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
13th December
Professor Sam Ahmedzai has an impressive resume, with 30 years’ experience in palliative care at the highest level, so it is something of a surprise he regards the new commission on the specialism with “despair”. But then, he is a self-confessed bad boy—and, despite his 74 years, there is something boyish about him: a dapper high-flyer who manages to be both profoundly thoughtful and mischievous in equal measure.
As far as I can judge (admittedly on the evidence of a half an hour zoom call) his age only shows in one respect. His longevity and vast experience give him the confidence to lay into sacred cows with brutal gusto. Even when first training as a cancer doctor, he was fascinated by the then relatively new discipline, and for nine years was the first medical director at the newly built Leicestershire Hospice. In 1994, he was appointed to the first chair of Palliative Medicine in the Medical School at the University of Sheffield and stayed there for more than 20 years. Since he retired seven years ago, he seems to have been busier than ever. When he speaks to me, he seems to have taken on yet another role: iconoclast-in-chief—smashing into the sacred tenets of palliative care.
Since the debate on the assisted dying bill, MPs have been falling over themselves to praise palliative care, but Ahmedzai suggests the discipline is far too conservative, stuck in the past. While many MPs regard the hospice movement with something approaching reverent awe, he sees it as a distraction, only a tiny part of end-of-life care. MPs are near universal in their admiration for Rachael Maskell’s plan for a commission, unveiled on Wednesday, but he has a warning:
“My fear is that it will only recommend more of the status quo, rather than fostering the radical changes needed to address the full spectrum of patient needs throughout their journey, not just at the very end.”
He observes the commission contains many people who are against the bill: he is very firmly on the other side of the debate. The involvement of the supposedly neutral hospice movement scarcely reassures him. He thinks the emphasis on them is damaging and the root of his dismay at what the discipline he loves has become.
“The vast majority of palliative care happens at a general or basic level, provided by GPs, district nurses, care home staff, and specialists in specific diseases—like oncologists, neurologists, or cardiologists—who are not palliative care specialists but manage initial palliative needs as part of their work with patients who are dying.
“Then there is specialist palliative care, which is where I come from. I was involved in setting up palliative medicine as a specialty in the 1980s. Specialists in palliative medicine number only around 700 in the UK. Specialist palliative care delivers the highest quality of care and operates in hospices, hospitals, and communities.
The challenge is when people advocate for improving palliative care, their message is not always clear. Are they referring to enhancing care at the general level—for patients in care homes, in their own homes, under their GP? Or are they focused on expanding access to specialist-level care?”
Ahmedzai is scornful of the way the sector has evolved—or rather hasn’t.
“Palliative care as a field has been resistant to change in many respects. For example, despite leading research in drug therapies and other advancements, I’ve encountered significant resistance to innovation. The specialty tends to adopt a conservative ethos, emphasising simplicity and maintaining established practices rather than embracing transformative progress. Unlike fields such as oncology or cardiology, which continually push boundaries with new discoveries, palliative care has been slower to evolve.”
He’s worried that the Maskell Commission’s report will get more money from the government but nothing will emerge but more jobs for specialists.
“My concern is that simply increasing funding for palliative care may result in more of the same focus on the very end of life. Currently, the average time before someone is referred to palliative care in the UK is in the final few weeks before death. By then, most of the suffering and challenges have already occurred, leaving palliative care to address only the final stages.
“I despair that the commission may simply recommend doing more of the same. This approach wouldn’t advance anything; it might cover a few more people but wouldn’t deliver the radical change we need.”
Why does he think the palliative care discipline is conservative?
“When it began in the 1960s, the movement was revolutionary. It broke new ground by taking patients away from oncologists who struggled to manage cancer pain effectively. By addressing pain in a more holistic way, patients found relief, marking a transformative moment in medicine. That initial energy and vision carried into the early days of the hospice movement, which I joined during its second wave in the 1980s. However, that revolutionary spirit has waned; the movement has now become part of the establishment and resists change.
