This is Prospect’s rolling coverage of the assisted dying debate. This page will be updated with the latest from our correspondent, Mark Mardell. Read the rest of our coverage here
27th March
Claire Goodman is a professor of health and care research at the University of Hertfordshire who, for the last 20 years, has been leading research that looks at older people, mainly living either in their own homes or in care homes, and living and dying in either of those places.
Currently she is focusing on studying people with dementia at the end of life, and how healthcare, and people receiving care, work together to change some of the very well-documented problems they face.
She is another expert I met at the Nuffield Trust Summit who is ideally place to address our overriding question in this blog.
MM: Given that most people say they would prefer to die at home, many more people actually die in hospital. I guess a lot of people die in care homes as well. What constitutes a good death?
CG: That’s a good question, and there’s a lot of research around it. It depends on whether you’re asking those observing dying—family carers and professionals—or if you’re asking the people anticipating their own death. There’s a difference between observed evidence and personal narratives, some of which can be slightly magical. It’s a very polarised subject, as I’m sure you know. I’ve long wanted to do a study on what I call magical stories—there are a lot of them in this space.
MM: Magical stories?
CG: Oh, yes. Stories of a moment of lucidity just before the person dies, where everyone feels there is a kind of closure. I think, first and foremost, a good death should be pain free. That should be the priority. Then, there’s the question of location—where can someone be most comfortable? A good death also involves people understanding what is happening, so family members feel supported.
MM: I don’t know if you’ve seen Kathryn Mannix’s work. She’s done a really good video explaining what dying looks like, what is normal, how breathing changes and the stages of active dying. It’s very helpful.
CG: But defining a good death also depends on the cause of death. The panel you were part of [at the Nuffield Trust Summit], for example, relied heavily on cancer statistics. When someone has cancer, they often know there are no further treatment options, which gives them the opportunity to prepare, to think through what they want. But most older people don’t get that kind of gift—the privilege of time to prepare and make clear decisions.
This ties into the assisted dying debate. Many older people live with multiple long-term conditions—heart failure, diabetes, dementia—which create a different kind of trajectory, one marked by uncertainty. For instance, care homes often call families and say, “I think you need to come now,” only for the person to be sitting up the next morning, eating a full cooked breakfast and enjoying their food. It’s not uncommon.
A lack of certainty is a huge factor in end-of-life care. And a good death, for me, is about having strategies that help people hold that uncertainty—accepting that it will be uncertain and planning for that. A lot of active palliative care is about removing uncertainty: “You will have symptoms, but we have medication to manage them.” That’s fine, but sometimes symptoms aren’t easy to manage. So how do you hold that uncertainty? Is this a temporary crisis the person will recover from, or is this truly the end? And whose wishes are we following?
This is particularly difficult in care homes. The staff often know the person well, but families, who are deeply invested, may have different views. There’s a real conflict.
MM: For example, say an older person in a care home has repeated chest infections. They’ve been given antibiotics multiple times. The staff might look at the situation and think, “Is this still the best course of action?” But the family may push back: “You gave antibiotics last time—why not now? Are you giving up?”
CG: Care home staff are acutely aware that they are highly visible and under scrutiny. They need someone to reassure them, to say, “It’s okay, we can support this person here.” Then you have the visiting GPs, who might look at a person’s medication list and say, “We should stop these non-essential medications.” But some GPs are reluctant to stop something like statins because of strict guidelines. They worry—what if this person lives another six months and I’ve failed to meet clinical standards? It sounds ridiculous, but that’s the kind of uncertainty that shapes decision-making.
MM: This ties into the assisted dying debate, but before we go there—I just want to revisit the idea of magical thinking and terminal lucidity. I would never have believed it myself, but my mum had a moment of lucidity when she was otherwise unresponsive. She suddenly spoke clearly, after being locked in silence for so long.
CG: Oh, I agree—this absolutely happens, and it’s wonderful. But you can’t promise it. And for every person who experiences that moment, there are many who don’t. What interests me is not debunking these stories, but understanding what they reveal about our ideas of a good death. People tell these stories for a reason—they communicate something important.
I worked with a care home where a woman loved trees. Trees were central to her life. She would always want to sit outside near them. When she was dying, the staff brought shrubs and trees into her room. Then, when the weather was good enough, they wheeled her bed outside, and she died next to her favourite tree. It was a beautiful story—one that the care home shared with new staff as an example of how they honour residents.
