The careless conflation of independence, autonomy and dignity

As Jersey begins to legalise assisted dying, there’s keyword confusion.

Henna Cundill

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

A elderly women in a care home stands and places her hands on the shoulders of a seated woman.

Eberhard Grossgasteiger on Unsplash.

Reviewing Canada’s legislation on assisted dying, one anonymously authored article raises the concern: “Does it make dying with dignity easier than living with dignity?” This insightful question cuts to the centre of the debate: dignity. Or more particularly, the unwitting conflation of dignity with independence, and of independence with autonomy.

As Jersey becomes the first place in the British Isles to begin the process of legalising assisted dying, I feel that we should listen carefully as to how and where these terms are being used, both in the formal debate, and in the commentary that surrounds it. The States Assembly in Jersey voted to allow the development of assisted dying legislation for those with six months to live (or twelve months if their condition is neurodegenerative). A second vote to make assisted dying available more broadly to those who experience conditions that entail “unbearable suffering” was defeated by a narrower margin. Reading the flurry of press releases that followed the vote, these keywords, autonomy, independence, and dignity, are everywhere. But are we really thinking about what these words communicate?

People in positions of wealth and power have more independence and autonomy, more choices and freedoms, but it is we who ascribe dignity to those in that position.

The word dignity comes from the Latin word dignus, meaning ‘worthy’, and this is still the primary definition given to the English word dignity today. The OED has it as “the quality of being worthy or honourable”, immediately followed by reference to “honourable or high estate”. If this is so, then dignity is not something that can be bought, nor assumed – it is a status conferred upon someone by the esteem in which other people hold them. The haughtiest person in the world can still be esteemed undignified, as can the richest. Moreover, the opposite is also true: we are never prevented from conferring dignity upon, and esteeming the worthiness of, those who live the humblest of lives.

And yet, if we are honest with ourselves – do many of us not quietly associate the idea of becoming rich and powerful with becoming dignified? Do we not tend to assume the worthiness of those in high office – at least until we meet them and realise pretty quickly that they all put their trousers on one leg at a time, the same as the rest of us. This association happens because we have such a tendency to conflate dignity with independence (the ability to live without assistance from others) and autonomy (the ability to make one’s own decisions, and not have those decisions limited or interfered with). People in positions of wealth and power have more independence and autonomy, more choices and freedoms, but it is we who ascribe dignity to those in that position. It is society who sees the autonomy of those in high status, and esteems it as dignified.

Does this not unwittingly suggest that choosing to live in a state of extreme dependence on palliative care is, by implication, undignified?

Repeatedly ancient wisdom, in the bible, warns us not to assume that dignity comes with the freedom of wealth or power. All the great ‘heroes’ of that book suffer their indignities. Fresh from the success of his Ark project, Noah gets drunk and exposes himself. Elated from a victory against an enemy, King David dances half-naked through the streets. These are just two examples of the catalogue of embarrassments and mishaps that beset nearly all the kings and leaders whose stories are told as part of the Christian story. One after another, they stumble and struggle with life and leadership. The apostle Paul explains that this is because God uses the foolish things of this world to shame human pride, “for even the foolishness of God is still wiser than human wisdom.” Therefore, Paul argues, God chooses to speak to us through the weak and the lowly things and people of this world. Never was this demonstrated so clearly as when Jesus was born in a draughty stable, lived a life of poverty, and died a criminal’s death on a cross.

But what has all this to do with the debate over assisted dying? Well, I am struck by how often the idea of losing one’s independence (through disabling or terminal illness) is conflated with losing one’s dignity, and so dying through personal choice (autonomy) is presented as regaining it. One campaign group that speaks to this debate even calls itself ‘Dignity in Dying’ – but does this not unwittingly suggest that choosing to live in a state of extreme dependence on palliative care is, by implication, undignified?

Independence is not possible for everybody, or not possible to the same degree. And dignity? Well, dignity is possible for anyone.

The Dean of Jersey, the Very Reverend Mike Keirle, has spoken of his concern that the change in legislation will make vulnerable people feel pressured to end their lives. Examples from Canada, where physician assisted dying is already available, show that his concern is not unfounded. In 2022, Canadian veteran and Paralympian Christine Gauthier phoned her caseworker to chase up the over-due installation of her new wheelchair ramp. She then describes how she was horrified to find herself being advised to consider assisted dying instead.

"It is remotely just what they're doing,” says Gauthier, “exhausting us to the point of no return. […] I was like, 'Are you serious?' Like that easy, you're going to be helping me to die but you won't help me to live?"

Gauthier is not alone – she spoke out when she learned that four other Canadian veterans had reported similar experiences. In these unhappy moments, one can see how dangerous the assumption can be – the assumption that no one would want to live a life of needing help. Here are disabled people who do want to live, and this assumption, this careless conflation of independence, autonomy, and dignity, leaves them fighting for their right to do so. Why should anyone have to fight or even speak for their right not to commit suicide? It is little wonder that disabled actress, Liz Carr, describes assisted dying legislation as “terrifying” for disabled people.

