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.

Article

Assisted dying

Care

Creed

Death & life

19 November 2024

5 min read

“Shortening death” sidesteps the real battle

We need to do more than protest bad deaths, we need to protest death itself, it's more than biological.

Tom Dove

Tom is a physician and completing a theology doctorate.

A hand drapes over the side of an object out of shot.

Michael Schaffler on Unsplash.

What is “death”? It’s surprising the term has received little attention in the assisted dying discussion so far, because more hangs on the answer than one might expect. At a press briefing, Kim Leadbeater MP stated that the assisted dying bill she is proposing is about “shortening death, not ending life.”

But what meaning does “death” have here?

The current bill defines neither “death” nor “dying.” Granted, it implies a biological definition. The bill speaks of administering approved substances to “cause that person’s death” and of capacity and decision-making around “ending life.” These fit the understanding of death with which the medical profession operates—death is the point in time when the combined functions required for human life cease. It is a one-time event, the end of physiology, and so is recognised by a combination of physical signs.

Death, then, is a diagnosis.

So, too, “dying”—though here the waters are murkier. Setting aside sudden deaths, medical talk of dying takes us out of binary territory. Dying speaks of a process, of the “terminal phase.” Within medicine a diagnosis of dying heralds the expectation that a person’s death will occur within hours or days. And so, the focus shifts. The task of care is no longer the coordinated work of investigation, preserving life, and treating symptoms. Now attention is on bringing relief to the process of dying.

The bill seems wise to much of this. Though definitions of death and dying are absent, the bill does define terminal illness—“an inevitably progressive condition which cannot be reversed by treatment” and from which the event of death “can reasonably be expected within 6 months.” And so, it clearly distinguishes terminal illness from biological death and, implicitly, from dying.

Of course, terminal illness and biological death are related. Terminal illness is irreversible, and where terminal illness leads is death. Or, you might say, it leads to the end of life. Apart from the timescale of six months, the same may be said of ageing: ageing is irreversible, and where ageing leads is death. This is why Kim Leadbeater’s comment was puzzling to me. I suspect what she really meant was “shortening terminal illness.” If so, this is confusing because, within the framework of the bill, “shortening terminal illness” and “ending life” are identical. It seems she was getting at something else.

“It seems odd that in the name of eliminating suffering, we eliminate the sufferer.”

Stanley Hauerwas

I suspect Kim Leadbeater was echoing a conviction at home in the Christian faith. That is, try as we might to keep death at a distance and restrict it to a faraway frontier, the life of human beings involves death. I don’t simply mean the biological death we witness—the deaths of friends, relatives, or even strangers. I mean death intrudes upon the way we experience life. Death is more than simply biological.

The fear of death belongs in this category. For some, the impending loss of relationships and joys casts a shadow over life, giving birth to apprehension. Death is not simply a factual matter but something that exerts power and influence. Or take disease and illness. Built into the notion of terminal illness is the idea that the sickness borne by a human body will ultimately bring about that body’s death. That body already speaks of its death. Death is making itself felt in advance.

And so, death is more than a biological event. Even living things can bear the marks of death.

This is no novel claim. The creation account recorded in the Bible says that in the beginning, there was good. But an intruder appears. In the wake of humanity’s choice to go its own way rather than the way of its Maker, death arrives on the scene. And death is an imposter—not simply a physiological fact at the end of the road, but a destructive and alien presence in God’s good world.

Understood in this way, death is not something that God intends humans simply submit to. Death is something to protest. This is why Kim Leadbeater’s comment gets at something important: this kind of death should be protested. The marks of death should not be accommodated, because they do not belong to the goodness of what God has made.

At the heart of the Christian faith is God’s own ultimate protest against the force of death. Christians celebrate that God himself came in the man Jesus to “destroy death.” This is plainly more than biological. Jesus came to free humanity from the entirety of death’s grip. Hence why, when Jesus speaks of “eternal life” he means more than endless biological existence. He means liberation from all the havoc that death brings to bear within God’s world. To the Christian imagination, the power of death must be protested because God protested it first.

The question is how to protest death. Within the framework of the bill, shortening death or terminal illness is identical with ending life. This is the only form protesting death can take.

But the Christian faith makes a far more radical claim: God alone overcame death by dying. This is the point: Jesus was the one—the only one—who emerged resurrected victor in the contest with the power of death. In seeing his death and resurrection, an unshakeable hope emerges. Death is not the victor. And this hope stands above our present experience of death—in whatever form—and, at the same time, calls us to join the protest.

Ethicist Stanley Hauerwas once wrote: “it seems odd that in the name of eliminating suffering, we eliminate the sufferer.” I have deliberately avoided discussing suffering, not least because it would take me too far afield. Yet Hauerwas has put his finger on what I’m getting at. Protesting death—in the big sense—belongs to the Christian faith. Protesting suffering and pain, economic and racial injustice, fractured relationships and broken societies, are all part of this protest. But can eliminating those who live within the shadow of death be part of this protest? I think not. The Christian faith believes there is only one who can overcome death in this way, and that is God himself—who has already done it.