Article

Assisted dying

Death & life

14 November 2023

4 min read

Behind the data: the social messages physician assisted suicide sends to the autistic

If intense suffering caused by society drives autistic people to seek assisted death, then society has failed.

Henna Cundill

Henna is a researcher with the Centre for Autism and Theology at the University of Aberdeen.

A hand rest gently on another outstretched hand.

Alexander Grey on Unsplash.

Statistically speaking, autistic people are far more likely to die by suicide than non-autistic people. They are also, statistically speaking, far more likely to die by physician assisted suicide than non-autistic people, in countries where this is allowed.

For example, in a study of 927 people who sought physician assisted suicide in the Netherlands (where this is legal) 39 of them were autistic. That’s about four per cent, but the prevalence of diagnosed autism in the Netherlands is only one to two per cent. The researchers go on to note that 21 per cent of these 39 people cite autism or intellectual disability as the “sole cause of suffering” that had prompted them to request assistance to die.

I don’t like speaking statistically. For a start, 21 per cent of 39 people is 8.19 people, which raises obvious questions. A little digging reveals that what the researchers mean really is eight people. Eight people with eight unique stories that include an account of autistic suffering so intense that they asked for help to end their lives.

But we do not have those stories, not really. Included in the report are carefully anonymised excerpts from the physicians’ notes, and this is the nearest that we can get.

‘The patient suffered from his inability to participate in society [ … ] [He] was not able to live among people, because he was easily overstimulated. This made him isolated’ (2019 (22), male, 70s, ASD)

‘The patient had felt unhappy since childhood and was persistently bullied because he was just a bit different from others [ … ] [He] longed for social contacts but was unable to connect with others. This reinforced his sense of loneliness. The consequences of his autism were unbearable for him [ … ] The prospect of having to live on in this way for years was an abomination to him and he could not bear it’ (2021 (26), male, 20s, ASD)

The debate about legalising physician assisted suicide in the UK is ongoing, and the British Medical Association have provided a helpful guidance document which sets out the main arguments, both for and against, without making a recommendation either way. In the document, they observe that the reasons people ask for assisted suicide are predominantly personal and social, not clinical, and also that “laws send social messages.” I agree that laws do that, and I also think that those seeking assisted suicide send social messages too.

For example, even just from these two tiny excerpts, I hear that a life worth living is one where people can participate in society and have social contacts, even if they are a “just a bit different from others.” It would be good to hear more. It would be good to sit down over a cup of coffee with each of these two men and ask them all my questions about their lived wisdom when it comes to autism.

I could ask “2019 (22), male, 70s, ASD”:

What causes the overstimulation - are there places where you don’t feel that?

Can we create more such places for autistic people to socialise?

And I could ask “2021 (26), male, 20s, ASD”:

What makes you feel different?

What kind of social contacts and connections do you think that you are looking for?

But of course, I can’t do that, because these two men have been assisted to die.

The word ‘welcome’ is striking to me here. What does it mean to welcome someone, not to merely include or tolerate, but to really welcome someone.

When approached for comment, autistic theologian Claire Williams said:

‘There is something of a personal and social tragedy reflected in these cases. If we understand that much of the difficulty that autistic people suffer is caused by society – as per the neurodiversity paradigm – then it is the case that these two nameless men were failed by society. They felt that their lives could not find a place in an unwelcoming world. It is, of course, their choice to end their lives but I do also think that God chose to start their lives and finds them to be infinitely valuable. They were both made in God’s image and reflect something of it. That they felt there isn’t a place for them that is suitable is a tragedy because society should do better to welcome them.’

The word ‘welcome’ is striking to me here. What does it mean to welcome someone, not to merely include or tolerate, but to really welcome someone, even if they seem ‘a little bit different from others’? Dr Léon van Ommen, another theologian who writes about autism, suggests that it is a matter of making oneself and one’s resources fully available to that person, to the point where they feel that you belong to them. This is not to promote relationships with unhealthy power dynamics, but to highlight that when a person feels truly welcomed by another, they feel the opposite of owing a debt or being a burden – they feel they are of value, that you would be lacking something without them.

I feel we are lacking something without you, “2019 (22), male, 70s, ASD”. And I feel we are lacking something without you, “2021 (26), male, 20s, ASD”. Not to forget the 37 others who are a little like you. We can pause to reflect on the social messages that you have sent, what you are teaching all of us about what it means to live a “good” life. But I am sorry that you have all died now and we cannot hear more.

Whether people in the UK should be able to choose physician assisted suicide, I, personally, am not yet sure. Like the BMA, I see and respect the very good arguments both for and against. But eight people have chosen physician assisted suicide due to autism or intellectual disability, and when it comes to the social messages that sends, I feel compelled to sit down and listen.

