training in advanced foreign minimum data set, referred to the clinical countries. situation of the patients, to the monitoring of

A vision for the future palliative care the QoL, to the treatments in progress and their SATURDAY development in Russian Regions effectiveness. Some data are fixed, while other Abstract number: 490 are variable and continuously updated. We have Elena Vvedenskaya, Gerontology and Family Presentation type: Poster selected a group of GPs willing to participate in Medicine, Nizhny Movgorod, RUSSIA, Irina Poster number: P70 the initial project, to be extended later to all Vvedenskaya, Nizhny Novgorod State Medical GPs. A specific formation course is provided for Academy, Nizhny Movgorod, RUSSIA Adult cancer patients with these doctors. We defined the hardware for the incurable disease: an exploration of project (mobile/palm) and a web-based In Russia, palliative care has generally been continuity of care appliance, which provides the means for each developed by enthusiasts and volunteers – operator in the HPCN to log-in and navigate in although its success is heavily dependent on the SEAN HUGHES, Macmillan Research Unit, Internet. The platform was developed in web- attitude of the local authority, which may Manchester, GREAT BRITAIN, ZIV AMIR, based technology, which permits the managing respond differently in different regions. Macmillan Reserach Unit, Manchester, GREAT and organizing of the flow of information of Generally, new services are being linked to BRITAIN, KAREN LUKER, The University of the patients’ data, through the use of a browser institutions already operating in the health Manchester, Manchester, GREAT BRITAIN and a medium–large band connection. The system. In future, the shape of palliative care main advantages provided by the application of developments may be influenced by: ● a rise in Background: Cancer patients with palliative care the project are: –The opportunity to economic growth over the next four years with needs are known to encounter large numbers of continuously monitor the patients’ conditions. an expected increase in the health care budget; professional caregivers from a range of provider –The opportunity, for all the HPCN operators, ● a palliative care vision for the whole of agencies (NICE 2004). Good continuity of care to give immediate and targeted answers on the Russia; ● the development of national is crucial if the care patients receive is to be effective needs of the patients and/or their guidelines; ● continued advocacy for the perceived by them as consistent, timely, family –The possibility of defining projects in availability of opioid drugs; ● the ability for coherent and responsive to their changing order to improve the quality of care, based on hospitalised patients to receive palliative care in needs. Little is known about how the criticality which emerged from the system the same settings; ● an anticipated commissioners of services are attending to of continuous monitoring. enhancement to home care; ● an awareness- continuity in their service development plans, raising programme for government officials and or how guidance relating to continuity relates to the public. In Nizhny Novgorod Region like in professional practice. Of central importance is Abstract number: 492 many other regions through over the country, how palliative care providers conceptualise Presentation type: Poster opportunities for palliative care development continuity and how they attempt to Poster number: P73 include the following: ● an awareness-raising operationalise this in their work. Study Aims programme for government officials and the and Objectives: 1. To explore how palliative care Evaluation of the national policy on public; ● directors of medical institutions who professionals conceptualise continuity of care palliative care in the Netherlands are becoming sympathetic to the establishment in terms of their working practice and role 2. To of palliative care units; ● the linking of identify barriers to and facilitators of continuity Wim J.J Jansen, Agora, Bunnik, NETHERLANDS, palliative care to geriatric services (for non- of care from the professional caregiver Jos A.H. Baecke, BMC, Leusden, cancer patients); ● expanded sources of standpoint 3. To investigate if and how NETHERLANDS, Gert Cazemier, BMC, Leusden, funding; ● the integration of palliative care commissioners of palliative care services NETHERLANDS training into medical colleges and universities address continuity of care in business plans and as well as into the schedule of postgraduate service level agreements. 4. To map the Introduction education; ● a palliative care official leader conceptual development of continuity of care In 2000 ten regions in the Netherlands (Health Ministry manager) for the region, who in the palliative healthcare context. Methods: participated in a pilot-project ‘Development of is responsible for palliative care services; ● the Case study strategy. A variety of data collection local networks palliative care’. Based on the development of the head hospice as a regional techniques will be used including: document results of this pilot a nation-wide development clinical and training establishment; ● a analysis; group and individual interviews; non- of about 70 local networks palliative care started network of medical establishments which will participant observation. The study will be in 2003. All institutions and organisation form the basis for palliative care; ● growing carried out in 3 PCTs in the Greater Manchester involved in palliative care in a certain region resources within the voluntary sector; ● a & Cheshire Cancer Network. should collaborate to achieve a higher local religious awakening which is leading to the Findings/Conclusions: Study is at the design level of quality of palliative care. The state acceptance of humanitarian support and stage. Reference: National Institute for Clinical finances network-coordinators to develop these

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networks. Comprehensive Cancer Centres have Abstract number: 494 research of this kind in Ireland. The research an important role in supporting network- Presentation type: Poster indicates that there could be a clear benefit to development. Poster number: P75 patients with advanced respiratory disease from having specialist palliative care input, preferably Methods One Hundred Years of Palliative Care: at an earlier stage, than is currently being A structured questionnaire is used two times St Joseph’s Hospice 1905–2005 offered. Some of the barriers to this service (2003/2004) to evaluate the development of being offered to patients are well documented local networks. The questionnaire consists of 28 Mary Teresa Clarke, Chief Executive, London, in the international literature. However this questions on six different topics. Statistical GREAT BRITAIN, Christina Mason, St Joseph’s research highlights willingness by the specialist analysis of the data is performed in SPSS. Five Hospice, London, GREAT BRITAIN respiratory and palliative care teams to different scores are calculated for each network. collaborate, which indeed is different. There are Results of the individual networks is aggregated On January 15th 2005, St Joseph’s Hospice some findings in this research that may on the level ‘pilot region’ versus ‘non-pilot celebrates its centenary; the arrival from Ireland influence the development and expansion of region’ of the small group of Sisters of Charity who hospice and palliative care services in Ireland in founded St Joseph’s. Their mission at that time the future. Results was to care for the sick and poor of Hackney, The response on the questionnaire was both East London and initially they did this from a times 85%. The group of ‘pilot regions’ shows large house that had been given to the Sisters by Abstract number: 496 in four of the five items a significant higher a Jewish benefactor. Now in 2005, patient and Presentation type: Poster score than the group ‘non-pilot regions’. family care takes place in a newly completed Poster number: P77 Comparison of both questionnaires shows that and substantial four storey building. In this development stagnates and in some regions presentation, the key stages of the hospice’s Where there are no borders: Providing an signs of competition are recognized due to history will be outlined and the way in which integrated seamless specialist palliative overcapacity and aspects of financing palliative changing social and health conditions care service care. influenced these stages and the decisions that Bottlenecks are finances, collaboration and were taken to implement change. Emphasis will Karen Groves, WL, S&F Palliative Care Services, shared vision, role of the Comprehensive be given to the last of these stages, the decision Merseyside, GREAT BRITAIN Cancer Centres, dimensions of the region and to rebuild the hospice in order to provide the familiarity with the networks most up to date facilities for palliative care of In an ideal world a palliative care service should patients and their families. There were a be seamless to the patient and family. However, Baecke JAH & G. Cazemier. Monitor netwerken palliatieve substantial number of challenges in considering in reality, due to the fact that different parts of zorg. Resultaten 2003. this building programme. Attention will be the service may be provided and managed by Baecke JAH & G. Cazemier. Monitor netwerken palliatieve different organisations, both NHS and zorg. Resultaten 2004. focused on the following: · the many different ethnicities, languages, faiths and cultures of the independent, this may not be so easy to population served by the hospice; · the achieve. In an attempt to overcome the barriers Abstract number: 493 provision and maintenance of choice for and hurdles which obstruct seamlessness of the Presentation type: Poster patients and their families; · the care of families; patient experience, West Lancs, Southport and Poster number: P74 · the balance between the in-patient facilities Formby has developed a virtual single service and the service given to patients at home; · the consisting of all elements of palliative care, Palliative care in the Kemerovo region, integration of physical, emotional, social and owned and managed by different Trusts and Russia. spiritual aspects of care; · the provision of organisations. The service works to joint special facilities for infection control. The organisational and clinical guidelines and Olga Usenko, Hospice, Kemerovo, RUSSIA, Olga presentation will also consider project protocols, sharing a single, electronic Berezikova, Kemerovo Regional Hospice, management, how members of staff were multiprofessional clinical record. This poster Kemerovo, RUSSIA involved in the decision making process, the describes the nuts and bolts of the integrated practical considerations of available space, and service and how the pieces of the jigsaw fit The Kemerovo region has a population of 2,919 the balance between the functional and together to provide benefits for the patient, million. The elderly make up 20% of the aesthetic aspects of a large C21st palliative care family and the health professional who care for population. In 2003, the morbidity rate from facility. There are lessons to be learned for all them, both within and without the team. cancer was 284.4 per 100,000, the mortality rate who are attempting to provide a palliative care from cancer was 197.3 per 100,000 in the for the present and the future. region, and there were 5,759 deaths due to Abstract number: 497 cancer. The average percentage of advanced Presentation type: Poster cancer was 15.4%. At the present time, 4 Abstract number: 495 Poster number: P78 Hospices operate in the Kemerovo region. The Presentation type: Poster number of beds is 147 or 0.50 per 10,000. 1,803 Poster number: P76 St. Christopher’s Hospice (SCH) @ Home patients with advanced cancer (31.3%) received (H@H) – Year 1 evaluation palliative care and 583 patients (10.1%) died in Managing the delivery of a palliative care hospices in 2003. The Kemerovo Regional service to patients with advanced Sara Burroughs, Home Care, London, GREAT Hospice is equipped with 40 beds. It served a respiratory disease BRITAIN, Pam Bale, GREAT BRITAIN, Penny population of 2,918,900 in 2003. 519 patients Hansford, GREAT BRITAIN, Vicky Robinson, were admitted to the hospice; 229 (44.1%) of Martin McCormack, Social work department, GREAT BRITAIN those patients died. The home care team visited Dublin, IRELAND 642 patients. The Hospice is the methodological Introduction There is growing evidence that centre of palliative care in the region. Another Quality of life for people dying from advanced people prefer to be at home at the end of life. hospice for the residents of Kemerovo city is the respiratory disease is often suboptimal, as access H@H intends to fulfil these wishes, providing Kemerovo City Hospice. It has 60 beds. Hospice to services can be limited to symptom skilled nurses and carers. In the UK there are served a population of 523,110 in 2003. 811 management in the acute phase of their illness. 103 adult H@H services, largely funded by the patients were cared as inpatients, 162 (20.0%) This is in stark contrast to the panoply of voluntary sector. In the area served by SCH died. 501 patients were visited at home. In 2003, services that cancer patients have access to in personal and nursing care is given by agency the Novokuznetzk Palliative Care unit served a Ireland. Prognosis in patients with advanced staff commissioned via NHS continuing care population of 577,700. It was equipped with 22 respiratory disease is poor, and it is increasingly funds. Staff are not trained in palliative care. beds. 238 patients were cared for as inpatients; accepted that such patients need good palliative Recognising these gaps in statutory services 116 (48.5%) died. The new Hospice with 25 care. With increasing requests for palliative care SCH raised voluntary funds to provide H@H. beds was opened in Prokopjevsk in 2003. It provision for all patients regardless of their This began in May 2003. Aims To enable served a population of 225,884. 235 patients diagnosis, professionals within specialist patients to remain at home for as long as were admitted to the hospice, 76 (32.9%) of palliative care services need to consider how possible and to die in their place of choice. them died. Patients with advanced cancer in the they will respond. This research examines the Methods Comprehensive information captured Kemerovo region have free treatment and care. implications of managing the delivery of a at referral, duty sheets and retrospective The Hospices’ financing is stable and gradually palliative care service to patients with advanced questionnaires completed by H@H nurses. increases. Most hospice staff obtained respiratory disease .This is achieved through a Descriptive statistics used to review service information about the advances in palliative combination of semi structured interviews with Objectives. Results 140 patients were referred, care from training courses provided by local, focus groups and the use of the Delphi method median age 72 (range 35–93). 90% had cancer. national and international medical and nursing with a panel of experts to develop a consensus Reasons for referral were patient deteriorating specialists. As a result, the awareness of statement on the management of the delivery and/or carer in need of a break (70%), and palliative care in the Kemerovo region gradually of a palliative care service to patients with psychological support for the carer (30%). 47% increases. advanced respiratory disease. This is the first of duties undertaken were physical nursing care

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(hygiene, skin care, fluids, medication), 30% Abstract number: 499 (95% CI=1.3–3.0) in another home, 37.2% (95% involved psychological/emotional support for Presentation type: Poster CI=31.5–42.9) in hospital, 0.6% (95% patients and carers, 10% was domestic chores, Poster number: P80 CI=0.1–1.2) in hospice, 7.1% (95% CI=5.0–9.2) 10% liaising with other professionals and 3% in a nursing home, and 0.3% (95%CI=0.1–0.7) was specialist control of symptoms. Total Palliative Access Links (PALs) as in an ambulance during the transport to the number of visits was 297 (median 2, mode 1, ambassadors for Palliative Care: Moving hospital. Wide differences can be observed range 0–16). Number of hours spent on visits information beyond the provider- between different geographic areas of Italy. The totalled 1279 (median 7, mode 2, range 0–70). community border and taking proportion of patients dying at home are 49.9% 68 (49%) died at home and 40 (29%) in hospice volunteering into new territory (95% CI=39.2–52.7) in NW, 25.7% (95% as their chosen place, 7 (5%) in hospital, 15 CI=15.7–35.7) in NE, 55.5% (95% CI=39.3–71.7) (11%) died before 1st visit, 6 (4%) are still alive, Peter Whan Chermside West, AUSTRALIA in the centre, and 93.5% (95% CI=88.8–98.2) in and 4 (3%) were admitted to SCH before H@H the south. According to what reported by the 1st visit. Conclusion and Future Direction 78% Background: The PALs project is funded by the caregivers about the preferred place of death of of patients died in their place of choice. Most Caring Communities Program of the Australian the patients, an homogenous preference for were referred in the last days of life. H@H is a Government’s Department of Health and dying at home was present in all areas of the vital source of skilled nursing care for patients Ageing. It aims to improve ‘grassroots’ country. More specifically, 88% of the patients and families in the last 48 hours. H@H should awareness of the underlying concepts of in NW, 87% in NE, 93% in the centre, and 98% to be purchased as part of statutory care. Palliative Care and the availability of local in the South preferred to dye at home. 5.4% of services within the Bundaberg region. A the sample preferred to dye in a hospital, more network of ‘information volunteers’ is being in the North of Italy than in the South. The Abstract number: 498 recruited, resourced, trained and supported to reported reasons for preferring hospital were Presentation type: Poster inform people about Palliative Care generally, ‘not to be a burden for the family’ and ‘to prefer Poster number: P79 and local Palliative Care options specifically, in a safer setting of care’. Conclusions: This study, community settings such as workplaces, conducted on a representative nationally based Palliative care is needed before the last schools, churches and social clubs. Objective: sample, shows that where people die is strongly months of life To analyse processes undertaken so far by the influenced by where people live, and not by 25 PAL volunteers currently active. Method: their preference. Unni Marie Rekkedal, Faculty of Medicine, Qualitative and quantitative review of PALs’ BODØ, NORWAY, Marit S. Jordhøy, Unit of activity diaries. Results: Activities were of two oncology and palliative care, Nordland broad types, with approximately equal numbers Abstract number: 501 Hospital, BODØ, NORWAY of each. 1) Talks given by PALs to groups of Presentation type: Poster 9 APRIL about 20 people on average, in church, school, Poster number: P82 Background: Late referral to palliative care is a social and community settings. 2) Responses by cited obstacle to care improvement, but the PALs to requests for information from Palliative Care Services and Irish extent to which such services are needed in community members (often in response to a Travellers – Barriers to Service and early palliation (survival expectancy > 3 poster). About half of these were of a general Training Needs months) is not extensively explored in non- nature, the other half relating to the specific selected groups of cancer patients. Aim: (and occasionally urgent) need of a dying Regina McQuillan, Medical Director, Dublin, SATURDAY Systematic symptom assessment of advanced person. Key themes were a lack of community IRELAND, Onja Van Doorslaer, St. Francis cancer patients in early palliation to explore awareness, and confusion about the Hospice, Dublin, IRELAND their palliative needs. Methods: From April relationship between dementia care and 2002 to December 2003, all patients with Palliative Care. Conclusion: The PALs project Irish Travellers, an ethnic minority are advanced cancer consecutively admitted to a takes Palliative Care volunteering into new recognised as having poor health and poor one-specialist medical oncology outpatient territory. Rather than providing person to access to health services. As part of a study clinic, reported their symptoms using a slightly person care or playing a supportive role in a exploring relationships between the Travellers modified Edmonton Symptom Assessment service, PALs serve as a link point where and palliative care services, a questionnaire was Schedule including 9 symptoms and general information can be shared to encourage those sent to palliative care service providers. The well-being. Constipation was added ad hoc. All in contact with a dying person to be aware of aims were to determine (a) extent of experience symptoms were scored on a 0 (best) – 10 (worse) the nature and availability of Palliative Care of palliative care service providers caring for numerical rating scale. Scores above 3 were services, and to access them in a timely way. Travellers, (b) if Traveller ethnicity was defined as a problem requiring intervention. To This analysis reveals that PALs are doing this by routinely recorded, (c) extent of staff training enable reports on time from assessment to engaging in a range of structured and on Travellers issues and to (d) identify providers death, only patients who died within August opportunistic activities in a variety of settings. views of barriers to Travellers receiving 2004 were included. Results: Overall 145 palliative care. 215 questionnaires were sent; the patients had died, median time from response rate was 38%. In the previous year assessment to death was 24 weeks. Median age Abstract number: 500 86% of staff had not cared for a member of the was 69 years, 57% were men and 43% women, Presentation type: Poster Travellers and over the previous five years over 35% lived alone, 60% with spouse, 5% with Poster number: P81 half the respondents had not cared for any others. Cancer origin was: lungs 41%, digestive Travellers. 88% had never received any training system 30%, breast 10%, prostate 4%, and PREFERRED vs. ACTUAL PLACE OF DEATH or education about Travellers. Traveller others 15%. For 85%, tumour treatment was the OF THE CANCER PATIENTS. RESULTS ethnicity was not routinely recorded. The reason for admittance. General well-being FROM AN ITALIAN MORTALITY FOLLOW- barrier to delivery of specialist palliative care to excluded, 45% of the patients reported 3 or BACK SURVEY Travellers that was most often identified by more intervention requiring problems. Overall, respondents was traveller mobility, leading to 10% had scores above 3 for constipation, 10% Monica Beccaro, Unit of Clinical Epidemiology, poor continuity of care. Lack of awareness of for nausea, 15% for pain at rest, 28% for pain Genova, ITALY, Costantini Massimo, National the different beliefs and cultures held by with movement, 22% for anxiety, 22% for Cancer Institute, Genova, ITALY, Miccinesi Travellers and prejudice against Travellers from depression, 26% for dry mouth, 35% for Guido, CSPO, Firenze, ITALY, Grimaldi Maria, the public and service providers were the dyspnea, 40% for appetite loss and 43% for National Cancer Institute, Napoli, ITALY second and third most commonly identified fatigue. Only 23% had no such problems. barriers. Additional issues identified were large Conclusion: A large number of patients had STUDY OBJECTIVE: to describe and analyse family networks which can cause a difficultly severe symptoms indicating that palliative care actual and preferred place of death of Italian because of overcrowding when Travellers are services should be an integrated part of terminal cancer patients, and their admitted to hospices and the isolation oncology clinics providing palliative tumour determinants. METHODS: this is mortality experienced by Travellers in hospital or treatment. The use of proper tools for symptom follow-back survey of 2,000 adults cancer hospices. Needs of health care providers include assessments is advocated. deaths, identified with a 2-stage probability training and education about the customs, sample representative of the whole country. cultures and beliefs of Travellers. Many Information on patients’ experience was respondents believe greater knowledge of these gathered from the non-professional caregiver issues would improve the quality of care given with an interview conducted by trained to the Travellers. This study showed that professionals. A schedule covered information specialist palliative care staff had little on the actual and preferred place of death of experience caring for Travellers; they identified cancer patients. RESULTS: valid interviews were their own training needs and also identified obtained for 63.5% (n=1.271) of the theoretical barriers to Travellers accessing services. sample. It can be estimated that in the whole country, 52.5% (95% CI=46.6–58.3) of the cancer patients die in their own home, 2.2%

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Abstract number: 502 patients. The patients benefit from a timely Abstract number: 505 Presentation type: Poster consultation of the oncologist and the palliative Presentation type: Poster Poster number: P83 care physician during the same visit at the out- Poster number: P86 patient clinic. The current workshop will DYING OF CANCER: THE IMPACT ON THE describe the activities of this program as well as Establishment of a palliative care FAMILY. RESULTS FROM AN ITALIAN the pros and cons of this model of practice. competence network in Helse Fonna, MORTALITY FOLLOW-BACK SURVEY Results of patient satisfaction survey will be Western Norway presented. Nurses were also ask to express their Paolo Giorgi Rossi, Agenzia di Sanità Pubblica, opinion regarding the merger of their activities. Anne Lise Ersland, Pain clinic, Haugesund, Roma, ITALY, Beccaro Monica, National Cancer Integrating palliative care physicians and NORWAY, Eli Nesheim Rønnevik, Vardafjell Institute, Genova, ITALY, Miccinesi Guido, oncologists within the same program allows a Hospice, Haugesund, NORWAY CSPO, Firenze, ITALY, Borgia Piero, Agenzia di comprehensive approach to the treatment of sanità Pubblica, Roma, ITALY, Montella cancer patients, favoring improvement of their Background: National hearings have Maurizio, National Cancer Institute, Napoli, quality of life. recommended that palliative care should be an ITALY integrated part of the public health care system. We observe that the health care network STUDY OBJECTIVE: to describe the impact of Abstract number: 504 surrounding the patient is often lacking, and terminal cancer disease on patient’s families. Presentation type: Poster that competence within palliative care benefits We analyse the economic burden and the Poster number: P85 only some of the patients. A coherent impact on daily activities. METHODS: this is interdisciplinary competence within this area mortality follow-back survey of 2,000 adults Caring for patients dying in hospitals – should be established. Since 2001 our goal has cancer deaths, identified with a 2-stage pioneering a process been to establish a competence network probability sample, representative of the whole consisting of resource groups and/or persons country. Information on patients’ experience M Taylor, Project Manager, Dublin, IRELAND, D within our region across administrative levels. was gathered from the non-professional O’Brannagáin, North Eastern Health Board, Methods: Marketing of the competence center – caregiver with an interview conducted by Drogheda, IRELAND, O Keegan, Irish Hospice Mapping out the existing available competence trained professionals. A schedule covered Foundation, Dublin, IRELAND and palliative care within the primary health information on the impact of managing care on services and the hospitals – Take initiatives for finances and on the daily activities of the Objective: To develop an integrated and multi- inter-communal cooperation – Theme meetings family. RESULTS: The main non-professional perspective approach to care of people dying in and courses within palliative care – Focussing caregiver was the child (41.7%), the spouse an acute hospital setting with a view to on the importance of palliative work at (36.4%), a sibling (5.8%), a parent (1.3%), demonstrably improving all aspects of care and administrative level – Stimulate further another relative (10.2%), or a friend (1.5%). The organisational culture. Method: Using an action education – Marketing of other palliative care mean age of the caregiver was 53.9 and 70 % research methodology, the process occurs over centers within the region – Focus on quality were female. 49% caregivers of working age two years under continuous review. Focus group control in planning, establishing routines and reported difficulties in managing their work, discussions were used to isolate local and procedures – Documentation of progress in and 71% difficulties in managing their spare discipline-specific issues. A staff survey on these processes. Results: There has been time. Most families (68%) had to pay for some knowledge, attitudes and beliefs is planned. established a palliative care competence of the care: drugs (38%), physician (23%), nurse Video and website media were developed early network within Helse Fonna which involves (19%), assistant (17%). The multivariate analysis on to trace the project. The structure detailed three hospitals and 19 of 20 local authorities. showed that families living in the south of Italy below ensures continuous feedback to hospital There have been 13 inter-communal meetings, had to pay for some of the care more than staff. Summary: Holistic care demands that several courses and monthly meetings for families living in the north (OR 3.2; 95% CI specialist care is supported by two levels of care resource personnel at Haugesund Hospital. Six 1.1–9.3), and that the age of the patient was – referred to as ‘general’ and ‘an approach’ in nurses on further education in oncology and significantly associated with the costs for the palliative care. A partnership between a not-for- one in palliative care. ESAS is used in the family (OR for unit of age: 1.06; 95% CI profit organisation (Irish Hospice Foundation) hospitals and in most of the local authorities. 1.00–1.13). Families attending old patients have & health authority (North Eastern Health One authority, Etne, has received national to pay more frequently than families attending Board) was initiated and one hospital site funding for palliative care. Evaluations indicate young patients. Age and gender of the caregiver identified with the aim of examining and increasing awareness concerning quality had no effect on the cost of the care for the improving all facets of care for patients dying in control. Conclusion: Establishment of a family. To cover the costs of the care to the hospital. Operational structures were designed competence network in palliative care places patient has been reported as somewhat or very at macro level (project committee) to ensure focus on this discipline and promotes difficult for the families by 25.4% of the hospital & community representation; and at communication and cooperation across caregiver. The multivariate analysis showed that micro level (working groups) to ensure focussed administrative levels. Improved competence difficulties to cover the costs of care were more consideration of issues impacting on patient, and quality control of routines contributes to a frequent when the caregiver was female (OR: family & staff during care at the end of life. better offer for both patients and relatives. 1.5 95% CI 1.1–2.0). Conclusions. Families must National & local media were used to build a pay only marginal aspects of care but the profile for the project and raise awareness. A impact on savings and daily life is heavy. nation-wide survey was conducted on care Abstract number: 506 preferences for dying to provide an opinion Presentation type: Poster context for the project. Government Poster number: P87 Abstract number: 503 partnership funding was attained to focus on Presentation type: Poster staff support & patient experiences. National associations – a global overview Poster number: P84 Conclusions: Specific goals have been generated concerning communications, information and Nick Pahl, Development, London, GREAT Comprehensive Cancer Care; Successful physical environment. Investigation of staff BRITAIN Integration of the Palliative Care Service support issues & support systems has been initiated & patient review systems are being An update on a recent event for national Justine Farley, Cancer Care Program, planned. The project time-line ceases in March associations in hospice and palliative care, held MONTREAL, CANADA, Manon Allard, ST. 2006 with structure reviewed in Dec 2004. This in Korea, March 2005. Initiated by Help the Mary’s Hospital Center, Montreal, CANADA, presentation details the process and will include Hospices (UK). The previous seminar linked to Benoît Deschamps, St. Mary’s Hospital Center, survey data and video presentation. the EAPC in the Hague was written up by Montreal, CANADA, Marie-Josée Caron, ST. Professor David Clark of the International Mary’s Hospital Center, Montreal, CANADA, Observatory on End of Life Care at Lancaster Dominic Labranche, ST. Mary’s Hospital Center, University, UK. Many national palliative care Montreal, CANADA associations work in isolation and find themselves re-inventing what has been St Mary’s Hospital Center is a community-based developed elsewhere. This seminar will share hospital which offers comprehensive cancer experience about how other associations have care to the multiethnic population of Montréal. contributed to the development of palliative Since 1996, palliative care team has joined the care. It will also cover: ● The possibilities for oncology staff. The in-patient unit wellcomes international e.g. standards sharing has oncology patients as well as palliative care occurred between the US and Romania. ● patients. Two years ago, the nursing staff of the Advocacy opportunities e.g. working with in-patient unit and the out-patient clinic were Government ● Organisational issues e.g. combined in the same administrative entity. structure, governance. By the end of the Therefore, the nursing staff is involved with all seminar participants will have increased their

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knowledge of what other national associations Consideration of healthcare providers’ own a Jewish benefactor. Now in 2005, patient and have achieved; and the possibilities for suffering is essential in identifying needed family care takes place in a newly completed international collaboration. adjustments in healthcare delivery and and substantial four storey building. In this management, in order to improve and foster a presentation, the key stages of the hospice’s lasting ability to respond adequately and history will be outlined and the way in which Abstract number: 507 alleviate the suffering of the terminally ill. changing social and health conditions Presentation type: Poster influenced these stages and the decisions that Poster number: P88 were taken to implement change. Emphasis will Abstract number: 509 be given to the last of these stages, the decision World Hospice and Palliative Care Day – Presentation type: Poster to rebuild the hospice in order to provide the 8th October 2005 – Awareness raising Poster number: P90 most up to date facilities for palliative care of events as a way of advocating for patients and their families. There were a improved care A Good Death in nursinge homes – substantial number of challenges in considering is it possible this building programme. Attention will be Nick Pahl, Development, London, GREAT focused on the following: the many different BRITAIN, Claire Morris, Help the Hospices, Gunnhild Jakobsen, The Palliative Medicine ethnicities, languages, faiths and cultures of the London, GREAT BRITAIN Unit, Trondheim, NORWAY, Mette Ronning, population served by the hospice; the provision The Palliative Medicine Unit, Cancer Unit, St. and maintenance of choice for patients and A review of plans for world hospice and Olavs Hospital HF, University Hospital of their families; the care of families; the balance palliative care day – 8th October 2005, Trondheim, Trondheim, NORWAY, Finn between the in-patient facilities and the service including a pre launch of the ‘state of the Guttvik, The Palliative Medicine Unit, Cancer given to patients at home; the integration of world’ publication linked to this. Initiated by a Unit, St. Olavs Hospital HF, University Hospital physical, emotional, social and spiritual aspects number of national and pan national of Trondheim, Trondheim, NORWAY of care; the provision of special facilities for organisaitons and in partnership with Voices for infection control. The presentation will also Hospices, the workshop will run through – The Background Studies suggest that palliative consider project management, how members of key messages of the day to raise awareness of patients suffer from poor symptom control. The staff were involved in the decision making hospice and palliative care to the outside world phenomena can be explained among other process, the practical considerations of available – What can be achieved through a day of action things by lack of competence by health care space, and the balance between the functional – Resources available on the website professionals. Another cause may be related to and aesthetic aspects of a large C21st palliative worldday.org The second section of the seminar the organisation of palliative care services. The care facility. There are lessons to be learned for will share experience about how national PMU was the first academic palliative care unit all who are attempting to provide a palliative 9 APRIL organisations have run awareness and established in Norway. The PMU, in addition to care for the present and the future. fundraising events and how this has running a clinic, also is responsible for contributed to the development of palliative education, research and the enhancement of care. For example, it will cover activities held in skills and knowledge in palliative care. The PMU Abstract number: 511 Australia, Canada and India. By the end of the has initiated a project called ‘Improving Presentation type: Poster seminar participants will have increased their palliative care in nursing homes in Mid- Poster number: P92

knowledge of what can be achieved by such Norway’ based on national and international SATURDAY events. recommendations. The project’s main objective What do patients in the palliative phase is to further develop and improve the palliative value in a lung cancer service? services at a local level within the Mid-Norway Abstract number: 508 Regional Health Authority, hereunder E. Tim Peel, Department Of Palliative Medicine, Presentation type: Poster establishing more beds for patients requiring North Shields, Tyne And Wear, GREAT Poster number: P89 palliative care in the region’s nursing homes. BRITAIN, Sue Longstaff, North Tyneside Methods The objectives can become reality General Hospital, Tyne and Wear, GREAT Do healthcare workers confronted with through activities directed towards increasing BRITAIN, Karen Hurson, North Tyneside patients nearing the end of life suffer? the general skills within the palliative field as General Hospital, Tyne and Wear, GREAT Implications for patient care and for well as improving the way palliative care is BRITAIN, Sian Dogan, North Tyneside General services organization. organised. To improve palliative care services, Hospital, Tyne and Wear, GREAT BRITAIN several aspects need to be addressed. The PMU Serge Daneault, Service des soins palliatifs, contribute to the development of these aspects Most published guidelines on lung cancer Montréal, CANADA, Suzanne Mongeau, School through different channels and methods. management reflect professional opinions, of social work, UQAM, Montreal, CANADA, Results so far – Established special collaboration sometimes evidence based. These tend to Dominique Dion, Maisonneuve-Rosemont with central authorities in Mid-Norway related concentrate on efficient time scales and medical Hospital, Montreal, CANADA, Véronique to the project – 89 communities and 8 hospitals aspects of management that influence Lussier, Psychology Department, UQAM, in Mid-Norway are contacted and informed outcomes. In the context of an illness, which is Montreal, CANADA about the project – Agreements have been made fatal in more than 90% of people, we have with communities on bed-side learning undertaken a qualitative analysis of the Object of the study: The relief of suffering is programmes – An educational programme is experiences of 6 patients in the later stages of recognized as one of medicine’s most started in several regions, both in hospitals and lung cancer. The study used interpretative fundamental purposes. However, little is known nursing homes – Joint meetings arranged with phenomenonological analysis (IPA) of of the suffering of healthcare providers being communities on how to establish palliative beds transcribed taped semi structered interviews of confronted daily with patients at the end of in nursing homes Conclusion The quality of 6 patients with progressive lung cancer. The key their life, nor of its consequences. The aim of palliative care services in communities (and themes that were identified were: (1) our study was to explore the response of hospitals) will most likely improve by the PMU Adjustment and coping along disease pathway healthcare providers to the suffering of patients intervention as described and ‘a good death’ in (2) Person centred style of service delivery and nearing the end of life. In this communication nursing homes could be possible. staff attitude (3) Co-morbidities may be more we report results bearing on the suffering being frustrating than the cancer (4) Need health induced in the healthcare workers themselves. professionals’ emotional and physical lsuport in Methodology: Semi-structured interviews, Abstract number: 510 addition to family’s (5) Families need support recorded for later transcription, were conducted Presentation type: Poster too (6) Good communication, straight forward among healthcare providers involved in the Poster number: P91 language, matching patient’s needs (7) care of palliative patients in a teaching hospital. Organised clinical services, avoiding delays Focus-groups were also led in order to validate A Century of Palliative Care: betweeninterventions and particularly on the the emerging theory. Analysis using constant St Joseph’s Hospice 1905–2005 day (8) Proactive community nursing support comparison of cumulative data yielded initial (9) Coping with the future – different people thematic classifications which were later Mary Teresa Clarke, Chief Executive, London, have different strategies (10) Right to continue condensed and organized into conceptual GREAT BRITAIN, Christina Mason, St Joseph’s smoking (11) Spiritual support is a personal categories. Results: The chaos and helplessness Hospice, London choice As the majority of lung cancer patients associated with the ultimate phase of existence will die from their disease, listening to their are shared by the professionals and auxiliaries On January 15th 2005, St Joseph’s Hospice needs is vital for planning a lung cancer service. who care for patients nearing the end of life. celebrates its centenary; the arrival from Ireland Added constraints brought on by the healthcare of the small group of Sisters of Charity who system’s organization and management subject founded St Joseph’s. Their mission at that time healthcare providers to a level of suffering was to care for the sick and poor of Hackney, which interferes with their capacity to respond East London and initially they did this from a to the suffering of patients. Conclusions: large house that had been given to the Sisters by

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Abstract number: 512 improved, palliative care services set in such a Abstract number: 515 Presentation type: Poster way as to fit into the current model of care Presentation type: Poster Poster number: P93 provided by local health services, analgetics and Poster number: P96 other drugs, medical equipment and supplies Specialist palliative care unit in a nursing provided. In an attempt to adress some of these There is no place like home – I.V Home home – evaluation and description of a issues 10 conferences for doctors, nurses, social Therapy for Cancer Patients new model workers and heath authorities since 1997 was held . Education is also progressing well by Mali Kusha, Central District – Community Gunnhild Jakobsen, Faculty of Medicine, publishing books and guidelines with and Palliative Oncology Unit, Rishon Lezion, Trondheim, Norway, Trondheim, NORWAY, doctors and nurses recruited to the project and ISRAEL, Sara Ben-Ami, Clalit Health Services- Helge Garåsen, Chief Municipal Medical undergoing intensive training at St. Gamma’s Tel-Aviv District ISRAEL, Vicky Oz, Teva Medical Officer, Municipality of Trondheim, Hospice in Leeds. Palliative Home Care Service L AB. ISRAEL Trondheim, NORWAY, Stein Kaasa, Pain and for the terminally ill patients suffering from Palliation Research Group Norwegian University cancer was opend in Sarajevo 1998, first hospice Today patients leave hospitals quicker and sicker of Science and Technology, Faculty of Medicine, in Sarajevo in 2000, and second in Tuzla in to the community. The health care providers Trondheim, NORWAY 2003. Although a great deal has been achieved, must supply continuity of care to those patients there is a need for more effective and more in their homes. One of the treatment modalities Objective: To describe and evaluate a new broaden services for palliative care. The to cancer patients includes Intra Venous home model of palliative care as a part of an situation of shortage of same analgetics, therapy of chemotherapy, Antibiotics and T.P.N. integrated model in Norway. Background: The specialy defferent forms and concetrations of An intervention plan was developed between Palliative Medicine Unit (PMU), University oral morfin preparations should be relieved, two Clalit Health Services districts and Teva Hospital of Trondheim was established in 1994, graduate and post-graduate education in Medical Home Care as the treatment supplier in with an acute inpatient unit (12 beds), a palliative care provided. But the key goal should Israel. The aims were: To provide a safe multidisciplinary consultation team, an be to grow awareness and promote concept of alternative to hospital stay, to make it as simple outpatient unit and a teaching program for the quality of live and introduce pallaitive care as an as possible in order that the patient and family primary health care system. A joint project integral part of comprehensive health care by could participate in the care and to provide a between the PMU and the municipality of facilitating the understanding and application cost effective service. During 2003, 979 patients Trondheim has been running for the last 6 of the principles of care based on the WHO received 3,935 days of I.V treatments at their years. As a result of the experiences through a (1990) definition of palliative care. Palliative homes, 638 patients received chemotherapy randomized controlled study, a permanent treatment and care hav to be available at all treatment by infusers mostly with 5FU. 162 palliative care service has been established at stages of health care, particularly in family patients received Antibiotic treatments and 36 Havstein nursing home. Since Jan.2003 the medicine. patients received 322 day treatment of T.P.N at nursing home has assigned 12 beds for home. The home care nurse responsibilities are: palliative care. The unit is meant to be a model To assess the patient’s readiness and ability to for further establishment and planning of Abstract number: 514 receive the I.V. therapy in the home palliative care services and needs to be Presentation type: Poster environment, to connect and disconnect him to evaluated and further described. Methods: Poster number: P95 the treatments.,to provide him with relevant Descriptive medical and sosiodemographic information and written instructions about the comparison of patients dying in a special Shared responsibilities in palliative care medications and to be available by phone or palliative care unit in nursing home (n=86) and immediate visit should the need arise. Results: · patients dying in the PMU (n=192) in Ellen J. M. de Nijs, Department of Medical Increased Quality of Life as reported by patients 2002–2003. Results: Death in nursing home was Oncology, Utrecht, NETHERLANDS, Ginette M. and their families. · Increased (Higher) significant associated with higher age with a Hesselmann, UMC Utrecht, Alexander de Satisfaction of patient & family. · Increased in mean age of 76 yrs, range 45–92, versus 67 yrs, Graeff, UMC Utrecht, Saskia C.C.M. Teunissen, the number of patient receiving I.V. home care range 29–91 (p<0.01). Furthermore, the UMC Utrecht Services Decrease of 86% in cost of treatment. existence of non professional health care In this presentation, we will present the providers, i.e. living with spouse, was also Of all the patients treated on the Department of significant improvement in these areas that significant different with 24% of patients dying Medical Oncology of the University Medical were achieved in the joint project with Tel-Aviv in a nursing home not living with spouse as centre of Utrecht fifty percent are incurable ill. & Central District of Clalit Health Services and compared to 49% in the PMU (p<0.01). Patients A lack of knowledge and competencies on the Teva Medical Home Care. dying in nursing home had a significant longer principles of symptom management and good institutional time, mean time 46 days range palliatieve care was obvious. For this reason we 2–207, as compared to patients dying in the developed a strategic plan and an educational Abstract number: 516 PMU with a mean of 15 days, range 1–71 days program to improve symptom management Presentation type: Poster (p<0.01). Conclusion: As an integrated model and overall quality of palliative care. Semi- Poster number: P97 this gives the patient an opportunity to stay at structured interviews and a survey among home for as long as possible, and when needed medical doctors, oncology nurses and The Palliative care in France: a Palliative acute care is offered at the PMU. The patients paramedics have been done. Improvement of step moving dying in a nursing home stayed there for a the multidisciplinary collaboration between the longer time, where older and had less support outpatient-clinic, day-care centre and clinical Laurent CHASSIGNOL, ardeche, PRIVAS, from spouse. Further development of such ward showed to be the most important issue. FRANCE, LE DIVENAH Aude, Project leader of models is necessary to meet the care of seriously The multidimensional approach of the palliatif Care, DHOS, Ministry for Health, Paris, ill patients suffering of patients and the decision making FRANCE process are other priorities. The main operationalization of the strategic plan is the That of way traversed since Circular LAROQUE, Abstract number: 513 structural involvement of the clinical nurse 26 August 1986, which recommended the Presentation type: Poster specialist in direct and indirect care and the assistance with dying. The development of the Poster number: P94 introduction of senior nurses. The educational palliative care intensified under the impulse of program stimulates discussion and creates the the Law of 9 June 1999, launched and ORGANISATION OF PALLIATIVE CARE IN opportunity for interdisciplinary exchange of supported by Dr. Bernard KOUCHNER, then BOSNIA AND HERZEGOVINA knowledge and competencies (e.g. what is minister for the health. It aims at guaranteeing needed to give good terminal care; what does it the access to the palliative care and an Nermina Obralic, Oncology Institut, Sarajevo mean to be responsible in palliative care). accompaniment for any person whose state Canton, BOSNIA & HERZEGOVI Increased knowledge and changed attitude requires it. In order to support the application resulted in more interaction between disciplines of this law, a first triennial plan was put in ?uvre Palliative care is important partof of healthcare about topics in palliatieve care and a of 1999 to 2001, primarily stressing the world-wide. Nowhere is this more evident than multidimensional approach of complex development of the palliative care in in wor-torn Bosnia and Herzegovina. Although questions. Available consensus guidelines are establishments. The circular relating to the palliative care for the terminaly ill cancer better applied, principles of palliative care are organization of the palliative Care of 19 patient had started in the mid-eighties in leading in the development of patient care- February 2002 stresses the missions and the Sarajevo, or even earlier in other European plans. Evaluation of the outcome of symptom procedure of the countries, Bosnia, in the midst of a war management is the main topic of 1992–1995, had been prevented from multidisciplinary research. developing this area of care. Addressing palliative care needs of patients and their families the philosophy of palliative care had to be introduced, education in palliative care

