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
5th December
5pm
A national palliative care strategy must be included in the assisted dying bill, according to the biggest end-of-life charity, Marie Curie. It has welcomed Labour MP Rachael Maskell’s plans for a commission on what it says is a crisis in the sector. Another big charity, Hospice UK, is calling on the government to immediately spend £110m on palliative care to stop the closure of hospice places.
Those are the headlines, and more on them in a moment, but there’s been so much talk about palliative care following Friday’s vote that I thought it was worth talking to a series of experts about it. First up is Sam Royston, Marie Curie’s executive director of policy and research. While the term has been bandied about a great deal, what does it mean?
He tells me: “Palliative care prioritises well-being over longevity, focusing on easing symptoms and improving quality of life rather than seeking cures. It is essential not just at the end of life but throughout the journey of living with a terminal illness. Ideally, it should complement treatment and transition gradually as treatment options diminish. Yes, longevity matters, but so do other things, especially towards the end of life.
“It’s about looking beyond just medical treatments and thinking about what makes life better in the moment. For people with terminal illnesses, this approach can be a game-changer, though it’s sadly overlooked in health systems.”
MM: So it’s not about curing the incurable but about easing symptoms and focusing on quality of life?
SR: Exactly. It’s not a case of “either you go for treatment or you focus on wellbeing”. Ideally, palliative care runs alongside treatment, increasing in focus as treatment options diminish. Unfortunately, what we often see is an abrupt shift—treatment, treatment, treatment, then suddenly: palliative care. It should be a smoother, more integrated process.
MM: Your report earlier this year suggested that end-of-life care is in crisis. Why?
SR: Yes, sadly. One in four people who need palliative care don’t get it. Many end up in hospital unnecessarily because they’re not supported at home. Charities like ours are under huge financial strain, and it’s ridiculous that half of our funding comes from things like charity events like marathons and cake sales. Imagine if that was how cancer or maternity care was funded!
Marie Curie, for example, faces additional costs due to the decision to increase employer National Insurance contributions. This will place a strain on services already heavily reliant on fundraising.
It might be said that the biggest single thing that the government has done around palliative care in the last year is the additional employer national insurance contribution costs that charities delivering palliative care are likely to face in future, without action. This has substantially increased the financial burden on the sector, with no sign from the government of additional financial support to offset these costs. For Marie Curie alone, this represents £3m of additional costs that couldn’t have been planned for. If the government doesn’t address this, there’s no way it won’t affect the services we’re able to offer.
MM: What do you think of the idea of a commission, which will be led by Labour MP Rachael Maskell?
SR: We have spoken with Rachael and will be delighted to support the development of a commission on palliative care. There’s certainly much more to learn and much more evidence to gather to drive improvements in palliative care for the future. We very much welcome the work that Rachael has put into establishing the commission. We are keen to be involved as we can to support this important initiative.
MM: Palliative care has been discussed in recent debates. Is the charity neutral on the topic of assisted dying?
SR: Yes, Marie Curie maintains neutrality on assisted dying. However, we are far from neutral when it comes to the need to reform and improve palliative care.
In the context of the assisted dying debate, I think it’s essential that we see action on the bill itself as well. While the work of a commission will be important to gather evidence and provide insights for the future, the assisted dying bill must also include provisions to improve palliative care. It would be wrong for this bill to pass without substantive measures addressing palliative care provision. For us, this means implementing a national palliative care strategy, which does not currently exist in England.
Marie Curie proposed a clause on improving palliative care to the Leadbeater bill, but it was not included in the bill as drafted.
The strategy must include a commitment to minimum service standards, particularly ensuring 24/7 support for terminally ill people. At present, access to care outside normal working hours is a significant challenge. For instance, if someone wakes up in excruciating pain in the middle of the night, they are far less likely to receive specialist support than if it were mid-afternoon. This is unacceptable. Too often, people in these situations are left with no choice but to call 999. We need to address this gap.
This strategy must also be backed by sustainable funding. The current funding model for palliative care across England—and indeed the rest of the UK—is fragmented and inadequate. We need a coherent plan that ensures consistent financial support for these essential services.
In addition, workforce planning is critical. We need a comprehensive approach to improve palliative care training, not only to strengthen the specialist workforce but also to embed these skills in general practice, ambulance services and hospitals. Every healthcare setting should be equipped to support individuals at the end of life effectively.
While these measures require investment, I don’t believe it’s solely about new money. It’s also about reallocating existing resources. No one wants to die in the back of an ambulance. No one really wants to spend lengthy periods at the end of life in hospital. We need to shift services away from reactive, emergency provision, like 999 callouts, and towards community-based support that allows people to stay in their homes.
