A time and place: what people want at the end of life

A time and place: what people want at the end of life

Ryder S; Wood C; Salter J

2013

older people; end of life care; user views; surveys; focus groups; personalization; choice

This report investigates the elements of care that are important to individuals at the end of their life. It argues that for too long the focus has been where people want to die rather than how. It delves deeper into the components of care that people feel are important, and explores more fully what each of these means. There were three phases to this piece of research. The first involved in-depth interviews with five experts in the fields of palliative and end of life care, to get a sense of how, in their professional opinion, place and preference are currently shaping services for people approaching the end of life, the appropriateness of this, and the capacity of different care settings to deliver peoples’ preferences. The second phase involved commissioning a survey of 2,038 members of the public, in which people were asked to prioritise aspects associated with a good death (things like being free from pain, being surrounded by loved ones, and having dignity and respect) the things that would be important to them personally during their final days of life. To understand how these preferences map on to different locations, people were then asked how well they felt the same list of features were delivered across four different end of life care settings – home, hospital, hospice and nursing or residential care home. The resulting analysis was able to compare peoples’ answers to each of these questions in relation to their previous experience of spending time with a family member or friend during their final days of life, and where this occurred. Finally, a focus group was hosted, with nine bereaved relatives of people who had died in different locations (in hospital, in a hospice, or at home), to explore how their expectations of dying in different places – both positive and negative – were met, and where the reality differed from their expectations.

2013

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