David Oliver , 2025-05-16 12:01:00
- David Oliver, consultant in geriatrics and acute general medicine
- davidoliver372{at}googlemail.com
Follow David on X @mancunianmedic
The Terminally Ill Adults (End of Life) Bill,1 which aims to legalise medically assisted dying in England and Wales, has brought greater public and political attention to palliative and end-of-life care. There’s a groundswell of support to ensure that more people nearing end stage illness and death receive skilled, compassionate care and more consistently experience a good death, for them and their loved ones.
The public conversation and reports on current experiences of people who are dying often focus on professionals over-medicalising the end of life, over-treating, being too reluctant to move towards palliative approaches, and failing to provide adequate symptom relief, dignity, or personal care.23 We see this in the narratives of those who support legalising assisted dying—graphically describing distressing experiences for a patient’s family and friends, even when receiving formal palliative care. There’s also major variation around the country and between different populations in access to specialist palliative care or more general high quality care at the end of life, as highlighted in national audits4 and last week’s volume 1 report from the Palliative and End of Life Care Commission.5
There’s good professional consensus in the UK about recognised best practice in end-of-life care in numerous guidelines and documents—for instance, from NHS England,6 the National Institute for Health and Care Excellence,7 the British Geriatrics Society,8 the Leadership Alliance for the Care of Dying People,9 and most recently the commission’s report.5
This consensus is that we should discuss death and dying openly with patients, their families, and the public; recognise when people are nearing the end stage of their life or illness; and help people to make advance care plans over their priorities, preferred treatment, or its limits—along with their place of care, including escalation plans for emergency care and treatment. We should not prolong natural death with burdensome, distressing, or futile interventions that the dying person might not want, and we should aim to palliate distressing physical and psychological symptoms and give people the option to die not in hospital but at home or in another setting such as a hospice.
I’ve increasingly run into problems in my clinical work in acute adult care, where we as professionals want to do these very things and are met with determined opposition from patients and their close relatives. Further exploration often reveals misunderstandings about what we mean by palliative care, withdrawal, non-commencement of treatment, or urgent escalation plans. I’ve spoken to many colleagues who also experience this as a growing barrier to optimal care for the dying person.
Patient perception
There are some data to back up these anecdotal experiences. A 2024 survey of 2164 UK adults,10 commissioned by palliative medicine researchers at King’s College and conducted by YouGov, showed that 17% of white people and 30% of people from ethnic minority groups in England didn’t trust healthcare professionals to provide high quality palliative care towards the end of life. It found that 22% of people from ethnic minority groups hadn’t heard of palliative care (compared with 4% of white people) and that 18% in ethnic minority groups believed it was accurate to say that palliative care involved giving people medicines to shorten their lives (compared with 5% of white people).
Focus group research into “do not attempt CPR” (DNACPR) discussions and decisions, carried out by Compassion in Dying and commissioned by the parliamentary and health service ombudsman,11 found that people over 70 or their families who had had bad experiences cited problems with communication of the decision to the patient and family; the timing of discussions—often in acute crisis, as there had been none earlier; and the way discussions were held or decisions communicated, which was sometimes perceived as uncaring. Participants also reported a lack of understanding about why a discussion was being held at all and what had triggered it—including suspicions of ageism and a lack of trust, if they believed that DNACPR orders had been ignored or made covertly.
A 2021 Care Quality Commission report on DNACPR decision making early in the covid pandemic12 also highlighted some clear failings in applying the process, the documentation and involvement of patients and families, and the justifications for the decision. A 2021 Survation survey of over 1000 people on “dying well”13 showed that only 43% of the public could correctly identify what assisted dying was: 10% thought that it meant “hospice-style” care, and 42% believed that it was the “withdrawal of life prolonging treatment.” There’s also a widespread misconception among the public and some healthcare professionals that “DNACPR” is about denying people any treatment in crisis, whereas it’s only about what happens when your heart stops—often as a result of irreversible underlying conditions.14
So, what can we do to overcome barriers to good end-of-life care when they come from the public rather than professionals? Clearly, much of it relies on better one-to-one conversations between doctors, nurses, and patients—conducted with empathy, as well as adequate time to discuss concerns and help to document care plans and preferences, as recommended in the Royal College of Physicians’ “Talking about dying” resource.15
More broadly, however, I think that we as professionals need to publicise far more accessible, plain language information and responses to frequently asked questions, to help normalise these conversations and tackle misunderstandings and misinformation. We need a better public conversation to help support better deaths and overcome the barriers to achieving them, whether or not there’s a change in the law on assisted dying.
