Health System Reform and Care at the End of Life: a Guidance Document Acknowledgments
A number of individuals have generously contributed to the development of this Guidance document. Coming from different specialties and interests, they share a common vision for quality care at the end of life for all Australians. Their contribution is gratefully acknowledged.
Core writing team:
This document has been prepared by the following staff of Palliative Care Australia.
Vlad Aleksandric, Deputy CEO, Palliative Care Australia Sue Hanson, Director Quality and Standards, Palliative Care Australia
National EoL Framework Forum Planning Group:
The National EoL Framework Forum Planning Group provided initial advice regarding the process for the development of the document.
Dr Will Cairns Prof Philip Davies Prof Jane Ingham Nick Mersiades Secretariat: Donna Daniell Sue Hanson Bruce Shaw
National EoL Framework Forum:
The National EoL Framework Forum provided advice to the core writing team during the course of the development of the document, expert input as required and provided a forum for the discussion of the key ideas and recommendations contained within it. The views represented in the Guidance document reflect the general discussion and may not necessarily reflect the opinions of every member, or of the organisations they represent.
Dr Andrew Boyden National Director, Clinical Issues, Heart Foundation
Dr Will Cairns Director, Townsville Palliative Care Service, Qld
Prof Colleen Cartwright Director, Aged Services Learning and Research Centre, Southern Cross University
Mr Peter Cleasby Clinical Nurse Consultant, Specialist Palliative Care Service Manager; President, Palliative Care New South Wales
Prof Patricia Davidson Professor of Cardiovascular and Chronic Care, Professorial Chair in Cardiovascular Nursing Research, St Vincent’s and Mater Health; Curtin Health Innovation Research Institute; Institute for Palliative and Supportive Care Research
Prof Philip Davies Professor of Health Systems and Policy, School of Population Health, University of Queensland
Mr Peter Downing Community Pharmacist, ACT
Prof Ken Hillman Professor of Intensive Care, University of New South Wales; Director, The Simpson Centre for Health Services Research, affiliated with the Australian Institute of Health Innovation acknowledgements ii Prof Jane Ingham Professor of Palliative Medicine, UNSW, Cunningham Centre for Palliative Care Prof Megan-Jane Johnstone Professor of Nursing and Associate Head of School (Research), Director, Clinical Care, Quality and Risk Management Strategic Research Centre, School of Nursing and Midwifery, Deakin University
Prof Jenny Keating Head, Department of Physiotherapy, Monash University
Dr Richard Kidd GP, Nundah Qld
Assoc Prof Sabina Knight Remote Health Practice and Remote Health Management, Centre for Remote Health
Ms Anne Matyear Primary Health Care Nurse, President Australian Practice Nurses Association
Dr Roderick McRae Department of Anaesthetics and Peri-Operative Medicine, Monash Medical Centre
Mr Nick Mersiades Senior Advisor Aged Care, Catholic Health Australia
Dr Maureen Mitchell Acting Director of Palliative Care, Territory Palliative Care
Mr Noel Muller Consumer Consultant/Representative, Consumers Health Forum of Australia
Prof Ian Olver CEO, Cancer Council Australia
Assoc Prof Deborah Parker Director, University of Queensland, Blue Care Research and Practice Development Centre
Dr Stephen Phillips GP, Maroochydore Qld
Ms Mary Reid Business Manager, Carers Australia
Dr David Stephenson Central Northern Adelaide Health Service
Dr Jane Tolman Director, Aged Services Southern Area Team, Department of Health and Human Services, Hobart, Tasmania
Abbreviations
ABS—Australian Bureau of Statistics ACFI—Aged Care Funding Instrument AIHW—Australian Institute of Health and Welfare ACSQHC—Australian Commission on Safety and Quality in Health Care CPE—continuing professional education COAG—Council of Australian Governments COPD—chronic obstructive pulmonary disease GP—general practitioner HACC—Home and Community Care MBS—Medicare Benefits Schedule MND—Motor Neurone Disease NHHRC—National Health and Hospitals Reform Commission NHMRC – National Health and Medical Research Council NHS—National Health Service NSAP—National Standards Assessment Program PCOC—Palliative Care Outcomes Collaboration PBS—Pharmaceutical Benefits Scheme
RACF—Residential aged care facilities acknowledgements TAFE—technical and further education iii Terminology
For the purposes of this Guidance document, the following terms and definitions apply:
Palliative care—Palliative care is specialist care provided on the basis of a needs assessment for all people living with, and dying from a life limiting illness and for whom the primary goal is quality of life.
End of life care—End of life care is provided to people who are living with, and who are impaired by, a life limiting illness. It is not limited by prognosis or diagnosis. End of life care includes support and services delivered by all health care professionals.
Primary care—Refers to health care in the community accessed directly by consumers and/or services provided outside of hospital. It includes care provided by general practitioners, nursing and other services such as community health services, pharmacists, Aboriginal health workers, physiotherapists, podiatrists, dental care, and other registered practitioners.
Aged care—Refers to services offered specifically for older people, including residential aged care and home/community care provided through specific packages such as Community Aged Care Packages (CACPs) and Extended Aged Care in the Home (EACH). They are normally considered a subset of primary care services.
Patient(s) and Consumer(s)—The following terms have been used in this document to describe the various ways that people engage with health services:
Consumer: is a collective term used to describe people who may require access to a health care service at some time in the future.
Patient: is used to describe individuals who are accessing palliative and end of life care.
Person: is used to describe individuals (who may or may not require or be accessing care).
Carer(s)—Is used to refer to family members, relatives or friends who provide unpaid support to consumers receiving palliative or end of life care. ‘Caregiver’ is used only when it is referred to in source documents. TE R M I NOLOG Y iv CONTENTS
Executive summary 1 Guidance domains and elements 5 Section 1: Purpose and methodology 13 Purpose 15 Developing the Guidance document 16 Section 2: Values driven reform 19 Linking end of life care values to health system reform 20 Standards for providing quality palliative care for all Australians 20 Section 3: Dying differently—understanding complexity at the end of life 23 Understanding death in Australia 24 Who dies? 24 What do people die of? 25 Where do Australians die? 26 Patient journeys at the end of life 26 Section 4: Current issues and challenges 31 Breaking taboos—talking about dying 32 Aligning understanding 33 Recognising patients who are dying 33 Recognising people who need care at the end of life 34 Engaging consumers, families and carers 36 Right care, right time and right place 37 Cultural appropriateness 38 Fragmentation across care settings 39 The need to support quality improvement 40 Appropriate workforce to meet contemporary health care needs 41 Adequate and appropriate resourcing 42 Special needs populations 43 Section 5: Care at the end of life—international directions 47 The International context—directions and models 48 Section 6: Health care reform at the end of life—national directions 53 National reform agenda in Australia 54 NHHRC reforms and end of life care 54 Primary Care Strategy and end of life care 56 ACSQHC and end of life care—focus on quality 56 Section 7: Guidance for the health care system—moving towards an integrated system for end of life care 61 Aligning guidance on palliative and end of life care with national reform processes 62 National end of life care Guidance 64 Section 8: Implementing the end of life Guidance 75 References 85
List of Tables and Figures
Table 1: Numbers of deaths in Australia 2008 (ABS Cat 3303.0) 25 Figure 1: The development of the Guidance 17 Figure 2: National end of life values and the national standards 21 Figure 3: Illness trajectories at the end of life 29
Figure 4: Aligning national reform directions to end of life care 63 CONTENTS Figure 5: National end of life Guidance framework comprising three key constructs and 11 domains 64 v Guide to using the Guidance Document
Section 1 (Purpose and methodology) provides an Section 6 (Health care reform at the end of introduction to the Guidance document and its life—national directions) sets out the national development. directions in health reform at the end of life arising from the major system-wide reform processes of the Section 2 (Values driven reform) describes the National Health and Hospitals Reform Commission, values and standards that underpin the delivery of the National Primary Health Care Strategy and the palliative and end of life care and drive the reform Australian Commission for Safety and Quality in process. Health Care. Section 3 (Dying differently—understanding Section 7 (Guidance for the health care system— complexity at the end of life) discusses the moving towards an integrating system of end of complexity of consumer experience at the end of life, life care) provides a framework for an integrating and provides information about the demographics of system of palliative and end of life care. The national death. It outlines common patient journeys at the end of life Guidance components are described and end of life as patients manage the complexities of specific guidance is provided on the necessary the health care system. system-wide preconditions and steps required to Section 4 (Current issues and challenges) achieve quality care for all Australians as they discusses current issues and challenges to providing approach the end of life. good quality care and the key messages that Section 8 (Implementing the end of life emerged from the consultations. Guidance) sets out the responsibilities for Section 5 (Care at the end of life—international implementing the Guidance. directions) discusses the international directions in reform of end of life care. gu i de to us ng T H E document vi that we develop systems that support and enable centred care for all people at the end of life requires each individualpatientandimproving person- health system reform calls for care centred around impact of any efforts at improvement. Further, broad decision making about service delivery or assess the information, it is not possible to undertake informed timely outcomes ofendlifecare. Without available about patient’s experiences and the However, currently there islittlesystematicdata step alongthepathtoachievinghigh-qualitycare. Evidenced-based policyandpracticeisanimportant area. doesn’t fall behind other developed nations in this end oflifecare sothatAustralia for priorities set policy makers and service providers will be able to By providing thebestinformedadvice,government, Australian healthandcommunitycare sectors. arrangements currently underway across the reform processes andstrategydevelopment document was seen as critical given the numerous The need for a comprehensive end of life guidance United Kingdom,CanadaandFrance. international literature from the US, Ireland, the Australia and related health literature along with national reform processes currently underway in also beeninformedbytargeted reviews ofkey The developmentoftheGuidancedocumenthas central question: the various stakeholders, structured around the that formed a continuing ‘conversation’ between a series of national consultations on end of life care Forum in March 2008. These meetings were part of September 2009 as well as a National End of Life as part of the National Palliative Care Conference in Additional input was provided from a workshop held settings (seeacknowledgements). palliative andendoflifecare across arangeofcare based group with experience and expertise in October 2009,whichbrought togetherabroad National EoL Framework Forum held in Canberra in consultations, but the main impetus was from the was informed by a variety of evidence sources and of lifecare inAustralia.ThisGuidancedocument the development of high-quality palliative and end A GuidanceDocument represents a shared visionfor Health SystemReformandCare attheEndofLife: E xe of lifeforalllooklike? that coulddeliverhigh-qualitycare attheend What would a reformed health care system c utive Summa r y
diagnosis. diagnosis. is providing care on the basis of need rather than The overarching principle of a needs-based system non-malignant diseasesisasignificant priority. care and services for patients who are dying from for people dying of cancer. Providing appropriate Australia and many other countries has mainly been The provision of specialist palliative care services in health care problems, ageinganddying. indistinct boundaries between chronic and complex difficulty lies in our lack of understanding of the right up to the moment of their death. Part of the acute care settings with many being actively treated illnesses and the majority of people now die in in medicalcare meanthat wecandomore totreat appropriately treat those who are dying. Advances inability of health professionals to recognise and Another barrier to achieving quality care is the and endoflifeservices. creates unnecessary confusion in planning palliative provision of people approaching the end of life professionals to describe the needs and service of a shared and common language used by health home and stopping futile treatments. Also the lack discussion aboutimportantissuessuchasdyingat societal reluctance to talk about death, which limits professional awareness ofendlifeissuesanda For example, there is limited community and communities, healthprofessionals andcare systems. levels from the individual patient level to Challenges to achieving this at present exist at all dignified, peacefuland respectful death. systems of care might better enable a more reforms present anopportunitytoreview how adequate. The proposed national health care their life to ensure that care is both appropriate and experience of people as they approach the end of that more needs to be done to improve the mainly acute illness and there is an understanding is designedtoprovide short-term,episodiccare for comparatively lower profile. The health care system patients, endoflifecare withinAustraliahashada been shown to improve the experience and care of mainstream health service in the mid 1980s and has While palliativecare begantoberecognised asa better prepare fortheirjourneyattheendoflife. professionals, patients, their families and carers to common illness trajectories may help health experience ofpatientsandunderstandingthe Grounding the development of these systems in the high-quality, safecare ofindividualpatients.
1 Executive Summary 2 Executive Summary change. change. assist in timely review as a patient’s circumstances including the consistent use of referral ‘triggers’ to able tobeaccessedatanytime inthe24/7cycle, time in the right place. It is essential that services are able toseetherighthealthprofessional attheright rural and remote regions. Accessibility means being distribution of health professionals, particularly in palliative andendoflifeservicesisthepoor A majorchallengetotheequitableaccess accommodate theirspiritualandculturalneeds. Aboriginal and Torres Strait Islander Australians to focused approach toend of lifecare isneededfor general. Forexampleaculture-centred, person- care planning, truth telling and communication in decision making concerning autonomy, advance profound cross cultural differences in end of life populations. The evidence suggests that there are patients as well as sensitivity to culturally diverse such as access to services for rural and remote to beflexibleand responsive tolocalcircumstances, Each community is unique and models of care need planning. professionals is the process of advance care communications between all consumers and health An emerging approach in developing effective outcomes ofvarioustreatment modalities. understanding oftheirrealistic optionsandlikely are given an informed choice based on an important that patients and their families and carers between services and health care professionals. It is at the interfaces between these settings as well as cases ofendlifecare relate tobarriersthatoccur problems associated with the provision of complex homes and home care. However many of the wards, emergency departments, hospices, nursing essential in all types of care settings including acute The delivery of care to people who are dying is practitioners. settings and at the primary care level with general to gain increasing awareness in both residential care benefit from specialist palliative care services needs setting. Theimportanceofrecognising who may palliative care specialists regardless of the clinical person’s needs, the more appropriate it is to involve recognise thatthehigherandmore complexa palliative and end of life care. It is important to diagnosis, whichpresents problems forplanning difficult to predict the prognosis at the time of its Similarly, forpeoplewithMotorNeurone Diseaseitis considerations thataccompanydementia. social for example the complex cognitive, emotional and Special needsgroups present particularchallenges; improvement. on information, evidence and continuous approaches; and improving safety and quality based is apriority, particularlyinvolvingmultidisciplinary capacity andcompetencein primaryhealthcare management ofchronic conditions; building continuity ofcare iscritical, particularlyin integrated wayacross sectoral boundaries; services; servicesshouldbedelivered inan the mostappropriate setting toreceive those need tobematchedpeople’s needs,including from thesereform processes including:services Health Care (ACSQHC). Common themesemerge Australian Commission on Safety and Quality in National Primary Health Care Strategy; and the reform processes establishedthrough the:NHHRC; are well grounded in the three sets of parallel The recommendations inthisGuidancedocument Guidance documentcanbetestedandjudged. benchmark against which the reforms included in this care forallAustralians(4thEdition)beusedasthe underpin theStandards for providing quality palliative agendas maynot.Itisproposed thatthevalues create shared aspirations in a way that political the designofhealthcare systemsbuttheyallowusto the process ofreform. Values are difficulttoembedin dignity and autonomy—should also be at the core of value asessentialfora‘gooddeath’—suchrespect, the goal of a ‘good death’ for all Australians. What we responsibility for reform is fundamental to achieving need to be undertaken by all of those who share the Aligning andclearlycommunicatingtheactions that the professional level. of continuous learning from the undergraduate to support and empowerment to take on the challenge Building the capacity of the workforce will require palliative andendoflifecare competencies. agreed competencies that will in the future include the education of health professionals that includes (NHHRC) hasrecommended anewframeworkfor National Health and Hospitals Reform Commission are often an inherent barrier to teamwork. The resistance andpoorinterpersonalrelationships that for health care workers in areas such as professional dynamics require additional training and education based and shared care models. These changing skill mix of health professionals caused by new team A number of workforce changes are occurring to the
to ensure closealignmentwithitsbroad directions. ACSQHC’s National Safety and Quality Framework page 6), which has been adapted from the End of Life Guidance Framework (see the figure on This advice is organised in the following National quality andservicedevelopmentactivities. development aswelltherefocusing ofcurrent guidance on strategic and operational service geographical location. It provides practical of theirdiagnosis,prognosis, settingofcare or for all people approaching the end of life regardless longer term priorities that will result in better care forward to establish strategic short, medium and and serviceproviders withadviceandapathway federal, state and territory—policy makers, planners Guidance documentistoprovide governments— massive scope of the endeavour. The aim of this from the plethora of reform recommendations and providers or policy makers to discern the first steps of reform, it can be difficult for individual service As the health care system begins a complex process researchers andpolicymakers. students, healthprofessionals, managers, care attheendoflifeamongconsumers,carers, promote a‘continuingconversation’onhigh-quality It is intended that the Guidance document will A HealthierFuture forallAustralians(2009). Primary HealthCare ReforminAustralia (2009) and national quality and reform documents including agenda andneedtobeusedalongsideother that have emerged out of the national reform system-wide reform in the context of the directions guidance elementsarticulatethepreconditions for settings who are approaching the end of life. The deliver high-quality care to people in all health care action to improve the health care system’s ability to guidance elements. It has been designed to guide and safety’), 11 guidance domains and 61 specific ‘driven byinformation’and‘organised forquality priorities orconstructs(‘patientandcarer focused’, The Guidance takes the form of three overarching
3 Executive Summary 4 Executive Summary AND ELEMENTS G UIDAN C E
DOMAIN S
5 Executive Summary The national end of life guidance framework
Organised Person and Driven by for quality carer focused information and safety
Patients empowered to Informed and make fully empowered Seamless, informed community well-coordinated decisions care
Data collected and used to Needs-based care support quality improvement Flexible, optimised and effective workforce
Involved and Knowledge-led supported carers continuous improvement
Supported Appropriately Culturally research, resourced competent, safe knowledge and appropriate translation and exchange GU I DANCE doma i ns and elements 6 Guidance Domain 1: Patients empowered to make fully informed decisions
Specific guidance elements:
1.1 Develop and implement policies, procedures and tools to support consumer and carer involvement in end of life care planning commencing from the early stages of a life limiting illness. 1.2 Develop and implement a national approach to the implementation of advance care planning across the health and aged care systems. 1.3 Develop a nationally led, systematic process to develop and disseminate evidence-based, consumer-friendly education and information to support people to make decisions about the location and type care and resources they need as they approach the end of their life.
Guidance Domain 2: Needs-based care
Specific guidance elements:
2.1 Develop a national systematic approach to the development of criteria for the recognition of people approaching the end of life.
2.2 Introduce standardised, validated assessment tools to determine patient i s ‘Pe rs on and c a r e fo u ed’ Ca r e t h at and carer needs at the end of life. 2.3 Develop and implement streamlined, consistent holistic assessment of end of life needs across primary, aged care and specialist services. 2.4 Develop disease cluster referral triggers that align consumer need and the common trajectories of people approaching the end of life. 2.5 Develop and implement a standardised, systematic approach to the implementation of end of life care pathways for acute care, community and aged care settings. GU I DANCE doma i ns and elements 7 Guidance Domain 3: Involved and supported carers
Specific guidance elements
3.1 Support the vital role of carers through the development and dissemination of educational programs, information and access to timely advice regarding end of life care. 3.2 Provide access to residential and flexible at home respite care arrangements to assist carers sustain their role in caring for someone approaching the end of life. 3.3 Develop and implement appropriate tools to routinely assess and support the health of carers. 3.4 Ensure that carers are engaged in care decisions and communications to the extent they wish to be and subject to the consent of the patient. 3.5 Directly consult with carers in the processes of policy and services development and evaluation to ensure that their specific needs and experiences related to end of life care are adequately and accurately reflected and acknowledged. 3.6 Ensure that carers are provided with resources to enable them to undertake their role providing care to someone approaching the end of life. 3.7 Provide access to bereavement support for all carers and families. at i s ‘Pe rs on and c a r e fo u ed’ Ca r e t h at
Guidance Domain 4: Culturally competent, safe and appropriate
Specific guidance elements
4.1 Ensure that cultural and spiritual competence and safety related to end of life care is incorporated into multidisciplinary education programs at all levels. 4.2 Ensure that policies, procedures and processes of care respect and reflect different cultural and ethnic values, beliefs and practices that surround death, dying and end of life care. 4.3 Support the development and provision of culturally appropriate health information and resources in a range of community languages and access to trained interpreters. 4.4 Build relationships between Indigenous and non-Indigenous health care providers that facilitate understanding of cultural differences and care needs at the end of life for Aboriginal and Torres Strait Islander people. 4.5 Ensure there are policies, procedures and mechanisms to support ‘return to country’ for Indigenous Australians who are approaching the end of their life. 4.6 Support the strengthening of the role of Indigenous health workers to connect health professionals and services with local communities to support improved end of life care. GU I DANCE doma i ns and elements 8 Guidance Domain 5: Informed and empowered community
Specific guidance elements:
5.1 Strengthen consumer participation and voice in: a) end of life policy and service development; b) community capacity building initiatives; and c) quality review. 5.2 Develop a national awareness raising strategy that guides and integrates community awareness, consumer health literacy and community capacity building initiatives in end of life care. 5.3 Promote open discussion of death and dying through health and legal professional, education and awareness programs.
Guidance Domain 6: Data collected and used to support quality improvement
Specific guidance elements: i s ‘ Dr iven b y info r mation’ Ca r e t h at
6.1 Inventory the data needs related to end of life care of the different stakeholders—government (Commonwealth and state/territory), clinical services (specialist, primary and aged care), funders, clinicians and the wider community. 6.2 Collect and use routine data on patient and service level activity and outcomes to support improvement and monitor performance in end of life care. 6.3 Ensure that data on safety and quality of care at the end of life is collated, compared and provided back to clinical services and clinicians in a timely fashion to expedite quality and quality improvement cycles. 6.4 Develop and support the use of nationally standardised measurement tools. 6.5 Enable end of life data linkages between various data collections and repositories held at clinical, national and jurisdictional level. GU I DANCE doma i ns and elements 9 Guidance Domain 7: Knowledge-led continuous improvement
Specific guidance elements:
7.1 Implement, monitor and report on performance against national standards for end of life care across all care settings (specialist palliative care, primary and community care, aged care and acute care). 7.2 Report on strategies to improve safety and quality of care at the end of life and the actions taken in response to identified quality and safety issues. 7.3 Develop and implement strategies that support the translation and diffusion of evidence and knowledge in relation to the needs and effective care of people approaching the end of life. 7.4 Reduce unjustified variation in practice by disseminating evidence and implementing best practice clinical guidelines for palliative and end of life care.
Guidance Domain 8: Supported research, knowledge translation and exchange at i s ‘ Dr iven b y info r mation’ Ca r e t h at Specific guidance elements:
8.1 Adopt a national approach to the synthesis and dissemination of clinical evidence/knowledge and research related to end of life to expedite its translation into practice. 8.2 Prioritise and invest in clinical and health service research in palliative and end of life care. 8.3 Provide dedicated resources for the regular dissemination of research outcomes related to end of life to health services and clinicians. 8.4 Develop a national approach to the collection and reporting of patient and family reported outcomes related to end of life. 8.5 Enhance the spread of innovation in palliative and end of life care by supporting health service and health professional participation in breakthrough collaboratives, clinical forums, health roundtables etc. 8.6 Invest in the development of knowledge transfer methodologies between researchers, health care professionals and policy makers. GU I DANCE doma i ns and elements 10 Guidance Domain 9: Seamless, well-coordinated care
Specific guidance elements:
9.1 Build the capacity and competence of integrated primary and community care services to provide end of life care and support to people approaching the end of their life. 9.2 Develop strong partnerships and networks between primary care providers, aged care services, disease specific organisations and services, and specialist palliative care services to support needs-based service delivery for people approaching the end of life. 9.3 Ensure 24/7 access to primary care and specialist palliative care services for patients who are approaching the end of their life. 9.4 Network specialist palliative care services within defined regions and in accordance with role and capability frameworks. 9.5 Expand specialist palliative care outreach services to support the care of people dying at home and in residential aged care facilities. 9.6 Utilise emerging technologies (eg. telehealth networks) to enhance communication and support for clinicians, patients and families in rural and remote areas. 9.7 Establish referral and advice networks between primary care, aged care and specialist palliative services. 9.8 Implement strategies, including the nomination of a case coordinator for the coordination of care for all patients with complex needs at the end of life to assist with navigation, transition and utilisation of services.