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Abstract number: 517 and the Ministry of Health strongly contributed caregivers working in all sectors of health care: Presentation type: Poster to create legal and financial background for general practise, homecare, hospitals, nursing Poster number: P98 palliative care. Results In 2004 a new national and elderly homes, hospices. Their main task is strategy and a financial demonstration project to advise and support primary caregivers. In the Palliatif process: a new legislative concept was created. Minimum standards and the mid-eastern part of the Netherlands, four in France hospice code serves as a legal background for palliative care teams are active, each in his own the care. A two year pilot model extends local network / region. They are connected to Philippe COLOMBAT, indre et loire, TOURS, palliative care in the country. The policy and supported by the Comprehensive Cancer FRANCE, CHASSIGNOL Laurent, CH VALS conference made recommendations for the Centre East. In this study, regional and inter- D’ARDECHE, PRIVAS, FRANCE, D’HEROUVILLE next five years to make palliative care an team variations in use of palliative care Daniel, Past president SFAP, PARIS, FRANCE, integrate part of national health services consultation was evaluated. Methods: DELBEQUE Henry, president commitee available for terminally ill patients. A national Information concerning all consultations were national follow up palliative care, PARIS, body, the National Palliative Council is to be set registered on a registration form developed by FRANCE, LE DIVENAH Aude, project leader of up in 2005 with delegates of policy makers, the Dutch Association of Comprehensive the palliatif care, minitry for Health, Paris, health authorities, universities and palliative Cancer Centres (VIKC). Results: In the first six FRANCE care providers, which is to create a national months of 2004, 756 consultations were palliative plan for the next five years. registered. Per team 109 to 326 consultations. Since 1980, many palliative care units, palliative Conclusion We hope that palliative care policy 74% of all consultations came from general care teams and palliative care networks have development will lead to provision of palliative practitioners, whereas 31% came from hospital been created in France. However patients die in care services available for half of those in need caregivers. These data varied considerably all types of institutions and a good palliative with a 70% covering from NHS by 2009. between teams: from 23% to 78% for general care is a necessary whatever the care unit where practitioners and from 3% to 64% for hospital they die. So the concept of palliative process caregivers. Almost ninety percent of all patients was developed. It was postulated that a better Abstract number: 519 were diagnosed with cancer, almost 3% had a quality of life of hospital staff could improve Presentation type: Poster heart failure, 3% a neurological disorder. Almost management of end of life patients and their Poster number: P100 60% of all patients were at home during the family. This concept of participative consultation, 19% stayed in hospital, 4% in a management associates five mains points: 1) Pharmacist prescribing exploring new hospice and 6% in a nursing or elderly home. Internal process of formation for the staff of the territories in Palliative Care These numbers differed between teams, for care units which allows to educative each example in one team 90% of all patients stayed members of the staff, 2) Elaboration of team Margaret Hook, St. Peter’s Hospice, Bristol, at home and in another team 60% of patients 9 APRIL project after assessment of caring dysfunctions GREAT BRITAIN were hospitalised. The mean age of patients was in the care unit, propositions are made by small 65 in all teams. Conclusion: Variation in groups to optimise the management of the The health service in the United Kingdom is characteristics of consultations between local team consequently of the patient, 3) Promotion moving traditional boundaries of professional consultation teams and regions may be of staff meetings where are discuted with all responsibilities. Prescribing has been the explained by different development stages and members of the team, the psychological and domain of doctors and dentists for many years. origins of the teams. More streamlining of the ethical problems of the patients or their family, The extension of prescribing to include other working processes of the teams is necessary to SATURDAY 4) Support of hospital staff with their suffering healthcare professionals is a key part of the assure that each caregiver (and thereby each either as individual support, either as debriefing government’s agenda to modernise the patient) can account on the same kind of or regular meetings, 5) Resort to specialized National Health Service (NHS). It is part of their support from specialised teams in each local structures such as palliative care units, pain plan to design the NHS around the needs of the region. units, psychologists. A first circular was patient. There are now two categories of published by Health Ministry in February 2002. prescribers: a) Independent prescribers,a doctor A more detailed circular has just been published or dentist, are responsible for the initial patient Abstract number: 521 on next June. This model could be generalized assessment and deciding a treatment plan. b) Presentation type: Poster in other countries. Supplementary prescribers, a registered nurse, Poster number: P102 registered midwife or registered pharmacist are authorised to prescribe for patients whose LAST DAYS OF LIFE: SETTINGS Abstract number: 518 condition had been diagnosed or assessed by an AND SERVICES Presentation type: Poster independent prescriber. Their prescribing is Poster number: P99 within an agreed clinical management plan Natasa Milicevic, Oncology Dept., Belgrade, Qualifying as a supplementary prescribing SERBIA AND MONTENEGRO, Jasmina Gutovic, Palliative care policy development in pharmacist has extended the care I can provide Medical Center, Belgrade, SERBIA AND Hungary 1991–2005 patients but the challenge is to introduce the MONTENEGRO new way of working in the palliative care setting Katalin Muszbek, Hungarian Hospice to improve patient experience and strengthen The basic motivation for good palliative cancer Foundation, Budapest, HUNGARY, Ágnes Ruzsa, the clinical team. Palliative care should embrace care is to obtain the best possible quality of life Zalaegerszeg County Hospital, Zalaegerszeg, this change and develop new ways of working for the patients and their family under the HUNGARY, Katalin Hegedus, Semmelweis to maximise expertise. My story helps to start circumstances and to help the patients to die University, Budapest, HUNGARY, Melinda the debate and covers the following questions: with dignity. The place were terminally ill Szöllosi, Hungarian Hospice Foundation, ● Who should become supplementary cancer patients spend their last days can Budapest, HUNGARY, Mary Callaway, Open prescribers ● Is it worth the effort for the significantly influence the quality of life and it Society Institute New York, New York, U. individual and the organisation ● What are the depends on the organization of palliative care STATES implications ● What are the benefits? services in the particular country. Aim: To explore the opinion of medical staff, doctors Objectives In Hungary hospice groups provide and nurses, regarding the best setting in which palliative care for cancer patients since 1991. Abstract number: 520 terminally ill cancer patients should be cared Though Hungary leads WHO cancer death Presentation type: Poster for. Method: All doctors (n=131) and nurses statistics and death and dying belongs to the Poster number: P101 (n=223) employed by Medical Center taboos palliative care is not recognised in the ‘Bezanijska kosa’ were asked to answer a country. 80% of the people die in poor REGIONAL AND INTER-TEAM VARIATIONS number of questions as a part of the larger conditioned hospitals without an adequate IN THE USE OF PALLIATIVE CARE questionnaire about palliative care. Beside symptom control. Legal background was CONSULTATION IN THE MID-EASTERN personal data (sex, age, occupation, religious inefficient for palliative care. It was provided PART OF THE NETHERLANDS belief) one of the questions was about setting mainly by NGOs that constantly need to raise where the palliative care should be offered to funds, while the National Health Insurance Cilia Galesloot, Palliative Care, Nijmegen, the terminally ill cancer patients. Results: 82 Fund made only limited contribution. Methods NETHERLANDS, Katja Aben, Comprehensive doctors (62,59%) and 121 nurses (54,26%) From 2001 media campaign helped to draw the Cancer Centre East, Nijmegen, NETHERLANDS, completed the questionnaire. The answers were attention on dying people and hospice Rob Krol, Comprehensive Cancer Centre East, as follows: 68 (33,5 %) consider that patient’s awareness increased enormously. An Nijmegen, NETHERLANDS, Stans Verhagen, home as the best place for terminal care, for 8 interpellation in the parliament raised the Palliative care team Nijmegen, Nijmegen, (3,9%) of them it is a regular hospital ward, for problem of human dignity at the end of life NETHERLANDS, Jobje Haaijman, Palliative care 32 (15,8 %) it is a palliative care unit and 68 care. A policy conference was organised in 2004 team Nijmegen, Nijmegen, NETHERLANDS (33,5 %) think that hospice can manage these for the integration of palliative care into the patients in the best way. Among medical staff national health services. Due to an active lobby Background: Palliative care teams are relatively members 27 (13,3%) offered more than one of the past years the National Insurance Fund new in the Netherlands. They are directed to answer to this particular question. Correlation

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of these answers to sex, age, occupation and Kongsberg, Norway, Borhaug E, Blefjell sykehus subjectivity must remain an important issue in faith will be presented in detail at the Congress. Kongsberg, Nurse department, Kongsberg, all stages of the disease. Thanks to the approach Conclusion: In the country where palliative Norway based on ‘simultaneous care’, the hospice in care is not recognized as the part of the care for Forlimpopoli has the shortest mean terminally ill cancer patients and where there Problem: We report a pilot project to improve hospitalization time in the Emilia-Romagna are no services specialized for this care, the the treatment of patients in a rural region in Region (12.6 days vs. regional mean of 18.9 medical staff opinion concerning the place South Norway. Several problems exist in days) and the highest rate of hospice discharges where the patients should spend the last days of palliative care: Delayed or poor treatment of (54.9% vs. regional mean of 39.6%). life can be used for planning this kind of symptoms, delayed contact with specialists, services. Key words: Palliative cancer care, poor communication between different parts of settings and services, terminal care. the health system, unnecessary hospitalisation Abstract number: 525 and others. In a rural area there exist also Presentation type: Poster geographic problems. Poster number: P106 Abstract number: 522 Methods: To improve palliative care in the Presentation type: Poster Kongsberg region, several approaches were PLACE OF DEATH OF A POPULATION OF Poster number: P103 used: (1) Seminars for nurses, physicians and 2539 PATIENTS OF THE PROGRAM OF other health professionals in pain and symptom PALLIATIVE CARE OF CUDECA The integrated development of the treatment (2) “Specialists follow patients”: FOUNDATION, SPAIN. complex hospice–palliative care in Anesthesiologists and Surgeons visit and treat inpatient and home care in Hungary – The patients at home and in the hospice instead of RAFAEL TRUJILLO, PALLIATIVE CARE, pilot program of the National Health patients have to travel to the hospital (3) MALAGA, SPAIN, Noelia Morgado, Insurance Fund Clinical records including Symptom Scores FOUNDATION CUDECA.www.cudeca.org, follow patients regardless where the treatment MALAGA, SPAIN, Antonio Ortega, Csaba Dózsa, Deputy director general for health happens (at home, hospice, hospital, FOUNDATION CUDECA.www.cudeca.org, policy and care, Budapest, HUNGARY, Borcsek outpatients clinic). (4) Communal nurse MALAGA, SPAIN, Elisa Romero, FOUNDATION Barbara, National Health Insurance Fund, specialists coordinate psychosocial help and CUDECA.www.cudeca.org, MALAGA, SPAIN, Budapest, HUNGARY, Morvai Tünde, National somatic treatment being contact persons and Marisa Martín, FOUNDATION Health Insurance Fund, Budapest, HUNGARY, confidants for patients (5) A interdisciplinary CUDECA.www.cudeca.org, MALAGA, SPAIN Varga Judit, National Health Insurance Fund, team consisting of nurses (hospital, hospice, Budapest, HUNGARY home care, oncologic clinic), physicians and Objective: One of the most important quality of priest has been build up to coordinate life issues in a program of palliative care is to Obj:In May 2004 the National Health Insurance treatment. achieve that the patients (pts) dies in their Fund (NHIF) in conjunction with the Ministry Results: It was possible to improve quality of life homes. That is why we decided to analyze in of Health and the Ministry of Finance after and reduce hospitalization of palliative patients. our database, which includes 2539 patients, consultations with the professional associations We present some data indicating positive effects where they had died. Methods: The data of invited applications for the integrated of the pilot project. 2539 patients were processed with the statistical development of the complex hospice–palliative program SPSS 11.0, where it appeared codified care. This tender was the first step of a two-year the place of death of the patients on the pilot program started in September 2004 in Abstract number: 524 following way; Home, UPC (units of palliative order to expand this essential provision-form in Presentation type: Poster care). Hospital (other medical departments with Hungary.Meth:The accepted candidates both Poster number: P105 no units of palliative care), Residence (with no home care providers and hospitals obtain an units of palliative care), Others. Results: HOME additional reimbursement for the Forlì Palliative Care Unit: report of the :1950 pts (76,8%), UPC:77pts (3 %), hospice–palliative provision. The first year’s activity HOSPITAL:424pts (16,7%), hospice–palliative care providers have to meet RESIDENCE:68pts(2,7%), OTHERS:20pts(0.8%) special professional and contractual Caterina Modonesi, Forlimpopoli, ITALY, Conclusions: –The majority of our patients, 76.8 requirements: elaborated professional and Stefania Derni, Unità di Cure Palliative – %, died in their homes. –It is a very important financial plans, references, infrastructural, Hospice, Forlimpopoli, ITALY, Laura Fabbri, quality of life issue in palliative care, as we personal and material conditions and quality Unità di Cure Palliative – Hospice, Forlimpopoli, achieved the patient’s wishes, to die with their management. The main elements of the ITALY, Francesca Martini, Unità di Cure families and in their homes. –It supposes a very monitoring are the professional and operational Palliative – Hospice, Forlimpopoli, ITALY, Marco important cost saving to the National Health indicator-system, biannual reports and process Maltoni, Unità di Cure Palliative – Hospice, System, since long stays in hospital are avoided. control. The NHIF stipulated the integrated form Forlimpopoli, ITALY of the provision: in-patient and home care providers need to operate in intensive The Palliative Care Unit of the Department of Abstract number: 526 cooperation with each other. Res:The NHIF Medical Oncology of Pierantoni Hospital in Presentation type: Poster determined the limits of the so-called hospice- Forlì runs the palliative care network Poster number: P107 days for the home care providers and the comprising Home Care Service, Day Hospital number of the hospice-beds for hospitals. The and ‘Valerio Grassi’ Hospice. The Hospice began Home Care for the Dying – Results of an hospitals had to convert operating beds into operating in October 2002 and has 10 in-patient exploratory study in NRW / Germany hospice-beds because this pilot program has facilities. It is seen as a trait d?union between close connection with the aim of the restructure hospital and district services for the clinical and Michael EWERS, Fachbereich 11 – School of of the health care system. The experiences of the organizational management of terminally ill Social Work, München, GERMANY two-year pilot period contribute the cancer patients.In the first 12 months of its development of the financial conditions and the activity (1/1/2003–31/12/2003), the hospice This presentation reports on a three year admission of further provision forms.Concl:In registered 312 admissions for a total of 247 evaluation study completed in March 2003 order to stabilize the hospice–palliative care patients hospitalized, of whom 53% (130) were investigating the structures, user and service system the NHIF has to create supporting males and 47% (117) were females. Median age profiles and performance of 16 palliative financial environment that continuously was 68 years (range 27–96 years). 42% (132) of nursing home care services in North-Rhine follows the costs of the program through patients were admitted from home, 24% (75) Westfalia, Germany. After outlining the scope flexible financial techniques. The aim of the were referred from the Department of and design of the study, the presentation Hungarian pilot is to establish a complex, Oncology, 29% (90) came from other hospital focuses on the user and service profiles and integrated system for the hospice–palliative care departments, and 5% (15) arrived from private, performance documented within this study, by a hospital-based home care provision. The residential or long-term clinics. The Health and questioning how palliative nursing home care long term plans intend to reach the entire Social Services (HSS) involved were 82% (255) services are designed to meet users demands. provision and to improve equity and availability. Forlì, 17% (52) HSS in the region of Emilia- The findings and analysis presented here aim to Romagna (ER), and 1% (5) outside the region. provide an insight view of the current situation The mean number of hospitalization days was of palliative nursing home care services, the Abstract number: 523 12, and of 312 hospice discharges, 36% of organizational obstacles which they need to Presentation type: Poster patients went home, 8% were referred to overcome and the complex dynamics at play in Poster number: P104 residential or long-term facilities and 8% were working with the (potential) users demands. moved to hospital departments. Whilst our Challenges are highlighted in the hope, that Improving palliative care in a rural region intentional diversification of the typology of understanding of the issues palliative nursing in South Norway: a pilot project patients admitted prevents the hospice from home care services face is increased and being identified as a place exclusively designed appropriate action is taken to develop services Gernot Ernst, Kongsberg, Norway, Aaker K, for patients in the terminal stages of disease, it which are both efficient and designed to meet Kommune helse tjeneste, Kongsberg Kommune, serves to reiterate the concept that patient the needs of the Dying and their families.

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Abstract number: 527 able to identify all the areas of the QoL: the is obtained, participants will receive the Presentation type: Poster average time of administration of the questionnaires. The project is financially Poster number: P108 instrument was 27 minutes (min.10, max. 70). supported by the Danish Cancer Society. The patients processed 110 subject matters Quality of life after radical cystectomy. correlated to the QoL, which were grouped into An evidence-based analysis of 7 general areas. For each area, the average level Abstract number: 530 published reports of functioning, the average weight and the Presentation type: Poster product of the functioning multiplied by the Poster number: P111 Åsa Månsson, Department of Nursing, Lund, weight were calculated. The weights assigned SWEDEN, Elmar W Gerharz, Department of and the levels of functioning are referred to a The Lifelines Project – a multiprofessional Urology, Julius Maximilians University Medical scale from 0 to 100. These data give an approach to creative care and School, Wurzburg, GERMANY, Wiking indication of the impact of each area on the communication which can promote Månsson, Department of Urology, University of overall quality of life of the patients: the higher quality of life in palliative care Lund, Lund, SWEDEN the product, the higher the contribution of that area is in improving the quality of life. The area Helena Bridgman, Salisbury Hospice, Salisbury, It has been assumed that new methods for which seems to have the biggest impact on the Wiltshire, GREAT BRITAIN, David Haworth, urinary tract reconstruction (continent quality of life is the one related to the Artistic Director, Forest Forge Theatre Company, cutaneous diversion; CUD and orthotopic communication aspects. The psychometry data Ringwood, Hampshire, GREAT BRITAIN, Emma bladder substitution; OBS) are superior to the indicates that the patients were good judges of Ryder Richardson, Lifelines Conference Co- standard ileal conduit (IC) in improving quality their own QoL and that their judgements were ordinator, Salisbury Hospice, Salisbury, of life after cystectomy for bladder cancer. reliable. Basing on a biomedic model of illness, Wiltshire, GREAT BRITAIN, Nikki Campbell Objective: The aim was to critically examine it is often assumed that the Qol inevitably Jones, Peter Gillam Support Centre, Salisbury published reports to find out if there is any worsens by degrees as the end approaches; in Hospice, Salisbury, Wiltshire, GREAT BRITAIN, evidence that CUD and OBS provide better our study, despite the fact that the patients were Sarah Newman, Lifelines Administrator, quality of life than IC. Method: A Medline in the terminal phase of their life and aware of Salisbury Hospice, Salisbury, Wiltshire, GREAT search using the terms ‘bladder cancer’, being so, many patients showed a good QoL. BRITAIN ‘cystectomy’, ‘urinary diversion’ and ‘quality of The individual evaluation of the patients’ QoL life’ was performed. Retrieved publications were must take on a greater importance in palliative Clinical governance in specialist palliative care assigned levels of evidence according to the care. involves a number of processes, which can system proposed by NICE (National Institute for measure the effectiveness of the patient Clinical Excellence) in UK based upon study experience. One of the goals of care is to 9 APRIL design (prospective, retrospective), number of Abstract number: 529 achieve the best quality of life for people with patients enrolled, if the cohort consisted of all Presentation type: Poster life-threatening illnesses. Quality of life is easy patients available or not, type of assessment tool Poster number: P110 to say, hard to define and difficult to evaluate or and its psychometric properties. Results: research with rigour within the context of Twentyfive studies met the criteria. Many of Physical and psycho-social problems modern healthcare. Modern medicine has them had urologists only as authors. Only 3 in female breast cancer survivors: increased life expectancy for many people with studies were prospective, comparing all three Focus on chronic/long-term pain. An a life-limiting illness but does living longer on SATURDAY methods of reconstruction. In 9 studies ad hoc epidemiological study its own contribute to the individual’s quality of questionnaires were used. There was no life? ‘Putting life into days rather than just days randomized controlled trial. Three studies met Vera Peuckmann, Multidisciplinary Pain Center, into life – releasing the creative spirit’ marked the criteria for level 2 evidence, the rest being of 7612, Copenhagen, DENMARK, Mogens the start of the Lifelines Project, a collaboration level 3 evidence. Of the 8 studies which Grønvold, Department of Palliative Medicine, between palliative care staff, users, a theatre compared OBS and IC, only one, a retrospective University Hospital Bispebjerg, Copenhagen, company, and R & D Department at Salisbury study, showed superiority for OBS. No DENMARK, Peer Christiansen, Department of Hospital. The setting up of the project was differences were found in the other studies and Surgery L, Aarhus University Hospital, Aarhus, presented at the EAPC 6th Annual Congress. this was true also for the 9 studies which DENMARK, Per Sjøgren, Multidisciplinary Pain Evaluation of the first three years has led to the compared CUD and IC, the 5 studies comparing Center, University Hospital Rigshospitalet, development of a toolkit for introducing and OBS, CUD and IC and the 3 studies which Department 7612, Copenhagen, DENMARK, sustaining creative arts activities. The next compared OBS and CUD. Conclusion: The Jørgen Eriksen, Multidisciplinary Pain Center, phase of the Lifelines Project relates to scientific quality of the published literature on University Hospital Rigshospitalet, Department implementation of the Supportive and quality of life after radical cystectomy is rather 7612, Copenhagen, DENMARK Palliative Care IOG (2004). It will produce a low and flaws in patient selection and professional video of The Great Escape to use as methodology are common. Published evidence Recent research found a considerable high an advanced communication skills training tool does not support advantage of one type of prevalence of chronic/long-term pain following for health care professionals. It will also deliver reconstruction over the others with regard to breast cancer surgery, ranging between 12.7% a two year training programme of interactive quality of life. and 65%. However, to our knowledge there are drama to a network of hospices and provide an no representative epidemiological studies that annual forum for participants in the project and have identified prevalence rates of chronic pain other interested parties to share learning and Abstract number: 528 and associated conditions in breast cancer experiences. Crucially, it will be supported by Presentation type: Poster survivors. Aim of the study: The aims of the an independent researcher to measure the Poster number: P109 study are to epidemiologically investigate impact of creative care on the patient chronic pain and associated physical and experience Progress on this project will be Individual quality of life evaluation in psychosocial conditions in a representative included in the presentation. palliative care: experience with the population of female breast cancer survivors at SEIQoL-DW least five years after breast cancer surgery. Methods: 2000 Women at the age of 18 years or Abstract number: 531 Carlo Peruselli, Palliative Care Unit / Oncology older who have survived breast cancer surgery Presentation type: Poster Dept., Biella, ITALY, Giaretto Lorena, Palliative for at least five years have been included. Poster number: P112 Care Unit, Biella, ITALY, Grubich Sergio, Prevalence rates of chronic pain and Palliative Care Unit, Biella, ITALY psychosocial complications will be determined Nutrition as a quality of life Issue in through questionnaires and compared to a advanced cancer and palliative care A complete Quality of Life (QoL) evaluation in sociodemographically matching Danish female patients: Perspectives of health terminally ill patients should include an population obtained through the 2000 Danish professionals working in cancer and assessment which respects the personal values Health and Morbidity Survey. Hypotheses: palliative care of each individual, without imposing a system Women who have survived breast cancer of values predetermined externally. SEIQoL-DW surgery for at least 5 years experience a higher Tessa Aston, Palliative care Team, Northallerton, is an instrument to evaluate individual QoL, prevalence of long-term/chronic pain, reduced GREAT BRITAIN developed along these guidelines, and measure work ability and daily function as well as self- how the patient is able to manage the rated health as compared to a Introduction Malnutrition is associated with important areas of his life, which he himself has sociodemographically matching Danish female many deleterious effects and distressing defined. We used an Italian version of the population. Status of the study / September symptoms which undoubtedly reduce quality of SEIQoL-DW, in a sample of 24 advanced cancer 2004: 10,462 women met the inclusion criteria life of cancer and palliative care patients. patients (10 males, 14 females), aged between out of which 2000 have been selected and Prevalence data for weight loss and anorexia 37 and 82, with an average K.P.S. of 66.2 randomly sampled as described. Participants varies widely in advanced cancer patients in the (min.30, max.90). 54.1% of the patients were in will be contacted shortly in order to obtain UK. These variations reflect factors including therapy with strong opioids. 22 patients were informed consent. As soon as informed consent lack of standardised assessment for patients,

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patients at various stages of disease and Introduction Patients with cancer often suffer each profession have been utilised and co- treatment inconsistencies. Aims of this study from a loss in quality of life (QoL). In ordinated to provide effective screening and were to identify and better understand relevant combination with the regularly standard treatment, which demonstrates true holistic issues affecting the management of nutrition in therapy, complementary care could increase the service provision. Conclusion: Institutional advanced cancer and palliative care patients by well-being. This study aims to determine the management of CRF is minimal at present exploring the views of health care professionals effects of facial massage relaxation (FMR) on the (Miller and Kearney, 2002), however this working in this specialist field. Method Mixed quality of life of patients with cancer, and to research based multiprofessional service qualitative research methods used consisting of compare the effects for patients from in- and development will facilitate the management of a focus group and in-depth interviews to collect out-patient units of a cancer clinic. Methods this distressing and debilitating symptom. The information from clinical nurse specialists, The study has been carried out at an out-patient AIFC has identified this project as a unique dietitians, consultants in Chemotherapy Unit and two clinical units, initiative in cancer management. oncology/haematology and GPs. Discussion Radiotherapy and Palliative Care and Symptom The poster will report on the key issues Control Unit. The study is a randomised- emerging from this study including health controlled trial with a control group receiving Abstract number: 535 professionals’ levels of awareness of nutrition no FMR and an experimental group receiving Presentation type: Poster interventions in palliative care; how health two treatments of FMR. Patients from both Poster number: P116 professionals differed in the relative importance groups completed a pre- and after measurement they placed nutrition. The study suggests this is questionnaire about QoL. The questionnaires THE INFLUENCE ONCOLOGICAL THERAPY influenced by: ·awareness of evidence to were composed of standardised instruments FOR QUALITY OF LIFE FOR PATIENTS support nutrition interventions in palliative measuring several aspects of QoL and the WITH CERVICAL AND OVARIAN CANCER care particularly rehabilitation strategies physical and mental state. Nurses of the unit ·understanding roles of other health completed the biographical and medical data. Eleonora Mess, Department of Nursing professionals including dietitians and their Results At both clinical units together, 32 Palliative Care, Wroclaw, POLAND, Aleksandra contribution to multidisciplinary teams patients were included in the control as well as Afa-Zajc, Public Health Medical University of ·protocols that are effective in identifying the experimental group. At the out-patient unit Wroclaw, Wroclaw, POLAND, Slawomir Pawel patients at risk of malnutrition ·attention given 18 patients were included in the control and 20 Wozniak, Palliative Care Clinic and Home by health professionals to manage the needs of in the experimental group. Both questionnaires Hospice, Wroclaw, POLAND, Wojciech Leppert, patients and their carers, managing were completed by 49 hospitalised patients Chair of Palliative Medicine, Poznan, POLAND psychosocial symptoms regardless of (77%; 23 control/26 experimental) and 30 out- physiological improvement. These issues give patients (80%; 13 control/17 experimental). The INTRODUCTION & OBJECTIVES: Measuring rise to many implications at a local level to FMR has been appreciated by the participants, quality of life in patients (pts) with influence health professionals decisions so that as indicated by the average school mark of 8.5 gynaecological cancer (GC) has a great more timely and appropriate nutrition strategies (range 1–10). Variance analysis shows that the importance. The level of pts quality of life may occur. experimental out-patient group decreased in depends not only on physical status, but other angry feelings. On the clinical units pain is factors play important role like coping decreased more in the experimental group and mechanisms, self-respect, good family relations, Abstract number: 532 they perceived their joy of life retrospectively to support from friends and medical staff, Presentation type: Poster be improved. Conclusions FMR is highly meaning of life and spiritual values. MATERIAL Poster number: P113 appreciated by cancer patients. It improves the & METHODS :This paper assesses QOL for 33 QoL of hospitalised patients with regard to pain pts with GC (23 ovarian cancer – group A and An analysis of palliative rehabilitation and joy of life, and decreases feelings of anger 10 with cervical cancer – group B) before, needs in Chiba Cancer Centre for the out-patients. during and after oncological therapy, treated in University Hospital in Wroclaw. In Group A, all Paul Kazunari Abe, Rehabilitation, Chiba City, pts undergoing surgery and chemotherapy JAPAN Abstract number: 534 (CTH), in group B all pts were after Presentation type: Poster brachytherapy, 20% of them undergone CTH Introduction: We study the impact of palliative Poster number: P115 and 90% surgery. Assessment was made using: cancer rehabilitation which we have the Rotterdam Symptom Checklist, Edmonton experienced for nine years at Chiba Cancer A Multiprofessional Approach to The Symptom Assessment System, Depression Zung Centre have largely focused on the reviews and Management of Cancer Related Fatigue Scale and the new questionnaire invented by interpretations of needs analysis as an sample of authors. Results: Pts during and after CHT Japanese situation about palliative Anne Finn, Palliative Care Team, Belfast, GREAT reported worse QOL then pts during and after rehabilitation of the cancer patients. Method: BRITAIN brachytherapy. The QOL in the grope A (ovarian Subjects were analysed statistically. We gather cancer) was generally lower then for the group 900 cases at the end of March 2003. Results: Introduction: Cancer related fatigue (CRF) is a B. During the treatment the danger of There were needs of palliative cancer general weakness combined with mental or depression is increased. Cancer impairs rehabilitation in Chiba Cancer Centre. 51% of physical fatigue which can occur as a result of financial status of the pts and the family. Most the rehabilitation goals were some kind of the tumour or the cancer treatments (Sheehan, frequent psychological symptoms were: anxiety, walking, 24% increasing activities of daily living 1997). It is a nearly universal symptom, which depression, tension and nervousness. Most including transfer technique and 10% many patients perceive as the most distressing frequent physical symptoms were: fatigue, loss psychological support for the patients and 15% cancer symptom. Research now supports a non- of energy, sleeps problems, constipation and others. Conclusion: We understand there were pharmacological approach to symptom abdominal pain. Conclusions: Cancer decreases needs of palliative rehabilitation in a cancer management encompassing exercise, lifestyle QOL pts with GC. Cooperation with family center in Japan. We should expand the result of pacing etc. This multiprofessional approach is members could scientifically improve quality of our studies into our country. When this not routinely available. Method: An care. Many psychological and emotional imformation spread over the country, many institutional needs assessment reflected an problems during the treatment could be patients would have more comfortable quality urgent need to address fatigue management, avoided by involving psychologist in treatment of life in their last times. specifically in the oncology/haematology process. directorate. This necessitated the formation of a multiprofessional group of clinicians whose Abstract number: 533 aim was to design, pilot and initiate a holistic Abstract number: 536 Presentation type: Poster programme of care. Results: To date, the group Presentation type: Poster Poster number: P114 has produced objectives, standards and a Poster number: P117 screening and treatment care pathway. To raise FACIAL MASSAGE RELAXATION FOR awareness, an educational package has been Living with localised or local advanced CANCER PATIENTS developed which includes patient information prostate cancer and guidance, posters and booklets, formal staff Rianne De Gelder, Medical Oncology, education and an awareness project launch. Bente Ervik, Department of Oncology, Tromsø, Rotterdam, NETHERLANDS, Adriaan Visser, Development business plans have been NORWAY, Tone Nordoy, Departement of Helen Dowling Institute: Centre for Psycho- submitted to provide the resources required to Oncology, University Hospital of Northern- oncology, Utrecht, Netta Michilsen, Erasmus take the project forward. The group was also Norway, Tromsø, NORWAY, Tom Donnem, MC-Daniel den Hoed Cancer Center, Rotterdam one of the three finalists in the Roche Oncology Departement of Oncology, University Hospital Cora Braat, Erasmus MC-Daniel den Hoed Project of the Year Award 2004. DISCUSSION: of Northern-Norway, Tromsø, NORWAY, Cancer Center, Rotterdam, Lia Van Zuylen, The commitment and drive of the group has Kenneth Asplund, Dep. of Nursing and Health Erasmus MC-Daniel den Hoed Cancer Center, resulted in backing from the All Ireland Fatigue Sciences, University of Tromsø, Tromsø, Rotterdam Coalition (AIFC), whose remit is to champion NORWAY the proactive management of CRF. The skills of

114 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Background. The study focus on men living opportunities for dying patients to reflect on reflective diary throughout the course of the with prostatecancer where curative treatment as their lives in a meaningful manner. It has also study. This formed an integral part of the surgery or radiation therapy is not an option helped them to feel able to enter the final stage analytic process. The emerging themes clearly due to too advanced disease, high age, poor of their life with a feeling of resolution. This has demonstrated the peaks and troughs of performance status or other causes. The aim of also helped assist the grieving relative/carer in adapting to the cancer diagnosis, living their the study is to illuminate their experience of coming to terms with the patients’ death. life with cancer and its associated treatments getting the cancerdiagnosis, information given and life changes and then the emergence of by health care providers and how follow up their fingating wound which was a continual regimes either at out-patient services or at their Abstract number: 538 visual reminder of their cancer and its GP meets their needs. Method. Ten men were Presentation type: Poster progression. Through each stage of the wound’s interviewed 3 to 36 months (median 9,5 Poster number: P119 extension the participants referred to the months) after they were diagnosed. The process of adapting to the changing boundaries interviews were tape-recorded, transcribed into Health Related Quality of Life (HRQOL) of that their wound imposed on them and the text and analysed using a phenomenological- patients with cancer and a reference consequent alterations they needed to make to hermeneutic approach inspired by Ricoeur`s population in different age groups their life. Each stage of adaptation became more philosophy. The patients’ medical journals were difficult, and often more lengthy, due to the studied in order to find what information they Florien B. Van Heest, palliative care, implications this presented in the way of and their GPs where given regarding their Odoornerveen, NETHERLANDS, B. Meyboom- possible impending death. This process has disease and treatment. Results. The disease was de Jong, Department of General Medicien, been likened to a rollercoaster ride with its described as a threat to their lives. Both the Groningen, NETHERLANDS, J.E.H.M. Hoekstra- peaks and troughs and associated emotions. disease and the treatment gave sexual and Weebers, Comprehensive Cancer Centre North The results of this study will inform and urinary problems that could be perceived as Netherlands, Groningen, NETHERLANDS, R. influence delivery of care to this vulnerable threatening to their manhood. They described Otter, Comprehensive Cancer Centre North group of patients. ambivalence in how to handle the new Netherlands, Groningen, NETHERLANDS, R. situation in their lives, e.g. with openness or by Sanderman, Centre for Healthcare Research, keeping it to themselves. Despite good University of Groningen, Groningen Abstract number: 540 information at the time of diagnosis they had Presentation type: Poster many questions after discharged to home. They Object of the study HRQOL is increasingly Poster number: P121 felt alone, and because contact with the health important for (cancer) patients as many patients care system was limited many had difficulties live longer with their disease. The aim of this Psychiatric disorsders in a Palliative getting information and help concerning part of the study was to compare HRQOL of Care Unit 9 APRIL communication with their family, sexuality etc. different age groups of cancer patients with the Conclusion. The health care services should pay different age groups of a reference population Paulo MUNIZ, Scientific Department, Rio de attention to individual needs for information, from the general population. Methods The Janeiro, BRAZIL, Flávia Campos, Psychiatry and to facilitate caring conversation and Rand-36 questionnaire (a Dutch version of the Institute – UFRJ, Rio de Janeiro, BRAZIL, counselling about the disease, treatment, side SF-36) was used. Patients (6–24 months after Antonio Egídio Nardi, Psychiatry Institute – RJ effects and the prognosis. Spouses are often the diagnosis, age older than 18 yrs, no carcinoma Federal Universiti, Rio de Janeiro, BRAZIL closest every day support and should be in situ) were randomly selected from the SATURDAY involved at an early stage. It also seems population based cancer registration of our Objective: To evaluate the frequency of important to improve out-patient organisation institute. Response rate was 47% (N=2885). In psychiatric disorders in 50 impatients sample at and to establish a special nursing service. the reference population study 1063 people the Palliative Care Center of the National were included. Summarized results In older age- Cancer Institute(INCA). Method: We select 50 groups of cancer patients (65–74 yrs and 75–84 subsequent subjects refeered to the impatient Abstract number: 537 yrs) there was no difference in HRQOL unit. Psychiatric diagnoses was acessed with the Presentation type: Poster compared to the same age groups of the version 4.4 of the Mini-International Poster number: P118 reference population. In younger age-groups Neuropsychiatric Interview (MINI), a short significant differences were found for stuctured questionary designed to explore each The Significance of Celebration of Life functional status and general health evaluation of the necessary criteria for the main diagnoses Boxes in Day Therapy but not for mental health. Conclusion: The of DSM-IV, Axis I (Americam Psychiatric influence of cancer on HRQOL is related to age. Association). The parameters for exclusion was Lucy Scriven, Day Therapy, Merseyside, GREAT In our study population above the age of 65 coma, mental confusion or any incapacity to BRITAIN, Crook Pat, Willowbrook Hospice, years we did not find a difference in HRQOL understand and anwser the questionary. Results: Merseyside, GREAT BRITAIN, Fillingham, between cancer patients and a reference From the overall sample of 54 patients, four Carolyn, Willowbrook Hospice, Merseyside, population. This means that to improve were excluded due difficulties in understand the GREAT BRITAIN, Richards Emma, Willowbrook HRQOL in younger age groups concentration stantard instrument used (MINI). The sample Hospice, Merseyside, GREAT BRITAIN should be on treating or relieving the effects of was composed by 28 women(56%) and 22 the cancer diagnosis and treatment. In older age men(44%). The mean age was 53.6(Sd 13.3) Aim To give patients opportunity to reflect on groups probably HRQOL is not so much years. Twenty-three patients (46%) of the their own life and to positively affect their depending on a diagnosis and/or treatment of total(50) met the criteria for at least one of the security, significance & self worth Introduction cancer. This implies probably that aspects of all diagnoses explored by the MINI. The frequence Volunteers and staff at the hospice provide the different diseases and their effects on the of major depresion was 32% (n=16), generalized extensive pre-bereavement support to the life of the patient should be taken into anxiety 14% (n=6), panic disorder 6% (n=3), patients. When a patient dies, it has a profound consideration in an effort to achieve agoraphobia 6% (n=3), alcohol abuse 4% (n=2), effect on the other patients, volunteers and improvement of HRQOL. bulimia 4% (n=2), suicidal ideation 4% (n=2), staff. In view of this, it was decided that we manic episode 2% (n=1), obsessive-compulsive needed to openly explore the feelings of the disorders 2% (n=1), somatization 2% and other patients and also reflect on that person’s Abstract number: 539 psychotic syndromes 2%. Seven patients (14%) life. Our concern is whether or not we have Presentation type: Poster fulfilled more than one diagnoses. No patient provided the opportunity for dying patients to Poster number: P120 met the criteria for adjustment disorder. also celebrate and/or reflect on their own life. Conclusion: Comorbid psychiatic disorders are Method Patients are given an introductory letter A Phenomenological Study into the clinically significant in advanced cancer giving ideas they may be able to use to start off impact on the life of a patient with a patients, and mey alter sympton control their own project. This is followed by a fungating wound strategies as well worstening the patient´s discussion with their key worker who assesses quality of life, mostly if underdiagnosticated their thoughts around this subject. Central to Diane Laverty, Palliative Care, London, GREAT and treated. Clinical Staf in Palliative Care must this discussion is the alleviation of any fears or BRITAIN be awere and prepared for psychiatric diagnoses misconceptions, reinforcing the positive in their daily practice. aspects. They then choose what format e.g. Using an interpretative approach within the book/box/photo-album etc. and then they framework of hermeneutic phenomenology, begin to personalise it. Results Since the start of the aim of this study was to gain an the project six patients have completed their understanding of the views, perceptions and own Celebration of Life. This has varied from impact on the life of an individual with a scrapbook to C.D. compilation to personalised fungating, malignant wound. Six patients with boxes. Others have chosen to produce ‘one-off’ advanced cancer participated in an individual, pieces of work such as paintings or cards/letters unstructured interview with the researcher that have particular significance for them. where they shared their experiences. As part of Conclusion The project has provided the findings the researcher completed a

