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Families and carers would like more information from nurses on changes near end of life

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A charity has called for “greater dialogue” between healthcare professionals and families about what to expect, and what they can do, as the death of someone close approaches.

One of the key concerns that people have when someone close to them is dying is not knowing the physical and mental changes to expect as death draws near, according to research by Sue Ryder.

“It’s important that frontline nurses are given adequate training in talking to people about dying and end of life”

Elise Hoadley

A survey of 1,000 bereaved adults found 44% of those with questions or worries wanted to know what changes to expect, such as fingers and toes becoming blue and cold or social withdrawal.

Other key questions and worries included whether to bring up difficult issues with their dying family member or friend before the end of their life – highlighted by 21% of respondents.

In addition, 58% were concerned about how to make someone more comfortable, 40% about the last words they should say to them and 36% on who should be there in the final moments.

A further 18% of respondents were worried about whether their friend or relative should die in a more comforting environment than a hospital ward.

“There’s a specific need for more information and communication about the physical and mental signs”

Heidi Travis

The charity also highlighted that advice on what to expect when death was near was in the top three most viewed information pages on its website during 2017.

Sue Ryder chief executive Heidi Travis said: “It’s really time to open up a national conversation on death and dying with greater education and dialogue.

“There’s a specific need for more information and communication about the physical and mental signs that may show that death is near,” she said. “This would help to prepare families with different ways they might respond and comfort their loved one.

“It could also prompt discussions about their last wishes and different ways to help them have a good death,” noted Ms Travis.

She highlighted that the National Institute for Health and Care Excellence had already published guidance and standards designed to ensure those nearing the end of their life, along with families and carers, were communicated with and offered information in an accessible and sensitive way.

Sue Ryder

Heidi Travis

Heidi Travis

“There are some very good examples of this happening – but we must ensure this is delivered consistently across the board where appropriate,” she said.

Elise Hoadley, director of the Sue Ryder Leckhampton Court Hospice, added: “It’s important that frontline nurses and health professionals are given adequate training in talking to people about dying and end of life.”

This should be as part of an overall local strategy, she said, as communicating with patients and their families about death and dying was “not easy for nurses or any member of the healthcare team”.

“Our experience shows how important sensitive and timely communication can be for all concerned,” she said.

The charity noted that it had also produced some new information and advice for families and friends on what to expect, and ways to respond, when someone close to them was dying.

It covers a range of issues including knowing some of the “signs” that death may be nearing, different ways to provide comfort and support, and how to cope.


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