Writer: Samuel Durston
Editor: Ayotenu Dosumu
All of us know someone who has died. A relative, perhaps a grandparent or uncle, a neighbour, a former teacher. In response to death, survivors grieve, attend funerals and seek solace with family or friends. Grieving is healthy. Yet, we are also expected to move on – to grieve quietly, and then to look away. Our stance towards death reflects a deeper human unease with our own mortality. Imagine, then, being diagnosed with a terminal illness, knowing not only that you will die, but that suffering may precede it.
Palliative care is a branch of medicine focused on making this process as honourable and painless as possible. It is one of the few forms of medicine that prioritises relief over cure. It is also one of the most underfunded medical fields. In 2022, palliative care research received £10.9 million, representing just 0.26% of the total £4.2 billion in UK health research funding, according to BMP Support Palliative Care. It is estimated that up to 90% of people dying in England would benefit from palliative care, yet less than half receive it.
Dr Libby Sallnow, Associate Professor of Palliative and End-of-Life Care at UCL and Director of the Marie Curie Palliative Care Research Institute, conducts research into the various challenges and inequalities associated with providing palliative care. For instance, she highlights that access is particularly limited among disadvantaged groups, including older individuals, individuals with non-malignant conditions such as heart failure, women and those living in rural areas. As the population ages, demand for palliative care continues to rise. This article draws on her insights to explore these issues further.
In 2024, new legislation was introduced into Parliament that could fundamentally reshape end-of-life care. The bill, titled the ‘Terminally Ill Adults (End of Life) Bill’, allows terminally ill adults to self-administer life-ending medication, provided strict safeguards are met. These safeguards include a prognosis of six months or less, full mental capacity, assessments by two independent doctors that the patient meets the eligibility criteria and oversight by a specially constituted panel. Notably, the bill does not legalise euthanasia, but limits assisted dying to patient self-administration. Introduced by Labour MP Kim Leadbeater, the bill narrowly passed the House of Commons in November 2024, but now faces significant opposition in the House of Lords.
Throughout these debates, palliative care has been repeatedly invoked. Yet the implications for palliative care research are rarely examined. If passed, the bill would not only alter clinical practice, but reshape the priorities of those working in palliative and end-of-life care.
Dr Sallnow explains that a main concern among palliative care clinicians is the ethical burden that comes with classifying someone as eligible for assisted dying. Specifically, a major issue is prognostication: a ‘six-month’ prognosis is unreliable. Doctors are, in Dr. Sallnow’s words, “wrong more often than right”. Such uncertainty raises questions regarding eligibility and fairness.
Imagine, for instance, being diagnosed with a terminal illness and given two years to live, only to suffer a complication related to the condition and pass away six months later. In this scenario, you would have been ineligible for assisted dying, despite having a terminal illness, and therefore unable to die on your own terms.
Beyond this prognosis, statements like “unbearable suffering” and “mental capacity”, which appear throughout the bill and are used to determine eligibility, are difficult to assess. These challenges reflect the complexities of measuring suffering, which can be physical, emotional, social or spiritual in nature and can be difficult to quantify using traditional biomedical research methods. Palliative care research, as Dr. Sallnow notes, can help clarify, but cannot provide conclusive answers to individual cases.
Dr. Sallnow notes there is precedent for similar policies across other western countries, such as Canada, the Netherlands, Belgium and some US states. Assisted dying and euthanasia policies in these countries offer valuable insight into how assisted dying would work practically, who typically receives access, what safeguards should be present and unintended consequences may occur. We can learn how a palliative care clinician deals with the difficult decision to classify someone as eligible for assisted dying, and adapt other countries’ legislative pitfalls to improve UK implementation. However, we cannot fully predict, without local implementation, how this translates to the UK’s NHS, legal and social context. Dr. Sallnow stresses the importance of thorough transitional and implementational research if the bill passes.
Regardless of whether the Assisted Dying Bill is passed, the debate surrounding it has brought death and dying back into public conversation. Death is universal, but in this context, has been marginalised and medicalised. As Dr. Sallnow states, the debate surrounding assisted dying has become poorly curated and highly polarised, framed through fear and misleading narratives. She advocates for widespread participatory research and citizens’ assemblies while introducing assisted dying to the UK. This would encourage informed deliberation rather than headline-driven debate, smoothing the implementation of the bill, were it to be passed.
The Assisted Dying Bill represents a significant step towards ensuring all British citizens have greater autonomy at the end of life. Dr. Sallnow’s research focuses on ensuring palliative care is available to all, and advocates for re-humanising healthcare. The Assisted Dying Bill could serve as a cornerstone of this broader goal. While polarising, the Bill has brought death and dying to the forefront of public conversation, and encourages broader thought on how to give each person an “honourable death” – one that aligns with their wishes, values and dignity.
A special thanks to Dr. Libby Sallnow for her participation and collaboration in this article.
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