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
15th November
3pm
Exactly two weeks to go until the big debate and I’m pretty confused. I’ve been arguing that the Leadbeater bill is too lily-livered—but does the evidence from other countries suggest my fears are groundless? One doctor from California suggests so. And if that is the case, does that strengthen the argument that the bill is a slippery slope? If it became law, would that lead to a broadening and widening of its scope?
My argument that the Leadbeater bill doesn’t go far enough is essentially selfish. Despite and because I have Parkinson’s, life is very precious to me—but if it ever became intolerable I want the right to have medical help to kill myself. “Intolerable” is of course subjective but that is sort of the point: I want sovereignty over my own body. But that is my criteria, not the bill’s, which requires a diagnosis that someone has an illness that means they will die within six months.
I’ve assumed that would exclude people with Parkinson’s because we could never meet the criteria of a terminal diagnosis of death within six months. That is because it has been drummed into us that you die with Parkinson’s not from it. It is a degenerative condition which doesn’t directly kill you and while associated accidents such as falling and choking may do, they are by definition unpredictable. So we assume no doctor would sign us up, even if we are in a great deal of pain, doubly incontinent, speechless and blind.
But Dignity in Dying says this is wrong. The UK campaigning group writes to me: ‘In all jurisdictions with assisted dying laws based on terminal illness, the largest group of people using the laws have terminal cancer, and a significant minority of people using the laws are in the terminal stage of neurological disease.
Of those accessing assisted dying with neurological illness, people with motor neurone disease make up the largest group.
The annual reports show that people who are terminally ill with other neurological diseases including Progressive Nuclear Palsy (PSP), Parkinson’s disease, Multiple Systems Atrophy (MSA), Multiple Sclerosis (MS) and Huntington’s Disease can also access these laws.”
If you think this is a niche obsession of mine, well, you’d be right. But it matters. Parkinson’s is the fastest growing neurological condition in the world. Around 153,000 people have Parkinson’s in the UK. But it is not just that—the facts suggest wider interests are at stake.
So there you have it. The Leadbeater bill sets out plans to record and publish yearly statistics and the same happens wherever assisted dying is legal. I’ve been digging into a few of them to unearth some factual nuggets.
In California the End of Life Option Act (EOLA) “allows an adult diagnosed with a terminal disease, who meets certain qualifications, to request the aid-in-dying drugs from their attending physician.” In the eight years since it became law 24 of the people who chose to die had Parkinson’s listed as the “underlying illness”.
In Colorado of the 1476 who have chosen to die since 2017, when the End-of-Life Options Act was introduced, 48 were listed as having Parkinson’s. The conditions demanded are very similar to the Leadbeater bill. Both depend on a six-month terminal diagnosis.
There are similar figures from Oregon, Maine, Vermont, Hawaii and Washington state.
In Australia’s Victoria state which also has the condition of a six-month terminal condition the most recent report (for 2021/2) includes 25 people with “other neurodegenerative conditions, including Parkinson’s”. So it does seem that, in at least two countries, doctors do regularly find in certain cases that Parkinson’s is a terminal condition.
So what is going on here? Are doctors in these areas using looser definitions of “terminal” and “six months” than we would expect?
Dr Ryan Spielvogel is a medic from California who tells me he has helped “many, many” people die and that “it has been incredibly rewarding helping them to stop suffering and allowing the fear to go away. It is one of the most rewarding things I have ever done as a physician.” What about those 48 people who had been allowed to die in his home state because they had Parkinson’s? Don’t we all agree Parkinson’s doesn’t kill you?
“To an extent—that is like saying it's not cancer that kills people it is cardiovascular collapse,” Spielvogel says. “Yes Parkinson’s kills people—we can tell the prognosis when people are fighting multiple infections and losing functions, these are predictors of demise. To be clear, eligibility is not about diagnosis but seeing the progression to dying, and it is like fitting together parts of a puzzle.”
But wouldn’t “intolerable suffering” be a better qualification?
“This is a very large debate within the community of those who aid the dying but it is largely philosophical.” He says Canada has adopted this criteria and has opened a Pandora’s box. “It is a valid conversation to have while we pass this bill.”
He dismissed the argument that palliative care wasn’t up to scratch and that is what should be improved. “For doctors to say, ‘we don’t have an option over here to effectively treat your suffering therefore we also don’t have an option to end your suffering through assisted dying’ is absolutely ridiculous. It’s like saying, ‘I’m sorry there’s not a maternity care provider in your area so abortion services are not allowed in your area.’ I don’t think people of the UK would stand for that but it is a bizarre argument that keeps coming up.”
