Millions leaving it too late to discuss dying wishes
New research for the Dying Matters Coalition shows that the majority of people in Britain have not discussed or made any plans for when they die. As a result, they are risking not getting appropriate end of life care and making it harder for their families to deal with bereavement.
The British Social Attitudes (BSA) research, which was released to coincide with Dying Matters Awareness Week which ran from 13 - 19 May, found encouraging signs that older people are increasingly taking action to make their end of life wishes known, but that most people are leaving it too late to face up to their own mortality. This is despite the fact that almost two-thirds of us have been bereaved in the last five years.
The study revealed that although 70 per cent of the public say they are comfortable talking about death, most of us haven’t done anything to discuss our end of life wishes or put plans in place. It also found that only just over one in three people have a will, down on 39 per cent in 2009, with the impact of economic pressures being a possible cause of this decline. Fewer than a third of people have registered as an organ donor or have a donor card – although the number of organ donations after death has risen by 50% since 2008, more than 1,000 people on the transplant waiting list die each year. Only 11 per cent of people have written down their funeral wishes or made a funeral plan.
Despite heightened public anxiety over care of the dying, including concerns about the implementation of the Liverpool Care Pathway, and the Francis Inquiry into failings at Stafford Hospital, the British Social Attitudes findings reveal that just one in twenty of us has an advance care plan, which sets out how we would want to be cared for if we couldn’t make decisions ourselves, for example, would we want to be resuscitated.
The research also revealed a major mismatch between where people want to die and where people do currently die. Latest NHS figures show that more than half of us die in hospital. Yet today’s research shows that just seven per cent of us would prefer to die in hospital, compared with two-thirds who would prefer to die at home.
This is the first time the authoritative British Social Attitudes survey has asked these questions about dying, although comparisons can be made with similar research carried out in 2009. This shows that older people are becoming more likely to make their end of life wishes known. If applied to the whole British population, today’s findings show that an extra 200,000 people aged 55-75 reported feeling comfortable talking about death in 2012, when the BSA research took place, compared with 2009. It also shows that 400,000 more people aged 55-75 have discussed their end of life wishes or have some written plan for end of life in 2012, compared with 2009.
Eve Richardson, Chief Executive of the Dying Matters Coalition and the National Council for Palliative Care, said that while the findings were encouraging, it is clear more needs to be done. She said: “It’s encouraging that older people are becoming more comfortable discussing dying and their end of life wishes, but as a nation too many of us are still shunning the conversations that can help avoid heartbreak and regret at the end of life. You don’t have to be ill or dying to make plans for your future, which is why we are calling on people across the country to take practical steps by writing a will, recording their funeral wishes, planning their future care and support, considering registering as an organ donor and telling loved ones their wishes.”
Professor Mayur Lakhani, Chair of the Dying Matters Coalition and a practising GP, said: "There are powerful benefits of having early conversations with people who are approaching the end of their life, as it puts them in control and gives a chance to resolve any life issues. It also means that plans can be made for people to get the care and support that is right for them.
"While more of us than ever are living to a ripe old age, people are also living for longer with dementia and other life limiting conditions, which makes it especially important to talk more openly about the care and support we would want. It's only by having the conversations that matter and planning ahead that care of the dying will be improved and people will get their end of life wishes met.”
Penny Young, Chief Executive of NatCen Social Research, added: “The findings are an excellent example of what the British Social Attitudes survey is for. Most people in our study have discussed dying and many have strong opinions about the end of their life, yet very few have taken any steps to prepare for death. Understanding public attitudes and behaviour around this important public policy issue is essential for organisations like the Dying Matters Coalition if they are to raise awareness and influence policymakers.”