In research first published in November 2021, the Marie Curie Research Centre at Cardiff University questioned 8,077 UK adults across the UK to see what they thought about end of life care and support.
Here’s four of the things that came out of the survey about end of life care services.
1. We think care at the end of our lives is just as important as at other stages
The survey found 77% of people think end of life care should be given equal priority in the NHS as care for people in any other stage of life.
End of life care involves treatment, care and support for people who are nearing the end of their life. It’s an important part of palliative care, which is the name for treatment, care and support for people with a life-limiting illness, and their family and friends.
We clearly think this is important. But at the moment, this isn’t reflected in the reality of the UK healthcare system. Read more about how the end of life sector needs to be made fit for the future.
2. We really value our own view when it comes to what we want
The research also showed seven in ten people believe their preferences around death and dying should take priority over the wishes of their next of kin or their doctor’s advice.
Everybody is different, and what matters most to us at the end of life is deeply personal. Whether or not someone’s wishes and preferences are respected as they’re dying can have a huge impact on someone’s final months, weeks and days.
This result shows how important it is to give people living with terminal illness more of a say in the care and support that they receive.
We’re currently campaigning for a change to the draft Health and Care Bill to give everyone approaching the end of life in England the right to have a say in their end of life care needs, wishes and preferences. Please sign the petition if you agree.
3. When it comes to the practical things, we put the need for trained carers at the top
We asked people to rank the top three practical things they’d expect to need in the last years of life, and 57% put having a trained carer nearby. Next came having privacy (55%) and after that having access to professionals for last minute concerns about family or legal affairs (47%).
This shows how much we value having the right people near us when we’re dying. Caring for people at the end of life is skilled work and it’s what Marie Curie Nurses and Healthcare Assistants do every day and night.
4. Although we know talking and planning about end of life is important, we don’t do very much of it
While most people in the survey think it is important to share future health and care preferences before they get seriously ill, just 14% of respondents have done this themselves.
Talking about these things can be tricky, but we can help. Visit our Talkabout blog to find inspiration and support for starting the conversation, download a planning checklist or order some conversation cards to help you
Professor Annmarie Nelson, Scientific Director at the Marie Curie Palliative Care Research Centre, Cardiff University