“This conservatism stems partly from a fixed idea of what constitutes a ‘good death’, a concept widely debated in the 1980s. Back then, a good death was envisioned as one free of medical interventions—no drips, tubes, or monitors—surrounded by family. While that might work for some, it does not suit everyone. In hospitals, patients with specific conditions may need interventions like feeding tubes, fluids, or monitors to either address symptoms such as vomiting, or prevent complications like sudden bleeds.
“The lingering attachment to this traditional view has led to questionable practices. I've seen patients transferred to hospices where essential treatments, like intravenous drips, were promptly discontinued, hastening their deaths unnecessarily. Ironically, as a proponent of assisted dying, I’m often accused of wanting to hasten death, yet I’ve consistently fought harder than many colleagues to keep patients alive when appropriate. I’ve used every available resource to sustain life.”
He says the Association of Palliative Medicine and hospices have strong vested interest in the current debate. “Hospices manage only a small fraction of patients and are often selective about admissions. For instance, I’ve discharged patients from hospitals after stabilising their symptoms, only for hospices to reject them because they were ‘not dying enough.’ Hospices frequently admit patients only in extremis, after the most intensive management has already been completed elsewhere.
“It’s important to recognize that hospices represent a very small part of the sector—only around 5 per cent of people die in hospices. The public at large may not realise this, even when donating money to hospices. The question remains: when people talk about increasing palliative care, are they focusing on specialist care or broader, general care, which serves the majority of individuals, such as those in care homes or at home?”
I put it to him that the low percentage of deaths in hospices could be due to a lack of funding and facilities (otherwise simply understood as places and beds).
“While this is a valid point, it’s also rooted in the hospice movement’s deliberate choice to operate outside the NHS from its inception. When St Christopher’s Hospice opened in the 1960s, the movement chose independence from the NHS, partly to retain a religious ethos, as reflected in names like Saint Christopher’s, Saint Joseph’s, and Saint Luke’s. Though this religious aspect has diminished over time, hospices remain largely separate, relying on partial NHS funding.”
For a long time Ahmedzai says he adhered to the standard perspective within the hospice and palliative care community about assisted dying: a focus on quality of life without aiming to either prolong or shorten life, and opposition to euthanasia as practised in countries like the Netherlands and Belgium. Over time, however, he began questioning this position.
In 2012, his views shifted significantly after being invited to join the Falconer Commission, where he was recognised as someone with a nuanced perspective. As part of the commission’s work, he visited Oregon to study the state’s approach to assisted dying. Engaging with both healthcare providers and patients, he observed how assisted dying could coexist with palliative care. This experience convinced him to move away from a neutral stance, and he began publicly supporting assisted dying.
For over a decade, he has been one of the most senior figures in palliative care in the UK advocating for the practice. While still in the minority, he notes a growing number of professionals in the field willing to consider and support assisted dying.
I ask him about the powerful interview we published earlier this week with Dr Natasha Wiggins, who told me “I’ve seen thousands of people die. Actually, the majority of deaths are very ordinary. They are quiet, they are peaceful, they are dignified. I feel really worried, actually, that the way death from a terminal illness was represented in the debate, in the media, in the rhetoric, is that death is a screaming, drowning, horrific act. For most people, it’s not.”
Ahmedzai does not just defend the MPs who made those claims—he reveals he was the source of their stories.
He tells me about a meeting he had with MPs in Westminster. “I shared some horrific stories, as did others, to highlight exceptional but real cases. We’ve never claimed these situations are the norm, but they do occur. The question is: what percentage of such distressing deaths is acceptable? Can we simply ignore these outliers? The individuals experiencing these predictable, terrible deaths might be precisely those who would consider assisted dying. We’re not advocating for it to be a solution for everyone. Most people, given good general or specialist end-of-life care, wouldn’t seek it. But this raises a philosophical question—how much suffering must exist before we acknowledge the need for change?
“One example raised involved uncontrollable vomiting of bowel contents, often blackened and foul-smelling after sitting in the gut for days due to blockages. Whether it's faecal matter or upper gastrointestinal fluid, the result is horrific. I also spoke about carotid blowouts, a rare but known complication, where a tumour in the neck compromises the carotid artery, leading to catastrophic bleeding. ENT surgeons recognise this as a ‘carotid blowout’. I've witnessed such an event, with blood everywhere. In one case, the patient had begged me beforehand, ‘Can you put me to sleep before it happens? I don’t want my wife and children to see this.’ Fortunately, I was present when it occurred and was able to render him unconscious within seconds. But why should he have faced that ordeal at all?
