Article
Assisted dying
Comment
Death & life
5 min read

The careless conflation of independence, autonomy and dignity

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

Column
Comment
Film & TV
4 min read

It's a miracle that ITV's drama-docs tell gospel truth

What we need to ask of the well told stories that move us.

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

A doctor in blue scrubs stands looking exhausted.
Joanne Froggatt playing Dr Rachel Clarke.
ITV Studios/ITV.

ITV has reopened a debate over the value and validity of drama-documentaries, with two immensely powerful political serials. Breathtaking, set in hospital wards as the covid crisis hit the UK, concluded last week. Before that, Mr Bates vs. the Post Office did more for justice in a few hours for wrongly accused sub-postmasters, sacked and imprisoned for frauds that didn’t exist, than any number of leaden public inquiries stretching into a cynically can-kicking future. 

A regular refrain from doubters of drama-doc is to question whether events portrayed really happened. At the most extreme end of denial, invariably motivated by political self-interest, if a scene can be shown to be non-factual, then the whole thing can be dismissed as rubbish. 

I’m here to knock down that argument, not least because it has the most profound implications for people of faith and how they own their sacred scriptures. 

Truth is not only about events, but about love and hope and self-sacrifice and much else besides. 

Take Breathtaking, based on the book of the experiences of front-line doctor (and breathtakingly good writer) Rachel Clarke. There were more than a couple of scenes that I thought wouldn’t, indeed couldn’t, have happened in a factual reality. I can’t know, because I wasn’t there. But, importantly, I don’t care either, for reasons I’ll come to. 

These scenes related to the death from covid, contracted on duty as a consequence of inadequate PPE equipment, of a much-loved fellow nurse called Divina. A colleague reads cards from friends to her as she switches off the life-support machines, while our heroine consultant bears tearful witness. Later, all her colleagues gather, socially distanced, to watch a livestream of her funeral. 

If these events happened in real time, then I apologise profusely to Clarke and her team. But my guess – and this makes the drama even more heartbreaking rather than less – is that they simply wouldn’t have had the time. As with soldiers in a war zone, which is the regular analogy of choice, they were overrun by critical cases for whom survival was the imperative. They surely would not have had the bandwidth, as it were, to bury their dead.   

Why this doesn’t matter, indeed why it is vital that it doesn’t, is that drama addresses human emotions as well as human experiences. So it’s at least as important to express how it felt as to show exactly what happened. This isn’t manipulative, because truth is not only about events, but about love and hope and self-sacrifice and much else besides, all of which point to bigger truths about the human condition. 

Those somethings are miracles. So, ask not: Did it happen?  Ask instead: What has happened?

Not so long ago, you couldn’t bump into anyone from the digital marketing professions without them mooing on about “storytelling”, the idea that corporates and their brands need to frame their offers to market in an engaging narrative. 

I’ve always thought they were rather late to that party. So stories are important? Who knew? Similarly, journalists – or reporters at least – speak of their products as stories. And the good ones tell us something we don’t already know. But the effort here (or at least it should be) is to relate what is provably, factually true. 

This is rather different from the motivation of those of us with a religious faith, for whom Truth with a capital T points to something that transcends the demands of simple reportage. Yes, it’s about an emotional response, but emotions are human too. They’re also insufficient on their own for full engagement with the divine drama. 

The mystery of this drama is played out at church on at least a weekly basis in the Eucharist, when Christians come together in communion, as the mystical body of Christ and as if invited to his supper for the very first time. It’s not just an event or a re-enactment, it’s the drama of now and of the real presence (call it the real thing). 

Mystery is what the scriptures of the three Abrahamic faiths endeavour to address. For Christians, the life death and resurrection of the Christ; for Jews, the deliverance of God’s people and, for Muslims, the revelation of the Prophet. These are not just historical records, they are stories that explore the mind of God, the better to understand human existence. 

That’s to explore the miraculous, to allow room for miracles in human existence. At Easter, Christians will celebrate what we might call the big one: The resurrection of the Christ and the defeat of death. So, to that obvious question: What really happened? 

Well, something happened. Something so incalculably enormous that, within three days of the crucifixion, the utterly defeated and dispersed first disciples were transformed. Something so incomprehensible that they struggled to explain it with the language of simple reportage, though they tried. Something for which untold thousands were suddenly prepared to die. Something which was apparently defeated by worldly power, but is alive and well as the world’s largest religion two millennia later. 

Those somethings are miracles. So, ask not: Did it happen?  Ask instead: What has happened?  And the story is not only about what has happened, it’s really about how, emotionally and spiritually, we feel and respond to it.  

In short, we’re asked to give ourselves up to this drama-documentary. It’s breathtaking.