What about coercion by relatives? “It is simply not the case. Every single doctor who has done this has seen people coerce their families out of it. The day before I got on the plane to the UK I was brainstorming with a colleague because there’s a patient who is bedridden at her sister-in-law’s house, and who wants to do assisted dying. But her sister-in-law is absolutely forbidding it. So we were brainstorming about how to get the patient out, renting a room somewhere to get around her sister-in-law forbidding it. This is the sort of coercion that happens, not the other way round.”
He says of the slippery slope argument: “the proof is in the pudding.” In jurisdictions where assisted dying has been introduced, the law may have since been loosened or made less restrictive, but never reversed or made tighter.
“So that argument on its own speaks worlds, and I think people who are opposed, a lot of them are opposed for underlying religious reasons. Which is fine, for them, but they’re using these arguments which have been debunked over and over again, as a straw man to hide the fact they are just personally opposed to it. They are just using false flag arguments—I truly believe that a lot of people making these arguments are making it in bad faith because they are personally opposed. And you know what ? If you are personally opposed you don’t have to do it, and as a patient, when your time comes, guess what? You don’t have to do it! It’s the same as abortion and gay marriage—you don’t have to do it but don’t take away the option from those who do want to do it.”
But, in return to my main point, I repeat the central question: can you say with enough certainty to meet legal guidelines that a person with Parkinson’s will be dead within six months?
“I think that neuro-degenerative diseases are difficult, the most difficult to predict and I have treated people with Parkinson’s and have helped them with their death. Yes, we can predict with a reasonable degree of certainty six months from death. Difficult, but not insurmountable.”
After speaking to Dr Spielvogel, I ask one senior British neurologist what he makes of it all. He replies: “It’s a tricky one! In my view, in the vast majority of cases you die ‘with’ and not ‘from’ Parkinson’s. But you can’t be absolutist about it. There will be cases (particularly young onset) where it is possible to argue that Parkinson’s is the cause of death.” He adds: “I’ve always been uncomfortable with how death certification works. For example, a patient may die as a result of pneumonia but did that pneumonia occur because they had a stroke which affected swallowing four months earlier?”
Both doctors are making similar points, that the underlying cause of what is killing you can be Parkinson’s—and Dr Spielvogel says it can fit the criteria of the bill. Which reassures me to an extent—but may alarm opponents.
12pm
As I suggested below, some other big players are unhappy with the health secretary’s intervention. Harriet Harman has commented: “He should not have said how he was going to vote, because that breaches neutrality and sends a signal,” adding that people should not mistake Streeting for being “a kind of proxy for Keir Starmer”.
“The government is genuinely neutral and all of those backbenchers, they can vote whichever way they want."
In another blast from the past, Margaret Hodge has told the BBC: “If you look at the NHS budget, most of it goes on the last six months of life… to argue that this is going to cost extra sounds to me a bit daft.” It will be interesting to see if Streeting withdraws to the corner to nurse his peer-rapped knuckles, or continues unabashed.
14th November
5pm
Doyen of Bake Off, 84-year-old Prue Leith, who has told Bella magazine that she’s “near the end”, is just one of the celebrities who’ve welcomed Kim Leadbeater’s bill. She talks movingly with Michelle Ford on the Two Women Chatting podcast about the “tremendously obvious” arguments in favour of assisted dying. She tells of how she met a woman in Canada whose mum and dad died together at home in their own bed holding hands and says: “it made me cry; it was so perfect”. She argues that 7,000 people a year die in awful pain in NHS hospitals when they should be allowed to die at home. When Michelle talks of the way pets can be given a favourite last meal and die while being stroked by their owner she says, “God, give me a dog’s life.” This is an argument we will return to. I’ll also be checking out her claim that a select committee found “there had never been a case”, in the entire world, of someone being coerced into assisted dying. The interview is a good listen beyond this subject—she makes a strong case for bold colours and bold behaviour in old age. Oh, and why we should spend more on glasses and necklaces, and less on shoes and handbags.
11am
The health secretary has really stuck his oar in, good and proper. Wes Streeting, who has already made clear his opposition to the assisted dying bill, has ordered a review into how much it might cost the NHS if it is passed. He warned: “any new service comes at the expense of other competing pressures and priorities”. And he added for good measure: “That work is now underway, so I can’t give you a precise figure today. You do touch on the slippery slope argument, which is the potential for cost savings if people choose to opt for assisted dying rather than stay in the care of the care providers or the NHS.”
