This report explores the current state of end-of-life care policy and practice in the UK. It focuses in particular on the experiences of older people and incorporates their views and the views of carers. Drawing on a comprehensive literature review, analysis of data from an ESRC-funded study, and the outcomes of a consultation exercise with older people hosted by Help the Aged, the report identifies the range of patterns and circumstances of death and dying In old age; outlines the current policy and practice context; compares the experiences of older people who receive specialist palliative care and those who do not; and explores key issues in older people's accounts of death, dying and bereavement, including their practical, social and spiritual concerns.
The issues raised in the report will feed into current debates such as those around palliative health and end-of-life care, and right-to-die legislation.
Jane Seymour is Senior Lecturer in the Palliative and End-of-Life Care Research Group at the University of Sheffield. Ros Witherspoon is a PALS (Patient Advice and Liaison Service) officer with the Sheffield Teaching Hospitals NHS Foundation Trust. Merryn Gott is a lecturer in gerontology in the Sheffield Institute for Studies on Ageing, University of Sheffield. Helen Ross is a lecturer in gerontology in the Sheffield Institute for Studies on Ageing, University of Sheffield. Sheila Payne is Professor of Palliative Care and Head of the Palliative and End of Life Care Research Group, University of Sheffield. Tom Owen is Research Manager at Help the Aged.
Executive summary; Introduction; Definitions, policies and practices: the broader context of end-of-life care; Patterns, circumstances and experiences of end-of-life care among older people; 'Places' of care at the end of life; Communication and decision making at the end of life; Conclusion and recommendations.
"This is an excellent, informative and eye-opening read ... a really useful tool, not only for health professionals caring for the older population, but also for those developing services for the future delivery of health care that meets the needs of this ever increasing group." International Journal of Palliative Nursing
"This report is essential reading for a whole gamut of people - from policy makers to care home managers, from chief executives of busy hospitals to GPs, specialised palliative care teams to social workers. Once read, all these people should unite with older people themselves to force through a cultural change that allows older people to have the care, the honesty and the kindness they have every right to expect - and which this report makes clear is sadly lacking." Baroness Julia Neuberger