Trying to make a damn bit of sense of the assisted dying debate

Everything you need to know about a profound change in the law

Photo by Andrew Johnson on Unsplash

This time next week MPs will vote on assisted dying. We haven't the slightest idea how it'll go. It's a free vote, so they can do what they like, without the whips to boss them around. People are breaking in directions we did not expect, leading to unholy alliances of left and right. Plenty of undecided figures could go either way. It's all rather chaotic.

What we can do is assess the areas of dispute and get a sense of what's true. That's what this piece is: a guide to the debate and how you might come to your own conclusion.

So that you know my priors, I instinctively support assisted dying. I'm a dog owner. Dog owners have quite a lot of time to think about death. We know our pet is not going to outlive us. We plan for how best to manage that fact. We commit ourselves to the idea that they will never, ever suffer. And once you consider this a few times it's only a matter of time before you think: Why can't humans have that too?

But this is not an opinion piece. Where the evidence contradicts my priors - which it does several times - I've included it. I'm not going to bullshit you. 

I've spoken about this with a few different people recently and noticed that several of them started to well up as they do so. We're all reliving loss when we discuss it. We're all thinking of those we know who've died, and how they died. It's not the sort of issue we should approach through dogma, or with too much fire in our soul. It should be done calmly and generously and with the steady conviction that you might be wrong.

What's the parliamentary process been like?

It's been an absolute godforsaken shitshow. Opponents of reform are livid about this and they are right to be.

This issue was screaming out for a grown-up process. It's profound. It is not subject our usual tribal divisions. It involves a complex tapestry of evidence and moral judgement. The best thing to do would be to hold a royal commission, or perhaps a citizens assembly - a forum where we could properly assess the issue. 

That did not happen. Labour MP Kim Leadbeater's private members bill laying out a system of assisted dying is very well drafted, but it wasn't even published until a couple weeks ago. We had months of debate over this without even being able to actually see the legislation we were discussing. It's been utterly haphazard and slapdash. That's par for the course in British lawmaking of course, but it would have been nice if we could have done it sensibly just this once.

That being said, Leadbeater's bill is extremely cautious. It is clearly the product of someone trying to assuage the concerns of her critics.

It works like this: Only adults with a terminal illness who are expected to die within six months will be eligible. They will make two separate declarations of their wishes, which must be signed and witnessed. Two independent doctors must be satisfied they are eligible. The application must then be heard by a high court judge. The assisted death cannot take place for another 14 days after that decision. The medication must be administered by the patient, not a doctor. It will be illegal to coerce or pressure someone to choose assisted death, with a maximum prison sentence of 14 years if convicted.

Photo by Mulyadi on Unsplash

What are the downsides?

The obvious downside is that people can be pressured into dying, or might pressure themselves into it. 

The bill bans coercion, but what if it's more subtle and unspoken than that? Labour MP Diane Abbott and Conservative MP Edward Leigh offered an example yesterday: "Imagine the pensioner whose children cannot afford houses of their own watching her limited savings, earmarked for those children, disappearing on social care and so feeling a 'duty to die'." This is a really compelling illustration, I think - a particularly British silence, a desire not to make a fuss, a growing barely-spoken societal conviction that it's selfish not to pull the plug on yourself. 

There's some scattered evidence of it internationally. In Canada, where assisted dying is legal, 35% of people choosing it cited "perceived burden on family, friends and caregivers" as a reason for their suffering. As Professor Samia Hurst-Majno, a bioethicist in Geneva, stated: "Pressure to go into assisted suicide can exist. It is all the more concerning that these pressures are not necessarily intentional. They are not necessarily explicit." Leadbeater's safeguards are not enough to prevent this happening, precisely because it's unspoken. 

There are also downsides to the status quo. It is not without consequence just because it's already happening.

For a start, banning reform does not prevent suicide, it simply makes it more perilous, painful and lonely. Office for National Statistics (ONS) data shows that people suffering from cancers with a low-survival rate or from severe lung disease are 2.4 times more likely to die by suicide than members of a control group. 

Others choose to die by travelling to Dignitas in Switzerland. But this is itself a fraught experience, particularly for the family members who return home afterwards. 

Prosecutions are relatively rare. Between 2009 and 2024, just 187 cases of assisted suicide were referred to the Crown Prosecution Service (CPS) by the police. Most of these were withdrawn, leaving just four to be successfully prosecuted. 

But just because there are very few convictions does not mean there is no suffering. Prosecutors are required to assess the evidence of whether a crime has been committed before they decide if there's a public interest in prosecuting. That entails a slow and anxious legal process. One person, who travelled to Dignitas with their sister to help their mother die, described it in harrowing terms: 

"I was interviewed under caution by the police for two hours and then investigated for two years. That was only resolved when the CPS finally said that they were not going to proceed with a prosecution.. But, in the meantime, they had looked at my bank account, they had taken witness statements from people that we loved... My reputation, I felt, was in serious jeopardy. It drove my sister almost to the brink of suicide… It cost us thousands and thousands of pounds in legal fees to defend ourselves."