9.9 Ensure the availability of affordable medication and equipment in appropriate i s ‘ Org ani ed fo r S AFE ty and Q UALI ty’ Ca r e t h at care settings where needed to provide care at the end of life, and ensure that staff are credentialed in their use. GU I DANCE doma i ns and elements 11 Guidance Domain 10: Flexible, optimised and effective workforce
Specific guidance elements:
10.1 Collect and report standardised national data on the size, skill mix and demographics of the specialist palliative care workforce. 10.2 Ensure all primary care and aged care providers have staff trained in advance care planning. 10.3 Ensure that all health care professionals whose role interfaces with end of life care have the knowledge and skills to provide care to people who are approaching the end of their life. 10.4 Include cross-cultural considerations in death and dying in all undergraduate and specialist palliative care curricula. 10.5 Incorporate specific content related to end of life care and needs of ethnic minority and other marginalised groups and Aboriginal and Torres Strait Islander populations, in all undergraduate and specialist palliative care curricula. 10.6 Develop and disseminate a nationally consistent set of core competencies for palliative and end of life care to underpin continuing professional education. 10.7 Collaborate with Health Workforce Australia to facilitate optimal development and distribution of specialist palliative care and skilled primary care and aged care workforces. 10.8 Develop national standards for recruitment, training, supervision and support of volunteers providing care at the end of life. at i s ‘ Org ani ed fo r S AFE ty and Q UALI ty’ Ca r e t h at Guidance Domain 11: Adequately resourced
Specific guidance elements:
11.1 Adopt flexible funding arrangements to enable rural and remote communities to access end of life care resources and services to meet their needs. 11.2 Develop resourcing formulas that incorporate assessment of local population end of life care needs, cost of service delivery and that support the achievement of desired outcomes. 11.3 Ensure public and private funding that is directly linked to care of people who are approaching the end of their life irrespective of the settings of care. 11.4 Ensure affordable access to equipment and medications necessary to provide care at the end of life in the community. 11.5 Ensure that residential aged care facilities are accurately and adequately resourced to reflect the cost of delivery of end of life care to residents, and support for families and carers. GU I DANCE doma i ns and elements 12 purpose andmethodology section 1
13 purpose and methodology 14 purpose and methodology 8 7 6 5 4 3 2 1 designed to meet the needs of these patients, who years, orevendecades.Thehealthsystemispoorly illnesses where theirneed forcare mayspanmany Also people are increasingly dying from chronic rather inthecommunityandacutecare hospitals. hospice orinthecare ofpalliativecare services,but illness thatwillendindeathisnotspenteithera For most people, the time they spend living with an quality care astheyapproach theendoftheirlife. all Australianshaveaccesstoneeds-basedhigh- quality of care, there is still much to be done before While these efforts have enhanced accessibility and Mary inthelastdecadesofnineteenthcentury. by the Sisters of Charity and the Little Company of history in Australia with the first services provided Hospices and the care of the dying have a long It isameasure ofoursociety asawholeanditislitmustestforhealthsocialservices. How wecare forthedying isanindicatorofhowwecare forallsickandvulnerablepeople. S outcomes forpatients,theircarers andfamily. been shown to improve the experience and of their life. Access to palliative care services has experience and care of people approaching the end Palliative care has achieved much in improving the mainstream healthserviceinthemid1980s. palliative care begantoberecognised asa the hospicesandearlierpalliativecare pioneers, Building onthestrong foundationestablishedby approaching theendoflife. primary care services to provide care for people significant investment in building the capacity of and Territories. More recently there has been level of access to palliative care services in all States and territory governments has now ensured some Ongoing investment by Commonwealth and state
E Australian GovernmentNationalHealthandHospitals ReformCommission2009,AHealthierFuture forallAustralians—FinalReport,June2009. Vital Signs:StoriesfromHillman, K2009,Vital intensivecare, UniversityofNewSouthWales Press, Sydney. treatment.’ JAMA.vol.272(23),pp.1839–44. Covinksy, KE et al. 1994, ‘The impact of serious illnessReport 35:No.6,pp.S14–S18. on patients’ families. SUPPORT Investigators.Lynn, J2005, Livinglonginfragilehealth:Thenewdemographics shapeendoflifecare. In Improving endoflifecare: Whyhasitbeensodifficult?, Hastings Study Centre to understandReport, Special prognoses and preferences2009) for outcomes and risks of Australian Government Department of Health and Ageing website:Currow, DCetal. 2008,‘Comfortinthelast2weeksoflife:relationship toaccessingpalliativecare services’,SupportCancerCare, vol.16(11),pp.1255–63. http://www.health.gov.au/internet/main/publishing.nsf/Content/palliativecare-program.htmLewis, MJ2007,MedicineandCarehistory, oftheDying.Amodern Oxford University Press. New York. (accessedDepartment ofHealthNHS2008,EndLifeCare Strategy:Promoting highqualitycare foralladultsattheendoflife.ExecutiveSummary,London. 12 May C TION 1—Pu 4 rp o s e and met 3
End ofLifeStrategy, DepartmentofHealthNHS(2008)
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approaching the end of their life. While the responsibility for the care of people who are thrown a spotlight on the health and social system’s people astheyapproach theendoftheirlife. needs to be done to improve the experience of There is an emerging understanding that more Hospitals ReformCommission(NHHRC) The recent work of the National Health and are dying. questions about how we care for people who reform, it is timely to address the fundamental As the Australian health care system undertakes their families. is notwhattheywouldwantforthemselvesor recognise that the care they provide in some cases professionals working in these systems and who It can also create significant moral distress for health of care thatiseitherinappropriate orinadequate. patients whoare dyingthiscanresult inthedelivery increasing survivalandreducing mortality. For are focusedonproviding treatment andcure— episodic care of acute illness. Acute care systems and cure diseaseandtoprovide short-term, The healthsysteminthemainisdesignedtotreat policy andserviceshashadarelatively lowprofile. End of life care within Australian health and social (RACFs) andathome,manydonot. hospitals, hospices, residential aged care facilities wished and/or experience excellent care in While some people do die as they might have and ineffective care. either fall through the gaps or receive inappropriate h odolo 7 g 5 y 8 , has 1
6
meet these demands. All people with a life-limiting organised and resourced to ensure that they can Specialist palliative care services need to be • • • continue toberequired to: care services and practitioners are required and will dying. of the process of reform of care for those who are respect, autonomy, dignity—should be at the core collectively valueasessentialforagooddeath— political agendas may not. Those things that we shared aspirations in a way that pragmatic and and sectoral boundaries and create common and providing care. But they allow us to cross political operationalise in the practical day-to-day work of design of health care systems and hard to They can be hard to systematically embed in the Values canbesubtle,multi-facetedandcomplex. 12 11 10 9 hold tobeessentialcomponentsofa‘gooddeath’. and driven by values that define what it is that we Reform in the area of end of life care can be shaped a dignified,peacefuland respectful death. reconsider how systems of care might better enable they present an opportunity to review and access—facing thehospitalandacutecare system, to thechallenges—botheconomicanddemandfor proposed reforms could be seen to be responses coordinated andresourced. who havearole toplaymustberecognised, the unique and complementary contribution of all people approaching theendoftheirlifemeansthat Working together to meet the need for care of and judged. against which the proposed reforms can be tested for allAustralians(4thEdition) underpin theStandards for providing palliative care This Guidancedocumentproposes thevaluesthat Palliative Care Australia2005,Aguidetopalliativecare servicedevelopment:Apopulationbasedapproach, Canberra. Palliative Care Australia2005,Standards forproviding palliativecare forallAustralians(4thEdition),Canberra. American_Values.pdf. (accessedFeb 2010). Murray, TH2009,ConnectingAmericanValues withHealth,HastingsCentre Reform http://www.thehastingscenter.org/uploadFiles/Publications/Primers/Connecting_ Smith, RA2000,‘Agooddeath’.BMJ,vol320, pp.129–130. care. dissemination of knowledge that will improve contribute to the ongoing development and providing end of life care; and provide education and support to others problems; meet the needs of people with complex 10
12 Specialist palliative 11 as the benchmark
9
• documents to: providers alongside the national quality and reform be used by policy makers, planners and service life in all health care settings. This Guidance should high-quality care to people approaching the end of improve thehealthsystem’s abilitytodeliver It has been designed to guide practical action to specific objectiveofimproving endoflifecare. general reform directions and applies them to the approaching the end of life. It draws together the accountable for the care of people who are forward for those who are concerned and set outinthisdocumentproposes apathway individuals who can make it a reality. The Guidance endeavour canbeoverwhelmingforthevery recommendations and the massive scope of the the essential first steps. The sheer volume of reform for individual services or policy makers to discern overdue reform andreorganisation itcanbedifficult As the wider health care system begins a process of Purpose the goalofa‘gooddeath’forallAustralians. aspirations for reform is fundamental to achieving those who share this responsibility and share actions that will need to be undertaken by all of employers. Aligning and clearly communicating the health and social care systems, educators and responsibility. Itfallsonindividuals,communities, approach the end of their life is a broad social Providing care andsupportingpeopleasthey and formalised. and specialist palliative care services are established resourced and that networks between their services to ensure that they are adequately prepared and of people at the end of life should be supported primary care services play in meeting the needs fundamental role that acute care, aged care and knowledge and skills in end of life care. The to health services and professionals that have illness require as an absolute minimum access and priorities; service development and improvement plans form the basis for strategic and operational
15 purpose and methodology 16 purpose and methodology and propose anagendaforongoingimprovement. necessary to achieve best practice in end of life care preconditions for system-wide reform that are The various Guidance elements articulate the • • 14 13 project. PCC4U undergraduate palliative care curriculum also as part of the consultations undertaken for the a national consultation on the standards in 2004 and for more than a decade. They were reconfirmed in communities andhealthprofessionals inAustralia end oflifethathavebeenheldbypatients, represented the aspirations for quality care at the the Guidance elements. These values have standards were used to guide the development of The embedded values of the national palliative care sources (Figure 1). informed by a range of information and evidence The development of the Guidance has been Developing theGuidancedocument health care settings,includingagedcare, primarycare, acutecare andspecialistpalliativecare. people, those with chronic and complex care needs and those in acute care settings. Participants workshopped strategiesProf PatriciaDavidsonandothersoutlinedthechallengesofdelivering high-qualitycare toallpatients astheyapproached theendoftheirlife,particularlytoolder that would improve care across a range of The NationalEndofLifeForumwasheldinCanberra inMarch 2008and wasattendedbyover100participants.Theinvitedspeakers,DrJoanneLynn, Prof MichaelAshby, CPCRE 2005,Principlesforincludingpalliativecare inundergraduatecurriculum , TheNationalPalliativeCare Program. managers, researchers andpolicymakers. promote discussionwithconsumers,clinicians, and reviewing investmentsinhealthservicesdelivery; quality and service development activities and provide amechanismforrefocusing current 13
End ofLifeForuminMarch 2008. Conference in September 2009 as well as a National workshop held as part of the National Palliative Care Additional inputhasbeenprovided from a imprimatur todevelopthisGuidancedocument. This National Forum has provided the impetus and and March 2010(NationalEoLFrameworkForum). in palliative and end of life care in October 2009 broad-based group with experience and expertise The principalconsultationwasundertakenwitha broadly structured around thecentralquestion: Guidance elements. These consultations were reviewed and used to shape and develop the national consultations on end of life care was In addition, feedback received from a series of the Guidancedocument. related literature were also reviewed in preparing International end of life reform documents and literature onhealthandendoflifereform issues. currently underway in Australia, along with related the major national reform processes that are by The Guidancehasbeensignificantlyinfluenced Guidance. that were usedtoinformthedevelopment of the Figure 1 (opposite) shows the process and sources of lifeforalllooklike? that coulddeliverhigh-qualitycare attheend What would a reformed health care system
14
Figure 1:ThedevelopmentoftheGuidance State/Regional/Local State/Regional/Local Matter ofLifeandDeathWorkshop EoL StakeholderConsultations service delivery frameworks Sector consultations National Conference National EoLForum Quality care attheendoflifeforallAustralians NATIONAL STANDA RDS P ALLIATIVE AND END OFLIFE GUIDANCE VALUES VISION
Safety andQualityinHealthCare
National Health and Hospitals National HealthandHospitals National reformprocesses Australian Commission on Australian Commissionon Health Care Strategy Reform Commission National Primary life reform processes International end of International endof Literature review and trends
17 purpose and methodology 18 purpose and methodology values drivenefom section 2
19 values driven reform 20 values driven reform • • provided byhealthcare workerswho: We believe that quality care at the end of life is for thereform journeyand itsoutcomes. responsibilities that can act as a reference standard a roadmap for quality care—a set of rights and approaching theend of life. Together they provide matters most in the delivery of care to people families and health care practitioners believe 18 17 16 15 have beenendorsedbyconsumers end of life. They were initially described in 1999 and are essential components of high-quality care at the In Australiawehaveclearlydefinedthevaluesthat and professionals builtaround shared values. a partnership between patients, carers, communities imperative that can be shared by all. Care becomes crosses sectoral boundaries and creates an reform process allowsustocreate alanguagethat achieve those goals. Embedding our values in the the direction and nature of the reforms necessary to competent, weare compelledtothinkbroadly about and to provide care that is both compassionate and autonomy, torespect theirchoicesandpreferences, to preserve and protect the person’s dignity and recognised that the goal of care at the end of life is those approaching the end of life. When it is focused on what matters most about the care of and acute care sector, there is a need to remain ongoing funding and sustainability of the hospital reform, primarily driven by concerns about the In the midst of a process of widespread and rapid system reform L Understanding whatisatstakeinapublicpolicydebateasvitalitcanbeelusive. SECTION 2:V professionals. inking end of life care values to health Palliative Care Australia2005,Standards forproviding qualitypalliativecare forallAustralians(4thEdition),op.cit. CPCRE 2005,op.cit. Palliative Care Australia1999,PalliativeCare Standards (3rd Edition),Canberra. Murray, TH2009,op.cit. them inmanagingtheirownsituation; patient, theircaregiver and familytoempower work within the strengths and limitations of the their caregiver andfamily; endeavour to maintain the 17 These values set out what patients, Thesevaluessetoutwhatpatients, alues drivenefom dignity of the patient, 16 and health
Thomas H.MurrayPhD,President, HastingsCentre • • • to whichthesevaluesare upheld. reform process couldbemeasured bytheextent the health care system. Indeed, the success of the accountability—should underpin the reform of equity, respect, advocacy, excellence and These values—dignity, empowerment,compassion, • • • provided topatientsand their familiesandcarers. communicating and monitoring the quality of care a practicalandaccessiblemechanismfor of palliative and end of life services. They provide states andterritoriestoguidethedevelopment The national standards have been adopted by all of life(Figure 2). in the delivery of care to those approaching the end and setoutthereasonable expectationsofquality based on the foundation values described above The national palliative care standards have been care forallAustralians Standards for providing quality palliative consider caregivers andfamily; act with demonstrate and intheallocationofresources; families andcommunities. are in theprovision ofcare andsupport; are committedtothepursuitof patients, caregivers, familiesandcommunities; advocate caregivers andfamily; accountable topatients,caregivers, compassion towards thepatient,their equity intheaccessibilityofservices on behalf of the expressed wishes of respect forthepatient,their 18 excellence
15 address thoseneedsinlinewiththeirwishes. planning processes and strategies are developed to family are acknowledged in the assessment and care The holistic needs of the patient, their caregivers and Standard 2 care planning. are acknowledged and guide decision making and their caregivers and their family’s needs and wishes patient, theircaregivers and family. Thepatient, based on a respect for the uniqueness of the Care, decision making and care planning are each Standard 1 (4th Edition)asfollows: providing qualitypalliative care forallAustralians There are 13nationalstandards intheStandards for Figure 2:Nationalendoflifevaluesandthenationalstandards and evidence improvement Commitment Commitment Standard 11: to quality to quality Standard 10: Equitable Equitable access Standard 12: workforce Skilled Skilled
Standard 9: community community Building Building capacity
Standard 13: Care forthe
caregivers
Formalise access Formalise access to bereavement Standard 8: Empowerment Accountability
Compassion care Excellence Advocacy Respect involving patient involving patient Dignity Equity Individualised Individualised care planning
Standard 1:
and family
their comfortmaximisedand theirdignitypreserved. The uniqueneedsofdyingpatients are considered, Standard 6 their needsandwishes. support and guidance about their role according to The primarycaregiver isprovided withinformation, Standard 5 patient, theircaregivers and family. Care is coordinated to minimise the burden to the Standard 4 wishes ofthepatient,theircaregivers andfamily. planning are undertaken to meet the needs and Ongoing and comprehensive assessment and care Standard 3 Values driven Standard 7:
service Holistic care Standard 2:
patient’s wishes Standard 6: Respect for Respect for
Impeccable Impeccable assessment Standard 3:
Standard 5: for carers Support Support Coordinated Standard 4:
care
21 values driven reform 22 values driven reform diagnosis, age,culturalbackground orgeography. based on clinical need and is independent of Access to palliative care is available for all people Standard 10 collaboration andpartnerships. caregivers and family is built through effective people whohavealifelimitingillness,their Community capacity to respond to the needs of Standard 9 services. bereavement care, informationandsupport patient, their caregivers and family have access to Formal mechanisms are in place to ensure that the Standard 8 of competentandcompassionatepalliativecare. culture, structure and environment for the provision The servicehasanappropriate philosophy, values, Standard 7 and maintaineffective selfcare strategies. Staff and volunteers reflect on practice and initiate Standard 13 development. ongoing participation in continuing professional for the level of service offered and demonstrate Staff and volunteers are appropriately qualified Standard 12 and research inclinicalandmanagementpractices. The serviceiscommittedtoqualityimprovement Standard 11
at theendoflife understandin g complexity Dying differently section 3
23 y—understanding complexity at the end of life Dying differentl
24 Dying differently—understanding complexity at the end of life the outlinesprojections forthenext20–30years. Australia in the first decade of the new millenniumThis sectionexplores thenature ofdeathanddying in and availability ofcarers. elderly people in the community exceeds the grows in absolute terms, and as the proportion of increase asthenumberofpeopledyingeachyear suggest thatthetrend towards institutionalcare will Projections of the demand for care at the end of life have familyorcommunitysupportsavailabletothem. stages of advanced chronic illness and be less likely to to be elderly, to die as a consequence of the end conditions suchascancerorheartdisease. followed aperiodofchronic illnesscausedby of these deaths could have been anticipatedasthey 28 27 26 25 24 23 22 21 20 19 with thenumberofdeathsregistered in2006. represented an increase of 4.4 per cent compared half (73 Of the143 946deathsinAustralia2008justover Number ofdeaths Australia. In 2008there were 143 946deathsregistered in Understanding deathinAustralia complexity at theendoflife Section 3:Dyingdifferently—understanding Who dies? or otherinstitutionalsetting. Nowadays people are most likely to die in a hospital either duringchildhoodorearlyadulthood. infection or injury. Many people died at a young age suddenly followingashort,acuteillness—commonly friends and community. They were more likely to die died athome,cared forandsupportedbyfamily, the endoflife.Onehundred yearsagopeopleusually change inhowpeopleapproach andare cared forat the past 100 years. There has also been a remarkable death and place of death have changed radically in The patterns of death in relation to age, cause of ABS andAIHW2005,TheHealthWelfare ofAustralia’s AboriginalandTorres StraitIslanderPeoples. Palliative Care OutcomesCollaborative2009,NationalReportonPalliativeCare inAustralia—January–June2009 . ibid. ibid. ibid. ABS 2009,op.cit. Tabor, Betal.2007,PlaceofDeathpeoplewithcancerinNSW . CancerInstituteNSW. Foreman, LMetal.2006,‘Factorspredicative ofpreferred placeofdeathinthegeneralpopulationSouthAustralia’.PalliativeMedicine,vol.20,pp.447–53. Palliative Care Australia2008,http://www.palliativecare.org.au/Portals/46/PCA%20submission%20to%20NHHRC.pdf (accessed12May2010) ABS 2009:2008DeathsAustralia,CatNo.3302.0.
