It was a surprise and a delight to be asked to write this blog, and I hope my first piece, back at the beginning of November, reflected that. In it, I said that as far as the debate about assisted dying was concerned, I knew where I was coming from; I didn’t know where I was going to. Even apart from the irony of that statement, coming from someone with a neurodegenerative disease, that has been even more true than I thought. My views not only on the debate but on journalism itself have evolved through what has at times felt like total immersion in the subject.
Before I go on about me, what about you? What experiences and views colour your perspective on the debate, and have they shifted or evolved over time? You can tell us here.
I began by doing something unique in my long journalistic career, and fairly unusual in general. It was a statement of my feelings and thoughts about the subject I was about to cover in depth. If you want, it was a declaration of my bias, a subjective precursor to my attempt to be objective.
In brief, I said that I had long been in favour of people being able to choose to die with medical help if life became unbearable. I added that I hadn’t, however, given it much thought. But when Lord Falconer came on our podcast, Movers and Shakers, in October, I told him his bill didn’t go far enough, and I hoped it would indeed become the slippery slope so feared by opponents.
He eventually dropped his bill in favour of backing Kim Leadbeater’s one, which was very similar but had a better chance of success because it began in the Commons not the Lords. My feelings were that it suffered from the same flaws and wasn’t radical enough. As a person who has Parkinson’s, I felt the requirement of a six-month terminal diagnosis robbed any of us of the possibility of dying with dignity: the mantra we had come to know well was that you die “with” not “of” Parkinson’s. My starting point was that the “terminally ill” condition should be replaced by “intolerable suffering” or some similar phrase.
I had an even more profound worry: I love life and the only reason I would want to die would be because of that “intolerable suffering”—but wouldn’t that, in all likelihood, mean I was in a state where I couldn’t consent? That made me feel that some sort of “forward directive” should also be part of any bill.
More generally, I felt little sympathy for those arguing against assisted dying, thinking that their concerns about coercion and the vulnerable were both overblown and very largely a cover for religious objections.
This is where covering the debate has had the biggest impact on my view. Not the religion bit—I feel just as strongly that faith and the law are an unhappy mix. I have no problem with believers arguing life is God’s to give and take away. I just don’t think the predilections of a supreme being I regard as no more real than Father Christmas or the Tooth Fairy should count for much. I feel a degree of outrage if people do not make their fundamental, unshakable faith-based opposition clear when they are arguing a more quotidian case.
No, the first thing that really shook me was the hostility to this bill or indeed to any such legal change being expressed by many disability campaigners. One of them, Phil Friend, who is 79 and has been in a wheelchair since his 20s, told me: “I think when you’re living in the abject poverty that many disabled people are in, coercion is often almost institutionalised. It's not your daughter telling you to kill yourself; it’s just that, looking around, you can see no alternative to any kind of life.”
Some campaigners go much further and fear a Nazi-style eugenics programme—where disabled people are coerced into killing themselves so as not to be a burden on society. Now, frankly, that strikes me as absurd and slightly hysterical. But Phil, who represents campaign group Not Dead Yet, argued this could happen by default. “Although we don't necessarily align with the idea of eugenics, we do see this basic societal view that disabled people are suffering, that our lives would be better if we just... died.”
So the argument is that life for some disabled people is so grim, and society so uncaring, that if the bill becomes law they will feel pressure to kill themselves. I recognise I have been talking to very well-versed campaigners, who almost by definition feel they currently get a raw deal, and that to a certain extent their position feeds into a much broader argument about resources and priorities.
Nevertheless, it is a genuine, deeply held fear, not based—in the case of any of those I spoke to—on a belief system, but simply on instinct and analysis.
This really shook me and left me with the strong belief that the bill must make it clear this can’t and won’t happen, to reassure people and quell their fears. In other words, to make sure that I’m right that it won’t happen, and that they can’t be right. As yet I have no idea what sort of changes that would require.
The next deep dive which changed my mind was into Canada. This country has always been cited by those opposed to assisted dying as the prime example of the slippery slope. It is certainly true that, over time, its laws have become much more liberal, replacing the original criteria of “foreseeable death” with “enduring and intolerable suffering”. That’s fine by me and what I think the law should be. Not only that, but the detail convinced me that it couldn’t happen here.
Canada’s slippery slope—if you regard it as such, rather than a primrose path—exists because it has a constitution and because of judicial activism, neither of which apply to the UK. In addition, I’d argue, the way Leadbeater has cleverly drafted her bill would make such mission-creep impossible.
So that wasn’t what rang alarm bells. It was some doctors’ comments about Quebec’s new legislation permitting advanced directives. That means a declaration made when first diagnosed with a condition like dementia that you want to die if you get worse in certain, self-defined ways.
