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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.

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Conspiracy theory

Death & life

29 August 2024

4 min read

A Bayesian theory of death

The sinking of the superyacht displays the probability, and banality, of death.

George Pitcher

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

Rescue workers look at the plan of a yacht.

The search for the Bayesian.

Vigili del Fuoco.

On any statistical calculation, the probability of dying by drowning when your luxury yacht suddenly and inexplicably sinks at anchor in the Mediterranean has to be extremely low.

So it’s the cruellest of ironies that tech tycoon Mike Lynch should so die, along with his daughter and five others, having devoted his commercial life to the application of such statistical probabilities. He had named his yacht Bayesian after the 18th-century theorem that introduced the idea that probability expresses a degree of belief in an event.

That doesn’t expressly mean religious belief. But, intriguingly, it doesn’t exclude it either. According to Thomas Bayes, who published his theorem in 1763, the calculable degree of belief may be based on prior knowledge about an event, such as the results of previous experiments, or on personal beliefs about it.

In essence, you don’t believe your yacht will capsize in the night and sink in seconds, because your experience tells you so. That belief can mathematically be included in the probability of it happening.

We can transfer the method into religious praxis. Christian belief in the event of resurrection, for instance, can be calculated in the probability that the deaths of the Lynches and others aboard the Bayesian are not the end of their existence.

It’s an intriguing legacy of Lynch’s work for theologians. But it’s the sheer lack of probability of the lethal event occurring at all that lends it its random banality. It’s that death visited those asleep on a yacht in the small hours that lends this news story such tireless legs, not just that these were super-rich masters and mistresses of the universe.

There have been bitter observations on social media that the Bayesian’s victims have commanded limitlessly greater attention than the many thousands of refugees who die in small-boat crossings of the Mediterranean every year.

This is a category mistake. And again, Bayesian theory can be deployed. Experience supports our belief that crossing the sea in overcrowded and unseaworthy vessels can all too often lead to tragically terminal events. The probability of death is plain. Again, it’s the sheer randomness of the Bayesian yacht event that sets it apart.

If death can visit at any time, there can be no difference in the valuation of long or short lives.

That randomness brings us back to the banality of sudden death among us, almost its ordinariness, something that just happens, often entirely out of the blue. The prayer book has the funeral words “in the midst of life we are in death”, meaning that death is our constant living companion. But that doesn’t quite cut it for me, because it tells us it’s there, but nothing of its true significance.

The tenets of Christian faith are regularly said to be those of a death cult; that it’s a deep-seated fear of death that leads us to avoid it with assurances of eternal life. But it’s the sheer banality of death, as displayed in the randomness of the Bayesian event, that seems to knock down that idea. In its randomness, death looks ridiculous rather than evil.

Conspiracy theories around the sinking of the Bayesian are a kind of denial of the reality of death too. We want there to be more to it than the utterly banal.

Author Hannah Arendt coined the phrase “the banality of evil” when covering the trial of Nazi holocaust architect Adolf Eichmann in Jerusalem. I’d want to suggest that it’s that same banality, that basic human ordinariness, that is the real nature of the supposed grim reaper, rather than his evil.

None of this can comfort the Lynch family, who mourn the loss of a much-loved father and his young daughter, or the families of the others who lost their lives on the Bayesian. But it is meant to go some way towards an explanation of what we mean in Christian theology when we bandy about phrases such as “the defeat of death”. Because it’s not a wicked serpent that’s been defeated, more of a pointless clown.

There is something especially painful about the death of the young, such as that of 18-year-old Hannah Lynch on the Bayesian that night, a young woman on the threshold of life. And – God knows – the even younger lives we’ve read about being taken lately.

But the concept of banality may lead us to another tenet of faith: The completeness of every life. If death can visit at any time, there can be no difference in the valuation of long or short lives.

A poem, often ascribed to a former dean of St Paul’s cathedral, begins with the line: “Death is nothing at all.” That’s wrong, as an idea. Death is as significant an event as birth. But its defeat is in keeping it in its place.

The dignity in simplicity with which football manager Sven-Göran Eriksson greeted his final illness is a masterclass in this tactic for life. Death isn’t to be negotiated, it’s just there.

In the end, death isn’t a Bayesian probability, it’s a certainty, for all of us. The difference, in Bayesian theory, must be the belief we bring to our personal calculations of the probability of the event.