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

Comment

Justice

15 October 2024

5 min read

Will clinicians and carers objecting to assisted death be treated as nuisances?

The risk and mental cost of forcing someone to act against their conscience.

Henna Cundill

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

A tired-looking doctor sits at a desk dealing with paperwork.

Francisco Venâncio on Unsplash.

After a formal introduction to the House of Commons next Wednesday, MP’s will debate a draft Bill to change UK legislation on Assisted Dying. Previously, a draft Bill was introduced in the Scottish Parliament in March 2024, and is currently at committee stage. Meanwhile, in the House of Lords, a Private Member’s Bill was introduced by Lord Falconer in July and currently awaits its second reading. These draft Bills, though likely to be dropped and superseded by the Commons Bill in the fullness of time, give an early indication of what provision might be made on behalf of clinicians and other healthcare workers who wish to recuse themselves from carrying out a patient’s end of life wishes on grounds of Conscientious Objection.

There are various reasons why someone might want to conscientiously object. The most commonly cited are faith or religious commitments. This is not to say that all people of faith are against a change in the law – there are some high-profile religious advocates for the legalisation of Assisted Dying, including both Rabbi Dr Jonathan Romain and Lord Carey, the former Archbishop of Canterbury. Even so, there will be many adherents to various faith traditions who find themselves unable to take part in hastening the end of someone’s life because they feel it conflicts with their views on God and what it means to be human.

However, there are also Conscientious Objectors who are not religious, or not formally so. Some people, perhaps many, simply feel unsure of the rights and wrongs of the matter. The coming debates will no doubt feature discussion of how changing the law for those who are terminally ill in the Netherlands and Canada has to lead to subsequent changes in the law to include those who are not terminally, but instead chronically ill. The widening of the eligibility criteria has reached a point where, in the Netherlands, one in every 20 people now ends their life by euthanasia. This troubling statistic includes many who are neurodivergent, who suffer from depression or are disabled. It is reasonable that, even if a Conscientious Objector does not adhere to a particular religion, they can be allowed to object if they feel uneasy about the social message that Assisted Dying seems to send to vulnerable people.

“You will often find that legislation that provides a right to conscientious objection is interpreted by judges these days in a way that seems to treat conscientious objectors as nuisances”

Mehmet Ciftci

Conscientious Objection clauses can themselves send a social message. A response to the Scottish Bill produced by the Law Society of Scotland notes concern over the wording of the Conscientious Objection clause, as it appears to be more prescriptive in the draft Bill than in previous Acts such as the Abortion Act of 1967. In the case of any legal proceedings that arise from a clinician’s refusal to cooperate, the current wording places the burden of proof onto the Conscientious Objector, stating (at 18.2):

In any legal proceedings the burden of proof of conscientious objection is to rest on the person claiming to rely on it.

The Bill provides no indication of what is admissible as ‘proof’. Evidence of membership of a Church, Synagogue, Mosque or similar might be the obvious starting point. But where does that leave those described above, who object on grounds of personal conscience alone? How does one meaningfully evidence an inner sense of unease?

The wording of the Private Member’s Bill, currently awaiting its second reading in the House of Lords, provides even less clarity, stating only (at 5.0):

A person is not under any duty (whether by contract or arising from any statutory or other legal requirement) to participate in anything authorised by this Act to which that person has a conscientious objection.

Whilst this indicates that there is no duty to participate in assisting someone to end their life, there remains a wider duty of care that healthcare professionals cannot ignore. Thus, a general feature in the interpretation of such conscience clauses in medicine is that that the conscientious objector is under an obligation to refer the case to a professional who does not share the same objection. This can be seen in practice looking at abortion law, where ideas around conscientious objection are more developed and have been tried in the courts. In the case of an abortion, a clinician can refuse to take part in the procedure, but they must still find an alternative clinician who is willing to perform their role, and they must still carry out ancillary care and related administrative tasks.

Placing such obligations onto clinicians could be seen as diminishing rather than respecting their objection. Dr Mehmet Ciftci, a Researcher at the McDonald Centre for Theology, Ethics and Public Life at the University of Oxford comments:

You will often find that legislation that provides a right to conscientious objection is interpreted by judges these days in a way that seems to treat conscientious objectors as nuisances who are just preventing the efficient delivery of services. They are forced to refer patients on to those who will perform whatever procedure they are objecting to, which involves a certain cooperation or facilitation with the act.

This touches everyone, even those who (if the Bill becomes law) will still choose to conscientiously object. Therefore, it is important to consider that the human conscience is a very real phenomenon, which means that facilitating an act that feels morally wrong can give rise to feelings of guilt or shame, even if one has not been a direct participant.

Psychologists observe that when feelings of guilt are not addressed, if they are treated dismissively or internalised, this can significantly erode self-confidence and increase the likelihood of depressive symptoms. But even before modern psychology could speak to the effects of guilt, biblical writers already had much to say on the painful consequences of living with a troubled conscience. In the Psalms, more than one ancient poet pours out their heart to God, saying that living with guilt has caused their bones to feel weak, or their heart to feel heavy, or their world to feel desolate and lonely.

If the Conscientious Objection clauses of the new Bill being proposed on Wednesday are not significantly more robust than those in the draft Bills proposed thus far, then perhaps that is something to which we should all conscientiously object? There is much to discuss about the potential rights and wrongs of legalising Assisted Dying, but there is much to discuss about the rights and wrongs of forcing people to act against their consciences too.