“When I shared this in the House, others nodded—they were familiar with carotid blowouts. These cases are predictable. Even though I’ve only encountered a dozen in my career, imagine unheard numbers—especially in care homes. These stories illustrate why it’s vital to consider the realities of suffering in these debates.”
Wiggins made another point that stood out for me—“I get asked regularly to kill people. Patients ask me all the time: ‘Please, can you kill me? Please, can you end my life? I’m sure you do it secretly, come on.’ The question I always ask is, ‘What would have to change in your life for you to not want to die right now?’ There is always an answer, and I can nearly always improve that thing.”
Ahmedzai is not impressed: “Let’s be honest—nearly all specialists acknowledge the limits of medicine. As a globally recognised expert in cancer pain management who still lectures internationally, I know firsthand that not all cancer-related pain can be controlled. And it’s not just cancer; other conditions also present challenges. Medicine has its boundaries, and palliative medicine is no exception. Why should we pretend otherwise? We can't cure every cancer or prevent every heart attack. Claiming we can manage everything is a fallacy.
“While I cannot provide precise proportions, I have encountered patients whose pain my team and I, despite our best efforts, could not fully alleviate without resorting to palliative sedation. This involves administering just enough sedative medication to induce a low level of unconsciousness, with the patient’s consent, to manage their suffering. However, not everyone is skilled in its proper use. I have witnessed instances where palliative sedation was poorly applied, and the patient promptly passed away within minutes.
Proper palliative sedation should be proportionate to the suffering, and not hasten death. But without adequate training and expertise, these lines can blur, raising significant ethical and practical questions.”
12th December
2pm
As Rachael Maskell launches her commission on palliative care, I am left wondering what is the point?
The terms of reference are clear: “As set out in the Health and Care Act 2022, Palliative and End of Life Care must be universally provided and yet over 100,000 people die each year without receiving vital end of life provision. With the NHS and social care under significant duress, many more receive very limited services... The Commission on Palliative and End of Life Care will seek to identify the current strengths and significant shortfalls in provision and the barriers that exist in the current systems of such care. It will look at the relationship between specialist palliative care services and generalist services, to identify best practice in integration and choices in care.”
The aims are eminently sensible: a good and safe model for palliative and end-of-life care that is both equal across the country and equitable to need. This will require agreed data collection to measure outcomes.
There is much more in this “motherhood and apple pie” vein. Few would wish to disagree with such laudable aims.
Clearly improving any aspect of healthcare is worthwhile, so when I ask, “what’s the point?” I am asking what the politics is behind the unusual step of an MP setting up their own, private commission. The aim to have a report ready by the spring gives us a clue. In fact, two clues. First is to feed into the government’s 10-year plan for the NHS, which will also contain the workforce plan.
Gordon Brown, not only a former prime minister but a former chancellor, is clear that money is critical: “Hospice UK estimates that one in every five hospices are now making cuts or planning them, alongside 300 unused inpatient beds and fewer ‘hospice at home’ visits. This is why a Commission on Palliative and End of Life Care is crucial, ahead of consideration of other interventions, so those facing a terminal illness have their needs properly met.”
So it is, in part, likely to end up as a fairly typical piece of special pleading: more cash for our sector please.
But it is that rather coy “ahead of consideration of other interventions” that is really the key. Although assisted dying isn’t mentioned at all—not in the plans for roundtables or oral evidence—that is its real target. As far as I can see, most of the 21 commission members are studiously neutral about the bill, with around a quarter strongly opposed. But the plan seems to be to report just before another Commons vote—and put a spoke in its wheels. Subtle it ain’t. Work? It might.
