Living with Ageing and Dying

Ageing populations mean that palliative and end of life care for older people must assume greater priority. Indeed, there is an urgent need to improve the experiences of older people at the end of life, given that they have been identified as the 'disadvantaged dying'. To date, models of care are underpinned by the ideals of specialist palliative care which were developed to meet the needs of predominantly middle-aged and 'young old' people, and evidence suggests these may not be adequate for the older population group. This book identifies ways forward for improving the end of life experiences of older people by taking an interdisciplinary and international approach. Providing a synergy between the currently disparate literature of gerontology and palliative care, a wide range of leading international experts contribute to discussions regarding priority areas in relation to ageing and end of life care. Some authors take a theoretical focus, others a very practical approach rooted in their clinical and research experience. The issues covered are diverse, as are the countries in which discussions are contextualised. Those working in both palliative care and gerontology will find the issues and advice discussed in this book hugely topical and of real practical value. Contains contributions from a range of leading international experts from different disciplinary backgrounds Identifies ways forward in improving the end of life experiences of older people by taking a multidisciplinary and international approach Fills a gap in the current market, addressing an issue of increasing policy priority globally Merryn Gott , Professor of Health Sciences, University of Auckland, New Zealand, and Co-edited by Christine Ingleton , Professor of Palliative Care Nursing, The University of Sheffield, UK CONTENTS Section 1 - What is Different about Dying in Old Age? 1: Barbara Gomes, Joachim Cohen, Luc Deliens and Irene J Higginson: International trends in circumstances of death and dying amongst older people 2: Allan Kellehear: The care of older people at the end of life: an historical perspective 3: John A Vincent: Anti-ageing and scientific avoidance of death 4: Jane Seymour and Merryn Gott: The challenges of health technology for ageing and dying 5: Merryn Gott, Andrew M. Ibrahim and Robert H. Binstock: The disadvantaged dying: ageing, ageism and palliative care provision for older people in the UK 6: Liz Lloyd: What do we know about the congruence between what older people prioritise at the end of life and policy and practices? Section 2 - What Can a Public Health Perspective Bring to Improving the End of Life Experience for Older People? 7: Bruce Rumbold: Health promoting palliative care and dying in old age 8: Neil Small and Anita Sargeant: User and community participation at the end of life 9: Koen Meeussen, Lieve Van den Block and Luc Deliens: Advance care planning: international perspectives 10: Jonathan Koffman: New public health approaches to address diversity and end-of-life issues for older people? 11: Amanda Robert and Sinead McGilloway: Loss and bereavement in older age: developing community-based bereavement support Section 3 - Involving Carers at the End of Life 12: Sheila Payne: The changing profile of the family caregivers of older people: a European perspective 13: Gunn Grande and John Keady: Needs, access and support for older carers 14: Mike Nolan and Tony Ryan: Family carers, palliative care and the end-of-life 15: Barbara Hanratty: Costs of family caregiving 16: Philip Larkin and Meg Hegarty: Workforce development: an international perspective on who will provide care Section 4 - The Significance of Place at the End of Life 17: Habib Chaudhury, Gloria Puurveen and Jennifer Lyle: Place matters: an exploration of the role of physical environment in end of life care 18: Katherine Froggatt, Kevin Brazil, Jo Hockley and Elisabeth Reitinger: Improving care for older people living and dying in long term care settings: a whole system approach 19: Deborah Parker: The development and implementation of evidence based palliative care guidelines for residential care: lessons for other countries 20: Clare Gardiner and Sarah Barnes: Improving environments for care at the end of life in hospitals Section 5 - Moving Forward: A Debate about Priorities for Research and Service Development 21: Murna Downs: End of life care for older people with dementia: Priorities for research and service development 22: Irene J. Higginson: Evidence, evidence and evidence: future priorities for research and service development in improving palliative care for older people 23: Scott A. Murray: Priorities for research and service development in primary care to improve end-of-life for older people 24: Margaret O'Connor: Priorities for specialist palliative care: an Australian perspective 25: Sabine Pleschberger: Inter-disciplinary perspectives 26: Jackie Robinson and Christine Ingleton: Workforce capacity issues: a New Zealand perspective Merryn Gott joined the University of Auckland in 2009 as Professor of Health Sciences in the School of Nursing. Her PhD is in gerontology and over the last 12 years she has developed an