I support the idea, while feeling advanced directives are inherently awkward—beset with huge practical problems and difficulties. They raise lots of unresolved questions in my mind. How do you make a declaration, years in advance, perhaps when you’re healthy, that you want to die if certain conditions are met? How can you be sure your future self would agree with your present self? How do you know how you’ll feel? For example, you might specify that if you no longer recognised your children, you’d want to die. To be unable to know the people you love most in the world is horrific. But what if, in such a state, you didn’t feel the horror? What if you were living in some sort of woozy, happy half-life? Would it be right, then, for your past self to dictate your death?
These were questions I already had and hadn’t yet resolved. They’ve stuck with me, and I know I’ll grapple with them further in the future. But what shocked me was hearing about the declaration by certain doctors that they would feel obliged to carry out the directive, even if the patient appeared resistant or seemed to have changed their mind.
A report from AFP quotes one senior geriatrician, Dr David Lussier, as saying: “what will be the most difficult will be to administer medical assistance in dying to someone who is not aware of it and who will not remember having asked for it”. Dr Lussier continued that if the patient makes a “gesture of refusal”, the doctor must cancel the procedure. But if a patient “resists, and it is part of their illness, we can still give it”.
Two caveats are essential here. First, Dr Lussier, who supports assisted dying in principle, made it clear this was the reason he wouldn’t participate in the new programme. Second, the Quebec law explicitly states that any indication from the patient that they don’t want to die must override any prior directive. Nevertheless, the very idea that a doctor could think other medics might kill a protesting patient is chilling and makes me very, very concerned about the practical details.
Researching the situation in American and Australian states also had an impact—but in this case, it calmed my fears rather than exacerbating them. My assumption that laws with similar criteria as Leadbeater’s bill, demanding a time limit and a terminal diagnosis, would exclude people like me with Parkinson’s is simply wrong.
Every jurisdiction I examined had records noting the underlying condition prompting someone’s wish to die. In every single state I looked at there was a small proportion of people either listed as having Parkinson’s, or under a broader category such as neurological conditions which explicitly included Parkinson’s.
This doesn’t make sense to me based on what we know about Parkinson’s. My understanding hasn’t changed, and neither has that of a good friend and neurologist I consulted. They agreed that while you could argue someone might die of Parkinson’s within a short period—say, a couple of weeks—you couldn’t reasonably make that case six months out. They took a straw poll at a neurologists’ conference they were at and most agreed it would be very hard to do so.
Nevertheless, the data is there in black and white. This suggests either that doctors are being more liberal than the laws intend, or that our understanding of how Parkinson’s is classified or treated within these frameworks is incorrect. Either way, it indicates that if the UK’s assisted dying bill resembles these laws in American and Australian states, then it could indeed be used by people with Parkinson’s. Which I suppose brings us back to our old friend, the slippery slope.
The next thing that began to change my mind was the debate itself.
By the time it came to the crucial debate in the House of Commons, I was pretty familiar with most of the arguments. I don’t think I heard anything new, although I thought the debate was both dignified and sincere. As the cliché goes, it was the House of Commons at its best. But there’s nothing like listening to an entire debate to measure the temperature of politics, politicians and public opinion.
This, too, changed my mind—not in any profound or philosophical way, but simply pragmatically. MP after MP stood up to express their concerns that the bill left the vulnerable too exposed to coercion. Clearly some were against the bill on principle, but equally many said they were seeking reassurance. It became obvious to me that if the bill hadn’t been as tightly drawn, it wouldn’t have stood a chance.
This brought home to me just how well Kim Leadbeater understood her fellow MPs and their worries. She had drafted the bill with great care. The very title made her intentions crystal clear: The “Terminally Ill Adults (End of Life) Bill” cleverly hints this is about dying just days or weeks earlier than would otherwise be the case, not about a general right to die with medical help, which opponents could label a suicidal free-for-all.
Pragmatically, I concluded that if anyone wanted the bill to pass—and I do—then they had to accept the tight restrictions built into it. These restrictions were necessary to secure the vote in the Commons and would likely become even tighter in committee.
I may be wrong—that’s the whole point of this exercise—but I think it’s unlikely that any liberalisation or loosening of the bill will occur in committee. If anything, there will be further changes in the opposite direction. Reluctantly—painfully reluctantly—I accept this as necessary to get the bill through.
Following the debate, dozens of people—including many MPs—decided that the logical way forward was to increase spending and focus on palliative care (end-of-life care, in other words), either as an alternative to assisted dying or as a complementary strategy.
Two powerful interviews shaped my thoughts on the matter. The first was with Natasha Wiggins, a palliative care expert and doctor. She told me, “I get asked regularly to kill people. Patients ask me all the time: ‘Please, can you kill me?’ 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.” She had seen thousands of deaths and the vast majority “are quiet, they are peaceful, they are dignified”. She worried that some MPs suggested that “death from a terminal illness was... a screaming, drowning, horrific act. For most people, it’s not.”
I found this rather reassuring.