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Abstract number: 541 the care process surrounding euthanasia. Abstract number: 544 Presentation type: Poster Methods: A qualitative Grounded Theory Presentation type: Poster Poster number: P122 strategy was used. In anticipation of new Poster number: P125 Belgian legislation on euthanasia, we conducted PALLIATIVE CARE AND semi-structured interviews with 12 nurses Evaluation of the perception of PSYCHOPHARMACOLOGY: MORPHINE IN working in a palliative care setting in the Psychological Well-Being in Palliative PATIENTS ADVANCED CANCER – province of Vlaams-Brabant (Belgium). Results: Care professionals ASSESSMENT OF COGNITIVE EFFECTS Palliative care nurses believed unanimously that they have an important role in the process of Gustavo F. Rodio, Psychosocial Area, Capital ADRIAN TOOKMAN, PALLAITIVE MEDICINE, caring for a patient with a euthanasia request, a Federal – Buenos Aires, ARGENTINA, Dora LONDON, GREAT BRITAIN, Sunjeev Kamboj, role that is by no means limited to assisting the Gonzalez, Hospital Gandulfo, Lomas de University College, London, GREAT BRITAIN, physician when he is administering life- Zamora, ARGENTINA, Stella Salgueiro, Hospital Valerie Curran, University College, London, terminating drugs. Nurses’ involvement starts at Italiano de Buenos Aires, Buenos Aires, GREAT BRITAIN, Louise Jones, Edenhall Marie the moment the patient expresses a euthanasia ARGENTINA, Gabriela Boso, Hospital Churruca Curie Hospice, London, GREAT BRITAIN request and ends with supporting the patient’s – Visca, Buenos Aires, ARGENTINA, Ana relatives and healthcare colleagues after the Ottonello, Hopital Marie Currie, Buenos Aires, Aims: To assess acute effects on everyday potential life-terminating act. Nurses stressed ARGENTINA cognitive requirements of immediate release the importance of having an open mind and of morphine in patients on stable doses of long using palliative techniques in dealing with a Introduction: Psychological Well-being (ps-wb - acting opioids. Method: A double blind euthanasia request, as well participating in bieps) is a multidimensional construct that balanced cross over study: 14 patients randomly decision-making regarding euthanasia. shows the way in which a person perceives allocated to treatment order tested on 2 days no Concerning the actual act of performing his/her life – both cognitively and affectively. Its less than 7 days apart. Morphine dose euthanasia, palliative care nurses saw their role perspective is conceived as a concept within a individually calculated as usual breakthrough primarily as assisting the patient, the patient’s subject’s healthy and adaptative potentialities, dose; same percentage increase in all patients. family, and the physician by being present, more than within his/her pathological features. Patients completed cognitive assessments just even if they could not reconcile themselves Objectives: Assess the perception of before then 45 minutes after single oral dose of with actually carrying euthanasia. Conclusions: psychological well-being in palliative care morphine or placebo. Test battery: assessments Based on their professional nursing expertise professionals. Obtain data leading to the early of cognitive function (e.g. spot the word, speed and unique relationship with the patient, detection of indicators that are associated to the of comprehension, prose recall, map location, nurses participating as full members of the lack of psychological well-being. Patient and digit span, speed of processing),of alertness and interdisciplinary expert team are in a key Methods: The subjects of this study were 60 psychomotor speed, mood and pain. Analysis: position to provide valuable care to patients health care professionals that were carrying out Repeated measures ANOVA using SPSS. Results: with a euthanasia request. Palliative Care tasks both in public and/or No significant interactions for mood factors. private institution. The sample consisted of Despite not complaining of pain pre test dose, doctors, psychologists, social workers and pain relief following test dose morphine was Abstract number: 543 nurses, in a 40 year-old average. The scale M.M. significantly greater than placebo (t (13)=2.38, Presentation type: Poster Casullo bieps in adults (BIEPS-A – 2000) was p=0.033). Immediate recall of prose showed a Poster number: P124 used to evaluate the dimensions of Acceptance / trend towards interaction between condition Control, Autonomy, Relationships and Projects. and time (F(1,13)=4.366,p=0.057). Immediate ASSESSMENT OF Conclusions: Comparing the scores obtained recall of pre-treatment story unaffected but ANTAGONISM OF BUPRENORPHINE with the general population, the following recall of post-treatment story poorer after results were obtained: Within the psycho- morphine than placebo. Delayed recall of prose Monica Escher, Pain And Palliative Care Centre, social’s group 53% presented scores below showed a highly significant effect of treatment Geneva, SWITZERLAND, Jocelyne Chabert, group median score (x) Within the doctors’ but not time. In individual comparisons Geneva University Hospitals, Geneva, group 54% presented scores above the median morphine significantly impaired recall of the SWITZERLAND, Youssef Daali, Geneva Within the nurses’ group, only the 30 % have pre-drug story [F(1,13)=6.528, p=0.024] and the University Hospitals, Geneva, SWITZERLAND, presented scores below the median Various story presented post morphine [F(1,13)=13.012, Pierre Dayer, Geneva University Hospitals, hypotheses accounting for this difference will p=0.003]. No significant effects on verbal Geneva, SWITZERLAND, Jules Desmeules, be commented on. fluency, everyday attention (map and telephone Geneva University Hospitals, Geneva, searches). Reitan’s trails tests for psychomotor SWITZERLAND speed and conceptual flexibility showed Abstract number: 545 significant impairment after acute morphine. Background: buprenorphine (BUP), a semi- Presentation type: Poster Conclusion: Acute short acting morphine has a synthetic opioid, is used as an analgesic in Poster number: P126 significant effect on cognition detectable by palliative care either in patients with moderate sophisticated testing. Memory impairment may to severe renal failure or second-line for opioid EPIDEMIOLOGIC STUDY OF THE affect quality of life and end of life issue switching. It has unique pharmacologic HISTOLOGIC TYPE OF TUM0R OF A resolution in patients maintained on long characteristics: high affinity, slow dissociation POPULATION OF 2539 PATIENTS FROM acting opioids and breakthrough medication. constant, and prolonged duration of effect. The THE CUDECA FOUNDATION PROGRAM OF possibility of reversing its effects was PALLIATIVE CARE questioned. Naltrexone (NTX), a pure opioid Abstract number: 542 antagonist, has a receptor affinity 4 to 5 times RAFAEL TRUJILLO, PALLIATIVE CARE, Presentation type: Poster higher than naloxone and blocks agonist- MALAGA, SPAIN, Noelia Morgado, Poster number: P123 related effects for at least 24 hours. We assessed FOUNDATION CUDECA.www.cudeca.org, the efficacy of oral NTX in reversing the MALAGA, SPAIN, Rafael Pozo, FOUNDATION Nurses’ views on their involvement in analgesic effects of intravenous BUP. Methods: CUDECA.www.cudeca.org, MALAGA, SPAIN, euthanasia: a qualitative study in 12 healthy male volunteers participated in a José Manuel Lapeira, FOUNDATION Flanders (Belgium) randomized double-blind placebo-controlled CUDECA.www.cudeca.org, MALAGA, SPAIN, cross-over study. On three separate days they Marisa Martín, FOUNDATION Nele De Bal, Centre for Biomedical Ethics and received either 0.15 mg/70 kg BUP iv followed CUDECA.www.cudeca.org, MALAGA, SPAIN Law, Leuven, BELGIUM, Bernadette Dierckx de 45 minutes later by 50 mg NTX per os, or BUP Casterlé, Centre for Health Services and Nursing followed by placebo (PBO), or placebo followed OBJETIVES: There are very few studies in the Research, Catholic University of Leuven, by NTX. Data were collected up to 8 hours after literature, with a significant number of patients Leuven, BELGIUM, Charlotte Verpoort, Centre drug administration. Quantitative sensory (pts), that analyze the histologic type of more for Health Services and Nursing Research, testing using thermal and electrical frequents tumors in a palliative patient Catholic University of Leuven, Leuven, stimulations (Viking IV, Madison USA) was population. So, we considered the objective to BELGIUM, Chris Gastmans, Centre for performed. Pain tolerance (cold pressor test) analyze in our database, that includes 2539 Biomedical Ethics and Law, Catholic University was assessed. Results: BUP markedly increased patients, the type of more frequents tumors. of Leuven, Leuven, BELGIUM the nociceptive threshold (BUP-PBO 54% vs METHODS: The data of 2539 patients were 13% PBO-NTX; p8 h). Conclusion: naltrexone processed with the statistical program SPSS 11.0, Background: Although nurses worldwide are reverses the antinociceptive effects of where it appeared codified the diagnoses of the confronted with euthanasia requests from buprenorphine. The late reversal is probably histologic type of tumors of the patients at the patients, the views of palliative care nurses on due to delayed absorption. entrance in the program. RESULTS: Lung their involvement in the care process cancer: 626 pts (24,6%), Colorectal cancer: 330 surrounding euthanasia remain unclear. pts (13%), Head and Neck cancer: 259 pts Objectives: In-depth exploration of the views of (10,2%), Breast cancer: 208 pts (8,2%), Thyroid palliative care nurses on their involvement in and Parathyroid Cancers: 25 pts (1%),

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Pancreatic Cancer: 86 pts (3,4%), Esophageal Abstract number: 547 national specialist interest group of OTs Cancer: 52 pts (2%) , Gastric Cancer: 148 pts Presentation type: Poster working in palliative care. The response rate was (5,8%), Prostate Cancer: 122 pts (4,8%), Poster number: P130 73%. Results: SPCS have seen an increase in Urothelial and Kidney Cancers: 129 pts (5,1%), Occupational Therapy hours. However, these Ovarian Cancer: 158 pts (6,2%), Melanoma and RESEARCHING PALLIATIVE CARE are insufficient; only 22% stated they are Other Skin Cancers: 48 pts (1,9%), Soft-tissue DEVELOPMENT IN RESOURCE employed full-time within SPCS. Many others Sarcomas: 21 pts (0,8%),Acute Leukemias: 2 pts POOR SETTINGS have split clinical roles, frequently with great (0,1%), Carcinoma of Unknown Primary Site: input to SPCS – though no team membership. It 119 pts (4,7%). Conclusions: Lung cancer was Michael Wright, International Observatory on is perceived that multi-disciplinary team the most frequent cancer with a 24%. Followed End of Life Care, Lancaster, GREAT BRITAIN, colleagues have a poor understanding of by the colorectal cancer with a 14%, and head Amanda Bingley, Lancaster University, Occupational Therapy and its rehabilitative role and neck tumors with a 10%. The data of high Lancaster, GREAT BRITAIN, David Clark, in palliative care. Coupled with a lack of a frequency of lung cancer correlates well with Lancaster University, Lancaster, GREAT BRITAIN postgraduate training pathway, there is a failure the data described in the literature, since Lung in gaining clinical specialist status. OTs have a cancer is the most frequent cancer due to high Aims: The International Observatory on End of poor presence on cancer networks and are tobacco consumption. In our population there Life Care provides comparative, research-based often, instead, represented by nurses. Clinical is a high frequency of head and neck tumors, in information on palliative care development in pressures, lone working and part-time possible relation to the tobacco and alcohol the international context. Projects are currently employment are contributing factors for little consumption. being undertaken in Eastern Europe and time or interest in performing teaching and Central Asia; Africa; India; and the Middle East. research. Conclusion: OTs need increased, In many resource poor regions, access to strategic presence on regional cancer networks. Abstract number: 546 information about palliative care services may SPCS are asked to review their Occupational Presentation type: Poster be problematic due to: uneven Therapy provision and employ designated OTs. Poster number: P128 communications; patchy record-keeping; Occupational Therapy colleges/governing indigenous and Western health care systems bodies need to introduce palliative care training Bereavement research: towards to operating in tandem; varying definitions of pathways at under- and postgraduate levels. common understanding of palliative care. Methods: The Observatory methodological and ethical issues adopts a spectrum of methods to access a broad range of sources. We have developed a) criteria Abstract number: 549 Sheila Payne, Palliative & End-of-Life Care for service identification b) a template for Presentation type: Poster Research Group, Sheffield, GREAT BRITAIN, comparing epidemiological, demographic and Poster number: P132 9 APRIL David Field, University of Leicester, Leicester, health system data across countries c) a GREAT BRITAIN, David Reid, University of structure for in-depth qualitative interviews d) a PROVISION OF PALLIATIVE CARE: Sheffield, Sheffield, GREAT BRITAIN, Marilyn review method for published sources/ grey INTERFACE OF LUNG CANCER AND Relf, Education Centre, Sir Michael Sobell literature e) a template for individual country PALLIATIVE CARE SERVICES House, Oxford, GREAT BRITAIN reports f) a country database of palliative care services and educational programmes g) case Stephanie Gomm, Hospital Paliative Care Team, Background: It is widely recognised that study analysis of palliative care success stories h) SALFORD, GREAT BRITAIN, Zena Kassim, SATURDAY research involving bereaved people and services an international network of collaborating Hospital Paliative Care Team, SALFORD, GREAT for them raises complex methodological and colleagues i) a system for validation of findings BRITAIN ethical concerns. Such research is usually j) a website for dissemination (www.eolc- defined as ‘sensitive research’. Aims: This paper observatory.net). Results: Reports have so far Background: 75% of lung cancer patients will be considers the sensitive nature of bereavement been generated for a total of 53 countries. We treated by palliative interventions research and the sensibilities of ‘gate-keepers’ – have made cross-country comparisons on the only,requiring timely access to Specialist ethical review boards, professionals and following dimensions: types and numbers of Palliative Care (SPC). The role and interface of organisations working with bereaved people – palliative care services and workforce capacity; these multi-disciplinary teams (MDTs) was in allowing research access to bereavement national and professional organisations; assessed in their provision of palliative care by support services and the people using them. We education and training; opioid availability; case postal questionnaire. Method:Questionnaires draw upon our current experiences of studies and ‘success stories’; public health and were completed by lung cancer and palliative conducting in-depth organisational case studies health care system context; ethical themes. care practitioners from 15 Lung Cancer Units in five UK adult hospice based bereavement Discussion: In global and resource poor across a Cancer Network (popn.3,200,000) in support services. Research design: Five in-depth contexts, multi- method and interdisciplinary NW England. Manpower,roles,referral criteria, organisational case studies of adult bereavement approaches are essential if we are to generate MDT working and database information on services in England. Data were collected from accurate data and worthwhile analysis. palliative care were collated. Results:62% bereaved people (n=87) and bereavement Conclusion: The methodology adopted by the (42/68) response rate. Manpower:all units support workers (n=115), using focus groups Observatory provides flexible, comprehensive identified a Lead Lung Cancer Physician,but and interviews. We encountered a number of and valid ways to review palliative care services only 9 had input from a Palliative Care methodological and ethical issues in across countries. Consultant; 28 Lung Cancer Nurse Specialists conducting this research: Discussion: 1. (LCNS) and 34 Hospital Palliative Care Clinical defining what constitutes a bereavement Nurse Specialists (HPCNS). One site had no support service 2. defining when bereavement Abstract number: 548 LCNS.60% of units palliative care is shared support begins 3. recruiting bereaved people Presentation type: Poster between LCNS and HPCNS but only 20% have and determining those who do or do not use Poster number: P131 referral criteria between teams. LCNS provide services 4. observing actual support sessions, SPC on 3 sites and SPC is shared between LCNS especially one-to-one bereavement support or The role and training needs of and HPCNS on 3 sites. SPC representation at counselling 5. obtaining informed consent 6. Occupational Therapists working in Lung Cancer MDT meetings occurred in 47% of providing appropriate support for bereaved specialist palliative care in the UK. units,with 67% of LCNS and HPCNS jointly people and the researchers Conclusion: The reviewing patients. Majority of palliative care paper suggests strategies for researchers which Mark Hall, Specialist Palliative Care Team, referrals recorded by HPCNS only. In 9/15 units balances the need to protect vulnerable people Denbigh, GREAT BRITAIN LCNS make home visits and 73% refer to both with the requirements for gaining access and Community and Hospice Palliative services. The recruiting people in an ethically sensitive way. Introduction: Occupational Therapy posts have, most frequent suggestions to improve liaison in recent years, increased in specialist palliative between services were: an increase in manpower care services (SPCS) in the UK. Current of both services, in particular palliative care government documents give recommendations consultants;improve communication by on the role of the Occupational Therapist (OT) attendance at MDT meetings and patient- held in these services. Given this and the lack of any records. Conclusions: Joint palliative care previous research in charting OTs in SPCS in provision was common, however only 20% of the UK, this study is a timely contribution. teams had formal referral criteria.Clinical Objectives: What is the extent of OTs’ team liaison occurred in two thirds, but < 50% within membership SPCS? What is their level of MDT meetings. Database information on teaching, training and research involvement in referrals to palliative care by lung cancer teams palliative care? What are their links with was limited. Significant community support regional cancer networks? Method: A multi- provided by LCNS. Communication between centre study using a descriptive survey teams is paramount for seamless care requiring methodology. A postal questionnaire was sent expansion of lung cancer and palliative care to 369 OTs nationwide – all members of a workforce.

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Abstract number: 550 that have not been indexed in the major Abstract number: 553 Presentation type: Poster electronic databases (not limited to Australia; Presentation type: Poster Poster number: P133 N=410) ∑ Government documents, policy and Poster number: P136 research reports (grey literature; N=80). Access Resilience, hardiness, and coping in to the CareSearch library is available in a search International use of the Liverpool palliative care; a qualitative study of engine at www.caresearch.com.au. Results: Over integrated Care Pathway nurses’ experiences of work 2,300 items have been collected. Publication rates for conference abstracts varied from 0% to Laetitia Veerbeek, Department of Public Health, Janice Ablett, Division of Clinical Psychology, 17% in individual years. Articles published in Rotterdam, NETHERLANDS, Lia van Zuylen Liverpool, GREAT BRITAIN the major palliative care journals were variably Maureen Gambles Agnes van der Heide John indexed by journal, year and electronic Ellershaw Recently there has been increased recognition resource; overall 410 palliative care articles in of the stress that affects healthcare specialist journals were not indexed in The Liverpool integrated Care Pathway (LCP) professionals. High levels of stress and MEDLINE or EMBASE and are included. has been shown to be a useful tool in several depression have been foung in NHS staff. This CareSearch is a growing resource and work settings in the United Kingdom to structure the has an effect at both individual and continues in identifying, evaluating and delivery of care in the dying phase. A Dutch organisational levels. Yet, working in a stressful including material. Conclusion: Uncatalogued version has been used at the palliative unit of a job does not inevitably lead to physical illness research in palliative care is instantly accessible Dutch university hospital (EMC). We compared or psychological distress. In addition to through the CareSearch library, preventing loss the degree to which goals of care as defined by organisational variables, it is highly likely that of this valuable body of work. A CareSearch the LCP were achieved between the EMC and interpersonal factors have a significant role in database search is a good supplement for any two wards of a hospice in the UK (MCHL). From moderating the effects of stress. This has led to literature search in palliative care; CareSearch October 2001 to December 2003, the LCP was attempts to identify factors that buffer the should be expanded to other countries. applied to 50 EMC cancer patients. We were effects of stress and promote resilience. One able to match 40 of them with cancer patients such buffer is the concept of hardiness, which is who had the same sex and age and who died in thought to be important in influencing how Abstract number: 552 the same period (within one year) in the people cope with stressful life circumstances. In Presentation type: Poster MCHL. In both settings the initial assessment palliative care settings, levels of stress have been Poster number: P135 goals were achieved for the majority of patients found to be lower than in many other (on average 34 out of 40 for EMC patients and healthcare settings, although significant Performance status assessment in 30 out of 40 for MCHL patients). During the 24 numbers of staff do still experience palliative care settings: agreement hours preceding death more than half of the psychological distress. Again, personality between three versions of the Karnofsky patients in both settings (56% and 53% in the variables in palliative care staff have been Performance Status scale EMC and the MCHL, respectively) needed one identified as important in dealing with stress. or more interventions to achieve adequate The concept of hardiness, however, does not Amy Abernethy, Division of Medical symptom control. Symptoms during the last 24 appear to have been studied in palliative care Oncology/Department of Medicine, Durham, h seemed to be better controlled when the staff. This study used interpretative North Carolina, U. STATES, Tania Shelby-James, patient was longer on the pathway. Goals of phenomenological analysis to investigate Southern Adelaide Palliative Services, Adelaide, ‘care after death’ were achieved less frequently palliative care nurses’ perceptions of their work, AUSTRALIA, Belinda Fazekas, Southern Adelaide than goals prior to the patients’ passing away: particularly the personal characteristics helpful Palliative Services, Adelaide, AUSTRALIA, David on average for 28 EMC patients and for 29 in buffering the effects of stress and promoting Woods, North Tasmanian Palliative Services, MCHL patients. Generally, there is a high level resilience. The participants were palliative care Launceston, AUSTRALIA, David Currow, of correspondence in the percentage achieved nurses working in an integrated palliative care Southern Adelaide Palliative Services, Adelaide, between both settings, who are dedicated to team in hospital, hospice and communty AUSTRALIA palliative care. Whether this also holds for other settings. During the analysis themes emerged care settings and to what extent the LCP describing the factors that palliative care nurses Context: The gold standard Karnofsky contributes to the quality of care remains to be found helped them to cope with workplace Performance Status (KPS) scale is often criticized further investigated. stresses. In the discussion these were compared because its reference to location and indications with the concept of hardiness. Implications for for hospitalization are not consistent with many palliative care services were discussed. palliative care settings or Objectives. The Abstract number: 554 Thorne-modified KPS (TKPS) focuses on the Presentation type: Poster community setting and the Australian-modified Poster number: P137 Abstract number: 551 KPS (AKPS) blends the KPS and TKPS to Presentation type: Poster accommodate varied inpatient and community What are the problems in recruiting Poster number: P134 palliative care settings. Previous studies suggest patients in palliative care research: that the TKPS may be superior to the KPS in An observational study Caresearch: A literature and research palliative care; the AKPS has not been validated. database for palliative care Methods: Performance status was measured Nita Majethia, Academic Palliative Medicine using all three scales for participants in a large Unit, Sheffield, GREAT BRITAIN, Nisar Ahmed, David Currow, Department of Palliative & RCT in South Australia. Care occurred in a range University of Sheffield, Sheffield, GREAT Supportive Services, Adelaide, AUSTRALIA, Amy of settings. Raters were trained in each scale. BRITAIN, Janine Bestall, University of Sheffield, Abernethy, Duke University Medical Center, Survival was defined from enrollment to death. Sheffield, GREAT BRITAIN, Sheila Payne, Durham, U. STATES, Belinda Fazekas, Flinders Results: All three ratings were collected at 1600 University of Sheffield, Sheffield, GREAT University, Adelaide, AUSTRALIA, Jennifer timepoints for 275 participants over 21 months; BRITAIN, Sam Ahmedzai, University of Tieman, Flinders University, Adelaide, 251 participants died with mean survival 99 Sheffield, Sheffiield, GREAT BRITAIN AUSTRALIA days. The median score on all three scales was 60. The KPS and AKPS agreed in 87% of ratings, Background: A large study to develop a new CareSearch: A literature and research database and 80% of disagreements occurred within one palliative care screening measure is being for palliative care D Currow1, A Abernethy1,2, B level on the 11-point scales. The KPS and TKPS conducted in the UK. As part of the process of Fazekas1, J Tieman1 1Department of Palliative agreed in 76% of ratings, and 85% of recruiting patients to the study, field researchers and Supportive Services, Flinders University, disagreements occurred within one level. The observed and reported a number of problems South Australia, 2Duke University Medical AKPS and TKPS agreed in 85% of ratings, and influencing the recruitment of palliative care Center, Durham, NC, USA Background: Much 94% of all disagreements occurred within one patients.Objective: To explore the various research work in palliative care has been hard to level. The strongest level of agreement of the factors affecting the recruitment of patients locate. This creates difficulties for clinicians and AKPS with the KPS occurred in the highest receiving palliative care or specialist palliative researchers who wish to access this work. performance levels, with greatest disagreement care to a large research study.Methods: The Objective: The CareSearch project aims to in the middle levels; similar patterns were seen observational study was conducted at seven sites capture Australia’s missing palliative care with the TKPS and KPS. Spearman correlations including hospital out-patients, palliative care literature and make it available to practitioners, of KPS, TKPS and AKPS with survival were 0.297, in-patient units, day care centres and primary educators and researchers. Methods: Four 0.294 and 0.301, respectively. Face validity was care in the North Midlands (UK). Field notes on sources of missing literature were identified. greatest for the AKPS; nurses reported the AKPS issues relating to recruitment were recorded. Materials relevant to palliative care are being was easiest to use. Conclusion: The AKPS is a Results: A number of factors affected the located, evaluated and catalogued: ∑ Abstracts useful modification of the KPS that is more recruitment of patients including – gate from Australian conferences since 1980 appropriate for palliative care clinical and keeping; reluctance to sign consent form; (N=1,781) ∑ Masters and PhD theses from research settings that include multiple venues patient decision influenced by other patient’s Australian universities (N=61) ∑ Abstracts of of care. experience; interruption by family members at articles from 12 major palliative care journals the time of taking consent; death of patient

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before the interview; patient having medical Abstract number: 556 evaluation method applied, the number 0 is treatment on the day of the interview; patient Presentation type: Poster used when the patient/caregiver has no requesting the presence of their partner at the Poster number: P139 diagnosis and prognosis awareness both, 1 when time of interview; having visitors; patient awareness is limited to diagnosis, 2 when the preferring to do another activity rather than Palliative Care for Head and Neck Cancer patient/caregiver is aware of diagnosis but take part in a research study, particularly at the Patients, a challenge overestimates prognosis, 3 when awareness of day hospice and patient preferring not to poor prognosis is present with no diagnosis disclose their personal feelings.Conclusion: Quirine Ledeboer, Otorhinolaryngology and awareness, 4 when full prognosis and diagnosis Recruiting patients for palliative care research Head and Neck Surgery, Rotterdam, awareness is present. Codes 7 and 9 are used was difficult and influenced by (1) healthcare NETHERLANDS, Lilly-Ann van der Velden, respectively when no evaluation is possible and, professionals acting as a gatekeepers, (2) family Erasmus MC, Rotterdam, NETHERLANDS, code 9, when the level of awareness is doubtful. members intervening on behalf of the patient, Maarten de Boer, Erasmus MC, Rotterdam, The L.O.A.D. code has been tested in May 2004 (3) the patient receiving treatment or being too NETHERLANDS, Louw Feenstra, Erasmus MC, in a prevalence study in the 4 Hospices of ill to take part or (4) patients and their carers’ Rotterdam, NETHERLANDS, Jean Pruyn, Piedmont (Northern Italy) using a physician attitude toward research. We were unable to Institute for Health and Environmental based evaluation to assess awareness in patient explore some of the reasons for not taking part Issues/IGO, Schijf, NETHERLANDS and caregiver both. Patients with a hospice as patients do not have to provide a reason for length of stay shorter than 7 days have been refusal according to standard ethics guidelines. In the Netherlands each year 2400 patients are excluded. Results: No difficulties have been Information about these recruitment issues and diagnosed with head and neck cancer. In the reported using the L.O.A.D. code. 31 patients out the number of patients that may be expected to ErasmusMC 550 of these patients are treated. of 38 had been enrolled. Full disease awareness be recruited may be useful to other researchers Since the five-year survival of head and neck in patient and caregiver both (LOAD 44) was planning palliative care studies in the future. cancer is about 50%, caregivers should be able present in 35,38% (11). Patients were completely to give adequate support during palliative stage. aware of diagnosis and prognosis in 45,16% (14) Recent literature review shows few attention is while caregivers were in 80,65% (25). Other Abstract number: 555 paid to palliative care for head and neck results will be presented. Conclusions: The Presentation type: Poster patients. Caregivers in first line medicine have L.O.A.D. code is a research and working tool Poster number: P138 little knowledge of treatment of specific newly developed to define the level of disease symptoms these patients cope with, such as awareness in palliative care patient and caregiver Symptom Assessment Instruments – speech-, airway- and swallowing-problems. simultaneously. It can be used with any method A Systematic Review – Pitfalls Patients need systematic screening, follow-up of assessment and has shown to be quick and and Shortcomings and support. Therefore an Expert Centre of easy to apply in clinical practice. The results of 9 APRIL Palliative Care for head and neck cancer this first trial show a limited disease awareness in Norma O’Leary, Department of Palliative patients (ECPC) is developed. Because of a Hospice cancer patients in Piedmont. Medicine, Dublin, IRELAND, Eoin Tiernan, general preference to outpatient treatment of St.Vincent’s University Hospital, Dublin, palliative patients, the centre supports patients IRELAND, Declan Walsh, Harry R. Horvitz and caregivers in a home situation, aiming at Abstract number: 558 Center for Palliative Medicine, Cleveland,Ohio, consultation towards first line and short Presentation type: Poster U. STATES, Jordanka Kirkov, Harry R. Horvitz admissions when necessary. It has furthermore Poster number: P141 SATURDAY Center for Palliative Medicine, Cleveland,Ohio, set as objective a structural support of patient U. STATES, Mellar Davis, Harry R. Horvitz and family, good symptom control and specific Shared decision making as a controlled Center for Palliative Medicine, Cleveland,Ohio, information. Systematic registration of process on the basis of precise clinical data U. STATES palliative patients, consultation by a specialised and individual needs – a clinical study in nurse and screening of symptoms are necessary radiotherapy for head and neck cancer Objectives: Electronic databases provide the for structural counselling of these patients. bulk of references for systematic literature Research and education of medical employees Felix Momm, Radiotherapy, Freiburg, searches. However, it is recognised that many of the hospital could optimise the quality of the GERMANY, Gerhild Becker, University Clinic relevant articles are missed. The ‘related articles’ centre. One of the research projects is an Freiburg/Internal Medicine II, Freiburg, link in PubMed identifies articles that address ongoing study on the experience of general GERMANY, Susanne Bartelt, University Clinic similar topics quickly, but is not included in practitioners in their care of palliative head and Freiburg/Radiotherapy, Freiburg, GERMANY, guidelines for carrying out a systematic review. neck patients before start of the centre. 55 Natalja Volegova-Neher, University Clinic We wished to determine the usefulness of general practitioners, who had a patient treated Freiburg/Radiotherapy, Freiburg, GERMANY, incorporating the ‘related articles’ link in for head and neck cancer and whose patients Michael Henke, University Clinic Freiburg, PubMed as part of a systematic review. Methods: died as a result of this were included in this Freiburg, GERMANY As part of a systematic review of symptom study and asked to fill out a questionnaire on assessment instruments in cancer patients, care of their patient, communication between Background: Shared decision-making (SDM) is PubMed and EMBASE searches were undertaken first and second line and actions of both general increasingly advocated as an ideal model of using a defined search strategy. Two practitioners and the hospital. There is a treatment decision-making in the medical independent examiners screened the citations response-rate of about 70%. In this presentation encounter. Essential for SDM is that both, and a final list of relevant articles was agreed. we will present preliminary results of this study physicians and patients, share information and The references of these articles were hand- and discuss the procedure of the ECPC. take steps to build a consensus about the searched. A ‘related articles’ link search was also preferred treatment. In the model of performed on the relevant articles identified by radiotherapy for head and neck cancer we PubMed. Results: A total of 1181 citations were Abstract number: 557 recorded and investigated acute therapy side identified through the PubMed search. 10 Presentation type: Poster effects and their risk factors as a basis for patient articles met the inclusion criteria. A further 21 Poster number: P140 information and for estimating patients’ articles were identified through hand searching individual need for supportive care. Potential the references of these 10 articles. 51 articles The L.O.A.D. (Level Of Awareness benefits of a SDM model in the context of were identified through the ‘related articles’ of Disease) code for disease awareness Palliative Care are discussed. Patients and link; 43 of these articles were new. In total, 74 in palliative care cancer patients Methods: Prospectively collected data of 144 relevant articles were identified. A total of 154 and caregivers patients undergoing head and neck citations were identified through EMBASE. No radiotherapy were evaluated for acute mucosa relevant articles were identified. Conclusion: Giorgio Visca, Palliative Care Unit – Department and skin reactions. Further, weekly blood cell Only 13.5% of relevant articles were identified of Oncology, Torino, ITALY, Soro Giorgio, counts were performed. Different parameters using the original PubMed search. This would University of Turin – Department of were analyzed as risk factors for the occurrence suggest deficiencies in the indexing system for Psychology, Torino, ITALY, Barisone Monica, of mucositis grade III. Results: Median dose at articles related to symptom assessment in University of Turin – Department of occurrence of mucosa/skin reactions during PubMed. Over 5O% of all relevant articles were Psychology, Torino, ITALY, De Luca Anna, radiotherapy was 22 (mucosa)/26 (skin) Gy for identified using the ‘related articles’ link. We Palliative are Unit – San Giovanni Battista grade I, 42/46 Gy for grade II and 56/58 Gy for propose that the related articles link is a useful Hospital, Torino, ITALY grade III. Cell counts decreased during tool and should be a routine part of any radiotherapy. Individual radiosensitivity systematic review. Objective: To evaluate the L.O.A.D. (Level Of represented by early occurrence of grade II Awareness of Disease) code as a tool newly mucositis or dermatitis was the most important developed for awareness codification in risk factor for the occurrence of a mucositis palliative care cancer patients and caregivers grade III. However, decreasing blood cell counts both. Method: The L.O.A.D is a two digits code did not correlate to occurrence of mucositis where the fist is referred to the patient, the grade III. Conclusions: Clinical risk factors can second to the caregiver. Independently from the be used as a basis for individualization of

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 119 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

therapy and of supportive care in radiotherapy Abstract number: 560 the problem of long term pain opioid therapy patients and precise data about the occurrence Presentation type: Poster especially in palliative patients with of acute side effects are a valuable instrument Poster number: P144 nonmalignant pain. More over obtained results for patient information in the process of SDM, are indirect. In our research we would like to especially in the context of palliative care. Fatigue in advanced cancer: really a focus on: cognitive functioning – especially Nevertheless, even our highly precise data multidimensional phenomenon short term memory and attention, cannot predict exactly the occurrence of side psychomotor performance – eye–hand effects in the single patient. Thus, patients have Carolina C.D. van der Rijt, Medical Oncology, coordination, reaction time, muscles to be monitored closely while therapy. SDM Rotterdam, NETHERLANDS, Michael A. Echteld, coordination. Cognitive functions and needs to be a process which should be Erasmus MC, Rotterdam, NETHERLANDS, psychomotor performance in our research are controlled and if necessary corrected by the Susanne Claessen, Erasmus MC - Daniel den going to be measured with neuropsychological patient and the physician. Hoed Oncological Center, Rotterdam, tests and psychophysiological methods that has NETHERLANDS, Rianne De Wit, Erasmus MC, not been used so far and may give more Rotterdam, NETHERLANDS, Jan Passchier, unequivocal results concerning the influence of Abstract number: 559 Erasmus MC, Rotterdam, NETHERLANDS opioids on patients cognitive functioning and Presentation type: Poster psychomotor performanace. In our research the Poster number: P143 Introduction: Fatigue is one of the most followong tests and techniques are going to be frequently encountered symptoms in advanced used Experimental techniques: – psychological THE CLASSIFICATION OF APPETITE cancer with major implications for quality of tests 1. Clinical interview. 2. Visual Analog Pain LOSS: A PROSPECTIVE EVALUATION IN life. Fatigue has been described as a Scale. 3. BDI (Beck’s Depression Scale.). 4. CANCER PATIENTS multidimensional phenomenon with physical, MADRS. Montgomery and Asberg Depression affective and cognitive expressions. In palliative Rating Scale. T 5. STAI. 7. TMT. 8. Stroop. 9. Mellar Davis, MD, FCCP, care, quantitative studies on fatigue dimensions Benton. Psychophisiological methods 1. Jazz 3 – Hematology/Oncology, Cleveland, U. STATES, have not been performed in advanced cancer the device which allows to record eye Declan Walsh, MSc, FRCP, The Cleveland Clinic patients. The Multidimensional Fatigue movements during performing specific tasks. In Foundation, Cleveland, U. STATES, Tugba Inventory (MFI) is a validated psychometric our research saccades and smooth pursuit Yavuzsen, MD, The Cleveland Clinic instrument measuring the dimensions General movement are to be recorded. 2. Wacom Tablet Foundation, Cleveland, U. STATES, Bushra Fatigue (GF), Physical Fatigue (PF), Reduced – the device which allows to record force of Cheema, MD, The Cleveland Clinic Activity (RA), Reduced Motivation (RM) and touch, accuracy of drawings and time of Foundation, Cleveland, U. STATES, Abdo Mental Fatigue (MF). This study determines performing the test. After computing the raw Haddad, MD, The Cleveland Clinic Foundation, fatigue levels in cancer patients admitted for data information about patients psychomotor Cleveland, U. STATES palliative care using the MFI and assesses functioning are going to be obtained. internal consistency of the different Background Anorexia is common in cancer, dimensions. Methods: Fatigue was measured which reduces quality of life. Characteristics of using the MFI in 94 advanced cancer patients Abstract number: 562 appetite loss include anorexia, early satiety, taste within 48 hours after admission to the palliative Presentation type: Poster and smell changes. Patients with anorexia care unit of a cancer centre. Results: Internal Poster number: P146 probably experience a number of these consistency was good for each subscale with characteristics. We surveyed patients with Cronbach’s alpha values of 0.77, 0.67, 0.72, 0.77 Applying Good Clinical Practice (GCP) to cancer and anorexia to further understand the and 0.84 for GF, PF, RA, RM and MF clinical research in Palliative Care experience of anorexia and to develop an respectively. Median GF, PF and RA scores were approach to classifying the symptom. Method A 18–19 out of a maximum score of 20, indicating Gerhild Becker, Department of Internal twenty-two question empirical questionnaire extremely high fatigue for most patients; the Medicine II, Freiburg, GERMANY, Andreas was prospectively completed by patient percentages of patients with the maximum MFI Zähringer, Center of Clinical Trials, Freiburg, interview. The questionnaire surveyed anorexia subscore were 35%, 47%, and 35% respectively. GERMANY, Felix Momm, Palliative Care severity, diuval variations, GI symptoms, taste Median RM and MF scores were much lower (15 Research Group, Freiburg, GERMANY, Hubert and smell changes, possible relationship to and 12), and differed significantly from the GF, Blum, Department of Internal Medicine II, cancer therapy and patient concerns about PF and RA scores (p<0.001, Friedman test). RM Freiburg, GERMANY anorexia. Results 49 patients were surveyed over and MF scores varied widely between the lowest six weeks. The mean age, 65 + 13 years, and the highest possible score (4–20). In May 2004 the EU Clinical Trial Directive male/female 20/29. Anorexia was present for Conclusion: Most cancer patients who are (2001/20/EC) was fully implemented. Member months in 40/49 (82%). 16/49 (33%) had admitted to a palliative care unit experience States had to prepare national provisions for moderate and 25/49 (51%) severe anorexia. extreme physical fatigue. Motivation and complying with the directive until 1 May 2003 17/49 (35%) never hungered. 43/49 (88%) lost mental functioning vary widely and seem to be and had to adopt those provisions by 1 May weight though only 16/49 (35%) were clinically less impaired. This suggests that these patients 2004. The purpose of the directive is to improve cachectic. Most had constipation, nausea and are relatively capable and willing to perform quality of clinical research, protect trial subjects, satiety. Abdominal pain, belching, hiccups, mentally taxing tasks, but unable to carry out ensure credible results and create conditions indigestion occurred in 25 – 40%. Most physical demanding roles. conducive to the effective co-ordination of attributed the anorexia to gastrointestinal clinical trials in the European Community. The symptoms (except hiccups and abdominal directive`s provisions will apply to all clinical pain). Altered food preference 34/49 (69%) and Abstract number: 561 trials involving medicinal products and do not taste 29/49 (59%) were common. Taste changes Presentation type: Poster distinguish between commercial and non- were evenly divided between bitter, salt, sour Poster number: P145 commercial trials. Trials sponsored by and sweet. Altered smell occurred in 20/49 government, research council, charity or (41%). 24/36 felt anorexia worsened with the influence of different kind of opioids university are also covered. The need for more chemotherapy. Reduced appetite occurred in on cognitive functions high-quality randomized trials in palliative care 12/30 on radiation. 10/49 (20%) were not is well known. Therefore an overview will be personally concerned about the anorexia. Andrzej Stachowiak, Palliative Care Department, given how drug trials in palliative care can be Discussion Appetite loss can be present without Bydgoszcz, POLAND, Szymon Nowak, Regional conducted according to Good Clinical Practice the appearance of cachexia. GI symptoms were Centre of Palliative Care, Bysgoszcz, POLAND, (GCP). The history of the development of Good common with anorexia. Patients attributed Edward Gorzelanczyk, Academy of Bydgoszcz, Clinical Practice (GCP) guidelines of the appetite loss to GI symptoms. Taste changes Bydgoszcz, POLAND, Maciej Michalak, International Conference on Harmonization occurred in most and changes in smell in nearly Academy of Bydgoszcz, Bydgoszcz, POLAND (ICH) will be discussed. It will be described how half. Anti-tumor therapy was associated with ICH GCP applies to the Sponsor, Monitor, worsening anorexia in most. A minority were The proposed research are planned between Investigator and Ethics Committee. Using a not concerned about the anorexia despite its 09.2004 to 04.2005 at Sue Ryder’s Palliative ‘dummy study’ all relevant steps to undertake a prevalence and severity. Care Hospital in collaboration with Department clinical trial according GCP requirements will of Neuropsychology and Behavioral Genetics, be represented and the responsibilities of the Institute of Psychology, Casimirus the Great investigator will be discussed. Finally, the Academy, Bydgoszcz Poland. The main aim of complex requirements will be simplified into a the research is to describe and measure with collection of ‘golden rules’ where GCP neuropsychological and psychophysiological compliance is most important. methods the influence of different kind of opioids on cognitive functions and its possible influence on driving ability. Although the role of opioids in context of cognitive functioning is quite well known, only a few researches touches

120 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

Abstract number: 563 months of the patients’ lives. In the last half- Kaasa, Department of Cancer Research and Presentation type: Poster year of life, the mean number of health care Molecular Medicine, Trondheim, NORWAY Poster number: P147 professionals involved with one patient was 4.5, while bereaved relatives reported that this Background: Exercise interventions for palliative Statistical quantitative analysis of number was 6.4 in the last three months before cancer patients are few and the procedures are symptoms among patients with death. The care provided by health care often poorly described. Purpose: Describe the advanced cancer disease admitted to professionals was in general evaluated as good. intervention program used in our phase II Palliative Care Department Patients and bereaved relatives mentioned the intervention study. Location: Group exercise same problems in end of life care. These (3–8 patients per group) in the gymnasium at Andrzej Stachowiak, Palliative Care Department, problems concerned difficulties in fine-tuning the hospital or in the living room at the Bydgoszcz, POLAND, Szymon Nowak, Regional the care of different professionals and different palliative outpatient clinic. Symptom Centre of Palliative Care Sue Ryder Home, care settings. The problem most often registration: Prior to each session, each patient Bydgoszcz, POLAND mentioned in the last months before death filled out a symptom questionnaire, Trondheim concerned the quickness of responding to palliative assessment tool (TPAT) to monitor Patients with advanced cancer disease present acute problems (26%). We conclude that changes. Alterations in the program, caution or various kind of somatic symptoms. Because of patients and bereaved relatives are in general restrictions were then implemented. Exercise wide kind of these symptoms quantitative satisfied with the quality of end of life care, intervention: The patients participated twice a statistical analysis was conducted – to prove although the acute response to problems and week, 50 minutes each session for a six week medical care in Palliative Care Department and the mutual fine-tuning of many involved period. The program consisted of a warm-up to research somatic and psychological needs of health care professionals remain important session (10 minutes), circuit training with six patients. Main aim of the research: Statistical issues. stations (30 minutes) and a analysis of symptoms among patients in the day relaxation/stretching session (10 minutes). At of arrival to the hospital. Method: Research was each of the 6 stations, exercises were performed conducted between 1st of January 2003 and Abstract number: 565 for 2 minutes, with a 30 second break moving 30th of June 2004 among 448 patients with Presentation type: Poster on to the next station. The exercises could easily advanced cancer disease admitted to PCD. Poster number: P150 be duplicated in the home. Main focus was on During the procedure of admitting physicians lower and upper limb muscle strength, standing were to make list of symptoms and clinical The development of a new department balance and aerobic endurance. Each station problems choosing them from wide list of and a strategy for research in a well had a ‘set’ series of exercises, with the symptoms in computer software. Results. established hospice possibility for adjustments to the individual Average number of symptoms: 7,6. Most patients’ physical function. Warm up: 9 APRIL common symptoms were: – Pain (215) – Lack of Christina Mason, Department of Research, Upright/sitting position or exercise bicycle. appetite (197) – Exhaustion (171) – constipation London, GREAT BRITAIN Station 1: Strength lower limb: ‘step up’: step up (168) – dyspnoea (154) – lowered mood (145) – and down on a step. Station 2: Balance. Lack of energy (140) Conclusions Three groups For many years research has been an important Trampoline/thick mat: weight transfer. Station of symptoms were most popular: feature at St Joseph’s Hospice, Hackney, East 3: Pull down, resistance exercise for arms. Cahexia–anorexia symptoms Alimetnary canal London. It was here that Dr. (now Dame) Cicely Station 4: Start in standing position, descend to symptoms Psychological symptoms These Saunders conducted some of her foundation the floor, lie on back, then roll from side to SATURDAY results show that pain in no longer most research work on the management of pain and side, and then stand up again. Station 5: Sit on important symptom, other symptoms are distressing symptoms in the early days of bench, stand up and sit down again. Station 6: getting more common – especially among last palliative care. In recognising this and the Exercise bicycling. The session ended with few years. This shows that pain is better importance of research in all disciplines relaxation/stretching. Conclusion: The group controlled than few years ago. It is obvious that relevant to palliative care, the hospice decided exercise program was found suitable for this medical treatment and procedures in Palliative to appoint a Director of Research to build up patient population. Making individual changes Care Departments must be changed. Results and lead a research department. This in the set series was essential as the group was also shows great importance of multi- development has coincided with preparing for heterogeneous with regard to physical disciplinary team. the centenary celebrations of St Joseph’s functioning. TPAT simplified individual Hospice, which was founded in 1905. In this symptom monitoring. presentation some of the key challenges and Abstract number: 564 opportunities of this new development will be Presentation type: Poster outlined. Amongst the challenges are the Abstract number: 567 Poster number: P148 following: encouraging research activity in all Presentation type: Poster disciplines; dealing with the suspicion that Poster number: P153 Health care utilization at the end of life sometimes surrounds research; the balance of and problems in the organization of research and practice; financing new research HOSPITAL MOBILE PALLIATIVE end of life care projects in a voluntary organisation. In the CARE TEAMS: STRUCTURAL AND environment of St Joseph’s hospice there are DEVELOPMENTAL GUIDANCE Elsbeth Voogt, Department of Public Health, many opportunities for research in every FOR EUROPE Rotterdam, NETHERLANDS, Agnes Van der discipline. These include: a large new in-patient Heide, Erasmus MC, Dept Public Health, unit with 61 palliative care beds and many more Ruthmarijke Smeding, Education, Brussels, Rotterdam, NETHERLANDS, Adriaan P. Visser, patients who are being cared for at home; BELGIUM, Steven Mason, Marie Curie Hospice Helen Dowling Institute, Utrecht, patients and families from a large multi ethnic Liverpool, Liverpool, GREAT BRITAIN, John NETHERLANDS, Carin C.D. Van der Rijt, community with many different languages, Ellershaw, Marie Curie Hospice and Royal Erasmus MC, Dept Public Health, Rotterdam, cultures and faiths; a vibrant staff group with a Liverpool University Hospital, Liverpool, GREAT NETHERLANDS, Paul J. Van der Maas, Erasmus balance of age and cultural backgrounds. The BRITAIN, Catherine Markstein, Soins Palliatives, MC, Dept Public Health, Rotterdam, Research Department with its new Director Brussels, BELGIUM NETHERLANDS came into existence early in 2004. The presentation will describe the results of this first Background: The European Community In many countries, palliative care has year of co-ordinated research activity and some provided a grant, in order to research the developed in the last decades. We studied the of the plans for future developments. development of hospital based mobile palliative quality of palliative care from the perspective care teams (PCMT’s). Across Europe, mobile of patients and bereaved relatives. Patients with palliative care teams are in different stages of various types of advanced cancer were asked to Abstract number: 566 development, working in a variety of fill out a questionnaire every half year. When Presentation type: Poster institutional, cultural and political contexts. patients died during the research period, we Poster number: P152 Aim: The aim of the project was to examine the asked their bereaved relatives to participate in a challenges faced in establishing and running personal interview at home. The use of care Physical exercise intervention in palliative hospital based Palliative Care Teams. It was and problems in end of life care were assessed. cancer patients; a phase II study. Effects of finalised by providing guidelines for the Until now, 88 of 128 patients who participated the exercise program development of mobile teams in European in the study have died. Seventy-seven of these contexts. Process: Mirroring some of Palliative patients filled out a questionnaire about end of Hanne Paltiel, Palliative Unit, Trondheim, Care’s core values, decisions were taken life care in the last half-year of their lives. Most NORWAY, Line M Oldervoll, Department of inclusively, in that clinicians and researchers patients had received care from their general Cancer Research and Molecular Medicine, prepared an inventory to evaluate the structure, practitioner and one or more clinical specialists Trondheim, NORWAY, Jon Håvard Loge, ethic and clinical activities of 8 PCMT’s across during this period. About half of the patients Department of Behavioural Science and Europe together. Subsequently, sociological, had seen an oncology nurse. The district nurse Medicine, Oslo, NORWAY, May Britt Asp, psychological and ethical research teams was most often involved during the last three Palliative Unit, Trondheim, NORWAY, Stein examined the functioning of the mobile teams.