international programme of research exploring palliative and end of life care for older people. She currently holds grants from the Department of Health, the Health Research Council of New Zealand, the Economic and Social Research Council, BUPA, as well as local charities. She has published over 70 journal articles and currently serves on the Editorial Boards of Progress in Palliative Care and the British Medical Journal (Supportive and Palliative Care). Christine Ingleton is Professor of Palliative Care Nursing in the School of Nursing & Midwifery at the University of Sheffield. She has contributed to 30 research grants and awards totalling over £3.5 million. She has published over 90 outputs in peer reviewed journals and contributed to 6 books on health services research. She has edited 2 best-selling research based textbooks on end of life care. She is Fellow of the European Academy of Nursing Science and Fellow of the Royal Society of Arts. She currently serves on the British Journal of Community Nursing and the British Medical Journal (Supportive and Palliative Care). Contributors: Sarah Barnes, School of Health and Related Research, University of Sheffield, UK Robert Binstock, School of Medicine, Case Western Reserve University, USA Kevin Brazil, Division of Palliative Care, McMaster University, Hamilton, Canada Habib Chaudhury, Department of Gerontology, Simon Fraser University, Canada Joachim Cohen, End-of-life Care Research Group, Vrije Universiteit Brussel, Belgium Luc Deliens, Department of Public and Occupational Health, VU University Medical Center, Amsterdam, The Netherlands; and End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium Murna Downs, School of Health Studies, University of Bradford, UK Katherine Froggatt, School of Health and Medicine, Lancaster University, Lancaster, UK Clare Gardiner, School of Nursing and Midwifery, University of Sheffield, UK Barbara Gomes, Department of Palliative Care, Policy & Rehabilitation, Cicely Saunders Institute, King's College London, UK Merryn Gott, School of Nursing, University of Auckland, New Zealand Gunn Grande, School of Nursing, Midwifery and Social Work, University of Manchester, UK l Barbara Hanratty, School of Population, Community & Behavioural Sciences, University of Liverpool, UK l Meg Hegarty, Palliative and Supportive Services, Flinders University, Australia Irene J. Higginson, Cicely Saunders Institute, King's College London and Cicely Saunders International, UK Jo Hockley, St Christopher's Hospice, London, UK Andrew M. Ibrahim, School of Medicine, Johns Hopkins University, USA Christine Ingleton, School of Nursing and Midwifery, University of Sheffield, UK John Keady, School of Nursing, Midwifery and Social Work, University of Manchester, UK Orla Keegan, The Irish Hospice Foundation, Ireland Allan Kellehear, Department of Social & Policy Sciences, University of Bath, UK Jonathan Koffman, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King's College London, UK Philip Larkin, School of Nursing, Midwifery and Health Systems, University College Dublin, Ireland & Our Lady's Hospice, Dublin Liz Lloyd, School for Policy Studies, University of Bristol, UK Jennifer Lyle, Department of Gerontology, Simon Fraser University, Canada Sinead McGilloway, Department of Psychology, National University of Ireland, Maynooth, Ireland Koen Meeussen, End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium Scott A. Murray Primary Palliative Care Research Group, Centre for Population Health Sciences: General Practice, University of Edinburgh, UK Mike Nolan, Sheffield Institute for Studies on Ageing, School of Nursing and Midwifery, University of Sheffield, UK Margaret O'Connor, Palliative Care Research Team, Faculty of Medicine, Nursing & Health Sciences, Monash University, Australia Deborah Parker, UQ/Blue Care Research and Practice Development Centre, University of Queensland, Australia Sheila Payne, International Observatory on End of Life Care, Lancaster University, UK Sabine Pleschberger, Department of Palliative Care and Organisational Ethics, Faculty of Interdisciplinary Studies, University of Klagenfurt, Vienna, Austria Gloria Puurveen, Department of Gerontology, Simon Fraser University, Canada Elisabeth Reitinger, IFF Faculty of Interdisciplinary Studies, Alpen-Adria University of Klagenfurt, Vienna, Austria Amanda Roberts, Department of Psychology, National University of Ireland, Maynooth, Ireland Jackie Robinson, Palliative Care Services, Auckland District Health Board, New Zealand Bruce Rumbold, Palliative Care Unit, School of Public Health, La Trobe University, Australia Tony Ryan, School of Nursing & Midwifery, University of Sheffield, UK Anita Sargeant, School of Health Studies, University of Bradford, UK Jane Seymour, School of Nursing, Midwifery and Physiotherapy, Faculty of Medicine and Health Sciences, University of Nottingham, UK Neil Small, School of Health Studies, University of Bradford, UK Lieve Van den Block, End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium; and Department of General Practice, Vrije Universiteit Brussel, Brussels, Belgium John A. Vincent, Department of Sociology and Philosophy, University of Exeter, UK