Article
Assisted dying
Comment
Death & life
Politics
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 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 dictionary 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. 

1,000th Article
AI
Creed
Death & life
Digital
6 min read

AI deadbots are no way to cope with grief

The data we leave in the cloud will haunt and deceive those we leave behind.

Graham is the Director of the Centre for Cultural Witness and a former Bishop of Kensington.

A tarnished humaniod robot rests its head to the side, its LED eyes look to the camera.
Nicholas Fuentes on Unsplash.

What happens to all your data when you die? Over the years, like most people, I've produced a huge number of documents, letters, photos, social media posts, recordings of my voice, all of which exist somewhere out there in the cloud (the digital, not the heavenly one). When I die, what will happen to it all? I can't imagine anyone taking the time to climb into my Dropbox folder or Instagram account and delete it all? Does all this stuff remain out there cluttering up cyberspace like defunct satellites orbiting the earth?  

The other day I came across one way it might have a future - the idea of ‘deadbots’. Apparently, AI has now developed to such an extent that it can simulate the personality, speech patterns and thoughts of a deceased person. In centuries past, most people did not leave behind much record of their existence. Maybe a small number of possessions, memories in the minds of those who knew them, perhaps a few letters. Now we leave behind a whole swathe of data about us. AI is now capable of taking all this data and creating a kind of animated avatar, representing the deceased person, known as a ‘deadbot’ or even more weirdly, a ‘griefbot’. 

You can feel the attraction. An organisation called ‘Project December’ promises to ‘simulate the dead’, offering a ghostly video centred around the words ‘it’s been so long: I miss you.’ For someone stricken with grief, wondering whether there's any future in life now that their loved one has gone, feeling the aching space in the double bed, breakfast alone, the silence where conversation once filled the air, the temptation to be able to continue to interact and talk with a version of the deceased might be irresistible. 

There is already a developing ripple of concern about this ‘digital afterlife industry’. A recent article in Aeon explored the ethical dilemmas. Researchers in Cambridge University have already called for the need for safety protocols against the social and psychological damage that such technology might cause. They focus on the potential for unscrupulous marketers to spam surviving family or friends with the message that they really need XXX because ‘it's what Jim would have wanted’. You can imagine the bereaved ending up being effectively haunted by the ‘deadbot’, and unable to deal with grief healthily. It can be hard to resist for those whose grief is all-consuming and persistent. 

Yet it's not just the financial dangers, the possibility of abuse that troubles me. It's the deception involved which seems to me to operate in at a number of ways. And it's theology that helps identify the problems.  

The offer of a disembodied, AI-generated replication of the person is a thin paltry offering, as dissatisfying as a Zoom call in place of a person-to-person encounter. 

An AI-generated representation of a deceased partner might provide an opportunity for conversation, but it can never replicate the person. One of the great heresies of our age (one we got from René Descartes back in the seventeenth century) is the utter dualism between body and soul. It is the idea that we have some kind of inner self, a disembodied soul or mind which exists quite separately from the body. We sometimes talk about bodies as things that we have rather than things that we are. The anthropology taught within the pages of the Bible, however, suggests we are not disembodied souls but embodied persons, so much so that after death, we don't dissipate like ethereal ‘software’ liberated from the ‘hardware’ of the body, but we are to be clothed with new resurrection bodies continuous with, but different from the ones that we possess right now. 

We learned about the importance of our bodies during the COVID pandemic. When we were reduced to communicating via endless Zoom calls, we realised that while they were better than nothing, they could not replicate the reality of face-to-face bodily communication. A Zoom call couldn't pick up the subtle messages of body language. We missed the importance of touch and even the occasional embrace. Our bodies are part of who we are. We are not souls that happen to temporarily inhabit a body, inner selves that are the really important bit of us, with the body an ancillary, malleable thing that we don't ultimately need. The offer of a disembodied, AI-generated replication of the person is a thin paltry offering, as dissatisfying as a virtual meeting in place of a person-to-person encounter. 

Another problem I have with deadbots, is that they fix a person in time, like a fossilised version of the person who once lived. AI can only work with what that person has left behind - the recordings, the documents, the data which they produced while they were alive. And yet a crucial part of being human is the capacity to develop and change. As life continues, we grow, we shift, our priorities change. Hopefully we learn greater wisdom. That is part of the point of conversation, that we learn things, it changes us in interaction with others. There is the possibility of spiritual development of maturity, of redemption. A deadbot cannot do that. It cannot be redeemed, it cannot be transformed, because it is, to quote U2, stuck in a moment, and you can’t get out of it.  

This is all of a piece with a general trajectory in our culture which is to deny the reality of death. For Christians, death is an intruder. Death - or at least the form in which we know it, that of loss, dereliction, sadness - was not part of the original plan. It doesn't belong here, and we long for the day when one day it will be banished for good. You don’t have to be a Christian to feel the pain of grief, but paradoxically it's only when you have a firm sense of hope that death is a defeated enemy, that you can take it seriously as a real enemy. Without that hope, all you can do is minimise it, pretend it doesn't really matter, hold funerals that try to be relentlessly cheerful, denying the inevitable sense of tragedy and loss that they were always meant to express.  

Deadbots are a feeble attempt to try to ignore the deep gulf that lies between us and the dead. In one of his parables, Jesus once depicted a conversation between the living and the dead:  

“between you and us a great chasm has been fixed, so that those who might want to pass from here to you cannot do so, and no one can cross from there to us.”  

Deadbots, like ‘direct cremations’, where the body is disposed without any funeral, denying the bereaved the chance to grieve, like the language around assisted dying that death is ‘nothing at all’ and therefore can be deliberately hastened, are an attempt to bridge that great chasm, which, this side of the resurrection, we cannot do. 

Deadbots in one sense are a testimony to our remarkable powers of invention. Yet they cannot ultimately get around our embodied nature, offer the possibility of redemption, or deal with the grim reality of death. They offer a pale imitation of the source of true hope - the resurrection of the body, the prospect of meeting our loved ones again, yet transformed and fulfilled in the presence of God, even if it means painful yet hopeful patience and waiting until that day. 

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