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Based on these results, the educational EMILIA BARCIA, INSTITUTO DE FARMACIA regarded as an appropriate reflection of their consultant presented a design of an education INDUSTRIAL, MADRID, SPAIN, YOLANDA professional status, and some expressed concern programme, from which 2 items were chosen SANCHEZ, SPAINISH CANCER ASSOCIATION, about accuracy of representation. This presented and piloted as to educational results by the MADRID, SPAIN, SOFIA NEGRO, INSTITUTO two problems. The new versions lacked the various teams. Results: Reports from the DE FARMACIA INDUSTRIAL, MADRID, SPAIN immediacy of speech which is so important to research teams and the resulting educational the book. More significantly changes to content phases were analysed by an expert group The aim of the present study was to evaluate the represent hindsight accounts which do not (clinicians, researchers and consultants in compatibility and physical stability of binary necessarily reflect greater accuracy. Discussion palliative care) and synthesised to form twenty admixtures composed of tramadol This situation has deep implications for five recommendations on the integration, hydrochloride and dexamethasone sodium historical representation, and is one which the education and training of palliative care mobile phosphate destined to subcutaneous authors have had to consider carefully. Through teams in Europe. In September of 2004, a administration to terminally ill patients presentation of extracts from A bit of heaven for publication was issued by the European followed at home by staff of Palliative Care the few? and a review of contributors responses, Community and distributed to the 25 European Units. The doses assayed in the study were 100, this paper aims to generate discussion of the countries. Highlights of process, research and 200 and 400 mg/day for tramadol issues surrounding historical representation of educational results will be presented. hydrochloride and 4, 16, 20 and 40 mg/day for hospice and palliative care development. dexamethasone sodium phosphate. All doses tested are usually administered in our Palliative Abstract number: 568 Care Unit. Twelve different drug admixtures Abstract number: 571 Presentation type: Poster were prepared in triplicate in saline and stored Presentation type: Poster Poster number: P154 at 25ºC protected from light exposure. At pre- Poster number: P157 determined times; 0, 5, 7 and 15 days all The impact of the disease on the family samples were checked for volume and colour Which methods best gain the views of that looks after a terminally ill changes, cloudiness and/or precipitation and people affected by cancer about end-of- oncological patient, in Italy pH determination. Moreover, all admixtures life issues? containing tramadol hydrochloride and Oscar Corli, Terapia del Doloree e Cure dexamethasone sodium phosphate were Fiona Harris, Community Health Sciences - Palliative, Milan, ITALY, Massimo Pizzuto, analysed by high performance liquid General Practice, Edinburgh, GREAT BRITAIN, Ospedale dei Bambini V. Buzzi – Milan, Milan, chromatography (HPLC). None of the samples Marilyn Kendall, University of Edinburgh, ITALY showed changes in colour, precipitation or Edinburgh, GREAT BRITAIN measurable loss of volume due to evaporation. Introduction: the italian studies concerning the The pH values ranged from 7.11 to 7.69 at time Background impact of the disease on the family of zero and from 7.06 to 7.65 at the end of the The objective was to assess the utility of both terminally ill oncological patients are few. Aim study. The losses of tramadol and established and innovative methods and of this study is to deepen this matter on dexamethasone occurred after 5 days were approaches to end-of-life research. Research national survey. Method: 74 Italian Palliative lower than 10% at 25ºC and increased up to questions included issues of recruitment, Care Centres (PCC) proposed to the caregivers 20% at the end of the study period (15 days). It challenges faced by researchers and research of the in charge patients, a questionnaire can therefore be concluded that ethics. concerning the impact of their own attending dexamethasone sodium phosphate work on their own quality of life, on the (concentration range 0.42 to 4.2 mg/ml) can be Methods economic conditions and on the support safely combined with tramadol hydrochloride A systematic review of the relevant cancer obtained by PCC. Total care on the privacy has (concentration range 1.7 to 6.7 mg/ml) in 5-day literature, 31 semi-structured interviews with an been taken on patients, on caregivers and PCC. infusion pumps with no significant losses of international sample of researchers and 4 focus Results: to OICP, 454 questionnaires totally both drugs found when kept at 25 ºC. groups with people affected by cancer. arrived. The caregiver resulted as a medium Interviews and focus groups were analysed aged woman, strictly relative to the patient that, thematically using NVivo. in about 70% of the cases, dedicates to the Abstract number: 570 Results patient from 12 to 24 hours per day, depending Presentation type: Poster Interviews with researchers revealed that a on a partial help from other relatives, Poster number: P156 mixed method approach has become more acquaintances or paid personnel. Over 80% of popular. While qualitative methods gain in- the caregivers declare that their own life has A Bit of Heaven for the Few? An oral depth data on patient and carer views, basically changed since when they look after history of the hospice movement in the quantitative methods reach a larger sector of the the patient: in various percentages, psycho- United Kingdom population, and may facilitate wider inclusion. physical troubles, reduction of the time for While researchers seek to widen recruitment, himself and for his own relationship life, Nic Hughes, Macmillan Education Unit, School however, ethics committees may deny patients further direct or indirect economical expenses. of Healthcare, Leeds, GREAT BRITAIN, Michelle the right to choose whether or not to participate. As far as concerns the relationship with the Winslow, University of Lancaster, Lancaster, The importance of sensitivity, respect, ethical patient, the worries to face the pain, to be GREAT BRITAIN, David Clark, University of conduct and emotional demands placed on physically unable in assisting him, to face a Lancaster, Lancaster, GREAT BRITAIN, Neil researchers were shared concerns. direct conversation about the disease or the Small, University of Bradford, Bradford, GREAT Focus groups revealed that people affected by death, to be unable in hiding the own worries, BRITAIN, Michael Wright, University of cancer do not want to be treated differently and to be afraid that the patient dies in front of you Lancaster, Lancaster, GREAT BRITAIN generally welcome the opportunity to share or to be unable in realize the death moment, their experiences. Similarly, some researchers are often reported. As far as concerns the PCC Background This work seeks to explore the felt that health research in general brings support, almost the total caregivers expressed a development of the modern hospice movement challenges that are not the exclusive domain of substantial positive judgment, even underlying through the words, experiences and perspectives the cancer field. We therefore looked beyond some organizing and structural lacks. of some of those involved, and represents ten cancer to draw on methods that have been Discussion: in PC, the tendency is overall to pay years of research. It includes the voices of eighty applied in other areas that require innovative attention to the problems of the terminally ill people whose personal testimony enables approaches to facilitate both communication patient. This study analyzes and points out the insight, not only into events, but into the and dissemination. difficulties of the family, both relatives to the relationships and interactions which shaped quality of life and to the economical expenses them. Aims This paper reflects on Conclusions to be faced. methodological issues involved in researching, This study reveals that a diversity of methods, interpreting and presenting history with health from research-based drama to postal professionals. In particular the implications of questionnaires, can enhance end-of-life Abstract number: 569 visibility are considered as respondents’ identity research. An in-depth understanding of patient Presentation type: Poster is necessarily made evident by using a research and carer experience, however, is best captured Poster number: P155 method which, by its nature, does not offer through qualitative methods. anonymity. Related to this, the question of SUBCUTANEOUS INFUSION OF TRAMADOL legacy is addressed as words in print become a AND DEXAMETHASONE: COMPATIBILITY lasting record. Methods When individuals were AND STABILITY given an opportunity to view their extracts in the book prior to going to print, a number were MARIA LUZ AZUARA, UNIDAD CUIDADOS prompted to request changes, in some cases PALIATIVOS, HOSP. GENERAL, PL. 14, MADRID, quite considerable, and with offers of re-written SPAIN, ATEKA SALAMA, INSTITUTO DE text. Their concerns tended to focus on the FARMACIA INDUSTRIAL, MADRID, SPAIN, presentation of verbatim speech, which was not

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Abstract number: 572 concerned with individuals’ attempts to deal in Qualitative Psychotherapy Research – Methods and Presentation type: Poster with their current situation (for example in an Methodology. Ed. J. Frommer & D.L. Rennie. Publ. Berlin. Pabst. Poster number: P158 interview maintaining their credibility as a Rolfe, G. (1998). Expanding Nursing Knowledge. Publ. ‘good’ patient, trying to ‘help’ the interviewer Butterworth-Heinemann Ltd. If you do not ask, they do not tell or complaining). To illustrate these differences, I will use examples taken from research about Mecheline van der Linden, Amsterdam, The bereavement support provided by general Abstract number: 575 Netherlands M Klein, M Boddaert, WR practitioners and counsellors in the UK, and a Presentation type: Poster Gerritsen, HM van der Ploeg, Amsterdam, The study of the way death is described by palliative Poster number: P161 Netherlands care practitioners in medical records in the UK. A further example will be provided by an PROFILE OF THE TERMINALLY ILL While several studies indicate that poor analysis of ‘Last Offices’ in the procedure PATIENTS WITH CANCER AND THEIR prognosis tumours are associated with manual of a hospital in Australia, which CAREGIVERS ATTENDED BY THE significant reductions in health-related quality revealed how nurses enact the transition DEPARTMENT OF PSYCHO-ONCOLOGY OF of life (HRQOL), psychological distress in these between life and death in their behaviours and THE SPANISH ASSOCIATION AGAINST patients undergoing treatment is often language towards the live patient and dead CANCER IN BARCELONA unrecognised. In the present study, we not only body. Discourse analysis has not been used aimed at exploring the amount of distress in much as an analytic approach in palliative care V Aresté, Barcelona, Spain, Buscemi, V, Spanish hospitalised cancer patients, but moreover we research. This paper will discuss it limitations Association Against Cancer, Barcelona, Spain, aimed at developing programs to successfully and advantages in revealing taken-for-granted Rodríguez, E, Spanish Association Against reduce psychological distress in these patients. aspects of social interactions embedded within Cancer, Barcelona, Spain, Sánchez, A, Spanish Patients referred to the oncology department language. Association Against Cancer, Barcelona, Spain, of the VU University Medical Centre and who Font, T, Universitat Autònoma de Barcelona, were treated elsewhere for solid tumours with Barcelona, Spain chemotherapy were assigned to either a “care as Abstract number: 574 usual” group (n=50) or to a group that was Presentation type: Poster INTRODUCTION offered psychological counselling (n=49). Poster number: P160 In the year 2000, the Spanish Association For both study arms, complete recordings on against Cancer in Barcelona initiated the HRQOL as measured by the EORTC QLQ-C30 The usefulness, and ethics of Practitioner- psychological attention in the field of palliative (version 3.0) at four weeks after discharge from Centred-Research in examining care with the objective to improve the quality of the hospital could be collected from 28 patients. knowledge gained from practice with life of the patients in a terminally ill situation. 9 APRIL Compared to patients with breast cancer, regard to the marriage of palliative care Keeping in mind the global health status of the prostate cancer or Hodgkin’s disease our and care of the older person person and the inherent characteristics of his or patients, with limited treatment options, had her situation, we have been intervening in both scores of at least 10 points lower on most QLQ- Jo Wilson, London, UK hospital and home settings, facilitating the C30 scales, indicating high levels of permanence of the patients in their own proper psychological distress. Additionally, patients Against a context of increasing medicalization residence. who received counselling had higher levels of of the dimensions of the Clinical Nurse SATURDAY functioning than the ‘usual care’ group on Specialist (CNS) role, and to attend to practice- METHODOLOGY QLQ-C30 scales role functioning (p < .05), development, I work one day / week (of a four An exploratory, descriptive, and retrospective physical functioning (p <. 05) and pain (p <. 01), day week) on a ward caring for older people. research orientation was used in the study. The but attained similar levels on emotional A study was undertaken that addressed sample was composed of 140 persons, all function, cognitive function, social function, whether it was “possible for me as a CNS patients and relatives attended in their home global health/HRQOL, nausea and vomiting (Supportive and Palliative Care), to develop a settings, in a period that went from principles of and fatigue. role on a ward that could provide a responsive, 2000 to middies of 2004. The variables of study These results confirm other reports that timely, accessible and equitable palliative care were the following: sex, age, derivation source, counselling improves the health-related quality service whilst developing the palliative care motive of demand, diagnostic, role of the of life of cancer patients. Beyond the disease practice of the clinical staff, and at the same caregiver, number of visits, and types of process itself it is important for patients with time grounding and developing my own discharge. incurable disease and high distress that health nursing practice?” care providers pay attention to this to improve From the paradigm of Practitioner Centred RESULTS or stabilise health-related quality of life and Research, the methodology of reflexive action Most of the home setting visits (78%) has been quality of dying. research was chosen. The model used was carried out in Barcelona City. Of the total of the “action – evaluation – understanding” (Rolfe persons attended, 24% were caregivers. 65% of 1998). A reflective diary was recorded for five the patients were women and 45% of the Abstract number: 573 weeks before a break (Period 1). It was decided caregivers were men. The age of the patients Presentation type: Poster (action) to support only those patients ranged from 28 to 88 years with a mean of Poster number: P159 requiring symptom management / dying care 56.28 years, while the age of the caregivers wherever they were on the ward (as opposed to ranged from 20 to 88 years with a mean of 52.6 How can discourse analysis be used in caring for a team of patients). The diary was years. The patients attended presented a large palliative care? kept for five weeks afterwards (Period 2). variability in their diagnostic, although 21% The diary was regarded as narrative and had a lung cancer. 41% of the intervention Sheila Payne, Palliative & End-of-Life Care analysed (McLeod and Balamoutsou 2000) to demands were made by professionals of the Research Group, Sheffield, GREAT BRITAIN yield a narrative of both periods, which were public sanitary system, and a third of all compared. The analysis showed that the action demands reflected emotional support needs. This paper will introduce discursive approaches resulted in a role that allowed me to start from the perspective of health psychology, providing a responsive, timely, accessible and CONCLUSIONS presenting two major positions: 1) an approach equitable palliative care service. Additionally by We attended the following profile of the derived from ethnomethodology and understanding better the marriage of Palliative patients in their home settings: women of conversation analysis concerned with how Care and Care of the Older Person, practice (both medium age, with breast or colon cancer, asking everyday social interactions are negotiated and my own and the ward staff’s) was developed. A for emotional support, with a mean of 4 visits, managed, and 2) ‘Foucauldian discourse commitment to reflexivity was maintained, and and with a high mortality discharge. As for as analysis’ which draws upon post-structuralist the reliability and validity of this work is in its the profile of the caregivers attended: they do writers including Foucault to examine how authenticity and its emphasis on action. not differ to the patients as far as sex and age are language constitutes social and psychological The poster critiques the usefulness of this concerned, keeping in mind that the caregiver experience. Discursive approaches regard methodology to highlight knowledge gained very often is the spouse. interview responses as evidence about how from practice. Examples of the knowledge people use language to construct that particular gained regarding the Palliative Care / Older situation at that particular time. Discursive Person Care interface will be included. approaches makes no assumptions about Arguments related to the ethics of using this consistency of responses in other situations, no methodology are presented with respect to inferences about intra-psychic processes (how patients and team members, and with particular people think or feel), and explain talk as regard to the practitioner – researcher representing a repertoire of ways that people themselves. have of dealing with questions in social situations, such as that of an interview. In References. discursive approaches, analysis of talk is McLeod, J., & Balamoutsou, S. (2000). A Method for Qualitative Narrative Analysis of Psychotherapy Transcripts,

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Abstract number: 576 effectiveness in changing practice and Abstract number: 579 Presentation type: Poster professionals’ views on the consequences for Presentation type: Poster Poster number: P162 patient care. Methods: Focus groups of Poster number: P165 members of the 12 participating practices at A Prospective Regional Audit of the baseline and six months. Questionnaires to 12 Initial results of implementing the system Management of Cancer-Associated participating practices and 12 matched practices of quality management (ISO 900:2001) in Hypercalcaemia in Palliative Care at baseline and six months. Questionnaires to the Regional Center of Palliative Care- Sue 18 other practices in the area at six months. Ryder Home Jennifer Smith, Palliative Care Department, Semi-structured interviews with a GP from each Liverpool, GREAT BRITAIN, Jennifer Doherty, participating practice one year after Andrzej Stachowiak, Palliative Care Department, Whiston Hospital, Prescot, GREAT BRITAIN, introduction of GSF. Results: Participating Bydgoszcz, POLAND Andrew Dickman, Whiston Hospital, Prescot, practices reported that the GSF was acceptable GREAT BRITAIN and time efficient. Standards were achieved Focusing on patients and the quality of medical more often by participating practices compared service is one of positive aspects of health Introduction: Cancer-associated hypercalcaemia to matched or other practices in the area. service reform that has been introduced in is an underdiagnosed and poorly managed Registers, team meetings and co-ordinated care poland since 1999. The principle of palliative condition and is a cause of significant were thought to have improved care groups before those reforms was morbidity and mortality amongst palliative care communication, teamwork, patient implementing the idea of comprehensive care, patients. Within the Merseyside and Cheshire identification, assessment and care planning in in accordance with the definition of WHO. Palliative Care Network Audit Group participating practices. Conclusions: The GSF Good quality of medical service is in great (MCPCNAG) evidence-based guidelines and appears to be acceptable and its early demand and palliative care responds to this standards for the management of introduction to a limited number of primary demand. After many years of experience our hypercalcaemia were developed and clinical care teams appears to have changed practice. team set a question how to develop and practice was audited against these. Participating GPs and district nurses were improve the standard of care. The strategy of Methodology: A literature review was initially positive about the effect on the quality of care our development focuses on the organization undertaken to update previously-existing provision. An evaluation of the national uptake of specialist palliative care for larger group of standards and guidelines for the management of GSF and further research into its effectiveness patients thus far. To achieve this aim we of cancer-associated hypercalcaemia. Over a is required. decided to introduce the system of quality three-month period a prospective audit was management. After preparation of the performed of management of hypercalcaemia managerial staff and the personnel we began in cancer patients within hospice in-patient Abstract number: 578 the process of implementation of the system of units and known to Specialist Palliative Care Presentation type: Poster quality management on the basis of ISO 9001. Teams in hospital and community settings Poster number: P164 An essential element of the implementation across the region in order to assess whether was the appointment of quality attorney and management was in accordance with the HOW DO SYMPTOMS INTERFERE WITH team, as well as interior checkers. The whole guidelines and standards achieved. Within the QUALITY OF LIFE IN ADVANCED CANCER center and processes taking place there were audit severity of symptoms of hypercalcaemia PATIENTS? examined in relation to the requirements of was recorded before and after treatment using a the ISO 9001 norm. Policy of quality, mission, 4-point scale of severity and potential indicators Andrei Novik, Hematology, Moscow, RUSSIA, T quality aims, maps of processes, procedures of a poor prognosis were also explored. Results: Ionova, National Cancer Research and and standards of conduct were defined in a A total of 55 patients with cancer-associated Treatment Center, St. Petersburg, RUSSIA, A ‘Book of Quality’. The results of those actions hypercalcaemia were included in the audit. Kishtovich, National Cancer Research and include: new quality within the scope of Aspects of practice deviating from the Treatment Center, St. Petersburg, RUSSIA, S medical and administrative documentation, guidelines and standards were identified. Due to Kalyadina, National Cancer Research and reduction of activity costs, defining standards poor recording of symptoms of hypercalcaemia Treatment Center, St. Petersburg, RUSSIA, I of medical conduct, introduction of checking it was not possible to confirm symptomatic Rikov, National Cancer Research and Treatment patients’ satisfaction. Another result of the response to treatment. Among the patients who Center, St. Petersburg, RUSSIA implementation of the system is constant died within the audit period a statistically monitoring of the management. The Quality significant correlation was identified between Introduction: Patients with advanced cancer Branch constantly monitors and assesses the the time to death and pre-treatment serum experience an impaired quality of life (QoL) due standards, at the same time it updates albumin, but no association was identified to symptoms related to the disease itself or the procedures. Interior checkers will review the between time to death and severity of toxicities of treatment. We have developed the conformity of procedures. However the most hypercalcaemia prior to treatment, serum following grades of QoL impairment as important control will be the analysis of sodium, age or mobility. Conclusion: Evidence- compared to a population of controls: mild examination of patients’ and their families’ based guidelines and standards for the (25% or less QoL decrease from controls), satisfaction. The system of control will result in management of cancer-associated moderate (25–50% decrease), severe (50–75% the decrease of accidental events and increase hypercalcaemia are presented and aspects of decrease) and critical (more than 75% decrease). of safety for patients and their families under management regionally that deviated from The goal of this research was to study the our care. these are discussed. severity of main symptoms in advanced cancer patients with different grades of QoL impairment. Patients and Methods: 201 Abstract number: 580 Abstract number: 577 advanced cancer patients (male/female 80/121; Presentation type: Poster Presentation type: Poster mean age 61.5) were enrolled in the study. The Poster number: P166 Poster number: P163 Russian versions of SF-36 and M.D. Anderson Symptom Inventory (MDASI) were used for QoL Is ‘dying at the desired place’ an indicator Improving palliative care in the and symptom assessment, respectively. To for preference-oriented palliative care? community: an evaluation of the first obtain QoL index the integral profile method phase of the Gold Standards Framework (MIP) was used. Results. The majority of Birgitt van Oorschot, Abteilung für patients experienced critical (42%) and severe Strahlentherapie, Jena, GERMANY, Susanne Thomas William Noble, Academic Palliative (20%) QoL impairment. Moderate, mild, and no Schweitzer, Zentralklinikum, Bad Berka, Medicine Unit, SHEFFIELD, GREAT BRITAIN, QoL impairment was observed in 10, 12, and 16 GERMANY, Kerstin Steinbach, Modellprojekt, Keri Thomas, Birmingham, GREAT BRITAIN % of patients, respectively. The QoL indices Jena, GERMANY, Karena Leppert, Institut für differed significantly between the groups (0.04 Medizinische Psychologie, Jena, GERMANY, Object: Most of a patient’s last year of life is vs 0.12 vs 0.2 vs 0.28 vs 0.47; p=0.00002). Reiner Anselm, Theologische Fakultät, spent at home under the care of the primary Moderate -to- severe fatigue, sleep disturbance, Göttingen, GERMANY care team. More patients prefer to die at home and pain were observed in patients with critical than are able to do so. A managed framework of and severe QoL impairment; one third of Although most people want to die at home, the care, the Gold Standards Framework (GSF) was patients exhibited 3 or more moderate -to- most probable place of death is hospital or a developed to formalise and improve the severe symptoms. Conclusion. The majority of nursery home. We know, that patients’ wishes organisation of palliative care in the patients with advanced cancer exhibit severe to may change near the end of life and that community. The framework consists of the critical QoL impairment as compared to a patients sometimes prefer to spent their last standards as well as a support programme to aid healthy population. They experience moderate- time in hospital, a hospice or a nursery home. their implementation. A national programme of to-severe fatigue, pain, or sleep disturbance. Within the framework of the project ‘patients as dissemination is underway and GSF is being Grading of QoL impairment and symptom partners – tumor patients and their used by over 1,500 UK practices. The aim of this assessment in these patient groups is participation at medical decisions’ we have study was to evaluate the first phase of GSF in worthwhile to provide adequate management explored the relatives’ and physicians’ terms of its acceptability to primary care teams, of advanced cancer. perspective concerning the dying place desired

124 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

by the patients. Method: From March 2002 to that of a basic nurse. If defects have come into status and time from diagnosis to death. Results: June 2004, a standardized questionnaire was existence, it is justified to set up a separate 30 patients were identified (Mean age 68.5 sent to GPs and surviving relatives of the specialism with corresponding educational years, 17 male). Prostate (20%), lung (20%) and patients and to all surviving relatives of the requirements. breast cancer (16%) were the most common patients, who were in contact with the newly primary cancer diagnoses. General back pain established palliative councelling team. Results: present in 76% of patients for a median of 14.5 88 GPs and 109 relatives answered the Abstract number: 582 days prior to diagnosis of SCC was the most questionnaire (56,4 %). 31,9 % of the patients Presentation type: Poster common symptom. Patients with a known died at home, 54,8 in hospital and 11,1 % in a Poster number: P168 diagnosis of cancer prior to admission with nursery home. On the one hand, 52 GPs (57,1 MSCC were diagnosed faster after onset of %) and 59 relatives (54,1 %) said, the patient Nursing care – what is the optimal symptoms than patients without (Median ten died at the prospectively desired place. But on standard? versus 22 days). Fifteen patients had a back x-ray the other hand, 18 GPs (18,1 %) and 33 relatives and/or a bone scan prior to their MRI. None of (30,2 %) said, the patient did not want to die at Sheila Payne, Palliative & End-of-Life Care the seven patients referred for a surgical the place, he or she actually did. All patients, Research Group, Sheffield, GREAT BRITAIN opinion subsequently underwent surgery. who died at home, wanted to die there. 20 GPs Twenty-eight patients received radiotherapy. and 17 relatives said, the patient wanted to die Nurses have helped shape palliative care by Twenty-five patients had died prior to the audit in hospital (34,2 % of all patients, who died in establishing and developing services, leading date with a median survival from diagnosis to hospital) and 10 persons mentioned, that the educational and research programmes. Most death of 31 days (range 4–422 days). Of the ten patient wanted to die in a nursery home. 40 palliative care nursing is delivered by general discharged patients eight remained ambulant patients died against their own wishes in qualified nurses. These nurses need to be aware and nine remained catheter-free. Conclusions: hospital (20,3 % of all patients and 37,0 % of of the principles of palliative care; including The median survival was short in the audited the patients, who died in hospital). Named attention to the physical, psychological, social population, however motor and bladder reasons were deteoration of the disease, poor and spiritual care of patients and their families, function were preserved in the majority of symptomcontrol at home, hope until the last and know how to access additional support in discharged patients. Particular attention to time and to late planned discharge of the dealing with complex problems. Nurses with performance status and swift diagnosis and partient. Conclusion: The desired place of dying additional qualifications and expertise in treatment of SCC in suitable patients are seems to be one indicator for preference- palliative care are described as specialist therefore the key targets in the management of oriented palliative care. In the presentation, the palliative care nurses. These nurses may work in SCC. patients’ perspective will be contrasted with hospitals, hospices or in the community both relatives’ and GPs’ view. Communication before to provide direct care to patients and families. 9 APRIL the beginning of the dying process needs to be Many of these nurses work independently but Abstract number: 584 improved. some are part of multidisciplinary teams. The Presentation type: Poster role of specialist palliative care nursing is varied Poster number: P170 and complex and includes symptom control Abstract number: 581 and supportive care for patients and families, Zoledronic acid treatment in patients Presentation type: Poster co-ordination and communication between with metastatic bone lesions referred to

Poster number: P167 other services, empathy and respect to the Palliative Home Care Unit SATURDAY dignity and preferences of those in their care. Nursing in palliative care: Nurses need to be aware of cultural diversity Flavio Fusco, NHS , Department of Geriatric specialism or not? and the social implications of death, dying and Care ASL 3 Genoa, Genova, ITALY, Ernesto bereavement. In this session, we will discuss: Palummeri, Department of Geriatric Care ASL3 Angelique De Wit, Erasmus MC, rotterdam, Roles and competences of a specialist palliative Genoa, Genoa, ITALY NETHERLANDS, Arianne Brinkman - care nurse, including: ● Palliative care expertise Stoppelenburg, Agora, Bunnik, NETHERLANDS, – Knowledge and application of knowledge. Introduction: Zoledronic Acid (ZA) represents a Janneke Koningswoud-ten Hove, Hospice ● Communication – Skills with patients, third-generation bisphosphonate used for the Calando, Dirksland, NETHERLANDS, Mathilde families, and multidisciplinary team. ● treatment of metastatic bone disease. It is much Van der Breggen, Verpleeghuis Antonius Collaboration – Working with multidisciplinary more effective than other bisphosphonates and IJsselmonde, Rotterdam, NETHERLANDS team members, family carers and other its safety have been proved mainly in patients professionals. ● Advocacy – For patient and with tumor-induced hypercalcemia. Aim: to Introduction: Among nurses working in family and for palliative care services. assess the tolerability and toxicity profil of ZA in palliative care, the conviction is held that ● Evidence based practice – Participation in home patients with metastatic bone lesions working in palliative care asks for specific continuing professional development, followed at home. Methods and Findings: From requirements of these nurses. The question is education and research. ● Professional nursing July 2003 to July 2004, 32/412 patients (pts) whether palliative care really asks for specific – Practising ethically, honestly and delivering referred to ASL 3 Palliative Home Care Unit , requirements and whether the nurses can meet ‘best practice’ to all. were treated with ZA 4 mg iv , administered a these demands. The care given by the nurses 30-minute infusion, in 100 ml of 0,9% saline, must be organised in such a way as to guarantee every 30 days. The mean age of pts was 74 years and strive for measurable quality of care for Abstract number: 583 (range 45–85), Karnofsky Performance Status incurable ill human beings in the last phase of Presentation type: Poster was 35 (30–60). The sites of primary tumors their lives. Methodology: From September 2003 Poster number: P169 were breast in 10 cases (31,2%), prostate in 8 until July 2004, several members of the Dutch cases ( 25%) lung in 6 (18,7%), multiple Association of Nurses working in Palliative Care Diagnosis and management of spinal cord myeloma in 3 (9,3%), gastric in 3 (9,3%) and (Nederlandse Vereniging voor compression – what’s the urgency? malignant pleural mesothelioma in 2 (6,5%). Verpleegkundigen werkzaam in de Palliatieve 14/32 pts (43,8%) also receveid palliative Zorg) have busied themselves with the Heino Hugel, Palliative Medicine, Liverpool L25 chemo-ormon or radiotherapy. 20/32 pts ( development of a profile for that professional 8QA, GREAT BRITAIN, L Jones, HSPCT, Royal 60,3%) used of high-potency opioids. All sector. According to a recognised method, the Liverpool University Hospital, Liverpool, GREAT patients were pre-treated with oral calcium and specificity of the nurse working in palliative BRITAIN, P Saltmarsh, HSPCT, Royal Liverpool vitamin D3 supplementation ; we also care is visualised. One of the most important University Hospital, Liverpool, GREAT BRITAIN, performed evaluation of serum creatinine and analyses that were addressed is the specification A Coackley, Marie Curie Hospice Liverpool, serum calcium before and after each tretment of core tasks together with the corresponding Liverpool, GREAT BRITAIN with ZA. Results: 32 pts received 104 courses of competences. Results: Seventeen core tasks have ZA ( mean 3.3, range 1–6). 4/32 pts reported been identified, subdivided into three different Aims: To establish guidelines for diagnosis of asymptomatic hypocalcemia ( 1 patient with groups, i.e. tasks related to the person in need of malignant spinal cord compression (MSCC), pregressed hypocalcemia), 4/32 pts experienced care, profession-related tasks, and organisation- referral criteria to surgical/oncological services transient fever, fatigue and myalgia. There was related tasks. Along with every core task, the and to assess outcome regarding discharge, non evidence for renal or haepatic toxicity, corresponding competences are described. functional status and survival. Methods: A based on renal and liver function tests. A Proceeding from these competences, the retrospective questionnaire-based audit was transient raised serum creatinine concentration concrete conduct and behaviour of the nurse carried out including all patients identified via was observed in 3/32 patients(< 0,4 mg/dL to working in palliative care are named. Specific MRI reports with a diagnosis of MSCC at two baseline values). Conclusion.The results of this core tasks are, among others, ‘to develop, university hospitals in Liverpool from small trial support an expanded role for ZA in guarantee and further the quality of palliative 31.5.01–1.6.03. Questions related to symptoms the home care treatment for patients with care’, ‘to guide’, ‘co-ordinate’, ‘consult’ and of SCC, assessment including time to diagnosis, advanced cancer disease and bone metastases. ‘care for the caregivers’. Conclusion: The assessor, radiological diagnosis, management description above makes it possible to assess including steroids, surgery and radiotherapy as whether the expertise is specific compared to well as outcome including discharge, functional