Then there is the pain and suffering of a natural death. There is a limit to our ability to treat pain. A 2019 report by the Office of Health Economics found that 21% of palliative care patients dying in hospitals had unrelieved pain. Its modelling concluded that even if we achieved the perfect level of palliative care, 50,709 palliative care patients a year would still die in some level of pain. 

But in most cases, the suffering is not about pain. It is about dignity. It's about an illness slowly stripping you of who you are and removing your sense of agency. As Dr Clare Fellingham from the East Metropolitan Health Service in Western Australia said: "Time and again it is existential distress: a loss of the sense of self, dignity, autonomy, meaning, or purpose in life, that causes a kind of hopelessness particularly resistant to palliative interventions."

Is this the start of a slippery slope?

Most critics of reform warn about a 'slippery slope'. But we need to specify what kind of slipperiness we're talking about and what manner of slope we're travelling down.

Internationally, there are two basic kinds of assisted dying laws. Some countries only allow it for incurable illness. That's the model Leadbeater is following. Other countries also allow it for intolerable suffering. 

This is an incredibly important distinction. Incurable illness is an objective test. We might quibble over whether a particular case really is incurable, but we all agree on what that term means and we can construct sturdy legal definitions. Intolerable suffering is a subjective test. It means different things to different people.

You can therefore see the outline of the slippery slope. First you pass a law, like the one Leadbeater is proposing, which allows assisted dying only for people with incurable illness. Then you expand it to include people experiencing intolerable suffering. And then you expand the definition of intolerable suffering, until it is really quite broad. That expansion could happen through parliament passing a new law, or by a court ruling that your previous criteria is discriminatory. 

This is what happened in Canada. 

In 2015, the Canadian Supreme Court ruled that the prohibition on medical assistance in dying was incompatible with the Canadian Charter of Rights and Freedoms. In response, the government introduced legal changes to allow assisted dying, but only for those whose death was "reasonably foreseeable". A few years later there was another court case and assisted dying was made available to those who suffered from a "grievous and irremediable medical condition". It made the species jump from category one to category two. And then it continued to expand. The government formulated plans to extend the eligibility criteria to those with a mental illness. It was originally planned for March 2023, was then postponed until March 2024, and has now been postponed a third time to 2027. 

There's a reason critics of assisted dying always talk about Canada. It's because it has followed a rather strange and alarming trajectory, led by judicial rulings rather than parliamentary decision-making. The number of people opting for assisted dying in Canada is steadily increasing. It accounted for two per cent of all deaths in 2019. By 2022, it accounted for 4.1% of all deaths. 

Professor Trudo Lemmens supported the initial law. He has now become disturbed at what has taken place. "We have a system that started off in response to the typical more exceptional cases of suffering, where there was a perceived need to allow euthanasia and assisted suicide in the case of a person with a degenerative disease approaching their natural death," he said. "For various reasons it has rapidly expanded… to, I would say, the most open-ended system in the world."

So how likely is a legal challenge? Some people think it's extremely likely. Almost 50 leading law professors and practitioners wrote to the Observer saying this is precisely what would take place. "However well-intentioned the movers of the bill," the letter read, "we believe the UK would, sooner or later, follow other jurisdictions down the slippery slope." Legal expert Philip Murray has argued here and here that the restriction against cases of suffering could be challenged under the Article 14 prohibition on discrimination in the European Convention of Human Rights (ECHR), to which we're a signatory.

As Murray accepts, however, the Strasbourg court has never previously required a member of the convention to expand its assisted dying regime beyond its initial limits. It repeatedly ruled such challenges inadmissible. It has said several times that there is no right to die under the ECHR. In a ruling this year, it said that states have wide discretion on these issues, given how sensitive they are. Barrister and former parliamentary lawyer Alexander Horne has argued that a legal expansion is unlikely. 

The Canadian example is actually quite unusual. Many countries do not expand provision. Oregon was the first US state to permit assisted dying in 1997. It was only available for those who had been diagnosed with a terminal illness that would lead to death within six months - basically the model Leadbeater is using. That remains the rule, although it's been expanded to include those travelling in from other states. Australia has also passed assisted dying legislation, with provisions very similar to Oregon, at the state level. It remains the rule there too. Where countries introduce these conservative measures, they tend to keep them.

As Kyam Maher, attorney general for the government of South Australia, said: "Personally, I do not think we are going to see much change one way or another any time soon. The argument often raised by those concerned about the introduction of the model is that it is a slippery slope or the thin end of a wedge, or that there will be creep in how it may operate, but there is absolutely no evidence of that in Australia."