548) were male and 70 19 It is estimated that almost three quarters 21, 22
Theyare more likely 398 were female. This 20
23
77.9 yearsformalesand83.9females. of all deaths (51%). The median age at death was all deaths, and those aged over 80 for just over half Decedents aged over 65 account for 79 per cent of Age 320 000 registered deathsperannum. 2056 thedeathrateswillmore thandoubletoover remainder ofthecentury. projected to continue to increase through the ageing of the population the number of deaths is in the number of older people. With the continued population, and in particular a proportional increase time reflects an increase in the overall size of the The steadyincrease inthenumberofdeathsover under-reporting ofIndigenousstatus. origins (Indigenous). It is believed that there is being of Aboriginal, Torres Strait Islander or both 2008 where the deceased person was identified as There were 2500 deaths registered in Australia in Aboriginal andT overseas. specialist palliative care services were born almost onethird (32.1%)ofpatientsseenby Outcomes Collaborative(PCOC)suggeststhat Recent data published by the Palliative Care of 33.2years). the Australian-bornpopulation(withamedianage median age of 45.7 years in 2008) compared with structure oftheoverseas-bornpopulation(witha resident population. This is due to the older age deaths), despite making up only 26 per cent of the for 30 per cent of deaths registered in 2008 (43 Australia’s overseas born population accounted Culturally andLinguisticallyDiverse illnesses. people, younger people also experience life limiting While themajorityofdeathsoccurred inolder
27 orres StraitIslanders 24 Itisprojected thatby
28 25
26 100
Indigenous healthcare providers mayhavefewer in thecourseofillness.Theservicesoffered by such as cancers often come to medical attention late health services. This means that major conditions except where there are well established Indigenous less likely to use health care facilities of all types 33 32 31 30 29 Australians forthisgroup. expectancy 19yearslessthannon-Indigenous non-Indigenous Australiansleadingtoalife aged 25–45, death rates are 5–8 times those of the highest in the world. For Indigenous Australians Death rates for Indigenous Australians are among • • • • females were: Australians, Indigenous rates for both males and Compared with death rates for non-Indigenous to thoseofAustraliansoverallacenturyago. These Indigenouslifeexpectanciesare similar males in 1998–2000 and82.0forallfemales. females. This is compared with 76.6 years for all was 59.4yearsin1996–2001and64.8for Australians. Life expectancy for Indigenous males average 17yearslessthanfornon-Indigenous Life expectancy for Indigenous Australians is on T able 1:NumbersofdeathsinAustralia2008(BSCat3303.0) ABS 2010,op.cit. vol. 22,pp.136–9. Tsasis, P2009,‘Chronic diseasemanagementand thehome-care alternative inOntarioCanada’.HealthServicesManagementResearch; ABS 2010.2008CausesofDeath.CatNo.3303.0. Vos, Tet al.2005, Australianburden ofdiseaseandinjurystudy:projected healthcare costsreport, UniversityofQueenslandandAIHW, Brisbane. Hayman, N2003,‘Indigenoushealthtoday’.RACPNews , vol.22,pp.5–6. higher inallotheragegroups. five timesashighforthoseaged35–54 three timesashighforinfants almost three timesashighoverall AUST State NSW QLD ACT TAS WA VIC NT SA 143 946 deaths 12 752 12 616 27 335 35 497 48 782 o of No of 4219 1 697 1 041 29 Indigenous people are age (M) edian Median 77.9 78.1 61.5 78.1 76.3 79.0 77.0 78.5 78.3
edian Median age (F) 83.9 83.0 61.5 83.3 83.7 84.5 83.4 84.2 84.0 of what palliative care can offer. links with mainstream services and be less aware or more chronic illnessesbytheageof65. At least 70 per cent of people will be living with one 14 per cent by 2021 and by 51 per cent for cancers. 14 percentby2021and51forcancers. cardiovascular diseaseisprojected toincrease by heart andcirculatory system. In 2008 the major cause of death was diseases of the expected toincrease to80percentby2020. cent of Australia’s overall disease burden. This is Today chronic illnessmakesupmore than70per of oldage. heart, respiratory and renal disease and the diseases that wascharacterisedbychronic illnesses—cancer, the 21st century the pattern had changed to one were infection and injury. At the commencement of In the early 20th century the major causes of death The patternofthecausesdeathisalsochanging. What dopeopledieof? to deathwere reported foreachpersonregistered. problems. In 2008 a mean of 3.2 causes contributing faced with multiple, chronic and complex medical As people approach the end of their life they are ndigenous No. Indigenous deaths 2 472 467 605 141 562 559 16 24 97 33 ndigenous deaths as Indigenous deathsas The incidence of
% ofalldeaths 32 30
44.86 1.72 0.94 0.57 4.74 1.12 2.06 0.27 1.15
31
25 Dying differently—understanding complexity at the end of life 26 Dying differently—understanding complexity at the end of life 45 44 43 42 41 40 39 38 37 36 35 34 Most peoplewillsaythattheywanttodieathome. Where doAustraliansdie? In 2008thefourleadingcausesofdeathwere eventually dieinaninstitutionalsetting. However, the reality is that most people will • • • • • males andfemalesrespectively were: Australians, the causes of death for Indigenous Compared with causes of death for non-Indigenous • • • • at home. in public hospitals and less than 20 per cent died found that nearly two-thirds of cancer patients died reached similarconclusions.A2007NSWstudy A number of studies about place of death have home willchangeastheirillnessprogresses. individual, andforsometheirdesire toremain at factors influence the actual place of death for an Lynn, J2005, op.cit. Sheenan, DandSchirm,V2003,‘End-of-lifecareof Nursing, vol.103,pp.48–58. ofolderadults’.AmericanJournal Hudson, RandO’Connor, M2007,PalliativeandAgedCare: Aguidetopractice,AusmedPublications. AIHW 2008,Residentialagedcare inAustralia2006–2007:Astatisticaloverview . Giles, LCetal.2003,‘DisabilityinolderAustralians: projections for2006–2031’. MJA,vol.179,pp.130–133. McNamara, Betal.2004,op.cit. etal.2001,‘WhereHunt, RW patientswithcancerdieinSouthAustralia1990–1999:apopulationbasedreview’. MJA,vol.175,pp.526–9. Tabor, Betal.2007,PlaceofdeathpeoplewithcancerinNSW . Sydney. CancerInstituteNSW. McNamara, Betal.2004,Whoreceives specialistpalliativecare inWesternAustralia—andwhomissesout,Universityof Australia. Foreman, LMetal.2006,op.cit.,pp.447. ABS andAIHW2005,op.cit. ibid. heart and circulatory disease—48 higher forarangeofotherbroad causesaswell. circulatory system 2.9 and 2.5 times as high for diseases of the 2.7 and3.2timesashighforinjuriespoisoning genitourinary system 5.3 and 7.3 times as high for diseases of the nutritional andmetabolicdiseases 7.5 and10.5timesashighforendocrine, cent since1999. dementia related illnesshaveincrease 138per people or 6 per cent of all deaths. Deaths from dementia andAlzheimer’s Disease—8 171 17 160 peopleor12percentofalldeaths. renal, orrespiratory diseaseordiabetes)— end stage organ failure (end stage of chronic develop cancerbyage85. deaths. One-in-three people can expect to cancer—42 or 34percentofalldeaths. 38
418 deaths or 30 per cent of all
456 people 37 Many Many 34
:
36 35
Lynn calls this‘masscustomisation’. occur inresidential agedcare facilities. increase by70percentinthenext30years. residential aged care facilities is expected to and many will die there. The population of that more people will require residential aged care As theAustralianpopulationageswecanexpect died athome. died inhospitalorhospiceandonly15.8percent study found that 75 per cent of cancer patients In SouthAustraliaresearchers undertakingasimilar be predicted andthatshould beplannedfor. individual, people do have similar needs that can patient’s journey at the end of life is unique and and experience. Lynn argues that although each allow unacceptable variation in the quality of care improving care at the end of life will continue to Failure to develop system-wide approaches to a person-centred systemofcare. journeys is critical to achieving the reform goal of understanding thecommoncharacteristicsoftheir these systems in the experience of patients and individual patients. Grounding the development of support and enable high-quality, safe care of end ofliferequires thatwedevelopsystems Improving person-centred care for all people at the care centred around each individualpatient. The broad healthsystemreform agendascallfor attheendoflife Patient journeys admission care residents will die within six months of admitted to a residential aged care facility as high Currently, almost one-third of people who are setting. close to two-thirds died in some form of institutional people die in their usual place of residence, and and accidental deaths) found that over one-third of examining deaths from all causes (excluding sudden year. 43 By 2020 half of all deaths are expected to 40 42 , and 61 per cent will die within one 39 Research inWestern Australia
44 41
45
48 47 46 over time. common illness trajectories that define care needs months and years of life. Lynn has described three follow fairlystereotypical pathwaysoverthelast It is grounded in the observation that most illnesses population andtomeettheirpredictable needs. design of systems to match the size of the as one of system design and reform. It allows the decision makingbythepatientandclinician,but the problem of end of life not as a problem of The mass customisation approach conceptualises illness becomes overwhelming and leads to death. illness becomesoverwhelmingandleadstodeath. with a few weeks or months of rapid decline as the Good functionmaybemaintainedforsometime, evident declineoveraperiodofweeksormonths. Trajectory 1 is characterised by a short period of T by Lynn are describedbelow: The three common illness trajectories proposed and peacefuldeath. to achieve the desired outcome of a timely, dignified necessary is assessment andgoodcommunication journey attheendoflifeisdifferent andcareful none of the described trajectories. Each individual priorities orneeds.Somediseasesmayfollowall or family circumstances may arise and change progression may also vary. Other disease and social at any stage along each trajectory and the rate of patient journeys may vary widely. People may die progressive illness at the end of life, individual overview ofthecharacteristiccoursechronic, While illness trajectories provide a conceptual of life. better plan and prepare for their journey at the end professionals and patients, their families and carers and their characteristics may also help health Understanding these common illness trajectories health andsocialservices. probable needs and patterns of interactions with for understanding timeframes and patterns of these illness trajectories provides a broad framework life. Nevertheless, thinking about reform in terms of outcomes forpeopleapproaching theendoftheir trajectories can be translated into improvements in research is needed to understand how awareness of based onlongitudinal,qualitativestudies. These illnesstrajectorieshavebeenconceptually rajectory 1 ibid. 2 June2008). Murray, SAetal.2005,‘Illnesstrajectoriesandpalliativecare’. BMJ, vol, 330, pp. 1007–1011. Downloaded from www.bmj.com (accessed ibid. 46
47 More
per cent) will have illnesses that will not follow any of It is recognised that some people (approximately 15 their mideighties. dementia (trajectory3)afflictingthosewholivepast (trajectory 2) about a decade later and frailty and around age 65, fatal chronic organ system failure afflicted, with illness trajectory 1 (cancer) peaking are roughly sequential in relation to the ages The three characteristic trajectories described above 40 percentofpeoplewillfollowthistrajectory. or urinaryinfection—canprove fatal.Approximately physical events—forexampleafallorrespiratory capacity combinedwiththeimpactofoftenminor physical function. Gradual decline in functional disability from abaselineofalready lowcognitiveor This trajectory is characterised by progressive generalised frailty. age willbelikelytodieofeitherdementiaor Those whoescapecancerandorgan failure asthey T trajectory. About 25percentofpeoplewillfollowthis failure andemphysemaare themostcommon. many illnessescanfollowthiscourse,chronic heart despite their long-term chronic illness. Although The timingofdeathisoftenasurpriseinthisgroup, episodes butatsomepoint,rescue attemptsfail. disabilities. Patients usually survive many such home withoutmuchprogression oftheireveryday If patients survive an episode, they may well return admission tohospitalandintensivetreatment. These exacerbations are frequently associated with severe exacerbationoftheirphysicalsymptoms. years. They frequently experience acute and often pulmonary disease(COPD)are usuallyillformany Patients with heart failure or chronic obstructive of functionwithintermittentsevere, acuteepisodes. Trajectory 2 is characterised by long-term limitation T follow thistrajectory. of a person’s life. About 20 per cent of people will comprehensive care over the last weeks or months care services that concentrate on providing This trajectory meshes well with traditional palliative this course,itistypicalofthemajorcancers. plan forendoflifecare. Whilemanydiseasesfollow Generally there is time to anticipate needs and rajectory 3 rajectory 2 48
27 Dying differently—understanding complexity at the end of life 28 Dying differently—understanding complexity at the end of life 49 experience andneed. arrangements around these three patterns of Lynn proposes that society could build care challenges (seeSection4). Neurone Disease (MND). These present unique those thatare rapidlyprogressive suchasMotor the three trajectoriesdescribedbyLynn, particularly when individualshavenotorare unabletospecify should be built into the system to ensure that even of every individual patient or clinician. Good care than one that requires tailoring to meets the need to servetheneedsofmajoritypatientsrather good care starts with a health care system arranged individual doctorsandpatients.Itproposes that care arises solely from the prudent choices of approach does not rest on the premise that good Lynn, Jand Adamson,DM2003,Livingwellattheendoflife:adaptinghealthcare toseriouschronic illnessinoldage,RANDHealth,SantaMonica,CA. 49 This anticipatory planning of lifeexperiences predict from the accumulated knowledge about end support for those elements and needs that we can approach the end of their life. Rather it adds system communicate andplanwellwithpeopleasthey reduce an individual’s autonomy or the need to system levels.Lynn’s approach doesnotremove or to plan appropriately at the individual consumer and of life is to understand how they are likely to die and key to caring well for people as they approach end the need for, and use of, health care services. The common patterns of symptoms, experiences and in While each person’s journey is different, there are ensure thattheywill. care because the system has been designed to choices orpreferences theywillstillreceive quality illness inoldage.RandHealth.SantaMonicaCA) (Lynn J and Adamson DM. (2003) Figure 3:Illnesstrajectoriesattheendoflife LOW HIGH LOW HIGH LOW HIGH FUNCTION FUNCTION FUNCTION
LONG-TERM LIMITATIONS WITHINTERMITTENTSERIOUSEPISODES
MOSTLYCANCER
MOSTLY HEART AND LUNG FAILURE LUNG AND HEART MOSTLY MOSTLY FRAILTY AND DEMENTIA AND FRAILTY MOSTLY TIME TIME TIME SHORT PERIODOFEVIDENTDECLINE SHORT Living well at the end of life: Adapting health care to serious chronic PROLONGED DWINDILING DEATH DEATH DEATH 29 Dying differently—understanding complexity at the end of life 30 Dying differently—understanding complexity at the end of life Cu Section 4 and challenges rr ent i ss
ue s
31 CURRENT ISSUES AND CHALLENGES 32 CURRENT ISSUES AND CHALLENGES 53 52 51 50 governments. performance accountabilities between and a complexity of funding responsibilities and are associated with health system fragmentation whole ofhealthsystemstructuralimpedimentsthat end of their life. These challenges also arise from communicating with those who are approaching the reality of death, talking about death and dying and as a consequence of our difficulty in facing the professionals and care systems. In part they emerge individual patient level to communities, health These challenges exist at all levels from the possible experience. patients, andtheirfamiliescarers, havethebest end oflifecreates challengesinensuringthat system and the needs of people approaching the misalignment between the orientation of the health those wholived50or60yearsago.Thecurrent Consequently we live longer and die differently from conditions thatwere oncemore immediatelyfatal. that we can now do more to treat illnesses and past half century. Advances in medical care mean The health system has changed radically over the Section 4:Currentissuesandchallenge not beenendoflifecare. introduction for those whose substantive work has the proposed Guidance elements, particularly as an intention is to provide a context for understanding reflected by the evidence in the literature. The Conference and the National Forum and that are out of the consultations conducted at the National has been based on the key messages that emerged selection of issues and challenges presented here of their incorporation in this document. The systematic review. However, that is not the purpose are complex issues, each worthy of detailed and approaching the end of their life. Individually these makers in providing good-quality care to people consumers, carers, clinicians,researchers andpolicy the current keyissuesandchallengesfacedby This section provides a brief, selected overview of and endoflifeservices. as to the most effective ways to provide palliative between states/territories—orwithinthesector— little commonunderstandingoragreement Steinhauser, KEetal.2000,‘Factorsconsidered importantattheendoflifebypatients,family, physicians,andothercare providers’. JAMA;vol.284;pp.2476–82. Zimmermann, C2007,‘Deathdenial:obstacle orinstrumentforpalliativecare? Ananalysisofclinicalliterature’. SocialHealthIllness,vol.29,pp.297–314. Department ofHealth,SocialServicesandPublic Safety2009,PalliativeandEndofLifeCare Ireland StrategyforNorthern ConsultationDocument. Australian GovernmentNationalHealthandHospitals ReformCommission2009,op.cit.,pp.3. 50 Theyare furthercompoundedby
of andcontrol ofsymptoms. treatments, advance care planning and awareness process itself, dying at home, stopping futile discussion about important issues such as the dying to effective care at the end of life as it limits open Breaking taboos—talkingaboutdying from death. expectancy increases and we distance ourselves been exacerbated in recent decades as life often characterised as ‘death denying’ and this has life care accessible when needed. Our society is important challenges to making high-quality end of and dyinginthewidercommunitystillpresent end of life issues and obstacles to discussing death Limited community and professional awareness of usually more importanttopatientsandfamilies. psychosocial and spiritual components that are self, andoftendoesnotalignwithbroader many health professionals emphasises the physical greater impediment. The biomedical perspective of the attitude of health professionals that may be the affect patients, families and health professionals, it is While thedifficultiesindiscussingdeathequally • • • • • • • Key consultationmessages: Make endoflifecare everybody’s business. and dyingissues. Need to improve public awareness of death care’. death’ butshouldbeabletoguarantee‘good The reality ofdying—can’t guaranteea‘good helplessness, insignificanceanduncertainty. evokes, i.e.asenseofvulnerability, death and the deeply held anxieties this meaningful response tosomepeople’s fearof Palliative andendoflifecare canprovide a dying. to engage in conversations about death and system that would ‘allow’ health professionals Promote aculture changeandaflexible Make itnormaltotalkaboutdeathanddying. placed backineverydayconversations. The language of death and dying needs to be 51 Denialisconsidered animpediment 52
53
options andpreferences. our capacitytoengageinopendiscussionabout 57 56 55 54 Aligning understanding awareness. to enable increased community and professional accepted in a multicultural society will be required palliative and end of life care is viewed and A majorculturalandbehaviouralshiftinhow the psychosocialandculturalissuesinvolved. proposition but requires a deep understanding of Changing deeply rooted mores is not a short-term subject, evenwhenpatientsmaynotbeableto. need tobeskilledintalkingaboutthisdifficult issues and impending death. Health professionals barriers to open communication about end of life with mismatched perspectives and attitudes creates The pervasive curative medical model combined According toPerkins: to define and differentiate different types of services Jargon has evolved as health professionals struggle to referral andcare planning. medical conditionsandtreatments actsasabarrier care begins in the context of increasingly complex end of life. Lack of clarity regarding when end of life needs and service provision for people approaching language used by health professionals to describe is compounded by the lack of a shared and common The societal reluctance to talk about death and dying • • • Key consultationmessages: Hillman, K2009,op.cit. Department ofHealth,SocialServicesandPublic Safety2009,op.cit. Perkins, HS2007,‘Controlling death:thefalsepromise ofadvancedirectives’.Med,vol.147,pp.51–7. AnnIntern Knauft, Eetal.2005,‘Barriersandfacilitators to end-of-lifecare communication forpatientswithCOPD’.CHEST,vol.127;p.2188–96. experience ofdying. patients and families through the fearsome and aboveall,shouldcourageouslysee share responsibility forthosedecisions; despite the inevitable uncertainties; should guidance; should help make decisions When crisis hits, physicians should provide rhetorical frameworkdevelopedandagreed there isnoagreed definitionofpalliativecare. palliative care andendoflife. there is no common understanding regarding 56 Increased awareness should increase 55
54 .
