Talking about death is still thought of as taboo or difficult and people are confused about how to make their final wishes.
These are among the top findings in a new report highlighting the choices for people approaching or planning end of life care published by Healthwatch Cambridgeshire and Peterborough.
The report, Empowering People at End of Life, showed that people living in the area were:
- not comfortable talking about death
- confused by the language and the steps they needed to take
- turned down by family members who often said it was “too soon” when trying to start end of life conversations.
The report, published today follows a big End of Life event in St Ives earlier this year, organised by Healthwatch for the four Cambridgeshire Adult Social Care Partnership Boards.
The boards make sure that people who use adult social care services are involved in decisions affecting their daily lives.
Over 130 people attended the day, which featured a keynote talk by retired Yaxley, Peterborough GP and cancer/palliative care expert Dr Phil Hartropp.
Only half the people attending had written a will and very few people had set up Lasting Powers of Attorney or so-called “Living Wills” (known as Advance Decisions) to help take control of the remainder of their lives and make sure their wishes are followed.
During the day, there were workshops on topics including Power of Attorney and the Mental Capacity Act and a range of information stalls.
Healthwatch – the independent champion for health and social care in the region – asked people about the conversations they have had about their own end of life choices. And what would make it easier to talk about.
People said they want
- Practical, easy-to-understand information
- An idea of what to discuss with their partners and families
- Simple explanations of legal processes and costs.
Sue told us …
“I found the End of Life event really thought-provoking,” said sandwich carer Sue Honour from St Neots. She cares for her daughter and husband and also offers emotional support and practical advice to her elderly parents and mother-in-law who live some distance away.
“It was such a good event as it clarified a lot of things I’d heard a bit about.
“It also made me have conversations with my mum and mother in-law and discuss what they would want rather than having to guess what their wishes might be when it is too late.
“It’s important for my daughter to be taken care of when I’m not around, so my husband and I really need to make a will and get everything in place to ensure that happens.”
Findings from the Healthwatch report have been shared with Cambridgeshire and Peterborough Clinical Commissioning Group’s End of Life working group.
Healthwatch has also made a list of local resources that empower people at the end of life for its Information Service.
Did you miss the End of Life event? It’s not too late to tell us about your experiences and ideas.
Share your story too
Help make your local NHS better for everyone in Cambridgeshire and Peterborough by sharing your views with Healthwatch.
- Call 0330 355 1285
- Text 0752 0635 176
- Email firstname.lastname@example.org
- Or feedback via our website
Download our report
Download and read the Empowering People at End of Life report below