Many people are having to make “unacceptable trade-offs” between passing away in their own home and receiving pain-free care at the end of their life, a report has warned.
The report for the charity Sue Ryder, titled “A Time and a Place”, suggests that too many people are willing to go without pain relief in order to die at home with their family around them.
The study, carried out by the Demos think-tank, discovered that 62% of the participants want to die in their own homes and 78% said managing pain is important, but just over a quarter (27%) believe they can actually be free from pain at home.
The statistics indicate that many people are compromising and not making positive decisions about how they will spend the end of their lives. They also suggest that people are less worried about medical concerns than they are about their personal and environmental wishes.
Although pain relief was the top priority, 71% of the respondents said being surrounded by family and friends is important and just over a half (53%) are in search of a private and dignified death. Being able to pass away in a familiar location and in a peaceful manner is significant for 45% of those surveyed.
The findings have prompted Sue Ryder to call on the government and the NHS to make sure everyone’s care needs are met as they near the end of their lives. It wants reforms for more flexible and varied care and support in people’s homes and help for families who are looking after them.
The charity also wants to see better communication and health care planning, with training for health professionals and local councils to make sure people are presented with choices for the end of their life.
Sue Ryder is concerned that dying at home does not always ensure “a good death”, according to its chief executive Paul Woodward.
He said it is important to consider how people wish to pass away and not just where. It is important to find out what people want to make sure they are provided with the best support, he said.
Janet Davies, executive director of nursing and service delivery at the Royal College of Nursing, said: “This survey raises considerable concern, but sadly it is not surprising.
“Too often, people are not able to access expert advice, care and pain relief, and it is particularly distressing that many people who are dying are brought into hospital out of hours and against their wishes.”
She added: “Only by ensuring that there is a fully trained nursing service available in the community around the clock can we ensure that all patients receive the high quality care associated with that in hospices in their own homes.”
Simon Chapman, director of public and parliamentary engagement at the National Council for Palliative Care, said: “This is further and powerful evidence showing that whilst the majority of us want to die at home we cannot be confident that we will get the right pain relief and round the clock access to care and support.
“This report should be an alarm call to the new clinical commissioning groups and policymakers that they need urgently to redesign services so people at the end of their days can get the support they need, wherever they have chosen to be cared for and die,” he said.
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