Too many people receiving unwanted treatment at end of life, charity warns

• One in four (26%) people who said they had a close relative or friend who died from a short or long term illness said that person received medical treatments they would not have wanted. This includes 9% who said their loved one received “medical treatment they would not have wanted” and 17% who said their loved one received “both medical treatment they would have and medical treatment they would not have wanted”.
• Findings revealed as part of landmark new report exposing culture of “over-treating and under-talking” at end of life.

A landmark report by the UK’s leading end-of-life planning charity has revealed that large numbers of people are experiencing longer and more difficult deaths than they need to, due to “a culture of over-treating and under-talking” at the end of life.

The report – Rethinking the UK’s approach to dying – Lessons from an end of life helpline – was compiled by national charity Compassion in Dying, based on an analysis of 5,000 calls and emails to its free information line for dying people and their loved ones and new polling of the general public by YouGov.

Over a two-year period, those contacting the charity spoke repeatedly about feeling they had to ‘fight’ a medical system that often prioritises extending life above all else, without always considering an individual’s wishes.

Current law, policy and guidance emphasises the importance of shared decision making. Yet the research highlights that too often people at the end of their lives struggle for their wish to refuse treatment to be understood or respected.

In addition, Compassion in Dying commissioned YouGov to conduct a representative poll of 2,000 adults in Great Britain for their experience of end-of-life decisions. Key findings included:

• Eight in 10 people (83%) said they want to prioritise their quality of life over living longer (9%) in their last years of life.
• One in four (26%) people who said they had a close relative or friend who died from a short or long term illness said that person received medical treatments they would not have wanted. This includes 9% who said their loved one received “medical treatment they would not have wanted” and 17% who said their loved one received “both medical treatment they would have and medical treatment they would not have wanted”.
• Nine in 10 people (90%) said, if they had an illness which meant they were unable to communicate and make decisions about the treatment they were given, they would want final decisions about their treatment to be made by themselves, with decisions written in advance (43%) or by a loved one (a partner 30%, close family member 16% or friend 1%) acting as their representative. Only 3% of people would want these decisions left to a doctor.
• Despite this, only 5% of people have made a living will, also known as an Advance Decision to Refuse Treatment, and only 9% of people have a Lasting Power of Attorney for Health and Welfare.

In the report, Helen Hanrahan shared the story of her close family friend Beryl, a 73-year-old woman who was dying with a brain tumour. In the last week of her life, Beryl was forcibly sectioned and taken by police to a high security mental hospital, simply because she made a routine end-of-life decision to discontinue the feeding tube that was prolonging her life against her wishes.

Helen said:

“In her last six months, Beryl’s health started to get progressively worse and she kept saying this isn’t living, I’m just existing and I don’t want to do this forever.

“Beryl made the decision to refuse her feeding tube to avoid a prolonged death; a decision her long-time GP agreed she had capacity to make. She was weak and she was dying, but she was adamant in her choice. The problem started when another GP got involved and, instead of listening to her, they rang the mental health team and this began a huge snowball that we couldn’t stop.

“The next week was full of doctors and a psychiatrist visiting constantly. The first time they came they all agreed she had capacity to make this decision and was not depressed. The next day they suddenly decided the opposite and that Beryl should be taken to hospital immediately to reinstate her feeding tube.

“The next day, very late at night, the police, paramedics and social workers arrived to take the dying 73-year-old to a high security mental health hospital. They were not equipped to look after Beryl there. They never tried to reinstate her feeding tube; I couldn’t understand what they were doing keeping her there. Finally, she was allowed home, the palliative care team came out again, a syringe driver was fitted and she died three days later.

“Her wish to refuse treatment was so hard for the doctors to hear. No one wanted to put their head above the parapet and explain how they could support her to do this. As Beryl’s closest family, the whole experience was very traumatic.”

To tackle the problem, Compassion in Dying is calling on the Government, healthcare leaders and charities to make a series of practical, deliverable changes that will increase opportunities for people to consider and document their end-of-life wishes earlier and more routinely and support the healthcare system to respond to people’s wishes supportively, confidently and with compassion. The charity argues that this will contribute to a needed cultural shift in society and in healthcare, where decisions about treatment at the end of people’s lives are approached in a more realistic way.

Usha Grieve, Director of Partnerships and Services at Compassion in Dying said:

“Conversations in healthcare often focus, quite rightly, on the struggle to access treatment. Yet many people nearing the end of their lives often tell us a totally different story; a story of unnecessary treatment, unwanted ambulance rides, and hospitalisations they were desperate to avoid.

“Too often, the people we support tell us that their healthcare team is uncomfortable making the shift from active treatment to comfort care during a person’s final weeks and days. This leads to people receiving active and often invasive treatments they don’t want, rather than being supported to make an informed decision about it themselves.

“It’s right that we need to normalise conversations about end-of-life wishes, but talking alone isn’t enough. Everyone should have the opportunity to think about and, crucially, record what’s right for them at the end of life, and their decisions should be respected.

“If we want to build a safe and compassionate healthcare service that meets people’s needs and creates value for people at the end of their lives, we need to listen much harder to what people say they do not want, as well as what they do.”

Among the report’s practical recommendations, Compassion in Dying is calling for an advance care planning conversation guarantee, where discussions about end-of-life wishes are introduced at NHS health check appointments at certain ages and revisited over time.

Other recommendations include a national public health campaign on advance care planning, and more opportunities to record people’s wishes, including through the NHS App.

Rethinking the UK’s approach to dying – Lessons from an end of life helpline.

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For further information and interview requests, please contact Will Harris at Boardwalk Communications on 07976 622965, or email will@the-boardwalk.co.uk.

Notes to Editor:

All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 2,093 adults. Fieldwork was undertaken between 1st – 3rd March 2024. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).

Compassion in Dying is a national charity that supports people to make informed choices, start honest conversations about death and dying with loved ones, and record and revisit their wishes whenever they want to. We want people to be in control of their end-of-life decisions because there is no-one better to make them.