This year marks the fifth anniversary of the Dying Matters Coalition, set up by the National Council for Palliative Care to break society’s taboo about talking about dying and to encourage more people to make their end of life wishes known.
Since it was set up Dying Matters has gone from strength to strength, with membership currently standing at around 30,000 including funeral directors, care homes, hospices, charities, community groups and members of the legal and financial sectors. We’ve been delighted with how Dying Matters members, including Kings Court Trust, have truly embraced the coalition’s work and there’s no doubt that our profile and reach has substantially grown.
However, there’s still a long way to go and the need for a national conversation about dying remains.
For many people talking about dying and facing up to their own mortality remains the final taboo, something either to be ignored completely or postponed indefinitely for a day that many of us still refuse to believe will ever come.
As British Social Attitudes (BSA) research commissioned by Dying Matters last year showed, there remains a mismatch between what we say we feel comfortable doing and what we actually do. While the majority of us say we're comfortable talking about dying, the reality is that most people are still shunning important conversations and practical actions to manage their end of life care and final affairs.
The research found that just one in nine people have written down their funeral wishes/made a funeral plan, just over one in three people have a will and less than a third say they have registered as an organ donor or have a donor card. Moreover, despite heightened public anxiety over care of the dying, just 5% of people have set out how they would want to be cared for at the end of life if they couldn't make decisions themselves. The research also revealed a major mismatch between where people want to die and current trends in terms of place of death. Almost half of us die in hospital – but just 7% of us say that’s where we would want to die.
The research did find encouraging signs that older people are becoming more confident in talking about dying and increasingly willing to make their wishes known. But we still need to do much more to lift the taboo which prevents people from talking about what they want, and which makes it so much harder for people who are bereaved. We plan for other important parts of life but put our heads in the sand when it comes to dying, even though it is inevitable.
Whilst many people clearly do want to make things easier by discussing their wishes, millions of people are not putting this into action. Yet, if we were all able to discuss our wishes and make plans in a more confident way it's likely we would see huge improvements in people's experiences at such an important time for them and those close to them.
That’s why we’re hoping this year’s Dying Matters Awareness Week will be the biggest and best yet.
With a theme of Dying Matters: You Only Die Once (#YODO) we’re encouraging people across the country not to leave it too late to write a will and register it, record their funeral wishes, plan their future care and support, consider registering as an organ donor and telling their loved ones their wishes.
As part of Dying Matters Awareness Week 2014, Kings Court Trust is taking part in an event in Bath on the evening of Thursday 15th May, providing the opportunity to find out "everything you ever wanted to know about death and dying but were too afraid to ask." Please visit the Centre of Death and Society's website for full details.
Joe Levenson is Director of Communications for the Dying Matters Coalition and the National Council for Palliative Care. To find out more about Dying Matters please visit www.dyingmatters.org or call 08000 21 44 66. @DyingMatters #YODO