So he’s arguing that it could save the NHS money in a bad way, or damage other services.
That such a big player has made this not very subtle intervention—you might almost call it a threat—will raise eyebrows in Westminster. It does seem to fly in the face of the advice of the cabinet secretary’s advice to all ministers:
“At the despatch box, ministers should reiterate that this is a question for Parliament, on which the official Government position is to remain neutral. Outside of Parliament, all ministers should take the same approach in all forms of media, including social media. Though ministers need not resile from previously stated views when directly asked about them, they should exercise discretion and should not take part in the public debate.”
Some junior ministers who have stuck to the rules despite being strongly in favour of the bill are said to be miffed by the intervention and are all the more determined to get the bill through.
So is the review a step too far by a very canny, ambitious political politician adept at using the media, or a wise and sensible precaution from the man in charge of a service that is strapped for cash? You decide—but I already have: it is both, and that is why Mr Streeting is sometimes seen as so sharp he might cut himself.
13th November
A war of words—the battle for language
If you go on to the website of the “right to life” pressure group you will see an eye-catching display, a constantly scrolling list of MPs, whom people have contacted, urging them to vote against the Leadbeater bill. Above is a barometer-style bar going from yellow to orange to red, suggesting rising numbers. With just 16 days left before the debate, it visually adds heft to a building sense of urgency.
Graphic images, such as the accompanying one of an outstretched elderly, wrinkled hand holding two red pills, are important in this battle for votes, hearts and minds. But they are nowhere near as important as the battle to control the language. I don’t mean all those harsh, strong words in the text like “extreme”, “critical” and “it is outrageous that MPs and the wider public are only seeing this Bill barely two and a half weeks before it goes to a vote. What is being proposed is a monumental change to our laws, and it’s totally unjustifiable and fundamentally undemocratic to try and rush it through without proper public scrutiny.”
No, what interests me is the words in a huge, bold font: “Ask your MP to stop assisted suicide being rushed into law.” Particularly the two words in underlined and in bright orange: “assisted suicide”.
The title of the bill is “assisted dying’ but campaigners against the change tend to use this alternative phrase. “Committing suicide” is a phrase we are often encouraged to avoid—it is seen as pejorative, raising memories of a time when killing yourself was illegal. Defining what things are called is at the cutting edge of politics. When you’ve forced your language to come out of the mouths of your opponents, it is an important victory.
Especially if it sticks in their craw. I hate it every time I am forced to use the term “woke”. For ages I’ve argued long and hard that the word and its predecessor “political correctness” (whether or not “gone mad”) are mostly hard-right speak for common decency and respect. But in using it, I am not just giving into the mainstream, but recognising there is a point to the cultural warriors’ argument, that there can be something wearisome and over the top in some on the left’s enthusiasm for policing behaviour and, yes, language. Or take the universal acceptance of David Cameron’s “austerity” with its flavour of noble wartime sacrifice, rather than Thatcher’s “cuts”—hurtful and inflicted, rather than shared pain.
In this case, the bill’s opponents are handed a fresh argument by the surprising condition that the fatal dose has to be “self-administered”. Whether or not one approves of the word “suicide”, there is a new justification to regard what happens next as “killing yourself”, rather than “being helped to die”.
Those on the other side need to deploy euphemisms to put the debate in soft focus. The cleverest I’ve heard is “It’s not about ending their life—it’s about shortening their death.” But sometimes euphemism can work the other way: when I came across the organisation Families Against Involuntary Medical Euthanasia, their very name pulled me up short, and made me shiver. Of course, they are also against Voluntary Medical Euthanasia too, but that doesn’t lend the same Orwellian tang to their campaign against “ageist culture enabling State euthanasia”. It all brings a new meaning to the phrase “a war of words”.
12th November
5pm
If you watch tonight’s BBC News at Six you’ll see a report on the assisted dying debate by Fergus Walsh featuring the “Movers and Shakers” podcast, of which I am one of the six presenters. He asked us to revisit our original episode about the bill and restate our arguments. The first time around Jeremy Paxman had been ill and so absent but this time around he was keen to have his say:
“If you really want my opinion, I think this bill is a fucking waste of time. I’m sick and tired of MPs presuming to know what is best for us all. They always proceed at the speed of the slowest ship in the convoy.”
