Behind the data: the social messages physician assisted suicide sends

If intense suffering caused by society drives autistic people to seek assisted death, then society has failed. Henna Cundill seeks the stories behind the data about such deaths.

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 4 per cent, but the prevalence of diagnosed autism in the Netherlands is only 1-2 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

Life & Death

9 November 2023

4 min read

The cold truth of Canadian lives not worth living

Canada’s implementation of medical assistance in dying concerns M. Ciftci, showing that a society consider some lives not worth living. Part of the How to Die Well series.

M. Ciftci

M. Ciftci has a PhD in political theology from the University of Oxford. He is currently writing a book about church-state relations that will be published by Palgrave Macmillan.

A IV drip bag hangs from a medical stand.

Marcelo Leal on Unsplash.

Alan Nichols’ application for euthanasia mentions only one health condition as the reason for his request: hearing loss. “Alan was basically put to death,” according to his brother. He was hospitalized after being found dehydrated and malnourished in his house. He asked his brother to “bust him out” of the hospital as soon as possible. A month after being admitting, he was euthanized through MAID (medical assistance in dying), despite the desperate objections of his family and his primary health practitioner. They were informed of the procedure over the phone only four days before it took place. They have since reported Alan’s case to the police; they argue he was not in a fit state of mind to understand the procedure or make decisions for himself. He had no life-threatening conditions. He was vulnerable.

Canada’s relaxed laws around MAID came to international attention when CTV News reported that a fifty-one-year-old woman chose MAID after failing for two years to find housing that would allow her to manage her multiple chemical sensitivities. Despite the best efforts of friends and even her doctors to get her suitable housing in Toronto, letters left behind documented her desperate yet fruitless search for help. She begged officials at all layers of government to help find an apartment free from the chemicals and cigarette and marijuana smoke that worsened her symptoms. “The government sees me as expendable trash, a complainer, useless and a pain in the a**,” she said in a video days before her death.

These are only some of the terrible stories that have been reported after Canada became the first Commonwealth country to legalise assisted suicide and euthanasia. Advocates of MAID will point to how comfortable Canadians are with it. As a recent poll revealed, MAID is supported by 73 per cent of Canadians, with 27 per cent supporting MAID even if the only affliction is poverty, 28 per cent for homelessness, and 20% for any reason whatsoever. Those numbers may shift as disability activists and medical professionals continue to raise the alarm over the consequences of growing numbers choosing MAID, from 2,838 deaths in 2017 to 10,064 in 2021.

MAID was introduced in 2016... Only those suffering from incurable diseases whose death was “reasonably foreseeable” were eligible, initially.

There are two reasons why the Canadian example teaches us to remain firmly opposed to the legalisation of assisted suicide and euthanasia in the UK.

The first is that the slippery slope in this case is real. Campaigners for Dignity in Dying claim they want only the legalisation of assisted suicide, not of euthanasia. The latter involves a doctor directly administering lethal drugs, without requiring the patient’s participation. (MAID permits both, although euthanasia is the method used in 99 per cent of cases.) They argue there is no evidence that legalising assisted suicide in the UK would lead to a loosening of laws over time. But this is contradicted by the timeline of events in Canada.

MAID was introduced in 2016 following the Supreme Court of Canada’s ruling in 2015 that the criminalisation of assisted suicide violated the Canadian Charter of Rights and Freedoms. Only those suffering from incurable diseases whose death was “reasonably foreseeable” were eligible, initially. But the MAID evangelists did not wait long before complaining that this was too restrictive. The courts obliged, and in 2019 the court of Quebec found the “reasonably foreseeable” condition to contravene the Charter. In 2021 the laws were changed to allow MAID for those whose natural death was not foreseeable, but who have a condition considered intolerable by the applicant. Those suffering only from mental illnesses will be eligible for MAID in March 2024.

The slope becomes more slippery still: the government is considering further expansion to allow “mature minors”, vaguely defined as children mature enough to make their own treatment decisions, to ask to be killed, even against a parent’s wishes.

A society that kills those who ask to be killed has already made a choice to consider some lives not worth living,

The second lesson is about what kind of society we want to be. For a doctor to present the option of being killed, which Canadian doctors are now obliged to do whenever “medically relevant”, even if the patient does not bring it up first, does not expand patients’ freedom. It is rather an invitation to despair. This is frequently forgotten when some think that denying patients the choice to seek death is “imposing Christian values” as one cleric of the Anglican Church of Canada said. Roman Catholics, Evangelical Christians, and others have opposed MAID because a society that kills those who ask to be killed has already made a choice to consider some lives not worth living, and to invite those already made vulnerable by their pain and distress to see themselves as a burden to others. Not to mention the perverse incentives created to reduce medical and palliative care.

We can and should support those who are frail and in need of care at the end of their lives to die with dignity, without hastening their deaths, without deeming their lives no longer worth living. Dame Cicely Saunders and other pioneers of the hospice movement have shown us what an alternative to assisted suicide and euthanasia would look like. Hospices put into practice the parable of the Good Samaritan, who responded with pity to the man beaten by robbers, bandaging his wounds and giving him a place to rest and receive care. Jesus tells the parable to show what it means to be a good neighbour to someone and how to react with compassion to suffering. What would have been the message of the parable if the Samaritan had instead reacted to the sight of the suffering man by reaching for his dagger?