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Abstract number: 585 by the criteria stool free interval, defecation Abstract number: 588 Presentation type: Poster rate, a Numerical Rating Scale of the subjective Presentation type: Poster Poster number: P171 feeling of being constipated (NRS constipation) Poster number: P174 for a period of five consecutive days. Results Oral morbidity in cancer patients. Mean age was 57.5, (MG) resp. 60.4 years Non-resectable malignant intestinal A pilot study (HMG). Cancer diagnoses were lung cancer obstructions: 3 successive therapeutic (MG 50%, 14% HMG) and urogenital tumours phases over 80 cases Stig Ottesen, Centre for Palliative Medicine, (MG 13.3%, HMG 30%), and gastro-intestinal Oslo, NORWAY, Bente Brokstad Herlofson, cancers (HMG 24%). Mean daily dosage of Guillemette Laval, Hopital Andre Michallon, Institute for clinical odontology, University of morphine was 104,9 mg (sd ± 100,5), and of Grenoble, FRANCE, Catherine Arvieux, CHU Oslo, Oslo, NORWAY, K Løken, Faculty of hydromorphone was 27.5 mg (sd±23.4). Mean Grenoble, Grenoble, FRANCE, Marie-Laure odontology, University of Oslo, Oslo, NORWAY, NRS for pain was 3.4 (MG) resp. 3.6 (HMG). Villard, CHU Grenoble, Grenoble, FRANCE, Lene Åsberg, Faculty of odontology, University Defecation rate were 0.94 per day (MG) and 0.9 Jean-Philippe Mestrallet, CHU Grenoble, of Oslo, Oslo, NORWAY, Trude Aamotsmoe, (HMG). The stool free interval > three days (15% Grenoble, FRANCE, Laetitia Stefani, CHU Centre for Palliative Medicine, Ullevål MG – 4% HMG) (p = 0.007), and NRS for Grenoble, Grenoble, FRANCE University Hospital, Oslo, NORWAY constipation differed (3.94 MG – HMG 2.2). patients used laxatives, and patients. Laxative A prospective medicosurgical protocol was Introduction: Oral health problems are use comprised polyethylene glycol (HMG 40 %, implemented for 80 episodes of intestinal common in cancer patients. Physicians and MG 65 %), sodium-picosulphate (HMG 24 %, obstruction in 75 patients followed for 4 years nurses show less attention to the mouth than to MG 25 %) (p > 0.08), mostly (multiple answers at the Grenoble University Hospital. All 80 other parts of the body (Øhrn 2001). possible). Conclusion Constipation signs were episodes resulted from unresectable peritoneal Xerostomia, mouth pain and oral candidiasis more frequent in patients with an morphine carcinomatosus. An endoprosthesis was may cause considerable distress, compromise therapy. In comparison with morphine proposed whenever feasible. The protocol nutrition and influence proper cancer therapy. hydromorphone seems to have less constipating involved three successive therapeutic phases: Improved identification of oral morbidity, effects. the first phase involved a five-day attempt to documentation in medical records and mouth relieve the obstruction with corticosteroids and care are needed. Aims: To screen the prevalence to control the symptoms with antiemetic of oral morbidity in cancer patients admitted to Abstract number: 587 agents, anitcholinergic antisecretory agents, and a department of oncology, receiving curative or Presentation type: Poster analgesics as needed. In the event of refractory palliative therapy mostly outside the head- and Poster number: P173 nausea or vomiting with greater than 1.25 l neck region. Investigate the information given gastric secretion, the second phase was initiated on oral morbidity. Material & Methods: Sixty- Central Effects of Transdermal using somatostatin analog. If this treatment was two consecutive inpatients who where eligible Buprenorphine, Fentanyl, and oral ineffective after three days, phase three was to participate in a screening trial. Screening by a Hydromorphone: a Prospective, undertaken with gastrostomy. Outcome showed 54-item face-to-face questionnaire, scoring by a Comparative Evaluation of 107 Patients that for the 80 episodes of obstruction, medical modified ESAS (Edmonton Symptom with Cancer Pain treatment enabled relief in only 29 times (25 in Assessment System) and oral examination were phase I and 4 in phase II) and that symptoms performed. Results: Of the 62 patients, forty Stefan Wirz, Schmerzambulanz were controlled despite persistent obstruction in were females, age 35–83, twenty-two were Anästhesieklinik, Bonn, GERMANY, Hans 32 episodes (25 in phase I and 7 in phase II). males, age 31–82. Some of the 54 questions Christian Wartenberg, University of Bonn, Ten patients were relieved by the gastrostomy were not answered by all patients of different Bonn, GERMANY, Joachim Nadstawek, providing symptom control without a long- reasons. o Fifty of 62 patients had received University of Bonn, Bonn, GERMANY term nasogastric tube for 72 of the 80 episodes chemotherapy less than one month before (90%). The 8 remaining patients experienced screening. Forty-four were on medications Introduction Aim of this investigation was the persistent vomiting and required a nasogastric contributing to dry mouth. o Xerostomia, assessment of opioid mediated central effects in aspiration until death. Fifty-eight episodes (72% reported by fifty-three of the 62 patients, was cancer pain patients with transdermal of overall total) were controlled for 10 days or ranged as the most significant problem (VAS, buprenorphine (b), fentanyl (f), or oral less. Median time to gastrostomy was 20 days. mean 5,6) over pain, nausea, dyspnea, anxiety hydromorphone (hm). Methods and patients Median survival was 30 days. These very and appetite. o Ten of 31 patients showed oral After ethical approval of the local ethics positive results could be optimized by using pseudomembranous candidiasis. o Twenty-four committee and patients written consent we somatostatin analog as first intention treatment of the 62 experienced oral discomfort and enrolled 107 cancer pain patients into this instead of anticholinergic agents. The mouth pain and 9 of the 30 patients reported prospective comparative and observational cost/effectiveness ratio remains however to be halitosis. o Thirty-eight of 58 complained of study. Using standardized interviews and evaluated. In any case, this multidisciplinary missing information and treatment of oral side questionnaires we assessed central symptoms as work between palliative care and specialized effects. o Eighteen of 31 wanted dental day time sedation, dizziness, jerks, and sleep medical and surgical teams demonstrated its treatment. Conclusions: Patients with cancer disturbances as sleep onset and maintenance usefulness for the management of terminally ill outside head-and neck need increased insomnia, nightmares by Numerical Rating patients. information on oral morbidity and improved Scales and categorical variables. Other variables mouth care. Oncology teams should include comprised demographic and medical data. Data dental professionals. Further studies are needed were analysed by descriptive and confirmative Abstract number: 589 to increase the attention to oral morbidity. statistics. Results Mean age was 66 (b), 64,6 (f), Presentation type: Poster and 60.4 years (hm). Cancer diagnoses were Poster number: P175 lung cancer, gastrointestinal and urogenital Abstract number: 586 tumours, mostly. Mean dosage of opioids were Methylphenidate as needed for Fatigue in Presentation type: Poster 51.5 µg/h (b), 82.3 µg/h (f), and 27.5 mg/d (hm), Patients with Advanced Cancer – A Poster number: P172 mean NRS (pain) ranged from 2 (b, f) to 3.6 prospective double blind controlled study (hm). Day time sedation (NRS 4.7 f, 4 b, 2.7 Hydromorphone, Morphine, and hm), dizziness (NRS 1.7 b, 1.6 f, 1 hm), were Lise Pedersen, Department of Palliative Constipation: are there Differences? most severe with transdermal opioids. Medicine, Copenhagen, DENMARK, Mogens Myoclonus was most frequent with b (group Groenvold, Bispebjerg Hospital, Copenhagen, Stefan Wirz, Schmerzambulanz mean value 0.5/day) (f, hm 0.2), sleep DENMARK, Morten Aa Petersen, Bispebjerg Anästhesieklinik, Bonn, GERMANY, Hans maintenance insomnia with f (group mean Hospital, Copenhagen, DENMARK Christian Wartenberg, Universität Bonn, Bonn, value 0.5/night) (b 0.3, hm 0.4). Nightmares GERMANY, Joachim Nadstawek, Universität occurred more often with f and hm (group Background: Fatigue is a highly prevalent Bonn, Bonn, GERMANY mean value 0.8/night) than with b (0.3). No symptom in patients with advanced cancer and differences were seen for sleep onset insomnia has a strong negative impact on patients’ daily Introduction Aim of this investigation was the (b, f 0.2 b, hm 0.24). Conclusion Compared life. Medications capable of improving the assessment of the symptom constipation in with oral hydromorphone, the transdermal subjective symptoms of fatigue would be useful, cancer pain patients with either with oral administration of buprenorphine or fentanyl but sufficient evidence is missing. One phase III morphine or oral hydromorphone. Methods revealed higher rates and severity of several trial in HIV patients and one phase II in cancer and patients After ethical approval of the local central symptoms. patients have indicated that methylphenidate, a ethics committee and patients written consent psychostimulant, can improve fatigue. we enrolled 80 cancer pain patients (morphine Aims: To evaluate the efficacy of group / MG) or oral hydromorphone Methylphenidate as needed for the (hydromorphone group / HMG) into this management of fatigue in patients with prospective comparative and observational advanced cancer. study. We assessed the symptom constipation Methods: A prospective controlled double blind

126 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

paired design, where the patient is his/her own Abstract number: 591 mainly by changing the drug therapy (26%). control, has been used. Patients with advanced Presentation type: Poster Others were placing of a urinary catheter or cancer and a fatigue score > 50 on a 0–100 VAS Poster number: P177 gastric tube and removal of drains. The US scale were included. Patients were given a box findings lead to cessation of life prolonging with 10 placebo tablets and 10 methylphenidate Daily life function in patients with procedures in 2 cases. Conclusion: Bedside tablets wrapped in little plastic bags, hormone resistant prostate carcinoma sonography is a well tolerated, cost effective individually numbered from 1 to 20 and packed treated with radiotherapy for spinal cord diagnostic tool for severley ill patients. It helps in blocs of 4 with 2 active and 2 placebo compression to assess the patients condition and allows (randomly arranged). When patients had taken immediate therapeutic intervention. The at least 3 tablets they were regarded as Nina Aass, Department of clinical research, diagnostic findings influence the therapeutic evaluable. Primary effect parameters are the Oslo, NORWAY, Sophie Fosså, The Norwegian management and help to safe other mean differences in the VAS scale for tiredness Radium Hospital, Oslo, NORWAY investigations like x-ray and CT scans. evaluated after 2 and 5 hours and secondary effect parameters are the other VAS scales in the Object of the study: To identify prognostic “The Edmonton Symptom Assessment System” factors and prospectively evaluate daily life Abstract number: 593 (ESAS). With a planned sample size of 28 function and pain experience in hormone Presentation type: Poster evaluable patients the study has a power of 0.90 resistant prostate cancer patients with spinal Poster number: P179 to detect a mean difference of 15 on a scale cord compression treated with radiotherapy. from 0–100 between active and placebo tablets. Patients and Methods: Consecutive patients Assessment and Treatment Ubretid of Results: Thirty-eight patients have been treated at the Norwegian Radium Hospital from Constipation After Opioids in Palliative included in the study. Twenty-six patients are May 1996 to October 1999 participated in the Care Patients assessed evaluable, 9 non evaluable, 2 patients study. Daily life activities were assessed at start have not handed in their papers and 1 is still and discontinuation of radiotherapy and 2 and Sylwester Mordalski, Chair of Pain Clinic and being treated. 6 months thereafter using a questionnaire Anesthesiology and Intensive Therapy Clinic, The results of the statistical analysis will be based on a slightly modified Barthel activity of Wroclaw Medical University, Wroclaw, presented at the congress. daily living Index. The patients were followed to POLAND, Feliks Blaszczyk, Palliative Medicine death. Results: 49 patients were evaluable. Time Clinic, Home Hospice, Oncology Centre of from debut of neurological deficits to start of Lower Silesia, Wroclaw, POLAND Abstract number: 590 radiotherapy was median 4 days. Median target Presentation type: Poster dose was 30 Gy. Overall survival from start of Introduction and objectives: Patients with Poster number: P176 radiotherapy was median 3.5 months. No advanced cancer cancer non pain and chronic 9 APRIL clinically relevant pretreatment parameters that received opioid treatment. Constipation is very Feasibility of managing malignant pleural predicted function after radiotherapy were common side effect. Usually doctor prescribing effusion by a chronic indwelling catheter identified. In general, improvement with regard opioids should at the same time provide anti at home to mobility, daily life activities and sphincter constipation treatment. But using long term control was reported after irradiation. laxative drugs causes addiction. Material and A.E. Schaap, Medical Oncology, Rotterdam, Posttreatment the majority of patients reported Methods: Research involved 40 patients NETHERLANDS, L.M. Van den Toorn, Erasmus pain, usually intermittent, although they used suffering from post opioid constipation and 40 SATURDAY MC - Daniel den Hoed Cancer Center, analgesics. Conclusion: Definite treatment of patients with chronic non cancer pain after 65 Rotterdam, NETHERLANDS, C.C.D. Van der Rijt, spinal cord compression should be considered years old. All of them had been previously Erasmus MC - Daniel den Hoed Cancer Center, in all hormone resistant prostate cancer patients treated with laxatives with poor Results. Rotterdam, NETHERLANDS in good general condition irrespective of the Afterwards patients were administrated Ubretid neurological deficit. – long acting cholinesterase inhibitor twice a Introduction: Malignant pleural effusion (MPE) day 1 tablet. Results: After use of Ubretid in is a common complication in metastatic cancer. patients with different kinds of cancers, chronic In case of dyspnoea, thoracocentesis and Abstract number: 592 non cancer pain and opioid caused constipation pleurodesis are considered standard palliative Presentation type: Poster – satisfying effect was achieved (normalization treatments. However, thoracocentesis Poster number: P178 of intestinal activity). Moreover Ubretid protects frequently has to be repeated regularly and from flatulance, normalizes urethra and pleurodesis requires hospitalization. The Use of Bedside Sonography in a bladder, improves quality of life. Conclusions: Furthermore, pleurodesis fails in a subgroup of Palliative Care Unit Palliative patients with diagnosed cancer and patients. The PleurX Pleural Catheter – an with non cancer pain in age of 60 and over indwelling catheter to drain MPE intermittently Otto Gehmacher, Palliative Care Unit, treated with opioids should take preventively – is a relatively new option that allows Hohenems, AUSTRIA, Alois Wüstner, laxatives. Ubretid seems to be the best solution treatment on an outpatient basis for weeks or Landeskrankenhaus Hohenems, Hohenems, for alleviating guts activity. months. Methods: From May 2002 till AUSTRIA, Franziska Wagner, September 2003 17 patients were treated with a Landeskrankenhaus hohenems, Hohenems, PleurX Catheter in our hospital. After AUSTRIA, Gebhard Mathis, Landeskrankenhaus Abstract number: 594 admittance a clinical nurse specialist informed hohenems, Hohenems, AUSTRIA Presentation type: Poster patients and relatives about the PleurX Catheter Poster number: P180 and taught how to use the catheter to drain Introduction: Palliative care patients are pleural fluid intermittently. After placement severley ill and suffer from multiple complaints. When nothing helps: Propofol in sedation patients left the hospital on the same day. To On the one side unnecessary diagnostic and intractable nausea, ten years of evaluate its benefits, complications and procedures should be avoided, on the other side clinical experience patients’ satisfaction, medical charts were exact diagnosis is important to provide best studied and questionnaires were sent to 14/17 symptomatic relief. We examined the use of Staffan Lundström, Palliative Medicine, patients, relatives or district nurses. Results: All bedside sonography in the set up of a palliative Stockholm, SWEDEN, Carl Johan Fürst, patients (n=17) had recurrent cytologically care unit. Methods: 100 examinations were Stockholms Sjukhem, Stockholm, SWEDEN proven MPE. Mean duration of catheter use was performed on 62 patients. 83 patients 2.3 (range 1–6) months. Complications were: underwent bedside sonography, whereas 17 Background: When there is a need for sedation dislocation (4), infection (1), empyema (1) and cases were examined in the US lab of the in end of life, benzodiazepines, neuroleptics hyponatriaemia (1). 12 questionnaires were medicine departement. There was an and barbiturates are commonly used to achieve returned. 10 patients or relatives drained the emergency indication in 25 patients, 75 symptom control. In difficult cases, there are a catheter on there own. 2 patients needed investigations took place under routine few reports on the use of propofol. Also in assistance of a district nurse. All responders were conditions. We differentiated abdominal US intractable nausea propofol has emerged as an satisfied. The mentioned reasons for satisfaction (72), thoracic US (43), echocardiography (2), interesting alternative. We report on the use of were: relief of dyspnoea (6), user-friendly (5), and small part US (5). The indications for US propofol in 34 patients during the last ten years. possibility for treatment at home (5). examination were: abdominal discomfort Method: Since 1995 we have prospectively Conclusion: With a PleurX Catheter, MPE can (28%), dyspnoea (27%), tumor staging (26%), followed each patient receiving propofol at our be drained at home in terminally ill patients follow up (11%). internal jugular vein catheter unit and collected demographical data, with an acceptable complication rate. Nurses (4%), and others (4%). Results: The information on tumour burden, medication, play a critical role in informing patients and examination lead to US guided interventions in lab parameters, symptom distress, subsequent relatives about the PleurX Catheter and in 29 pat.: Drainage of – pleural effusion 13 pat. – dosing and effect. Results: 21 patients were educating them how to use it. All patients, ascites 6 pat. – abcess 3 pat. Others (central given propofol in order to obtain conscious relatives or district nurses judged the use of the venous line, suprapubic catheter etc.) 7 pat. In sedation during the terminal phase when rapid catheter as feasible and valuable. addition the findings of the US examination dose escalation of diazepam, midazolam and influenced the management in 37 patients, neuroleptics was ineffective in achieving

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symptom control . The starting dose of propofol Abstract number: 596 have hypercalcaemia of malignancy after all. We was 1 mg/kg/h and it was titrated in steps of 0,5 Presentation type: Poster discuss his response to treatment and outcome. mg/kg/h every 30–60 min until conscious Poster number: P182 sedation was reached. A dose between 1 and 2 mg/kg/h was effective in almost all patients to A Strip Against Dyspnea Abstract number: 598 reach the goal without limiting side effects. In a Presentation type: Poster few patients there was a temporary need for Alberto Molto, Palliative Care Service, Lugano, Poster number: P184 doses up to 4 mg/kg/h to achieve symptom SWITZERLAND, Mauro Bianchi, Hospice control. The vast majority of patients received Lugano, 6900 Lugano, SWITZERLAND, Hans Sublingual atropine effectiveness in the treatment during their last 24–48 hours in Neuenschwander, Institute of Oncology of inadequate control of salivary flow: a life. 13 patients were given propofol temporarily Southern Switzerland, Lugano, SWITZERLAND randomized placebo-controlled, double- due to intractable nausea when current blind crossover study treatment including corticosteroids and 5-HT3 RATIONAL: ENDS (external nasal dilator strips) blockers was unsuccessful. The optimal dose in are adhesive bands which contain a central Gustavo De Simone, Palliative Care, Buenos order to avoid unwanted sedation was between elastic strip which provide a spring action. The Aires, ARGENTINA, Jorge Eisenchlas, Hospital 0,5 and 1 mg/kg/h and only few patients failed possibility of reducing the cumulated effort of Bonorino Udaondo, Buenos Aires, ARGENTINA, to achieve symptom control. Conclusion: continuos breathing or decreasing the Marta Junin, Hospital Bonorino Udaondo, Propofol has shown to be a valuable drug in the perception of exertion would be of major Buenos Aires, ARGENTINA, Facundo Pereyra, treatment of these difficult symptoms and we benefit in oncological dyspnoeic patients, Hospital Bonorino Udaondo, Buenos Aires, provide clinical experience and some clinical namely in presence of a cachexia-asthenia- ARGENTINA, Rafael Brizuela, Hospital Bonorino guidelines on how to handle this safely in end complex. METHODS: We present the Udaondo, Buenos Aires, ARGENTINA of life care. preliminary results of a pilot study on the application of ENDS in oncologic dyspnoeic Objective: Inadequate control of salivary flow patients. Patients with asthma or chronic (ICSF) occasionally appears in cancer patients, Abstract number: 595 obstructive pulmonary disease were excluded. leading to drooling or chocking, and impairing Presentation type: Poster Nine dyspnea complaining patients were the quality of life. Usual treatments include Poster number: P181 included in this pilot study. The ENDS were anticholinergic drugs, although there is lack of applied at 8 AM and at 4 PM. Perception of scientific evidence supporting it, and further PAINFUL BONE METASTASES – A dyspnoea was assessed 12 hours after the first controlled studies have been recommended. A PROSPECTIVE OBSERVATIONAL application of the ENDS, using a Likert scale: 0 – randomized placebo-controlled, double-blind COHORT STUDY no efficacy, 1 – little, 2 – moderate, 3 – good. crossover study was designed to evaluate the The tolerability of the ENDS was assessed by: 0 – effectiveness of sublingual atropine in the relief Hazel Pearse LEEDS, GREAT BRITAIN, STEVE bad tolerability, 1 – little, 2 – moderate, 3 – of ICSF in patients with upper digestive cancer. OXBERRY, YORKSHIRE DEANERY UK, LEEDS good. Finally, we also asked the patients Methods: Twenty two consecutive patients with KIRSTEN SAHARIA, YORKSHIRE DEANERY UK, whether they wished to carry on using the upper digestive cancer who complained of ICSF LEEDS CHARLOTTE CLARE, YORKSHIRE ENDS. The therapeutic strip application was >3/10 (VAS 0–10), no longer receiving oncologic DEANERY, LEEDS DEBBIE ROYLE, YORKSHIRE simply added and any other treatment provided treatment, were admitted to the study and DEANERY, LEEDS was not changed otherwise. RESULTS: As a randomized to receive atropine sulphate 0.5mg result of the application of ENDS one patient q6h (two drops) or equivalent drops of placebo Background: Incident pain related to bone perceived a good improvement of dyspnoea, during 48h. After a wash-out period of 48h metastases is a problematic symptom to treat. three moderate, two little and three none. patients were crossed over to the alternate regime The difficulty in treating this type of pain is Tolerability was good for four patients and for 48h. Impact of sialorrhoea (primary reflected in the large variety of treatment moderate for other four. One patient outcome) and choking, interference with daily modalities recommended. We present a complained of a mild local itchiness but and social activities and global impact from ICSF prospective observational study of patients decided to continue. Seven out of nine patients (secondary outcomes) were evaluated by VAS at presenting to palliative care services with decided to carry on with the application of the beginning of the study and at the end of each painful bone metastases. Aims of study: To ENDS afterwards. CONCLUSIONS: ENDS may intervention period. Adverse effects and patients´ determine the patterns of pain severity at rest be useful in cancer patients with dyspnoea. preference were evaluated too. Results: No and on movement over time and which However further research is needed. With statistically significant difference between groups treatment modalities are employed. In addition regard to the favorable cost/benefit profile a (atropine and placebo) was found for the impact we were interested in ascertaining any trial with ENDS may be considered as an of sialorrhoea nor any of the secondary correlations between bone pain at rest, bone adjunctive treatment in dyspnoeic patients outcomes. Mean score for sialorrhoea were 59.68 pain on movement and functional ability. specially in patients suffering from dyspnoea (S.D. 28.52) and 34.95 (S.D.27.68) at baseline and Methods: This is a prospective observational related to muscle weakness in the after atropine; 62.19 (SD. 27.59) at baseline and cohort study of patients referred to palliative astenia–cachexia syndrome. 40.67 (S.D. 30.53) after placebo (p 0.58). No care services across the Yorkshire region. differences in patients’ preference nor severe Patients were followed up for one year or until toxicity were reported. Conclusions: We death. At each assessment information Abstract number: 597 conclude that in this population the atropine regarding pain scores at rest and on movement, Presentation type: Poster dose used failed to produce an improvement in functional ability and therapeutic interventions Poster number: P183 subjective measures of the symptom when were recorded. Findings: Thirty two patients comparing with placebo, both in terms of were followed up for a mean of 22 weeks (range Calcium Conundrum: Not all relieving sialorrhoea and chocking and of 2–52). There were 704 patient follow-up weeks hypercalcaemia in malignancy is reducing the interference of the symptoms on in total. There were 19 different treatment hypercalcaemia of malignancy daily activities and social relationship. modalities employed. There were strong correlations between pain at rest and pain on Marijtje Drijfhout, WL, S&F Palliative Care movement. There were no significant Services, Southport, GREAT BRITAIN, Karen Abstract number: 599 correlations between functional ability and pain Groves Presentation type: Poster at rest or movement. Discussion: Our study Poster number: P185 demonstrates the complex management of This poster depicts four patient histories. All four patients with bone pain. This is the first study were referred to the palliative care services with Clinical and translational research in that highlights the correlation between pain at hypercalcaemia. 1. A patient who had the palliative care: a phase 1 study of the use rest and pain on movement in patients with classical presentation and pathology associated of Infliximab (Remicade®) for fatigue in bone metastases in a palliative care population. with hypercalcaemia of malignancy. We discuss advanced cancer. It highlights the need for intensive follow-up of his treatment, response and outcome. 2. A these patients as they require multiple patient with hypercalcaemia and atypical Adrian TOOKMAN, Palliative Medicine, interventions to help control their pain. This symptoms who turned out to have primary London, GREAT BRITAIN, Philip Lodge, data can also be used to power further hyperparathyroidism. We discuss follow up, Edenhall Marie Curie Hospice, London, GREAT interventional studies. referral to endocrinologist and outcome. 3. A BRITAIN, Louise Jones, Edenhall Marie Curie patient with hypercalcaemia and no symptoms, Hospice, London, GREAT BRITAIN who was found to have vitamin D intoxication. This was the consequence of the medication Background: Fatigue is common in palliative prescribed to him for his concurrent renal failure. care patients. The inflammatory cytokine We discuss treatment, follow up and outcome. 4. Tumour Necrosis Factor alpha (TNF-α) may be a A patient who had hypercalcaemia and renal mediator. Infliximab (Remicade®) is a chimeric failure. He had a low phosphate level suggesting monoclonal antibody to TNF-α licensed for secondary hyperparathyroidism but proved to treatment of Crohn’s disease and rheumatoid

128 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

arthritis. We present the results of a pilot study possibility can avoid the placement of a second paracentesis and a permanent percutaeneous of the effect of Infliximab on fatigue. Method:17 burdensome catheter. drain (PPD). The use of a PPD is a relatively new advanced cancer patients (age 42–82 years, all option. We evaluated our experience with the tumour types) scoring over threshold on the PPD over the last two years. Methods: A catheter Fatigue Severity Scale (FSS) (Stone et al 1999) Abstract number: 601 was placed percutaeneously for permanent recruited from a London hospice (those with Presentation type: Poster drainage. Patients may drain the ascites specific risk factors were excluded) received Poster number: P187 intermittently or continuously. Patients were 5mg/kg Infliximab intravenously, repeated 4 followed after placement of the PPD. Medical weekly if there was clinical improvement. Each Implementation of Computerised Tools in records were studied after death. Results: Since time measures of fatigue, appetite, body mass, Health Care Units – a systematic review June 2002 13 patients received a PPD, 12 of performance, quality of life, depression, pain, The Pat C - Project them had been treated with regular paracenteses serum TNF alpha and leptin levels were before (1–5, every 1–30 days). One patient recorded. Serum was analyzed for TNF-α gene Beate André, Department of Cancer Research drained the ascites continuously, the others promoter polymorphisms. Treatment with and Molecular Biolog, Trondheim, NORWAY, intermittently (varying from once daily to once Infliximab was discontinued if serious adverse Gerd Inger Ringdal, Department of psychol. a week). Eleven patients were treated by a PPD effects were reported. Results: 6 patients reported NTNU, Trondheim, NORWAY, Toril Rannestad, until death (mean 45 days, range 6–154 days). subjective clinical benefit. and 4 showed greater Faculty of nursing, Sør-Trøndelag University Replacement was necessary in 3 patients. In one than 20% reduction in FSS (primary outcome) 4 College,, Trondheim, NORWAY, Jon Håvard of these 3 patients the PPD was replaced twice, weeks after first treatment. 4 patients died Loge, Dep. of Behaviou. Scienc. in because of dislocation and ascites leakage, during the study, 1 due to disease progression, 1 Med.,University of Oslo, Oslo, NORWAY, Stein respectively. The reasons for replacement in the possibly due to adverse effects of treatment Kaasa, Department of Cancer Reseach. and other 2 patients were occlusion and insertion of (acute infection) and 2 from causes probably Molecu. Biolog,NTNU, Trondheim, NORWAY the PPD in a pocket. Complications, which unrelated to treatment (cerebral infarct and could be treated conservatively, occurred in 5 myocardial infarction). 8 treated patients died Background: Symptom treatment is one of the patients: ascites leakage in one and occlusion in from disease progression after completing the primary goals in palliative care. There are data 4 patients. In these 4 patients the PPD could be study. 5 treated patients remain alive. Secondary showing that lack of systematic symptom re-opened by flushing it. In 2 patients the PPD outcomes (change in appetite, body mass, assessment hinders optimal symptom relief. was removed: in the first because ascites mood, pain, QOL, serum TNF alpha and leptin, Symptom assessment can be facilitated by the production had stopped; in the second because genetic polymorphisms) showed no emerging use of computer based registration. However, of high viscosity of the ascites. In the last patient pattern. CONCLUSIONS: Numbers are small, the attitude to use new technology and intermittent punctures were performed the group heterogeneous,and results are computers vary and several studies have successfully thereafter. Conclusion: Permanent 9 APRIL descriptive. A few patients showed clinical indicated that resistance among health care percutaeneous ascites drainage is a satisfying benefit but preliminary data are inconclusive. providers is a major obstacle. The goal of the intervention for advanced cancer patients in the Detailed examination of individual responders present study is to obtain knowledge about palliative phase. It enables patients to limit the (disease or metabolic factors, or proteomics) different factors that can promote or hamper hospital visits. might add to knowledge from other, ongoing the process of introducing new technology in phase I and phase II studies of infliximab in routine clinical practice. cancer patients. Methods: During a literature study we have Abstract number: 603 SATURDAY identified and described categories of Presentation type: Poster importance. A systematic search was conducted Poster number: P189 Abstract number: 600 employing the following search terms: barriers, Presentation type: Poster computers, doctors, nurses, new technology, TREATMENT OF NAUSEA AND Poster number: P186 attitudes, health, palliative, pain, oncology, VOMITING BY THE THREE STEP cancer, man-machine-systems. Eleven studies ANTIEMETIC LADDER IN PATIENTS Technical tools in palliative Home Care: met the inclusion criteria (description of WITH ADVANCED CANCER Evaluation of the Venflon® Catheter. implementation of computerised technology in a hospital ward, systematic approach, Wojciech Leppert, Chair and Department of Johan Van den Eynden, palliative physician, evaluation of the implementation) and were Palliative Medicine, Poznan, POLAND, Network of Palliative Care Waasland and included in the review. Slawomir Pawel Wozniak, Palliative Care Nursing Home De Plataan, Flanders, Belgium Results: Barriers against computer technology Department, Down Silesian Oncology Centre, was reported as negative attitude or resistance Wroclaw, POLAND, Jacek Luczak, Chair and Background: The use of some technical devices (N=5). A concern was fear of reduced quality of Department of Palliative Medicine, Poznan at palliative home care can add a lot of comfort patient care (N=3), however significant University of Medical Sciences, Poznan, to the patient. Aim: Improvement of comfort improvement in quality of care planning after POLAND, Eleonora Mess, Palliative Care and independence of the palliative patient for the implementation was reported (N=1). The Nursing Department, Chair of Clinical Nursing, non oral drug administration. Material and challenge of the role adjustment process can be Public Health Faculty, Medical Academy, Method: The Venflon® catheter (VC) is a related to disturbance of traditional patterns Wroclaw, POLAND catheter that has two connection points: one for and changes in established routines (N=6). continuous infusion (which can be locked by a Knowledge may influence on the process and Introduction: We propose three step antiemetic cap in case of no use) and one for bolus both skills and utility must be considered, lack ladder: the first step metoclopramide, injection. The VC. Can be used subcutaneous, as of training was reported (N=3) and haloperidol and tiethylperazine, the second step a stand alone or in combination with a syringe understanding was connected to user dimenhydrynate, dexamethasone, driver. Both home and residential settings for acceptance (N=3). levomepromazine and hyoscine butylbromide, elderly were analysed. Patient and caregiver Conclusion: There is an imperative need for the third step: setrons, and satisfaction has been evaluated. History: development of a training program if benzodiazepins. Aim of the study: Assessment of Continuous subcutaneous infusion of drugs by a implementation shall be successful. the usefulness of the three step antiemetic ladder syringe driver is known to be comfortable and in the treatment of nausea and vomiting (N & V) used for more than ten years. Stainless steel in patients with advanced cancer. Material and butterfly needles had to be changed after a few Abstract number: 602 Methods: Assessment of the treatment of N & V days because of local irritation. Therefore many Presentation type: Poster from different causes in 420 patients with palliative care teams just use the intravenous Poster number: P188 advanced cancer. The intensity was assessed by catheter. The higher flexibility makes this verbal scale: 0 – lack, 1 – weak, 2 – moderate, 3 – catheter compared to the stainless steel butterfly Permanent Percutaeneous Drainage of strong intensity of N & V. Symptoms were needle much more comfortable for the patient Ascites in the Palliative Phase assessed three times: (1) at the beginning of care, and can be longer used in loco (7–14 days). (2) during the treatment and (3) at the last week Implementation of the VC. has an additional Helen De Graaf-Waar, Medical Oncology, of life. The treatment was beneficial if there was advantage for the administration of drugs that Rotterdam, NETHERLANDS, L. van Zuylen, decrease or no change in the intensity of don’t need a continuous infusion but can be Erasmus MC, Rotterdam, NETHERLANDS, symptoms when there was no or mild intensity given in a bolus injection(fi.dexamethasone, P.M.T. Pattynama, Erasmus MC, Rotterdam, of N & V. The treatment was judged as failure furosemide) Conclusion: The subcutaneous NETHERLANDS, N.C. Reijm, Erasmus MC, when increase in N & V intensity or no change in injection technique can easily be learned by the Rotterdam, NETHERLANDS, C.C.D. van der Rijt, moderate or strong N & V was observed. Results: patient and/or family caregivers. This results in a Erasmus MC, Rotterdam, NETHERLANDS In comparison of (2) to (1) assessment, beneficial considerable improvement in the management results were in 345 (82%) patients: improvement of breakthrough pain. There was no more Introduction: In the palliative phase 15–50% of in 227 (54%), no change in mild N & V in 118 discomfort compared to the normal intravenous cancer patients develop ascites. Treatment is (28 %) patients. Lack of effect (N & V remaining catheter and the duration of local use was symptomatic. Technical options are a moderate and strong or more intense) was comparable. This VC with double connection peritoneovenous shunt, high volume observed in 75 (18 %) of patients. In comparison

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 129 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Posters

of (3) to (2) appraisal, beneficial effects were Medicine, Medical University of Poznan, have since died), 16 were seen and advised but achieved in 357 (85 %) patients: improvement in Poznan, POLAND, Anna Oronska, Lower disease progressed and they died during follow 118 (28 %), no N & V in 105 (25%), no change Silesian Oncology Center, Wroclaw, Wroclaw, up and 9 needed other support. The mean (mild N & V) in 134 (32%) patients. Lack of effect POLAND number of interventions was 3 (1–12). Mean was observed together in 63 (15%) patients. survival from first intervention was 98 days Conclusions: 1. The treatment of N & V INTRODUCTION & OBJECTIVES: Clinical (1–358). 7 patients are still alive. Although all according to the proposed three step antiemetic experience suggests that optimal palliative care patients descrfibed subjective benefit from the ladder is beneficial in over 80 % of patients with can effectively manage the symptoms of cancer intervention, objective assessments are difficult advanced cancer. 2. In above 15 % of patients patients (pts) during most of the course of the to obtain because of the progressive nature of control of N & V was unsatisfactory. More disease. PATIENTS & METHODS: This paper their disease. This should not deny such intensive treatment including drugs with assesses the incidence and prevalence of 14 patients receiving this type of programme. (i) supportive therapies and seeking new, more symptoms and effectiveness of symptom Corner et al; Non-pharmacological intervention effective antiemetics in this group of patients is control for 803 pts with advanced cancer for breathlessness in lung cancer Palliat.Med recommended. treated in Palliative Care Team in Wroclaw 1996; 10:299–305. during two years. Pts were divided on subgroups related to the primary site of the cancer: Abstract number: 604 gastrointestinal, gynecological, urological, head Abstract number: 607 Presentation type: Poster and neck, lung, breast and others. Results: Pts Presentation type: Poster Poster number: P190 were admitted late, with significant impairment Poster number: P193 in physical (activity) efficiency, 25% died THE EFFECT OF COMPLEX DECONGESTIVE within 3 weeks; in many cases it was the cause Depression – Grief – Demoralization: what THERAPY (CDT) ON ADVANCED CANCER of problems in symptom control. Pts with means sadness in terminally ill patients? PATIENTS WITH LYMPHOEDEMA (LE). advanced cancers were polysymptomatic. Most frequent symptoms were: weakness – 96%, pain Imke Strohscheer, Section of Palliative Care, Tomasz Gradalski, St Lazarus Hospice, Krakow, – 89%, loss of appetite – 81%, insomnia – 63% Graz, AUSTRIA POLAND, Dorota Rybak, St Lazarus Hospice, and constipation – 61%. Mean number of Krakow, POLAND symptoms per patient was 6, 7. Factors that The development of a major depression occurs contributed to the symptoms were: age, in nearly one third of all patients with cancer in LE is a common symptom in patients with performance status, and primary site of cancer. different stages of their disease with increasing advanced cancer. CDT (manual lymph drainage Five symptoms were related to age: confusion, frequency during progression of disease. [LD], compression therapy [CT] and pressure sores, breathlessness, loss of appetite Despite of good therapeutic options and physical/breathing exercises [PE]) is an effective and dysuria. (more frequent in pts >65 y old). effectiveness of medical therapy, only few of management of radically treated cancer patients Pressure sores, confusion, urinary symptoms, these patients receive an adequate therapy. (e.g. postmastectomy). The aim of this study was dysphagia, anorexia, constipation and weakness Several reasons cause this phenomena. One to assess the effectiveness of CDT on patients were related to impaired physical activity cause could be, that feelings like grief and with progressing lymphatic insufficiency of (ECOG>=3.). In the each of the six groups of anxiety or symptoms like demoralization and advanced cancer. 15 patients (aged 48–82, primary site cancer some related symptoms fatigue are very difficult to distinguish from the median 60 years) of Karnofsky Performance were detected. Symptom control was effective in clinical diagnosis of a major depression for Status median score 60 (20–60) were treated with the treatment of bleeding, insomnia, physicians and other medical staff without a 2-week course of CDT (Monday–Friday). In one constipation, nausea/vomiting, confusion, special psychiatry knowledge. There exist some case CDT consisted only of CT due to discomfort. diarrhea and loss of appetite. Pain treatment strategies for differentiation between the Within the treated upper limb edema group with the WHO ‘analgesic ladder’ was effective normal process of grieving, physical symptoms there were 6 women with advanced breast cancer in 82% CONCLUSIONS: The management of like fatigue and the diagnosis of a major and 1 with malignant melanoma of the thumb. multiple symptoms in pts with advanced cancer depression. This trial wants to point out the In the lower limb edema group there were 3 cases is one of the most challenging aspects of care. differences between these symptoms. These of cervical uterine cancer, 3 cases of malignant Multidisciplinary approach and strategies could be helpful for assessment of the melanoma spreading to the inguinal nodes, 1 individualization is required. patient’s situation which lead to a sufficient case of skin cancer of the lower abdomen and 1 therapy and psychological support. Especially in case of hepatocarcinoma also spreading to the terminal ill patients with short life expectations inguinal nodes. On both (upper or lower) limbs Abstract number: 606 it is very important to have good instruments symmetrical circumferences measurements were Presentation type: Poster for diagnosis of psychiatric disorders. This can taken every 4 cm, then the volume of the limbs Poster number: P192 led to a sufficient therapy to improve quality of was calculated using a simplified formula for the life of our patients. frustrum. The effect of the CDT was measured by Non-pharmacological management of end comparing the volume of the affected limb stage breathlessness before and after the last session of the Abstract number: 608 physiotherapy and also by comparing the E. Tim Peel, Department Of Palliative Medicine, Presentation type: Poster volume of the edema (difference between the ill North Shields, Tyne And Wear, GREAT Poster number: P194 and the healthy limb). Additionally, the quality BRITAIN, Gbenga Afolabi, North Tyneside of life (QoL) was assessed using the ESAS scale. A General Hospital, Tyne and Wear, GREAT Treatment of paroxysmal nausea marked reduction of the affected limb (from BRITAIN, Sonia Connors, North Tyneside and vomiting in a patient with median 8260,9 ml to 7681,1 ml; Wilcoxon paired General Hospital, Tyne and Wear, GREAT meningeosis carcinomatosa test, P=0,05) and also of the size of the edema BRITAIN (from median 2512,5 ml to 1189,4 ml; P=0,001) Imke Strohscheer, Section of Palliative Care, was seen. In the QoL the mean ESAS level (1–10 Non-pharmacological breathlessness Graz, AUSTRIA, Gian Dominico Borasio, points) decreased from 3,2 points to 2,7 points; programmes have been advocated for a number Interdisciplinary Center of Palliative Medicine P=0,1. We did not observed marked correlations of years, and usually follow 1:1 sessions over University of Munich, Munich, GERMANY, between volume changes and QoL. CDT plays an 3–6 weeks in an outpatient setting (i). We report Hellmut Samonigg, Section of Palliative Care important role in the hospice care. It markedly our 2 year experience of a community based Medical University Graz, Graz, AUSTRIA reduces the affected limb volume and decreases flexible programme for breathless patients with the edema volume without worsening the QoL. advanced disease. 43 patients (14 female) were Paroxysmal syndromes are well-known in included: mean age 71 (range 50–83). Most had neurology, e.g. as manifestations of multiple intra-thoracic malignancy (23 lung cancer, 8 sclerosis (MS). The literature reports a few cases Abstract number: 605 mesothelioma, 9 other secondary cancer) and 3 of paroxysmal nausea and vomiting in MS Presentation type: Poster had end stage heart failure. The mechanism of patients. These symptoms appear to be are Poster number: P191 breathlessness was tumour related in 24, due to induced by visual perception of movement in other medical conditions in 15, anxiety related susceptible individuals and are thought to be ASSESSMENT OF PREVALENCE OF in 22 and treatment related in 4. Interventions due to ephaptic transmission of discharges SYMPTOMS AND EFFECTIVENESS OF included advice about coping strategies, within areas of demyelination. We report about SYMPTOM RELIEF for 803 PATIENTS WITH planning, pacing, breathing techniques and a patient with meningeosis carcinomatosa who ADVANCED CANCER relaxation. In addition information about other presented with headache, vomiting and services (social work, psychology, occupational photophobia. Leptomeningeosis from breast Slawomir Pawel Wozniak, Lower Silesian therapy and support groups) was given. Of the cancer was diagnosed. The patient needed high Oncology Center, Wroclaw, Wroclaw, POLAND, patients referred 7 were not seen (6 died, 1 dosages of opiates to control pain, while the Jacek Luczak, Chaire of Palliative Medicine, refused), 19 received some or all of the nausea and vomiting were refractory to therapy. Medical University of Poznan, Poznan, interventions described above and were The clinical suspicion of a paroxysmal POLAND, Wojciech Leppert, Chair of Palliative subsequently discharged (though they may syndrome prompted a trial of carbamazepine.

