Parliamentarians Are Being Radically Unsupported

Sienna Rodgers writes:

If anyone grasps the depth of the ethical and practical complexities involved in assisted dying, it’s Alex Ruck Keene KC (Hon). As a barrister who was in the team representing motor neurone disease sufferer Noel Conway in a landmark case that reached the Supreme Court, he spent years arguing for a change to the law. But MPs will soon vote on legislation to lift the ban on assisted suicide – and Ruck Keene is deeply concerned.

There has been plenty of focus on principle and not enough on making good law in the debate so far, Ruck Keene believes. While the Second Reading of Labour MP Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill on 29 November is fast approaching, the text has not been published at the time of writing.

A barrister at 39 Essex Chambers and a visiting professor at King’s College London who specialises in mental capacity, Ruck Keene worked for several years on the Conway case, which he describes as the last serious, substantial legal challenge to the ban on assisted suicide. The battle was ultimately lost in 2018 and Conway, who was terminally ill, died three years later aged 71 after deciding to remove his ventilator.

It was while fighting the case, which he describes as “extremely hard” and a “very intense” experience, that Ruck Keene developed a growing list of questions about the reform of UK law on assisted dying.

“I never had the slightest doubt that Mr Conway had unimpaired mental capacity and was not under the slightest shadow of coercion. He knew exactly what he wanted. But the thing which increasingly troubled me, and has increasingly troubled me since, is it’s not about an individual,” Ruck Keene tells The House.

“That’s the thing I think is very difficult in this space to think about. Because you have individual stories which are very, very powerful, and we’ve got lots of other individual stories out there in the public domain at the moment. But the law can’t operate for individuals. The law has to operate for everybody.”

The Conway case was unusual. Most judicial reviews are about decision-making by a public body, rather than primarily about evidence, but Conway had to respond to a previous Supreme Court decision that made clear it could not look at assisted dying as a pure matter of principle. To consider whether the current ban was proportionate, the courts needed something to test.

The Conway team thus put forward a framework whereby the person seeking an assisted suicide would be: over 18; terminally ill; with six months or fewer to live and unimpaired mental capacity; and under neither coercion nor duress. There would also need to be written request for assistance, and both an independent doctor and a High Court judge would be involved.

Why did Ruck Keene start to have questions? Throughout the case, he was also the legal adviser to the Mental Health Act review. “I had increasing cognitive dissonance,” he explains. He was at once considering how the state should stop people from taking their own lives when they are in mental distress, and also fighting to win the argument that the state’s duty to secure life is not relevant for certain people in certain situations.

But also, crucially, more and more details were asked of the framework proposed by the Conway team. “Mr Conway, in order to make his case, never had to fully work up things like: Who’s going to pay for the judges? Who’s going to actually think about regulating the medicines?” Ruck Keene recalls. “The more you get into it, and the more you’re really advancing arguments of saying these are safeguards, the more you had judges hearing the case saying, ‘I need to know more, I need to know more’.”

It is noteworthy that the Conway framework is very similar to the model proposed in legislation such as Lord Falconer’s Assisted Dying for Terminally Ill Adults Bill, which recently started in the Lords. This is “not really a coincidence”, Ruck Keene acknowledges, because Conway’s case was supported by the campaign group Dignity in Dying, which has long advocated these particular criteria.

One question Ruck Keene has concerns the requirement that the person “has capacity to make the decision to end their own life” (as specified in Falconer’s bill). The idea that capacity is straightforward is “hopelessly naïve”, he says.

For example, the UN Committee on the Rights of Persons with Disabilities believes the very concept of mental capacity is invalid because all it does is display professional biases.

“The fact we’ve actually got the major UN disability rights body saying ‘the entire foundation of our system is incorrect’ is a challenge. I’m not saying the concept of capacity is invalid, and I’m not saying it’s something that people cannot work through, but I do think Parliament has to be aware that working it through is not immediately straightforward.”

Under the Mental Capacity Act 2005, there is a presumption of capacity. This is important, Ruck Keene stresses, because daily tasks would otherwise become impossible: “Banks would collapse, because every time you went in to get cash out from a bank teller, they would go, ‘I can’t do that because I’d need to assess your capacity’.”

But should a presumption of capacity be applied in the case of assisted suicide, where the stakes are much higher? “A doctor investigating goes, ‘I’ve got lurking doubts, but I can’t get to the bottom of it’. The presumption of capacity would mean you’ve got to assume this person’s got capacity.”

Another detailed question is around the principle of support in the 2005 Mental Capacity Act. “There’s a very, very strong principle of support, which is, ‘I can’t find you to lack capacity to take a decision unless I’ve taken all practicable steps to support you’. That’s because the Mental Capacity Act has got a framework in place which says if you can’t take the decision, I’m going to take it for you.

“But there’s no suggestion in any of the assisted dying models which have ever been put forward in England and Wales that we’re going to have doctors choosing to take people’s lives on a best interest basis,” Ruck Keene explains.