Recognising patients who are dying lies in our lack of understanding of the indistinct lies inourlackofunderstandingtheindistinct Part of the difficulty in recognising a person is dying recently accelerated. and natural process of physiological decline has chronic health problems, but where the inevitable begun decades earlier with the emergence of that a person is dying—a journey that may have of care and training limit our capacity to recognise strongly held desire to treat and cure. Our systems Health professionals have the ability and the been anticipated. deaths are expected deaths, but many could have until themomentoftheirdeath. care hospitals and many are actively treated right up At present up to 70 per cent of people die in acute those whoare dyingandtreat themappropriately. unwillingness of health professionals to recognise care attheendoflifearisesfrom theinabilityor One ofthefundamentalbarrierstoachievingquality end oflifeservices. development and planning for palliative and creates unnecessaryconfusioninpolicy recognise care provided by others. Jargon also way different providers contribute to care and opportunity for misunderstandings and limits the incorrectly. Language variation creates the are used interchangeably and in many cases care, and palliative approach. Some of these terms care, endoflifecare, supportivecare, non-specialist a range of settings, for example specialist palliative palliative and end of life care professionals across provided bybothspecialistandnon-specialist • • • • Key consultationmessages: imperative totreat inhealthservices. paradigms tothemedicalmodeland we need to explicitly recognise alternative improving endoflifesymptommanagement. we need to ensure that there is a focus on when endoflifebegins. we need to develop a model to determine dying. the acutecare sectorneedsto‘recognise’ 57 Not all of these
33 CURRENT ISSUES AND CHALLENGES 34 CURRENT ISSUES AND CHALLENGES admission. illness and nearly one quarter were moribund on were assessed as having a severe or incapacitating not expected to survive on admission. Two-thirds study found that almost half of these patients were were classified as an emergency admission. The days of admission. The majority of these patients care provided to3000patientswhodiedwithinfour 64 63 62 61 60 59 58 A recent studyundertakeninIreland as weprovide forthoseweexpectwillsurvive. same quality of care to those we expect might die redesigned and reformed so that we provide the care and how health care systems can be and carer experiences are interpreted to improve what thejourneyofdyingentails.Howconsumer milestones. We are poorly educated to understand understanding the experience of dying and its cause of death, there is little to assist in age at which we can expect to die, the place and detailed statistics on death exist, for example the problems, ageing and dying. While reliable and boundary between chronic and complex health care that thepatientwouldnotsurvive. those cases where it was expected on admission treatment before the patient’s death—including in discussion had taken place on the withdrawal of participating in the study reported that no an intensive care unit. Almost a quarter of clinicians expected to survive on admission were admitted to Some ofthepatientsinstudywhowere not • • • • • • • • care provided tothesepatientsandincluded: The study identified a number of deficiencies in the For example,seeKuehn,BM2007.‘Hospitals embracepalliativecare’. JAMA, vol.298,pp.1263–5. Glare, PA etal.2003,‘Theinterfacebetweenpalliativemedicineandspecialistsinacute-care hospitals:boundaries, bridgesandchallenges’MJA,vol.179,pp.S29–S31. Mills, Metal.1994,‘Care ofdyingpatientsinhospital’.BMJ;vol.309,pp.583–6. Hillman, K2009,op.cit. ibid. The studyusedtheAmericanSocietyofAnaesthesiologists healthstatusscore toclassifypatients. Ireland. NCEPOD 2009.Caringtotheend?Areview ofthecare ofpatientswhodiedinhospitalwithinfourdaysadmission.NationalConfidentialEnquiryintoPatientOutcomeandDeath , of patient. failure to adapt level of care to health status delay inassessmentandtreatment; deficiencies indiagnosis; inadequate consenttotreatment; lack ofinvolvementpalliativecare teams; poor endoflifecare planning; lack ofmultidisciplinarycare; poor communicationandteamworking; 59 The majoritywere agedover65years. 58 examined the examinedthe
Hillman end of life end oflife Recognising people who need care at the hospital overcrowding. hospital emergency department services and were considered contributoryfactorsindemandfor in frailmedicalpatientswithcomplexconditions, planning fortreatment failure (especiallyafterhours) poor end of life care planning and the lack of life care patients in acute care hospitals because of who are clearly dying, the management of end of inappropriately aggressive treatment of patients In arecent review ofhospitalaccessblock, these issueshavebeenrecognised forsometime respond appropriately to that recognition. While processes must be designed to incorporate and phase has begun. Health systems and care foremost willbetheabilitytorecognise whenthat and the ways they will experience it. First and most individuals will make to the end of their lives all healthprofessionals understandthejourneythat Reform isneededatasystemsleveltoensure that challenges facing health care systems internationally. discussed above and speak to the common face tothestatisticsproduced bytheIrishstudy life. The stories presented by Hillman put a human medical and personal decision making at the end of care to deal with the complex problems surrounding the adequacy of current systems and processes of intensive care at the end of their life and questions and internationalacutecare hospitals. expression of this in the context of Australian it isonlyrecently thatthere hasmore direct • • • • Key consultationmessages: transition topalliativecare. the needtodevelopbetterclinicalmodelsfor people withnon-malignantconditions. quality end of life needs to be accessible to population. the needtodefineendoflifetarget ensure continuityofcare forallpatients. 61 describes the journey of many patients in 60 64
62,63
tools andlackoftime. communication, lackofappropriate assessment chronic diseases,acurativeculture, lackof of reasons, includingprognostic accuracyfor population islikelytobetheresult ofacomplexity of thebroader non-malignantdiseasetarget The failure toprovide endoflifecare tomuch dementia) allfallunderthetarget population. liver disease,congestiveheartfailure, COPD, vascular disease, malignancies, chronic renal and progressive chronic conditions (such as peripheral 75 74 73 72 71 70 69 68 67 66 65 regardless ofdiagnosis. to managementofthesesymptomsisthesame, of quality of life at the end of life. The approach psychosocial domains targeted at the maintenance approach focuses on a range of symptoms and general experience in Australia. A needs-based based system of care, but this has not been the diagnosis istheoverarching principleofaneeds- Providing care on the basis of needs rather than the endoflife. to care aimed at supporting them as they approach their carers, could significantly benefit from access Disease (MND), multiple sclerosis), and the needs of conditions (for example dementia, Motor Neurone the needsofmanypeopledyingnon-malignant diseases. Ithasbecomewidelyacknowledgedthat traditionally beentopeoplewithmalignant services in Australia, and many other countries, has life. The provision of specialist palliative care for appropriate care as they approach the end of is the ability to recognise patient and carer needs A fundamental tenet of ensuring quality care for all setting. involve specialist palliative care teams in any care a person’s needs are, the more appropriate it is to carer’s level of need. The higher and more complex the care offered is appropriate to the individual and may benefitfrom endoflifecare istoensure that An additional dimension to the recognition of who a long-termculture changeperspective. ibid. Rhee, JJOetal.2008,‘Attitudesandbarriers to involvementinpalliativecareofPalliativeMedicine , vol.11,pp.980–5. byAustralianurbangeneralpractitioners’.Journal ibid. Palliative Medicine,vol.22,pp.19. Mitchell, GK et al. 2008, ‘Do case conferences between general practitioners and specialist palliative care services improve quality of life? A randomized controlledNCEPOD 2009,op.cit. trial’. Palliative Care Australia2005,AGuidetoPalliativeCare ServiceDevelopment:Apopulationbasedapproach, op.cit. vol. 5,pp.17. Yohannes, A2007,‘Palliativecare provision forpatientswithchronic obstructivepulmonarydisease’.HealthandQualityofLifeOutcomes , Fischer, J2006,‘Palliatingsymptomsother thanpain’.AustralianFamilyPhysician,vol.35,pp.766–70. Skilbeck, JandPayne,S2005,‘Endoflifecare: adiscursiveanalysisofspecialistpalliativecareAdvancedNursing , vol.51,pp.325–34. nursing’.Journal Murray, SandSheikh,A2008,‘Care forallattheendoflife’.BMJ,vol.336,pp.958. McNamara, Betal.2004,op.cit.,pp.2. 70 Despite the high number of people dying 65,66,67 69 68 Manyoftheserequire Persons living with
cent ofcasesreviewed. involvement ofthepalliativecare teamin81per illustrative of this, reporting that there was no within four days of admission to hospital is structures of the hospital. The Irish study of deaths integrated into the various clinical systems and in hospitals,endoflifecare isnotyetfully support caseconferencing andcare planning. Enhanced Primary Care Medicare items that would anecdotally reported that there is underutilisation of practitioners (GPs). among themostcomplexchallengesforgeneral Providing high-qualitycare attheendoflifeis in residential agedcare facilities,inparticular. end oflifecare, needstogainincreasing priority appropriate recognition of who may benefit from palliative care services. The importance of the and structuralalignmentbetweenGPsspecialist care level with the need to achieve a better system Similar system-widechallengesexistataprimary preference ofpatientsandtheircarers. ill patients to die at home and that this is the proactive involvementofGPsenablemore terminally Despite these barriers there is evidence that the and salariedoutofpublicfunds) and specialist medicine (commonly hospital based self-employed andpaidonafeeforservicebasis) models forgeneralpractice(communitybased, These include: differences in structural and resource approach theendoftheirlifehavebeenidentified. equipped toprovide care topeopleasthey A number of barriers to ensuring that GPs are well beliefs andfearsaboutdeathdyingchallenging. severe, familyissuescomplexandtheGP’s own hours visits. and unwillingnesstoprovide homecare andafter- resources, andexperienceinpalliativemedicine; remuneration; lack of training, knowledge and 74 72 Patientsymptomsmaybe 71 71
73 ; lack of time and 75 It has been
35 CURRENT ISSUES AND CHALLENGES 36 CURRENT ISSUES AND CHALLENGES 84 83 82 81 80 79 78 77 76 professionals. There is also a requirement to ensure by consumers, their carers and health care preferences and needs are clearly understood various treatment modalities. Itiscriticalthat that may be available and the likely outcomes of based on an understanding of the realistic options approaching end of life is for an informed choice An important issue for patients and families Engaging consumers,familiesandcarers
• • • • • • • • • Key consultationmessages: O’Connor, Letal.2009,op.cit. march.pdf (accessed12May2010). Aoun, S2006,‘AssessmentoftheSupportiveandPalliativeCare NeedsofPeoplewithNeurodegenerative Disorders’ http://www.health.qld.gov.au/cpcre/pdf/Newsletter/2006_ Grande, Getal.2009,‘Supportinglaycarers inendoflifecare: current gapsandfuture priorities’.PalliativeMedicine;vol.23,pp.339–44. Higginson, Ietal.1990,‘Palliativecare: viewsofpatientsandtheirfamilies’. BMJ,vol.301,pp.277–81. Collegian, vol.16,pp.201–9. O’Connor, L et al. 2009, ‘Absolutely fabulous—but are we? Carers’ perspectives on satisfaction with a palliative homecare service’. Lynn, J2008,‘Reliablecomfortandmeaningfulness’.BMJ;vol.336,pp.959. Smith, RA2000,op.cit.,pp.129–30. AMA 2006,CodeofEthics,http://www.ama.com.au/codeofethics (accessed12May2010) pp. 42. Australian GovernmentDepartmentofHealthandAgeing2009,PrimaryCare ReforminAustralia:ReporttoSupportAustralia’s FirstNationalPrimaryHealth Care Strategy , make decisionsabouttheirownhealth. to engage with the health care system and carers at the centre of care will enable them Putting individuals, and their families and all (individual/family/health professional) levels. to beanongoingconversation,facilitatedat end of life and advance care planning needs treatment isanindividualchoice. ensure that people understand that active of lifecare planning. invest in consumer controlled options for end support thosechoices. family preferences about place of death and facilitate real choices around individual and preferences forcare at theendoflife. families tomakedecisionsbasedontheir facilitate theabilityofpatientsandtheir admission tohospitalsandcare facilities. partnership with patients and carers upon ensure that goals of care are defined in treatment from anearlystage. the probable outcomes of a course of regarding the realistic options available and with information to make an informed choice ensure that patients and families are provided involved atalllevelsinthesystem. patients and their families and carers must be opinion matters. ensure thatpeopleunderstandtheir 76
aligns withinternationalexperience. support incommunitysettings. individual’s care team, particularly in the context of as informal carers and as an integral part of an explicit recognition of the role of family carers both A further significant issue is the need for more process ofadvancecare planning. health care providers andpatientsfamiliesisthe in developing effective communications between extends totherightrefuse medicaltreatment. that an individual’s autonomy is maintained and this carers mayexceedthatofpatients. patients and that in some cases the needs of the relationship between the wellbeing of carers and increasing recognition that there is an inextricable have a choice at the end of life. There is also an carers is fundamental to the ability of patients to help. out of hours support, respite, domestic and financial personal, nursingandmedicalcare ofthepatient, psychological support, information, help with of carers. These include the availability of factors that are barriers to supporting the needs There is a mixture of individual and systematic of patientsandtheircarers. have a significant negative impact on the quality of life clearly indicates that a particular course is likely to expectations are not engendered, where the evidence this extends to ensuring that false hopes and individuals, carers and health care professionals and be approached as a collaboration between End of life care, like health care in general, needs to and carer engagementattheendoflife. about death,furtherexacerbatespositiveconsumer by carers asabarrierinAustralian studies care team is one of the most consistent issues raised medicalised. part of life because it has been institutionalised and that we have lost the notion of death as a normal interventions. Further there is significant concern about theprobabilities andconsequencesofany are not futile and that there is clear communication attempts atcurativeorlife-prolonging treatment Health professionals are obligedtoensure that 82 The lack of clear communication with the 78 As discussed earlier, reluctance to talk 79
An emerging approach 80 The presence of 81
83,84 and
77
psychosocial supportwhenneeded. emergency respite, equipment, therapies and that there isaccesstomedications, nursesandGPs, non-specialist inpatient settings it means ensuring 91 90 89 88 87 86 85 Right care, righttime,place problems, andtheremedial modelpredominates. how carers canbebettersupportedtoprevent researched, there is little empirical evidence as to adverse effects ofcaringhavebeenextensively carer literature has highlighted that while the However, a recent comprehensive review of the that isculturallyappropriate andaffordable. the righttime,inplaceandamanner being abletoseetherighthealthprofessional, at and carer outcomes. Accessibility essentially means is associatedwithpoorer andsuboptimalconsumer Inadequate access to palliative and end of life care
• • • • • • • Key consultationmessages: Irish HospiceFoundation2009,friendlyHospitals:DraftQualityStandards forendoflifecare inhospitals.Aconsultationdocument , Dublin,pp.54. 2008. ‘Development of a palliative care needs assessment tool (PC-NAT) for use by multidisciplinary health professionals’.Final_revised_v5_Sept08.pdf Palliative Medicine, (accessed vol. 12 22,May pp.2010) 956–64. In the Australian context, there is a needs assessment tool forFramework Centre 2008,Prognosticuse IndicatorGuidanceMarch. http://www.goldstandardsframework.nhs.uk/Resources/Gold%20Standards%20Framework/PIG_Paper_with advanced cancer patients, see Wallner, A better identification of patients at the end of life so as to trigger better assessment and planning and provision Oneof careof the bestrelated known to examplestheir needs. of this The approachNational Gold has Standardsbeen the development and use of prognostic indicators as part of the Gold Standards Framework that enables SA Health2009,PalliativeCare ServicesPlan2009–2016,pp.34. Department ofHealthNHS2008,op.cit.,pp.13. Palliative Care Australia2005,AGuidetopalliativecare servicedevelopment:Apopulationbasedapproach, op.cit. op. cit.,pp.29 Australian GovernmentDepartmentofHealthandAgeing2009,PrimaryCare ReforminAustralia:ReporttoSupportAustralia’s FirstNationalPrimaryHealth Care Strategy, Grande, Getal.2009,op.cit. care isdeterminedandavailabletoall. ensure thattheresponsibility forbereavement in regional andremote areas. articulate additional requirements for services status orlocation. to palliative care regardless of socio-economic to ensure all people have access develop enabling strategies coordinated, effectively ledandequitable. available, planned(asfaraspossible), ensure that services are available, known as available andaffordable inallsettings. ensure that appropriate medication is around theclock. ensure appropriate services are available right place. provide the right care, at the right time at the
86 In 85 and agedcare settings. settings, suchasacutehospitalwards andprimary psychosocial needsinnon-palliativecare specialist important in the recognition of symptoms and in theplaceoftheirchoice. more people at the end of their life to live and die unnecessary hospital admissions and can enable shows that the provision of 24/7 services can avoid are able to be accessed quickly. Emerging evidence time in the 24/7 cycle and it is essential that services person’s conditioncanchangerapidlyandatany One ofthekeyissuesaround accessisthata locations, andbeculturallyappropriate. needs across all care settings and geographic wide range of symptom related and psychosocial approaches need to be flexible to accommodate the facilitate access to care. Models of care and service delivery and funding models that block rather than goal should be to change those aspects of service challenges posedbygeographyforinstance,our While wemaynotbeabletochangesomereal care setting. age, culture, geography, socio-economicstatusor require care, regardless oftheirdiagnosis,prognosis, be accessible and based on need to all people who each ofthecare settings.Healthcare servicesshould use of all members of the palliative care team within seamless care) and may also mean the more effective between care settings(seesectiononintegrated/ relate to each other, particularly at the interface This mayinvolvetheredesign ofboththewayservices circumstances change. opportunities for intervention and review as referral to palliative care services as well as provide increasingly utilisedtoassistinpromoting timely consistent use of referral ‘triggers’ is being 2009: ‘Inhardship cases,particularly inruralareas, Prescribing Service and Palliative Care Australia in According to a report co-authored by National Benefits Scheme(PBS)medicines remains anissue. Affordable access to many non-Pharmaceutical 87
89,90 91
This is particularly Thisisparticularly 88 Furthermore, the
37 CURRENT ISSUES AND CHALLENGES 38 CURRENT ISSUES AND CHALLENGES 99 98 97 96 95 94 93 92 Cultural appropriateness to accesscertainmedications.’ the communitycanresult inhospitalisationorder circumstances, lack of access to non-PBS drugs in this means these drugs are often not used. In some have accesstoservicesthatmatchtheirneed. who would benefit from care at the end of life should The fundamental principle should be that people community. utilised to maintain access to these in the that adhoc‘workaround’ strategiesare sometimes of public hospitals and there is anecdotal evidence drugs are only subsidised through outpatient clinics planning and truth telling, communication and decision making around autonomy, advance care profound cross-cultural differences in end of life care providers. The evidence suggests that there are choices, and the cultural competencies of health both from theperspective ofconsumerandcarer influence ofculture andethnicityonendoflifecare, appropriately in the Australian context is the A key determinant of the ability to access services • • • • • • Key consultationmessages: Prior, D2009,‘Bridgingthegapofinequities—IndigenousAustralians’.EoL,vol.1(2),pp.12–3. palliativecare.org.au/Portals/46/Policy/PCA%20interim%20position%20statement%209-12-9%20ATSI.pdf (accessed12May2010) Palliative Care Australia2010,InterimPositionStatement—Improving accesstoqualitycare attheendoflifeforAboriginalandTorres StraitIslander Australianshttp://www. Krouskos, D2009,‘Equity—Aviewfrom themulticulturalfrontline’. EoL;vol.1(2),pp.14–5. structural andorganisational changerequired todevelopedsystematicandsustainedculturalcompetence. National HealthandMedicalResearch Council2005,CulturalCompetencyinHealth:Aguideforpolicy, partnershipsandparticipation , has a comprehensive discussion about Kanth, F2006,CulturalcompetenceinEndofLifeCare forAsianIndianImmigrants , 8September, research presentation, DalhousieUniversity, Canada. Lickiss, JN2003,‘Approaching deathinmulticulturalAustralia’.MJA;vol.179,pp.S14–S16. Johnstone, M-JandKanitsaki,O2009,‘Ethicsadvancecare planninginaculturallydiversesociety’.JTranscult Nurs ; vol.20,pp.405. National Prescribing ServiceandPalliativeCare Australia2009,Achievingqualityuseofmedicinesinthecommunityforpalliativeandendlifecare, Canberra. programs atalllevels. into palliative and end of life education incorporate culturalcompetencyandsafety outcomes. address racial and ethnic disparities in health for Indigenouspeople. provide resources to allow‘returntocountry’ of life. safety of systems to provide care at the end improve cultural competency and cultural practices. world views—knowledge, values, beliefs and ensure care is reflective of different cultural informed, competentandappropriate way. ensure planningisapproached inaculturally 92 Further, some
supported byorganisation-level commitment. professional culturalcompetence,systematically which require the application of individual and thinking abouthowservicesare delivered: emerging paradigms require significant shifts in For culturally and linguistically diverse communities transitions. cultural practice relating to palliation and end of life and Torres Strait Islander traditions, values and biomedical paradigm, should integrate Aboriginal are dominated by western traditions and the of palliative and end of life care in Australia, which spiritual and cultural beliefs. Contemporary models programs thatrespect andaccommodatetheir Islander Australians, and to develop strategies and culturally appropriate toAboriginalandTorres Strait failures in providing quality end of life care that is There isaneedtoacknowledgemore openlyour Aboriginal andTorres StraitIslanderAustralians. approach toendoflifecare isrequired for Similarly a culture-centred, person-focused person-focused approach. It isclearthatculturea isaspecificdimensionof
attitudes tomedication,amongothers access tocare. factors that create barriers to equitable economic, attitudinal, linguistic and cultural generalisations totakeaccountofsocial, the prescriptive approach of cultural care institutions is to move beyond genuine and sustainable reform of health A more fundamentalrequirement for Australians. and treatment optionsavailable toother communities gain equal access to service family care. At the same time, Indigenous offering additional approaches to patient and respect canenhancepalliative care services, to end of life care. The reciprocal process of differences that influence aspirations relating that facilitate understanding of cultural care providers should build relationships Indigenous and non-Indigenous health 98 Attheheartofthisisrespect ofculture: 99 97
93,94,95
96
105 104 103 102 101 100 planning anddeliveringendoflifeservices. with otherhealthcare professionals involvedin appropriate communitybasedcare andinliaising Health Workers playakeyrole inproviding Community Care (HACC)workersandAboriginal life. AboriginalandTorres StraitIslanderHomeand important role intheprovision ofcare attheendof nurses, psychologistsandsocialworkersplayan Aboriginal andTorres StraitIslanderdoctors, Workers tobetrained. it would require a further 2000 Aboriginal Health as healthprofessionals asnon-Indigenouspeople, Aboriginal and Torres Strait Islander people working estimated that to achieve the same proportion of education health qualifications. In 2004, it was the healthworkforce andamongthosewithhigher Strait Islander people being under-represented in This is compounded by the Aboriginal and Torres their ownhistories,languagesandculture.’ own backgrounds, and are therefore saturated in recognise thattheirunderstandingscomefrom their perceptions. Both staff and patients need to shape the structure of their own biomedical [Aboriginal andTorres StraitIslander]storyandletit if health professionals learned to listen to the Research has found ‘Communication would improve to inappropriate andinadequatehealthcare. Aboriginal and Torres Strait Islander peoples leads understand or appreciate the cultural practices of at the end of life is communication. A failure to One major issue affecting our ability to provide care locally developedspecificstrategies. acknowledged andmayneedtobeaddressed by as unique Australians. The differences must be groups are affected by the problems that face them instances different needs. Nevertheless, both different cultures andhistoriesinmany Aboriginal and Torres Strait Islander peoples have Strait Islanderpeopleworkinginthesesettings. There isgreat needformore AboriginalandTorres National ConsensusProject forQualityPalliativeCare 2009,ClinicalGuidelinesforqualitypalliativecare, 2ndEdition,pp.9. Australian GovernmentDepartmentofHealth andAgeing2009,PrimaryHealthCare ReforminAustralia,op.cit.,pp.64. 2009) National AboriginalCommunityControlled HealthOrganisation 2008,Ourguidingprinciples, Canberra. http://www.naccho.org.au/aboutus/principles.html (accessed 7 July Sullivan, Ketal.2003,NationalIndigenouspalliativecare needsstudy:final report, prepared fortheAustralianGovernmentDepartmentofHealthandAgeing,Canberra. National RuralHealthAlliance2006,‘ThehealthofAboriginalandTorres StraitIslanderAustralians’ , Canberra. Cass, Aetal.2002,‘Sharingthetruestories:improving communication betweenAboriginalpatientsandhealthcare workers’.MJA,vol.176,no.20,pp.466–70. 101 103 100 102
Fragmentation across care settings optimal outcomes. care preferences beingcompromised andsub- life, where there is a real riskofneedlesssuffering, important than for patients and carers at the end of meet their needs for care and this is nowhere more consumers can navigate the health care system to need to be well coordinated and seamless to ensure and homecare). Theprovision ofsystemscare emergency departments, hospices, nursing homes integral toallhealthcare settings(acutewards, The delivery of care to people who are dying is
• • • • • • • Key consultationmessages: providers andcontinuityofcare. between different health services and health with effective and coordinated transitions care systemneedtobewellintegrated care needs, their interactions with the health with multiple chronic conditions and complex For all health consumers, but especially those all patients. ensure care coordinators are availablefor settings. sectors with a particular need in acute pathways and criteria, within and between develop andimplementendoflifecare improve information transfer between services. quality oflife. frequency of hospital admission and improve investment in GP led care will reduce of care. develop and implement collaborative models palliative care). in parallel (e.g. residential aged care and ensure that services work together rather than ensure continuityofcare forallpatients. 105 104
39 CURRENT ISSUES AND CHALLENGES 40 CURRENT ISSUES AND CHALLENGES 110 109 108 107 106 team are critical,suchastrust inthetreating doctor, has shownthatrelationships withthetreatment policy and service design. Evidence from overseas life care. Developingthis understanding iscrucialfor consumer, family and carer experiences of end of means in terms of consumer outcomes and relate directly toanunderstandingofwhatquality approach, the measurement of quality needs to In line with the principle of a consumer-focused through data T the interfaces‘right’. have anabsolute,non-negotiableobligationtoget and between health care professionals. In short, we at the interfaces between settings, between services chronic casesingeneral,relate tobarriersthatoccur care, and indeed the management of complex and associated withtheeffective provision ofendlife care are poorly managed. Many of the problems for patients when those transitions between sites of homes and home care are potentially high-risk events Transitions between hospitals, hospices, nursing