But the next interview was with the man who supplied MPs with those horror stories. Professor Sam Ahmedzai argued that some deaths were disgusting and horrible, and this possibility meant assisted dying had to be available. What struck me most was his questioning of the whole premise of hospice-based palliative care, which he said had “a conservative ethos, emphasising simplicity and maintaining established practices rather than embracing transformative progress”. Giving it more money would entrench its conservatism.
These two starkly opposing interviews left me feeling a little like a cushion that bears the impression of the last person to sit on it. But Prof Ahmedzai’s questioning of the conventional piety around palliative care will ensure I interrogate the received wisdom more in the future.
What’s the point of saying all this? Certainly, it’s not the first time—by any means—that covering a debate or subject in detail has changed my mind. Indeed, that seems to be a constant of journalism.
Both as Europe correspondent and North America editor at the BBC, I found I was never really secure in my beliefs. I would do some research or talk to people and think, “finally, I’ve understood this in a way I never did before. I now have a sophisticated understanding of it—standing on firm ground where previously it was shaky.” But then, after a few months, weeks, or even days, you’d discover that this ground was paper-thin. You’d crash through to the need for yet another level of understanding. And when you reached that new level, you’d crash through again.
So, I never quite reached an established view or felt I had anything like a comprehensive grasp of a subject, particularly one that’s constantly evolving. This is especially true in Europe, where you could do a deep dive into one country—or the 30 or so in my orbit—only to return months or years later to find everything had changed.
What I’m arguing is that explicitly stating one’s views, as I am here, gives an entirely different experience from simply learning more about your specialist subject. I recognise this isn’t exactly new and that I am advocating a variation of a way of thinking first proposed in Ancient Greece, the Socratic Method. In my mirror image variation, the material, the articles, interviews and debates are the teacher and the writer is the student.
And I think this has wider applications beyond this debate. The virtue of explicitly testing a thesis—hurling your ideas against reality, finding out whether they hold water or are nonsense, is celebrated in many fields. It is done rarely, though, in journalism, although there is a real strength in seeing whether one’s assumptions are pure prejudice or stand up to facts and arguments.
Enough pontificating about my craft — how have my views changed?
The main impact of observing the debate so far has been to convince me that while I still feel changing the bill to replace “terminal illness” with “intolerable suffering” is desirable, it isn’t practically possible. The bill simply won’t get the support of the majority in the House of Commons, or even on the committee, unless it is even more tightly worded—particularly around the issue of protecting the vulnerable and guarding against coercion.
This is somewhat galling because I think, in a sane society, it would be possible to have a more rational, more widely drawn bill. But as tight as this bill already is—including the title, which explicitly only allows terminally ill people an earlier death—it still isn’t enough for some MPs.
I know some groups that support the principle of assisted dying share my concerns that there may not be enough MPs on the committee or in the House to justify putting forward any liberalising amendments that would be easily defeated.
The committee stage will be a good opportunity to look at why MPs are so worried about a more liberal bill. At the moment, I’m working on the assumption that this concern stems from a genuine sense of responsibility plus an awareness of the political risks involved in legislating on such sensitive issues.
It reflects a political instinct to tread carefully, wary of what could, however remotely, turn into a shaming disaster. There are also practical areas where work is clearly needed—for instance, on how overstretched judges could be expected to handle such cases and how doctors and others could be trained to spot coercion effectively.
Another central concern will, rightly, be the “death within six months” criteria. MPs may not be swayed on the need for a tight timetable—however, they must consider whether it is possible for doctors to be so definitive.
I can accept all this with greater grace than I would have before, largely because of the evidence from Australia and the United States, where neurological conditions such as Parkinson’s are embraced.
The evidence from Canada suggests to me that it’s not a good model. It never was. Which is why Leadbeater based her bill on Oregon—and why while I will be covering in detail the continued debate over there. Opponents here focusing obsessively on Canada’s Maid (medical assistance in dying) law can expect short shrift from me.
Quebec’s experience exacerbates my concerns about the practicality of any form of living will or future declaration about assisted dying. My views remain very clear on the principle, while being even hazier on the practice.
I’m also very concerned about disabled people who feel they would be made vulnerable by the bill. While I don’t think it would be possible to convince the majority of their campaigning organisations or campaigners that this isn’t the case, I believe the bill must explicitly go the extra mile to reassure them.
What that means in terms of how the law should change remains unclear to me, but will be central to the committee stage. I think it is very likely the UK will have new laws on assisted dying in place by the summer, and after a difficult process that will be that. The only way to bring in the sort of changes I’d like would be through another act of parliament—and there’ll be no enthusiasm for that for a decade or so, if ever.
As for the broader topic, “what constitutes a good death?” I don’t think I’m much closer to an answer than I was before, except for the fact that I’m now willing to think about it. Contemplating the extinction of the self is hard, but perhaps you can help me with both the details and the broader philosophy.
What are your stories? What are your experiences? How have they shed light on these issues? And can you recommend any art, books, poetry, or prose that might help us navigate this deeply intriguing, divisive and profoundly important debate? Tell us here.