“It might be quite challenging to think a doctor is working with, say, someone with learning disability. Should that doctor be supporting that person with learning disability to make the decision to seek assistance with dying?

“I am not going to argue one way or another. What I am going to say is, that is the sort of detail which people might go, ‘In an assisted dying bill which refers to capacity, see the Mental Capacity Act – that’s just a detail.’ But it’s a detail that has massive consequences.”

A more common argument against passing legislation to lift the ban on assisted dying with Falconer-like criteria in place is the slippery slope. Around the world, states that have legalised assisted suicide are extending eligibility beyond the original parameters.

In Oregon, academics have found that patients receiving physician-assisted suicide have included those with illnesses such as arthritis and anorexia. In Canada, a planned expansion of its medical assistance in dying programme (Maid) will see people with chronic mental illness included. In the Netherlands, this has already happened: in 2023, there were 138 cases of assisted dying for people with psychiatric illnesses (1.5 per cent of the 9,068 euthanasia deaths).

Leadbeater has said her bill will only apply to the terminally ill. Allies point out that British parliamentary sovereignty means the courts cannot force an expansion of eligibility – it would be up to Parliament. “Our parliamentary constitution would not allow for such gradualism,” former barrister and now Labour MP Jake Richards has said. But Ruck Keene issues a warning nonetheless. “One of the things that the courts are most concerned about, and have been very concerned about, is deciding on the issue of principle as to whether assisted dying should be made legal. Because they recognise this is such an important point of principle about which there are such strong opinions. It’s just illegitimate, at some fundamental level, for a court to decide.

“But the second Parliament has said it is available for one group of people, we are now in a zone where it’s not, ‘it shouldn’t be legal’, but it’s, ‘who should it be available to?’. And I don’t mean to be alarmist, it’s just it’s so clear that’s the point where you start thinking about discrimination.”

He continues: “It would be very easy to imagine a body like Humanists UK saying it is discriminatory that it is only available to this group. That’s the point at which the lawyers will be kept in business for years, because even if they fail before the courts of the United Kingdom, they then can take the case to the European Court of Human Rights.”

Ruck Keene compares it to social security: the ECHR has been clear that states are not compelled to have a social security system, but if they do have one, they must ensure it operates in a non-discriminatory way.

Some argue that post-legislative expansion of assisted suicide is inevitable. Under the European Convention on Human Rights, they say it would be very difficult to justify giving assisted dying access to the terminally ill without also offering it to those who are not terminally ill but are suffering intolerably. Is their argument correct on the law?

“At the end of the day, this is about autonomy, and it’s about how highly you value autonomy,” Ruck Keene replies. “If Parliament passes a law limited to those with terminal illness, it gets very, very difficult at that point to see why it is anything other than discriminatory to say we value autonomy for some people but not for others.”

Neither the European Court nor our own courts can require Parliament to change the law. And yet, crucially, Ruck Keene makes the point that if they concluded any law passed was discriminatory, Parliament could not simply ignore that.

So, as Leadbeater’s Second Reading approaches, Ruck Keene is worried that not enough thought seems to have gone into the small details that could have huge implications for the implementation of the bill.

“The fact that this is coming through as a Private Members’ Bill, and there is no governmental initiative here, means there simply isn’t the material being generated to support parliamentarians to make a decision.

“By contrast with Jersey, where it is a governmental initiative, albeit following an in-principle choice which was taken, the governmental initiative there runs to nearly 300 pages of explanation. Including thinking through things like the presumption of capacity.

“I am immensely troubled, I have to say this. I think parliamentarians are being radically unsupported by the way in which the process is operating. Which is not a criticism of Kim Leadbeater,” Ruck Keene emphasises.

“I’ve been inordinately struck by talking to parliamentarians – especially new parliamentarians – who are incredibly conscientiously and thoughtfully trying to grapple with this. They’re trying to grapple with it, being bombarded with messages from people from all different sides, and there is no central body of material setting out, ‘by the way, this is what it might look like, this is what the impact might be, be aware of all these sorts of things’.”

The barrister has plenty of other questions. If the aim of a change in law is genuinely to provide assistance, who will it be provided by? The NHS? And if people must apply to court to confirm their decision to seek assistance in death, what is the court’s role? Merely looking at paperwork, or hearing from the patient, even having someone appointed to test the evidence? Who would pay for that?

“What I really have been trying to do, and I will keep trying to do, is enable parliamentarians to be as informed as possible, so that they know what they do when they make that choice,” says Ruck Keene.

But his many questions have not yet been answered by those proposing legislation, nor by the government that is making parliamentary time for it because of a promise Keir Starmer gave earlier this year to campaigner Esther Rantzen.

If that remains the case, Ruck Keene warns: “It will keep people like me, lawyers, in business for years. That is not what you want. We need to work out the answers to these questions before rather than later.”