Palliative Care For

PALLIATIVE CARE FOR ALL Integrating Palliative Care into Disease Management Frameworks Palliative Care for All Integrating Palliative Care into i Disease Management Frameworks Joint HSE and IHF Report of the Extending Access Study Published 2008 Contents Preface Foreword iv Methodology vi Terms of Reference vii Steering Committee Membership viii Acknowledgments x Glossary xi Definitions xii Executive Summary 1 Chapter One: Introduction 5 Setting the Scene 8 Chapter Two: Context 9 Chapter Three: Policy 17 Chapter Four: Service Models 25 Study Analysis and Deliberations 32 iii Chapter Five: Examining Levels of Non-Malignant Access to Specialist Palliative Care 33 Chapter Six: The Role of Non-Specialist Palliative Care; Eligibility, Referral and Discharge Criteria for Specialist Palliative Care 37 Implementing Change 46 Chapter Seven: Summary 47 Recommendations 50 Chapter Eight: Recommendations 51 PALLIATIVE CARE FOR ALL PALLIATIVE Recommendations – Overarching 53 Recommendations – Disease-Specific 56 Chapter Nine: Implementation 63 References 65 Appendix One: Palliative Care and Chronic Obstructive Pulmonary Disease 73 Integrating Palliative Care into Disease Management Frameworks Integrating Palliative Care Appendix Two: Palliative Care and Dementia 97 Appendix Three: Palliative Care and Heart Failure 119 Appendix Four: Submission sent to Palliative Care Education Taskforce 143 Appendix Five: List of Submissions received during Consultation Process 149 Index of Diagrams Diagram 1: Disease Trajectory in Heart and Lung Failure 13, 79, 125 Diagram 2: Disease Trajectory in Dementia and Frailty 14, 101 Diagram 3: Disease Trajectory in Cancer 14 Diagram 4: Trajectory Model of Palliative Care 15 Diagram 5: Timing of Palliative Care in Disease Trajectory in Heart and Lung Failure 39, 90, 136 Diagram 6: Timing of Palliative Care in Disease Trajectory in Dementia and Frailty 39, 113 Foreword Statement from Health Service Executive The HSE provides thousands of different services in hospitals and communities across the country. At some stage every year, everybody in Ireland will use one or more of the services provided. They are of vital importance to the entire population. The HSE has a statutory responsibility for planning and commissioning specialist and non-specialist palliative care services on a national basis in conjunction with the voluntary sector in Ireland. The provision of services encompasses a broad range of interventions in multiple locations ranging from acute general hospitals (AGH) and specialist palliative care (SPC) inpatient units to home and community based supports and bereavement supports. Services are accessed in a number of ways across the delivery system. Current 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 iv • Education and Research. The ambition of the HSE is that everyone will have easy access to high quality health and social services. This ambition is comparable to the goal of palliative care which is to achieve best quality of life for patients and families. This similarity, along with the acceptance of the need for increased palliative care services and interventions into the future as the demographics suggest an ageing population with increased chronic illnesses, led to this study being undertaken in 2007. The HSE recognises the potential of palliative care to alleviate pain and distress and the need to work with all to make care available for all who need it. This report underpins that vision, with the key central messages that PALLIATIVE CARE FOR ALL PALLIATIVE palliative care should be available as a component part of chronic disease management frameworks and that all SPC services accept referrals based on needs rather than diagnosis. The report has provided the rationale and signposts for palliative care to be delivered in all settings and at all levels. In seeking to deliver on the recommendations, we must reach out to a wide number of stakeholders both within the specialist 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 the National Advisory Committee on Palliative Care, points the way forward. Integrating Palliative Care into Disease Management Frameworks Integrating Palliative Care James Conway Assistant National Director for Palliative Care and Chronic Illness, HSE November 2008 Statement from Irish Hospice Foundation The Irish Hospice Foundation (IHF) is a not-for-profit organisation that promotes the hospice philosophy and supports the development of hospice and palliative care. IHF’s vision is that no one should have to face death or bereavement without appropriate care and support. The IHF seeks to advocate and influence the necessary improvements in the palliative care services in Ireland based on the recommendations of the report of the National Advisory Committee on Palliative 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 such patients. In 2007 the IHF committed to undertake a development project in this area. The policy as outlined in the NACPC report is generally supported by all those involved in hospice/palliative care. This policy requires that SPC services be provided on the basis of need and not diagnosis. Some service providers are clearly in breach of this policy. As the taxpayer increasingly funds core services, future service level agreements should require a consistent approach to admission criteria to palliative care services. As the majority of people who die from diseases other than cancer do not require SPC, the disease-specific services must also incorporate palliative care within the pathway for their patients who have a life-limiting illness. The optimal method for this to be achieved is through shared care. v This report has highlighted the opportunity for collaboration between palliative care professionals and other specialities in the provision of education and guidance relating to the need of patients with advanced incurable illnesses. The implementation of the recommendations of this report will support the necessary developments in these areas. Eugene Murray Chief Executive Officer PALLIATIVE CARE FOR ALL PALLIATIVE Irish Hospice Foundation November 2008 Integrating Palliative Care into Disease Management Frameworks Integrating Palliative Care Methodology The 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] p.43. Since the NACPC report there has been significant progress made in the funding and development of palliative care services, with advances in specialist inpatient units, community SPC teams and increases in staffing levels in AGH. Provision of and access to palliative care services for people with diseases other than cancer has to be further progressed in line with national policy developments [2-7]. Disease Selection Following discussions the HSE and IHF committed to undertake the Extending Access Study to examine the palliative care needs of adults1 with diseases other than cancer. The three diseases selected for initial focus of the study were chronic 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 not being responded to in a consistent manner in Ireland. • Research has indicated that people who have these diseases can experience equal and sometimes greater palliative vi care 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 frameworks. The Project Team and the Steering Committee of the Extending Access Study are acutely aware of the need to examine the role of palliative care for those with other non-malignant diseases, including people with chronic kidney PALLIATIVE CARE FOR ALL PALLIATIVE disease, cystic fibrosis, pulmonary fibrosis, scleroderma, multiple sclerosis, motor neurone disease (MND) and those with cardio vascular accident. It is hoped that the findings and implementation plan associated with this report will provide the necessary momentum to address the palliative care needs of these patient groups following the publication 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 be taken into account when considering their palliative care needs. Integrating Palliative

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