12pm
The most unusual feature of the brand new Terminally Ill Adults (End of Life) Bill Committee is that it features not one but two ministers. They are Stephen Kinnock from the Department of Health and Sarah Sackman from the Ministry of Justice. Both voted for the bill, unlike their cabinet minister bosses, Wes Streeting and Shabana Mahmood, who annoyed the prime minister with their highly vocal opposition to the bill before the debate.
The bill’s sponsor Kim Leadbeater said: “I am very pleased that two ministers will also be on the committee, reflecting the level of engagement and commitment that such an important piece of legislation demands.” It means also that the government has two pairs of eyes overseeing the details of a potentially troublesome new law.
The committee reflects both the Commons vote, with 14 MPs who voted for the bill and nine against, and the make-up of the Commons, with 12 Labour MPs, four Conservatives, three Liberal Democrats and one from Plaid Cymru. You can read the full list here.
The Guardian helpfully points out that of the six Labour MPs on the committee who are pro-bill, four “have a background in health or disability rights: Simon Opher, who is still a working GP; Lewis Atkinson, a former NHS manager; Rachel Hopkins, a former local public health lead; Marie Tidball, a former director of the Oxford University disability law and policy project”.
The most high-profile opponent is the Conservative MP Danny Kruger, who made perhaps the most effective Commons speech against the bill. He told this morning’s Today programme the sort of detail he would be looking at: “How a doctor will prognosticate whether someone is terminally ill. At the moment, doctors are just asked to consider whether it is ‘reasonably expected’ that the person will die within six months. I believe we could refine that definition and apply it consistently throughout the process.
“For example, the bill requires a judge to decide if there has been any coercion in the case. However, there is currently no requirement for the judge to meet the patient, talk to their family, or consult the doctor.
“This lack of scrutiny could, and should, be significantly tightened to ensure proper investigation.
“Throughout the bill, there are a series of specific concerns and potential dangers.”
The presenter Emma Barnett then asked: “How challenging is it for someone like you, who is fundamentally against the legislation, to work on improving it? From your perspective, it doesn’t sound like you believe the bill can ever be made entirely safe.”
“Campaigners have acknowledged that the House of Commons decided to examine the issue more closely,” Kruger responded. “My intention—shared by colleagues on the committee—is to ensure that if the bill passes, it is as safe as possible. Whether you support the bill in principle or have significant concerns about its impact on society and patient-doctor relationships, as I do, the goal should still be to make the legislation as robust as possible if it becomes law.”
This is going to be a fascinating process and I’m looking forward to following all the arguments.
Leadbeater, who choose the committee members, said: “The committee will have the task of going through it line by line and examining any amendments that are put forward. This will follow the taking of oral and written evidence… The committee must now meet to agree the timetable for its work, which will begin in January, but I am confident the bill will receive detailed scrutiny to ensure that both houses of parliament are presented with legislation for further consideration that is workable and rigorous in terms of the rights it confers and the safeguards and protections it affords.”
11th December
12pm
The only certainty, so the oft-repeated quote goes, is death and taxes—and they both collide in an interview with the chancellor by the BBC’s persistent Matt Chorley. But Rachel Reeves does not provide any certainty—far from it.
So, when the assisted dying bill committee is set up tonight, out of a bramble patch of awkward issues, one of the thorniest the members will face is, “Who pays for assisted dying?” Rachel Reeves doesn’t quite say “over to you”, but she certainly isn’t answering “us, the government, the Treasury”. The BBC’s own headline doesn’t do justice to Matt’s dogged questioning, but this morning’s papers do. Here’s a taste of their headlines.
The Express Rachel Reeves refuses to say if assisted dying will be free for terminally ill
The Telegraph: Rachel Reeves refuses to say if assisted dying will be free
While the Daily Mail asks: Will Brits have to pay the NHS for assisted dying?
If the bill becomes law, my hunch is this Labour government will not want to exclude the poor from its remit—but an answer, like the hard cash, may be a while in coming.
11am
It’s a busy day for the assisted dying bill in the Commons. York MP and fierce opponent of the bill Rachael Maskell is launching a 20-strong commission on palliative care, bringing together sector leaders, charity workers and representatives from other organisations.
