‘Focus on dying at home has inhibited development of end-of-life care’

A preoccupation with where people die – rather than what they want at the end of life – has inhibited personalisation and informed choice for patients and families, says report

People are being forced to make unacceptable trade-offs between dying in the place of their choosing or being free from pain and discomfort, according to research published on Tuesday.

A Time and a Place: What People Want at the End of their Life (pdf), by Demos and the charity Sue Ryder, found 78 per cent said their main priority at the end of their lives was a pain-free death. This was followed by being surrounded by loved ones (71 per cent) having privacy and dignity (53 per cent) and being in familiar, peaceful surroundings (45 per cent).

However, while 63 per cent of people wanted to die at home, only 27 per cent felt that home was a place where they would be free from pain during their final days.

The report concluded: “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.”

The report recommended that more specialist medical care to manage pain needs should be offered in the comfort of people’s homes during their last few months, weeks and days of life. This should, the report said, be supplemented by increased emotional support for people and families in a home-care setting.

Sue Ryder has called on the government, NHS England and commissioners to end their preoccupation with where people die and instead implement a series of reforms to ensure everyone’s wishes for care are met at their end of life.

“Everyone deserves a pain-free death, in the place of their choosing and to be surrounded by loved ones,” said Paul Woodward, chief executive at Sue Ryder. “We are concerned that government and decision-makers including clinical commissioning groups and GPs are using ‘dying at home’ as a proxy for quality. This is not good enough.  Dying at home does not always guarantee a ‘good death’.”

Woodward added that Sue Ryder was committed to providing ‘hospice at home’ and community-based clinical nurse specialists who bridge the gap between pain and symptom management at home and the need to be surrounded by loved ones in familiar settings. “Not only do services like this need to be much more widespread,” said Woodward, “but health professionals also need to provide more information about end of life care options to ensure people can die pain free in the care setting of their choice, including at home.”

A Time and a Place is the second report to be launched as part of Sue Ryder’s campaign, Dying isn’t Working. The first report, published in June, highlighted inequalities in access to end of life care due to factors including age, background, location and type of disease.

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