I respect that there are terminally ill people, and those who love them, who speak from a desire to end their suffering; it is clear that people on all sides of the debate need to have this difficult and emotionally charged conversation. But whatever the eventual outcome in terms of legislation, we must be careful that it is not based on careless assumptions, or on the conflation of one thing with an entirely different other. Independence is not possible for everybody, or not possible to the same degree. And dignity? Well, dignity is possible for anyone – it is a state that can be conferred whenever, and upon whomever society chooses to confer it. Autonomy is the matter in question – we are talking about autonomy in dying. And whatever happens, we should by no means legislate in a way that leaves disabled people esteemed unworthy, left open to the indignity of fighting for their right to live.

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Life & Death

29 August 2024

4 min read

A Bayesian theory of death

The sinking of the superyacht displays the probability, and banality, of death.

George Pitcher

George is a visiting fellow at the London School of Economics and an Anglican priest.

Rescue workers look at the plan of a yacht.

The search for the Bayesian.

Vigili del Fuoco.

On any statistical calculation, the probability of dying by drowning when your luxury yacht suddenly and inexplicably sinks at anchor in the Mediterranean has to be extremely low.

So it’s the cruellest of ironies that tech tycoon Mike Lynch should so die, along with his daughter and five others, having devoted his commercial life to the application of such statistical probabilities. He had named his yacht Bayesian after the 18th-century theorem that introduced the idea that probability expresses a degree of belief in an event.

That doesn’t expressly mean religious belief. But, intriguingly, it doesn’t exclude it either. According to Thomas Bayes, who published his theorem in 1763, the calculable degree of belief may be based on prior knowledge about an event, such as the results of previous experiments, or on personal beliefs about it.

In essence, you don’t believe your yacht will capsize in the night and sink in seconds, because your experience tells you so. That belief can mathematically be included in the probability of it happening.

We can transfer the method into religious praxis. Christian belief in the event of resurrection, for instance, can be calculated in the probability that the deaths of the Lynches and others aboard the Bayesian are not the end of their existence.

It’s an intriguing legacy of Lynch’s work for theologians. But it’s the sheer lack of probability of the lethal event occurring at all that lends it its random banality. It’s that death visited those asleep on a yacht in the small hours that lends this news story such tireless legs, not just that these were super-rich masters and mistresses of the universe.

There have been bitter observations on social media that the Bayesian’s victims have commanded limitlessly greater attention than the many thousands of refugees who die in small-boat crossings of the Mediterranean every year.

This is a category mistake. And again, Bayesian theory can be deployed. Experience supports our belief that crossing the sea in overcrowded and unseaworthy vessels can all too often lead to tragically terminal events. The probability of death is plain. Again, it’s the sheer randomness of the Bayesian yacht event that sets it apart.

If death can visit at any time, there can be no difference in the valuation of long or short lives.

That randomness brings us back to the banality of sudden death among us, almost its ordinariness, something that just happens, often entirely out of the blue. The prayer book has the funeral words “in the midst of life we are in death”, meaning that death is our constant living companion. But that doesn’t quite cut it for me, because it tells us it’s there, but nothing of its true significance.

The tenets of Christian faith are regularly said to be those of a death cult; that it’s a deep-seated fear of death that leads us to avoid it with assurances of eternal life. But it’s the sheer banality of death, as displayed in the randomness of the Bayesian event, that seems to knock down that idea. In its randomness, death looks ridiculous rather than evil.

Conspiracy theories around the sinking of the Bayesian are a kind of denial of the reality of death too. We want there to be more to it than the utterly banal.

Author Hannah Arendt coined the phrase “the banality of evil” when covering the trial of Nazi holocaust architect Adolf Eichmann in Jerusalem. I’d want to suggest that it’s that same banality, that basic human ordinariness, that is the real nature of the supposed grim reaper, rather than his evil.

None of this can comfort the Lynch family, who mourn the loss of a much-loved father and his young daughter, or the families of the others who lost their lives on the Bayesian. But it is meant to go some way towards an explanation of what we mean in Christian theology when we bandy about phrases such as “the defeat of death”. Because it’s not a wicked serpent that’s been defeated, more of a pointless clown.

There is something especially painful about the death of the young, such as that of 18-year-old Hannah Lynch on the Bayesian that night, a young woman on the threshold of life. And – God knows – the even younger lives we’ve read about being taken lately.

But the concept of banality may lead us to another tenet of faith: The completeness of every life. If death can visit at any time, there can be no difference in the valuation of long or short lives.

A poem, often ascribed to a former dean of St Paul’s cathedral, begins with the line: “Death is nothing at all.” That’s wrong, as an idea. Death is as significant an event as birth. But its defeat is in keeping it in its place.

The dignity in simplicity with which football manager Sven-Göran Eriksson greeted his final illness is a masterclass in this tactic for life. Death isn’t to be negotiated, it’s just there.

In the end, death isn’t a Bayesian probability, it’s a certainty, for all of us. The difference, in Bayesian theory, must be the belief we bring to our personal calculations of the probability of the event.