PALLIATIVE CARE FOR ALL - Hospice Foundation

1 PALLIATIVE care FOR ALLI ntegrating PALLIATIVE care intoDisease Management FrameworksPalliative care for AllIntegrating PALLIATIVE care intoDisease Management FrameworksJoint HSE and IHF Report of the Extending Access StudyPublished 2008iContentsPrefaceForewordivMethodolog yviTerms of ReferenceviiSteering Committee MembershipviiiAcknowledgmentsxGlossaryxi DefinitionsxiiExecutive Summary1 Chapter One:Introduction5 Setting the Scene8 Chapter Two:Context9 Chapter Three: Policy17 Chapter Four: Service Models25 Study Analysis and Deliberations32 Chapter Five: Examining Levels of Non-Malignant Access to Specialist PALLIATIVE Care33 Chapter Six:The Role of Non-Specialist PALLIATIVE care ;Eligibility, Referral and Discharge Criteria for Specialist PALLIATIVE Care37 Implementing Change46 Chapter Seven:Summary47 Recommendations50 Chapter Eight:Recommendations51 Recommendations Overarching53 Recommendations Disease-Specific56 Chapter Nine:Implementation63 References65 Appendix One: PALLIATIVE care and Chronic Obstructive Pulmonary Disease73 Appendix Two: PALLIATIVE care and Dementia97 Appendix Three: PALLIATIVE care and Heart Failure119 Appendix Four:Submission sent to PALLIATIVE care Education Taskforce143 Appendix Five:List of Submissions received during Consultation Process149 Index of DiagramsDiagram 1:Disease Trajectory in Heart and Lung Failure13, 79, 125 Diagram 2:Disease Trajectory in Dementia and Frailty14, 101 Diagram 3:Disease Trajectory in Cancer14 Diagram 4:Trajectory Model of PALLIATIVE Care15 Diagram 5.

2 Timing of PALLIATIVE care in Disease Trajectory in Heart and Lung Failure39, 90, 136 Diagram 6:Timing of PALLIATIVE care in Disease Trajectory in Dementia and Frailty39, 113iiiPALLIATIVE care FOR ALLI ntegrating PALLIATIVE care into Disease Management Frameworks ForewordStatement from Health Service ExecutiveThe HSE provides thousands of different services in hospitals and communities across the country. At some stageevery year, everybody in Ireland will use one or more of the services provided. They are of vital importance to theentire HSE has a statutory responsibility for planning and commissioning specialist and non-specialist PALLIATIVE careservices on a national basis in conjunction with the voluntary sector in Ireland. The provision of services encompassesa broad range of interventions in multiple locations ranging from acute general hospitals (AGH) and specialistpalliative care (SPC) inpatient units to home and community based supports and bereavement supports.

3 Services areaccessed in a number of ways across the delivery SPC services include: SPC Inpatient Units Home care Day Services SPC in AGH Community and other intermediate levels of PALLIATIVE care in Community Hospitals Bereavement Support Education and ambition of the HSE is that everyone will have easy access to high quality health and social services. Thisambition is comparable to the goal of PALLIATIVE care which is to achieve best quality of life for patients and similarity, along with the acceptance of the need for increased PALLIATIVE care services and interventions into thefuture as the demographics suggest an ageing population with increased chronic illnesses, led to this study beingundertaken in HSE recognises the potential of PALLIATIVE care to alleviate pain and distress and the need to work with all tomake care available for all who need it. This report underpins that vision, with the key central messages thatpalliative care should be available as a component part of chronic disease management frameworks and that all SPCservices accept referrals based on needs rather than diagnosis.

4 The report has provided the rationale and signposts for PALLIATIVE care to be delivered in all settings and at all seeking to deliver on the recommendations, we must reach out to a wide number of stakeholders both within thespecialist PALLIATIVE care profession and those who work in disease-specific frameworks and older persons services,those working in policy formation, research and education. This report, in keeping with the 2001 report from theNational Advisory Committee on PALLIATIVE care , points the way ConwayAssistant National Director for PALLIATIVE care and Chronic Illness, HSEN ovember 2008ivPALLIATIVE care FOR ALLI ntegrating PALLIATIVE care into Disease Management Frameworks Statement from Irish Hospice FoundationThe Irish Hospice Foundation (IHF) is a not-for-profit organisation that promotes the Hospice philosophy and supportsthe development of Hospice and PALLIATIVE care . IHF s vision is that no one should have to face death or bereavementwithout appropriate care and support.