She tells me, “We plan to issue a call for written evidence before Christmas and then start oral evidence sessions in a select-committee-style approach straight after Christmas, covering a range of areas to ensure we end up with comprehensive services for those at the end of life.”
Many supporters of the bill feel this commission is just a cover for opposition to the bill, so I ask her: is everyone on the commission opposed to assisted dying?
She responds, “No. Many come from organisations with a neutral position. Some members believe, as I do, that comprehensive palliative care provision can address much of the suffering at the end of life. If care is well-managed, the experience can be profoundly different.”
Then, in the evening, around 5pm, the names of those who will serve on the highly important bill committee are unveiled. Maskell fears she isn’t one of them, and she tells me she wants to know why.
11th December
A few days ago, I detailed some of the potential flashpoints when the committee gets underway. Now members of parliament have been writing in their local papers about the assisted dying bill and their concerns, suggesting Kim Leadbeater will have an even busier time in the new year.
North Cotswolds Conservative MP Geoffrey Clifton-Brown writes: “Given the enormous implications that will follow the bill, I sincerely hope the government will take it over so that both the House of Commons and House of Lords will have time to give this important bill the scrutiny that it deserves.” Intriguingly, he doesn’t mention that he abstained, having always voted against similar bills in the past.
He does say he wants full details of the cost implications for the NHS and the courts; “The fact the doctors will have to certify that the person is of sound mind means that they may wish to appear at the hearing in person.
“There may be disagreement amongst family members and there will have to be an appeal mechanism if the judge rejects the application. There are therefore resource implications on the NHS and criminal justice system.” And like many MPs, he’s concerned with the state of palliative care.
“I will continue to raise the problem of funding hospices, which is currently very variable, often relying on donations.”
Claire Young, a Liberal Democrat representing Thornbury and Yate, a seat near Bristol, writes: “Many have said that the focus needs to be on palliative care instead. For me, it is not an either-or situation.
“We should be improving end of life care, but that does not mean people should be denied choice.
“I still have some concerns, specifically around the role and criteria for proxies.”
This is a worry I haven’t heard before—a proxy is someone who can sign an application on behalf of a patient who can’t do it themselves. They have to be someone who has known the patient for at least two years and who is well-regarded in the community.
A proxy cannot be a family member or a beneficiary of the patient’s will.
Rossendale and Darwen MP Andy MacNae, who also voted for the bill and describes himself as a strong supporter, says the vulnerable are already at risk of being pressured.
“Coercion happens now, but in the dark, away from any due process. The rich can travel abroad to skirt legislation, but the poor do not have that choice. On the other hand, this proposed bill is not a perfect solution to the problems we have.”
He tells LancsLive his concerns include clarity of prognosis, the risk of doctor shopping, assessment of capability, awareness of palliative care and risk of coercion. He continues: “I have been consistently hearing that medicine is not an exact science. Doctors can do their best to predict when someone might die, but they cannot know this with absolute certainty. We need to give more thought to how this will work in practice.
“We must ensure that people cannot simply go to one doctor after another until they find someone willing to sign off on their assisted dying when they have been refused for legitimate reasons.
“Doctors are not lawyers. Mental capacity as currently defined in law is a complex term that does not necessarily take account of any mental illness or depression.
“My fear is that doctors will struggle to properly ascertain if patients do have mental capacity.
“If people have the option to choose assisted dying to end a painful and distressing death, they must also be aware of the ways these symptoms can be tackled through palliative care. I am not convinced this proposed bill will currently ensure this.”
All this doesn’t necessarily mean Leadbeater should be worried. But it does mean there’s a lot of work still to do before she can sure of winning the final vote in the spring.
10th December
“I get asked regularly to kill people. Patients ask me all the time: ‘Please, can you kill me? Please, can you end my life? I’m sure you do it secretly, come on.’ The question I always ask is, ‘What would have to change in your life for you to not want to die right now?’ There is always an answer, and I can nearly always improve that thing.”