Column

Assisted dying

Care

Comment

14 November 2024

4 min read

Proposed euthanasia safeguards insult our NHS

We must defend a collective sense of care and generosity.

George Pitcher

George is a visiting fellow at the London School of Economics and an Anglican priest.

A gable end mural depicts a nurse in scrubs and a mask turning and looking towards the viewer.

A mural of an NHS nurse during COVID, Manchester.

Mural Republic

It was, I believe, the late political satirist Simon Hoggart who coined the Law of the Ridiculous Reverse, which held that, if the opposite of a statement is plainly absurd, then it was not worth making in the first place.

This law comes to mind when Labour MP Kim Leadbeater promises that her Assisted Dying Bill will have the “strictest safeguards in the world”, one of which is that those patients who have ordered their fatal dose “would be allowed to change their mind at any time.”

Where, exactly, has it ever been suggested that an individual, having asked for an assisted death, would not be allowed to change their mind? I’m just wondering which legislator or medical professional has proposed that once a lethal draught has been prescribed then there is no turning back.

I’m struggling to picture the circumstance in which a terminally ill patient is pinned down and killed, the last words that they hear being: “I’m sorry Mrs Simpkins, but everyone’s gone to a lot of trouble. You asked for it and you’re jolly well going to get it.”

This is important because, apparently, being able to change your mind about asking for help to kill yourself is one of the strictest safeguards in the world. I hope Ms Leadbeater will forgive me for pointing out that this doesn’t really stack up.

And what’s serious about it is that it’s also a massive straw man argument. The clear and rather devious implication is that one of the arguments being made against the introduction of an assisted suicide law is that patients won’t be able to change their minds about it, which I think we can all accept simply isn’t a fact at all. It’s absurd – a Ridiculous Reverse.

So I’ll defend the NHS with a religious fervour. To my mind, healthcare is a holy mission. We meddle in law with the Hippocratic Oath at our very deep peril.

It’s also hugely contemptuous of the medical profession in general and rude to the NHS in particular. That’s because there’s a snide impression behind Leadbeater’s comment there may be hundreds of budding Harold Shipman out there, but her powerful safeguards are going to protect us from them.

We’re in danger of becoming inured to this kind of insult from politicians directed at the NHS. And it’s worth exploring why they might think we need to be protected from unscrupulous doctors and nurses. In this case, one possible reason is that the NHS isn’t being particularly helpful in giving the euthanasia enthusiasts what they want.

Doctors and their staff have plenty of ethical objections to assisted suicide. But leave those aside for a moment. At the practical level, the NHS has made it clear that it doesn’t have the infrastructure to operate a policy of assisted deaths safely. And it can’t afford to set one up. So a government that introduces assisted suicide is going to have to organise and regulate its own assisted death agency.

“Oh,” the assisted dying lobbyists seem to exclaim, “we’d presumed you’d do as you’re told.” Just hand out the hemlock. Take your instructions from the legislature.

But the NHS is better than that. And it’s that kind of high principle that so infuriates feckless politicians. It was the late Nigel Lawson who said, somewhat ruefully, that the NHS “is the closest thing the English have to a religion”. The right wing of politics regularly tells us it’s time to renounce that religion.

To worship the NHS as a religion would, literally, be idolatrous. But it’s not so to acknowledge its religious qualities. Just look at the word – the Latin religio means something like “good faith”, the essence of who we are, what makes us good.

The NHS, in its post-war incarnation, has been central to who we are as a people and what defines us. It’s something to do with our collective sense of care and generosity to one another. Its members, like our national Church, make up a single body.

This is not to co-opt the NHS as the medical wing of the Church. It’s no part of the NHS’s brief to proselytize – rather the reverse; Christian medical staff have been in deep disciplinary trouble for evangelising. It is a profoundly secular organisation.

So the NHS emphatically isn’t in the business of propagating the gospel. But that’s not to say that we can’t be in the same business. Many priests have stories of their most affirming work being in the company of people of other faiths or of none.

The NHS’s proud heritage is to offer treatment free to anyone at the point of access. Put another way, it will seek to heal anyone who comes to it. I make no apology for saying that sounds familiar.

So I’ll defend the NHS with a religious fervour. To my mind, healthcare is a holy mission. We meddle in law with the Hippocratic Oath at our very deep peril.

And when NHS professionals tell us where we can stick our assisted suicides, I respectfully suggest we give it our solemn attention, rather than patronisingly offering a Law of the Ridiculous Reverse.