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Nausea and vomiting stopped after a first dosage factors. The purpose of this study was to Hospital st. Radboud, Nijmegen, of 100 mg. The EEG showed paroxysmal investigate when patients, medical and NETHERLANDS, Jaap Schuurmans, Palliative excitations. The next day the syndrome paramedical personnel are convinced of a consultancy team, Nijmegen, NETHERLANDS returned, and we started a medication with 400 situation of unbearable and intractable mg of carbamazepine per day. This allowed the suffering in terminally ill patients. Methods A Many patients in palliative care may encounter patient to sit and eat without vomiting. Thus, still going study, according to the Delphi episodes of nausea, vomiting, abdominal pains paroxysmal syndromes can be the cause of methodology, is performed in a panel of 20 and constipation mimicking a bowl obstruction. apparently therapy-refractory nausea and persons, non medical, medical and paramedical But complete (obstruction) ileus is an infrequent vomiting in patients with cerebral tumor practitioners, spread across the Netherlands. problem (3%) in the palliative setting. Some involvement, and respond well to Their reasoned opinions are expressed in three patients will be cured by surgery, but many will anticonvulsant medication. written rounds of questioning. The main not improve after laparotomy and may benefit questions are concentrated on finding concepts from non-surgical interventions only. Often it to define unbearable and intractable suffering. remains unclear which factors may have lead to Abstract number: 609 Results and Discussion The results will be a final medical decision. We developed an Presentation type: Poster presented at the conference. The preliminary algorithm (A) to aid the doctor in the diagnosis Poster number: P196 results show that answering the questions is of true ileus and in the decision which terminal difficult. However, defining unbearable and ill patient should be treated either by surgery or Nausea and Vomiting – the development intractable symptoms in terminally ill patients conservative measurements initially. The of clinical guidelines based on current is crucial in taking medical decisions. different steps were based on literature search practice and literature and completed after discussion with professionals. Secondly A was tested in all Caroline Usborne Wirral, GREAT BRITAIN, Abstract number: 611 successive patients admitted for suspected ileus Laura Chapman, Queenscourt Hospice, Presentation type: Poster in an intervention palliative bed of a university Southport, GREAT BRITAIN, Andrew Dickman, Poster number: P198 hospital during a 3 months period. The registrar Willowbrook Hospice, St. Helens and Knowsley, of the unit was instructed in the use of A; the GREAT BRITAIN Pre- emptive breath therapy in treatment was based on his decision and was combination with relaxation therapy at discussed daily with a senior palliative care Background Nausea and vomiting are common terminal cancer patients in a hospice doctor (author). Seven patients were identified symptoms in palliative care and can have a fulfilling the criteria. The mean age was 61 significant impact on quality of life. However, Jacob Van Den Broek Amsterdam, (42–75) years, 3 males; one patient suffering there can be wide variation in how these NETHERLANDS, Jaap Gootjes, hospice kuria, abdominal metastases of lung cancer, 3 had 9 APRIL symptoms are managed. Objectives 1. To review Amsterdam, NETHERLANDS, Wouter primary gynaecological tumours and 3 a current management of nausea and vomiting by Zuurmond, hospice kuria, Amsterdam, malignancy of the digestive tract. Six patients palliative care specialists. 2. To develop practice NETHERLANDS, Corry van Tol – Verhagen, benefited directly from this stepwise approach, 1 and evidence-based guidelines for the hospice kuria, Amsterdam, NETHERLANDS patient developed alarming symptoms of blow- management of nausea and vomiting. Method A out of the coecum and was the only patient who multicentre prospective study, over a two-month Introduction: During the last six weeks at the needed surgery. Relief was reached with a mean period, of palliative care patients from the terminal phase about 70% of all cancer-patients of 3.5 (2–5) days. Overall survival was 21 (3–120) SATURDAY community, hospital and community. A doctor are suffering from respiratory problems. days with 3 patients dying from other causes (3, or nurse completed a proforma on each patient Dyspnoea is a very difficult to treated symptom. 10 and 120 days) and 4 dying from ileus (7, 14, with symptoms of nausea or vomiting during Studies also shows that there is a need for a 30 and 60 days). The registrar was confident in this period. The proforma recorded patient method to prepare patients and caregivers for his decisions and felt comfortable during demographics, presumed underlying cause of these kind of specific symptom in different kind discussions with consultants. This confirms the the symptoms, investigations undertaken, and of situations and to increase(in this way) the initial question that using an algorithm with pharmacological management. Symptoms were quality of life. Respiratory problems are stepwise approach of a patient presenting with scored over a ten-day period. The scale used was distressing and frightening for both the patients ileus in the palliative care setting will be of based on the PACA tool. Any changes to the and the caregivers Method: In three hospices in benefit for both doctor and patient. management of the symptoms were the Netherlands 100 cancer-patients with a life documented. Results Proformas were completed expectation less than six weeks will be treated by on 90 patients. In 39% the cause of the nausea a physiotherapist. The method contains a Abstract number: 613 and vomiting was felt to be multifactorial. The specific individualized intervention, especially Presentation type: Poster majority of patients (91%) had their breath-therapy in combination with relaxation- Poster number: P200 biochemistry checked. There was wide variation therapy, advices and instructions. To increase in the drugs used for specific causes of the the interdisciplinary character, members of an SUBCUTANEOUS ANTIBIOTHERAPY WITH symptoms, though most patients (81%) with interdisciplinary team contribute in these THIRD GENERATION CEPHALOSPORINS. A moderate or mild symptoms were receiving their methods. Specific functional instructions for PROSPECTIVE STUDY WITH medications by the parenteral route. After 4 days these interventions are given by a HOSPITALIZED AND HOME-BASED of specialist intervention, symptoms were physiotherapist to all members of the PALLIATIVE PATIENTS. controlled in only 32% of patients. Conclusion interdisciplinary team. The control group This study, along with a review of the current contains a dossier-research of 100 comparative Carlos Centeno, Programa de Medicina literature, has lead to the development of cancer patients, which had not been treated in Paliativa, Pamplona (Navarra), SPAIN, Isabel standards and guidelines for the management of this way. Results and Conclusions: First Galriça, Equipo de Cuidados Continuados, nausea and vomiting, which have been outcomes shows that pre-emptive breath- Centro de Salud Odivelas, Lisbon, PORTUGAL, disseminated across the cancer network. therapy and specific individualized advices and Lourdes Sánchez, Unidad de Cuidados instructions gave the patients more self-control Paliativos, Hospital Los Montalvos, Salamanca, during both restsituations and activities. SPAIN, María del Carmen López, Equipo de Abstract number: 610 Moreover, the patients developed more self- Cuidados Continuados, Centro de Salud Presentation type: Poster confidence and less fear in situations of Odivelas, Lisbon, PORTUGAL, Francisco Vara, Poster number: P197 dyspnoea or related symptoms. Pre-emptive Unidad de Cuidados Paliativos, Hospital Los breath-therapy seems to show an increased Montalvos, Salamanca, SPAIN Unbearable and intractable suffering in quality of life by better breathing and energy terminally ill patients consumption. The objective of this prospective study was to evaluate the feasibility and tolerance of Jaap Gootjes Amsterdam, NETHERLANDS, subcutaneous ceftriaxone in terminal patients Wouter Zuurmond, hospice kuria, Amsterdam, Abstract number: 612 both hospitalised and home-based based on NETHERLANDS, Corry van Tol – Verhagen, Presentation type: Poster pharmokinetics articles already published. hospice kuria, Amsterdam, NETHERLANDS Poster number: P199 Ceftriaxona Combino Pharm 1–2g EFG was administered, from ampoules for intramuscular Introduction In palliative care direct symptom Algorithm for stepwise approach of the use (ceftriaxone 1g, sterile water 3.5ml and management has to be one of the priorities in patients with ileus in palliative care lidocaine hydrochloride 35mg), diluted in treating terminally ill patients. Nevertheless 50–100cc saline solution, administered over symptom management may be uneventful and Constant Verhagen, Medical oncology / 10–20 minutes using a 21G subcutaneous the patient is suffering to a great extent. The palliative care team, Nijmegen, NETHERLANDS, butterfly needle exclusive for the preparation quality of symptom management may vary: the Sasja Mulder, University Hospital st Radboud, on abdominal region The group at the Palliative knowledge and experience of the medical and Nijmegen, NETHERLANDS, Anne Simons, Care Unit at the Hospital Los Montalvos, paramedical personnel, the possibilities to University Hospital st Radboud, Nijmegen, Salamanca (SA) treated 12 hospitalised cancer perform adequate treatment are important NETHERLANDS, Jose Jacobs, University patients (10+/–4.5 days). The Group from

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 131 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Odivelas, Lisbon (L) treated 32 patients (9 with cancer, 23 without) in their homes (3+/–1.88 days). Parenteral antibiotherapy was indicated in the majority of cases for respiratory infections with fever (38º+/–1 in SA, 37.7º C+/–1.2 in L) or, only in L group, for symptomatic treatment of respiratory secretions. The subcutaneous route was indicated where patients presented veins in a poor state (9 patients), agitation which advised against IV administration (4), rejection of IV treatment (5), deterioration of the patient, making the IV route unadvisable (19) or for home based patients (32). A total of 128 infusions were studied in SA and 96 in L. In no instances was treatment suspended due to local intolerance and signs of local irritation (12of 224 infusions) were managed without complications by changing the injection site (reddening (7), indurations (1) or bleeding (4)). Local discomfort was 0/10 in SA and 1/10 in L. The temperature at the end of study was SA 37 º, L 37.3. In terminal phase patients, when it be indicated, subcutaneous ceftriaxone administration is an alternative to intravenous administration, both for hospitalised and home-based patients.

132 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 ABSTRACTS OF INVITED LECTURES, ORAL PRESENTATIONS AND POSTERS

10 APRIL 2005 SUNDAY 10 APRIL 10 SUNDAY

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

134 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 614 Abstract number: 616 Furthermore, at the current time, the results of Presentation type: Invited Presentation type: Invited opioid rotation are completely unpredictable. Poster number: Poster number: Indeed, patients not infrequently deteriorate following opioid rotation. Confusion with confusion: Delirium OPIOID ROTATION – DOES IT WORK? or not? Further research is required to determine the Sebastiano Mercadante, La Maddalena Cancer role(s) of opioid rotation in clinical practice. Raymond Voltz, Department of Palliative Center Italy One important strand of research is Medicine, Germany pharmacogenetics, where researchers are While morphine remains the opioid of choice attempting to identify specific genotypes that One of the most prevalent neuropsychiatric for its familiarity, availability, costs rather than will predict the response (analgesia / side symptoms in oncological patients in palliative proven superiority, a substantial minority of effects) of individual patients to individual care is confusion. ‘Confusion’ is not a disease patients do not have a successful outcome opioids. However, clinical studies are also entity, but a symptom. It can be a sign of an because of excessive adverse effects, inadequate required, including clinical studies comparing epileptic seizure (non-convulsive status), analgesia, or a combination of both. Individual opioid rotation to other strategies. dementia, psychosis or – which is the most patients vary greatly in their response to prevalent reason in palliative care – delirium. In different opioids. Patients with poor analgesic the terminal phase, delirium is described in up efficacy or tolerability with one opioid will Abstract number: 618 to 80% of oncological patients. In 2/3 it is not frequently from the administration of another Presentation type: Invited recognised and therefore not treated adequately. opioid. Sequential opioid trials may be needed Poster number: In up to 50%, a reversible cause can be to identify the drug that yields the most identified and treated (e.g. drugs, hydration). favourable balance between analgesia and Social care – how important is it? Symptomatic treatment consists of general adverse effects. The biological basis for the measures (communication, environment) as individual variability in sensitivity to opioids is David Oliviere, Education and Training, well as of drugs (e.g. haloperidol, low-potency multifactorial. The frequency of opioid London, GREAT BRITAIN neuroleptics, benzodiazepines, which must be switching is increasing in acute palliative care used in a differentiated according to the units, probably as a consequence of a better The “social” introduces the wider context in probable causes). knowledge and an improved monitoring of the which palliative care operates. This brief In single cases, it may be very difficult to treat cognitive function in patients who receive presentation will locate “social” pain within an agitated delirium using conventional higher doses of opioids. Available equianalgesic “total” pain model and will conceptualise social measures. Therefore, besides severe pain and tables assist physicians to estimate the adequacy care as incorporating individual, family, group nausea, delirium is one of the most frequent of the doses when switching opioids. However, and community relationships. causes for the necessity of palliative sedation. these tables derive from the results of earlier This may be an ethically, medically and legally studies or relative potency ratios using single This includes society’s institutions, which justified measure in these exceptional patients. dose crossover Design. Moreover, differently determine not only the quality of housing, Several studies have shown that if done from what occurs in cancer management, these finance, recreation and care provision but also correctly, this palliative sedation does not studies focused on patients with a limited issue of discrimination and exclusion. The hasten death, and can therefore be distinuished opioid exposure, both in duration and dose. integration of social aspects with all other clearly from any form of active euthanasia. Thus, the applicability of these equianalgesic dimensions of the holistic approach is ratios during chronic opioid administration has emphasized. The process of assessing and been questioned in the last years, also on the intervening with social aspects must respect the Abstract number: 615 basis of a better knowledge of the basic symbiotic nature of socio-cultural, psycho- Presentation type: Invited mechanism of opioid tolerance. social and professional-patient partnerships. Poster number: Unfortunately, most studies regarding opioid The complexity of working in the area of social switching have been including different care will be demystified in the interaction with Delirium in palliative care, diagnosis indications, such as intolerable adverse effects the session’s participants. and treatment with good pain control, convenience, poor pain control and adverse effects, uncontrolled pain Augusto Caraceni, National Cancer Institute of with increasing doses of opioids, among others, Abstract number: 619 Milan, Italy so that the conversion ratios are hard to apply. Presentation type: Invited Relatively large series published on opioid Poster number: The problems and the opportunities posed by switching have reported a clear benefit using delirium to palliative care clinicians are unique. different opioid sequences, with an Role and importance of social work in Delirium is a syndrome which crosses the improvement in adverse effects in 70–80% of palliative care borders between, at least, neurology, psychiatry cases, using lower doses of opioids than geriatrics, intensive care, and internal medicine. expected, when considering the questioned Maria Wasner, Klinikum Grosshadern, Palliative care can brig an original contribution tables of conversion. Despite the lack of Germany to the definition and therapeutics of delirium, controlled studies, opioid switching seems a due to the high incidence of delirium in relevant instrument in cancer pain The main goal of palliative care is the advanced progressive illness and to the management. improvement of the quality of life of patients specificity of taking care of dying patients: and their families. From our practical delirium has been indeed described as a way of experience and research projects we know that dying. Delirium is a complex syndrome and Abstract number: 617 the physical aspect is only one factor APRIL 10 SUNDAY requires accurate assessment, diagnostic ability Presentation type: Invited influencing the quality of life of patients in and experience. It also has psychological and Poster number: palliative care. Psychological, spiritual and management implications which should social factors are also relevant. Research has involve nursing and support expertise for the Opioid rotation – does it work? shown that family and significant other social patient and the family. Accurate evaluation of relationships are extremely important for the risk factors and causes is paramount and in Andrew Davies, Royal Marsden Hospital UK individual Quality of Life of patients as well as particular palliative care specialists are called to caregivers. evaluate the ability of opioids of causing “Opioid rotation” (“opioid switching”, “opioid Social work is a central component of the delirium, their pathogenic role and the substitution”) is a strategy that is used to try to multiprofessional effort geared to address the strategies to avoid it. Pharmacological improve analgesia and / or reduce side effects needs of dying people and their families management is also very important a it can from opioid analgesics. Contrary to popular (holistic perspective, systemic approach, specific range from the conservative treatment of slight belief, the strategy is not a new one. Indeed, the methods, professional skills) and cannot be to moderate situation with neuroleptics to strategy was being utilised by palliative care replaced by other professions. Beside sedation. In conclusion, palliative care physicians in the late 1960s / early 1970s (and administrative tasks, communication is the clinicians have learnt early on to master pain probably beforehand). Nevertheless, the term main focus in this field. The combination of control, Cicely Saunders already pointed out at “opioid rotation” was only introduced in the person-oriented and solution-oriented working the beginning of the hospice movement, that early 1990s. methods is one of the specific strengths of other symptoms, and delirium in particular, social work. The social worker has to act as a were going to be as challenging and important Opioid rotation has become an established case manager, i.e. he/she has to work as in the clinical armamentarium of palliative management strategy. However, the evidence advocate, mediator and facilitator. care, and still today delirium remains one of base to support the strategy is limited. In The main tasks of social work in palliative those. particular, there is little evidence that this care are: strategy is more effective than other strategies, ● Information about possible support e.g. dose reduction (for opioid toxicity). ● Facilitating communication between patient,

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 135 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

family, and everybody involved fentanyl and s.r. oxycodon and hydromorphone been initiatives developed by the Project on ● Psychosocial rehabilitation of the patient and have been released in the recent years. Opioids Death in America, a nine-year foundation family through identification and activation are accepted as a cornerstone in the treatment supported effort in the United States to transform of existing resources of cancer pain. The annual national drug report the culture of death in America. This initiative ● Facilitating grief and bereavement describes a constant increase of opioid supported the development of physician, interventions. consumption in Germany over the last years, nursing and social work leaders, who would serve There is a dire need for psycho-social research indicating an improvement of pain as role models to develop and sustain palliative in palliative care: theoretical background for management. In this report of drug prescription care programs in academic medical centers and social work in palliative care is lacking, and little 1.6 million defined daily doses (DDD) of s.r. in a variety of clinical settings. research has been conducted on this topic so morphine had been prescribed in 1990 and this In this initiative, 87 Faculty Scholars, far. In times of diminishing resources, it number had increased to a peak of 15.6 million predominantly physicians and 6 nurses, becomes more and more important to DDD in 2001. While after 2001 the DDDs of s.r. developed programs within their academic demonstrate the efficacy of social work in this morphine decreased slightly, the amount of institutions ranging from palliative care services field. Moreover, research findings can help to other opioids prescribed increased even more. to palliative care units to clinical research develop interventions that can be tailored to the However, these data do not differentiate programs and policy institutes. Fourty-four specific needs of the patients and families. between prescriptions for cancer and non- social work leaders were appointed, who cancer pain. Therefore, conclusions on the bridged the gap between clinical and academic impact of overall increased opioid consumption social work programs serving as leading Abstract number: 620 on pain management can not be drawn. In fact, authorities on the role of social work in end-of- Presentation type: Invited results of a representative regional health life care. Poster number: insurance survey gave evidence of major Nursing leadership was fostered through the drawbacks. Predominately WHO-step 2 opioids development of educational programs among The Changing Face of Opioid and opioids with non-modified release were nursing associations, who supported broad Consumption in the USA prescribed and most patients received opioids educational initiatives for nurses in only for short periods of time. Continuous undergraduate, graduate and advanced level Declan Walsh, The Cleveland Clinic therapy with WHO-step 3 opioids was rare. The training programs. Foundation, Cleveland, Ohio, USA analysis of opioid prescription for cancer By creating role model leaders in palliative patients who died on their disease, care in the medical, nursing and social work The rapid increase in the use of morphine in demonstrated that those patients received less professions, the Project on Death in America the United States has been overshadowed by the than one DDD per day for pain treatment in the has left a legacy of committed individuals who large increase in the prescription of oxycodone last year of their life. These data suggest a non- form a formal and informal network and fentanyl. In specialists practice methadone adherence of established guidelines. The collaborating to advance the clinical, research is rapidly finding favor and this is likely to procedure of prescribing WHO-step 3 opioids, and programatic aspects of palliative care influence non-specialists and community even though a special triplicate prescription within the United States. prescribing in the near future. Progress has been form is still necessary, has undergone several made in working with state medical boards and revisions in the last years. Several restrictions other regulatory bodies in encouraging have been lifted. Despite of increasing opioid Abstract number: 622 physicians in prescribing opioids appropriately. consumption and alleviation of governmental Presentation type: Invited Notable advances have also occurred in the regulations, undertreatment of cancer pain is Poster number: education of pharmacists, nurses, and still a significant problem for many patients. physicians in safe opioid use. PALLIATIVE CARE IN EUROPE: A VIEW Challenges remain (even amongst cancer ACROSS THE BORDERS specialists) to ensure high quality opioid use. Abstract number: 621B Errors in opioid prescribing are frequent and Presentation type: Invited Michael Wright, International Observatory on multiple. Poly opioid use is still common, partly Poster number: End of Life Care, Lancaster, GREAT BRITAIN because of the general increased acceptance of opioid use. Recent acceptance of the role of How to establish palliative care programs Reviewing European palliative care methadone will challenge education, research, development presents methodological and clinical practice because effective use Stein Kaasa, Department of Cancer Research challenges due to various understandings of requires very different strategies to those taught and Molecular Medicine, Trondheim, Norway, ‘Europe’, different interpretations of ‘hospice’ for other opioids over the last 20 years. Kathy Foley, Memorial Sloan Kettering Cancer and ‘palliative care’ and disputed evidence on The development of and Cente, New York, USA the ground. Currently, several groups are dextromethorphan may influence prescribing engaged in such projects including an EAPC significantly if they are officially approved. There has been an discussion for several years task force. A study that focused on central and Availability of parenteral methadone is a on how to optimally establish programs in eastern Europe and central Asia gave rise to the continuing problem. Parenteral oxycodone is palliative care. This challenge is solved International Observatory on End of Life Care, unavailable in the United States. A sustained differently in various countries. In several formed in 2003 (www.eolc-observatory.net). In release formulation of hydromorphone has just European countries the strategy has been first to western Europe, most founding services were been approved. Various formulations of come establish national recommendations on established before 1990; in central and eastern and other opioids are under how to organise palliative care within each Europe (CEE), they emerged after the collapse of continuing investigation for utility in clinical country. Quite often have these initiatives have communism. Alongside the development of practice. been guided by individual pioneer programs. palliative care services has been the growth of The clinical, regulatory, and legal controversy Ten years ago a university based palliative organisations designed to provide support: concerning oxycodone has raised old fears and care unit was established in Trondheim, WHO has advocated for pain relief since the prejudices concerning opioid use. The final Norway. During the development process we early 1980s; EAPC represents over 50,000 effects of this are still unclear and have been able to complete the program with members; ECEPT promotes palliative care unpredictable. Appropriate use of opioids has an outpatient clinic, homecare program and development in CEE; OSI has worked towards improved substantially, and the future for recently a chronic unit/hospice in a nursing changes in health care policy; the UK Forum further progress appears bright. This must be home as a part of the close collaboration has brought together worldwide national accompanied by appropriate continuing between the hospital and the community associations; and NHPCO has assisted in laboratory and clinical research, systematic service. We have also established a standards development. Current issues centre education, and political wisdome. comprehensive research program with its base on opioid availability, reimbursement, and at The Medical Faculty with close collaboration standards development. The overriding ethical with basic scientists, clinicians and in several debate concerns euthanasia and physician Abstract number: 621 groups in the social sciences. assisted suicide. Challenges are identified as: Presentation type: Invited On the one hand individual initiatives are insufficient funding; low social and Poster number: important, however on the other it is important professional awareness of palliative care; poor to see programs as a part of the public health pain control; lack of trained staff; and the Opioid consumption – trend and changes care plan in order to have palliative care included absence of legislation. There is much to build as a part of the entire health care program. In on, however. Reports suggest that: training Rainer Sabatowski, Pain Clinic, Cologne, order not to be too vulnerable for political programmes flourish; pain relief is gradually GERMANY and/or economical shifts a long term strategy improving; re-imbursement issues are being not only building on program development, but addressed more fully; and there is growing The options for opioid therapy have expanded also on pre- and postgraduate formal teaching awareness of palliative care at the level of considerably within the last decade. New drugs within palliative care seems appropriate. government. In this scenario, the contribution and new drug application forms such as Another example of ways to foster the of imaginative activity across borders and transdermal fentanyl, oral transmucosal development of palliative care programs has barriers can only be beneficial.

136 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 624 neural structures. given modality as those choices are often made Presentation type: Invited Neuropathic pain in cancer differs from in patients presenting complex clinical pictures. Poster number: neuropathic pain in chronic neurological When oral, transdermal and parenteral opioids disorders, regarding time aspect, mechanism and adjuvant analgesics have been exhausted Pathophysiology of neuropathic cancer and associated nociceptive pain. Therefore, pain management approaches including spinal pain: pharmacological correlates useful treatment flowcharts should differ between delivery of analgesics may be an effective for the clinical arena those two scenarios. alternative. Spinal opioids alone or in combination with local anaesthetics will be CATHERINE URCH, DEPARTMENT OF discussed in details and issues of efficacy and PHARMACOLOGY, LONDON, GREAT BRITAIN Abstract number: 626 toxicity highlighted. 1. Staats P. Neural infusion Presentation type: Invited for pain control: When, why, and what to do Pain arising from nerve injury is a major Poster number: after the implant. Oncology 1999; 13: 58–62. 2. challenge for clinicians to treat and Meuser T, Pietruck C, Radbruch L, Stute P, neuroscientists to unravel. It can be divided into Pharmacological treatment evidence- Lehmann KL, Grond S. Symptoms during peripheral and central neuropathy for example based review of drug trials. Do we have cancer pain treatment following WHO- cancer invasion of brachial plexus (peripheral), clinical guidelines to offer? guidelines: a longitudinal follow-up study of metastatic lesion in spinal cord (central). symptom prevalence, severity and etiology. Pain Neuropathic pain has cardinal features Augusto Caraceni, National Cancer Institute of 2001; 93: 247–257. 3. Caraceni A, Portenoy RK, a clinically, allodynia, hyperalgesia, hyperpathia, Milan, Italy working group of the IASP Task Force on Cancer spontaneous pain and negative features Pain. An international survey of cancer pain including areas of numbness. Animal models Data on the efficacy of drugs for neuropathic characteristics and syndromes. Pain 1999; 82: attempt to mimic the symptoms of neuropathic pain derive mainly from controlled clinical 263–274. pain and offer a means of investigating the trials (CCTs) on non malignant chronic peripheral and central pathophysiological neuropathic pain conditions. In this area changes. In addition they offer a means of several metanalyses of CCTs support the Abstract number: 628 investigating the efficacy of drugs, although the efficacy of tricyclic antidepressants Presentation type: Invited correlation between animals and humans is (amitriptyline, desimipramine) and Poster number: never exact. This part of the symposium will of anticonvulsants (carbamazepine, phenytoin, concentrate on the basic pathophysiology of lamotrigine, gabapentin), recently also opioids How do organisations both help neuropathic pain. The majority of animal were tested in CCT for neuropathic pain and contribute to the stress of models are not necessarily cancer related, syndromes. Very few studies specifically individuals working in specialist except for the chemotherapy induced addressed the effect of pharmacological therapy palliative care settings? peripheral neuropathies and the unique in cancer pain with neuropathic features of cancer-induced bone pain. Few pathophysiology. One of the limitation in this Pam Firth, United Kingdom models of cancer induced central neuropathy field is the definition of neuropathic pain due exist and most information is extrapolated from to cancer, that is discussed by another speaker Introduction other animal models and symptoms from in this session. Another only partially resolved The way in which organisations attend to the clinical states. A general review of animal question is: is neuropathic cancer pain less needs of their staff as well as attending to their models as correlates with clinical efficacy will responsive to opioid analgesics – And a final primary role of caring for terminally ill patients also be presented. question addresses the clinical importance of and their families, are intertwined. combining adjuvants drugs to opioids in Creating a setting in which both staff and improving analgesia in patients with patients feel safe and contained, challenges Abstract number: 625 neuropathic pain due to cancer. Only two organisational structures. Presentation type: Invited clinical trials of good quality are available to Poster number: show a modest effect of amitryptiline in Discussion improving neuropathic pain due to cancer and The concept of the primary task can be useful Definition and diagnosis of neuropathic a clinically significant effect of gabapentin in in thinking about organisations and how they pain in cancer 51% of the days of administration, comparing work. Where institutions exist to help and care with 37% of response days with placebo, when for people there are multiple tasks and it can be Raymond Voltz, Department of Neurology and this drug is combined with opioids in patients difficult to define the primary task. However, it Interdisciplinary Palliative Care Service, with neuropathic cancer pain. The problems is important for any organisation to hold on to München, Germany posed by designing, performing and evaluating it, otherwise confusion and anti-task behaviour this type of analgesic trials will be discussed. can have affects on everyone and indeed can Neuropathic pain refers to pain mechanisms lead to the demise of the institution. thought to be related to pathology in the Thinking about organisations in this way somatosensory pathway, both in the peripheral Abstract number: 627 owes its origins to group relation theory. This and/or central nervous system. Presentation type: Invited paper will explore some ideas about large and Diagnosis of neuropathic pain in cancer relies Poster number: small group behaviour and examples for the on clinical examination (most important in authors practice will be presented for palliative care), laboratory tests and invasive Neuromodulation with spinal discussion. Teams and multi-disciplinary team procedures (least helpful in palliative care). The administrations and other potentially work will also be linked to the ideas presented. clinical examination relies on (1) symptoms useful invasive procedures for reported by the patients (spontaneous pains, difficult cases APRIL 10 SUNDAY such as dysesthesia, paresthesia; stimulus- Abstract number: 629 evoked pains, such as hyperalgesia, allodynia, Per Sjøgren, Pain Center, Copenhagen, Presentation type: Invited etc.), (2) the neurological findings (pattern of DENMARK Poster number: sensory disturbance, associated findings, bedside tests such as pinprick, thermal, Decades ago WHO outlined the use of a Managing the professional border: vibration, etc.), (3) quantitative sensory testing stepwise approach or ‘analgesic ladder’ in order relentless self-care (Frey hairs, vibrameter, weighted needles), (4) to manage cancer pain. The main tenet is to pain quality and intensity scales (VAS, Likert initiate treatment with less potent analgesics David Oliviere, Director of Education and NRS, VRS, MPQ, LANSS), (5) assessment of and to advance to more potent analgesics with Training, Sydenham, GREAT BRITAIN other dimensions (QoL, mood, sleep, anxiety, concomitant use of adjuvant drugs and invasive depression). Laboratory tests may encompass procedures as pain intensifies. Approximately 5 We create systems which invite families to share (1) standard electrophysiological studies, (2) to 15% of cancer patients will have inadequate their pain – who in these systems support those microneurography, (3) nociceptice reflexes, (4) control of pain with orally administered who absorb that pain? (Klagsbrum). This short laser-evoked potentials, and (5) functional medications mainly in advanced and terminal presentation will overview the forms of stress neuroimaging. A biopsy will most likely not add stages of the disease (1,2). Neuropathic pain experienced by palliative care professionals in to the treatment decision in palliative medicine. conditions constitute undoubtedly a significant doing their work in managing death and Neuropathic pain may be differentiated into part of these difficult cases as neuropathic pain bereavement and coping with uncertainty. It predominantly central in origin is frequently met in advanced cancer and is will also review key areas to consider in (deafferentiation pain, sympathetically associated with high pain intensity and poor planning effective staff support. The paper will mediated pain) and predominantly peripheral treatment outcome (3). Pain specialists should refer to a number of writers on staff support, (polyneuropathy or mononeuropathy). be cable of using alternative pain-relieving including Vachon, Papadatou and Monroe and Mononeuropathies may be divided into modalities and based on the clinical situation will refer to Renzenbrink’s work on ‘relentless lancinating neuralgias, activation of nociceptive select the adequate techniques. A difficult task is self-care’. The concept of resilient staff will be nervi nervorum, and aberrant activity in injured to identify patients, who will benefit from a floated and individual, multi-professional and

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institutional implications will be mentioned to professional team a vast range of different Abstract number: 633 be explored in subsequent papers. backgrounds and know-how has been merged. Presentation type: Invited Different stages of integration in the team have Poster number: been established with central members, liaison Abstract number: 630 and counselling from other services and The EU – clinical trial directive and Presentation type: Invited volunteers. Team forming procedures as well as research in palliative care: Research Poster number: the organisation of working procedures are in obstacle or facilitation? development. Finding a group identity and a Individual and Institutional stress collective strategy is of major importance for Ola Dale, Department of Anesthesiology, effective cooperation, especially in the forming Trondheim, Norway Tine De Vlieger, Universitaire Instelling phase. This is closely related to the ability of the Antwerpen team to get involved in emotional learning “Directive 2001/20/EC of the European procedures. On the other hand team forming Parliament and of the Council of 4 April 2001 Introduction: A good managed team is the key may build up pressure towards group on the approximation of the laws, regulations to deliver good work. Caregivers in palliative conformity with typical risks such as loss of and administrative provisions of the Member care are daily confront with all aspects of life profile of those team members with specific States relating to the implementation of good and death. Social skills help us to deal with expert knowledge or loss of tolerance for clinical practice in the conduct or clinical trials patients, their family and colleagues in care. diversity for example for different priorities in on medicinal products for human use” (EU- Managing a team in palliative care is create the therapeutically approach. This raises the clinical trial directive) was implemented May 1. forum for reflection about care ethics, support question about the decisive factors of a good 2004. It has created debate in many member the individual teammembers as a coach and palliative care team. Further on what kind of countries for several reasons such as increased offer educatian and training in communication, resources and supportive measures are needed bureaucracy, consequences for research ethics teamwork , selfcare and stressmanagement. to meet the challenges of multi-professional committees, and not least the issue of including Objectives: It is a challenge for management to work? The study represents results of a persons lacking capacity for giving informed create a teamspirit that lead to high quality of qualitative action-research oriented approach. consent. care, improvement of teamwork, recognation Methods of investigation were semi-structured Bureaucratic rigidity: The directive requires and reduction of stressfactors and personal interviews and participant observation as well as that clinical trials should be conducted growth. specific interventions such as consensus according to principles as “for instance reflected Methods: Give recognition and valuing to each workshops towards the common operational in the 1996 version of the Helsinki teammember and the team. Invite the aims of the team. First results of the Declaration”. Does this mean that later versions teammembers as an individual and group to organisational development are presented and of the Helsinki Declaration applies in all other reflect upon work-aims, teamwork, experiences with methods of staff support are biomedical research, but is not valid in clinical inconveniences in work and personal reported. trials? workneeds as guidance, motivation, education, Ethics committees: Required to consider stress. investigator’s brochure, suitability of Plan regulary workmeetings were care- Abstract number: 632 investigator and his staff, the quality of facilities experiences can be exchange and vision and Presentation type: Invited and economic arrangements between sponsor guidelines can be made or followed up. Invite Poster number: and investigator. In some countries this is a new minimal twice a year each teammember to burden, and one may ask if the committees participate at an employee evaluation with the Palliative care research: ethical issues have capacity for this expansion of duties. manager to recieve functional feedback. Oblige Positive is that a response is required within 60 participation to regular intervision. This Jane Seymour, School of Nursing and days, and that multi-center trials shall be method give utterance to care for the caregivers Midwifery, University of Sheffield, Sheffield, approved at one site in a country. as an important part of management and a GREAT BRITAIN Inclusion of incapacitated persons: Many method of support. Oblige to follow courses in subjects relevant to research in palliative care stressmanagement and selfawareness. This presentation will introduce the teaching may not be able to give an informed consent. Setting: Network for palliative Care Antwerp, session ‘Research – ethics’. In palliative care The directive gives detailed instructions for Flanders, Belgium research, ethical issues feature in two ways: first, inclusion of such persons. Foreseeable risk and Conclusion: Teamwork is an essential tool to in debates about the ethics of research conduct benefit must be assessed for each trial provide palliative care. The teammembers are in palliative care (ethics in research) and, individual .Also, a “legal representative”, a non the key in the organisation to reflect about the second, in attempts to acquire a better existing person/body in some countries, must quality of offered care, organisation – and understanding of ethical dilemmas and consent. One can ask if any body, not knowing workstructures. They are also important to perspectives involved in the delivery and receipt the individual patient at all, can protect person balance the effectiveness of the management. of palliative and end of life care (research on better than clinicians who care for their For the manager of the team it is a continual ethics). Ethics in research. In considering patients? challenge to be aware of the needs and ethical issues in palliative care research, one growingpains of a team. Learn the team and the area that has been neglected is that of the teammembers to achieve a deeper ethical issues involved in qualitative studies. Abstract number: 634 understanding in there stressfactors and With the development of research ethics review Presentation type: Invited management possibilities is an important task. mechanisms in Europe, formal attention is now Poster number: being directed at qualitative research in health care fields. However, many ethical problems How can Empirical Research be carried Abstract number: 631 and dilemmas in qualitative research are out in Clinical Ethics? The Embedded Presentation type: Invited unanticipated and involve issues of Researcher as a methodological Approach Poster number: collaboration, trust and the management of interpersonal relationships over which ethical Uwe Fahr, Medical Departement of the Teamwork as a central concept in review committees have no jurisdiction. These University of Basel, Basel, SWITZERLAND, Stella palliative medicine involve moral choices and dilemmas that Reiter-Theil, Insitut für Angewandte Ethik und require ongoing reflection and support to Medizinethik, Basel, SWITZERLAND Martina Pestinger, Universitätsklinikum resolve. Research on ethics With advances in Aachen, Aachen, GERMANY, Saskia Jünger, medical technology and changes in The concept of the embedded researcher has Klinik für Palliativmedizin, Aachen, GERMANY, demography and epidemiology, palliative care been developed by the research groups in Frank Elsner, Klinik für Palliativmedizin, faces a range of ethical challenges that require Freiburg and Basel [1]. It was stimulated by two Aachen, GERMANY, Lukas Radbruch, Klinik für both empirical study and ongoing critical questions. (1) How can we safeguard that Palliativmedizin, Aachen, GERMANY debate. At the end of life, these challenges are research in bioethics will yield valid and particularly visible. Questions about: how to meaningful results for practice? (2) How can we Teamwork is well accepted as a central manage the dying process, the best way to make convince clinical colleagues that medical ethics instrument for the comprehensive approach of clinical decisions, and how to relate to dying offers relevant contributions to the analysis and palliative care. Non-hierarchical structure, people and their companions; have been issues solution of ethical problems in clinical practice? competence in the own area of work, estimation of intense debate across Europe. This draws Firstly, this presentation will inform about the of the other team members and high esteem for attention to the way in which death is both a general features of the concept of the embedded the team work are characteristics of the socially organised and a physical transition. researcher as it has been applied in Geriatrics palliative care team. The Department of and Operative Intensive Care. It will be shown Palliative Medicine has been newly established how an embedded researcher gathers at the University Hospital of Aachen, an information about a selected case and how this inpatient unit is available since September information contributes to an integrative case 2003. With the formation of the multi- study. Secondly, we will discuss the approach of

138 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

the embedded researcher in the context of the Abstract number: 636 Abstract number: 638 widely discussed issue of ‘principlism versus Presentation type: Invited Presentation type: Invited casuistry’. The concept of the embedded Poster number: Poster number: researcher should be seen in the context of this methodological controversy as a bottom-up Measurement of subjective Response Shift in Studies Assessing approach trying to stimulate ethical discussions symptoms: depression Quality of Life: should we abandon oriented at the same time at the collection of all measurement? objective data. Thirdly, it will be shown how the Julia M Addington-Hall, School of Nursing and concept can be used for research in clinical Midwifery, Southampton, GREAT BRITAIN Irene J Higginson, Department of Palliative Care ethics. For this purpose a series of case studies in and Policy, London, GREAT BRITAIN a Geriatric Unit will be described. The ten cases Although some symptoms of depression may be vary in general features such as patient age, understandable in advanced disease, and there The results of evaluations of palliative care ethical problem and the course of treatment. are arguments to avoid medicalisation of services have been disappointing as far as We will point out how the concept of the distress, more severe forms of psychological quality of life (QoL) is concerned. Salisbury et embedded researcher is useful to gather thick distress are common, frequently overlooked, al’s systematic review of alternative models of information. To sum up, the concept of the and our understanding of their nature and specialist palliative care concluded that services embedded researcher is a strong instrument of course is limited. More research is needed. A key showed little or no effect on QoL(1), whereas research in clinical ethics. It can be used to decision is how to measure depression. A good other reviews found improvements for different scrutinise the clinical and ethical details of a measurement tool for depression in palliative outcomes(2). A cluster randomized controlled case very thoroughly, and it enables researchers care needs to be short and easy to understand; it trial found no difference between 235 palliative to discuss medical cases in a way that has been must take into account the fact that many of care patients with 199 controls, using the shown to be very useful to clinicians. [1] Reiter- the symptoms of depression may be caused by European Organization for Research and Theil S (2004) Does empirical research make the underlying cancer diagnosis; and it must Treatment of Cancer Quality of Life bioethics more relevant? ‘The embedded measure clinically significant depression rather Questionnaire-C30 (EORTC QLQ-C30) researcher’ as a methodological approach. In: than depressed mood (although it is difficult to questionnaire.(3) There are three possible Medicine, Health Care and Philosphy 7: 17–19, know where understandable distress related to interpretations of these studies Results: 2004. diagnosis ends, and where depression begins). palliative care services make no different to Popular tools, including Chochinov’s single- QoL, insensitive measure of QoL are used, or item ‘are you depressed?’ question, will be that in response to events, many individuals Abstract number: 635 reviewed in terms of their reliability, validity adapt to their circumstances and alter their Presentation type: Invited and feasibility in palliative care, and a way evaluation of self, wellbeing, goals and Poster number: forward discussed. expectations, thus changing the way they respond to assessments. These changes, often End of Life Ethics: Hindu, Muslim and called ‘response-shift’, may result in the Buddhist Perspectives Abstract number: 637 contradictory findings in many studies. Presentation type: Invited Response-shift can occur in three dimensions: Bert Broeckaert, Belgium Poster number: (a) re-calibration, (b) re-prioritization and (c) re- conceptualization (4). This session will define In ethical discussions on end of life issues, Measuring breathlessness response shift, discuss its components and ways whether in the scientific literature or in the to assess it. Using examples from recent political debate, usually only two voices are Claudia Bausewein, Klinikum der Universität palliative care studies we will consider the heared: those of people speaking from a secular, München – Großhadern, München, Germany extent of response shift, and how it may be non-religious perspective and those of people affecting research findings and clinical referring implicitly or explicitly to a christian Breathlessness is a common symptom in assessments. References 1. Salisbury C, framework. When in ethical end of life patients with cancer, chronic obstructive Bosanquet N, Wilkinson E.K., Franks PJ, Kite S., discussions the religious factor surfaces it is airways disease and chronic heart failure. As Lorentzon M. et al. Palliat Med 1999;13:3–17 2. nearly always wrapped in christian cloth. People breathlessness is subjective and often correlated Hearn J,.Higginson IJ. Palliat.Med. refer to the biblical thou shallt not kill, to the with other symptoms such as anxiety, 1998;12:317–32. 3. Jordhoy MS, Fayers P, Loge teaching of the church, the pope etc, agreeing depression or fatigue it is difficult to measure. JH, Ahlner-Elmqvist M, Kaasa S. J Clin Oncol or disagreeing with the positions taken. Various breathlessness or dyspnoea scales exist 2001;19:3884–94. 4. Schwartz CE, Merriman European societies however have changed for measuring breathlessness but there is no MP, Reed GW, Hammes BJ. J Palliat Med. 2004 dramatically over the last few decades. From gold standard against which the validity of an Apr;7(2):233–45. societies with an often exclusively christian instrument can be assessed. Breathlessness religious heritage they have evolved into scales can be divided in scales measuring multicultural and multireligious societies in multiple symptoms where breathlessness is Abstract number: 639 which for instance Islam, nearly totally absent included or dyspnoea specific questionnaires. Presentation type: Invited before, has become the second largest religion, Global scales include the Edmonton Symptom Poster number: involving millions of Europeans. This fact Assessment System (ESAS), the Support Team cannot be ignored by bioethicists and most Assessment Schedule (STAS), the Rotterdam Outcomes in prospective clinical studies – certainly not by people involved in palliative Symptom Checklist (RSCL) or the Memorial how to choose? care. Symptom Assessment Scale (MSAS). Dyspnoea If palliative care claims to put the patient at specific questionnaires include the Modified Stein Kaasa, Department of Cancer Research the centre, it cannot disregard the cultural and Borg Scale, the Baseline and Transitional and Molecular Medicine, Trondheim, Norway APRIL 10 SUNDAY religious sensitivities of a buddhist (or hindu, or Dyspnoea Index (BDI and TDI), the Medical …) patient when difficult ethical decisions have Research Council dyspnoea scale (MRC), the In clinical studies in palliative care most studies to be taken. In this paper an overview is given of Shuttle Walking Test or the Oxygen–Cost will aim at symptom improvement and/or how islam, hinduism and buddhism look at diagram. The scale that will be chosen depends improvement of quality of life, meaning that ethical issues at the end of life. Is sedation on the objective of measurement, e.g. research the outcomes in most cases are of subjective allowed in buddhism? What about euthanasia or outcome of an intervention. For patients nature. In general, during the planning process in islam? Can life-sustaining treatment be with respiratory disease relatively little research of a study one need to clearly define the withdrawn in a hindu patient? While discussing is done on the overall quality of life. Most primary and secondary outcomes based upon the attitudes and positions of the religious outcome measures have focused on survival or the research questions. A regirous sample sized traditions involved regarding end of life pathophysiologic measures. However they estimation should be based upon the primary decisions, the richness and complexity of each correlate poorly with general quality of life outcome. tradition is taken very seriously. measures. Furthermore it has been shown that There are many considerations to take before dyspnoea measures are not strongly correlated the use of instrument is decided upon. First, with objective measures of pulmonary one must decide which domain/area are of function. most importance, thereafter one may consider also the need for secondary or tertiarly outcomes. However, it is important to underline that outcomes must be based upon the clinical research questions in mind. A valid and international accepted instrument are to be recommended in most cases. The number of questions given to the patients must be weighted against the burden to each individual by completing the instrument.