Dr Natasha Wiggins is an expert in palliative care, and definitely knows what she’s talking about. “I’ve seen thousands of people die,” she says. “Actually, the majority of deaths are very ordinary. They are quiet, they are peaceful, they are dignified. I feel really worried, actually, that the way death from a terminal illness was represented in the debate, in the media, in the rhetoric, is as a screaming, drowning, horrific act. For most people, it’s not.”
When she criticises the Leadbeater bill I sit up and take notice, not only because of her stream of job titles but because she is warm and funny, passionate and thoughtful and I can imagine her being a great comfort to people in their final days. So what are all those jobs?
“I’m a consultant in palliative medicine and the clinical lead for palliative care and end-of-life care—two distinct but often interconnected areas—for an integrated trust that covers both the acute hospital and community services in the southwest of England.
“In addition to this, I chair the regional clinical ethics committee and sit on the board of trustees for the Association for Palliative Medicine (APM), where I’m also part of the executive team. Within the APM, I contribute to the Resource Council, particularly focusing on the ReSPECT form, which is the UK’s updated approach to Do Not Attempt Resuscitation (DNAR) forms.
“I also lead a significant digital project across the southwest, aimed at linking up individuals’ wishes during the last year of life, ensuring that all relevant organisations can access and communicate these preferences effectively.
“I wear many hats in my role, but today, I’m speaking primarily from a clinical perspective, bringing my hands-on experience to this discussion while also representing the APM.”
This interview is part of a series about palliative care, which has been in the spotlight since the vote on assisted dying in the Commons at the end of last month.
First, I ask her what she makes of the bill.
NW: I feel anxious. I think that’s my overriding emotion when I think about the bill. I feel anxious for my patients and their families, and I feel anxious for my colleagues, and I feel anxious for the whole hospice movement.
I’m NHS-employed, and so I have the luxury of not worrying about where my next pound is going to come from. But I know that my hospice colleagues are very anxious.
I have gone through this bill letter by letter, I’ve gone through it with a fine-tooth comb and spoken to several MPs about it—we met with Kim Leadbeater, and we talked extensively about it. When I listened to the debate, I was really surprised to see how many people probably hadn’t read it, based on the questions they were asking and the things they were saying.
When you think about what Kim is saying, and when you think about what people who are pro assisted dying are saying about the bill—about reducing distressing deaths—and then you think about the distressing death examples they’re giving, the first thing I feel is that it’s a gross misrepresentation of the majority of deaths that I see.
For the very, very small percentage where they do have a catastrophic experience, that is wholly unpredictable. If a patient suddenly goes into bowel obstruction or, very rarely, vomiting faeces [as was mentioned by one MP in the debate] I can say, having seen thousands of people die, that I’ve seen that happen once. It’s completely unpredictable.
So the bill as it stands is either going to completely miss those people, because it’s unpredictable, or, what’s more likely, you’re going to have a lot of people dying earlier than they would have done—with some missing Christmases, weddings, or experiences with loved ones—out of fear of something happening that would never happen to them.
When I think about the bill, I think it’s wrong on many levels.
MM: Is your attitude to the bill different to your attitude towards assisted dying?
NW: I think there’s been a real assertion—especially on social media—to label anybody against assisted dying, particularly anyone who works or is involved in palliative care, as a sort of religious zealot who’s for the sanctity of life at all costs.
I’m not. Morally, I feel differently about assisted dying. I recognise that autonomy is very important to many people. But this bill and this process are not sufficient.
This is state-sanctioned suicide—and I know lots of politicians have tried to use euphemisms to sweeten the taste—but this is suicide. This is somebody prematurely ending their life, being helped by others. It is assisted suicide.
When you think about state-sanctioned suicide, we mustn’t think about the most privileged; we must think about the least privileged. How we, as a society, treat our most vulnerable is how we must be judged, and this does not save, support or protect our most vulnerable.
MM: Could any bill do that? I must say, personally I don’t know. I’ve changed my mind substantially on the bill. I mean, I’ve got Parkinson’s. I am one of the presenters of Movers and Shakers, a podcast about Parkinson’s, and we all felt as though it probably wouldn’t extend to us, and it should do. I was in favour of something like “unbearable suffering” in the bill. But having listened to the debate, the fears there, and talked to disabled people in particular, I don’t know how you deal with those fears.
