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

End of life care policy and practice has, for some years, focused on ensuring people die in their preferred place of death and usually at home. But this focus on where people die – rather than what they want at the end of life – has inhibited personalisation and informed choice for patients and their families. It has led to a lack of proper scrutiny of the experience of dying at home and left other settings neglected when it comes to developing them as good places for people to die. Moreover, it sits uncomfortably with the wider shift towards achieving outcomes across health and social care, and is no longer sustainable in the face of demographic change.

And yet, it is understandable. The popular preference for dying at home – the least resource intensive form of support – creates a convenient alignment, where reducing healthcare costs can be achieved while supporting peoples’ preferences. It means there is little incentive to question why exactly it is that people say they want to die at home. If this synergy had not existed – and the majority of people had expressed a wish to die in hospital, for example – it is likely that more attention
would have been paid before now to why this preference was expressed, and how best practice from hospital settings could be replicated in lower-cost settings.

As such, we know many people want to die at home – but we know very little about why.

In this report, for the first time Sue Ryder seeks to answer this question. It unpicks the relationship between people’s preferred place of death and the outcomes people value at the end of life. We identify what outcomes people prioritise at the end of life, how they associate these with different places of death (hospice, hospital, care home and their own home) and whether first-hand experience of these locations changes peoples’ perceptions of what care they can offer.