While we're on the subject, it's really striking how quickly all the controversy in Australia about assisted dying simply stopped once they had a law in place. I mentioned the arguments currently being used against assisted dying to ABC Late Night Live host David Marr when I was doing my regular segment on Tuesday. He replied: "Those arguments you were reciting a moment ago - I've heard them all. They were all used in Australia. They've all just disappeared now."

However, we do need to make one thing clear. No matter what the criteria, no matter where the jurisdiction, the number of people requesting assisted dying always seems to creep up.

In Switzerland, 965 residents chose assisted dying in 2015. In 2021 it was 1,391. In the Netherlands, 7,666 people chose assisted dying in 2021. In 2022, it was 8,720. Oregan, which has the longest track record, experienced the same, as the graph below demonstrates.

The numbers probably reflect societal change under a new regulatory regime. When assisted dying first becomes available it seems strange and exotic. Then it becomes a choice that ordinary people make and therefore more popular. As professor David Albert Jones from the Anscombe Bioethics Centre in Oxford said: "The increases do not themselves demonstrate that the practice is malign but they show that the practice cannot be limited to a small number of people. Over time it will be 'normalised'."

Does poor palliative care mean we should reject assisted dying?

Photo by Bret Kavanaugh on Unsplash

Many Labour MPs have been influenced by health secretary Wes Streeting's opposition to assisted dying on the basis that palliative care is in a terrible state. As he put it, the system is not "where it needs to be to give people a real choice".

British palliative care is some of the best in the world, but Streeting is right that there are problems. Dr Matthew Doré from the Association of Palliative Medicine says it is "struggling". There is more demand than there is capacity. We have patchy provision, with some areas getting excellent service and some very poor. Opponents of reform often warn that assisted dying could lead to a deterioration, deprioritising spending on palliative care and tacitly encouraging people to choose death instead. A grim prognosis.

Streeting would certainly win support from palliative care professionals. General medical professionals are split on assisted dying - groups like the British Medical Association and the Royal College of General Practitioners break roughly down the middle. But data put out by the Association of Palliative Medicine found that 82% of its members oppose a change in the law. The vast majority are opposed to assisted dying, which is something we should probably pay attention to given they're experts in the matter. 

But the idea that assisted dying would lead to a decline in palliative care is unconvincing. There is no evidence for it. Instead, there is extensive evidence that assisted dying leads to an improvement in palliative care. When the health select committee looked at regimes around the world, it could not find a single instance of falls in quality after the introduction of assisted dying. In fact, it found the opposite. 

Academics studying Belgium, the Netherlands and Luxembourg concluded: "The hypothesis that legal regulation of physician-assisted dying slows development of PC [Palliative Care] is not supported... On the contrary, regulation appears to have promoted the expansion of PC." 

International research commissioned by Palliative Care Australia found "no evidence to suggest that the palliative care sectors were adversely impacted by the introduction of the legislation. If anything, in jurisdictions where assisted dying is available, the palliative care sector has further advanced". 

Professor James Downar, head of the Palliative Care at the University of Ottawa in Canada, said: "Since legalising Maid [Medical Aid in Dying], the use of palliative care has risen by almost ten per cent across the board of the population, which is almost certainly the fastest rate of growth of palliative care in Canadian history." 

There is also a strange, telling wrinkle to all this, which is really quite profound. Look back at that Oregon chart about how many people pursue assisted dying. Notice the gap between those who receive the drug and the ones who actually take it. Only 66% of people who secured the prescription since 1997 died by ingesting the medication. We see a similar pattern in Australia. 

There are lots of people who get the drug and have it there as an insurance policy, something they can take if it all gets too much. And then eventually, as it happens, they do not take it. This is, in itself, a form of palliative care. It gives them a sense of authorship over their life. It gives them autonomy, which contributes to their dignity and well being. Medical review boards in Australia have stated that there may be beneficial impacts from people receiving the drug even when they do not use it. 

As Kyan Maher from the Government of South Australia said: "They have some control over their own life, knowing that there is something they can use. That helps with their mental health, which in and of itself has a palliative effect, improving their end-of-life living standards."

You can break either way on this. I think it's pretty obvious I would support assisted dying. That was my view going into this and it's my view now. The consequences of the status quo are, to my mind, very severe and are understated simply because they're already happening. I like to be in control. I know I would feel better being in control of my death than having some nasty little disease do it. And I am struck by the absence of controversy in Australia, which is pursuing a similar system to the one proposed here. 

But the objections are valid. And more than that, they're compelling. The fear of silent pressure on the old feels highly intuitive. There has been expansion of applicability in Canada, even if overall it seems unlikely that would happen here. And it is striking that palliative care professionals are so sceptical. More than any other group, you'd want to pay attention to them.

I spoke about this with a friend the other day, and they mentioned how much they would have missed the final days with their mother if they had opted for assisted dying. Bear in mind, when this debate takes place, that this is the kind of thing many people will be thinking about. 

They may have made a mess of the parliamentary process, but we can all at least discuss it with kindness, understanding and empathy.