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It is experienced in many studies that too many Abstract number: 641 quality of their palliative care education (2) GP questions may reduce the compliance. Presentation type: Oral registrars’ perception of their confidence and A special challenge in palliative care is to Poster number: skill in caring for patients with palliative care collect data from patients with reduced needs. Method: Questionnaires were sent to all cognitive function. There is no international Comparison of patients’ and physicians’ GP Registrars in six UK deaneries (London, consensus for example on how to measure pain assessment of the health related quality of Eastern, Wales, West Midlands, Northern in the cognitively impaired. It is most often life of palliative care patients Ireland and North East Scotland) via their recommended to use proxy evaluators, however, administrative staff. Responses were monitored how these data correlates with data from Morten Aa. Petersen, Department of Palliative and the non-responders were followed up twice. patients is still questionable. Therefore, it is a Medicine, Copenhagen, DENMARK, Henrik Results: 320 out of 498 GP Registrars completed main research area to establish how to collect Larsen, Department of Palliative Medicine, the questionnaire, giving a response rate of data from the cognitively impaired patient. Copenhagen, DENMARK, Lise Pedersen, 65%. Most respondents were female (195/320) Without outcomes it is difficult to perform Department of Palliative Medicine, with a median age of 32 years (IQR: 28 to 35). research during end of life care. Copenhagen, DENMARK, Nan Sonne, Over half of GP Registrars felt that Department of Palliative Medicine, communication skills, pain control and control Copenhagen, DENMARK, Mogens Groenvold, of other symptoms was satisfactorily covered, Abstract number: 640 Department of Palliative Medicine, and felt confident in these areas. Fewer felt that Presentation type: Oral Copenhagen, DENMARK syringe driver use (38%) and bereavement care Poster number: (36%) was satisfactorily covered. One third Objective: Research in palliative care is expressed low confidence in the area of Consent Issues Recruiting Dying complicated by the poor condition of the bereavement care, and over half expressed low to Randomisation Studies in patients. Hence, if equivalent information confidence in using a syringe driver with a Palliative Care could be obtained from other sources than the palliative care patient. Sixty percent had not patients this would often be preferable; this used a syringe driver with a patient over the last Andrew Fowell, Palliative Care Dept, may improve the compliance, the applicability 12 months. Conclusions: The finding that over Caernarfon, GREAT BRITAIN, Ros Johnstone, of results, and the range of studies ethically half of all GP Registrars surveyed did not feel North West Wales NHS Trust, Caernarfon, feasible. Few proxy studies have been carried confident in using a syringe driver nor had GREAT BRITAIN, Ian Russell, University of out in specialised palliative care units. practical experience in this area suggests further Wales Bangor, Bangor, GREENLAND, Ilora Therefore, we investigated whether physician training in this area would be beneficial. There Finlay, University of Wales College of Medicine, assessments could be used to evaluate the also appeared to be a call for further training in Cardiff, GREAT BRITAIN, Daphne Russell, health related quality of life of palliative care bereavement care. University of Wales Bangor, Bangor, GREAT patients. Study Design and Setting: Patient and BRITAIN physician assessments of EORTC QLQ-C30 items and scales were obtained once a week for Abstract number: 643 Guidelines in palliative care exist, but evidence up to 13 weeks in consecutive patients admitted Presentation type: Oral underpinning these is weak. There are known to a department of palliative medicine. Several Poster number: difficulties surrounding recruitment of methods for comparing responses were used to palliative care patients to trials/research studies. investigate the agreement at first contact T0 Palliative care services are associated with Dying patients have significantly less energy, (N=115) and for the following time-points T1- improved caregiver outcomes are easily fatigued or exhausted at the slightest T13 combined (total N=263). Results: At T0 exertio, accomanying physical problems may be average differences between patient and Amy Abernethy, Division of Medical pain, dyspnoea, excess respiratory secretions or physician scores ranged from 7 to 18 (0–100 Oncology/Department of Medicine, Durham, vomiting. Approaching dying patients to scale), exact agreements ranged 21–62%, and North Carolina, U. STATES, Belinda Fazekas, participate in research is not always defendable kappa coefficients were 0.26–0.70. The best Southern Adelaide Palliative Services, Adelaide, though vulnerable, dying patients remain agreements were observed for nausea/vomiting AUSTRALIA, Maggie Kuchibhatla, Duke valuable to research. A feasibility study and constipation symptoms and the poorest for University Medical Centre, Durham, U. STATES, (ISRCTN60243484) exploring two types of social functioning. The analyses for T1–T13 David Currow, Southern Adelaide Palliative randomisation, cluster and randomised consent generally confirmed the findings for T0 with a Services, Adelaide, AUSTRALIA (Zelen) were utilised following a crossover tendency to slightly poorer agreement. design at two hospitals within the North West Conclusion: The agreement between patients Background: Outcomes of palliative care Wales NHS Trust. All patients admitted to the and physicians was poor across most domains services (PCS) should not be limited to the two sites and being cared for on the Integrated and for most levels of symptoms. Using impact on people with the life-limiting illness Care Pathway (ICP) for the last days of life were physician assessments might bias findings and (LLI). The health impact of caregiving is well approached for consent to access medical cannot be recommended as a substitute for the recognized; maintaining health of caregivers records by a healthcare professional assuring patients’ own assessments in palliative care. during and after the palliative care phase has to anonymity. Each site was allocated to one be a focus of end-of-life services. Methods: method for 3 months and then crossed over to Piloted questions were included in the the other method for 3 months. A pro-forma Abstract number: 642 2001–2003 annual face-to-face health surveys of was developed for consent to access medical Presentation type: Oral 9,053 South Australian (SA) residents on the records this maintained consistency across the Poster number: need for, uptake rate of, and impact of palliative sites. Initial resistance by staff to utilise the pro- care services. The survey was representative of forma on admission was resolved by informing A UK Wide Survey of GP Registrars’ the SA population by age, gender and region of staff about the study resulting in improved Palliative Care Education residence. Analyses concentrated on patient consent. Sites using ‘Zelen’ had a total respondents who reported that they cared for a of 29 deaths over 6 months, 11 of these were Joseph Low, Marie Curie Palliative Care terminally ill person. Results: Of the ICP patients, 9 of of the 11 gave consent. Sites Research & Development, London, GREAT population, 37% (3,341) indicated that using cluster randomisation had 25 patients BRITAIN, Michele Cloherty, Marie Curie R & D someone close to them had died of a LLI in the dying over 6 months, 11 of these were ICP Unit, Royal Free and University College London, preceding 5 years. Overall, 949 (29%) reported patients, consent was recorded for 8 patients. London, GREAT BRITAIN, Dr Stephen Barclay, that they provided some level of hands on care Failure to acquire consent was attributed to the University of Cambridge, Dept of Public Health for the deceased individual, with 329 (10%) poor condition of the patients and patients that and Primary Care – Institute of Public Health, providing day to day hands on care, 367 (11%) rapidly deteriorated following admission to the Cambridge, GREAT BRITAIN, Dr Arthur Hibble, intermittent care, and 253 (8%) rare care. ward. Patients entering the last days of life are Eastern Deanery – Postgraduate General Practice Caregivers were more likely to be first degree able to participate in clinical trials, outcomes of Education, Cambridge, GREAT BRITAIN, Dr relatives and female, and 46% provided care for which will improve the evidence base and Susie Wilkinson, Marie Curie R & D Unit, Royal more than one year. Fifty-six percent reported expand the boundaries for healthcare Free and University College London, London, PCS involvement in care. Comparing the professionals caring for dying patients. GREAT BRITAIN experiences of caregivers when patients did or did not receive PCS, more carers who had PCS Background: In the UK, there is recognition of indicated that they could ‘move on’ with their the central role that General Practitioners (GPs) lives (93% vs. 87%, p<0.005). (From pilot data, play in providing care to patients in the last year moving on incorporated stopping dwelling on of their life. There is some concern about GPs’ the past, life returned to normal, accepting ability to provide this care. To see how these death as part of life, looking to the future, past gaps in palliative care knowledge develop, it is crying and realizing that grieving ends.) This important to evaluate the level of training effect was strongest in the first 12 months. received by GP Registrars. Aim: to evaluate: (1) Hands-on caregiver benefit was even greater at 6 GP registrars’ perceptions of the coverage and months (82% vs. 67%, p=0.004). Conclusions:

140 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

One tenth of the population has cared for a both. If the goal of PCT would be clear, this provided consent and 461 (92%) of their GPs person who died of a LLI in the past 5 years. would have important clinical consequences, as consented; 461 were fully enrolled in the study. More than half of all caregivers accessed one could better indicate and evaluate cancer In total, 31% of the screened population was palliative care services, and those who did care. By studying trend-setting phase III eligible and 76% of the eligible population was benefited with a significantly higher rate of research of PCT, we tried to settle the randomised. To date, the mean and median ‘moving on’ with their lives. discussion. Methods: To see what authors length of stay in the study is 107 and 65 days, consider to be the primary goal of PCT, 29 respectively; data collection continues until 30 phase III trials of PCT in colorectal cancer were November 2004. Conclusion: Recruitment of Abstract number: 644 selected for a review. From every single article participants for longitudinal research in Presentation type: Oral that presented a trial, the results on the palliative care is possible. Poster number: different endpoints were compared to the advices given by the authors in the discussion Training Needs of Canadian Palliative section. Results: We found that trials, in their Abstract number: 647 Care Researchers: A National Survey study design and results, were focussed on both Presentation type: Oral life prolonging and QoL-outcomes. However, Poster number: Jose Luis Pereira, Palliative Medicine, Calgary, authors clearly gave more (often positive) CANADA, Kim Fisher, Palliative Care Research advices on basis of life prolonging results – even PAIN CONTROL WITH Initiative, Calgary, CANADA, Vicki Baracos, if the results of the experimental arm were TRANSDERMAL BUPRENORPHINE University of Alberta, Edmonton, CANADA, Lisa equal to the control arm – than they would on van Wijk, Alberta Palliative Care Research basis of QoL Results. Conclusion/Discussion: In Antonio Montero, Pain Unit, Salamanca, SPAIN, Initiative, Calgary, CANADA, Monica Faria, our review we can hardly find a reason to Clemente Muriel, Pain Unit, Salamanca, SPAIN, Alberta Palliative Care Research Initiative, choose a specific PCT for QoL improvement, Marta Neira, Grünenthal Spain Medical Calgary, CANADA because the advices based on phase III trials are Department, Madrid, SPAIN, Jose Manuel mainly focussed on life prolonging Results. To Cervera, Hospital Elda. Oncological Unit, Elda, Background: Capacity to conduct palliative care disentangle the discussion, we need to SPAIN, Carlos Bueso, Hospital Elche,. Palliative research (PCR) needs to be enhanced. Methods: recognize the two meanings of the word Care Unit, Elche, SPAIN A national online survey was conducted to ‘palliative’, namely in palliative care (which identify Canadian health professionals involved only focuses on QoL) and palliative Objectives:1. To evaluate the tolerability and in or interested in participating in PCR. Results: chemotherapy (which just is in contrast with safety of transdermal buprenorphine 2. To 153 respondents were either active in PCR (64) curative treatments). Probably it would be better evaluate the effectiveness, (degree of pain relief) or considering becoming involved (89). Of to use the term PCT only in the few cases when 3. To collect information on its patterns of use these, 60 (46%) had no formal training in the goal of the chemotherapy is QoL. Otherwise in clinical practice 4. To evaluate the effects of research; 35 (23%) had a Masters degree and 5% we suggest that the term ‘life prolonging treatment on the patients’ quality of life. had PhD degrees. 86/153 (56%) considered chemotherapy’, according to its intention, Methods:The study was designed as a their training inadequate. Low comfort levels would be clearer. prospective, non-interventional 3-month were reported in (% of respondents indicating follow-up study. 58 Palliative Care and low comfort levels; n=148): critiquing research Oncological Units participated and 207 papers (62%); designing studies (74%); selecting Abstract number: 646 oncological patients were included. Pain relief appropriate measurement tools (75%) and Presentation type: Oral was determined by means of a five-category statistical methods (79%); and conducting Poster number: Verbal Rating Scale and quality of life by the qualitative research (74%). High levels of EuroQol 5D questionnaire. For safety interest for further training were reported in (% Recruitment of 461 patients into a measurement all adverse events were codified of respondents; n=150): critiquing research longitudinal randomised controlled trial by MedDRA 6.1 and a statistical analysis was papers (35%); designing studies (42%); selecting in the palliative care setting. How can it performed. Results: 61.65% patients were male appropriate measurement tools (42%) and be done? and 38.35% female with an average age of 65.72 statistical methods (34%); writing research (TD 12.73). At baseline 89.27% of patients were proposals (43%); managing research projects Amy Abernethy, Division of Medical prescribed 35 µg/h transdermal buprenorphine (36%); and conducting qualitative research Oncology/Department of Medicine, Durham, and the proportion of patients using higher (44%). 26%–36% of respondents (n=140) North Carolina, U. STATES, Tania Shelby-James, doses (52.5 or 70 µg/h) increased during the expressed high interest levels in attending short Southern Adelaide Palliative Services, Adelaide, first follow-up month (31.55 %) and until the courses (1–2 weeks) on research methods & AUSTRALIA, Christine Lillie, Southern Adelaide end of the study (48,08 %, p<0.001). Regarding designs, statistics, qualitative research and PCR Palliative Services, Adelaide, AUSTRALIA, David the Pain Relief Scale, 4.86% of patients management. 21% expressed interest in Currow, Southern Adelaide Palliative Services, experienced good or very good pain relief at the certificate/diploma level courses with distance Adelaide, AUSTRALIA baseline evaluation. This percentage improved learning components (21%) and 14% expressed to 89.19% in the third month of evaluation. interest in Masters degrees. Lack of research Background: Authors argue that large The mean score for the EUROQOL scale training, mentors, time and funds to hire randomised controlled trials (RCTs) in palliative throughout the study rose from 44.83 ± 16.99 to trained staff was perceived as significant care are not possible due to the limitations of 66.01± 18.42. 36.71 % of patients experienced barriers. Conclusions: Lack of training in participant recruitment. The Palliative Care adverse events, but only 14.49% had related conducting and participating in PCR is a major Trial (PCT) is a RCT of educational outreach adverse events. The prevalence of constipation, barrier to improving PCR in Canada. There visiting and case conferencing for patients in vomiting and nausea was 8.7%, 3.86% and exists a high level of interest in receiving further palliative care aiming to recruit at least 460 3.38% respectively. Local adverse events were training. patients. Setting and Participants: A community prurituis (1.45%) and dermatitis (0.97%). APRIL 10 SUNDAY based palliative care service in South Australia Conclusions:1.Transdermal buprenorphine is with >1,100 referrals yearly. To be eligible, an effective drug for chronic, moderate to severe Abstract number: 645 participants had to be 18 years or older, have a oncological pain 2. Excellent safety and Presentation type: Oral history of pain, be able to provide informed tolerability profile 3. Almost half of patients Poster number: consent or had a carer/legal proxy available, and used higher doses after 3 months of treatment have a consenting general practitioner (GP). 4. Transdermal buprenorphine improves quality Changing goals, disentangling Methods: Recruitment strategies included: · A of life in oncological patients. the treatment goals of full-time recruitment nurse with Palliative Chemotherapy communications and consent ethics training sensitive to the special needs and risks of Susanne de Kort, General Practice, Amsterdam, burden for palliative patients; · A triage process NETHERLANDS, Prof. dr. Dick Willems, for all new referrals ensuring all eligible patients Academic Medical Center, University of were screened; · Scripting and role-play; · A Amsterdam, Amsterdam, NETHERLANDS, Prof. consent process that sought consent from the dr. Dick Richel, Academic Medical Center, patient prior to consent from the patient’s GP; · University of Amsterdam, Amsterdam, Ongoing discussions with local stakeholders NETHERLANDS and clinical staff to reduce gate keeping; · Monitoring of recruitment related Key Background: The objective of this study is to Performance Indicators; · Print and electronic clarify what is and what should be the main marketing; and, · Intermittent staff social events goal of palliative chemotherapy (PCT). to maintain interest in the study and its Oncologists disagree whether PCT is intended outcomes. Results: From April 2002 to June to improve Quality of Life (QoL) or to prolong 2004, 614 patients were screened, 607 were life/tumour response or, like some people say, eligible for participation, 500 (82%) patients

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Abstract number: 648 PK over 6 hours. A total of 135 patients were Abstract number: 651 Presentation type: Oral evaluated for their steady-state dose-normalized Presentation type: Oral Poster number: PK metrics, AUC and Cmin. For age, (young: Poster number: 32–64 y [n=89], elderly: 65–75y [n=31], very Efficacy and safety of Buprenorphine elderly: >75y [n=15]); AUC and Cmin increased The Use of Methadone in Delirium at the (BPN) patches in far-advanced cancer approx. 31% and 22%, for elderly versus young, End of Life patients: preliminary results and approx. 52% and 63%, respectively, for the very elderly versus young; there was significant Natalie Moryl, Neurology, New York, U. STATES, Gala Serrano-Bermudez, Palliative Care Service, overlap among and variability within the Maria Kogan, Calvary Hospital, New York, U. L’Hospialet-BCN, SPAIN, Josep Porta-Sales, groups. Comparing gender (64 males vs 71 STATES, Eugenie Obbens, Memorial Sloan- Institut Catala d’Oncologia, L’Hospialet-BCN, females) resulted in AUC and Cmin values 20% Kettering Cancer Center, New York, U. STATES SPAIN, Albert Tuca-Rodriguez, Institut Catala to 21% higher for females. There was no d’Oncologia, L’Hospitalet-BCN, SPAIN, Eulalia correlation between body weight and dose- Concerns about safety of methadone have led Alburquerque-Medina, Institut Catala adjusted exposure or dosage of HHER. There to its limited use, especially in frail patients. d’Oncologia, L’Hospialet-BCN, SPAIN, Xavier were no apparent differences in PK observed This prospective study documents the use of Gómez-Batiste, Institut Catala d’Oncologia, based on race/ethnicity (white, black, Hispanic), methadone in patients with terminal delirium L’Hospialet-BCN, SPAIN although the small percentage, 12.5%, of and pain admitted for terminal care to the nonwhites precluded statistical comparisons. PK tertiary cancer palliative care hospital. Treating AIM: To evaluate the analgesic efficacy and parameters increased with decreasing renal terminal delirium physicians commonly have safety of BPN patches in patients with far- function-creatinine clearance (Clcr >80 mL/min to choose between a consecutive cycle of opioid advanced cancer. METHODS: We enrol a = normal [n=54], 50–80 = mild [n=61], 30–49 = rotations (80% of patients require 1 switch, 44% consecutive sample of ambulatory patients with moderate [n=15], <30 = severe [n=5]): 41% in require 2 switches, and 20% require 3 or more a pain score (VAS: 0–10) greater than 4, and AUC and 33% in Cmin from normal to mild switches) and sedation. Methods: 20 already been treated with weak analgesics. We impairment, with increases up to 64% and 78%, consecutive patients with uncontrolled pain always started with BPN half patch of 35 mcg. respectively, in patients with severe and terminal delirium that failed to improve 24 Patients were randomised to rescue with impairment. Based on these data, dose hours after starting neuroleptics were rotated to morphine 10 mg p.o. or tramadol 50 mg p.o. in adjustment of HHER in patients does not appear methadone. Results: The patients were 47 to 76 case of episodic pain. Basal pain and episodic to be necessary for differences in age, gender, years old, receiving opioids for severe cancer pain scores were evaluated, as well as the lasting body weight, race or normal renal function. pain. Ten patients were rotated from morphine, time before the increase the patch dose was 5 patients from Fentanyl, 2 from needed. Side effects were also recorded. hydromorphone, and 3 from a combination of RESULTS: From 26.04.2004 to 29.07.2004, 13 Abstract number: 650 fentanyl, morphine and hydromorphone. Of patients have been enrolled and 10 were Presentation type: Oral the 20 patients with terminal delirium the pain assessable. The mean age was 66.3 years , and Poster number: control improved significantly in 15, 8(80%) were men. The main neoplasm were: moderately in 3 patients. Median NAS decreased 30% lung, 20% bladder, and 20% pancreas. Opioids: Influence of titration rate and from 8.2 to 2.5. Sedation decreased from 1.65 to Before starting BPN, 5 (50%) patients were on daily dosage on concomitant symptoms in 0.55 on a 0–3 scale. Of the 20 patients tramadol, and 5 (50%) were on codeine . As cancer patients – a retrospective analysis improvement of cognitive status was significant rescue drug 5 (50%) patients used morphine, in 9, moderate in 6, partial in 2, and negative in and the remaining tramadol. Main basal pain Christoph Ostgathe, Palliative Medicine, Bonn, 3. Memorial Delirium Assessment Scale scores before BPN were 6 , and at 3 , 7 and 15 day GERMANY, Nauck Friedemann, Zentrum fuer improved from the average of 23.6 to 10.6. afterwards were 4.3, 3.1 and 3.4 respectively. Palliativmedizin, Bonn, GERMANY, Wagner Conclusions: Methadone can be effective in the Mean BPN dose at 3, 7, 15 days were 17.5, 31.4 Felix, Zentrum fuer Palliativmedizin, Bonn, treatment of both refractory pain and what and 36.6 mcg/h respectively . The mean time GERMANY, Klaschik Eberhard, Zentrum fuer appears to be terminal delirium. Most patients before the increase the patch dose was 4.8 days. Palliativmedizin, Bonn, GERMANY in our group had significant and sustained The mean pain score of episodic pain before improvement in analgesia and at least a short BPN were 7.5, and at 3, 7 and 15 day were 5.5, Introduction: In the management of cancer term improvement in mental status. 4.1 and 4.6 respectively. Mean number of pain opioids are considered save and effective. Consecutive sedation was devoid of agitated rescues per day before BPN were 3.7, and at 3, 7 Although save many patients suffer from side delirium. and 15 day were: 2.3, 1.7 and 2.1 respectively. effects during treatment. This study focuses on Significant side effects, were only seen in 2 dose titration respectively dosage of opioids and patients, 1 had a delirium (reversed) and the the incidence of concomitant symptoms. Abstract number: 652 other dermatitis (grade IV), in both BPN was Methods: In a database medication, dosage and Presentation type: Oral withdraw. CONCLUSIONS: In our patients symptoms of all patients treated on a palliative Poster number: Buprenorphine patches produce a good and care unit are documented. All patients receiving long lasting analgesia, with few side effects. opioids from 02/1994 and 03/2004 were filtered Bioavailability Comparison of a Once-A- Rescue pain crisis with morphine or tramadol from the database. Opioid dosage was converted Day Hydromorphone HCl Extended- offers similar efficacy and not more side effects. into daily morphine equivalent doses (DMED) Release (HHER) Capsule Swallowed Whole for the days 1, 2, 3, 4, 7, day before and day of Vs. Sprinkling Capsule Contents On Soft discharge/death (stay ≥9 d.). Titration rates were Palatable Food Abstract number: 649 calculated in relation to the previous day. Presentation type: Oral Statistical analysis was performed (ANOVA) to V Vashi, Department of Clinical Pharmacology, Poster number: test for variance in titration rates respectively Stamford, U. STATES, S Harris, Purdue Pharma DMED for patients with documented LP, Stamford, U. STATES, A Cipriano, Purdue EFFECTS OF AGE, GENDER, BODY WEIGHT, concomitant symptoms. Results: From 1543 Pharma LP, Stamford, U. STATES, D Cilla, RACE AND RENAL FUNCTION ON THE admissions 625 patients met the inclusion Purdue Pharma LP, Stamford, U. STATES, J PHARMACOKINETICS (PK) OF criteria (stay ≥ 9 d., opioid therapy). Miotto, Purdue Pharma LP, Stamford, U. STATES HYDROMORPHONE HCl EXTENDED- Constipation was more frequent (p<0,001) in RELEASE (HHER) q24h CAPSULES IN patients with high titration rates, but no dose Oral administration of opioid analgesics in the PATIENTS WITH PERSISTENT PAIN dependency was detectable. Myoclonus was treatment of cancer pain is a preferred route. In associated (p=0,012) with higher opioid doses patients with difficulty swallowing solid dosage V Vashi, Department of Clinical Pharmacology, (DMED), but not with the titration rate. In forms, q24h HHER (Palladone XL in UK & Stamford, U. STATES, S Harris, Purdue Pharma patients suffering from weakness (p=0,001) Hydal UNO Retard in Austria) capsules offer an LP, Stamford, U. STATES, A Cipriano, Purdue DMED and from restlessness titration rate alternate option, the capsule can be opened and Pharma LP, Stamford, U. STATES, A El-Tahtawy, (p=0,016) was significantly lower. No differences contents sprinkled on soft palatable food for Purdue Pharma LP, Stamford, U. STATES, D Wu, in DMED or titration rate were detected in easier swallowing. A single dose, crossover Purdue Pharma LP, Stamford, U. STATES patients suffering from nausea, vomiting, bioavailability study of 24 mg HHER capsule anorexia, dyspnoea or delirium. Conclusion: dosed whole was compared to a 24 mg capsule To compare the PK of a once-daily HHER Opioid titration is a common strategy to dosed by sprinkling the contents on a (Palladone XL in UK; Hydal Uno Retard in determine the effective dosage in cancer tablespoon of applesauce just prior to ingestion Austria) capsules in patients with stable patients with pain. This retrospective analysis in a study involving 26 male and female moderate to severe pain, mainly associated with indicates that the development of concomitant subjects. Following each dose, pharmacokinetic cancer, for differences based on age, gender, symptoms respectively side effects in patients blood samples were taken serially over a 72- body weight, race and renal function. Patients treated with opioids can be either dose hour period and analyzed for plasma were administered HHER capsules to a stable depended or depending on the pace of titration. hydromorphone by a GC/MS assay method. daily dose of 12 mg to 84 mg. After their final This assumed connectivity should be content of Twenty-four subjects completed the study and HHER dose, patients provided blood samples for further prospective studies. were in the pharmacokinetic analyses. The

142 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

mean areas under the concentration-time curve University Hospital, Oslo, NORWAY, Stein survival was predicted with PPV of 92% and (AUC) for HHER sprinkled on applesauce and Kaasa, Norwegian University of Science and NPV of 63% (sensitivity 68%, specificity 91%). HHER swallowed whole were 58.4 and 55.6 Technology, Trondheim, NORWAY, Laila Conclusions: The PPI is highly specific and may ng*hr/mL, respectively, with an AUC ratio Skogstad, Ulleval University Hospital, Oslo, facilitate redirection of the focus of care of 105.0%, 90% confidence interval (CI):102.6 to NORWAY patients identified as having a short prognosis. 108.6%. The mean maximum plasma Our study demonstrates that its applicability hydromorphone concentration (Cmax) for Background. Delirium is common in palliative extends to patients receiving chemotherapy and HHER sprinkled was 1.41 ng/mL compared to care, but poorly recognized and therefore /or radiotherapy and those referred to palliative 1.36 ng/mL for HHER swallowed whole, Cmax under-treated. The Mini-Mental State care services with non-malignant conditions. ratio 103.7%; 90%CI: 98.1 to 111.5%. HHER was Examination (MMSE) is commonly used for The PPI is a tool that is quick and easy to use generally well tolerated and most adverse events assessment of cognitive impairment (CI), (case: and does not require specialist knowledge to were those associated with opioid use. Based on <23 of 30) and delirium, and has become a ensure accuracy. AUC and Cmax, HHER dosed by sprinkling reference instrument. Besides being capsule contents on applesauce prior to cumbersome for daily clinical practice, little is ingestion is equally bioavailable to HHER known about its validity in advanced cancer. Abstract number: 656 capsules swallowed whole. Administration of The study objectives were to investigate the Presentation type: Oral HHER capsules not only provides patient and performance of the MMSE items for predicting Poster number: caregiver convenience, but offers the option of delirium in delirious patients and to explore sprinkling capsule contents on applesauce for whether a shortened version would have Use and cost-efficiency of palliative care easier swallowing by debilitated cancer patients. suitable properties for screening in palliative services in Spain: A national wide care patients. Methods. 507 complete MMSE multicenter prospective study scores were available from two data sets. Sample Abstract number: 653 A included 290 general medical patients Xavier Gómez-Batiste, Palliative Care Service, Presentation type: Oral (median age 80 yrs), of whom 142 had delirium L’Hospialet-BCN, SPAIN, Albert Tuca-Rodriguez, Poster number: (ICD-10) and 148 were matched controls (score Institut Catala d’Oncologia, L’Hospialet-BCN, > 24 on the MMSE). Sample B included 217 SPAIN, Esther Corralez-Baz, Institut Catala Transdermal buprenorphine in the palliative patients (median age 62 yrs). Stepwise dOncologia, L’Hospitalet-BCN, SPAIN, Josep treatment of cancer related pain logistic regression was used for identification of Porta-Sales, Institut Catala d’Oncologia, the best discriminatory items for delirium, L’Hospialet-BCN, SPAIN, Maria Amor, Institut Bart Van den Eynden, Chair of Palliative while linear regression was used for prediction Catala d’Oncologia, L’Hospialet-BCN, SPAIN Medecine,University Antwerp, Mortsel, of the overall MMSE score. Results. Most MMSE BELGIUM, Paul Van Royen, University Antwerp, items were too easy for screening purposes. Four AIM:Describe the use and cost of health care Centre for General Medicine, Antwerp, items were predictive (92% sensitivity) of resources for advanced-terminal cancer patients BELGIUM delirium in sample A: ‘current year’, ‘date’, attended by specialist Palliative Care Services ‘backward spelling’, ‘copy a design’. These items (PCS) in Spain and to compare them with a AIM OF INVESTIGATION: To collect data on the correctly identified 99% MMSE-cases (<23) in population-based previous study, in order to use of transdermal buprenorphine sample A and 96% in sample B. Adding two look at their efficiency. METHODS: Descriptive, (TRANSTEC®) in daily practice. METHODS: This items: ‘recall 3 objects’ and repetition of a prospective, multicenter study. Patients’ is a subset interim-analysis on the data from proverb reduced the standard errors. recruitment was done consecutively during 15 2.300 patients treated with TRANSTEC® of Conclusions. The MMSE appears to function successive days, with a follow up of 16 wks. A which 296 patients were suffering from cancer similarly in palliative and delirious patients. weekly questionnaire was used. Results were related pain. In this non-interventional trial, Caseness could be fairly accurately screened for compared with an historical study (1992), when data were collected at the start of treatment, by using four of the original 20 MMSE items, PCS were initially implemented. RESULTS: 101 after 2 weeks (optional) and 6 weeks of follow- while using six-items greatly improved the PCS participated, 52.6% home care teams. up. More than 700 physicians participated from discrimination. Participant teams were based in 14 out of 18 December 2002 until December 2003. Primary regions of Spain which is a representative efficacy variable was pain intensity measured sample. 395 cancer patients were recruited. on an 11-point numeric rating scale. Secondary Abstract number: 655 Median survival after recruitment was 6 wks efficacy variables were: patient satisfaction with Presentation type: Oral with a 2.1 health care pain relief, tolerability, user-friendliness and Poster number: interventions(HCI)/patient/ week. The most comfort of the patch measured on a verbal frequent HCI were home care visit, hospital rating scale. RESULTS: In the subset of 296 Prospective validation of the admission and phone call. The majority of the cancer patients the mean age was 70 years Palliative Prognostic Index in palliative hospital admissions were scheduled. PCS (17–98); 52% of the patients were males. care patients provided 67% of all services and intervened as Previous treatments mainly consisted of consultant services for 91% of patients. tramadol (28%), NSAIDs (8%), paracetamol Carol Stone, Palliative Medicine, Cork, Compared with historical data, there was a large (20%) and paracetamol/codeine (15%). Pain IRELAND, Eoin Tiernan, St. Vincents University shift from the use of conventional hospital beds intensity decreased from 7 at baseline to 3 after Hospital, Dublin, IRELAND towards palliative care beds, a lower length of 6 weeks (p<0.0001). Doses of TRANSTEC® used stay, 25.5 to 19.9 days (p=0.002), a decrease of at baseline were 75% for 35µg/h, 19% for Object: The Palliative Prognostic Index (PPI) hospital admissions 72% to 57.8% (p<0.0001), 52,5µg/h, 5% for 70µg/h. After 6 weeks dose was developed in patients with advanced an increase of death at home, 31% to 42% (NS), distribution was 35%, 38% and 19% respectively malignant disease in Japan. It relies on and a lower use of hospital casualty rooms, 52% ( 7% were other doses or missing data). 92% of assessment of performance status and clinical to 30.6% (p<0.0001), along with the use of APRIL 10 SUNDAY patients reported ‘Better’ to ‘Much Better’ pain symptoms and does not incorporate or require a services under programmed rather than relief after 6 weeks of treatment, 92% clinical prediction of survival or laboratory emergency manner. The cost of all hospital experienced a ‘Good’ to ‘Very Good’ tolerability investigations. The PPI categorises into one of 3 stays per patient was 1,795 euros. The and 92% of patients was ‘Satisfied’ to ‘Very groups, predicting survival of shorter than 3 preliminary analysis and comparison with the Satisfied’ with the user-friendliness and comfort weeks, shorter than 6 weeks, or greater than 6 previous use and cost of hospital beds per of the patch. CONCLUSIONS: 9 out of 10 cancer weeks. We set out to validate the PPI in a wider process can estimate a savings of 3,286 euros patients had at least good results for pain relief, patient population, including cancer patients per patient/process. CONCLUSIONS: PCS have tolerability and user-friendliness and comfort of receiving chemotherapy or radiotherapy and been promoted a radical change in the use of the patch. TRANSTEC® is an effective and well those terminally ill due to non-malignant health care resources at the end of life, with a tolerated treatment for cancer related pain. conditions. Methods: 223 patients referred to a reasonable cost per process, and have been palliative medicine consultancy service based in improved efficiency in the care of advanced and a large teaching hospital, a hospice home care terminal cancer patients in Spain. Abstract number: 654 service and a 6 bedded hospice inpatient unit Presentation type: Oral over a 6 month period were included. A PPI Poster number: score was assigned to each patient at first assessment, and patients were followed until A shorter version of the Mini-Mental State death or time of census. Results: 87% of patients Examination (MMSE) can be used to had a diagnosis of cancer; 13% had non- screen for delirium malignant conditions. 43% of cancer patients were receiving radiotherapy and/or Marianne Hjermstad, Institute for Behavioural chemotherapy. 3 week survival was predicted Sciences in Medicine, Oslo, NORWAY, Peter with positive predictive value (PPV) of 87% and Fayers, University of Aberdeen, Aberdeen, negative predictive value (NPV) of 75% GREAT BRITAIN, Anette Ranhoff, Ulleval (sensitivity 64%, specificity 92%). 6 week

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 143 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Abstract number: 657 definition and need to consider spirituality time frame of one month. Conclusion: The data Presentation type: Oral apart from religion. Following on from from this stage was used to reduce a 60 item Poster number: feasibility work, a self-assessment questionnaire measure to a 53 item measure. The next stage of to assess spirituality has been developed. Aim: development is to further reduce the questions The PAT-C project Quality of life To test the psychometric properties of the on the measure, to test the validity and internal questionnaires for palliative care: is ‘Meaning and Motivation Scale’ Method: 300 consistency and to assess how these questions physical function neglected? patients and staff from various sites (Marie may be scored and acted upon to promote Curie Hospice Hampstead, Marie Curie Head appropriate referrals to palliative care. Marit Jordhøy, Pain and Palliation Research Office, Royal Free Hospital, St Joseph’s Hospice, Group, Bodo, NORWAY, Gerd Ringdal, 3 North London general practices, London Department of Psychology, Norwegian Metropolitan University) are completing the Abstract number: 660 University of Science and Technology (NTNU, questionnaire on two separate occasions two Presentation type: Oral Trondheim, NORWAY, Jorunn Helbostad, Dep. weeks apart to test for test/re test reliability. Poster number: of Neuroscience, Norwegian University of Factor analysis will identify which items should Science and Technology (NTNU), Trondheim, remain in the tool. Preliminary results: Assessment of Patients in Palliative Care NORWAY, Jon Håvard Loge, Department of Preliminary analysis of the data (234 complete Services using the Minimum Data Set for Behavioural Sciences in Medicine, University of data sets – quantitative analysis) showed that Palliative Care – (MDS-PC) Instrument Oslo, Oslo, Stein Kaasa, Inst of Cancer Research internal reliability/consistency of the scale was and Molecular Medicine, NTNU, Trondheim high. Test–retest reliability revealed Valgerdur Sigurdardottir, Landspitali University moderate/good strength of agreement for 46 Hospital Kopavogur, Kopavogur, ICELAND, Introduction: Physical dysfunction, experienced out of the 47 items on the questionnaire. Three Ingibjoerg Hjaltadottir, Landspitali University by all palliative care patients, affects most main factors were identified through factor Hospital Landakot, Reykjavík, ICELAND, aspects of life and is among the most distressing analysis. Some respondents commented on Gudrun Dora Gudmannsdottir, Landspitali concerns. Thus, physical function (PF) is a certain questions being unclear/ ambiguous in University Hospital Landakot, Reykjavík, crucial domain for quality of life (Qol) meaning (371 single questionnaires – ICELAND, Pálmi V. Jonsson, Landspitali assessments. Purpose: To review PF assessments qualitative analysis). Conclusions: The University Hospital Landakot, Reykjavík, of Qol instruments developed for palliative care instrument appears to have face validity, is ICELAND Methods: For instrument identification, a acceptable to patients and is reliable. Our aim is Medline search (PubMed) was performed (April to apply it in clinical and population studies to The Minimum Data set for Nursing Home care 2004) using the terms (palliative care OR end of understand how spirituality contributes to is valid and reliable instrument used life care OR terminal care) AND quality of life health and health care. internationally and in Iceland since 1994. A AND (assessment OR instrument OR MDS-PC is now under development. During six questionnaire). Of 1189 hits, 878 were excluded months a clinical epidemiological study of this as irrelevant (e.g. case reports, educational Abstract number: 659 instrument was conducted in three different papers). Among the remaining 311, named Presentation type: Oral types of PC settings in Reykjavik; PC team, free instruments were detected in 203 abstracts and Poster number: standing home care hospice units and hospital included in this report. Results: Of 133 palliative inpatients units. The purpose was: 1) individual instruments detected, 35 were Piloting the Palliative Care Screening to test the instrument in palliative situations in identified as developed for palliative care. The Scale with patients who have an Iceland and to participate in the international content of these was explored. 7 tools assessed advanced illness development. 2) To get detailed information on symptoms, 2 satisfaction with care, 5 the patients’ population receiving PC services. existential/emotional issues, 1 was a global Janine C. Bestall, University Of Sheffield – 3) To develop quality indicators. 4) To search for uniscale. 5 multidimensional instruments had Academic Palliative Medicine Unit, Sheffield, prognostic factors regarding death at home, no PF items, and for 3, only brief descriptions South Yorkshire, GREAT BRITAIN, Nisar Ahmed, discharges and hospitalisation. A nurse and a indicating no PF assessment were obtained. 12 University of Sheffield, Sheffield, GREAT doctor filled out the instrument three times instruments included PF assessment, 2 were BRITAIN, Kathy Dobson, University of Sheffield, during the study period for all new patients: At comprehensive palliative performance scales for Sheffield, GREAT BRITAIN, Sheila Payne, the beginning of service, 2 weeks later and at staff’s assessment, 10 were multidimensional University of Sheffield, Sheffield, GREAT discharge. Following aspects were enlisted: including 2 to 8 PF items. Items’ content was BRITAIN, Sam Ahmedzai, University of Health conditions, oral/nutritional status, skin non-consistent, 2 instruments used the Sheffield, Sheffield, GREAT BRITAIN condition, cognition, communication, mood ECOG/WHO performance scale, the others and behaviour, psychosocial well-being, included various aspects of selfcare, mobility, Background: The Palliative Care Screening Scale physical functioning, continence, medications, help needs or participation in activities (work, (PCSS) has been developed to assess the treatments and procedures, hobbies, transportation). Conclusion: Despite palliative care needs of patients with an responsibility/directives, social relationships, its importance, PF assessment seems a minor advanced cancer or non-malignant illness. Such discharges. This is the first longitudinal study part of palliative care instruments. Clear a measure may help professionals to make an using MDS-PC resulting in 174 patients and 420 definitions and conceptualisation of PF are appropriate referral to palliative care. Objective: assessments. The instrument seems difficult to needed, as well as a consensus on relevant (1) To identify the palliative care needs of use in hospital PC teams but is better suited for aspects, and improvement of instruments. patients who have an advanced illness and (2) inpatient service. Many aspects seems more Performance scales already developed should be To reduce the number of questions on the adapted to geriatric than advanced cancer further tested PCSS. Method: The PCSS was developed patients. Besides population-based information psychometrically and consisted of 59 questions on PC services in Iceland we have collected paired with two response formats about valuable information that will help guide Abstract number: 658 frequency and distress plus one open-ended further improvement and development of the Presentation type: Oral question. A minimum of 61 patients were instrument. Poster number: required to test for feasibility and redundancy. Questionnaire data were recorded in SPSS and Study to test the psychometric properties an item analysis was performed for each section Abstract number: 661 of the ‘Meaning and Motivation Scale’ on the measure. Qualitative data from the Presentation type: Oral feedback form were content analysed. Both Poster number: Kelly Barnes, Marie Curie Palliative Care R&D types of data were used to make a decision Unit, London, GREAT BRITAIN, Michael King, about which questions to change, remove or Introducing systematic symptom Royal Free and University College Medical keep on the measure. Results: Sixty-three assessment in a large geographical area: School, London, GREAT BRITAIN, Louise Jones, patients were interviewed. Nine questions were Clues to success Royal Free and University College Medical removed because the question was not specific School, London, GREAT BRITAIN, Joseph Low, to palliative care or did not pick up differing Dagny Faksvåg Haugen, Regional Centre for Marie Curie Palliative Care Research and levels of distress or had low correlations. Two Palliative Care, Bergen, NORWAY, Sigbjørg Development Unit, London, GREAT BRITAIN, questions were combined as they were Eriksson, Regional Centre for Palliative Care, Susie Wilkinson, Marie Curie Palliative Care measuring similar concepts (sadness and Western Norway, Bergen, NORWAY Research and Development Unit, London, depression). Three questions were added two GREAT BRITAIN about sleepiness (morning and evening) and Background and Aims: A valid assessment is a one about bladder problems. Two open-ended prerequisite for good symptom relief. Since Background: Studies have suggested that questions were added to record any other 2002, the Regional Centre of Excellence for religious involvement or spirituality is symptoms or problem that patients needed help Palliative Care, Western Norway, has been associated with better health outcomes. Many with. All the questions were rewritten so that conducting a developmental project aimed at instruments measuring spirituality are they were easier to comprehend. On the new 53 introducing systematic symptom assessment for unsatisfactory because of the difficulty of item PCSS patients recorded symptoms over a all palliative care patients in the region. The