This approach would not only improve patient outcomes but also alleviate pressure on hospitals, allowing them to focus on patients who truly need inpatient care.
This isn’t to say that additional funding isn’t required—there likely will be a need for some new investment, particularly to transform care delivery—but there is significant potential to use existing resources more effectively.
MM: What does a good death look like at a Marie Curie hospice?
SR: Well, I think a good death is all about respecting individual preferences. There’s no single model for a “good death”. It’s about responding to what people need as they approach the end of life. One thing Marie Curie does really well is making sure people are listened to—hearing their preferences and seeking to meet those needs.
A really important part of delivering palliative care is what’s called advance care planning. That’s about working with people who are dying in order to understand their preferences and wishes for how they want to be supported at the end of their lives. So, I wouldn’t say there’s one way to support someone towards a “good death”. It’s about making sure people’s individual preferences are heard and acted on.
Of course, there are some common themes. For example, we’ve found—through initiatives like our Public attitudes to death and dying survey—that effective pain relief is absolutely crucial. Good palliative care focuses on that. Another common preference is dying in a place of choice. For many people, this means staying at home. Marie Curie, like other palliative care services, does everything possible to support people in achieving that.
And then there’s the importance of addressing loneliness and enabling people to have loved ones with them. For many, having the people they care about with them at the end is incredibly significant. Not for everyone, of course, but for many it’s a key part of their choices. We work hard to facilitate that wherever we can.
But I’d stress that it’s never as simple as saying, “This is what a good death looks like.” It’s like saying there’s one way to have a good life—it’s just not true. What matters most to each person is unique, and that holds true at the end of life as much as at any other time.
11am
After writing a long list of potential flashpoints yesterday I came to the trickiest part and so paused. I am not sure anyone will be brave enough or foolhardy enough to put forward an amendment on unbearable suffering—but surely someone should test the water. There are certainly those outside parliament who want to expand the bill beyond the narrow confines of a six-month terminal diagnosis—in a bill where the whole purpose is to prevent suffering it seems distinctly odd to exclude it. The argument is put with typical force and eloquence by my friend and fellow “mover and shaker” Nick Mostyn in a Daily Telegraph interview.
“Even if [this bill] was passed in its current form, there would be challenges—it’s arbitrary and discriminatory,” he said. “The present bill doesn’t mention suffering. You could not be suffering and still qualify for this because you happen to be within six months of death according to the opinion of two doctors. I think if you made the criterion ‘unbearable suffering’, it actually addresses what this procedure should be designed for… it should be available to relieve suffering.”
Indeed, I made that argument strongly in my first piece here. But I also said I knew where I was coming from but not where I was going to. So, I have partially, reluctantly changed my mind. Not emotionally. Not intellectually. But tactically. Having listened to every single word of the debate I believe it is crystal clear that it would never have passed unless very tightly restricted. Too many MPs had too many doubts for it to pass unless it was very narrowly drawn.
So this is not so much a flashpoint as a series of potential explosions.
Protecting the vulnerable from coercion. This is the crux of it all. There are bound to be multiple amendments trying to make sure people who sign up do so of their own free will. I presume this is why the bill already contains the rather odd condition that the patient has to take the deadly drugs themselves, rather than them being given by a doctor.
There will be calls for better training for doctors in spotting coercion and perhaps demands other specialist are involved in the process.
Coercion is difficult to prove and difficult to prevent but I expect lots of proposals in this area. What shocked and alarmed me last week was the genuine fears of many disabled people that they will eventually be bullied into an early death if this becomes law. After I did a post on Instagram/Facebook promoting this blog one woman added a long comment including
“The disabled community will be hiding behind closed doors like they used to. Their loved ones will be coerced by bullies—I ought to know as I have been bullied and threatened and attacked throughout my life.
“Yes, we all ought to be terrified that this will lead to a horrifying slippery slope—remember Hitler’s evil Final Solution.”
These fears—and even those more moderately expressed—seem far-fetched but sadly there is no doubt they are genuine. Disabled people feel ignored and under-valued. Which is why when the committee meets you will hear a lot about this issue.
The slippery slope. At the heart of Leadbeater’s bill is the belief there are enough safeguards to stop Mostyn or myself ever getting what we want. Disability rights campaigner Phil Friend doesn’t think this is possible.
“This is a Trojan horse. What you’ve done now is you’ve got the agreement that assisted suicide should be legal,” he says. “Now what you do is you get all the people that are talking about this to widen its scope. Is Dignitas going to shut up shop and go away? Is Dignity in Dying going to give all their money to charities now because they’ve achieved their purpose? They’ve got the law and of course, what they’re going to do now is campaign to broaden it. That’s exactly what it’s about. So, our fears aren’t for the immediate future. It’s for a year or two years down the line. Let’s see what happens then, because I’ll put my mortgage on it.”
