Stigma of talking about death causes people to miss out on care, says Marie Curie

The UK's reluctance to talk about death and low awareness of palliative care contributes to 1 in 4 people missing out on vital care at the end of their lives[i], says Marie Curie.

The end of life charity hopes to help break the persistent stigma around death to help people understand the care and support they might need at the end of their lives. In a recent survey[ii], despite living in pandemic times, around half of people in the UK (51 percent) think we don't talk enough about death and dying as a society.

The findings also reveal as many as a third of people, in the UK are not familiar with common terms used by healthcare professionals and others in care for dying people. Marie Curie says this means that people who need this vital care may not access it, or don't understand what care to ask for.

Among the words people didn't recognise were palliative care (31 percent), hospice care (32 percent) and end of life care (33 percent).

And when it comes to practical steps around end of life care and funeral planning nearly half didn't recognise Power of Attorney (44 percent) or Living Will (53 percent) and over three quarters weren't familiar with Advance Care Plan (77 percent). The lowest recognition was for the term used to describe written documentation expressing your health care wishes if you're not able to communicate them yourself; Advance Directive (87 percent).

The charity warns that our reluctance to think or talk about death and dying mean many of us feel deeply unprepared and distressed when facing the end of life, either for ourselves or our loved ones.

Chief Investigator Professor Annmarie Nelson, Scientific Director at the Marie Curie Palliative Care Research Centre based at Cardiff University's School of Medicine said:

"Our research clearly shows that as many as one in three people are unfamiliar with end of life care terminology, which is a barrier to accessing care or services. It is shocking to realise that over 30% of the population do not understand everyday language used by health and care professionals. This lack of a common language can lead to unnecessary confusion and distress at a time when important conversations are and should be taking place."

Marie Curie is highlighting its free phone line and web resources in its latest advert 'Life's Questions' in the hope it will encourage more people to contact them for practical and emotional support (0800 090 2309/ Mariecurie.org.uk/support).

Marie Curie is also calling for The Health and Care Bill, currently making its way through Parliament, to include a legal right for everyone in England to be offered a conversation about their personal needs, preferences and wishes for care at the end of life.

Julie Pearce, Marie Curie Chief Nurse and Executive Director of Quality and Caring Services, said: "The reasons many people say they haven't talked about their end of life wishes is because they feared the response they'd get from family or friends or couldn't find the right time. Yet many bereaved people tell us that they would have benefitted from hearing their loved ones wishes, especially around funeral planning.

"When you're facing a terminal diagnosis or in your last months, weeks or days it can be an emotive time and difficult to start those conversations. We know that it can be comforting and lighten the practical and legal burden on loved ones to know and be prepared when decisions need to be made. We know some questions are harder than others, but we'd urge everyone to become more comfortable by talking to those close to them about what they would wish for themselves.

Broadcaster, actress and novelist Janet Ellis is best known as a presenter of Blue Peter. Her husband John, died in July 2020 and due to covid restrictions the family had to delay his memorial service, holding it last month.

"With John's diagnosis I knew that we would probably not be a little white-haired couple together. But that didn't stop us from living our lives and enjoying our time. We were lucky that multiple times over our 35 years together we had the conversation about wishes and practical matters when one or other of us left first.

"Thirty years ago, after my mother's diagnosis, I didn't really understand the words 'palliative' and 'end of life care' when they were first used. They sounded scary - as though somebody would only be doing the bare minimum for your loved one and that you might not be included. I now know that's not the case. Throughout John's care his life, his wishes, needs and preferences were at the forefront and our family and friends were involved."

Ranbir Saib, 54, lives in Hayes, West London. Her 81-year-old mum Gurvinder Choda had Marie Curie nursing care, before she died at home in Southall in October 2019.

Ranbir said, "We were told mum was being moved over to palliative care about a month before she died. She was being discharged from hospital for the last time, and when they mentioned palliative care, I don't think I fully understood what that meant. When I asked, they said it's the last care in her journey and I thought of course it is, because she's elderly. I took it literally.

"When the Marie Curie nurse came over, she said do you know what palliative care means? She literally said, it means she will die. I think it was the first time that we all sat together as a family to think, how long do we have her?

"I called all the family around and I asked the Marie Curie nurse to explain what will happen next. That conversation really helped. It made us realise how limited our time was with mum. We started taking it in turns to sit with her and hold her hand. We had our conversations with her, even if she was asleep, we trusted she could hear us.

"If the Marie Curie nurse hadn't explained to me that mum was dying, there's a risk I would have missed her final moments."