Millions leaving it too late to discuss dying wishes
The study, which was released to coincide with our Awareness Week, which ran from 12-18 May, found that discussing dying and making end of life plans remain a taboo for many people.
The research, carried out by ComRes, found that the vast majority of the public (83%) believe that people in Britain are uncomfortable discussing dying and death. More than half of those with a partner (51%) say they are unaware of their end of life wishes. Only 36% of adults have written a will, while just over a third (34%) have registered as an organ donor or have a donor card. Only 29% of people have let someone know their funeral wishes. Meanwhile, just 6% of the public have written down their wishes or preferences about their future care, should they be unable to make decisions for themselves.
It also appears that people are more comfortable paying tribute to those who have died than talking about their own wishes: only 21% of British adults say that they have discussed their end of life wishes with somebody, while 27% say that they have posted an online/social media tribute to someone who has died. The survey also looked at the growing issue of people’s digital legacy. Despite widespread online and social media use, the majority of people (71%) have never thought about what would happen to their digital legacy, such as social media and online accounts, online photos and music. When asked, more than one in ten of people (11%) did however say they would want a friend or family member to keep updating their social media accounts on their behalf after they die.
It’s not just the public who are failing to talk about dying. A quarter of UK GPs (25%) did not report having initiated a discussion with a patient about their end of life wishes – even though NHS figures show that on average 20 of a GP’s patients die each year. Although better prepared than the public, just 40% of GPs have talked to someone about their own end of life wishes, 57% have written a will, 57% have registered as organ donors/have a donor card, 33% have let someone know what their funeral wishes are and only 8% have written down their wishes about their future care.
Despite this widespread reluctance to talk about dying and plan ahead, 80% of the public believe all adults should be required to have a will to avoid disputes after they have died. There’s also a real desire for doctors to receive support in talking about dying: 90% of the public agree that all healthcare professionals should receive compulsory training in how to talk sensitively to people who are dying and their families.
The research also finds that given the choice, just 1 in 100 GPs and 6% of the public would choose to die in hospital, with home being by far the most favoured option. But despite more than seven in ten of British adults (72%) wanting to die at home, NHS figures show around half of the 500,000-plus people who die each year in Britain continue to do so in hospital. However, just 10% of British adults say that the most important factor to them for their end of life care wishes is where they would want to be cared for and die, compared to being pain-free (29%), followed by being with family and friends (21%).
Speaking today, Claire Henry, Chief Executive of the Dying Matters Coalition and the National Council for Palliative Care, said: "Dying is one of life’s few certainties, but many of us appear to be avoiding discussing it or in denial altogether. Talking more openly about dying and planning ahead is in everyone's interests, as it can help ensure we get our wishes met and make it easier for our loved ones. You only die once, which is why it’s so important to make your wishes known while there’s still time."
Professor Mayur Lakhani, a practising GP and Chair of the Dying Matters Coalition and the National Council for Palliative Care, added: "Discussing dying is rarely easy, but unless we have the conversations that matter we’re unlikely to get the right care and support. Although it’s encouraging that increasing numbers of doctors are discussing end of life wishes with patients to help get them the right care and support, there’s still a long way to go. What we need now is a national conversation about dying, so that healthcare professionals and the general public become more comfortable in discussing dying, death and bereavement. Dying matters, so let’s talk about it."