But some MPs apparently aren’t “presuming to know what is best” and need a little guidance. Shrewsbury’s labour MP Julia Buckley told Radio Four’s World at One she would hold two separate events to hear the pro- and anti-bill arguments from constituents.
East Thanet’s Polly Billington has already held a meeting in Margate after which she wrote: “It was a humbling experience to hear stories of pain and loss at the event. And it was reassuring to know that whatever side of this debate people are on, they all—like me—want to place the wishes and interests of those experiencing the immense trauma and suffering of a terminal illness at the centre of this discussion.”
Those more timid souls inclined to play follow the leader, are getting few hints from Keir Starmer: “I’m not going to be putting any pressure whatsoever on Labour MPs. They will make their own mind up, as I will be.” One of his cabinet, Ed Miliband, has become the latest to take a view, telling Sky News he’d vote in favour.
With apparently 100 Labour MPs undecided, perhaps this is the way to go? Or what about taking notice of the recent citizen’s jury? Their conclusion: “of the 28 jury members who were able to participate in the final vote, 20 either strongly agreed or tended to agree the law should change to permit assisted dying in England. This compares to 7 who said they either strongly disagreed or tended to disagree with a law change. One person was undecided.’ Perhaps they were a Labour MP.
11am
This is a huge moment in the assisted dying debate: Kim Leadbeater’s bill was published last night at 10pm—just in time for the main news bulletins and morning papers. Leadbeater claims the protections it offers are “the strictest safeguards anywhere in the world” including the need for a six-month terminal diagnoses, the approval of two doctors and a High Court judge, the insistence that the fatal drugs must be taken by the patient themselves (not administered by a doctor) and that anyone found guilty of coercion could face 14 years in jail. There’ll be a lot of us who’ll be speed reading to see if there are any surprises—and both opponents and enthusiasts will be searching for ammunition. Already there are questions over whether this should be called “assisted suicide” rather than “assisted dying”. Next, we will bring you reactions from some of the key players but, first, the bill itself—and I feel it’s worth quoting at length from Leadbeater’s press release.
“The bill would allow eligible adults to shorten their own deaths under a process which Kim Leadbeater says contains ‘the strictest protections and safeguards of any legislation anywhere in the world.’ It will remain illegal for a doctor or anybody else to end a person’s life.
Under the legislation:
- To be eligible, a person must be over 18, resident in England and Wales and registered with a GP for at least 12 months, and have the mental capacity to make a choice about the end of their life;
- The person must be terminally ill and expected to die within six months;
- They must, at every stage of the process, express a ‘clear, settled and informed’ wish, free from coercion or pressure;
- They must make two separate declarations of their wishes, which must be witnessed and signed, and can change their mind at any time;
- Two independent doctors must be satisfied that the person is eligible and must, if necessary, consult a specialist in their condition and receive an assessment from an expert in mental capacity;
- The application then goes before a High Court judge who must hear from at least one of the doctors and may hear from and question the person making the application and anybody else they consider appropriate;
- At least seven days must elapse between the two doctors making their assessments and a further 14 days after the judge has made a ruling, unless the person’s death is expected imminently.
Kim Leadbeater’s bill takes account of proposals considered and debated at length by Parliament in the past, as well the evidence collected by the Health and Social Care Select Committee in its 14-month long inquiry. It contains more rigorous protections than previous bills, defines more clearly the roles of doctors and specialists in assessing the person’s eligibility, and adds more robust processes for scrutiny by the High Court.
Both doctors must:
- Satisfy themselves that the person is eligible and has made their decision voluntarily and has not been coerced or pressured by any other person into making it;
- Ensure the person is making an informed choice, including being made aware of their other treatment options, including palliative and hospice care.
No doctor will be under any obligation to participate in any part of the process.
If all the above safeguards and protections are met and the person still wishes to proceed, the medication must be self-administered. Neither a doctor nor anyone else can administer the medication to the terminally-ill person. If they choose not to self-administer, the medication is immediately removed from their possession.
If the bill becomes law it will be illegal, punishable by a sentence of up to 14 years in jail, to:
- by dishonesty, coercion or pressure, induce another person to make a declaration, or not to cancel such a declaration;
- by dishonesty, coercion or pressure, induce another person to self-administer an approved substance.
The Chief Medical Officers in England and Wales and the Secretary of State will be required to monitor and report on the operation of the law. The Secretary of State must also report on:
- the availability, quality and distribution of appropriate health services to people with palliative care needs, including pain and symptom management, psychological support for those people and their families, and information about palliative care and how to access it.
