Review
Assisted dying
Life & Death
5 min read

The dying decision: choice, coercion and community

Plan 75 reveals a lot about our relationlessness, says Siân Brookes as she reviews the Japanese drama about medical assistance in dying

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 retirement home, a older person sings karaoke while the person behind waves a hand.
Chieko Baishô plays Michi.
Happinet.

“Being able to choose when my life will end provided me with peace of mind. With no feelings of doubt. She led a good life on her terms, people will say”.  

In Chie Hayakawa’s recent dystopian drama Plan 75, these are the words of a silver-haired, wrinkled woman in a promotional video for the eponymous plan – a government scheme which offers all over 75-year-olds the option of a pain-free death at the time of their choosing.  

And yet for Michi, an older lady toying with the decisions around Plan 75 it doesn’t really feel like it is her choice which matters at all. Whether it is the $1,000 grant offered as an incentive to die, the luxury amenities on offer at the Plan 75 facility promoted in leaflets and magazines, or the young person employed to gently guide the candidates towards their death (but whose real job it is to make sure they follow through with it), this is a world which has a clear agenda – to rid society of older people. Indeed, it is clear that this is a vision of a world which believes it is better for old people to die than to put financial burdens on the economy or their families, and this is a culture willing to subtly coerce individuals to accept and act on that belief.  

Plan 75 reveals an interesting point at the heart of the MAiD (Medical Assistance in Dying) debate. One of the primary reasons that MAiD is so attractive is the ability to take back control of one’s life and death, yet what happens when that seeming control isn’t really within the individual’s own control at all? For Plan 75, what is marketed as giving control back to older people, is really just a twist on a more sinister political policy to pressure individuals to sacrifice their “burdensome” lives for the greater good. Of course, this is a common argument for rejection of assisted suicide. This is the dangerous ‘slippery slope’, where MAiD begins as an option only for those who desperately need it to relieve intense physical suffering. Yet it quickly becomes a tool to remove people whose lives no longer seem worth living due to societal expectations and opinions, rather than any objective reality.  

Do we ever truly choose to die totally independent of the expectations of those around us? 

For many, this problem can be appeased through strict legal controls over MAiD – as long as the powers that be are regulated, MAiD is still OK. As long as it is the individual who maintains control over their own death (and not the state), the goal of personal autonomy is maintained and all is well. And yet this perspective fails to ask the question - is such control over our own death ever actually possible? Do we ever truly choose to die totally independent of the expectations of those around us? In a world which places so little value on old age, can older people really make choices unaffected by that (deeply flawed and inhumane) logic? And, indeed - the elephant in the room – no matter how much we try to control death, in the end is it not death that ultimately controls us? As fundamentally finite beings we can never escape it completely – it will always find us one way or another. Ultimately, we will all have to face the reality of death when it comes to us. Complete control and autonomy are never truly possible. 

In light of this unveiling, the possibility that complete choice and autonomy around death isn’t really an attainable goal, what better options might we pursue? 

Where previously we would find comfort and hope in being loved, known and held by others in our death, now all too often this isn’t the case. 

One thing is clear in Plan 75, the isolation and loneliness of older people in a society that has rejected them is deeply problematic. The movie primarily follows the stories of Michi, who lives alone with no family and Yukio Okabe, an older man totally estranged from his remaining family. Both face life, and are facing death, alone. We live in a world where increasingly we are forced to face death alone. When our final days and hours rarely happen in the family home, surrounded by our loved ones, but in faceless institutions devoid of lifelong meaningful relationship the sense that we are no longer doing death together as a society is acute. Where previously we would find comfort and hope in being loved, known and held by others in our death, now all too often this isn’t the case.  

At the same time, there is no doubt that our modern world is unceasingly committed to the ideal of individual personal agency and autonomy – “She led a good life on her terms”. As a myriad of philosophers and theologians have commented, belief in human autonomy has come to replace belief in God. And MAiD is one area which reveals this to be the case most acutely. Where previously we would turn to God to find comfort in the face of our finitude, instead now we turn to ourselves – the last hope we find in the face of death is our individual ability to control it.   

Death and health should be a corporate phenomenon – when one person is ill, all of society is ill. 

The German theologian Eberhard Jüngel described death in this broken world as “the occurrence of complete relationlessness”. In fact, Jüngel suggests that as human beings we are first and foremost made up of our relationships – we are truly human not by how we self-define in isolation but how we relate – how we relate to the God who made us, and how we relate to other people. This need for relationship is found most acutely in the face of death. As Ashley Moyse points out in his book, Resourcing Hope for Ageing & Dying in a Broken World, death and health should be a corporate phenomenon – when one person is ill, all of society is ill. And so, as death increasingly becomes the journey of the individual – when we face death in isolation from others and in isolation from God no wonder we feel such a strong desire towards control, towards ending our lives prematurely, towards science to help us avoid any more pain than we can bear alone. 

In Plan 75 we see glimmers of hope in the possibility of relationship. As Michi and Yukio find rare moments of human connection with a long-lost nephew, with a young person working for Plan 75, with another older person going through the same questions around mortality you can’t help but feel deeply uncomfortable with their choice to apply for the scheme. It is in the hints of love, physical touch, smiles exchanged, even a simple conversation shared between two people that suddenly MAiD seems so disconnected with the hope that life still has to offer through relationship. Perhaps if we could imagine a world where death became no longer an occurrence of complete relationlessness, but a locus for relational dependence, for familial connection, for leaning on God and not ourselves, the need for MAiD would feel a little less necessary. It would be a world with a little more hope. 

Article
Assisted dying
Life & Death
4 min read

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.
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.