• • • • Key consultationmessages: he need to support quality improvement Department ofHealthNHS2008,op.cit.,pp.14. Palliative Care Australiawebsite:http://www.standards.palliativecare.org.au/Default.aspx?tabid=1794 (accessed12May2010). Palliative Care OutcomesCollaborative2009,op.cit. Heyland, DKetal.2006,‘Whatmattersmostin end-of-life-care: perceptions ofseriouslyillpatients andtheirfamilymembers’.CMAJ,vol.174,pp.627–33. Australian GovernmentNationalHealthandHospitals ReformCommission2009.op.cit.,pp.202. and organisationofhealthservices. new bestknowledgetoimprove thedelivery andbeingabletoapply continuous learning should be driven by a strong focus on We believe that our future health system the endoflife. develop definedmetricsforqualityofcare at and feedback. care, including standard datasets, indicators invest in data systems to support quality of end oflifecare. the inclusionofagreed nationalindicatorsfor through nationalhealthcare agreements for commitment importance ofagovernment when dyingandoutcomedrivenservices. importance of best-quality end of life care 106 Standards. program based on the National Palliative Care (NSAP) isanational,standardised assessment The National Standards Assessment Program over thepastthree years. six-monthly basis. Six reports have been released is akeyleverforchange. of improvement efforts. High-quality information practice orindeedenableassessmentoftheimpact making aboutservicedelivery, assess current it is not possible to undertake informed decision relevant, timelyinformationanddata Without accreditation schedules. undertaken on a two-yearly cycle to align with of their assessment. The NSAP assessment is Reports are provided to services on the completion and identifiesopportunitiesforimprovement. national standards andmatchedclinicalservices, report of service level performance against the nationally. The NSAP provides a benchmarked undertaken by 150 specialist palliative care services nationally. latest PCOC report included data from 86 services collection and reporting of routine patient data. The care service providers to improve care through the is a voluntary quality initiative that assists palliative The PalliativeCare OutcomesCollaboration(PCOC) Health andAgeing. national projects funded by the Department of understanding of quality and outcomes through at the early stages of developing a systematic information in the health system as a whole. We are experiences, reflecting the general dearth of and outcomesofendlifecare orconsumer little systematicdataavailableaboutthequality to achievinghigh-qualitycare. Currently there isvery Evidence-based policy and practice is fundamental can varywithindividualcircumstances. may berequired aswhatmattersintermsofquality also shows that a tailored patient-specific approach along withavoidanceofunwantedlifesupport.It effective communicationandcoordination ofcare, 108 109 PCOCreports are produced ona Currently Cycle1assessmentisbeing 110 107
118 117 116 115 114 113 112 111 the healthneedsofAustraliancommunity. sustainable, skilledandadaptableworkforce tomeet subset ofthebroader challenges ofdevelopinga approaching theendoflife canbeconsidered tobea care workforce to provide high-quality care to people needs of the specialist palliative care and wider health The challengesinmeetingthefuture development contemporary healthcare needs T
he appropriate workforce to meet • • • • • • • • Key consultationmessages: Australian GovernmentDepartmentofHealth andAgeing2009,PrimaryHealthCare ReforminAustralia, National PalliativeCare Program 2005,Principlesforincludingpalliativecare inundergraduatecurricula. Tang, M2009,‘Multidisciplinary teamsincancercare: pros andcons’.CancerForum , vol.33(3),pp.208–12. Ageing 2009.PrimaryHealthCare ReforminAustralia,op.cit.,pp.115. See Scott,IA2009,‘Healthcare workforce crisisinAustralia:toofewordisabled?’.MJA, vol. 190, pp. 689–92; Australian Government Department of Health and Crawford, GBandPrice,SD2003,‘Team working: palliative care asamodel ofinterdisciplinary practice’. MJA;vol.179,pp.S32–S34. Australian HealthWorkforce AdvisoryCommittee2005,AModelsofCare Approach toHealthWorkforce Planning,HealthWorkforce InformationPaper1. Segal, L2009,‘Issuesfacingthefuture healthcare workforce: theimportanceofdemandmodelling’.AustraliaandNewZealandHealthPolicy,vol.6,pp.12. Australian GovernmentNationalHealthandHospitalsReformCommission2009,op.cit. how wetrainourhealthprofessionals. growing support to strengthen and redesign collaborative modelsofcare. There is does not adequately foster team-based to reinforce professional boundaries and education of our health workforce still tends coordinated information). Meanwhile, the (riddled withgapsandincomplete,poorly requirements is a bit like Swiss cheese The planning of our future health workforce care. interdisciplinary teams on goals of end of life facilitate a common understanding among professionals workingintheagedcare sector. facilitate ongoing training of health aged care sector. review the educational requirements of the medicines. proactive end of life planning and use of facilitate development of GP skills around conversations onplanningfortheendoflife. health providers onearly/difficult develop a generic learning resource for all professional undergraduatecurricula. integrate palliative care into all health carers andvolunteers. optimise the workforce skill mix (including professionals. is a paradigm shift in attitudes by health facilitate education to ensure that there 111
• • including: practice andskillmixofhealthcare professionals, a re-examination of roles, responsibilities, scope of A number of factors are also increasingly leading to teamwork. relationships that are often an inherent barrier to professional resistance and poor interpersonal management ofbarrierstochange,andinparticular This will require the proactive but sensitive settings. resourced, interdisciplinary, community based incorporated atalllevels,inappropriately better be of studentsandhealthprofessionals to community also requires education and training The growing complexity of care provided in the continuing professional education. education at both undergraduate level and in nature, scope and approaches to the delivery of life care. Considerable variation also exists in the adequately prepare the health workforce for end of concern thatundergraduate educationmaynot Undergraduates (PCC4U), there is still considerable programs likePalliativeCare Curriculumfor some improvement in recent years through national in training and education. While there has been These changingworkforce dynamicsrequire support contemporary modelsofcare. combined with more consumer-focused and riskfactors,age,ethnicity, geographyetc.) approaches (socio-economic, health status, disease be grounded in evidence-based population needs strategies. These give recognition to the need to of newworkforce planninganddevelopment disease are currently leadingtothedevelopment Changes to the demographics and patterns of professionals. utilising the full capacity of existing health workforce shortagesandsupportforbetter team-based andshared-care models inherent relationship changescausedbynew 118 op. cit.,pp.117. 116 115 112,113
117 114 ;
41 CURRENT ISSUES AND CHALLENGES 42 CURRENT ISSUES AND CHALLENGES issues astherest oftheworkforce. Palliative care nurses have the same age profile geographical serviceregion. on specialistmedicalcare tobeproximate withina spoke modelsinnon-metropolitan areas astheyrely of flexible models such as shared care or hub and This has significant implications for the development populations. by logistical challenges of servicing highly dispersed 123 122 121 120 119 about onethird per100 000ofthestateaverage. outside of the Greater Sydney Metropolitan Area is that the number of palliative medicine specialists outside of metropolitan areas. Data for NSW shows patterns, withunmetneedbeingbyfarthegreatest medicine specialists it needs under current referral needs. Australia has about half the palliative care available workforce maybeinsufficienttomeet There is a larger risk that the overall growth in the availability. professional considerations all impact on workforce professional support and other lifestyle and leave, limitedavailabilityoflocums;lackinter- regions. System-wide issues such as inability to take professionals, particularly in rural and remote services is the poor distribution of health challenge to the equitable access to palliative care workforce availabilityanddistribution.Amajor Finally a range of challenges exist with regard to centres. allied health professionals as people in metropolitan regional centres haveaccesstoaboutahalfasmany areas isanissueaswell).People livinginouter (although availability in some outer metropolitan remote areas compared to metropolitan areas number being available to regional, rural and GPs is a generic problem with about half the In primary and aged care settings the availability of further availability. practice nurses over the last decade may impact on dynamics, suchastheenormousgrowth inGP ibid, pp.31. Australian GovernmentDepartmentofHealth andAgeing2009,PrimaryHealthCare ReforminAustralia,op.cit.,pp.114. SA Health2010,op.cit. GovernmentDepartmentof HumanServices2006,PalliativeCareVictorian Workforce. Asupply. anddemandstudy ANZSPM 2009,BenchmarkNumberofSpecialistsinPalliativeMedicine , PositionStatement. 122 These shortages are further exacerbated 123 120,121 and industry andindustry 119
A services forresidents ofaged care facilitiesthat federal and state/territory funding for palliative care exacerbated by the current incoherent mix of support forfamiliesandcarers. Thisisfurther and support in aged care facilities, including recognise the real cost of providing end of life care the Aged Care Funding Instrument (ACFI) needs to facilities inparticular. Fundingforaged care under care for older people in general, and aged care appropriate models of care to support end of life A particular area of concern is the resourcing of suboptimal outcomes. gain access to a service, often resulting in in turn affects the ability of patients and carers to fundamentally affects workforce distribution and this equitable resourcing. Inadequate resourcing also not possible without adequate, appropriate, and The provision of high-quality care at the end of life is • • • • • • • Key consultationmessages: dequate and appropriate resourcing models ofcare. service to be built into the financing of time requirements todeliverahigh-quality promote the need for an accurate reflection of population data. develop adequate funding models based on already made. facilitate the sustainability of improvements invest in funding of successful projects to improve supportforcarers includingrespite. community care funding. review current residential aged and coordination. coordination, telephonesupport/ home visits, case conferencing, care benefit schemes (MBS)—that will facilitate through palliativecare itemsinmember increase capacity of primary care practitioners of lifecare. provide for equitable resourcing of end
towards children withcancer. cancer. Thisislargely duetothepublicsympathy compare poorly with those available to children with resources available to this medically fragile group also may not receive equal access to care. The Further, children with non-malignant terminal illness 130 129 128 127 126 125 124 Special needspopulations barriers tothem. support flexible models of care, rather than create patients. Funding and other resources need to the availability of publicly funded services to private care servicesbyprivatehealthinsurers, particularly uptake of out of hospital palliative and end of life care team. There are also disincentives to the specialist palliativecare providers intotheprimary works against the integration of both GPs and reinforces the maintenance of professional silos and regimes thatcanbecomplexandisolating. dimensions of family life, with often long-term care and there are usually profound effects on all of familieschoosetocare fortheirchildren athome, system-wide reform andcare models.Themajority require special consideration in the development of and their families are nevertheless unique and are for adults, the end of life care needs of children improving thedeliveryofservicesforchildren asthey While many of the above issues are as relevant to Children • • • Key consultationmessages: pp. 1144–63. Birch, DandDraper, J2008, ‘Acriticalliterature review exploringthechallenges ofdeliveringeffective palliativecare toolder peoplewithdementia’.JClinNursing vol. 17, Alzheimer’s Australia2006, PalliativeCare andDementia. Mitchell, SLetal.2009,‘Theclinicalcourseof advanced dementia’.NEngJMed,vol.361,pp.1539–38. Chang, Eetal.2006,PalliativeCare DementiaInterface:EnhancingCommunityCapacityProject FinalReport , UniversityofWestern Sydney. Australian GovernmentDepartmentofHealth andAgeing2003,PaediatricPalliativeCare ServiceModelReviewFinalReport,RuralHealthandPalliativeCare Branch. New ZealandMinistryofHealth1994.Children andyoungpeoplewithaterminalillness , Wellington. service’. PalliativeMedicine,vol.21,pp.689–96. Monterosso, L et al. 2007, ‘Supportive and Palliative Care needs of children and families in Western Australia: evidence to guide the development of a palliative care apply enablingstrategies. identify low access marginalised groups and remote locations. needed to address needs in regional and articulation of what extra measures are (e.g. Indigenous,ruralremote, prisons). importance of including marginalised groups 125
124
intervention. and the appropriateness of palliative care relating to communication; medical interventions associated with diagnosing terminal phase; issues care to older people with dementia; difficulties common challenges in delivering effective palliative A recent criticalliterature review highlightedfour care. benefit and not consistent with quality end of life hospitalisation for pneumonia that may be of limited subjected tointerventionssuchastubefeedingor understood and often people with dementia are use of burdensome interventions is not well recognition ofpaininpeoplewithdementia. it. ethical andsocialconsiderationsthataccompany due tothecomplexmedical,cognitive,emotional, of lifeconditions,itstreatment isoftenmore difficult similarities to some other commonly recognised end future. While the final stages of dementia have increasing number of patients and their carers in the the clinical course of dementia that will affect an One of the three trajectories in section 3 describes Dementia • • • • • paediatric palliativecare servicesinclude: Factors that have influenced the development of paediatric palliativecare provided across Australia. There are significant variations in the models of 127 care staff. availability of trained paediatric palliative range ofserviceproviders; and differing familychoices; of conditions; variability in the complexity of prognosis care services; variability in the demand for paediatric palliative Often the extent of physical suffering and the 128 There isalsostrong evidenceoftheunder- 130
129
126
43 CURRENT ISSUES AND CHALLENGES 44 CURRENT ISSUES AND CHALLENGES the outcomesofarecent project While there isstillonlylimitedresearch inAustralia • MND andtheircarers, including: some further challenges faced by people living with 136 135 134 133 132 131 discussions aboutpalliativecare. accept theterminalnature ofMNDandresist MND or their families can also be reluctant to supported by the literature. People diagnosed with patients will have on limited resources, a view also concerns about the high demand for care that MND the uncertaincourseofdiseaseandconsequent are often reluctant to take on MND patients due to palliative and end of life care. Palliative care services significant barriers in achieving equitable access to predict with certainty which raises itself as one of the three years. Prognosis at diagnosis is difficult to disability with an average life expectancy of two to complex disease of progressive loss and increasing the potentialtoslowdiseaseprocess. Itisa condition withtreatments that,atpresent, offer only Motor Neurone Disease (MND) is an eventually fatal Motor Neurone Disease(MND) settings are generallyill-equippedtodealwith. complications and behavioural changes that these confused andanxiousresulting infurther invasive procedures mayleavepatientsdisoriented, such as busy emergency departments, coupled with Inappropriate transfers into unfamiliar environments found atthetransitionsbetweencare sectors. with dementia as they approach the end of life is system failure to care appropriately for people Some ofthestrongest anecdotalevidenceabout White, Ketal.2004,‘Outofsightoutmind: reframing remoteness inproviding palliativecare inremote Australia’.Collegian,vol.11(3),pp.29–33. Springs, NT. White, Ketal.2004,Developmentofamodelforpalliativecare inruralandremote communities:the‘pop-upmodel’ , National SARRAH Conference (26–28 August 2004), Alice AIHW 2001,It’s different inthebush—acomparisonofgeneralpracticeactivitymetropolitan andruralareas ofAustralia,1998–2000 , Canberra. Australian GovernmentNationalHealthandHospitals ReformCommission2009,op.cit.pp.89. and supportpeoplelivingwithMND.http://www.health.vic.gov.au/palliativecare/mnd-report.pdf (accessed 12May2010). Pathway Project wasestablishedtodevelopaframeworkassistpeople livingwithMNDtoaccesspalliativecare services,andtoassistpalliativecare servicesmanage GovernmentDepartmentofHumanServices2008,MotorNeuroneVictorian DiseaseandPalliativeCare: InterimReportontheMNDPathwayProject. In July 2007, the MND Birks, C2009,‘MND—Aconditionfallingbetweenthecracks’EoL,vol.1(1),pp.20–22. people withMNDintotheoverallcare received. implemented to integrate the palliative care of there is no existing framework that can be 131 132
have highlighted
more complex cases and communication between areas; GPs are more time pressured and deal with regional and remote locations than in metropolitan palliative care services are 30–50 per cent lower in in urban areas. Population based admission rates to Australians receive poorer palliative care than those however, some evidence that rural and remote metropolitan areas, aswellinternallydiverse. economically and spiritually different from Australia isalsosociologically, culturally, access to health care services) rural and remote health remains its geography (and related issues of rural areas that impact on the provision of end of life care in There is a lack of research literature on the issues services. the disincentives that currently limit access to integrated multi-stakeholder strategies to change require system-wide funding changes and workforce) are generic to the health system and (e.g. lack of specialists, nurses and allied health and service availability. Many of these issues greater degree through reasons ofgeography, cost remote communitiesbutoftenare present toa urban communities are also shared by rural and Many ofthechallengesfacingmetropolitan or Rural andremote issues • • • and physical demands. and physicaldemands. causes considerable emotional, psychological the lack of appropriate and timely respite which numerous agenciesdifficult. disease madecoordinating care between the relative rarity and the progression of the of theservicethatpalliativecare offered. people with MND had a distorted understanding their level of knowledge regarding MND and palliative care workers did not feel confident in 133 135 While the defining characteristic of rural andremote communities. 136 There is
134 appropriateness). people (see earlier discussion on cultural numbers ofAboriginalandTorres StraitIslander exacerbated incommunitieswithsignificant appropriate palliativeandendoflifecare isfurther 24-hour care overvastdistances. care nurses also have difficulties in providing therapists, are alsochallenging. bereavement counselling and occupational Access to allied health services, such as and physicalbarriersassociatedwithdistance. knowledge about service availability and economic care are impacted by families having limited symptom management. Limited choices for home patient’s condition and uncertainties around the associated issues of difficulties in assessing the accessing services after hours and on weekends with 141 140 139 138 137 problematic. specialist services and primary care providers can be Phillips, Jetal.2006,‘Enhancingpalliativecare deliveryinaregional communityinAustralia’.AustHealthRev , vol.30pp.370–9. White, Ketal.2004,op.cit.;AustralianGovernment NationalHealthandHospitalsReformCommission2009.op.cit. Australian GovernmentDepartmentofHealth andAgeing2003,op.cit. White, Ketal.2004,op.cit. Australian GovernmentDepartmentofHealth andAgeing2003,Research StudyIntotheEducationalTraining andSupportNeedsofGeneralPractitionersinPalliativeCare. 137 There are particular problems in 138 139 Rural palliative Access to health care providers. often foundbetweenruralandremote primary ability to leverage the well coordinated relationships circumstances and community capacity with the need to be flexible and responsive to local for and provided. This indicates that models of care palliative and end of life care services are planned independence thatneedstobefactored intohow remote communities, such as self-reliance and are different social constructs relating to rural and homogenous; each community is unique and there that ruralandremote communitiesare not There is significant agreement across the literature rural andregional areas. delivery of effective and efficient palliative care in capacity is the most appropriate framework for the service development based on local need and a population-based approach to palliative care 140 The evidence suggests that Theevidencesuggeststhat 141 45 CURRENT ISSUES AND CHALLENGES 46 CURRENT ISSUES AND CHALLENGES international directions at theendoflife Reforming cae Section 5
47 CURRENT ISSUES AND CHALLENGES 48 Reforming care at the end of life National ConsensusProject development of guidelines and in particular the In the US there has been significant focus on the around palliativeandendoflifecare inFrance. the general public. It aims to develop a new culture health care workers, and support for volunteers and and disability services: education and research for all of networks to support end of life care in aged care and homecare services,includingthedevelopment development of hospital palliative care structures implemented inJune2008withthree primarygoals: Improvement. through the Institute for Clinical Systems the more recent development of clinical guidelines agreement on the elements of quality of care, and quality palliative care in 2004 and forged an first set of national guidelines for the delivery of 150 149 148 147 146 145 144 143 142 UK recognised as a national development priority in the people approaching the end of their life has been support system-wideimprovement incare for need to develop an overarching framework to whole-of-system and/or clinical perspectives. The further develop end of life care strategies from both of work undertaken in a variety of countries to In recent yearsthere hasbeenasubstantialamount of life—international directions Section 5:Reformingaeat theend work intheUS development program for2008–2012 care services. In France a national palliative care broad structural change in the delivery of palliative regardless of the setting of care and underpins for thoseapproaching theendoftheirlife, wide ranging agenda to achieve quality outcomes strategy onpalliativeandendoflifecare setsouta NHS agenda. The Canadian consensus-based establishing care for people at the end of life on the Health Service(NHS)NextStageReview, the eight principal care pathways for the National In the UK end of life care was identified as one of in Australia. national standards work that has been undertaken the development of standards, more akin to the Department ofHealthNHS2008,op.cit. Irish HospiceFoundation2009,op.cit. Covinksy, KEetal.1994,op.cit. National ConsensusProject forQualityPalliativeCare 2009,op.cit. Hirsch, G2009,SFAP: ‘Franceiswitnessing majordevelopmentsinpalliativecare’. EuropeanofPalliativeCare Journal ,vol.16(2),pp.100–1. Irish HospiceFoundation2009,op.cit. National ConsensusProject forQualityPalliativeCare 2009,op.cit. Health Canada2007,Canadianstrategyonpalliativeandendoflifecare. Finalreport. Department ofHealthNHS2008,op.cit. 142 , Canada 143 144 , and France. Some of the major , andFrance.Someofthemajor andIreland 147 145 which produced the has revolved around 146 was
stepped change. stepped change. variable andthestrategywastobringabouta recognised thatthequality ofcare wasgenerally local jurisdictions (Primary Care Trusts). It was decision making and service development to more reform agendafocusedon devolvingfunding, dying inhospital. study in 1994 of the experience of people who were The RAND Organisation also provided a landmark Strategy In 2008theNHSdevelopedEnd of Life Care England and models T service developmentinAustralia. further considering any guidance for policy and directions that we need to be cognisant of when highlighted belowisrepresentative ofthemajor end of life strategy, we believe that what is overview all major international developments in over 10 years old. While it is not intended to Australia’s NationalPalliativeCare Strategy, now document and should inform the review of contribute to the Guidance provided in this environments. These studies and reports will the challengesfacedintheirservicedelivery organisations in the last two years in response to by governments, quality improvement or peak they represent a significant body of work produced been developedinthesecountriesandcollectively Below are outlined some of the directions that have non-malignant chronic diseasemanagement. on the integration of end of life approaches into environments. There has also been seminal work life care provision in hospitals and other care benchmarks for best practice in relation to end of national standards program that establishes the Information andQualityAuthorityhasendorseda he international context—directions 150 thatwasalignedwiththebroader NHS 148 InIreland
149 , the Health
dementia and heart failure (the initial focus of the with chronic obstructivepulmonarydisease(COPD), manner; and that research has indicated that people patients are notbeingresponded toinaconsistent reflected the Irish experience that this group of of patients with diseases other than cancer and Palliative Care forAllspecifically addresses the needs Quality Standards forEndof LifeinHospitals. 152 151 overviewed here, PalliativeCare forAll There have been two seminal works that are Ireland • • • • • • • • • The keyareas addressed bythestrategyare: Irish HospiceFoundation2009,op.cit. Irish HospiceFoundation2008,PalliativeCare forAll.IntegratingPalliativeCare intoDiseaseManagementFrameworks. of care. measurement of structure process and outcomes lever for change and this will require measurement ofendlifecare provision isakey recognition that good information and at alllevelsandforstaff groups. continuing professional developmentincurricula embedding education and training, including needs assessed. that are available, as well as having their own progress of a person’s condition and services the provision ofinformationaboutthelikely involving and supporting carers, including range ofconditions. similar toolsacross arangeofsettingsand the adoptionofLiverpoolCare Pathwayor facilitating peopletodieintheirplaceofchoice. unnecessary emergency admissions and available in the community 24/7, avoiding change in a person’s condition and that is made rapid access to care that responds to a rapid across allsectorsandattimes. plan and the delivery of high-quality services coordination of care in accordance with the care available across settings. reviewed as circumstances change and are people’s needs, wishes and preferences that are the developmentofcare plansthatreflect development inthisarea. with emphasis in health professional skills identifying people approaching the end of life profile ofendlifecare. engagement with local communities to raise the 151 Draft andDraft 152
• • • • • • • education, servicemodelsandresearch: considerations across thedomainsofpolicy, The report had the following key general Guidance document. premise isusedinthedevelopmentofthispolicy framework, delivered onthebasisofneed.Asimilar care withinthedisease-specificmanagement delivery of non-specialist and specialist palliative limiting chronic illness can provide direction for the understanding ofthediseasetrajectorieslife- The report is based on the premise that creating an life limitingillnessthroughout thepatientjourney. address thepalliativecare needsofallpeoplewitha programs and the opportunity this provides to emergence ofchronic diseasemanagement The report is developed in the context of the conditions. palliative care needsthanpeoplewithmalignant study) canexperienceequalandsometimesgreater diseases andresearch is required. palliative care forpeoplewithnon-malignant models and clinical interventions relating to there is a dearth of evidence-based service to assistinidentifyingtheneedforreferral. disease-specific triggers need to be developed with specialistpalliativecare needs. in providing clarity and equity of access for those entry andexitfrom specialised servicescanassist the useofstandardised eligibility criteriafor a specialistpalliativecare service. there is appropriate training and support from primary care and disease specific services where have theirpalliativecare needsaddressed by it is recognised that the majority of patients can care staff andpalliativecare specialists. between thedisease-specificspecialist,primary a collaborative and/or shared care approach when palliative care service models are based on life-limiting nonmalignantdiseasesbenefitmost international evidence indicates that people with and informalpalliativecare education. care needs is addressed at all levels of formal it is vital that the changing nature of palliative basis ofneed,notdiagnosis. specialist palliative care is to be provided on the
49 Reforming care at the end of life 50 Reforming care at the end of life • • • • • • • • • • • • • are apparent withourhospitalsystems: 154 153 those hospitals. hospitals are theanalysesofdifficultiesfacedby to develop standards for the end of life care in Irish Perhaps some of the most instructive aspects of work recommendations foreachofthetarget diseases. The report also addresses a range of specific Covinsky, KEetal.1994,op.cit. Irish HospiceFoundation2009,op.cit. of serviceprovision. delivering the service rather than on systems quality of care depending on the person possible. as indicative that no further active treatment is negative public perceptions of palliative care to ‘share care’ withothers. a reluctance on the part of some consultants of accurateinformation). avail of these services (sometimes due to a lack a reluctance on the part of patients and carers to specialist palliative care services accordingly and advanced life-limiting illness and to refer to care professionals to discuss prognosis in sometimes a reluctance on the part of health life, resuscitation, lifesupport,organ donation. regarding issues such as preferences at end of poor public engagement in discussions of anacutehospital. and the supportive/comfort providing elements an inherent tension between the acute/curative departments. the excessivepressure onemergency services. inequality of access to specialist palliative care a shortageofspecialistpalliativecare services. professionals. of a palliative care approach by all health care underdevelopment of widespread application relating toendoflifecare. poorly developed integration of hospital systems private space. quality end of life care because of the lack of currently notsupportingthedeliveryofhigh- the physical environment in many hospitals an absenceofendlifecare strategy. 153 There are somesimilaritiesthat