Kim Leadbeater MP said:
‘On November 29th MPs will be deciding whether to allow my bill to go forward for further detailed scrutiny and amendment by both Houses of Parliament. It was my responsibility to put before them the best possible legislation and I believe I have done that.
‘It has been nearly a decade since the Commons last voted on the issue and it could easily be as long before they get another opportunity, so I was determined to get this right. I have consulted widely with medical and legal experts, the palliative care and hospice sectors, disability rights activists and faith leaders and have heard from many, many people with their own personal experience of why the current law is not fit for purpose. This has been a thorough and robust process.
‘MPs now have almost three weeks to look closely at this bill before the debate. I remain ready and willing to answer any questions they may have, because I don’t underestimate the seriousness of the issue. For my part, I have looked closely at the evidence from other jurisdictions and I believe this bill not only offers protections to people nearing the end of their lives that they don’t have at present, but also provides for the strictest safeguards anywhere in the world.’”
But some have got their retaliation in first.
There’s already been a fair deal of grumbling that with just 16 days left before the debate there’s not enough time for MPs to properly absorb the 40 pages of the bill.
According to Disability News Service, Paula Peters, a member of the national steering group of Disabled People Against Cuts, said last week that it was “absolutely reprehensible that Kim Leadbeater’s bill has not been published and no text is available”.
She said: “MPs have no idea what is in the bill. This is a shocking lack of democratic process.” The arguments of disabled campaigners against the bill are important and interesting and I hope to explore them more fully in the coming days. The Guardian has heard moaning from unnamed MPs about the delay in publishing. It is a real concern but there’s a whiff of tactics too…
Leadbeater decided to bring the issue to the floor of the House of Commons after coming top in the private members bill ballot. The Labour party is giving MPs a free vote, which means the government won’t take a position or try to whip MPs one way or another—that is standard for bills which deals with matters of conscience. One cabinet minister has added his voice to this debate about the debate. Number two in the Treasury Darren Jones has declared it is why he’ll vote against or abstain. He’s said private members’ bills “don't get anywhere near the same level of scrutiny and debate as the bills put forward by the government … [it is] “not the right way to try to introduce a change in a law on such a complex issue”.
Indeed, from memory, private members bills rarely become law unless adopted by the government.
The bill already faces significant opposition from some senior players. Probably the most important so far is Health Secretary Wes Streeting. He has said he’ll vote against, partly because the palliative care provided by the NHS wouldn’t be able to cope. He’s also said he is worried about “the risk of people being coerced into taking their own lives sooner than they would have liked, or feeling... guilt-tripped, feeling like a burden”.
Which is intriguing because back in 2015 he voted for a similar bill. I’d love to know more about why he changed his mind. Streeting is of course a committed Christian, a high church Anglican, and much of the opposition is from religious groups.
Her faith is also why another member of the cabinet, Justice Secretary Shabana Mahmood, is going to oppose the bill, according to the Times: “I voted against the bill when it was last introduced in 2015. I’ll be voting against it again. As a Muslim, I have an unshakeable belief in the sanctity and the value of human life. I don’t think that death is a service that the state should be offering.” We’ll be exploring in greater detail the objections from Muslims, Christians and other religious groups in more detail but you can read a fascinating, thoughtful view from the archbishop of Canterbury here in Prospect.
The Liberal Democrat leader Ed Davey, who has also given his party a free vote, says he’s “minded” to vote against. On his party’s website he describes himself as a “husband, father and carer”, adding, “Ed has been a carer for most of his life: first for his mum, who died of cancer when he was a teenager; then for his Nanna in her final years; and now he and his wife Emily care for their severely disabled son John.” He says his concerns are partly personal and argues it would create a “pressure cooker” on people who might consider themselves a burden. He says he will listen to the debate but it would take a lot to sway him—and more time is needed for a sensible debate.
The Conservatives are also likely to give their MP’s a free vote and their new leader, Kemi Badenoch’s attitude is more explicitly political than most MPs—not wanting the state to interfere, and not trusting it to deliver. “Personally I am sympathetic to assisted suicide but I know how government works, I have seen it from the inside, I do not trust any government or civil service to be able to deliver this,” she said. When the speed-reading is done, I’ll take a more leisurely amble through the proposed law and look out for reactions, positive and negative. Watch this space.
