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Less than 1 in 10 people record end of life wishes, new poll finds

31 May 2018

Compassion in Dying have launched a new publication to help people think about their priorities for the future, after their latest poll found that while most appreciate the importance of recording and sharing their wishes, few have done so.

The guide, entitled Planning ahead: My treatment and care, has been officially endorsed by the Royal College of Nursing, and it aims to support people to discuss and record their wishes so they can get on with living life, knowing they have prepared for the future.

Polling conducted by YouGov1 and commissioned by Compassion in Dying has found that 87 per cent of the public feel it is important that healthcare professionals caring for them know their wishes for future treatment. Top of their end-of-life concerns were ‘to have my symptoms and pain well controlled’ and ‘to be able to maintain my dignity and independence.’ Just one in ten said they would want a doctor to make final decisions regarding their treatment and care if they were to become unable to make these themselves.

Despite this, less than one in ten people have recorded their wishes in a legally binding way, either by making an Advance Decision (‘Living Will’) which allows someone to state whether they want to refuse life-prolonging treatment in certain circumstances, or by making a Lasting Power of Attorney for Health and Welfare to appoint a trusted person(s) to make healthcare decisions on their behalf. This means that doctors may be left to make important decisions without knowing a person’s values and preferences.

Peter Coe, 69, from Lyme Regis, whose experience is featured in Planning Ahead, is well aware of the benefits of discussing and recording healthcare wishes with loved ones. He explained: 

"My dad had memory problems and wanted me to support him in enforcing his healthcare decisions and ensuring that his choices were undertaken.  He made me his attorney for health and welfare, which provided an opportunity to discuss his wishes for the future.

“Sadly, in 2016 we were told his kidneys had failed and dad did not have the capacity to make a decision over whether to opt for dialysis. We were told it might delay the effects for a few months but would involve arduous trips to the hospital several times a week. At the time dad was living alone with support for daily tasks from his carers and me, and being able to spend his days in the garden, watching the sea, was very important to him. He had previously discussed what decision he would have made in such circumstances. I therefore felt confident that I could make the decision to refuse dialysis on his behalf, while ensuring he was comfortable and pain-free.

“It was a hard decision to make and I had to discuss it thoroughly with the doctors, but it would have been much more difficult if I had not spoken to dad about his priorities. I knew it was what he would have wanted and as a result he was able to spend his final months doing the things he loved most, seeing his family and enjoying his garden."

Planning Ahead explains in simple language the information people need to understand how treatment and care decisions are made, how they can plan ahead to ensure they stay in control of these decisions, and who to talk to and share their wishes with. It also includes answers to the common concerns that Compassion in Dying hears on its free information line such as, ‘can I have a ‘Living Will’ as well as a Lasting Power of Attorney for Health and Welfare?’, ‘can anyone override my wishes?’, ‘how will it feel to plan ahead?, and ‘is it expensive?’

Natalie Koussa, Director of Partnerships and Services at Compassion in Dying, said:

“We produced Planning Ahead because sadly any of us could become unwell and unable to tell the people around us what we do or do not want. By making plans now, you can record your preferences for treatment and care so that if you are ever in that situation, your wishes are known and can be followed. It gives you control and allows you to express what is important to you, providing peace of mind. Planning ahead means you can get on with living, safe in the knowledge that if an illness or injury leaves you unable to make decisions about your treatment and care, it will be easier for those around you to respect and follow your wishes.

“We are thrilled to have official endorsement from the Royal College of Nursing and the backing of other leading organisations in the sector, such as the Alzheimer’s Society. We hope Planning Ahead will be a valuable tool for individuals, their loved ones and health professionals alike.”

Commenting on this, Amanda Cheesley, Professional Lead for Long Term Conditions and End of Life Care at the Royal College of Nursing, said: 

“We are delighted to endorse Planning Ahead. Discussing death with family and friends and letting them know our wishes can help ensure people’s experience of care at the end of their life is as personal and compassionate as possible.   

“The more we make talking about future treatment and end-of-life care a normal and sensible thing to do, the less frightening it will be for patients. This useful and easy to read booklet will be helpful to many people.”

[1] All figures, unless otherwise stated, are from YouGov Plc.  Total sample size was 1,680 adults. Fieldwork was undertaken between 15 - 16 April 2018.  The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).

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