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MARIE CURIE: Stigma of talking about death has left people without vital care


Among the words people didn’t recognise were palliative care (31%) hospice care (32%) end of life care (33%).

87% of Britons are unaware of an Advance Directive - important documentation expressing healthcare wishes. Our reluctance to talk means many of us are deeply unprepared and distressed when faced with death, say Marie Curie.

Our reluctance to talk about death actually causes more heartache than comfort. Not talking about the inevitable can leave us feeling deeply unprepared and distressed when facing the end of life, either for ourselves or our loved ones.

New research reveals a third of people in the UK are unfamiliar with normal terms used by healthcare professionals and others in care for dying people. This inevitably leaves people without vital support as they’re unaware of what to ask for.

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

When asked about practical steps to consider around end-of-life care and funerals, nearly half did not recognise Power of Attorney (44%) or Living Will (53%) and over three quarters weren’t familiar with Advance Care Plan (77%).

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%).

Despite the results, around half of people in the UK (51 percent) think we don’t talk enough about death and dying as a society.

Marie Curie agrees and wants to help break the persistent stigma around death, end unnecessary suffering and encourage more people to talk about their feelings and wishes. They hope their latest advert ‘Life’s Questions’ will boost awareness of their free support line and web resources designed to offer practical and emotional support.

The services provided can help lighten the emotional and practical burden faced by thousands of people every day and offer support and signposting around life’s harder questions and difficult topics.

The UK’s leading end of life charity 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.

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 until October this year.

Matthew Reed is the CEO of Marie Curie and is passionate about social justice and ensuring that everyone who is – and their families and loved ones – have the very best holistic support and - care they can.

Dr Sam Royston is Director of Policy and Research at Marie Curie and author of the book “Broken Benefits: What’s gone wrong with welfare reform”.

Julie Pearce is the Chief Nurse and Executive Director of Quality and Caring Services for Marie Curie. During her career in the NHS Julie worked in a number of teaching hospitals in Leeds, London, Birmingham, Cardiff, and Southampton. Julie specialised in intensive and critical care nursing and combined a clinical and teaching role for many years.  She also volunteered in her local IUC during the height of the pandemic.

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 on 25 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.”

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