Leadbeater’s supporters argue that the very title of the bill limits it to being a law to permit assisted dying for terminally ill adults only and they argue there is no possibility it could be amended to apply to a wider category of people. They say there is simply no possibility that the European Convention on Human Rights could be used to expand the law. Strasbourg has been clear in the many cases it has heard on assisted dying in other European countries that it is an area for each Member State to decide for itself. The Court has never ruled—in favour or against—on the core criteria of assisted dying laws. All this may be true, but as Mostyn says, it will be challenged. MPs will be determined to find the right words so that no litigant would have a chance. What they can’t do is prevent future MPs from voting in new laws that would fundamentally change the criteria.
What they can do is find a form of words to make it absolutely clear that no medic, no government and no official will regard disabled people as “better off dead”. Then they can join the campaigns to prevent the inequities and inequalities that lead them to fear state-sponsored murder. So is my journey over? Even tactically? Have I now accepted the limited nature of this bill? Watch this space.
3rd December
If you agree with whoever it was who said “laws are like sausages; it is better not to see them being made”, look away now. Because I’m odd, I’d quite like to watch as a bit of prime pork, maybe with some fennel seeds and sage, is turned into premium bangers. It’s interesting. And I’m pretty excited about seeing what goes in making a law out of the assisted dying bill: what will cause ructions and rows, and who will threaten to change their vote if they don’t get their way.
Some campaigners against the bill are pinning their hopes on what happens when MPs meet in a committee to go through it line by line. Phil Friend, from Not Dead Yet, is one of them. He was outside the Commons protesting as MPs voted.
“I was at the demo freezing my nuts off for my pains, you know, being in a wheelchair and stuff, and disability doesn't equate very well with the British winters, that's for sure,” he tells me. “I think we just felt incredibly disappointed at the time when the result came through, there were quite a few people in tears, some very emotional scenes from one or two people. Personally, I wasn't surprised. I thought that this might happen. The question now is: do we still try to stop this bill going through? Or do we make sure that it’s at least better than it was on Friday?”
That’s the opponents’ dilemma. In victory, Kim Leadbeater strikes a careful balance of humility and resolve. She’s keen to counter the scepticism voiced during the debate—particularly claims that the bill would lack effective scrutiny. This means accepting the possibility of really substantive amendments. She’s telling colleagues that she is very open to those that would make the safeguards stronger, and that she is very aware that MPs have legitimate questions and concerns that would clarify exactly how assisted dying would be offered as a choice to the terminally ill.
She is telling colleagues some of those questions can only be answered by the government, so it is a good thing that a minister will be on the committee. We don’t know who yet—but they will have to answer the huge question: how do we pay for all this?
So what are the other likely flashpoints?
Palliative care. There is near universal agreement among MPs who spoke in the debate that palliative care needs to be improved, whether as an alternative to assisted dying or in order to deliver it. But there’s likely to be disagreement over how much that should be part of the bill.
Royal Commission. Many opponents of the current bill suggest there should be a full investigation before the bill returns to the Commons. As that would take years, this would be seen as a wrecking amendment and it would be fought fiercely if anyone did try to introduce it.
I ask Phil about Not Dead Yet’s plan and he says they haven’t discussed it yet, but my question has made him ponder the possibilities.
“I think what we’re thinking about is pushing for a government stance with a Royal Commission and a proper look at this. Then developing something where the safeguards would be safer and where resources are part of the game, because that’s the issue here. This has been made in the middle of a budget which is telling us that we’re broke. We haven’t got any money. The country’s broke, and then you’re suddenly increasing the workload.”
Who initiates the conversation? This is one of the most controversial details of the bill. Currently, it says doctors should be allowed to raise the subject of assisted dying with a person with a terminal diagnosis, raising fears this could put pressure on the patient. Three MPs who supported the bill have told the BBC they want this changed. One, Mike Tapp, the Labour MP for Dover and Deal, said it must “be specifically stated in the bill that medical practitioners are not to raise assisted dying with any patient. It should only be discussed if it is raised by the patient. This helps mitigate the risk of accidental coercion, or the perception of a hint, at a time of immense emotional distress and vulnerability.” But the British Medical Association does not want this to be forbidden by law.
Conscientious objectors. It is quite clear from the bill that doctors, nurses and others who might be involved, such as pharmacists, can opt out of taking part in assisted dying. Some will want this provision to be watertight, with more explicit detail about which organisations can also opt out—private care homes obviously, but a hospital trust perhaps not. But there is a model: the 1967 Abortion Act.