5 The IHF seeks to advocate and influence the necessary improvements in thepalliative care services in Ireland based on the recommendations of the report of the National Advisory Committee onPalliative care (NACPC), published and endorsed by the Department of Health and Children. For some time the IHF has been aware of and concerned about inequity in provision of PALLIATIVE care for people with diseases other than cancer, and in May 2006 commenced funding a night nursing service specifically for suchpatients. In 2007 the IHF committed to undertake a development project in this policy as outlined in the NACPC report is generally supported by all those involved in Hospice / PALLIATIVE care . Thispolicy requires that SPC services be provided on the basis of need and not diagnosis. Some service providers areclearly in breach of this policy. As the taxpayer increasingly funds core services, future service level agreements shouldrequire a consistent approach to admission criteria to PALLIATIVE care services.

6 As the majority of people who die from diseases other than cancer do not require SPC, the disease-specific servicesmust also incorporate PALLIATIVE care within the pathway for their patients who have a life-limiting illness. The optimalmethod for this to be achieved is through shared care . This report has highlighted the opportunity for collaboration between PALLIATIVE care professionals and otherspecialities in the provision of education and guidance relating to the need of patients with advancedincurable implementation of the recommendations of this report will support the necessary developments in these MurrayChief Executive Officer Irish Hospice FoundationNovember 2008vPALLIATIVE care FOR ALLI ntegrating PALLIATIVE care into Disease Management Frameworks MethodologyThe 2001 report of the NACPC recommends that when assessing the need for specialist PALLIATIVE care services,each health board should consider the needs of patients with malignant and non-malignant disease [1]

7 The NACPC report there has been significant progress made in the funding and development of PALLIATIVE careservices, with advances in specialist inpatient units, community SPC teams and increases in staffing levels in of and access to PALLIATIVE care services for people with diseases other than cancer has to be furtherprogressed in line with national policy developments [2-7].Disease SelectionFollowing discussions the HSE and IHF committed to undertake the Extending Access Study to examine the palliativecare needs of adults1with diseases other than cancer. The three diseases selected for initial focus of the study werechronic obstructive pulmonary disease (COPD), dementia and heart failure. The rationale for this selection was based on the following factors: Mortality rates for these diseases rank among the highest in Ireland. The PALLIATIVE care needs of people who have these pathologies and do not have a malignant diagnosis are notbeing responded to in a consistent manner in Ireland.

8 Research has indicated that people who have these diseases can experience equal and sometimes greater palliativecare needs than people with malignant conditions. The HSE Transformation Programme has established disease-specific advisory groups to examine the pathways and clinical interventions for people with these diseases and the findings from this study will inform these advisory groups. The National Council for PALLIATIVE care in the UK have established specific policy groups that encompass these diseases which have successfully influenced the development of PALLIATIVE care in these specific disease Project Team and the Steering Committee of the Extending Access Study are acutely aware of the need toexamine the role of PALLIATIVE care for those with other non-malignant diseases, including people with chronic kidneydisease, cystic fibrosis, pulmonary fibrosis, scleroderma, multiple sclerosis, motor neurone disease (MND) and thosewith cardio vascular accident.

9 It is hoped that the findings and implementation plan associated with this report willprovide the necessary momentum to address the PALLIATIVE care needs of these patient groups following thepublication of this report. It is recognised that people with these diseases will also experience a range of other co-morbidities that may at times become the primary determinant of their health needs, and this should always betaken into account when considering their PALLIATIVE care needs. viPALLIATIVE care FOR ALLI ntegrating PALLIATIVE care into Disease Management Frameworks 1 The PALLIATIVE care model for children with life-limiting illness will be guided by the DoHC Committee on Paediatric PALLIATIVE care and is not addressed in this of Study The Extending Access Study and subsequent compilation of the PALLIATIVE care for All report, was overseen by aSteering Committee chaired by James Conway, Assistant National Director of PALLIATIVE care and Chronic Illness, Working Groups were established to examine the particular PALLIATIVE care needs of people with COPD,dementia and heart failure, respectively.

10 The Steering Committee and Working Groups had representation fromspecialists within the field of PALLIATIVE care and strong clinical and professional representation crossing the specialistareas selected. Each of the Working Groups met five times and informed and advised the Project Team on thecontent of the disease-specific appendices. The Project Team undertook a wide-ranging review of literature. Viewswere also sought from service users and/or family members of people with COPD, dementia and heart failure. Therepresentatives from SPC on the Steering Committee and Working Groups met twice during the course of the studyto consider and seek consensus on issues arising that were specifically pertinent to ProcessThe draft report of the Extending Access Study was made available for open consultation from mid-June to earlyAugust 2008. Submissions were specifically invited from groups and individuals who have a role in addressing thechallenges identified in this report.