The UK Assisted Dying Debate: Some Reflections on the Discourse

On 29^th November 2024 the U.K.’s House of Commons voted in favour (330 to 275) of giving Labour MP Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill a second reading in the UK parliamentary process. This was a momentous moment in the history of the right-to-die movement which I have been researching for nearly 20 years.

What this vote meant in practice was that a majority of MPs were in favour of the proposed bill moving to the committee stage and being subject to further scrutiny and deliberations. Over the first few weeks of 2025, the public scrutiny committee took written and oral submissions from experts and stakeholders and I had my own moment in the spotlight appearing as a witness on the 30^th Jan. During this process, there was much debate about how the legislation would function in practice and there was also heated debate speculating on some of the intended and unintended consequences of the proposed legislation.

As Members of the House of Commons prepare to vote again on the revised bill (13^th June 2025 or potentially later date), and as we in Scotland contemplate our own politicians’ decision last week (13^th May 2025) to move the Scottish assisted dying bill a stage further in our legislative process, I want to pause and use this blog to take stock of some noteworthy aspects of the current discourse.

In this ‘long read’, I share my analysis of the bill’s first reading in the House of Commons in November 2024 to reveal aspects of how dying is being publicly framed.

Much has changed in the way we die since the very first UK parliamentary debate on assisted dying back in 1936 when The Voluntary Euthanasia (Legislation) Bill was introduced to the House of Lords (defeated 35 votes to 14). Much has also changed in the way that we conduct our public debates with the advent of social media. I noticed that this time round the debate was more acrimonious and more heated that ever before. New lines of argument (e.g. coercive control) have also emerged in this latest iteration, along with new flash points.

As the media coverage of the issue has increased over the last year, I have wondered aloud – and indeed asked the question publicly on the BBC’s Media Show – why it is that the media prioritises ‘op-eds’ rather than factual coverage of how assisted dying laws function in places with similar legislation to that proposed in the UK i.e. self-administration of a lethal dose in cases of terminal illness only.

Admittedly, some of the evidence from jurisdictions which have legalised is rather patchy. In some cases, this is despite it being legal there for some time e.g. Switzerland -which was the first country in the world to permit self-administered assisted dying back in 1942. But there is still a significant volume of research data – collected by both governments and independent research teams – about what happens after an assisted dying law is passed. The 11 US states, the majority of the Australian states and New Zealand, have all legalized forms of assisted dying similar to that proposed in Scotland, and in England and Wales (self-administration in cases of terminal illness).

Last week (9^th May 2025) the Nuffield Trust published a much needed and painstakingly researched ‘long read’ on how legislation has been implemented in 15 jurisdictions. I sit on the advisory committee for this research and through it I have learnt a lot about what the international picture tells us. Bringing all of the available evidence into one place offers critical learning and:

“highlights the vast variation in how assisted dying has been implemented, reflecting each country’s unique ethical, political and legal landscape” (Reed et al. 2025).

Despite this volume of evidence about what happens after legalisation, there has been a reluctance by both proponents and opponents to engage with it in any detailed or robust way. For example, proponents play down the considerable implementation challenges and the effects on the palliative care workforce, while opponents direct attention to ‘edge cases’ in jurisdictions like Canada which have very different eligibility criteria (non-terminal, doctor administered).

Beyond a reluctance to look at the detailed evidence from other jurisdictions, I also noticed particular framings of death and dying in the debate which are worth exploring for what they reveal about political and public understanding of what dying is like in 21^stC Britain.

Below, I identify some of these framings for what they reveal about how misconceptions of assisted dying intersect with broader misconceptions of what dying is like in the UK in 2025.

4 Framings

1. “…any one of us or our loved ones could be unfortunate enough or unlucky enough to receive a terminal diagnosis” (Kim Leadbeater MP)

This comment, made by Kim Leadbeater the bill’s proposer, felt like a strange place to start the debate. It appears to belie the central fact of human existence – that all humans die. By framing dying as an ‘unlucky’ event feeds into a general denial of dying in public discourse. It gives the impression at the outset that some of us can escape death if we are ‘lucky’ or if we do all the right things.