But the reality is, that kind of experience is rare. If it had been raining, they wouldn’t have taken her outside. If someone had complained, it could have been misinterpreted as neglect. These narratives communicate a culture of care, but they can’t be standardised.
MM: The same applies to assisted dying. It’s not just about suffering—it’s about control. People who support assisted dying often prioritise agency over everything else. That’s a very western idea—individual autonomy. Other cultures don’t necessarily see death that way.
CG: Yes, but I think we need to be honest about how our society has changed. I predicted 15 years ago that assisted dying would be introduced, not because of personal choice, but because of cost pressures and lack of resources.
The last year of life is the most expensive for the NHS. Most people don’t require much medical care until those final years. If assisted dying becomes an option, will it be driven by personal choice or by systemic pressures? The hospice movement has also boxed itself into a corner. It originally refused NHS funding to maintain independence, but now it relies on charity fundraising. That’s not sustainable. [Hospices rely on charitable funding for some two-thirds of their income, according to Hospice UK]
As for palliative care, we know it can be integrated into general care. We know how to do it. But we have no levers to ensure it happens. Instead, care homes remain both a solution and a problem for the NHS—offloading long-term care but lacking NHS status and resources.
MM: If assisted dying becomes a response to the absence of care, that’s deeply concerning. If you were an MP, would you vote for it?
CG: I would be reluctant, because of the absence of care and death literacy. The current debate is shockingly thin—it’s deeply polarised, rather than engaging with the complexities.
We did a study tracking care home residents over a year. Their views on dying barely changed. Most didn’t want to die, even after witnessing others pass away. The only people with firm opinions were those with clinical backgrounds.
That tells us something. People adapt. As the lens of possibility narrows, they expand to meet it. The assisted dying debate isn’t grappling with that reality.
MM: How has studying this changed your own views on dying?
CG: It’s made me more aware of the sheer variability of dying. Most people don’t go suddenly—they decline gradually. And when people feel safe, valued and have purpose, they don’t seek control through assisted dying.
That’s the conversation we should be having.
26th March
It had been a very long night, or to look at it another way the new day was just half an hour old when the committee chair, Roger Gale, called the final division:
“I’m strictly out of order.
Can I add my thanks—first of all to the staff of the House: the officers, Hansard writers, and the clerks, without whom our job as chairmen, and your job as committee members, would frankly be impossible.
And can I thank all of you for what I understand from colleagues—and certainly from my personal experience—has been an extremely courteous discussion of a very, very difficult bill. I congratulate you all, on whichever side of the fence you are, for the way that this has been conducted. Most grateful.
The question is, do I report the bill, as amended, to the House? As many as are of that opinion, say ‘aye’.
To the contrary?”
Silence, as all MPs had voted for the bill to move on to report stage. There was a ripple of applause as the committee came to an end. And that was that after 29 sessions, looking at 600 amendments, and adopting changes including more than 30 amendments from those who had opposed the bill when it was last voted on in November.
But one of the final amendments from Kim Leadbeater herself appears to many to have thrown a huge spanner in the works. By extending the deadline for introducing the bill to four years’ time, rather than the original two, she has pushed it into 2029—which is an election year.
And many think it could be very difficult for a government to go into an election having just delivered such controversial change. But it is equally hard to go into an election with such a huge controversial move hanging in the balance. Hence headlines in the Telegraph and Guardian alike, agreeing the bill’s future had been “thrown into doubt”.
The Guardian goes on to quote two unnamed pro-bill MPs: “I fear it risks politicising it massively—if it has been through parliament and got support of the public then potentially making it an election issue is not desirable at all. It might have been easier just to not have a deadline at all.” And another “supportive MP” said they “can’t see Whitehall seeing this as anything other than a chance to delay it indefinitely”.
Campaign groups are worried too. Humanists UK chief executive Andrew Copson commented: “We regret the decision to change the implementation deadline from two years to four.
“Many other countries already have safe assisted dying laws and none of them has taken more than 19 months to implement them, apart from one that was subject to a court challenge. So it really shouldn’t have to take four years for the one here. If it does, people who need this change in law will continue to die in ways not of their choosing.”