preferences orprognosis oftheindividualpatient. local care systemthanwiththeparticular with the service supply and habit patterns of the The course of care is much more strongly associated • • • • • • • Australia. Thekeyfindingswere that: anecdotal evidence about end of life experience in undertaken intheUnitedStates,itsfindings reflect previously understood. While the study was number of facts about dying that had not been people whowere dyinginhospitalilluminateda One of the first large studies of the experience of RAND Health SUPPORT Study RAND HealthSUPPORT for variousaspectsofpalliativeandendlifecare. focused on the development of clinical guidelines produced in the United States in recent years are A number of key policy and guidance documents United States • options hadnoeffect onpatterns ofcare. implemented patient preferences among available care andencouragingdecision makingthat counselling aboutthepossiblealternativesfor serious illnesses. many whowillliveforalongtimewiththeir good care for the dying means taking care of cent chance yesterday to live another six months. of heartfailure todayhadapredicted 50per to death. For example the median person dying prognoses remain ambiguous even every close continued tofollowusualtreatment patterns. family members,physiciansornurses:they survival ofthepatientdidnotinfluencepatients, knowing reliable predictions concerning the patients. both for individual patients and for groups of likelihood ofsurvivalfortwoorsixmonths, statistical models of thehealthsystem. aggressive treatments as serious shortcomings caregivers didnotseeadversesymptomsor the patients, their families and their professional to theirdeath. many patients suffer substantially in the lead-up to supportthechoicedieathome. lack of adequate community based resources could accurately predict the 154
• • • • • improvement were highlighted: following issuesrelated toclinicalsystems 22 components.Indevelopingtheguideline with evidence-basednotationsforeachofits The guidelinewasdevelopedasanalgorithm • • • • • were: benefit from palliative care. Secondary objectives threatening orchronic, progressive illnesswhomay adult patientswithapotentiallylife-limiting,life- specialty care providers inidentifyingandcaringfor This guideline is targeted at assisting primary and 156 155 Health Care Guideline:PalliativeCare (accessed Feb2010). Center toAdvancePalliativeCare 2007,Improving PalliativeCare inNursingHomes.http://www.capc.org./support-from-capc/capc_publications/nursing_home_report.pdf Institute forClinicalSystemsImprovement 2009,HealthCare Guideline:PalliativeCare. hope are essential. realistic goals of care and providing realistic quality of care and patient well-being. Setting providers, patients,andfamilies canhamper communication difficulties among health care patient isvital. areas of suffering that are important to the management of both physical and non-physical and the recognition, assessment, and suffering is common in this patient population for care andadvancedirectives. systematic review and document patients’ goals health care providers shouldcompletea care conversationswiththeirpatients. health care providers should initiate palliative illness. patient’s journey of a progressive, debilitating palliative care planning should begin early in the patients withaprogressive, debilitatingillness. ongoing utilisationofadvancedirectives for to increase the completion, documentation and domains ofcare. as conditions warrant, utilising the seven adjustment of the patient’s palliative care plan to improve the continual reassessment and a progressive debilitatingdisease. who have been identified in the early stages of to increase palliative care planning with patients domains ofpalliativecare. patient’s palliative care needs utilising the seven to improve the assessment of the identified illness. those patients with a progressive, debilitating necessity and benefits of palliative care with the primary care provider in communicating the to improve the effectiveness and comfort level of 155
Improving PalliativeCare inNursingHomes • • • • • of theirresonance withtheAustralianexperience: project’s research are perhaps instructive because The following key findings distilled from this significant ongoingchallenges. population and high staff turnover constitute financial resources, thechanging resident wide scope of services to their residents, limited nursing homesstrivetodeliverqualitycare anda the models that work in the US context. While care delivery in nursing homes, the challenges and The study sets out the case for improving palliative documented. and under-treated pain in nursing homes is well dying in nursing homes. At the same time untreated coming decade, so too will the numbers living and severe, debilitating illnesses increases over the and that as the number of persons living with the US will triple or quadruple over the next 20 years to the recognition that the number of frail elderly in Advance Palliative Care was developed in response A significant study undertaken by the Centre to after thepatient’s death. the courseofillnessandfollowingfamily supporting thepatientandfamilythroughout in thegriefandbereavement processes by health care providers play an important role focus onsymptommanagement. interventions may continue with an increased in the delivery of palliative care, aggressive flexibility. Althoughsomeserviceswilleventually nursing homes require size, patience and hospices and/or palliative care teams and homes. Successfulpartnershipsbetween sustain palliative care programs in their nursing that several programs rely on partnerships to participants interviewed for this study reported in conflict. regimens andcare plansare ofteninadequateor documentation, reconciliation of pharmaceutical of care are poorlymanaged.Communication, interviews revealed that transitions between sites are high-riskeventsforresidents, andproject transitions between hospitals and nursing homes strategies thatmeetthesegoals. A concertedeffort isneededtoidentifyandtest by nursinghomesasgoalsforimprovement. management are targets consistently identified advance care planning and pain and symptom 156
51 Reforming care at the end of life 52 Reforming care at the end of life Care Canadian Strategy on Palliative and End-of-Life Canada • 157 • • Education forformalcaregivers: • • • Best practicesandqualitycare: outlined below. and program work in the Australian context are and keyaccomplishmentsthatare relevant topolicy establishment of five Working Groups was reached 2007. A consensus on five key areas, resulting in the Care was established in 2002 and was completed in The Canadian Strategy on Palliative and End-of-Life Health Canada2007,op.cit. improve palliativecare innursinghomes. care providers will be an effective way to teaching and shared care planning with palliative for frontline nursing assistant staff to informal homes with high turnover. Regular on-site access training nursing home staff has limited impact in revenue source. relationship, trainingandskillbuildingwithouta able to contribute time to building the be financially self-sustaining, partners need to be in theseareas. end-of-life care and graduate with competencies schools would receive education in palliative and post-graduate trainees at Canada’s medical undergraduate medical students and clinical collaborating to ensure that by 2008, all develop discipline-specificcompetencies. with physicians, nurses and social workers to graduate levels.Thisledtofurtherengagement care workersattheundergraduate andpost- nurses, social workers, pharmacists and pastoral care competenciesthatapply tophysicians, identifying the core palliative and end-of-life developing palliative care. norms of practice for paediatric hospice collaborating on the development of national Council onHealthServicesAccreditation. measurement tools,completedbytheCanadian care in Canada, including national standards and accreditation process for palliative and end-of-life collaborating on the development of an palliative care teams. quality ofservicevolunteersininterdisciplinary Care to serve as a framework to enhance the and Collaboration in Canadian Hospice Palliative 157 A Model for Volunteer Best Practice
quality including: life care, who receives it, and how to measure its information about who needs palliative and end of Developing asystemforcollectingandusing Surveillance: • • • • Research: • • • Public informationandawareness: palliative research. level students who want to build a career in supporting atrainingprogram tohelpgraduate- than cancer. researchers addressing terminalillnessesother collaborating with the growing community of translation andexchange. supporting initiatives to explore knowledge care research toolsandresources. website that includes palliative and end-of-life and end-of-lifecare researchers housedona implementation of a virtual network of palliative collaborating on the development and on cross culturalconsiderations. advance care developing and undertaking work developing a glossary of terms utilised as part of information needsofinformalcaregivers. developing a synthesis report called on the Awareness RaisingFramework. developing a Hospice Palliative Care Public – – –
end-of-life care services planning and evaluation of palliative and and government officials, to inform the policy, including clinicians, program administrators data needsofdifferent stakeholders, facilitating a national meeting to assess the quality oftheirservices. program administrators can use to assess the performance measures that palliative services. This resulted in an inventory of palliative and end-of-life care programs and ways to measure the performance of supporting an extensive literature review on care patientsacross Canada. collecting standardised data on palliative test a method for and assess the feasibility of collaborating on a two-phase pilot project to national directions at theendoflife Healt h careefom Section 6
53 Health care reform at the end of life 54 Health care reform at the end of life Care Standards andthedevelopmentofCaresearch. have been the redevelopment of National Palliative approaching the end of life. The exceptions to this cross-sectoral approach to and the care of people wide reform that is required to deliver an integrated major nationalworkundertakentodrivethesystem- improvement inthedeliveryofcare attheendoflife. and Quality in Health Care that support system-wide undertaken bytheAustralianCommissionforSafety Primary HealthCare Strategyandthework reform proposals and those contained in the National This section highlights the elements of the NHHRC’s part ofthewhole-of-healthsystemreform agenda. approaching theirendoflifeshouldbeasignificant through the NHHRC that the care of people Only in the last year has there been recognition 160 159 158 the CouncilofAustralianGovernments(COAG): negotiations with the states and territories through reports thathavesetthereform agendafor Century. TheCommissionhasproduced twokey meet theemerging needs ofAustraliansinthe21st be required to transform Australia’s health system to Reform Commission (NHHRC) to report on what will establishment of the National Health and Hospitals reform. The most significant of these have been the landmark initiatives to shape the nature of this and territories, there have been a number of health delivery system in cooperation with the states 2007 with a significant platform to reform Australia’s Since the election of the Rudd Labor Government in Guidance document. and these provide the broad context to this general directions of health reform are understood the whole health system, so it is important that the microcosm of the issues and challenges that face with theprovision ofcare attheendoflifeare a In most senses the issues and challenges associated National reformagendainAustralia Palliative Care Strategy In the decade since the development of the National national directions Section 6:Health careefomat t he endoflife—
Australian GovernmentNationalHealthandHospitals ReformCommission2009,op.cit.,pp.3. these havegenerallyfocusedonreforms withincare deliverysectorsorcomponentssuchaseducation andtraining. There have been a number of other major projects, all funded by the Commonwealth Government—APRAC, PCOC, Rural Palliative Care Program, PEPA, PCC4U—and Australian GovernmentDepartmentofHealth andAgedCare 2000,NationalPalliativeCare Strategy . 158 , there has been a lack of 159
end of life. end oflife. all of which are relevant to the care of people at the The report identifiesthree overarching reform goals, this caseinthefollowingterms: case for health reform is compelling. It summarises The Final Report of the NHHRC concludes that the NHHRC reformsandendoflifecare • delivered attheendoflife. could also have a profound effect on the way care is restructures andresources healthcare inthefuture, have amajorinfluenceonthewaygovernment All these reform agendas, to the extent that they will quality accreditation. developing a future national model for safety and on Safety and Quality in Health Care that is the work undertaken by the Australian Commission In parallel with these two streams of work has been and practiceinprimaryhealthcare inAustralia. 2009) thatprovides aroadmap toguidefuture policy 21st CenturyPrimaryHealthCare Strategy(August reform agendahasbeentherelease ofBuildinga Another significant element of the national health • these challenges. government. It is ill-equipped to respond to accountabilities between different levels of funding responsibilities and performance system with a complex division of Further, we have a fragmented health shortages, andinefficiency. concerns about safety and quality, workforce outcomes and access to services, growing care, unacceptable inequities in health demand for and expenditure on health challenges, including large increases in our populationchange.We facesignificant pressure, particularly as the health needs of many strengths, it is a system under growing While theAustralianhealthsystemhas beyond theBlameGame Reform Commission(June2009). Report of the National Health and Hospitals a Healthier Future For All Australians—Final 160 (April2008) • • • • 1. T • • • • • • • • • 2. – – Redesigning our health system to meet Redesigning ourhealthsystemtomeet timely accesstoqualitycare inpublichospitals: remote areas; support forpeoplelivinginruraland outcomes; redress ethnic disparities in health and care Torres StraitIslanderpeople: improve health outcomes of Aboriginal and relevant: this,fourprioritiesare particularly Within team modelsofcare. and integration of care through collaborative reshaping theMBStopromote thecontinuity comprehensive primaryhealthcare platform; care servicesandmedical servicestocreate a bringing together state-funded primary health ‘next generation’ofMedicare; chronic andcomplexhealth needs; including shared management of patients with better useofspecialistsinthecommunity, people withmore complex healthproblems; better continuityandcoordinated care for organisations; including establishing primary health care services andimproving accessinthecommunity integrating multidisciplinary primary health care the rightsetting; make sure that they can access the right care in redesigning healthservicesaround peopleto services; connect and integrate health and aged care areas; support for people living in rural and remote particular relevance: Within this, the following design elements have emerging challenges ackling majoraccessandequityissues.
particularly care inemergency departments. health workforce; particularly, train and recognise an Indigenous
• 3. • • • • of life: recommendations on caring for people at the end The NHHRC report also identified four specific health records. at thenationallevelandpersoncontrolled electronic health system’bringingarangeoffunctionstogether facilitate whole-of-system changes, such as a ‘one above there are a range of structural enablers that will In addition to the strategic elements highlighted • • – – – strengthened consumerengagementandvoice; relevance: this,three leversofreformWithin haveparticular system Creating anagileandself-improving health right of people to make decisions on their health including greater awareness ofthecommonlaw education and training of health professionals This will require a national approach to extended torelevant groups inthepopulation. residential aged care services, and then being implemented nationally, commencing with all advance care planning that is funded and home inthecommunity. availability oftheseservicestopeoplelivingat services that be directed to support more additional investment in specialist palliative care in residential agedcare facilities. settings, with special emphasis on people living services for all relevant patients across a range of strengthening access to specialist palliative care palliative care serviceproviders. collaboration andnetworkingwithspecialist greater educational support and improved support for dying patients. This will require and Services, to provide generalist palliative care Comprehensive Primary Health Care Centres primary health care services, including building the capacity and competence of the innovation andresearch. knowledge-led continuousimprovement, modern learningandsupportedworkforce;
building healthliteracy developing a new competency based empowering consumerstomakefully approach moves towards aflexibleandmultidisciplinary framework for education and training which informed decisions 55 Health care reform at the end of life 56 Health care reform at the end of life 161 • care ofpeopleattheend oflife: change, of which three are directly relevant to the The strategysetsoutfourprioritydirections for in thefollowingway: These are summarisedintheStrategy problems thatare inherent inourhealthsystem. that attempts to address a range of structural Strategy setsoutanambitioushigh-levelagenda Building a 21st Century Primary Health Care of lifecare Primary Care Strategy and end
Strategy, op.cit.,pp.9. Australian GovernmentDepartmentofHealth andAgeing2009.Building a 21st Century Primary Health Care System: A Draft of Australia’s First National Primary Health Care – – advance care planningdecisions. relates more specifically to end of life and complemented bysupportinglegislationthat noting that in some states/territories this is treatment, andtheirrighttodeclinetreatment, delivered across anintegratedsystem: services matchedtopeople’s needsand Improving accessandreducing inequity— influence care decisionsinotherservices. information flows and limited ability to by their GP, can be effected by gaps in on their own or, even when supported either be left to navigate a complex system particularly those with complex needs, can needs andcircumstances. Manypatients, providers involved, as much as their clinical particular condition and particular service of care candependonwhere theylive,their services theyaccessandtheresulting quality For individuals, the primary health care of theindividualpatient. broader health system to meet the needs within and across the various elements of the changing clinical practice) and to coordinate of disease, emerging technologies and demographic change, changes in the burden effectively to changing pressures (such as difficult for primary health care to respond than an integrated service system—it is operate asadisparatesetofservices,rather … primary health care in Australia tends to
more uniform quality care across actively addressing service gaps the country; subgroups; and the needs of specific population
161
• • • The frameworkisexpectedtobeused: public andprivate,primaryhospitalsettings. The frameworkspansthewholehealthsystem— strategies thataddress qualityandsafetyissues. to coordinate the wide variety of sector-specific developed by the ACSQHC to provide a mechanism The national quality and safety framework has been of lifecare—focus onquality Quality in Health Care ( A • •
ustralian Commission for Safety and – – – – – – quality improvement. how they might best contribute to safety and managers, researchers andpolicy-makersabout to promote discussion with consumers, clinicians, goals forhealthserviceimprovement; and investments for safety and quality and designing quality improvement activities, reviewing to provide amechanismto refocus current and qualityplans; as thebasisforstrategicandoperationalsafety Better managementofchronic conditions: driving transparency andqualityimprovement: mechanisms for measurement and feedback accountability—a framework and improved Improving quality, safety, performance and
flexible responses tailored to local service service delivery and funding arrangements individuals to have enough information about individuals tohaveenoughinformationabout services that include comprehensive and access to information on safety, quality and patient care basedonbestavailableevidence; systems andneeds; supporting flexibleservicedeliverymodels. make informedchoicesabouttheircare; health providers, facilities and services to tools. support includingthrough diagnosticsupport and across providers, andself-management coordination, sharing of information within multidisciplinary team care, ‘as needed’ care health care outcomesimprovement. performance willdrivecontinuousquality A CSQHC) and end
• ’Consumer focusedcare’ 162 relevant topalliativeandendoflifecare range ofstrategies,somewhichare directly eachofthesethere arehealth services.Within a three keyareas ofdirection (calledconstructs)for The national quality and safety framework proposes
•
Framework. Australian CommissiononSafetyandQuality inHealthCare 2009,Discussion Paper on achieving the directions established in the proposed National Safety and Quality – – – – – – – – – – – – health care forpatients.Thiswouldinvolve: Develop service models which improve access to Increase healthliteracy. Thiswouldinvolve:
developing incentives and models that developing incentivesandmodelsthat use of information technology to support use ofinformationtechnologytosupport designing training and service models to establishing formal links and support establishing formallinksandsupport reducing the need for people to access health maintain affordability ofhealthcare, especially supporting patients and consumers to take making essential allied health and dental training clinicianstorecognise that screening forthosewithlower healthliteracy; making facilitatedsupportgroups available; ensuring educational curricula contain they needit; enable patients to access health care when access toqualitycare; in ruralandremote areas; provide access to skilled health professionals and ruralservices; mechanisms between specialist tertiary units focus onthesocialdeterminantsofhealth; through targeted prevention programs that complex conditions; for those patients with multiple, ongoing and them; obtain and use information that is available to greater responsibility for their health care and service availabletoall. support patientswithlowerhealthliteracy; safer and assists clinicians to identify and encouraging questions makes health care basic levelofhealthliteracy. modules thatwillhelpstudents achievea 162 :
•
•
•
– – – – – – – – – – – – involve: about their care and plan their lives. This would Involve patients so they can make decisions involve: competent, appropriate and safe. This would Provide care thatisculturallyresponsive, Enhance continuityofcare. Thiswouldinvolve:
ensuring patients, consumers and providers clearly and compassionately communicating providing patients with written records of providing patientsandconsumerswith teaching essential skills for communicating ensuring that health services have effective organising primary care services so that all funding models and contracts providing clinicians with education in cultural making cultural advice and interpreter services ensuring training opportunities for clinicians paying special attention to the care of the outcomes; evidence, patientexperiencesand decision making. This includes information on have accesstotrustedinformationsupport care andrecovery; with patients about what will happen during consultations andtake-homeinformation; decision makingandexplaincare processes; visual aidswhennecessarytosupport meet their needs, and using interpreters and information inlanguagesandformatsthat curricula; and shared decision making in health care safety; and carer feedback. mechanisms inplaceforpatient,consumer available toclinicians; and linguisticallydiversepopulations; to workwithIndigenousandotherculturally advice whenitisneeded; regular doctor or place of care and phone patients andconsumerhaveaccesstoa vulnerable. to supportaccess.
57 Health care reform at the end of life 58 Health care reform at the end of life •
•
• ’Driven byinformation’
•
– – – – – – – – – – – – – This wouldinvolve: Provide casemanagementforcomplexcare. involve: Facilitate patient-centred models. This would of care. Thiswouldinvolve: Reduce unjustified variation in the standards quality. Thiswouldinvolve: Collect and use data to support safety and
ensuring all health professionals are focused routinely using multidisciplinary models embedding guidelinesinclinicalpractice; systematic monitoring of compliance with making available a comprehensive suite ensuring that guidelines are up-to-date, ensuring thatguidelinesare up-to-date, ensuring individual practitioners have timely ensuring individualpractitionershavetimely obtaining endorsement for guidelines public and private health services analysing ensuring that patients with multiple, ongoing considering case management as an essential fully exploiting electronic communication working with other agencies to reduce the case management; and complex conditions receive appropriate component ofclinicalcare; to supportcare; experiences forpatients; on achieving the best outcomes and mental illness. impact ofsocio-economicdisadvantageor of care. guidelines andsafetyprotocols; of Australianguidelines; disseminated; relevant indicatorsandthattheyare actively authoritative andaccessible;thattheycontain patients; care theyprovide andtheoutcomesoftheir access torelevant dataabout thequalityof from majorprofessional bodies. systems ofcare; their own data to monitor quality and improve
• •
•
– – – – – – – – – – – This wouldinvolve: Learn from patients’andcarers’ experiences. safety andquality. Thiswouldinvolve: Encourage and apply research that will improve interventions. Thiswouldinvolve: Continually monitor the effects of health care
policy makers accessing national data policy makersaccessingnationaldata regularly conducting, reporting and using all clinical registries working towards offering dedicating a substantial quantum of medical piloting patientexperiencesurveysthat regularly determining quality research enhancing the organisation of care ensuring clinical trials are of sufficiently long making methods for successful linking data from existing data sets to enable accompanying approval formedications and ABS data collections; and ABSdatacollections; case-mix data collections, clinical registries collections andindicatorsincludingMBS,PBS, patient’s experienceofhealthcare; patient experience surveys to improve the timely institutionalorprovider leveldata. evaluation research; priorities and to implementation and research fundingtosafetyandquality interactions across different settingsofcare. measure the quality of the patient journey and guide funding; priorities andusingtheto makers andresearch users; program thatinformsfunders,policy delivery through asystematicresearch in Australia; needs of people who receive these treatments duration and designed to meet the specific investigation. research findings the subject of detailed implementation and spread of new clinical be trackedovertime; treatment outcomes of Australian patients to outcomes. collect dataabouttheireffects andpatient and treatments withaplantosystematically
164 163 and endoflifeservicesare thefollowing: foundation for long-term improvements in palliative The most significant initiatives that lay the structural a NationalHealthandHospitalsNetwork. reports and initiatives, through the development of a process of responding to the above health reform by the Australian Government, in April 2010 begun The Council of Australian Governments (COAG), led response Agenda toNationalReform Council of • ’Organised forsafety’ introduction ofMedicare’. structural reforms to the health system since the reforms promise to be ‘the most far-reaching ibid. pp.iii. Australian Government2010,ANationalHealthandHospitalsNetwork:Further InvestmentsinAustralia’s Health. – – involve: comprehensive, appropriate care. This would Restructure fundingmodelstosupport
progressively changing funding structures developing sophisticated analyses of health and toencourageeffective care; to address knownsafetyandqualityissues, models. analyses) to support the restructure of funding care effectiveness (includingeconomic A ustralian Governments 164 163 These
• •
• • – – – – Services to: service providers includingAboriginalMedical communities, alliedhealthprofessionals and organisations withstrong linkstolocal the establishmentofprimaryhealthcare services inAustralia; responsibility for GP and primary health care the Commonwealthtakingfullfundingandpolicy services inagedcare. improving incentives for GPs to provide more areas; allied health professionals in rural and regional professionals, including GPs and specialists and major investments to train more health
improve access to services and drive facilitate alliedhealthcare andothersupport identify groups of people missing out on work with hospital networks to assist patient work withhospitalnetworkstoassistpatient they need; conveniently access the full range of services care services to ensure that patients can integration across GP and primary health for peoplewithchronic conditions; area needsandrespond tothesegaps; primary health care, or services that a local transition inandoutofhospital.