Not only this, but the research evidence is clear that to ‘receive a terminal diagnosis’ actually improves your chances of dying well. To be told in a clear way that you are nearing the end of your life means you can engage in conversations about what you can expect, adjust your priorities, and engage in a formalized planning process – what’s called advance care planning. This is meant to enable person-centred end-of-life care and is the mainstay of the palliative care toolkit. As the Royal College of Physicians’ Talking About Dying summarises, advance care planning:

“can improve the patient’s quality of life and mood, reduce aggressive care at the end of life, reduce emergency hospital admissions and even extend life expectancy of certain groups.”

In fact, it is the people who are NOT given a clear terminal diagnosis who will not have an opportunity to plan and who are more likely to die in a way which is not in accordance with their wishes, for example, by receiving unwanted treatments which increase distress and time spent in hospital. The reason a person might not be given an unambiguous ‘terminal diagnosis’ might be a result of falling between medical specialties (each specialist leaving it to the other to discuss) or a hesitation by doctors about initiating end-of-life conversations or reluctance/inability to use direct and plain language when doing so. As Ranjana Srivastava writes in her book Dying to Talk:

“Learning to confront one’s own sense of failure, fear or embarrassment is difficult, even for highly trained professional doctors, whose teaching has been imbued with the message that good medicine means curing patients, not acknowledging its limitations.”

All in all, the evidence is clear that people who are told they have a terminal diagnosis will have a better end-of-life experience.

In all senses then, Leadbeater’s statement here is rather perplexing. It also unfortunately feeds into a widespread denial of dying and an anxiety amongst doctors about giving people a clear prognosis and discussing their end-of-life wishes. This denial of dying is what the international death awareness movement, as well as clinical educators and regulators, have been working to counteract for many decades. Alongside palliative care, the assisted dying movement has formed part of the death awareness movement attempting to make death a normalised topic of conversation. It is rather ironic, therefore, that Leadbeater, who is currently spearheading the assisted dying movement in England and Wales, made such a statement.

2. “What reassurances can my hon. friend give that an elderly person in a care home who has been given six months to live would not think to themselves, “I’m a burden.” (Richard Burgon MP)

Comments such as these reflect a lack of public (and political?) understanding of what dying in care homes is like in the UK in the 21^st Century.

The Alzheimer’s Society estimates that approximately 70% of people living in care homes have dementia or severe cognitive impairments. These people will not be told of their prognosis. They would also not fulfil the requirements of the proposed assisted dying legislation – that the person applying needs to have mental capacity.

Care home residents not currently diagnosed with dementia are likely to develop it in the future and then to die with it. All-in-all there are statistically very few people living and dying in care homes in the UK who will be told by a clinician that they “have six months left to live”, and who would therefore be eligible for assisted dying as proposed.

This same misunderstanding about the ‘frail elderly’ accessing (or being coerced into accessing) assisted dying legislation was repeated in the debate a number of times, for example:

“The voices of those we cannot hear: the frail, the elderly and the disabled” (Danny Kruger MP)

Frail older people, as I said earlier, are 1) very likely to have dementia or cognitive decline and therefore will not fulfil the mental capacity requirement of the proposed bill and 2) are highly unlikely to be told that they have a time limited prognosis and therefore would not know that they were even in a position to request it.

The evidence is clear that the vast majority of people who request assisted dying are not frail elderly people in care homes, often characterized by opponents in the debate as being ‘voiceless’. Rather, they are people predominantly dying of cancer and, less commonly, neurological conditions who are in the ‘third age’ of life (rather than the fourth age) and who are also in receipt of palliative care.

Those requesting assisted dying are motivated by a desire to leave this world in control and maintain their independence to the last. A request for assisted dying is rarely an impulsive reaction to end-of-life suffering but rather made by people may have thought about this option for some time, and in many cases the idea was embedded in their philosophy of life. They have also been shown to need considerable cultural health capital to navigate the process. The evidence shows that these people are highly unlikely to be “shy” or to have “low self-esteem” as characterised in the House of Commons debate by Robert Jenrick, MP.