He then listed how long it has taken from the day the law was passed to the first legal death: varying from 35 months in Oregon in 1994, to the next longest—the Australian states of Victoria and Western Australia—at 18 months, down to American states such as Colorado and Washington, DC, where it took just a month.
So why on earth was this longer period introduced in the first place? Leadbeater’s team insists it’s needed because of the complex additions to the bill—like the Voluntary Assisted Dying Commission and multidisciplinary panels—which means it’ll take longer to set up. Although they say Leadbeater is acutely conscious that, for some people, there’s a fear it may be too late for them personally, she argues it’s better to get it right than to rush it.
Her office say Leadbeater hopes the system will be up and running sooner than that, adding that there will be six-month progress reports from the secretary of state to ensure there’s no unnecessary foot-dragging in its implementation.
Speaking on Radio Four’s Today programme, Marie Tidball, a pro-bill member of the committee, promised to keep an eye on the timetable: “I think there is a motivation by those of us who have worked so hard to scrutinise this bill to ensure that this is done as expeditiously as possible, and as safely as possible, and that is the right balance to take. As I said, this four-year window is a legal backstop, not a target, and I know many of us will be working to ensure that it is achieved within that timescale.”
We will see how this develops when the bill returns to the commons, almost certainly on 25th April. But there must at least be an argument that the government might want to get a move on to avoid the first assisted death happening in an election year.
6.30pm
After a hiatus to vote in the Commons a rather breathless Kim Leadbeater arrived back in the committee to explain why assisted dying had to be a core NHS function, but why also private companies would not be banned. It is worth quoting at length.
“The injustices of the status quo will remain, with too many people travelling abroad to seek assisted death, or taking matters into their own hands here at home, alone and often before they need to, in order to protect their loved ones from the threat of prosecution.
“Those people will be left as they are now, with no protections against coercion or pressure to end their lives, and crucially, no ability to choose the manner and timing of their deaths—so they can say goodbye and be remembered by their loved ones as they would wish to be.
“Clearly, some honourable members do not want them to have that choice, and they are absolutely fully entitled to that view. However, if parliament decides otherwise and gives them that choice, it's our responsibility to ensure that it's a choice that can be exercised without adding so many constraints and impediments that would only serve to make their last days and weeks more traumatic, not less.
“That is one reason—although not the only reason—why I am clear the process must be available as part of the range of services available to patients under the NHS and free at the point of need. It must be for the secretary of state to make provision for the service in England, and for ministers in Wales to do the same, if the Senedd agrees. The House of Commons must have the opportunity to scrutinise the regulations under the affirmative procedure.
“Despite the challenges, the NHS is a trusted institution staffed by some of the best qualified and skilled health professionals anywhere in the world. Not all of them will want to participate, and that is their absolute right. But patients and the wider public should be reassured that assisted dying services would be commissioned and regulated in the same way as other services through the NHS—a system they are familiar with.
“There’s another very important reason why I do not believe voluntary assisted dying should be a service separated from the core responsibilities of the NHS. The Honourable Member for East Wiltshire and others described the decision to request an assisted death as a fork in the road. ButI fundamentally disagree. A fork in the road implies that once you decide which route you are going to take, that’s it, and you’ve chosen the direction of travel. That goes completely against the principles behind this bill. The option of an assisted death is just that: it’s an option, throughout. Right up until the final, final moment, the person can decide not to exercise that choice.
“Experience from around the world suggests that consistently 30 to 40 per cent of people don’t. But knowing they have the option gives them comfort and reassurance to make their final days less painful. I believe it’s crucial that the option of a voluntary assisted death remains part of a holistic approach to end-of-life care.
“If other options—including palliative care or the comfort provided by a hospice or other institutions—are working for the individual, they have no need to take it up. But if it remains their clear, settled and informed wish to do so, then that is their decision.
“My belief that a person requesting an assisted death should be guided through the process in a health and care environment that they are familiar with and trust extends to private provision. Other commissioned and regulated services are supplied by a range of providers, and the same should apply here, as my Honourable Friend and the Member for Sunderland Central to this has said. NHS Trusts and ICBs may, as they already do, use private providers in some circumstances. This provides flexibility, which is important…
“The amendments to these clauses seek to frustrate or delay that intention, and I cannot support them.