59 Health care reform at the end of life 60 Health care reform at the end of life of endlifecare integratin g sytem movin health caresytem Guidance forth Section 7 g towa
r d s an
61 Guidance for the health care system 62 Guidance for the health care system life care 168 167 166 165 to achievegood-qualitycare attheendoflife. These are aligned with the reforms that are required • • • • • themes include: care at the end of life for all. These common reform in deliveringconsistentservicestoachievequality particular resonance when looking at the challenges three broad andoverlappingareas ofreform havea The common themes that emerge across these life care with national reform processes A services towards aconsumerneedsfocus. health of delivery the reorient to consumers and strong determinationbyhealthprofessionals state andterritorygovernmentsthrough a concerted cooperationbetweenCommonwealth, through term medium-to-long the in achieved be only can that system health the within change structural fundamental a require will reforms of sets these in outlined directions the of many in theprevious section.Oursectorrecognises that described processes reform parallel of sets three the in grounded well be to needs life of end the around achievingourvisionforintegratingcare at provided be can that guidance any that clear is It movin Section 7:Guidaneforthealth caresytem— ligning guidance on palliative and end of Australian CommissiononSafetyandQuality inHealthCare 2009,op.cit. Murray, SAandSheikh,A2008,op.cit. Department ofHealthNHS2008,op.cit.,pp.10. Advance PalliativeCare 2008op.cit. Good, P2003,‘AdvancesinPalliativeCare relevant tothewiderdeliveryofhealthcare’. MJA ; vol. 179, pp. S44–S46; Crawford, GB and Price SD 2003, op. cit.; Center to evidence andcontinuousimprovement. improving qualitybasedon information, multidisciplinary approaches; health care is a priority; particularly involving building capacityandcompetenceinprimary management ofchronic conditions; continuity of care is critical; particularly in the way across sectoralboundaries; services should be delivered in an integrated those services; including the most appropriate setting to receive services needtobematchedpeople’s needs, g towa r d s an inte
gr • • • established byACSQHC issues the three broad priorities or constructs relates closely to, but modifies to suit end of life integrated theseintoanoverarching frameworkthat national reform process directions. We have shows thealignmentbetweenthree major Figure 4provides anintegratingframeworkthat health systemonanumberoflevels. care settings, provide an exemplar to the rest of the multidisciplinary team and across a range of health by definitionshouldalreadya bedelivered within of occasionsthatgoodpalliativecare services,which regard With tothisithasbeenobservedonanumber aims topositivelycontributetheirachievement. be aligned with these whole-of-system directions and The Guidance that is provided in this document will vulnerable people litmus test for how we as a society care for all sick and it isoftensaidthatthewaywecare forthedyingisa right’ needsnoapology. atin responsibility forwell-coordinated qualitycare. funding models recognise and reward taking Organisational structures, work processes and priorities inthedesignofhealthcare. This means that quality and safety are high ‘Organised forqualityand safety’ understanding consumerandcarer experiences analysed to support improvements and in outcomes of these. Data is collected and community; how services are provided; and the understanding about; end of life issues in the This means enhancing knowledge and ‘Driven byinformation’ optimise theconsumerexperience. providers. Processes of care are designed to consumers, carers and their health care preferences. It means a partnership between and responsive to individual needs, values and This means providing care that is respectful of ‘Consumer andcarer focused’ g
s y 166 s and hence prioritising ‘getting it andhenceprioritising‘gettingit tem of end of 167 168 asfollows: 165 Furthermore, Furthermore,
Figure 4:Aligningnationalreformdirections related to endoflifecare Key: Key: Consumer and Consumer and carer focused Actively address servicegaps and Involve patients so that they can Involve patientssothattheycan make decisionsabouttheircare providers, facilities and services needs ofspecificpopulations Individuals who have enough Individuals whohaveenough Timely accesstoqualitycare Timely Promote culturallysafecare in publichospitalsandEDs Support for people in rural Support forpeopleinrural to makeinformedchoices information about health information abouthealth Strengthened consumer engagementandvoice Advance care planning Increase healthliteracy for Indigenouspeople Improving outcomes in therightsetting Services matched and remote areas Access right care Facilitate patient to peopleneeds NHHRC centred models
Strategy Primary Care Collect and use data to support Collect andusedatatosupport safety, qualityandperformance Encourage and apply research information Reduce unjustified variation Reduce unjustifiedvariation of healthcare interventions Knowledge-led continuous Knowledge-led continuous Patient care based on best patient safetyandquality improvement, innovation Access to information on Access toinformationon riven by Driven by that willimprove quality in thestandards ofcare and carers’ experience to driveperformance More uniformquality Learn from patients’ Monitor the effects available evidence and research
ACSQHC
Building capacity and competence Better continuityandcoordinated Comprehensive multi-disciplinary responses tailored tolocalneeds Strengthen accesstospecialist arrangements support flexible care for people with complex Integrating multi-disciplinary Service delivery and funding Restructure funding models primary healthcare services care andcare coordination rganised Organised Provide case management and safety Enhance continuityofcare to supportcomprehensive for quality for quality workforce development Better use of specialists of primarycare services palliative care services Modern learning and Modern learningand in thecommunity in thecommunity appropriate care health problems of complexcare Care Specific NHHRC Palliative
63 Guidance for the health care system 64 Guidance for the health care system 169 • • • comprised ofthree keyconstructs: The national end of life Guidance framework is framework N section. constituent Guidance elements developed in this be usedtoframetheGuidancedomainsandtheir The ACSQHC’s overarching framework will also ational end of life care guidance constructs and11domains Figure 5:NationalendoflifeGuidanceframeworkcomprisingthree key Australian CommissiononSafetyandQuality inHealthCare 2009,op.cit. ‘Organised forqualityandsafety’. ‘Driven byinformation’ ‘Person andcarer focused’ Invovled and supported Invovled andsupported to make fully informed to makefullyinformed ulturally competent, Culturally competent, carer focused appropriate andsafe Patients empowered Needs-based care Person and Person and decisions carers
knowledge translation knowledge translation quality improvement Supported research, and used to support and usedtosupport information and empowered riven by Driven by nowledge-led Knowledge-led ata collected Data collected and exchange improvement
community continuous continuous Informed Informed patients and their families. patients andtheirfamilies. the delivery of quality care at the end of life to should be considered preconditions to achieving key system-levelchangesthatare required andthat developed within each of the domains articulate the constructs and its domains. Guidance elements Figure 5 below represents the Guidance framework guidance elementswithintheframework. each domain. There are 11 domains and 61 there are a number of guidance elements within Each construct contains a number of domains and Framework. ACSQHC proposed NationalQualityandSafety These constructs have been derived from the
169 well coordinated care rganised Organised and safety for quality for quality Appropriately and effective workforce optimised optimised resourced eamless, Seamless, Flexible, Flexible,
their care teamisparamount. Oneofthemajor communications between patients, families and The importanceofdevelopingeffective fully informeddecisions Guidance Domain 1: Patients empowered to make four domainsasfollows: The first construct, ‘Person and carer focused’, has Guidance elementsinthissection. factors are highlighted throughout the various integrated person-focused outcome. Most of these either facilitate or hinder the achievement of an elements that make up a system of care that will that it is the inter-relationships between various 173 172 171 170 care. contexts also greatly facilitates person focused person overtimeintheirfamilyandcommunity carers and health care providers. Knowing the achieve apartnershipbetweenconsumers,their We would also add to this list the necessity to person focused fundamental inthedevelopmentofanintegrated, Putting individualsatthecentre ofcare issimilarly Care that is ‘Person and carer focused’ • • • • • • • • the abilitytoachievepatient-focusedcare: Institute has identified eight factors that relate to system todeliverperson-focusedcare. ThePicker Many factors impact on the ability for any health the endoflifeforall.
Stange, KCandFerrer, RL 2009.‘TheParadoxofPrimaryCare’ AnnFamMed;vol.7,pp.293–9. Commonwealth DepartmentofHealthandAgeing 2009.PrimaryHealthCare ReforminAustralia,op.cit.,p.42. significant relationship. Patient-focused or patient-centred care in the context of this paper includes the broader family and carers that provide support and with whom the patient has a Australian GovernmentDepartmentofHealth andAgeing2009.PrimaryHealthCare ReforminAustralia,op.cit.,pp.42. designing healthsystemchanges. carers at the centre of care is fundamental in Putting individuals, and their families and access tocare. transition and continuity; and involvement offamilyandfriends; anxiety; emotional support and alleviation of fear and physical comfort; information, communicationandeducation; coordination andintegrationofcare; and expressed needs; respect for patient-centred values, preferences 173 These factors highlight the self evident fact Thesefactorshighlighttheselfevidentfact 171 system that delivers quality care at systemthatdeliversqualitycare at 172 172 170 or circumstances ofaperson’s illnesschanges. preferences might change, particularly as the phase planning process alsoneedstorecognise that directive) or an informal process. Any advance care either a formal process (such as an advance care needs to occur in each care setting and can be understanding of people’s care preferences and having such discussions, will facilitate a mutual provided by the care team that is competent in integrated and person-focused system, information stage in the patient journey and in any setting. In an facilitate adiscussionaboutthegoalsofcare atany debilitating disease or terminal illness. It should be entered into at an early stage of a progressive Ideally, advance care planning discussions need to community awareness aboutdeathanddying. It is linked with the broader imperative of raising control ofdecisionsthataffect anindividual’s care. team thatcanbeusedasamechanismtotake patients, their families and carers and the heath care provides foranongoingconversationbetween been advance care planning. Advance care planning communication tools to emerge in recent years has 1.3 1.2 1.1 Specific guidanceelements: decisions to makefullyinformed Guidance Domain1:Patientsempowered their life. they need as they approach the end of location and type of care and resources people to make decisions about the education andinformationtosupport evidence-based, consumer-friendly process to develop and disseminate Develop a nationally led, systematic and agedcare systems. advance care planning across the health approach to the implementation of Develop and implement a national stages ofalife-limitingillness. planning commencingfrom theearly and carer involvement in end of life care procedures andtoolstosupportconsumer Develop andimplementpolicies,
65 Guidance for the health care system 66 Guidance for the health care system 179 178 177 176 175 174 team. with the contextual knowledge of a primary care specialist palliative care providers in conjunction plans tobedevelopedandimplementedby patients with complex symptoms will require care exacerbations of symptoms, while the minority of require specialist service input to deal with sporadic multidisciplinary primary care team. Others will and beingabletobedealtwithbya the majority of patients not having complex needs services should be tailored to individual needs with match theirneed.Itisnowgenerallyacceptedthat the end of life should have access to services to Patients andcarers whowouldbenefitfrom care at Guidance Domain2:Needs-basedcare both malignantandnon-malignantdiseases. standardised eligibilityand discharge criteriafor sub-acute and acute sectors and the use of collaborative approaches across primary, aged, palliative care requires the development of chronic disease specialist teams. Ensuring access to and pathways supported by additional training of incorporated into disease management frameworks Management of end of life care needs to be equally benefitfrom palliativeandendoflifecare. range of progressive chronic conditions would also Further, there is recognition that people with a wide at alltimes. guides the delivery of services across all sectors and with complexneedsmayrequire acare planthat required by service providers. Patients and families higher the degree of responsiveness that may be ibid. Department ofHealthNHS2008.op.cit.,pp.107. Irish HospiceFoundation2008.op.cit.,pp.3. Irish HospiceFoundation2008.op.cit.,pp.38. Mitchell, GKetal.2008.op.cit. Palliative Care Australia2005.AGuidetoPalliativeCare ServiceDevelopment:Apopulationbasedapproach, op.cit. 174,175,176 The more complex the needs, the 177 health care team of life.Inmanyrespects theyare ‘co-workers’ina health system to deliver high-quality care at the end Carers play an integral role in the ability of the carers Guidance Domain 3: Involved and supported various stagesalongtheendoflifepathway. care planssoastoinvolve andsupportcarers at these intoaccountinthedevelopmentofpatient well-performing systemneedstobeabletake needs dependingonindividualcircumstances anda the person they are caring for. Carers have varying variety of ways both during and after the death of 2.5 2.4 2.3 2.2 2.1 Specific guidanceelements: Guidance Domain2:Needs-basedcare and agedcare settings. pathways foracutecare, community implementation of end of life care systematic approach to the Develop andimplementastandardised, approaching theendoflife. and the common trajectories of people that align consumer need Develop disease cluster referral triggers specialist services. of life needs across primary, aged care and consistent holistic assessment of end Develop andimplementstreamlined, and carer needsattheendoflife. assessment toolstodeterminepatient Introduce standardised, validated the endoflife. for the recognition of people approaching the developmentofcriteria Develop a national systematic approach to 178 and need to be supported in a andneedtobesupportedina
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provision ofservices. professional and interpersonal relationships; and the provision ofinformation,truth tellingandconsent; understandings about death and dying; the influence and frame responses to beliefs and recognising the way in which culture and language in culturallycompetentandsafepracticeby There is a need for health care providers to engage appropriate and safe Guidance Domain4:Culturallycompetent, 184 183 182 181 180 profile oftheconsumer base intheirservice to an understanding of the cultural and linguistic of life specialist and primary care teams that is linked competence andresponsiveness leadership and accountability for cultural 3.4 3.3 3.2 3.1 Specific guidanceelements carers Guidance Domain3:Involvedandsupported 3.7 3.6 3.5 Australian GovernmentDepartmentofHealth andAgeing2009.PrimaryHealthCare ReforminAustralia,op.cit.,pp.126. an AboriginalHealthWorker onhospitalisedAboriginalexperiences:lessons from cardiology’. AustralianHealthReview,vol.33(4),pp.549–57. McGrath, PDetal.2007.‘ThecaseforAboriginal HealthWorkers inpalliative care’. AustralianHealthReview , vol. 31(3), pp. 430–9; Taylor, KP 2009, ‘Exploring the impact of SA Health2009.opcit. Australian GovernmentNationalHealthandHospitals ReformCommission2009,opcit.,pp.29. SA Health2009.op.cit.,p.58. extent they wish to be and subject to decisions and communications to the Ensure thatcarers are engagedincare of carers. to routinely assess and support the health Develop and implement appropriate tools someone approaching theendoflife. assist carers sustaintheirrole incaringfor at home respite care arrangements to Provide access to residential and flexible to timelyadviceregarding endoflifecare. educational programs, informationthe developmentanddisseminationof and access Support thevitalrole ofcarers through the consentofpatient. for allcarers andfamilies. Provide accesstobereavement support approaching theendoflife. their role providing care to someone resources to enable them to undertake Ensure that carers are provided with reflected andacknowledged. life care are adequatelyandaccurately needs and experiences related to end of evaluation to ensure that their specific of policy and services development and Directly consult with carers in the processes 180 A key aspect of this is 181 within local end
including thetertiarytrainedsector. of Indigenouspeopleinthehealthworkforce, There is also a need to increase the representation when associatedwithutilisationofthesekeyroles. improving access to care and patient experiences beginning to demonstrate significant success in and aboriginal health workers with research a greater recognition of the key role of ethnic liaison workforce to meet their needs. This needs to include a fundamental shift in the capacity of the health populations and Indigenous communities, requiring to immigrant,refugee, andasylumseeker effectively address the delivery of end of life services Of particularimportancewillbetheneedto needs tobeintegratedintolearningatalllevels. Cultural competence and culturally safe practice asylum seekerandIndigenouspopulations. catchment, whichmayincludeimmigrant,refugee, 4.6 4.5 4.4 4.3 4.2 4.1 Specific guidanceelements appropriate andsafe Guidance life care. communities tosupportimproved endof health professionals and services with local Indigenous healthworkerstoconnect Support the strengthening of the role of approaching theendoftheir life. for Indigenous Australians who are mechanisms tosupport‘returncountry’ Ensure there are policies, procedures and and Torres StraitIslanderpeople. and care needs at the end of facilitatelife for Aboriginal understanding of cultural non-Indigenous healthcare providers that differences Build relationships between Indigenous and and accesstotrainedinterpreters. resources in a range of community languagesculturally appropriate health information Support thedevelopmentandprovision of and and endoflifecare. and practices that surround death, dying different cultural and ethnic values, beliefs processes ofcare respect andreflect Ensure that policies, procedures and programs atalllevels. incorporated into multidisciplinary educationand safety related to end of life care is Ensure that cultural and spiritual competence D omain 4: Culturally competent, 184 184 182
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67 Guidance for the health care system 68 Guidance for the health care system of Australianshavelowlevelshealthliteracy. 188 187 186 185 amongst the general community and consumers will Promoting open discussion of death and dying decisions’. and services needed to make appropriate health process and understand basic health information to whichindividualshavethecapacityobtain, end of life. Health literacy is defined as ‘the degree about their health care needs as they approach the support consumers to make informed decisions Raising awareness and improving health literacy will person andcarer centred care. systems to meet their needs will result in more fully participant partners in the delivery of care community capacity to be effective advocates and development and quality review and building Strengthening communityparticipationinpolicy experiences andclinicaloutcomes. involve patients in their health care improve Interventions designed to inform, educate and community Guidance Domain 5: Informed and empowered there are fourdomainsasfollows: In thesecondconstruct,‘Drivenbyinformation’, knowledge. the ongoing generation of research based that drivesimprovement andtheneedtosupport the translation of data and evidence into knowledge collection anduseofdatatosupportimprovement, information to consumers and the community, the Guidance construct focuses on the key areas of be used to guide and support decision making. This evidence and consumer focused literature that can Information includes all forms of data, research high-quality accessiblecare. these needsiscentraltoanabilitydeliver needs. Providing accesstoinformationmeet information have all makers policy and researchers care systemasconsumers,carers, clinicians, health the in levels all at exist needs Information Care that is ‘ Australian CommissiononSafetyandQuality inHealthCare 2009,op.cit. , p20. ABS 2008.HealthLiteracy, Australia,2006,Cat.No.4233.0,Canberra. Fineberg, H2004,HealthLiteracy,InstituteofMedicine,NationalAcademiesPress. Culter, AandEllins,J2007,‘Effectiveness ofstrategiesforinforming,educatingandinvolvingpatients’.BMJ,vol.335,pp.24–7. 186 Ithasbeenreported that 59percent D riven by information’ 185 185 187 high-quality care topeoplewhoare dying. professional barriers to the delivery of appropriate instrumental in reducing legal impediments and people as they approach the end of life and will be create a greater understanding of the needs of health and legal professionals will also serve to choices at the end of life. Open discussion among decision making regarding care preferences and support their capacity to become involved in patients andtheirfamiliesisvital. quality ofcare theyprovide andtheoutcomesfor services havetimelyaccesstorelevant dataaboutthe drive change.Ensuringhealthpractitionersand sustainable approach tosupport improvement and critical aspect of achieving an effective systematic and professionals inthedevelopment ofrelevant dataisa Engaging jurisdictions,servicesandindividualhealth support qualityimprovement Guidance Domain 6: Data collected and used to 5.1 Specific guidanceelements: empowered community and Guidance Domain5:Informed 5.3 5.2 a) voice in: Strengthen consumer participation and b) c) programs. professional, education and awareness dying through health and legal Promote open discussion of death and initiatives inendoflifecare. literacy and community capacity building community awareness, consumer health strategy that guides and integrates Develop a national awareness raising end of life policy and service end oflifepolicyandservice community capacity building initiatives; community capacitybuildinginitiatives; quality review. development; and 188 192 191 190 189 • • • working inparallel: the three keylevelsofdataandinformation needs In broad termsasystematicapproach wouldcover 6.5 6.4 6.3 6.2 6.1 Specific guidanceelements: to supportqualityimprovement Guidance Domain6:atacollectedandused Australian GovernmentNationalHealthandHospitals ReformCommission2009,opcit.,pp.140 for Healthcare Improvement. Massoud, MRetal.2006,AFrameworkforSpread: From localimprovements forsystem-widechange, IHI Innovations Series white paper, Cambridge, Massachusetts: Institute Palliative Care Australia2005.Standards forproviding qualitypalliativecare forallAustralians(4thEdition)op.cit. Palliative Care OutcomesCollaborative2009,op.cit. assess clinicalperformance. improve clinical care to patients and carers and Clinical data—important to provide evidence to management; access, equity, quality and performance purposes andjurisdictionalserviceplanninge.g. importance toserviceforqualityimprovement Service level data—activity and outcome data of inform nationalpolicy; System level data and information—necessary to at clinical,nationalandjurisdictionallevel. various data collections and repositories Enable endoflifedatalinkagesbetween held standardised measurement tools. Develop andsupporttheuseofnationally improvement cycles. to expeditequalityand services and clinicians in a timely fashion compared andprovided backtoclinical care attheendoflifeiscollated, Ensure that data on safety and quality of performance inendoflifecare. support improvement andmonitor and service level activity and outcomes to Collect anduseroutine dataonpatient and thewidercommunity. primary and aged care), funders, clinicians territory), clinicalservices(specialist, (Commonwealthandstate/ government life care ofthedifferent stakeholders— Inventory the data needs related to end of of innovationandevidencedbasedcare. and strategic approach to the diffusion and spread System-wide improvement requires an integrated unjustifiable variation. improvement and reduction in unacceptable and these issues will bring about system level implementing improvement actions to address Understanding the causes of variation and outcomes experiencedbypatientsandcarers. is considerable unjustified variation in palliative care Outcomes Collaborative (PCOC) suggests that there outcomes data collected via Palliative Care the best quality care. Australian palliative care across Australia means that not all patients receive services are resourced, structured and delivered Unjustifiable variation in the way that end of life care improvement Guidance Domain7:Knowledge-ledcontinuous delivering care topeopleattheendoflife. reasonable expectations of quality for all services The national palliative care standards set out the 7.4 7.3 7.2 7.1 Specific guidanceelements: continuous improvement Guidance Domain7:Knowledge-led palliative and end of life care. best practiceclinicalguidelinesfor disseminating evidence and implementing Reduce unjustifiedvariationinpracticeby approaching theendoflife. the needsandeffective care ofpeople of evidence and knowledge in relation to support the translation and diffusion Develop andimplementstrategiesthat identified qualityandsafetyissues. and the actions taken in response to quality ofcare attheendoflife Report on strategies to improve safety and community care, agedcare andacutecare). (specialist palliative care, primary and for end of life care across all care settings performance against national standards Implement, monitor and report on
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69 Guidance for the health care system 70 Guidance for the health care system policy makers. researchers, health care professionals and knowledge transfer methodologies between commitment to invest in the development of 198 197 196 195 194 193 effective andpragmaticmanner. transfer of evidence into everyday practice in an methodologies that can encourage knowledge The challenge is to develop a range of processes and repository ofevidenceavailablethrough Caresearch. support thisprocess. We already haveanexcellent outcomes. Thisrequires structures andprocesses that are toeffect real improvements inconsumerandcarer develops tohealthprofessionals atthecoalfaceifwe improvement istheabilitytogetevidenceasit A critical aspect of knowledge-led continuous knowledge translationandexchange Guidance Domain8:Supportedresearch, 8.6 8.5 8.4 8.3 8.2 8.1 Specific guidanceelements: knowledge translationandexchange Guidance Domain8:Supportedresearch,
Palliative Care Australia2008,PalliativeandEndofLifeCare GlossaryofTerms Edition 1,opcit.. Harris, Metal.2009,op.cit. Irish HospiceFoundation2008,opcit.,pp.11 Australian GovernmentNationalHealthandHospitals ReformCommission2009,op.cit.,pp.103. Australian CommissiononSafetyandQuality inHealthCare 2009,op.cit . clinical andservicebasedpalliativecare teamscanlearnfrom eachotheranddrawonevidence specificexpertisetofacilitatesuccessfulimprovement andchange. The uptake of breakthrough collaborative methodologies developed by the Institute for Healthcare Improvement is one way of creating a practical structure through which health care professionals andpolicymakers. transfer methodologies between researchers, Invest in the development of knowledge clinical forums,healthroundtables etc. participation inbreakthrough collaboratives, health service and health professional palliative and end of life care by supporting Enhance the spread of innovation in reported outcomesrelated toendoflife. collection andreporting ofpatientandfamily Develop anationalapproach tothe services andclinicians. outcomes related to end of life to health regular dissemination of research Provide dedicated resources for the care. service research in palliative and end of life Prioritise and invest in clinical and health life toexpediteitstranslationintopractice. knowledge and research related to end of and disseminationofclinicalevidence/ Adopt a national approach to the synthesis 193 192 Thisrequires a
responsive servicesfocused onpopulationneeds. services is necessary to achieve sustainable and care services,agedcare servicesandspecialist partnerships betweenlocalandregional primary Furthermore, the development of strong the designofhealthcare. Quality andsafetymustbeseenasahighpriorityin Care that is ‘ primary healthcare teams. consultancy supportandadvicetopatientstheir role in the assessment, complex care planning and to shared management of care and have a critical need. Evidence suggests that specialists are central by specialist teams on the basis of complexity of responsibility being borne by the GP, supplemented around a primary care focus with the primary medical a highvaluehealthcare systemneedstobebuilt professionals. There iswide-spread agreement that linkages between sectors and health care and a shared understanding of pathways to provide life care. Foremost is the development of protocols developing well-coordinated and seamless end of There are anumberofcriticaldimensionsto coordinated care Guidance Domain9:Provide seamless,well- there are fourdomainsasfollows: In theconstruct,‘Organised forqualityandsafety’, care—as isasupportiveworkenvironment. is necessary for the provision of high-quality, safe experience. A well-trained and supported workforce are encouragedtoreflect onandlearnfrom their improves when individuals, organisations and teams improve qualityandsafetyofcare, andcare responsibilities for quality and safety. Education can and enact their individual and collective that clinicians, managers and governments recognise Organising care to improve safety will also require approaches tofunding. redesign ofmodelscare, workforce and care attheendoflifewillrequire evaluationand O rganised for quality and safety’ 194 195,196 Improving thequalityof