It is critical that we understand the profile of the people who access assisted dying legislation in jurisdictions where it is lawful. Only then can we understand that is not a phenomenon that incorporates the ‘voiceless’ frail elderly in its scope.

3. “The Bill undermines the foundation on which our NHS is built – to preserve and protect life.” (Carla Lockhart MP)

This was the comment which revealed perhaps the biggest and most damaging misconception of all – the myth of medical rescue.

Caring for the dying is unequivocally a very significant part of what the NHS does. This comment reveals that this important work is not just undervalued but the scale of the work is not recognised.

Our ‘imminence of death’ study from 2014 revealed that almost 1 in 3 patients in hospital will die within a year, rising to nearly 1 in 2 for the oldest groups (those over 85 years old). We need more public and political awareness of what is happening inside hospitals up and down the country and a recognition that caring for the dying is a large part of what hospitals do and therefore what healthcare professionals do.

The idea that the NHS is about ‘preserving life’ at all costs is a narrative aligned to the rescue culture of modern medicine. This view leads very quickly to denial of dying and, more damagingly, to overtreatment and inappropriate treatment at the end of life as we try to ‘preserve’ it. This narrative is not aligned to the philosophy of palliative and end of life care which has worked hard over several decades to shift the focus from harmful overtreatment at the end of life to maximising quality of life.

4. “Society has chosen a dystopian and contagious path if it chooses to facilitate the death of those who have a terminal illness rather than standing with them, weeping with them, valuing them and loving them against the desolation that any of us would feel if we were given a diagnosis of that sort.” (Tim Farron, MP)

The final misrepresentation of dying that I want to discuss is the idea that sufficient love, empathy and care can prevent feelings of ‘desolation’ at the end of life.

As discussed earlier in (1), the evidence is clear that being given a clear diagnosis and prognosis is likely to lead to better decision-making and to overall higher quality of life. There is also evidence that when doctors are honest about poor prognosis it can benefit a patient’s psychosocial state and actually lower levels of depression and anxiety. In other words, the link between receiving a terminal diagnosis and feelings of ‘desolation’ or, in the words of Danny Kruger MP, ‘despair’ is not born out in the evidence.

The idea that with sufficient love and care people will not experience ‘desolation’ could also be read as putting the blame on caregivers for people’s requests for assisted dying. This perpetuates the idea that the motivation for assisted death is a lack of love and care. The evidence from jurisdictions which have legalised assisted dying show no evidence of this. Professional carers and friends and relatives can feel very conflicted about a person’s decision to choose an assisted death. The emotions experienced have been characterised as ambivalent or ‘double-edged’ – wanting on the one hand to support their patient’s/relative’s autonomy and see their suffering relieved, while on the other feeling a moral quandary about the method or about losing time with their relative.  

The idea that a lack of love or lack of support motivates assisted dying requests also ignores the fact that if you live alone or lack family support then you are less likely to be able to navigate complex assisted dying laws or to find a doctor willing to go through the process. As Mara Buchbinder writes in her book on assisted dying in the USA:

“the caregiver is a stage manager who performs essential bureaucratic and emotional labor, and on whom the person pursuing aid-in-dying is critically dependent.”

It also needs to be recognised that talk of ‘despair’ and ‘desolation’ has strong Christian undertones, indicating a sense of turning one’s back on God’s love. Ultimately, this framing draws a moral parallel between assisted dying and suicide. This is a complex ethical debate and there is a significant body of literature exploring it – which I don’t have space to go into here.

However, a more social scientific point to highlight is that medicalised assisted dying has become a new category of thought in societies which have legalised. It is socially understood neither as suicide, nor as a natural death. It occupies a third – and very new – category. In countries and states which have recently legalised, we can observe a process of initiating this new/third category into their public discourse and moral landscape.