People on my Facebook account have talked about bin wagons coming around picking up the disabled, leading to a final solution in this country. Even if that’s ridiculous—which I think it is—it’s a genuine fear, and I don’t know how you deal with that.
NW: I think one of the things this whole debate has thrown up is the lack of understanding around what palliative care can and does do. Maybe that’s our fault—maybe that’s our fault for having terrible PR. I mean, we don’t have enough funding to deliver the care, let alone pay for a PR company to support us.
But you need something like this to focus on it. This has shone a spotlight on it.
What people often think palliative care is—and even a lot of healthcare professionals think this—is that we come along, hold someone’s hand, and give them a bit of morphine in the last few days of life. But there’s a really important reason why many departments separate palliative and end-of-life care as two separate things.
Palliative care is about helping people live until they die. Actually, the national picture now is about focusing on the last 1,000 days, asking, “What is stopping you living your best life for as long as possible?”
A lot of my job is asking, “What matters to you? What’s important to you? You want to hold your grandson? Okay, why can’t you? Oh, your arm is painful. Right, let’s sort out the pain in your arm so you can hold your grandson. What’s stopping you having a great day? Oh, you’re sleeping badly? Why? Restless legs? Let’s fix that and let you have a great day.”
That’s what we do every day, up and down the country.
When someone gets towards the end of their life, absolutely, we start changing the focus, supporting their energy levels. But the dying part is a really small part of what palliative care does.
This idea that people’s choice is either assisted suicide or dying in agony is such a horrific picture. I feel so cross that people have used that to win an argument, playing on fears and distress to win a debate and then used it as moral high ground. It’s just... it’s not true.
MM: The hospice movement says people don’t want to die in hospital and don’t want to die in the back of ambulances as a rule. Do you agree with that? What do you think about that?
NW: I think, as a clinician working in a hospital and being really proud of the palliative and end-of-life care that we deliver in hospital, I don’t always agree that every death in hospital is a bad death. For some people, that is the right place.
We have patients in our hospital who could go home—we can organise for them to go home—and they say, “No, I’m happy here. I feel safe here. Things feel good here. I know the team.” That’s not a bad death; that’s right for them.
What isn’t right is when people want to be at home, they don’t want to be in hospital, they don’t want to be in an ambulance, they don’t want to be in A&E, but because the social care isn’t right, or because there isn’t the community palliative care support available, they do end up coming into hospital. They do end up dying on the tarmac in an ambulance because there’s a queue out the door. That is wrong.
It’s shameful that in a country that invented modern palliative care, we are still in that situation. But that is largely because the social care system isn’t fit for purpose. The majority of patients that come in are there because their families are on their knees; they cannot care for somebody at home. We have either not had the time or don’t have the funding to put in the social care that we need, particularly at night.
MM: There’s no sign, is there, realistically, of a more coherent approach coming?
NW: I mean, not that I can see. I don’t work in government. I would really hope that the 10-year plan acknowledges that health and social care are inexorably linked.
This horrific term “bed blockers”, which I think is monstrous—these are human beings who need care and support—comes from the idea that someone is in an acute hospital bed when all they need is care.
MM: One of our members of Movers and Shakers went on TV and said exactly what you’re warning about. He said something like, “If you’ve got Parkinson’s, the likelihood is you’re going to have a horrible, long death.” We got some complaints from followers and supporters, but I just wondered... his argument, and mine when I started with this, was that whether or not it’s inevitable or just a marginal possibility, unbearable suffering should be considered as a category rather than... you know. The point being, I’m not sure you can say someone with Parkinson’s will die within six months of a terminal illness. What are your thoughts on this?
NW: I think partly we are notoriously bad at prognosticating. Prognostication is the ability to estimate how long someone has left before they die and, on the whole, we’re terrible at it.
The closer you get to the end, the easier it is to estimate, but I’m talking about days or short weeks closer—not six months. From my perspective, as someone who took part in one of the studies and was identified as being in the top one per cent for accuracy in prognostication, I would find it almost impossible to look at someone and say with confidence, “You have less than six months,” or, “You have more than six months.” I just couldn’t do that.
