Monday 18 December 2017
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Planning end of life care still too difficult for some

Millions of people in Britain risk missing out on having their end of life wishes met and leaving their affairs in a mess for their families to sort out because they haven’t planned for their death, according to a new study released by the Dying Matters Coalition.

Today’s ComRes research, released to coincide with Dying Matters Awareness Week (18-24 May) finds that although the majority of us think it is more acceptable to talk about dying now than it was 10 years ago, discussing dying and making end of life plans remains a taboo, as a majority think that people in Britain are uncomfortable discussing dying, death and bereavement.

• Although a third of British adults (32%) think about dying and death at least once a week, 72% of the public believe that people in Britain are uncomfortable discussing dying, death and bereavement.
• Only 35% of the public say they have written a will, 32% that they have registered as an organ donor or have a donor card, 31% that they have taken out life insurance, 27% that they have talked to someone about their funeral wishes and 7% that they have written down their wishes or preferences about their future care, should they be unable to make decisions for themselves.
• Just 18% of British adults say they have asked a family member about their end of life wishes.
• Amongst parents who had children under 18 living with them, less than a third (28%) say they had written a Will, risking wishes about who would look after the children and inheritance not being met. Just 40% of parents who had children under 18 living with them said they had ever taken out life insurance.

Despite this failure to talk about dying and plan ahead, 71% of the public agree that if people in Britain felt more comfortable discussing dying, death and bereavement it would be easier to have our end of life wishes met. 

The research also finds that the majority of people (79%) agree that quality of life is more important than how long they live for.  Only 2% of over 65s disagree that their quality of life is more important to them than how long they live for. Just 13% of people surveyed said they would like to live forever and only 8% said they would like to live to over 100. The most common age at which people would like to die is 81-90 (27%). Despite the fact that life expectancy is on the rise, only 6% of people aged over 65s want to live to over 100.

When asked about factors to ensure a good death, being pain free was the most important option, chosen by a third of people (33%), followed by being with family and friends (17%), retaining your dignity (13%), being cared for and able to die in the place of your choice (6%), being involved in decisions about your care, or if you are not able to for family and friends to be involved (6%) and having your religious/spiritual needs met (5%).

The survey also finds that three-quarters of people (75%) agree that providing end of life care should be a fundamental part of the work of the NHS, with almost two-thirds (62%) agreeing that end of life care should be a priority for the new Government.

Speaking today, Claire Henry, Chief Executive of the Dying Matters Coalition said:

“We need to change the nation’s approach to dying, so that all of us become better at making our end of life wishes known and asking our loved ones about theirs. Talking about dying and planning ahead may not be easy, but it can help us to make the most of life and spare our loved ones from making difficult decisions on our behalf or dealing with the fallout if we haven’t got our affairs in order.”

Professor Mayur Lakhani, a practising GP and Chair of the Dying Matters Coalition added:

“There are encouraging signs that talking about dying is becoming less of a taboo than previously, but too many people are continuing to avoid facing up to their own mortality and are not putting plans in place. The public and health professionals alike need to become more comfortable talking about dying and discussion options for end of life care. We know that many people have strong views about their end of life wishes, but unless they talk about them and plan ahead they are unlikely to be met.”

Welcoming the findings Des Kelly OBE, NCF Executive Director, said:

“It is evident that most people recognise the vital importance of good end of life care which is an increasingly important part of work for social care providers as well as the NHS. However it is also clear that there is still some way to go to ensure that we know people’s wishes and preferences at the end of life.”

The Dying Matters Coalition (www.dyingmatters.org) aims to raise awareness about the importance of talking more openly about dying, death and bereavement and of making your wishes known in England and Wales. It is led by the National Council for Palliative Care, and has over 30,000 members including charities, care homes, hospices, GPs, funeral directors and legal and financial organisations. The National Care Forum (NCF) is proud to be a member of the Dying Matters Coalition.

The sixth annual Dying Matters Awareness Week runs from 18-24 May 2015. Dying Matters members across the country will be hosting hundred of events and activities, including death cafes, arts events, discussion events and open days www.dyingmatters.org/events. Dying Matters is holding its annual debate on Monday 18 May on the topic of “Is a good death possible?” Speakers are Chief Nursing Officer for England Jane Cummings, Dr Katherine Sleeman from the Cicely Saunders Institute, Dr Margaret McCartney and writer Tim Lott. Please get in touch for more information or a press place.

A wide range of information and practical resources to help people to talk more openly about dying and put their plans in place is available to download at www.dyingmatters.org