Majority of people want end of life care being made a priority

The research, released to coincide with Dying Matters Awareness Week (14-20 May 2012), finds that although more than half of Brits (54%) have been bereaved in the last five years and a third think about dying and death weekly and 11% say they think about it daily, discussing dying and making end of life plans remains a taboo for many people, including doctors.

More than two-thirds (71%) of the public agree that people in Britain are uncomfortable discussing dying, death and bereavement. This is a view shared by GPs, with 79% saying that people in Britain are uncomfortable discussing dying. Talking about dying, even with family and friends, is also a taboo for many. A quarter (25%) of Brits said they felt uncomfortable discussing dying with those close to them. Only sex is more of a taboo subject than dying, with 39% of Brits reporting feeling uncomfortable discussing sex with family and friends, compared with money (23%), religion (14%) politics (13%) and immigration (11%).

Despite this widespread reluctance to talk, most people can see the benefits of more open discussion about dying: 78% of the public and 88% of GPs agree that if Brits felt more comfortable discussing dying, death and bereavement it would be easier to have our end of life wishes met.

The research, which was carried out for the Dying Matters Coalition by ComRes, found that despite a reticence to talk about it, British people do have serious concerns about dying:

• 83% agree end of life care for older people and people who are dying should be as much of a priority for the NHS as care for newborn babies. People aged over 65 are most likely to think this (94%) and people aged 18-24 the least likely (68%).
• Over half of all people (59%) say that on the whole people who are dying in Britain are not treated with dignity and respect by health and care professionals.
• 82% say they would be concerned about being a burden on those close to them if they were dying, and 74% would be concerned about what would happen to their family after their death.
• Just 25% of people who have been bereaved said they received the support they needed.
• 35% of people say they wouldn’t be able to afford the funeral if someone close to them died tomorrow, 28% wouldn’t know which authorities to notify and 24% wouldn’t know how to organise a funeral.

Despite these concerns, just 27% of the public have asked a family member about their end of life wishes and only 31% have talked to someone about their own end of life wishes. Just 37% of the public have written a will, 31% have registered to become an organ donor or have a donor card and only 8% have written down their wishes or preferences, should they become unable to make these decisions themselves.

It is not just the public who are failing to talk about dying. Although on average 20 of a GP’s patients (1% of their patient list) will die each year, many GPs are not leading by example. More than a third (35%) of GPs have not initiated a discussion with a patient about their end of life wishes. Only 33% of GPs have asked a family member about their end of life wishes and 35% have talked to someone about their own wishes. Just 56% of GPs have written a will, almost half (48%) have not registered to become an organ donor or do not have a donor card and only 7% have written down their end of life care wishes or preferences. The research also found 22% of people wouldn’t feel comfortable discussing their end of life wishes with their GP.

Studies show that many people are currently missing out on getting their end of life wishes met. Although 70% of people in England would prefer to die at home, more than half of deaths take place in hospital.

Eve Richardson, Chief Executive of the Dying Matters Coalition and the National Council for Palliative Care said: “Every minute someone in England dies, but many people including GPs still feel uncomfortable discussing end of life issues. Talking about dying is in everyone’s interests. That’s why we want as many people as possible to discuss their end of life wishes and to take small actions such as registering to become an organ donor, writing a will or making an effort to speak to anyone they know who is nearing their end of their life or who has been bereaved.”

Professor Mayur Lakhani, GP and Chair of the Dying Matters Coalition, added: “Talking about death is not easy and most people skirt around the issue and avoid the topic. Although there are encouraging signs that attitudes are changing for the better most people still have not discussed their end of life wishes with anyone. Until we have a more open approach to discussing dying we risk continuing to see people die without their wishes being met. By raising the issue of end of life care earlier with people who have advancing disease, doctors can also play a key role in ensuring people get the type of end of life care and support they need and want.”