Article
Assisted dying
Death & life
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.
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.  

Review
Ageing
Assisted dying
Culture
5 min read

For love there is no charge

Out of mind old people are at the centre of Allelujah! Sian Brookes reviews the film adaptation of Alan Bennett’s play.

Sian Brookes is studying for a Doctorate at Aberdeen University. Her research focuses on developing a theological understanding of old age. She studied English and Theology at Cambridge University.

In a hall decorated for a celebration a person stands in front of a seated group, all have their arms raised in celebration.
Jazz hands at the hospital.
BBC Films.

Spoiler alert – this film review reveals significant elements of the plot. 

Allelujah! is not a film that shies away from the big issues. In fact, you would be hard pressed to find a big issue this comedy/political commentary/drama/part-thriller doesn’t at least make reference to (and yes, it spreads itself across all of these genres too). With such an eclectic approach it is difficult at times to keep up with the narrative, and the deeper meaning of the film. Based on the Alan Bennett play, the plot centres around The Bethlehem, a small northern hospital for geriatric patients, which is facing closure due to the Tory government’s efficiency drive. It focuses on two members of staff, Alma Gilpin, a stoic and matter-of-fact but seemingly excellent nurse who has served the hospital her entire career, and a younger Dr Valentine. Other protagonists include an ex-miner patient and his son, a management consultant who has “made it” to London and is currently advising the Health Secretary to close hospitals such as the one in question for the sake of government finances. 

Whether it’s politics or the personal, this film has it all. It deals with levelling up, the cultural and economic gap between the north and south, the challenges of budget cuts in the NHS, the problems of a national health service claiming to 'care' but with managers more preoccupied by Westminster’s economic priorities. It depicts families waiting for older relatives to die in order to grab their inheritance, the broken relationship between an ageing man and his son, and those all-important stories of the older patients’ lives well-lived. And yet as the story line develops, a plot twist emerges which comes to overshadow the entire film, and in the process speaks to what is perhaps the most poignant of the many discussions it raises. Nurse Gilpin, who, until now has appeared consistently caring and committed to her patients, has been quietly administering fatal beakers of milk and morphine to those who she deems to be on “her list” of those who most need relief from their situation. When confronted by the doctor she justifies her actions with a multifaceted answer based on the requirement to provide more beds to a broken healthcare system, but also insisting “I had ended someone’s suffering”.  

When Dr Valentine remarks, “I like old people” a visitor responds “not even old people like old people”.

The manner in which Nurse Gilpin goes about what is effectively enforced euthanasia, is deeply chilling. And yet her reasoning is not entirely foreign to us – to end suffering could be deemed a noble cause. In fact, the need to simply delete the reality of suffering, particularly the suffering of the old is one that perhaps is not so uncommon. Throughout Allelujah!,we are reminded of our tendency to run from, to detest, to reject the suffering of the elderly in our society. When Dr Valentine remarks, “I like old people” a visitor responds “not even old people like old people”. A teenage intern declares to a patient “I hope I never live to be your age”. At the same time, characters look back on the days “when the elderly weren’t farmed out”, and questions are asked of families “if they love them, why do they put them away?”. A very good question. Of course, care needs are often too great for families to endure, yet it is still important to ask why the suffering of the old has become a professionalised service, which most of us avoid at all costs. Perhaps the answer to this is that we don’t like to watch the old suffer, we don’t like to watch them die, because their suffering and their death remind us of our future selves, our future suffering, our future death. In our sanitised, anything-is-possible-with-medicine-and-science society, death and the suffering that comes with it, is something from which we flee at all costs. Instead of acknowledging and working with it, we would rather pretend it wasn’t there at all.  

And yet, even as we try to avoid it, suffering and death are both certain parts of all our futures. 100% of us will die. For Nurse Gilpin, the solution to this is to bring on death prematurely, to erase the pain, overcome the misery by offering a false hope – that it doesn’t need to exist at all. In direct contrast to this, in a film which is littered with Christian references (Allelujah, The Bethlehem), there is a different approach taken by a messiah-type figure who seems to get everything right. Dr Valentine is compassionate and understanding. He not only challenges the political systems which undermine those most at the margins of society, but also has the kind of bedside manner we would all hope for in a doctor. In a closing monologue Dr Valentine utters the words of the doctors in the NHS, “We will be here when you are old, and we would die for you, we are love itself and for love there is no charge”.  

It is this suffering with which is so compelling, this suffering with which is truly sacrificial.

Nurse Gilpin and Dr Valentine offer two fundamentally different approaches to end of life care. One hastens the end quickly, deletes the suffering as efficiently as possible in order to make way for those in less pain. The other sits with those who suffer, holds their hand, gently cares for the human person that is in front of them. Even more, and perhaps most significantly Dr Valentine does not only watch from afar, but is willing to suffer himself for the sake of those in pain - working tirelessly, giving himself over day after day, fighting on with little sleep for limited pay just to make things a little less painful. It is this suffering with which is so compelling, this suffering with which is truly sacrificial, this suffering with which speaks of something much greater than politics, efficiency or inheritance, this suffering with which is indeed “love itself”, completely free of charge.  This is the logic that Christians see in the ancient notion of the incarnation, celebrated every Christmas, of God with us. This is what our older people need, this is what we will all need when we grow old. Let us only hope that when we get there, we find the one who is willing to offer it.