One in five dying patients receive treatment they would not want, say loved ones

People who record their end-of-life wishes 41% more likely to have a good death

NHS must provide more support to healthcare professionals and patients

Ground-breaking research, “Plan Well, Die Well”, published today by the charity Compassion in Dying revealed that one in five dying patients receive treatment their friends and family say they would not have wanted, with almost half (47%) feeling their loved one had a bad death. The results are based upon a YouGov poll of around 2,000 British adults and an analysis of users of Compassion in Dying’s free information service.

The YouGov research found that having end-of-life wishes recorded on their medical records can make a crucial difference in having the ‘good death’ the dying person would want. Where wishes of patients were recorded, they were 41% more likely to be judged by loved ones to have died well. Where such wishes were not recorded, loved ones were 53% more likely to feel that the patient received treatment they would not have wanted. Findings also suggest that recording end-of-life wishes could reduce avoidable hospital admissions.

Analysis of the thousands of enquiries to Compassion in Dying’s information service has shown that one of the key barriers to recording end-of-life decisions is the lack of a formal centralised system for recording end-of-life wishes, lack of awareness among health professionals and a lack of support to help people complete advance planning documents. The report contains recommendations for the NHS, GPs, Royal Colleges and commissioners.

Davina Hehir, Director of Policy at Compassion in Dying, said:

“It is incredibly shocking that so many people say that their dying friend or relative received medical treatment that they did not want. Compassion in Dying’s free information service provides support to over 12,000 people a year to have their wishes for the end of the life formalised in Advance Decisions, but we know this is only a small fraction of those who would benefit from making such plans.”

“This research demonstrates that recording your wishes in advance does, however, make it significantly more likely you’ll have a good death – one where you receive the treatment that is right for you. We therefore encourage everyone to ensure they access the free resources and support we have made available to ensure their wishes are not only known, but legally binding.”

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Notes for the editor:

All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 3,304 adults of which 2671 chose to answer these questions; 1937 had a close friend/relative who passed away from a long/short illness. Fieldwork was undertaken between 29th April – 1st May 2015. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).

The YouGov results can be viewed here.

The findings in the report also draw on responses to surveys of Compassion in Dying’s service users between May 2012 and October 2014.

Compassion in Dying

Compassion in Dying is a national charity (no. 1120203) that aims to support people at the end of life to have what they consider to be a good death by providing information and support around their legal rights and choices. We are a leading provider of free Advance Decisions in the UK and we also conduct and review research around patient rights and choices in end-of-life care.

Compassion in Dying is the sister organisation of Dignity in Dying and was set up to help people exercise their rights and choices under the current law. The charity does not campaign for a change in the law on assisted dying.

Advance Decision

An Advance Decision allows you to record any medical treatments that you do not want to be given in the future, in case you later become unable to make or communicate decisions for yourself. It will only be used if you cannot make or communicate a decision for yourself. The legal name is an Advance Decision to Refuse Treatment, and it is also sometimes called a Living Will or an Advance Directive.

For media enquiries please contact Compassion in Dying Press Officer Mickey Charouneau: michael.charouneau@compassionindying.org.uk / 020 7479 7732.