144 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Invited lectures and oral presentations

Western Norway Health Care Region covers a Abstract number: 663 died during that period died at home. population of 0.9 million. The area is served by Presentation type: Invited Conclusion: The majority of children dying 11 somatic hospitals and 86 local authorities, Poster number: from cancer in Germany do not have access to and has approximately 2,100 cancer deaths per comprehensive palliative care services at home. year. ESAS (Edmonton Symptom Assessment Pediatric Palliative Care in France : a System) was chosen as the symptom assessment recent approach tool. Methods: Strategies used to introduce ESAS: ● A project nurse travelling extensively in Chantal Wood, Hôpital Robert Debré, Paris, Abstract number: 665 the region to provide teaching resources ● France Presentation type: Invited Project locations at hospitals which serve as Poster number: bases to reach nearby districts. New locations The need for palliative care in children seems a have progressively been included each year, recent necessity in France. Care-related Distress in Parents Losing a giving a total of 14 in 2004. ● Designated Up to now, most of the teams thought that Child to Cancer: A Population-based Long- nurses in charge of the project at each location they could deal correctly with the patient, his term Follow-up ● Close follow-up of staff at the project family and siblings. locations, via telephone, e-mail, and visits Palliative care had been developped for Ulrika Kreicbergs, Clinical Cancer ● Multidisciplinary teaching sessions ● Project cancer patients or patients with AIDS. Epidemiology, Stockholm, SWEDEN, Unnur information provided on the internet. Patient But little was done for other chronic diseases Valdimarsdottir, MEB, Stockholm, SWEDEN, information leaflet. ● ESAS included in the and for the bereaved families and siblings Erik Onelöv, Oncology and Pathology, form for referral to the regional palliative In France, 2500 to 4000 children die every Stockholm, SWEDEN, Olle Björk, Women and medicine unit ● ESAS-lunches with case year due to a disease. Child’s Health, Stockholm, SWEDEN, Gunnar discussions ● ESAS presented in all relevant Different aspects are to be approached: Steineck, Oncology and Pathology, Stockholm, health care educational courses Results: ESAS ● Units or hospices : SWEDEN, Jan-Inge Henter, Institution Women has been introduced into routine clinical work ● There are no pediatric palliative care mobile and Child’s Health, Stockholm, SWEDEN at all project locations, as well as in nursing units in France homes and municipal home care. An evaluation ● Must there be beds in certain hospitals? Background: Little is known about how care- performed by 68 health care workers in ● Is there a need for hospices as there are in the related factors affect bereaved parents in a long- November 2003 showed that the systematic use UK? term perspective. We conducted a population- of ESAS is a useful tool, but that the registration ● Must a network with the adult pallaitive based, nationwide study to identify potential may be even more widely used. A new world be created due to the few number of stressors among parents 4 to 9 years after losing evaluation will be performed in October 2004. pediatricians and nurses specialized in a child to cancer. Conclusions: In 2001, we Conclusions: This project demonstrates that children? attempted to contact all parents in Sweden who systematic symptom assessment may be ● How to improve the return to their homes of had lost a child to cancer in 1992–1997. The implemented in a large geographical area. The children? parents were asked, through an anonymous process is time-consuming. Systematic follow- ● Create a network with the general postal questionnaire, about their experience of up, motivation, and repeated provision of practioners? the care given and to what extent these information/education are clues to success. ● Develop home care? experiences still affect them at follow-up. ● Have the help of voluntary workers? Results: Information was supplied by 449 (80%) ● How to educate the doctors and nurses? of 561 eligible parents. Among 196 parents of Abstract number: 662 ● Special courses in palliative care developped children whose pain could not be relieved, 111 Presentation type: Invited in university diplomas (57%; 62% among mothers and 48% among Poster number: ● Creating a medical speciality of “pain and fathers) were still affected by it 4 to 9 years after palliative care” bereavement. Among 138 parents reporting that Paediatric palliative care in the UK: ● How to work with other french speaking the child had a difficult moment of death, 78 a working model? countries: (57%; 67% among mothers and 44% among ● Sharing expertise and congresses with Canada fathers) were still affected by it at follow-up. The Richard Hain, Department of Child Health, ● Creating a documentation center for pediatric probability of parents reporting that their child Wales, UK palliative care had a difficult moment of death was increased Palliative care in children is slowly being (RR 1.4, 95% CI 1.0–1.8) if staff were not present In the United Kingdom, palliative medicine in developped in France. at the moment of death. Ten per cent of the adults has evolved largely along a hospice A reflexion is taking place to choose the best parents (25/251) were not satisfied with the care model. St Christopher’s Hospice was the first system for our country and it’s culture. given during the last month at a paediatric institution to try to bring a high degree of haematology/oncology centre; the specialist medical and nursing expertise to bear, corresponding figure for care at other hospitals not on the cure of a condition, but on the relief Abstract number: 664 was 20% (33/168). Conclusions: Physical pain of symptoms in a supportive emotional, social Presentation type: Invited and the moment of death are important to and spiritual environment. This model has, we Poster number: address in end-of-life care of children with believe, been effective in adults. cancer in trying to reduce long-term distress in In children, however, the model is much Status Quo of Pediatric Palliative Care bereaved parents. more complicated. Delivery of palliative in Germany medicine to children is based on an assumption that, where possible, the child should be Boris Zernikow, IKP, Datteln, GERMANY, Stefan managed at home. The model has also to be Friedrichsdorf, Christine Wamsler, Andrea APRIL 10 SUNDAY flexible enough to allow delivery of specialist Menke, Wilma Henkel palliative medicine on the ward, the school and the children’s hospice. Paediatric palliative In two nationwide studies we studied i) the medicine in the UK is therefore a specialty that provision of palliative care at home and on the aims to deliver specialist care to the child children’s cancer units and ii) paediatric wherever it is needed, irrespective of location. palliative care by nurse-led home care services In this respect, paediatric palliative medicine for children with cancer and non-cancer life may have more in common with the limiting conditions. Methods: i) a survey of 71 experience in some European countries than (of 73) German pediatric oncology units with the adult specialty in the UK. (response rate 97 per cent) provided the This talk will describe the UK model of information presented. ii) A second survey paediatric palliative medicine, and consider among 132 German nurse-led home care what can be learnt from its weaknesses as well services for children identified 37 services as its strengths. which have gained experience in caring for dying children between 2000–2002. Results: More than 60 per cent of children with malignancies died as in-patients in 2000, less than 40 per cent at home. Twenty-nine pediatric cancer departments were able to provide comprehensive medical palliative home care, nine units incorporate a designated palliative care team or person. Only half of the departments provide bereavement services for siblings. ii) 68 per cent of those children who

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 145 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 146 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 INDEX BY AUTHOR INDEX BY AUTHOR BY INDEX

Abstracts of the 8th Congress of the European Association for Palliative Care, The Hague 2003 Résumés du 8ème Congrès de l’Association Européenne de Soins Palliatifs, La Haye 2003 Index by author

148 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Index by author

A Baylon, J 35 Campbell Jones, N 113 Beccaro, M 22, 34, 107, 108 Campbell, S 47 Aaker, K 112 Beck, D 18, 89 Campos, F 115 Aamotsmoe, T 126 Beck, J 99 Caraceni, A 13, 16, 135, 137 Aass, N 127 Becker, G 120 Carbognani, R 40, 64 Abbas, SQ 50 Bedard, C 19 Carlsson, M 10 Abbas, SZ 50 Bedard, M 85 Carlyle, R 43 Aben, K 111 Beighton, D 88 Caron, M-J 108 Abernethy, A 47, 118, 140, 141 Ben-Ami, S 110 Carr, A 41, 104 Ablett, J 118 Bercovitch, M 54, 58 Carr, F 104 Abraham, A 54 Berezikova, O 106 Carr, S 41 Abu-Saad, HH 30 Bernheim, J 19 Carruthers, A 65 Achterberg, S 54 Besozzi, C 34 Carulla-Torrens, J 63 Adams, G 18 Bestall, J 118, 144 Carvajal, A 8 Adams, R 33 Bianchi, M 128 Casale, G 96 Addington-Hall, J 14, 16, 43, 139 Bider, C 30 Case, R 40 Afa-Zajc, A 114 Biechele, I 28 Cattaneo, D 39 Afolabi, G 130 Bilger, U 58 Cazemierm, G 105 Aherne, M 12 Bilsen, J 13, 19, 20, 53, 75 Cazzaniga, E 56 Ahlquist, P 80 Bingley, A 45, 85, 117 Centeno, C 3, 8, 81, 131 Ahmed, A 118, 144 Binswanger, J 83 Cepublic, E 11 Ahmedzai, S 56, 118, 144 Biro, Z 44 Cerv, B 52 Al Khatieb, A 60 Bitto, M 97 Cervera, JM 141 Albert, S 10 Björk, O 145 Cetto, G 35 Alburquerque-Medina, E 31, 93, Blackman, N 59 Chabert, J 116 94, 142 Blais, M 75 Chan, N 63 Alexopoulou, K 53 Blanchard, M 44 Chapman, A 11 Allard, M 108 Blaszczyk, F 62, 91, 92, 127 Chapman, L 19, 34, 131 Alverola, V 95 Blum, H 120 Chassignol, L 110, 111 Amato, F 91 Blumhuber, H 6 Chatzidimitriou, A 104 Ami, R 58 Boddaert, M 2 9, 123 Cheema, B 120 Amir, Z 105 Boerlage, A 93 Cheng, W-W 86 Amor, M 143 Bogan, C 31 Cherny, N 4 André, B 8, 129 Bonsignori, M 61, 88 Cheung, C-C 89 Andres, I 28 Borasio, GD 10, 2 8, 71, 89, 130 Chirila, O 99 Anselm, R 35, 124 Borcsek, B 112 Chlabicz, S 37 Aoun, S 55 Borghetti, P 50 Christiansen, P 113 Arantzamendi, M 43 Borgia, P 108 Cialkowska-Rysz, A 94 Aresté, V 123 Borgsteede, S 97 Cilla, D 142 Argura, E 104 Borhaug, E 112 Cipriano, A 96, 142 Argyra, E 79 Borsari, M 60 Claessen, S 120 Arngrímsdóttir, O 10 Borsellino, P 45 Claessens, P 26, 51 Arren, M 49 Boso, G 36, 116 Clare, C 128 Arvieux, C 126 Bossers, J 18 Clark, B 49 Åsberg, L 126 Bozek, T 65 Clark, D 3, 45, 65, 82, 85, 108, 117, 122 Ásgeirsdóttir, G 10 Brady, J 32 Clark, K 94 Asp, MB 85, 121 Brailsford, S 88 Clarke, A 33 Asplund, K 114 Braithwaite, M 26 Clarke, MT 106, 109 Aston, T 39, 113 Brash, J 10 Claus, M 101 Ateka, S 122 Brassel, E 90 Clemens, KE 83 Augustyn, B 81 Brazil, K 85 Clicteur, B 18 Breaden, K 27 Clifton, D 26 Brenneis, C 9, 22 Cloherty, M 140 B Bridgman, H 113 Cloin, E 54 Brinkman, A 125 Coackley, A 125 Baan, T 22 Brizuela, R 128 Cochrane, M 30 Baar, F 93 Broeckaert, B 4, 15, 26, 45, 51, 139 Codorniu-Zamora, N 31 Baczyk, E 63 Brown, P 9 Cohen, J 13, 20 Baczyk, M 63, 93 Bruera, E 71, 83, 86, 88 Colleran, M 66 Baecke, J 105 Brugnoli, R 34 Collier, P 33 Baerten, H 18 Brunelli, C 13, 15 Collin, T 23 Baldesare, F 65 Buckholz, G 54 Colombat, P 111 Baldry, C 40 Buckley, BJ 98 Conlon, R 77 Bale, P 106 Buczkowski, K 37 Connors, S 130 Balfour, H 18 Budzynski, J 37 Conroy, M 64 Balmer, S 40 Bueso, C 141 Conti, A 50 Balzarini, E 39 Buess, C 90 Cook, P 46 Bannink, M 52 Burg, E 90 Cools, F 75, 86 Baracos, V 141 Burko, Y 41 Corcoran, GD 85, 96 Barak, F 66 Burman, R 22 Corder, C 40 Barcia, E 122 Burroughs, S 106 Corli, O 122 Barclay, S 61, 140 Buscemi, V 123 Coroon, M 89 Barisone, M 119 Buss, T 101 Corrales-Baz, E 31, 94, 143 Barnes, K 144 Byrne, C 31 Costa, I 62 Barnes, S 103 Costantini, M 22, 34, 107 Bart, HAJ 4, 5 Cote-Brisson, L 19 Bartelt, S 119 C Coughlan, M 30 Basiricò, T 30 Couilliot, M 47 Bassett, M 34 Cabotte, E 29 Courtens, A 7, 30, 45, 62, 99 Baumgartner, J 33 Callaway, M 111 Couture, F 75 Bausewein, C 20, 72, 139 Calvo, F 95 Coventry, P 103 Cameron, S 8 Cozzolino, A 60

Baxter, S 18 AUTHOR BY INDEX

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 149 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Index by author

Crabtree, S 48 Douglas, C 77 Fowell, A 140 Crook, P 115 Douguet, F 47 Francioso, L 61 Cruciani, G 64 Doyal, L 49 Franco, H 8 Crul, B 50 Drijfhout, M 40, 128 Fransson, G 42 Csaba, D 112 Dro, A 92 Frapsauce, A 65 Cunningham, J 64 Ducloux, D 29 Frick, E 28 Cunningham, T 37 Dukowicz, A 94 Friedrichsdorf, S 145 Curiale, V 21 Dunleavy, L 40 Friedrichsen, M 20, 56, 57 Curran, V 116 Dunning, T 87 Froggatt, K 84, 100 Currow, D 27, 47, 55, 118, 140, 141 Duong, P 51 Frohleke, B 28 Cushing, A 49 Dziadura, A 62, 92 Frommherz-Sonntag, R 97 Czepczynski, R 93 Frör, P 28 Fucci, S 45 E Fuggetta, A 64 D Fullarton, A 47 Echteld, M 91, 120 Fürst, CJ 15, 70, 82, 127 D’Amico, G 34 Edelbrandt, C 43 Fusco, F 125 Da Col, D 60 Edmonds, P 22 Daali, Y 116 Eiríksdóttir, J 10 Dahan, A 78, 88 Eisenchlas, J 128 G Dale, O 5, 81, 138 El-Tahtawy, A 96, 142 Dane, B 48 Elfred, A 87 Gaertner, J 92 Daneault, S 109 Ellershaw, J 19, 46, 47, 77, 118, 121 Gagnon, P 75 Daniels, C 18 Elsner, F 70, 92, 138 Galeazzi, G 61, 88 Datta, D 41 Emms, H 63, 77 Galesloot, C 111 Davies, A 88, 135 Emms, N 63 Galloway, L 23 Davies, P 54 Engelhardt, J 20 Gallucci, M 45, 60 Davis, C 84 Engstrand, P 22 Galriça, I 131 Davis, M 18, 76, 77, 88, 119, 120 Eriksen, J 113 Gambles, M 19, 46, 47, 77, 118 Dayer, P 116 Eriksson, S 144 Garåsen, H 110 De Bal, N 12, 116 Ersland, AL 108 García Castaño, A 53 De Beer, T 12 Ervik, B 90, 114 Garcia-Baquero Merino, MT 25, 38 de Boer, M 119 Escher, M 116 Gastmans, C 12, 116 De Conno, F 6, 70, 82 Estfan, B 32, 76, 77 Geertsema, H 41 De Gelder, R 114 Eugene, B 81 Gehmacher, O 127 De Gendt, C 75 Evans, F 47 Gene, R 31 de Graaf-Waar, H 93, 129 Ewers, M 112 George, R 60 De Graeff, A 29, 41, 51, 110 Exton, L 87 George, W 35 de Hulu, M 62 Eychmueller, S 60, 73, 83 Gerharz, E 113 de Kort, S 141 Gernot, E 112 De Lima, L 7, 23 Gerritsen, W 29, 123 De Luca, A 119 F Geurts, P 67 de Luis Molero, VJ 12 Giaccone, G 29 de Nicolás, L 8 Fabbri, L 112 Giaretto, L 113 de Nijs, E 28, 110 Faggiano, F 21 Gili, F 97 de Santiago, A 8 Fahr, U 138 Giommaresi, F 42 De Simone, G 128 Fainsinger, R 22 Glare, P 16, 94 De Vlieger, T 17, 49, 138 Faksvaag Haugen, D 72 Gleeson, A 64 de Walden-Galuszko, K 101 Faksvåg Haugen, D 22, 43, 144 Gomes, B 21, 46 de Wit, A 93, 125 Falconnet, C 51 Gómez-Batiste, X 70, 76, 93, 142, 143 de Wit, R 22, 91, 93, 95, 120 Faria, M 141 Gomm, S 31, 117 Decker, N 58 Farley, J 108 Gontlach-Worobiec, J 62 Defilippi, K 8, 60 Farnham, C 32 Gonzalez, D 36, 116 Dekkers, W 38 Farquhar, M 61 Gonzalez-Barboteo, J 63, 76, 93, 95 del Carmen López, M 131 Fassbender, K 9, 22 Gootjes, J 95, 97, 131 Delbeque, H 111 Fast, J 22 Gorni, G 13 Delbon, P 50 Fayers, P 143 Gorzelanczyk, E 120 Delibegovic, A 26 Faymonville, M-E 103 Gorzelinska, L 63 Deliens, L 13, 19, 20, 75, 86, 97 Fazekas, B 118, 140 Gott, M 33, 48, 84, 103 Derame, L 29 Feenstra, L 119 Govi, D 40, 64 Derni, S 112 Fegg, MJ 89 Grabarczyk, K 91, 92 Derycke, N 49 Feio, M 62 Gradalski, T 130 Deschamps, B 108 Ferguson, E 26 Grande, G 61, 103 Desmeules, J 116 Ferguson, L 104 Grant, K 47 Devereux, J 10 Ferris, F 18, 54, 60, 70 Graugaard, P 48, 76 Devery, K 27 Feuer, DJ 25, 80 Gravou, C 99 Dewar, B 15 Field, D 56, 117 Greaves, J 94 Di Leo, S 34 Field, G 26 Green, A 55 Di Mola, G 45 Filbet, M 70 Gribling, M 54 Di Pietropaolo, D 60 Filitz, J 79 Griessinger N 79, 99 Díaz Hernández, E 12 Fillingham, C 115 Griffiths, F 89 Dickens, C 43 Finlay, I 140 Grimaldi, M 107 Dickman, A 29, 92, 124, 131 Finn, A 114 Groenvold, M 126, 140 Dierckx de Casterlé, B 12, 116 Firth, P 6, 73, 137 Grol, R 25 Dietrich, L 60 Fisher, K 141 Grønvold, M 113 Dion, D 109 Fitzpatrick, P 78 Groot, M 7 Dobson, K 144 Fixson, A 42 Groves, K 31, 34, 40, 106, 128 Dogan, S 109 Fjeldheim, J 52 Grubich, S 105, 113 Doherty, J 92, 124 Foley, K 136 Gruden, M 52 Donnelly, C 58 Font, T 123 Grundy, N 102 Donnelly, S 58 Fosså, S 127 Gudmannsdottir, G 144 Donnem, T 90, 114 Foster, S 77 Gudmundsdóttir, G 10

150 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Index by author

Guisado, H 29 J Kusha, M 110 Gutovic, J 65, 111 Kwarcinski, MA 98 Guttvik, F 109 Jack, B 19, 46, 79 Gysels, M 66 Jackson, L 26 Jacobs, J 131 L Jacobs, N 40 H Jadwiga, P 101 Labranche, D 108 Jakobsen, G 109, 110 Lacouture, P 98 Haaijman, J 111 Jakobsson, M 56 Lagman, R 18, 32, 77, 88 Haddad, A 120 Jansen, WJJ 105 Lambert, M 75 Haegi, D 60 Jarvis, E 56 Lapeira, J 59, 116 Häfner, C 97 Jehser, T 28 Larkin, P 3, 74, 81 Hain, R 145 Johnstone, R 140 Larsen, H 140 Hait, B 99 Jones, L 21, 36, 44, 116, 125, 128, 144 Laureys, S 103 Hale, A 32 Jonsson, P 144 Laval, G 126 Hall, M 117 Joranson, D 7 Laverty, D 115 Halldórsdóttir, S 47 Jordhøy, M 22, 28, 75, 90, 107, 144 Le Divenah, A 110, 111 Hamblin, G 46, 47 Jünger, S 138 Leam, C 17, 58 Hamers, JPH 99 Junin, M 128 Leboul, D 47 Hammond, D 38 Junker, U 18 Ledeboer, Q 119 Hanks, G 70 Jusic, A 11 Lee, J 102 Hansdóttir, H 47 Leget, C 50 Hansford, P 106 LeGrand, S 18, 32, 76, 88 Hanson, A 21 K Lennan, E 37 Hanssen, S 57 Leppert, K 33, 35, 124 Harding, R 17, 23, 46 Kaasa, S 3, 8, 22, 25, 28, 43, 75, 80, 85, Leppert, W 77, 94, 95, 99, Harnett, I 27 101, 110, 121, 129, 136, 139, 143, 144 114, 129, 130 Harris, F 122 Kalyadina, S 124 Levy, J 58, 104 Harris, S 96, 142 Kamboj, S 116 Leyland, S 40 Haskins, C 10 Karamitreva, P 42 Lieverse, P 52, 93 Hatto, R 25 Kass, R 77 Lifshitz, S 66 Håvard Loge, J 8, 25, 28, 48, 76, 80, Kassim, Z 117 Likar, R 79, 91 85, 121, 129, 144 Kato, T 24 Lillie, C 141 Hawker, S 84 Katsouda, E 44 Lindeman, E 28 Haworth, D 113 Kazmierczak-Lukaszewicz, S 94 Lindsay, F 7 Hayes, M 87 Kazunari Abe, P 114 Ling, J 15 Hegarty, M 27 Keating, N 22 Lipp, V 12 Hegedus, K 44, 73, 82, 111 Keegan, O 86, 108 Littlewood, C 77, 92, 102 Helaers, P 18 Kelly, ML 85 Lloyd, M 11 Helander, L 57 Kendall, M 102, 122 Lock, A 84 Helbostad, J 28, 101, 144 Kendall, S 49 Lodge, P 128 Hendrichova, I 42 Kerr, C 84 Løken, K 126 Henke, M 119 Killin, R 40 Lomax, P 34 Henkel, W 145 King, M 21, 36, 44, 144 Lombardi, A 96 Hennessy, M 63 Kirkov, J 119 Longstaff, S 109 Henter, J-I 145 Kishtovich, A 124 López, B 8 Herincs, G 100 Kissane, D 16, 71 Lopez, I 94 Herlofson, B 126 Kite, S 37, 39 Loveridge, M 57 Hershko, H 41 Klaschik, E 14, 83, 142 Low, J 140, 144 Hesselmann, G 28, 51, 110 Klee, M 36 Lowe, B 26 Hibble, A 140 Klepstad, P 3, 15 Luczak, J 19, 63, 77, 129, 130 Higgins, S 78 Kloke, M 17 Ludwig, H 18 Higginson, IJ 21, 22, 46, 66, 70, Kluziak, M 19 Luff, G 43 80, 82, 84, 139 Knandu, M 60 Luker, K 105 Hillier, R 38 Knights, S 32 Lundström, S 30, 127 Hillier, V 79 Koffman, J 80 Lussier, V 109 Hjaltadottir, I 144 Kogan, M 142 Luz Azuara, M 122 Hjelmeland Ahmedzai, H 32, 56 Köhler, N 33 Lyndon, J 23 Hjelmeland Ahmedzai, S 32 Koks, T 62 Lyngstadaas, A 76 Hjermstad, M 25, 143 Kolchakova, P 42 Hockley, J 15, 74 Kongsgaard, U 76 Hoekstra-Weebers, J 115 Koningswoud-ten Hove, J 125 M Hofmann-Wackersreuther, G 54 Kopalidou, K 53 Hooft, P 20 Koppert, W 78, 79 MacDonald, N 72 Hook, M 111 Körber, N 78 Maffeo, M 30 Hopkinson, J 80 Koshy, C 96 Magnani, P 40, 64 Horne, G 46 Kosmidis, D 53 Maher, EJ 26 Houghton, A 80 Kotnik, I 11 Mahmood, K 79, 89 Hudson, P 55, 87 Krajnik, M 37 Majethia, N 118 Hugel, H 54, 77, 102, 125 Krasteva, N 42 Major, D 19 Hughes, N 122 Kraus, F 38 Makin, M 77 Hughes, S 105 Kreicbergs, U 145 Malinverni, E 53 Hunter, S 29 Kristjanson, L 55 Maltoni, M 112 Hurson, K 109 Kroeber, T 32 Manno, P 35 Krol, R 111 Månsson, A 113 Krueger, P 85 Månsson, W 113 I Kuchibhatla, M 140 Marcin, J 101 Kudryavtseva, I 100 Marcoux, I 13 Ihmsen, H 78 Kuin, A 8 Marcucci, F 61 Ingleton, C 21 Kunz, R 83 Markstein, C 121 Ionova, T 124 Kuprella, T 20, 89 Marquet, K 26, 51 Iucci, M 42 Martín, M 59, 112, 116

Kuriakose, R 96 AUTHOR BY INDEX

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 151 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Index by author

Martin, P 26 N Palummeri, E 125 Martin-Comin, J 93 Pambuku, A 66 Martínez, M 8 Nabal-Vicuña, M 63 Papke, J 27 Martini, F 112 Nadstawek, J 126 Parker, C 103 Martinsson, U 30 Nagy, E 53 Parpa, E 44 Mason, C 36, 57, 106, 109, 121 Nakatani, T 25 Parr, A 34 Massacesi, C 61 Nardi, A 91, 115 Passchier, J 120 Mastroianni, C 42 Nascimben, O 66 Passon, M 101 Mastromauro, C 66 Nash, TP 96 Pattynama, PMT 129 Masureel, A-S 18 Nathaniel, R 66 Paulsen, O 22 Mathis, G 127 Nauck, F 83, 142 Pautex, S 29 McAuley, G 26 Nazareth, I 21 Pawel, S 41, 63, 77, 92, 99, 114, 129, McCainey, C 85 Negro, S 122 130 McClive, K 20 Neira, M 141 Payne, M 61 McCormack, M 106 Neudert, C 83 Payne, S 6, 9, 11, 16, 21, 48, 49, 56, 71, McDermott, E 45, 85 Neuenschwander, H 39, 128 74, 84, 100, 103, 117, 118, 123, 125, 144 McDowell, D 85 Neumann, N 97 Paz Carrizo, M 12 McEnhill, L 59 Newman, S 113 Pearse, H 128 McNulty, A 10 Ngo, L 63 Peat, S 41 McQuillan, R 107 Nickel, N 12 Pedersen, L 43, 126, 140 Meade, T 60 Nicpon, M 96 Pedroni, C 40, 64 Measson-Bouhafs, L 81 Nilsson, I 10 Peel, ET 109, 130 Medici, M 66 Nissen, A 43 Pella, A 105 Medylewsky, M 36 Nitta, M 25 Pellas, F 103 Menke, A 145 Noble, T 124 Pepersack, T 100 Menten, J 18, 26, 51 Nocchi, M 88 Pereira, J 12, 23, 141 Mercadante, S 5, 135 Noergaard Munch, T 88 Pereyra, F 128 Mergam, A 100 Nolan, M 21 Perez, R 97 Merino, A 93 Nordoy, T 90, 114 Peruselli, C 30, 105, 113 Merlo, F 22 Norup, M 53 Pesenti, C 39 Mess, E 99, 114, 129 Norval, D 23 Pestinger, M 138 Mestrallet, J-P 126 Novik, A 124 Petersen, M 126, 140 Meyboom-de Jong, B 115 Nowak, S 120, 121 Peuckmann, V 113 Miccinesi, G 107, 108 Philipz, J 79 Michael, N 58 Pierangeli, A 96 Michalak, M 120 O Pinedo, H 29 Michilsen, N 114 Pintens, C 18 Mikolaj, M 94 O’Brannagáin, D 86, 108 Pizzuto, M 122 Milberg, A 56, 57 O’Brien, T 27, 31 Planas-Domingo, J 63 Milicevic, N 65, 111 O’Connor, S 45 Plassais, L 65 Mills, S 60 O’Doherty, C 89 Platzer, M 91 Minutiello, G 39 O’Donnell, V 10 Pollard, L 46 Miotto, J 142 O’Leary, N 27, 104, 119 Pollard, N 46 Miroslaw, S 62 O’Neill, J 41 Pope, S 48 Misiewicz, B 94 O’Reilly, M 78 Porchet, F 3, 83 Modlinska, A 101 O’Siorain, L 7, 30, 32, 78 Porta, E 34 Modonesi, C 112 Oakes, S 54 Porta-Sales, J 31, 63, 86, 93, 142, 143 Moehring, B 98 Obbens, E 142 Powell, P 40 Moka, E 79 Obralic, N 110 Pozo, R 59, 116 Molenkamp, CM 99 Óladóttir, A 10 Pragt, E 13 Molto, A 128 Oldenmenger, W 91, 95 Proot, I 30, 45 Momm, F 119, 120 Oldervoll, L 80, 85, 121 Provoost, V 75, 86 Mongeau, S 109 Oldham, J 79 Prugovecki, A 51 Monroe, B 9 Oleksa, R 93 Pruyn, J 62, 119 Montanari, L 64 Oliviere, D 6, 38, 48, 58, 135, 137 Purnell, J 31, 40 Monteiro, C 62 Olsson, M 42, 56 Montella, M 34, 108 Olsson-Doherty, E 56 Montero, A 141 Olthuis, G 38 Q Moonen, A 13 Onelöv, E 145 Moonen, G 103 Opalinska, R 39, 62, 63, 91 Quarta, M 64 Moore, R 48 Oronska, A 41, 62, 63, 92, 130 Quibén Pereira, R 12 Morasso, G 34 Ortega, A 112 Quinn, K 87 Mordalski, S 127 Oshlak, B 98 Morgado, N 59, 112, 116 Osse, B 25 Morris, C 109 Ostgathe, C 3, 83, 142 R Mortier, F 53, 75, 86 Otter, R 115 Morvai, T 112 Ottesen, S 126 Radbruch, L 3, 92, 138 Moryl, N 142 Ottonello, A 36, 116 Ramet, J 86 Mosoiu, D 7, 16 Oxberry, S 128 Ranhoff, A 143 Moynier, K 51 Oz, V 110 Rannestad, T 129 Mulder, S 131 Read, S 9, 55 Müller Busch, HC 4, 28 Reder, R 98 Muller, M 72, 73 P Reid, D 56, 117 Munday, D 79, 89 Reijm, MC 129 Muniz, P 91, 115 Paccagnella, A 66 Reiter-Theil, S 138 Muriel, C 141 Paci, E 53 Rekkedal, UM 107 Murphy, D 46, 47 Paes, P 17, 36, 103 Relf, M 56, 117 Murray, A 23 Pahl, N 108, 109 Reuzel, R 50 Mustheniotou, E 53 Palacio, A 95 Rhebergen, A 17 Muszbek, K 111 Palacios Mackay, M 23 Riccò, D 40, 64 Mystakidou, K 44 Palmer, JL 86, 88 Richards, D 103 Paltiel, H 80, 85, 121 Richards, E 102, 115

152 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Index by author

Richardson, A 21, 43, 66 Schmid, B 10 Sykes, N 50 Richel, D 141 Schmucker, P 42, 52 Szöllosi, M 111 Riedner, C 28 Schotsmans, P 26, 51 Szymkowiak, M 96 Rietjens, J 14 Schrijnemaekers, V 30 Rigby, S 102 Schrofer, Y 13 Rikov, I 124 Schulze, HW 99 T Rimac, M 64 Schüttler, J 78 Ringdal, G 8, 28, 75, 129, 144 Schuurmans, J 131 Tadjali, M 44, 59 Ringdal, K 75 Schweitzer, S 33, 35, 124 Takahashi, H 97 Ripamonti, C 83 Scriven, L 115 Tann, A 54 Ritchie, K 25 Sealy, P 25 Taylor, A 36 Ritossa, C 53 Seamark, D 84, 103 Taylor, M 86, 108 Roberto, S 91 Sebastian, P 96 Taylor, S 27 Roberts, D 27, 34 Sedemund-Adib, B 52 Terwiel, C 95 Robinson, V 41, 50, 58, 60, 106 Serna, M 94 Terzoli, L 96 Roca, R 76 Serrano-Bermudez, G 31, 86, 93, Teunissen, S 28, 29, 110 Rochette, M 19 95, 142 Thomas, C 45, 85 Rodio, G 36, 116 Seskevicius, A 105 Thomas, K 124 Rodríguez, E 123 Seymour, J 11, 33, 46, 74, 84, 138 Thompson, A 92 Rodríguez-Coto, V 53 Shagula, C 60 Thompson, I 91 Rogg, L 48, 76 Shah, S 44 Thorp, R 44, 59 Rolls, E 9 Shaheen, P 32, 76, 77 Thorpe, R 47 Romeo, M 88 Shelby-James, T 47, 118, 141 Tieman, J 118 Romero, E 112 Sherry, K 26, 44, 104 Tiernan, E 64, 104, 119, 143 Rønnevik, EN 108 Shi, M 98 Tietze, A 12 Ronning, M 109 Shimoyama, N 97 Tlam, T 13 Rose, J 104 Siafaka, I 79, 104 Tobin, D 20 Rosen, S 98 Sigurdardottir, V 43, 144 Todd, C 61, 103 Rosenburg, J 55 Silber, E 22 Todoulos, E 43 Rosenfeld, B 44 Silverman, R 38 Tookman, A 21, 36, 44, 116, 128 Roser, T 87 Simon, A 12 Toscani, F 45 Rosland, J 52 Simons, A 131 Toseland, R 20 Rosolowska, M 39, 62 Singler, B 78 Tracey, G 59 Ross, H 84 Sittl 78, 91 Troester, A 78 Ross, W 28 Sittl, R 78, 79, 99 Trujillo, R 59, 112, 116 Rossi, P 108 Sives, D 104 Tsikali, A 53 Rossini, S 88 Sjøgren, P 14, 113, 137 Tsilika, E 44 Royle, D 128 Skilbeck, J 21 Tsokantaridis, C 53 Russell, D 140 Skogstad, L 143 Tsokantaridis, H 53 Russell, I 140 Slager, M 5 Tuca-Rodriguez, A 31, 76, 93, 142, 143 Russell, R 44 Slater, L 9 Tuffrey-Wijne, I 36, 74 Ruzsa, A 111 Sletvold, O 101 Twomey, F 27, 85, 96 Ryan, J 64 Small, N 48, 122 Twomey, M 78 Rybacka, M 62 Smeding, R 42, 121 Twycross, R 7 Rybak, D 130 Smith, J 102, 124 Rydé, K 20 Smith, T 20 Ryder Richardson, E 113 Smitt, P 91 U Rydstrand, K 57 Smyth, H 27 Sobonya, N 57 Uchida, N 25 Sonne, N 140 Urch, C 137 S Sorin, P 99 Urday San Miguel, R 65 Soro, G 119 Usborne, C 20, 131 Sabatowski, R 92, 136 Sowinski, J 93 Usenko, O 106 Sacerdote, P 6, 14 Speck, P 60 Ushikubo, M 102 Saeteren, B 57 Spichiger, E 44 Saharia, K 128 Stachowiak, A 89, 96, 120, 121, 124 Saito, Y 25 Stambaugh, J 98 V Sala, C 76 Stamer, U 14 Salgueiro, S 116 Stefani, L 126 Vadalouca, A 79, 104 Saltmarsh, P 125 Stein, C 91 Valdimarsdottir, U 145 Sambor, K 39 Steinbach, K 33, 35, 124 Van Beurden, B 49 Samczewska, G 94 Steineck, G 145 van Delden, J 14 Samonigg, H 130 Stevens, R 32 van den Aardweg, E 67 Sánchez, A 123 Stevenson, J 47 Van den Block, L 19 Sánchez, L 131 Stiefel, F 83 Van den Branden, S 45 Sanchez, Y 122 Stirzaker, S 46 Van Den Broek, J 97, 131 Sand, L 86 Stockler, M 94 Van den Eynden, B 62, 101, 129, 143 Sanderman, R 115 Stone, C 143 Van Den Noortgate, N 75 Sanders, C 33 Strada, I 64 Van den Toorn, LM 127 Sanna, P 39 Strang, P 20, 86 Van der Breggen, M 125 Santo, A 35 Strasser, F 72, 83, 90 van der Heide, A 14, 34, 53, 118, 121 Sanz Ortiz, J 53 Strätling, M 42, 52 van der Linden, B 8 Sanz Rubiales, A 8 Strohscheer, I 130 van der Linden, MHM 29, 123 Sargeant, A 48, 75 Stronks, D 22, 93 Van der Maas, P 34, 121 Sarkar, S 77 Strutt, R 7 Van der Rijt, CCD 13, 52, 120, Sarvimäki, A 57 Stüber, F 14 121, 127, 129 Schaap, AE 127 Sulkowska, A 92 van der Rijt, K 22, 91, 93 Schade, E 25 Sulkowska-Smolanska, A 62 van der Velden, L-A 119 Scharf, V 52 Sung, E 94 van der Wal, G 13, 14, 20, 97 Schertlin, T 54 Svedala, J 60 van Dijk, M 45 Schiessl, C 99 Swanton, R 98 Van Doorslaer, O 107 Schildmann, J 49 Swart, S 41, 67 Van Eeckhout, P 103 INDEX BY AUTHOR BY INDEX

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 153 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Index by author

Van Eijk, J 97 Williams, A 79 Van Heest, F 115 Wilson, D 9 van Hoef, L 30 Wilson, J 123 van Iersel, T 18 Winkler-Spytkowska, B 91 Van Leeuwen, AF 34 Winslow, M 65, 122 van Oorschot, B 12, 33, 35, 124 Wirz, S 126 Van Royen, P 101, 143 Wiseman, H 54, 61 van Tol, C 97, 131 Wiseman, J 77, 92 van Triest, E 29 Witherspoon, R 84 Van Veluw, H 13, 52 Wollenberg, B 20 van Wijk, L 141 Wood, C 145 Van Zuylen, L 13, 52, 67, 93, Woods, D 118 114, 118, 129 Woodson, M 98 Vandenplas, Y 75 Woyton, E 39 Vanderoost, A 101 Wright, M 73, 117, 122, 136 Vara, F 8, 131 Wu, D 96, 142 Varga, J 112 Wüstner, A 127 Varghese, B 96 Vashi, V 96, 142 Vassy, C 47 X Veerbeek, L 118 Vejlgaard, T 43 Xia, Y 98 Verhage, S 95 Verhagen, C 54, 131 Verhagen, S 51, 111 Y Vermeij, D 95 Vernooij-Dassen, M 7, 25 Yasnitskyy, V 63 Verpoort, C 116 Yavuzsen, T 120 Versteeg, I 5 Yordanov, N 95 Vertongen, S 101 Young, C 102 Villa Vigil-Escalera, A 12 Young, T 26 Villard, M-L 126 Visca, G 119 Visser, A 34, 114, 121 Z Vivat, B 22 Voest, E 29 Zähringer, A 120 Volegova-Neher, N 119 Zaninetta, G 50 Vollmann, J 49 Zecca, E 13 Voltz, R 135, 137 Zermani, E 39 von Hofacker, S 52, 76 Zernikow, B 145 von Hornstein, W 58, 97 Zhang, T 86, 88 Voogt, E 34, 121 Zietek, J 39, 62 Vrehen, H 28 Zimmermann, C 59 Vvedenskaya, E 100, 105 Zublena, N 30 Vvedenskaya, I 100, 105 Zulian, G 51 Vydelingum, V 87 Zuliani, S 35 Zylicz, Z 62 W

Wagner, B 33 Wagner, F 142 Wagner, Fr 127 Wakefield, A 55 Walsh, D 5, 18, 32, 76, 77, 82, 88, 119, 120, 136 Walsh, K 36 Wamsler, C 145 Wanrooij, B 41 Ward, C 39 Ward, J 37, 39 Ward, P 26 Wartenberg, HC 126 Wasner, M 10, 89, 135 Waterman, D 10 Watmore-Eve, J 55 Watson, J 15 Weber, C 51 Weber, O 60 Wedel, R 23 Wehrfritz, A 78 Weiher, E 42 Welshman, A 71 Welton, M 33 Whan, P 11, 107 Wheeler, M 61 Wilbrink, N 5 Wilhelm, M 54 Wilkins, A 32 Wilkinson, S 140, 144 Willems, D 41, 141 Willey, J 86, 88

154 Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005 Index by author INDEX BY AUTHOR BY INDEX

Abstracts of the 9th Congress of the European Association for Palliative Care, Aachen 2005 155 Résumés du 9ème Congrès de l’Association Européenne de Soins Palliatifs, Aix la Chapelle 2005