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. 

Article
Assisted dying
Care
Comment
Death & life
Suffering
5 min read

Why end of life agony is not a good reason to allow death on demand

Assisted dying and the unintended consequences of compassion.

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

A open hand hold a pill.
Towfiqu Barbhuiya on Unsplash.

Those advocating Assisted Dying really have only one strong argument on their side – the argument from compassion. People who have seen relatives dying in extreme pain and discomfort understandably want to avoid that scenario. Surely the best way is to allow assisted dying as an early way out for such people to avoid the agony that such a death involves?  

Now it’s a powerful argument. To be honest I can’t say what I would feel if I faced such a death, or if I had to watch a loved one go through such an ordeal. All the same, there are good reasons to hold back from legalising assisted dying even in the face of distress at the prospect of enduring or having to watch a painful and agonising death.  

In any legislation, you have to bear in mind unintended consequences. A law may benefit one particular group, but have knock-on effects for another group, or wider social implications that are profoundly harmful. Few laws benefit everyone, so lawmakers have to make difficult decisions balancing the rights and benefits of different groups of people. 

It feels odd to be citing percentages and numbers faced with something so elemental and personal and death and suffering, but it is estimated that around two per cent of us will die in extreme pain and discomfort. Add in the 'safeguards' this bill proposes (a person must be suffering from a terminal disease with fewer than six months to live, capable of making such a decision, with two doctors and a judge to approve it) and the number of people this directly affects becomes really quite small. Much as we all sympathise and feel the force of stories of agonising suffering - and of course, every individual matters - to put it bluntly, is it right to entertain the knock-on effects on other groups in society and to make such a fundamental shift in our moral landscape, for the sake of the small number of us who will face this dreadful prospect? Reading the personal stories of those who have endured extreme pain as they approached death, or those who have to watch over ones do so is heart-rending - yet are they enough on their own to sanction a change to the law? 

Much has been made of the subtle pressure put upon elderly or disabled people to end it all, to stop being a burden on others. I have argued elsewhere on Seen and Unseen that that numerous elderly people will feel a moral obligation to safeguard the family inheritance by choosing an early death rather than spend the family fortune on end of life care, or turning their kids into carers for their elderly parents. Individual choice for those who face end of life pain unintentionally  lands an unenviable and unfair choice on many more vulnerable people in our society. Giles Fraser describes the indirect pressure well: 

“You can say “think of the children” with the tiniest inflection of the voice, make the subtlest of reference to money worries. We communicate with each other, often most powerfully, through almost imperceptible gestures of body language and facial expression. No legal safeguard on earth can detect such subliminal messaging.” 

There is also plenty of testimony that suggests that even with constant pain, life is still worth living. Michelle Anna-Moffatt writes movingly  of her brush with assisted suicide and why she pulled back from it, despite living life in constant pain.  

Once we have blurred the line between a carer offering a drink to relieve thirst and effectively killing them, a moral line has been crossed that should make us shudder. 

Despite the safeguards mentioned above, the move towards death on the NHS is bound to lead to a slippery slope – extending the right to die to wider groups with lesser obvious needs. As I wrote in The Times recently, given the grounds on which the case for change is being made – the priority of individual choice – there are no logical grounds for denying the right to die of anyone who chooses that option, regardless of their reasons. If a teenager going through a bout of depression, or a homeless person who cannot see a way out of their situation chooses to end it all, and their choice is absolute, on what grounds could we stop them? Once we have based our ethics on this territory, the slippery slope is not just likely, it is inevitable.  

Then there is the radical shift to our moral landscape. A disabled campaigner argues that asking for someone to help her to die “is no different for me than asking my caregiver to help me on the toilet, or to give me a shower, or a drink, or to help me to eat.” Sorry - but it is different, and we know it. Once we have blurred the line between a carer offering a drink to relieve thirst and effectively killing them, a moral line has been crossed that should make us shudder.  

In Canada, many doctors refuse, or don’t have time to administer the fatal dose so companies have sprung up, offering ‘medical professionals’ to come round with the syringe to finish you off. In other words, companies make money out of killing people. It is the commodification of death. When we have got to that point, you know we have wandered from the path somewhere.  

You would have to be stony-hearted indeed not to feel the force of the argument to avoid pain-filled deaths. Yet is a change to benefit such people worth the radical shift of moral value, the knock-on effects on vulnerable people who will come under pressure to die before their time, the move towards death on demand?  

Surely there are better ways to approach this? Doctors can decide to cease treatment to enable a natural death to take its course, or increase painkillers that will may hasten death - that is humane and falls on the right side of the line of treatment as it is done primarily to relieve pain, not to kill. Christian faith does not argue that life is to be preserved at any cost – our belief in martyrdom gives the lie to that. More importantly, a renewed effort to invest in palliative care and improved anaesthetics will surely reduce such deaths in the longer term. These approaches are surely much wiser and less impactful on the large numbers of vulnerable people in our society than the drastic step of legalising killing on the NHS.