So I don’t know where Kim Leadbeater thinks they’re going to find all these clinicians who will confidently say, “You have less than six months,” when someone’s life is at stake in that answer.
When I think about suffering, I often think of something called the “Calman gap”. The Calman gap is the space between expectation and reality. Often, when I meet someone for the first time, their suffering is high, and their Calman gap is large.
This is especially true for people who have had control over their lives, who are used to being in charge, and who don’t feel they are at the mercy of others. For those people, the idea of being vulnerable, dependent on others or out of control feels terrifying and completely unacceptable.
If assisted dying suddenly becomes an option and funding is diverted from palliative care to assisted dying—as has happened in other countries—then how many of those patients won’t get the chance to say, “Actually, this is the thing causing my suffering, and this is what I need to improve it”?
Over time, what initially feels unacceptable becomes acceptable. When I see patients who last week were saying, “I know you could kill me if you wanted to; why don’t you?” and now they’re planning a holiday because they’re sleeping better, their pain is under control, or their breathlessness has improved, I see why my job is so rewarding.
That’s why we do this job.
9th December
One of Donald Trump’s most powerful—and most loyal—political allies, Mike Johnson, has attacked the assisted dying vote in the House of Commons as “a sad and shameful day for the English-speaking world”.
Given Trump and Elon Musk’s outspoken criticism of Labour it will hardly make the job of British diplomats any easier, but the real question is whether the president-elect will act at home to please his evangelical supporters.
Johnson, the Speaker of the US House of Representatives, broke with convention to criticise the domestic policy of a foreign country on a “point of personal privilege”, telling a news conference: “Any society that rejects that truth about life as a gift from our creator and adopts a culture of death is a society that is in the process of crumbling. So-called assisted death endangers the weak and marginalised in society, and it corrupts medicine, and it erodes our obligations to family. And I hope and pray that the people of the United Kingdom will work through democratic means and reverse that legislation.”
Nobody should be surprised by this: long before he tried his hand at politics Johnson was a lawyer for the Alliance Defending Freedom (ADF), a conservative Christian legal advocacy group. As he told a Baptist paper, “I’ve been out on the front lines of the ‘culture war’ defending religious freedom, the sanctity of human life, and biblical values, including the defence of traditional marriage, and other ideals like these when they’ve been under assault.”
This included not only opposing gay marriage but defending anti-sodomy laws, leading to a fellow Republican calling him a “despicable bigot of the highest order”.
Officially, the Louisiana congressman is second in line to the White House succession, after the vice president JD Vance. Despite being a relatively obscure figure before his rapid elevation, he now wields significant power as the leader of the Republican majority in the House. Unlike the nonpartisan speaker of the Commons in the UK, the role in the US is deeply political, akin to a watered-down prime minister in terms of legislative influence.
It was therefore inevitable that reporters asked Johnson whether he would pursue a federal ban on assisted dying in the 10 states (plus Washington, DC) where it is currently legal. Johnson’s response was cautious but suggestive:
“I suspect we’ll have conversations about that. We don’t have any legislation planned at the moment. But it’s going to have to be part of the dialogue going forward because as that trend continues, I think we need to stand out for the respect for life.”
However, any immediate federal push appears unlikely. But it is far more likely that Maga supporters will try to outlaw assisted dying in individual states. While it remains illegal in 40 states by default, some are taking further steps. Last month, West Virginia amended its constitution to explicitly prohibit participation in “medically assisted suicide, euthanasia, or mercy killing”. Although this change does not alter its legal status, it is symbolically significant, making future reversals more difficult.
Austin Sarat, a professor of jurisprudence and political science, has warned against underestimating these efforts. “In the wake of the presidential election, some people may be tempted to think that Trump and his cronies’ desire to tell people what they can and cannot do with their bodies is just a problem for women seeking abortions or transgendered citizens. They should think again.”
It is yet another area where Trump personally probably has no strong feelings, but he will need to pump up his base ahead of the midterms in 2026. If he wants to know what evangelicals want, Speaker Johnson is the man to tell him, so watch this space.
