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 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, 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: “We’d urge everyone to become more comfortable talking about what they would wish for themselves at the end of life as we know this can aid the conversations we initiate with patients. We have seen care professionals grow in confidence initiating conversations about end of life care needs, but there is still some way to go for it to be the norm. It's essential we support patients and their loved ones through this journey and start conversations much earlier so that care can be better planned in advance.”
Dr Catherine Millington-Sanders, RCGP & Marie Curie National Clinical Lead for End of Life Care (EOLC) said: “When someone is ill and dying, the person and those important to them should not have to think about how to get the best care for them in the last few months and weeks of their lives. For care to be planned and delivered in the best possible way, having 'what matters most' conversations early with their GP and community teams is vital to help plan the support they want to live well and die well.
“Having discussions about end of life care, including ‘what matters most’ conversations in an open way, will help GPs and healthcare professionals to ensure they have all of the necessary information to plan and deliver personalised end of life care, taking into account a person’s wishes and preferences. This is why the work by organisations such as Marie Curie to address and remove the stigma around discussing death is so important. It can reduce the distress around talking about death and illness, and ensure people receive the end of life care they want and deserve.
“GPs and community teams play a vital role in caring for people and their families at the end of life. It is essential that GPs are fully supported and resourced to deliver this sensitive and essential care. But in order to support what matters most to our patients, we need to urgently see government investing into general practice and our community teams in order to best support people at the end of life.”
View the Marie Curie Life’s Questions TV advert created by Saatchi & Saatchi at mariecurie.org.uk/advert