End-of-life care and physician-assisted dying 1 Setting the scene 2 Public dialogue research 3 Reflections and recommendations British Medical Association bma.org.uk British Medical Association End-of-life care and physician-assisted dying I End-of-life care and physician-assisted dying 1. Setting the scene 2. Public dialogue research 3. Reflections and recommendations II British Medical Association End-of-life care and physician-assisted dying This volume is the first of a three part report on a BMA project on end-of-life care and physician-assisted dying. The project was overseen by a steering group appointed by BMA council, working with a staff project team from across the BMA. Chair of project and steering group Dr Ian Wilson (consultant anaesthetist) BMA Representative Body Chair BMA council-appointed steering group Members: Dr Peter Bennie (consultant in general adult psychiatry) Dr John Chisholm (general practitioner) Dr Jacqueline Davis (consultant radiologist) Professor the Baroness Ilora Finlay (consultant in palliative medicine) Professor Robin Gill (emeritus professor of applied theology) Ms Rosalind Ham (retired chartered physiotherapist and academic researcher) Professor the Baroness Sheila Hollins (consultant psychiatrist) Dr Helena McKeown (general practitioner) Professor Maeve Rea (consultant geriatrician) Staff project team Project leads: Ruth Campbell, senior ethics advisor Veronica English, head of medical ethics Members: Duncan Bland, research analyst, health policy and economic research unit Jacqueline Connolly, executive officer – policy, NHS secondary care division Judith Cross, senior policy adviser, BMA Northern Ireland Lisa Cunningham, strategic communications manager (until September 2015) Fay Davies, research and policy executive, professional policy division (until September 2015) Martin Davies, senior ethics advisor Neil Dunsire, public affairs officer, BMA Scotland (from August 2015) Caroline Eason, deputy head of conference unit Natasha Edwards, marketing manager (until May 2015) Gail Grant, public affairs manager, BMA Scotland (until July 2015) Eloise Henderson, media officer Daniel Hodgson, senior policy executive – policy, NHS secondary care division David Knowles, senior public affairs advisor Lucy Merredy, head of policy and committee secretariat, BMA Wales Aoife Nowell, marketing executive Alex Ottley, senior policy executive – policy, NHS primary care division Laura Southerland, communications project officer (from September 2015) Holly Weldin, public affairs assistant Robert Wilson, senior policy executive, professional policy division (from July 2015) British Medical Association End-of-life care and physician-assisted dying III Volume 1 report written by Ruth Campbell Jacqueline Connolly Judith Cross Martin Davies Fay Davies Veronica English Gail Grant Daniel Hodgson Lucy Merredy Thanks are due to the following people who gave generously of their time in commenting on this report: Dr Teresa Cannavina, Dr Amer Jafar, Dr Rosemary Lennard, Dr Heidi Mounsey, Dr Phil Steadman, and Dr Gary Wannan. Information about this project can be found on the BMA’s website at: bma.org.uk or by contacting: British Medical Association BMA House Tavistock Square London WC1H 9JP IV British Medical Association End-of-life care and physician-assisted dying Foreword from the project and steering group chair All lives end. Whilst cultural norms vary, in the UK discussions about death and dying tend to be thought uncomfortable – perhaps leaving fears and uncertainties unaddressed, and knowledge lacking. The UK has led the world in developing pathways and strategies for comprehensive and holistic care for those whose lives are coming to an end and the standards and quality of what can be provided. Yet the provision of and access to such care remains variable, dependent on a patient’s geographical location; their condition; and their knowledge of local systems. Options and choices at the end of life have recently received unparalleled scrutiny in the media, popular culture, the academic community, and in legislatures – from care pathways and care bundles through to assisted dying. Most recently, and at the time of writing, a private member’s bill seeks to widen access to and improve provision of palliative care. These issues elicit a range of responses and often impassioned, polarised opinion, making it hard to consider qualitative, nuanced factors. It is against this backdrop that the BMA launched a project examining public and professional attitudes and understanding around end-of-life care issues and options. The approach has been designed to allow consultation and discussion with both doctors and the public in a structured qualitative dialogue, designed to obtain a richness of information, opinion and understanding. The aim is to increase our understanding and support discussions around these difficult areas – advising our decisions and deliberations, both within the BMA and in public debate. This project report contains three parts: – Part 1 (this volume) seeks to set the scene against which the qualitative research commissioned by the BMA has been conducted, outlining the context in which public, parliamentary, and professional debate has been conducted, and bringing together both peer-reviewed research and surveys of opinion. It is a literature review, not a systematic review; it does not seek to state the BMA’s views or make value-judgements on the included materials. While the breadth of this review is extensive, the project team is aware of the gaps in what could be achieved in this volume – particularly in the field of managing pain, although noting that the BMA Board of Science is planning a major new report which will explore pain relief in palliative care as well as in other conditions. There is also only limited focus on children although there are profound implications both for children who are themselves dying and for children who have been bereaved. – Part 2 will be published alongside this volume, and constitutes unique, independently commissioned qualitative research into patients’ and doctors’ fears and concerns; their perceptions and attitudes about the end of life and dying; perceptions and experiences of the availability, accessibility, and quality of end-of-life care in the UK; and the potential impact any legislative change around assisted dying might have on doctor-patient relationships. – Part 3 will bring together responses to the research and subsequent discussions with groups of members and experts in the fields. It will propose recommendations on areas where there is room to improve or potential to expand our knowledge, and will address both practical and ethical issues. This volume will be published in the run-up to the BMA’s Annual Representative Meeting, which is taking place in June 2016. It is my hope that this report will make a significant contribution to the Association’s own debates and discussions and inform future BMA work in this area. These issues have much broader interest and relevance, extending far beyond the medical profession, and so I hope that this report will also play a role in the continuing public dialogue, and most importantly, make a contribution to real, sustained, change. Dr Ian Wilson Project and steering group chair BMA Representative Body Chair British Medical Association End-of-life care and physician-assisted dying V Contents Foreword from the project and steering group chair ...........................................iv Introduction ........................................................................................................................1 Chapter One: End-of-life care in the UK .....................................................................5 Part One: Background............................................................................................................................. 5 Part Two: Delivery of end-of-life care ................................................................................................ 6 – The Liverpool Care Pathway .................................................................................................................6 1. England ...................................................................................................................................................................7 – Parliamentary concerns..........................................................................................................................9 2. Wales ..................................................................................................................................................................... 11 3. Scotland ............................................................................................................................................................... 13 4. Northern Ireland .............................................................................................................................................. 14 5. Funding ................................................................................................................................................................ 16 – State funding ............................................................................................................................................ 16 – Voluntary sector ...................................................................................................................................... 17 – Social care ..................................................................................................................................................18