“As a committee, perhaps we are at a fork in the road. One route leads towards the correction of an injustice that has already lasted too long and offers a safe and compassionate choice at the end of life.
“The other route says, ‘We’re okay leaving things as they are, that the status quo is defensible, and people do not deserve to be given that choice.
“I believe they do.”
12.30pm
The Isle of Man will become the first state in the British Isles to legalise assisted dying. Members of its Legislative Council agreed final amendments to the island’s assisted dying bill today. The bill will now be sent for royal assent, and assisted dying could be available for terminally ill residents from 2027.
12pm
A lot of debate this morning has been about what is known in parliamentary jargon as Henry VIII powers—a reference to that old monster’s predilection for issuing proclamations that avoided parliamentary scrutiny. Nowadays it means the power of a minister to unilaterally “amend or repeal provisions in an Act of Parliament using secondary legislation, which is subject to varying degrees of parliamentary scrutiny.”
In this case it means that what many regard as fundamental decisions aren’t set out in the bill, but left up to the secretary of state to decide at a later date. One such decision is whether assisted dying should be exclusively provided by the NHS or whether private companies should be allowed, and if so how much profit they can make.
The Liberal Democrat MP Sarah Olney, who voted against the bill, worried that this might encourage doctors to recommend death over life. “There is a very grave risk that the most ethical person, if offered money to carry out an action that they are inclined to carry out anyway, that is part of their professional practice—there is a risk that those incentives drive behaviour that that leads to worse outcomes for patients, specifically in relation to assisted dying.”
25th March
11am
The bill’s main opponent, Danny Kruger, has opened the debate on the last day of the committee. He argues if the bill is adopted it will undermine the whole purpose of the NHS.
“I do put it to the committee that it’s a hard thing to do—to take a red pen to Bevan’s legacy, to fundamentally change the NHS, designed to secure improvement in the physical and mental health of the people of England and Wales, dedicated to prevention, diagnosis, achieving wellness—and to include, to add into that founding clause of the NHS, the words “and to end the lives of terminally ill people.”
“So I’ll be blunter than the drafters have been. This clause changes the NHS from the National Health Service to the National Health and Assisted Suicide Service. That is the direct implication of the clause that we are debating.
“Furthermore, it does so in the same clause that is designed not only to fundamentally alter the National Health Service, but also to enable the private sector to be paid from NHS funds to end the lives of terminally ill people. And not only that, but to do so with the Henry VIII power—so broad as to enable any changes within the NHS, or any law, to facilitate this goal.”
24th March
Kim Leadbeater is hoping the committee stage of her bill will be done and dusted by the end of Tuesday, ahead of the chancellor’s big financial statement on Wednesday—which most MPs will want to be in the chamber for.
There’s a lot to get through before the clock ticks into Wednesday. First up is a debate on Marie Tidball’s amendment, designed to copper-bottom safeguards for disabled people.
The fears of disability campaigners are a central plank of opposition to the bill, so Tidball’s intervention is a big deal. She is herself disabled and was once named one of the UK’s leading disability campaigners. Her proposed new clause would require an annual report on how the act is affecting disabled people.
Alongside other amendments, she said: “So often, control is taken away from disabled people in all sorts of circumstances. I passionately believe in inclusive healthcare for disabled people… and ensuring they have a strong voice in advocating for themselves on that healthcare. My amendments seek to ensure that disabled people who are terminally ill and want this choice can access it safely if they are found to be eligible, and that those who are not eligible or do not want this option are robustly protected and supported to make end-of-life decisions that are right for them.
“My proposed changes to strengthen it further will introduce much-needed regulation, transparency and specialist advocacy support, better protecting a number of groups, including those with learning disabilities, mental health disorders and autism, regardless of what they might ultimately choose.”
But that won’t silence the concerns of many disabled groups who’ve been campaigning against the bill. A new letter from Miro Griffiths—campaigner and disability scholar at Leeds University—alongside other experts in disability, law and medicine, warns of serious risks.
“In our view, Kim Leadbeater’s Bill is beset by issues that would translate into serious public harm, should it be passed into law. We would urge you to reflect on the issues above and vote down the Bill at Third Reading.”
That third reading is expected in mid-May, after the report stage—likely to land on 25th April.