Role of judges. The bill is unique in the world in that it appoints a High Court judge to approve the request from the patient and two doctors. But the exact role will have to be clarified. Do they merely rubber stamp it (in which case what is the point?) or do they act like a trial judge or an investigating magistrate? On what grounds could they deny a request? And how would the overburdened and under-resourced courts system cope with a new workload? Lots of work for lawyers here!
Six-month terminal diagnosis. Why six months, not four or eight? We all know of cases where doctors have given someone a short time to live and they have survived for years. It seems unlikely that anyone will change their vote over this issue, but doctors will be pressed to explain. And how do we define which diseases count as “terminal” What about Parkinson’s, for instance?
Now this is getting personal. It will also take us to the core question—how to protect the vulnerable from coercion.
Which is why I will leave the rest of the sausage-making until tomorrow. To be continued.
2nd December
The world changed for everyone on Friday afternoon, when the assisted dying bill passed its second reading by 55 votes. Some campaigners were horrified. Bishop Philip Egan of Portsmouth said: “Britain has now crossed a line: things will not be the same again. May God help us.”
The world certainly shifted for the government, which now faces the perennial question: “yes, but who’s going to pay for it all?”
On Friday the Commons was at its best—a rarity in itself. The mood was sombre, quietly emotional but undramatic, MPs thoughtful and respectful of each other’s point of view. But now lurid headlines are back. Veteran Labour MP Diane Abbott told the BBC’s Sunday with Laura Kuenssberg: “We’re moving to a situation where it will be cheaper for a GP to get a very ill person to sign on the dotted line for assisted suicide than to find them a place in a hospice.” She urged the government to spend more on palliative care.
Indeed, if one point of unity has emerged from this debate it is this: MPs on both sides agree there must be stronger, more coherent palliative care available. Inevitably, this translates into demands for more funding from an already overstretched government and a “broken” NHS. The Guardian reports that a commission on palliative care is being set up by the Labour MP Rachael Maskell, who fiercely opposed the bill, and organisations and medics that currently deliver end-of-life care—Hospice UK, Marie Curie, Sue Ryder, and the Association for Palliative Medicine. I’m planning to investigate the whole subject more by the end of the week.
Finding the hard cash is not the only headache for the government. For many Labour politicos it is an unwelcome distraction from their priorities and will eat up government time and ministerial energy. Immediately after the vote the Cabinet Office issued a bland, non-committal “hands off” statement: “We understand this is a deeply emotive issue, with strongly held views on all sides. That is why it was a free vote for MPs, allowing parliament to decide independently of government.
“As the bill progresses through parliament, MPs will further debate and scrutinise the legislation and we will respect its will.
“This continues to be a matter for parliament.”
Up to a point, Lord Copper. Buried in notes at the bottom of this news release was the fact that work would now start on assessing the impact of the bill—usually that isn’t just the cost, but a wide range of topics including the regulatory burden, health and wellbeing, human rights and justice, and equality legislation. It will eventually make very interesting reading, but what I’d really like is to be a fly on the wall while it is being discussed and written.
It will take a good deal of political judgement, as the impact assessment could have an outsized impact on the debate. It is just one of the factors which may still sway those 330 MPs who voted for the bill as well as the 31 who abstained.
Campaigners against the bill believe many of those MPs are only tentative in their support and that by the time that it comes back to the Commons, probably next spring, they may be ready to chuck it out. While opponents acknowledge Friday’s vote as a significant setback, they will carry on fighting. They have lost an important battle but the war is far from over.
The next skirmishes will probably unfold in the new year or whenever the committee to examine the bill meets for the first time. Because this is a private members’ bill it is a bit of a strange beast. Kim Leadbeater gets to choose the committee members, and she has promised to include critics as well as supporters—but the choice itself gives her some power to flatter and persuade.
She has also said that the committee will have the power to hear witnesses and call for written evidence—and that is a first for a private members’ committee. As I understand it she won’t be the chair because for private members’ bills there are two chairs, who cannot vote and must be neutral. They are chosen from the delightfully named panel of chairs by the Commons Speaker.
The line-by-line scrutiny will take place every Wednesday when the House is sitting. I’ll be looking at potential flashpoints. Opponents view this as a prime opportunity to derail the legislation, exploiting any perceived weaknesses and winning the propaganda battle during the committee’s deliberations.
Their strategy hinges on sowing doubt among MPs who supported the bill with reservations. They hope these MPs won’t find the proposed safeguards convincing once subjected to post-Christmas scrutiny. The committee, scheduled to meet every Wednesday, is expected to deliberate until at least April before reporting back to the Commons, where another vote will follow.
For the bill’s critics, this prolonged process is not just a chance to pick apart the legislation but also to chip away at the fragile support it currently enjoys. I’ll follow every twist and turn.