for whole-of-system person focused health reform. individualised care and providing a valuable model facilitating a more holistic approach to developing also forarangeofpsychosocialsymptoms, provide supportnotonlyforphysicalsymptoms,but Importantly in palliative care, interdisciplinary teams committed individuals. supported by the efforts and leadership of a key determinant of successful collaborations quality of personal interactions between members is both published and anecdotal evidence that the clarifying roles and responsibilities. It is clear from critical to creating positive team dynamics, and Effective communication between team members is presupposes theoperationofateamapproach. of care leadingtoabetterqualityoflife. duplication ofinvestigationsandenhancecontinuity improve treatment access,prevent unnecessary care planning,streamline referral processes, Well functioning interdisciplinary teams facilitate 202 201 200 199 complex cases. strategy to effective care in chronic and more a teamandisincreasingly beingrecognised asakey a range of health professionals working together as Well-coordinated, person focused care also requires structured around thepatientjourney. and partnerships would be based on the need to be recommendations ofNHHRC.Thesedeliverymodels changed accountabilities, along the lines of the changed financing/incentive arrangements and change willbeneededinvolvingserviceredesign, emerging in the Australian context, a systematic While there are examples of such partnerships Tang, M2009,op.cit. Harris, Metal.2009,op.cit. Good, P2003,op.cit. Tang, M2009,op.cit. 197 Palliativecare, bydefinition, 201,202
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Guidance 9.9 9.8 9.7 9.6 9.5 9.4 9.3 9.2 9.1 Specific guidanceelements: well-coordinated care are credentialed intheiruse. care at the end of life, and ensure that staff care settings where needed to provide medication and equipment in appropriate Ensure the availability of affordable services. with navigation, transition and utilisation of complex needsattheendoflifetoassist coordination of care for all patients with nomination of a case coordinator for the Implement strategies, including the specialist palliativeservices. between primary care, aged care and Establish referral andadvicenetworks in ruralandremote areas. support for clinicians, patients and families networks) to enhance communication and Utilise emergingtechnologies(e.g.telehealth facilities. dying at home and in residential aged care services tosupportthecare ofpeople Expand specialist palliative care outreach with role andcapabilityframeworks. within defined regions and in accordance Network specialist palliative care services their life. patients who are approaching the end of specialist palliativecare servicesfor Ensure 24/7accesstoprimarycare and people approaching theendoflife. to supportneeds-basedservicedeliveryfor services, and specialist palliative careservices, services disease specific organisationsbetween and primary care providers, aged careDevelop strong partnershipsandnetworks their life. support to people approaching the end of services to provide end of life care and integrated primary and community care Build the capacity and competence of D omain 9: Provide seamless,
71 Guidance for the health care system 72 Guidance for the health care system postgraduate healthcare curricula. should be built into all undergraduate and training in palliative care principles and practice provide care at the end of life. This means that basic require, as a minimum, knowledge and skills to baseline goal is that all health care professionals services forthoseattheendoflife,itfollowsthata important part of our health system is providing As death is a normal part of the life cycle and an 206 205 copingwithdyingandbereavement. • Variants ofthesedomainsare alsofoundinpostgraduateand CPEcourses. optimisingfunctioninpalliativecare • principlesforclinicalassessmentandintervention inpalliativecare • communicationinpalliativecare • principlesofpalliativecare • 204 203 consumer qualityandsafetystandards. health servicedeliverystructures, andthatmeet both changing population needs as well as evolving to supporttheemerging modelsofcare thatreflect workforce with skills and competencies that are able A keyprincipleistheimperativeofdevelopinga continuous learning,research andinnovation. empowerment to take on the challenge of workforce will also require support and competencies. Building up the capacity of the development of palliative and end of life care Such a framework would support the future • • professionals that: framework for education and training of health dying. TheNHHRCisrecommending anew skills, attitudes and behaviours related to care of the professionals tohavethenecessaryknowledge, care at the end of life will require health care Moving towards an integrating system to provide effective workforce Guidance Domain 10: Flexible, optimised and The Victorian DepartmentofHuman Services hasdevelopedstandardsThe Victorian forpalliativecare volunteersthatcanbeutilisedastemplateforanationalapproach. Cairns, WandYates, PM2003,‘Educationandtraininginpalliativecare’. MJA;vol.179,pp.S26–S28. The followingfivedomainsare beingutilisedaspartofthePCC4Uprogram targeted atincorporatingpalliativecare intoundergraduate curricula: Australian HealthWorkforce AdvisoryCommittee2005,op.cit. professionals. and learningcurriculumforallhealth framework as part of a broad teaching incorporates an agreed competency based professionals; and approach to how we educate and train health moves towards aflexible,multidisciplinary 203
to thedeliveryofqualityservices. capabilities in self-directed learning are also integral in a team care environment. Strategies that develop professionals who will then continue to collaborate within local and regional networks involving health aged care, particularly when it can be delivered emerging as an effective strategy in primary and methodologies. Interdisciplinary learning is need tobebasedoneffective learning care practice.However, theseapproaches however of CPEandsupportforpalliativecare inprimary development offlexibleapproaches tothedelivery professional development in particular is the A further important element in continuing sectoral andcross disciplinelearning. assist in developing a consistent approach to cross articulation ofcore learningdomainswillfurther requirements at each level. Additionally the competencies being applied to match the knowledge with appropriate minimum This will require different levels of competency and required toflexiblycaterfordiffering circumstances. professional education and training approaches are undergraduate, post graduate and continuing operate within.Asaresult arangeof health care continuum,specialtyorsettingthey varying extents depending on which part of the professionals will be involved with dying patients to the level of service offered. In practice, health care health professionals are appropriately qualifiedfor The nationalpalliativecare standards require that engagement are required. support andaconsistentapproach tovolunteer standards for volunteer training, supervision and volunteers intothecare team and support to maximise the integration of settings. Appropriate training, ongoing supervision in supporting patients and their carers in a range of end of life care and make a significant contribution Finally, volunteers play a particularly unique role in 206 , and national 205 204
209 208 207 • end oflifecare inthefuture are: with what will be required to support palliative and The national issues that strike a particular resonance funding reforms thatare currently beingadvocated. occur in isolation from the broader national health services providing care attheendoflifewillnot It is clear that substantial reforms in resourcing Guidance Domain11:Appropriately resourced 10.8 10.7 10.6 10.5 10.4 10.3 10.2 10.1 Specific guidanceelements: and effective workforce Guidance Domain10:Flexible,optimised ibid, pp.6. Australian GovernmentNationalHealthandHospitals ReformCommission2009,op.cit.,pp.7. Australian GovernmentDepartmentofHealth andAgeing2009.PrimaryHealthCare ReforminAustralia,op.cit.,pp.131 increase localflexibilitytoidentifyandbetter service delivery and funding arrangements and the need to reduce the current fragmented the endoflife. support ofvolunteersproviding care at recruitment, training,supervisionand Develop nationalstandards for workforces. skilled primary care and aged care distribution of specialist palliative careto facilitate and optimal development and Collaborate with Health Workforce Australia continuing professional education. palliative and end of life care to underpin consistent setofcore competenciesfor Develop anddisseminateanationally specialist palliativecare curricula. populations, in all undergraduate and and AboriginalTorres StraitIslander minority and other marginalised groups end of life care and needs of ethnic Incorporate specific content related to and specialistpalliativecare curricula. death and dying in all undergraduate Include cross-cultural considerations in end oftheirlife. care to people who are approaching the have theknowledgeandskillstoprovide whose role interfaces with end of lifeEnsure care that all health care professionals care planning. providers have staff trained in advance Ensure all primary care and aged care care workforce. demographics of the specialist palliative data on the size, skill mix and Collect and report standardised national
• better accesstocare forpeopleathome’. investment inspecialistpalliativecare servicestoallow for their terminally ill patients, supported by additional services toprovide generalistpalliativecare support capacity and competence of primary health care the NHHRChasrecognised ‘theneedtobuildthe enable effective palliativecare delivery. Importantly, proposals that will be of particular benefit to and required, there are more specifically-targeted In addition to the big picture changes that may be within thesector. designed to facilitate system and cultural change resourcing arrangements, financial incentives are important to ensure that in developing future While supporting these principles it will be also be 11.5 11.4 11.3 11.2 11.1 Specific guidanceelements: Guidance Domain11:Appropriately resourced through collaborativeteammodels. promotes continuity and integration of care driven by a robust evidence base and also comprehensive primary care platform that is the reshaping anddevelopmentofa under-serviced populations. address inequities in access and the needs of families andcarers. life care toresidents, andsupportfor to reflect the cost of delivery of end of are accurately and adequately resourced Ensure that residential aged care facilities end oflifeinthecommunity. care at the and medications necessary to provide Ensure affordable accesstoequipment care. their life irrespective of the settings of people who are approaching the end of directly linked to care of Ensure public and private funding that is achievement ofdesired outcomes. service delivery and that support the population end of life care needs, cost of incorporate assessment of local Develop resourcing formulasthat services tomeettheirneeds. access end of life care resources and enable rural and remote communities to Adopt flexible funding arrangements to
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208 209 73 Guidance for the health care system 74 Guidance for the health care system Section 8Implementing the endoflifeGuidanc
75 Guidance for the health care system 76 Implementing the end of life Guidance a ‘gooddeath’forall. reform will be fundamental to achieving the goal of all Australians,andwhoshare theaspirationsfor responsibility toimprove care attheendoflifefor will need to be taken by all those who share the Aligning andclearlycommunicatingtheactionsthat implementation andfurtherdevelopment. be undertaken as an immediate first step to inform the investments made to date in the Guidance areas recommended that a comprehensive inventory of towards achievement of the Guidance elements. It is status map that would demonstrate progress document toinventoryallthisworkanddevelopa Guidance elements. It was beyond the scope of this has been undertaken in relation to many of the There isalready asignificantamountofworkthat about thereforms thatare setoutinthisGuidance. community will need to work together to bring clinical services, individual clinicians and the All levelsofgovernment,specialistandgeneralist business. Improving care at the end of life is everybody’s Section 8:ImplementingtheendoflifeGuidan improvement. solutions and evidence-based approaches to services to work together to develop common will require all key stakeholders, funders and leadership role, implementation of this Guidance territories. Clearly, regardless of the nominal service delivery should be led by states and closely relate tooperationalimplementationor designated to the Commonwealth. Issues that more approach should be taken, leadership has been Where it is determined that a national, standardised broader healthsystemreforms are implemented. health system and will need to evolve as the accountability relationships and structures of the recommended toconformtheexisting elements. These accountabilities have been collaborative implementation of the guidance conversation and decision making regarding for leadership and accountability to commence the This section makes recommendations
Care that is‘Personandcarefoued’ Guidance Domain2:Needs-basedcare 1.3 1.2 1.1 2.5 2.4 2.3 2.2 2.1 Element Element Guidance Domain1:Patientsempowereddecisions tomakefullyinformed need astheyapproach theendoftheirlife. location andtypecare andresources they people to make decisions about the education andinformationtosupport evidence-based, consumer-friendly process to develop and disseminate Develop a nationally led, systematic and agedcare systems advance care planning across the health approach to the implementation of Develop and implement a national the early stages of a life-limiting illness. the earlystagesofalife-limitingillness. of life care planning commencing from consumer and carer involvement in end procedures andtoolstosupport Develop andimplementpolicies, community andagedcare settings. of end of life care pathways for acute care, systematic approach to the implementationDevelop andimplementastandardised, approaching theendoflife. common trajectories of people that align consumer needs and the Develop disease cluster referral triggers specialist services. life needs across primary, aged care and consistent holistic assessment of end of Develop andimplementstreamlined, and carer needsattheendoflife. assessment toolstodeterminepatient Introduce standardised, validated end oflife. recognition of people approaching the to thedevelopmentofcriteriafor Develop anationalsystematicapproach Guidance Guidance
Commonwealth Commonwealth Commonwealth Commonwealth Commonwealth Lead by Commonwealth Commonwealth Commonwealth Lead by bodies services, consumer and peak aged care and primary care Specialist palliativecare, groups, carers groups, consumeradvocacy primary care services,patient palliative care, aged care and community, specialist Palliative care research research community care services, palliative care Caresearch, health and aged consumer andpeakbodies, States andterritories, research community services, palliative care care services,primarycare palliative care services, aged States andterritories,specialist clinicians, researchers States andterritories, Involves carers consumer advocacygroups, care services,patientgroups, Caresearch, health and aged States andterritories, consumers, carers and healthprofessionals, States and territories, legal groups, carers groups, consumeradvocacy All clinicalservices,patient Involves 77 Implementing the end of life Guidance 78 Implementing the end of life Guidance 3.7 3.6 3.5 3.4 3.3 3.2 3.1 Element Guidance Domain3:Involvedandsupportedcarers Provide accesstobereavement support for allcarers andfamilies. approaching theendoflife. their role providing care to someone resources to enable them to undertake Ensure that carers are provided with acknowledged. and accurately reflected and related toendoflifecare are adequately that their specific needs and experiences development and evaluation to ensure processes of policy and services Directly consult with carers in the consent ofthepatient. extent they wish to be and subject to the decisions and communications to the Ensure thatcarers are engagedincare the endoflife. health ofcarers ofpeopleapproaching tools to routinely assess and support the Develop and implement appropriate someone approaching theendoflife. assist carers sustaintheirrole incaringfor at home respite care arrangements to Provide access to residential and flexible life care. access to timely advice regarding end of educational programs, information,and the development and dissemination of Support the vital role of carers through Guidance
territories States and Commonwealth Commonwealth services All clinical Commonwealth Commonwealth territories, States and Commonwealth Lead by advocacy groups, carers All clinicalservices,consumer advocacy groups, carers clinical services,consumer States and territories, all advocacy groups, carers clinical services,consumer States and territories, all Consumers, patients,carers groups, carers services, consumeradvocacy community, all clinical Palliative care research groups, carers, HACC services, consumeradvocacy Commonwealth, all clinical advocacy groups, carers clinical services,consumer States and territories, all Involves 4.6 4.5 4.4 4.3 4.2 4.1 Element Guidance Domain4:Culturallycompetent,safeandappropriate end oflifecare. local communities to support improved health professionals andserviceswith Indigenous healthworkerstoconnect Support the strengthening of the role of approaching theendoftheirlife. for Indigenous Australians who are mechanisms tosupport‘return tocountry’ Ensure there are policies, procedures and Islander people. life forAboriginalandTorres Strait differences and care needs at the end of that facilitate understanding of cultural and non-Indigenous health care providers Build relationships betweenIndigenous health information and resources and provision of culturally appropriate Support thedevelopment access totrainedinterpreters. in a range of community languages and end oflifecare. practices that surround death, dying and cultural and ethnic values, beliefs and of care respect andreflect different processes Ensure that policies, procedures and all levels. multidisciplinary educationprograms at life care are incorporated into competence and safety related to end of Ensure that cultural and spiritual Guidance
territories States and territories States and services All clinical Commonwealth territories States and territories States and Lead by organisations Islander community health Aboriginal andTorres Strait All clinicalservices, organisations Islander community health Aboriginal andTorres Strait All clinicalservices, Commonwealth, organisations community health and Torres StraitIslander Commonwealth, Aboriginal States andterritories, communities’ councils clinical services, ethnic States and territories, all all clinicalservices Commonwealth, providers, allclinicalservices Universities, education Involves
79 Implementing the end of life Guidance 80 Implementing the end of life Guidance Care that is‘Drivenbyinformation’ 6.5 6.4 6.3 6.2 6.1 Element Guidance Domain6:atacollectedandusedtosupportqualityimprovement 5.3 5.2 5.1 Element andempoweredGuidance Domain5:Informed community level. held at clinical, national and jurisdictional various data collections and repositories Enable end of life data linkages between tools. nationally standardised measurement Develop and support the use of Ensure thatdataonsafety andquality improvement cycles. to expeditequalityand services and clinicians in a timely fashion compared andprovided backtoclinical of care attheendoflifeis collated, performance inendoflifecare. to supportimprovement andmonitor and service level activity and outcomes Collect anduseroutine dataonpatient and thewidercommunity. and aged care), funders, clinicians clinical services(specialist,primary (Commonwealth andstate/territory), stakeholders—government to endoflifecare ofthedifferent Inventory the data needs related Guidance programs. professional, education and awareness dying through health and legal Promote open discussion of death and initiatives inendoflifecare. literacy and community capacity building community awareness, consumer health strategy that guides and integrates Develop a national awareness raising qualityreview. • communitycapacitybuilding • endoflifepolicyandservice • voice in: Strengthen consumer participation and Guidance initiatives; and initiatives; and development;
Commonwealth programs National quality programs National quality services All clinical Commonwealth Lead by Commonwealth Commonwealth Commonwealth Lead by repositories States andterritories,clinical clinical services states and territories, all Palliative care researchers, and territories Commonwealth, states and territories Commonwealth, states groups, carers groups, consumeradvocacy all clinicalservices,patient AIHW, states andterritories, Involves care services Caresearch, health and aged consumer andpeakbodies States andterritories, health andagedcare services consumer andpeakbodies, States andterritories, groups, carers groups, consumeradvocacy clinical services,patient States and territories, all Involves
8.6 8.5 8.4 8.3 8.2 8.1 Element Guidance Domain8:Supportedresearch, knowledgetranslation andexchange 7.4 7.3 7.2 7.1 Element Guidance Domain7:Knowledge-ledcontinuousimprovement and endoflifecare. best-practice clinicalguidelinesforpalliative disseminating evidence and implementing Reduce unjustifiablevariationinpracticeby approaching theendoflife. needs and effective care of people evidence and knowledge in relation to the support the translation and diffusion of Develop andimplementstrategiesthat quality andsafetyissues. the actions taken in response to identified and quality of care at the end of life and Report onstrategiestoimprove safety community care, agedcare andacutecare). (specialist palliative care, primary and for end of life care across all care settings performance against national standards Implement, monitorandreport on Guidance professionals andpolicymakers. between researchers, health care of knowledge transfer methodologies Invest inthedevelopment roundtables etc. collaboratives, clinical forums, health professional participation in breakthrough supporting health service and health palliative andendoflifecare by Enhance the spread of innovation in of lifecare. family reported outcomes related to end collection and reporting of patient and Develop a national approach to the services andclinicians. outcomes related to end of life to health regular dissemination of research Provide dedicated resources for the life care. service research in palliative and end of Prioritise and invest in clinical and health translation into practice. translation intopractice. related toendoflifeexpediteits evidence/knowledge and research synthesis and dissemination of clinical Adopt a national approach to the Guidance
Commonwealth territories States and Commonwealth Commonwealth Commonwealth programs National quality Lead by programs National quality programs National quality services All clinical Commonwealth Lead by territories professionals, states and research community, health NHMRC, palliative care All clinicalservices groups, carers groups, consumeradvocacy clinical services,patient States and territories, all territories research funders, states and NHMRC, grantsbodies, services territories, universities, health research funders, states and NHMRC, grantsbodies, territories Commonwealth, states and Involves territories, allclinicalservices Commonwealth, states and clinical services research community, all territories, palliative care Commonwealth, states and states and territories National qualityprograms, clinical services states and territories, all National qualityprograms, Involves 81 Implementing the end of life Guidance 82 Implementing the end of life Guidance Care that is‘Organiedforqualityandafety’ 9.9 9.8 9.7 9.6 9.5 9.4 9.3 9.2 9.1 Element Guidance Domain9:Seamless,well-coordinated care of their life. of theirlife. staff are credentialed intheiruse care attheendoflife,and ensure that care settings where needed to provide medication and equipment in appropriate Ensure the availability of affordable of services. with navigation, transition and utilisation complex needsattheendoflifetoassist coordination of care for all patients with nomination of a case coordinator, for the Implement strategies, including the specialist palliativecare services. between primary care, aged care and Establish referral andadvicenetworks areas. patients and families in rural and remote communication and support for clinicians, (e.g. telehealth networks) to enhance Utilise emerging technologies care facilities. dying at home and in residential aged services tosupportthecare ofpeople Expand specialist palliative care outreach with role andcapabilityframeworks. within defined regions and in accordance Network specialist palliative care services patients who are approaching the end specialist palliativecare servicesfor Ensure 24/7accesstoprimarycare and people approaching theendoflife. support needs-basedservicedeliveryfor specialist palliativecare servicesto specific organisations and services, and providers, agedcare services,disease networks between primary care Develop strong partnerships and end oftheirlife. and support to people approaching the care services to provide end of life care integrated primaryhealthandcommunity Build the capacity and competence of Guidance
territories States and territories States and territories States and territories States and territories States and territories States and territories States and territories States and Commonwealth Lead by All clinicalservices services, allclinicalservices Specialist palliative care services services, primary care Specialist palliative care services, GPs services, primary care Specialist palliative care of residential agedcare, GPs services approved providers Specialist palliative care services Specialist palliative care aged care services community care services, services, primary and Specialist palliative care organisations, disease specific providers, agedcare services, providers, primary care Specialist palliative care community services care, agedcare and States andterritories,primary Involves 10.8 10.7 10.6 10.5 10.4 10.3 10.2 10.1 Element Guidance Domain10:Flexible,optimisedandeffective workforce the endoflife. support ofvolunteersproviding care at recruitment, training,supervisionand Develop nationalstandards for and agedcare workforces. palliative care and skilled primary care development and distribution of specialist Australia to facilitate optimal Collaborate with Health Workforce continuing professional education. palliative and end of life care to underpin consistent setofcore competenciesfor Develop anddisseminateanationally specialist palliativecare curricula. populations, in all undergraduate and and AboriginalTorres StraitIslander minority and other marginalised groups end of life care and needs of ethnic Incorporate specific content related to specialist palliativecare curricula. death and dying in all undergraduate and Include cross-cultural considerations in end oftheirlife. care topeoplewhoare approaching the have the knowledge and skills to provide whose role interfaces with end of life care Ensure that all health care professionals care planning. providers have staff trained in advance Ensure all primary care and aged care care workforce. demographics of the specialist palliative data on the size, skill mix and Collect and report standardised national Guidance Commonwealth Commonwealth Commonwealth Commonwealth Universities Commonwealth Commonwealth Commonwealth Lead by groups, carers groups, consumeradvocacy services, peakbodies,patient specialist palliative care States andterritories, territories universities, states and Health Workforce Australia, education providers Universities, TAFE, all education providers Universities, TAFE, all TAFE, Health educationproviders, education providers Universities, TAFE, all residential aged care approved providers of Primary care providers, States and territories Involves 83 Implementing the end of life Guidance 84 Implementing the end of life Guidance 11.5 11.4 11.3 11.2 11.1 Element Guidance Domain11:Adequatelyresourced Guidance support for families and carers. of end of life care to residents, and resourced to reflect the cost of delivery facilities are accurately and adequately Ensure thatresidential agedcare care attheendoflifeincommunity. and medications necessary to provide Ensure affordable access to equipment of care. of their life irrespective of the settings of people who are approaching the end achievement ofdesired outcomes. of service delivery and that support the funding that is directly linked to care Ensure public and private health care population endoflifecare needs,cost incorporate assessment of local Develop resourcing formulasthat services tomeettheirneeds. access end of life care resources and enable ruralandremote communitiesto Adopt flexible funding arrangements to
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