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
Ethics
6 min read

It's a dreadful thing when we regard the disabled, the dependent, and the different as disposable

A MND sufferer reflects on the historic vote to legalise assisted dying
A crowded House of Commons awaits a vote.
MPs await the result.
Parliament TV.

I can’t say I’m surprised, but I am disappointed. The euthanasia juggernaut has been gathering momentum throughout the western world. In this country it appeared as the Voluntary Euthanasia Society, to be later rebranded as the richly endowed Dignity in Dying. It’s been beavering away for decades, with well publicised personal stories and legal cases which have been very effective in persuading general opinion that dying is frequently nasty and that we should have the right to choose when and how to die. That organisation resisted using the term ‘suicide’, which is what they advocate, realising that it opens up the accusation of devaluing life. So, I’m not surprised that MPs have, after an impassioned debate, by a narrow majority, eventually given way to the pressure.

A fortnight ago, I had my annual check-up at the motor neurone disorder clinic and subsequently received the GP letter.

“Date seen 02/06/2025…  Diagnosis (this visit) Primary Lateral Sclerosis…  Symptom onset 2000”.

I well remember the year 2000, my voice deteriorating, my balance starting to fail me, resulting finally a year later in the consultant’s verdict, “You have a motor neurone disorder.”

I knew what that meant as at the time Diane Pretty, backed and publicised by the Voluntary Euthanasia Society, was fighting through the courts as far as the European Court of Human Rights for the right for her husband to take her to commit suicide in Switzerland in the Dignitas “clinic”. It was a frightening time to receive an MND diagnosis, and it still is today. The normal progression is both swift and relentless. However, the Motor Neurone Disease Association does say “in the majority of cases, death with MND is peaceful and dignified”.

At that time I could have been depressed; I could have known how much care I would need, how much it might eat into our savings; I could have feared the physical and emotional toll it would take on my wife; I could have been desperate about the future. Certainly I was vulnerable. Fortunately, I was of an optimistic nature and had plenty of reasons for living.

But it could easily have been otherwise. I might well have panicked and opted for a doctor to help me die, if the law debated in the Commons today was in effect. Then I wouldn’t have seen two sons getting married nor grandchildren being born and growing up. I would have missed out on twenty years of an increasingly restricted but paradoxically fulfilled life.

Of course you might argue that I’m ‘lucky’ to have, as became clear over the years, my exceptionally rare and slow form of MND, but I wasn’t to know that, as indeed none of us do despite our doctors’ best predictions. Indeed I am lucky to be alive.

However it was my experience that brought me face to face with the fact of my own mortality and the issue of assisted dying. There seemed to me to be four main drivers. First, the desire for autonomy; second, the insistence of independence; third, a sort of compassion, and fourth, finance. There were two further factors: fear of death and fear of being “a burden”.

Autonomy

It’s a modern western concept that humans are by nature autonomous beings, meaning that choice is an inalienable right. I once co-wrote a book with the title, I Choose Everything, based on a quote of Therèse of Lisieux. It was from a childhood incident, but it did not mean she reserved the right for total autonomy, but rather the opposite. As she later wrote, “I fear only one thing: to keep my own will; so take it, for ‘I choose all!’ that you (God) will!”

Absolute choice is not a virtue. Choosing where to drive your car is not a virtue as it can endanger other road users. There are many limitations on freedom or taboos that protect others in a society. Taking someone’s life directly or indirectly is a universal one. Individuals submitting to a higher authority holds a community and a nation together.  

Independence

Another related modern heresy is the ideal of independence. How utterly fatuous this is! None of us is born independent. We’re born relational. All of our lives we are interdependent. Being cared for is not to be lacking in dignity. Being 100% dependent does not deprive someone of their human dignity. Even the most disabled person is a human being made in the image of God. It is a dreadful thing when a society regards the disabled, the dependent, the different, the mentally deficient and the declining as inferior and potentially disposable. Of course the advocates of the Bill would vehemently deny that they or it implied any such thing. Yet the history of the twentieth century bears witness to how subtly a society can be seduced by the pernicious philosophy of eugenics.

Compassion

It is a modern paradox that medical advances have contributed to the illusion that death is to be feared. Yes, death has always been the last enemy and, yes, we hope it will be peaceful. But we shall all die. Contrary to received wisdom, the compassionate response to that fact of life is not to “put someone out of their misery”; compassion (literally suffering with) means to be with them in their suffering. This is what good palliative care provides, making the end of life dignified, worth living and even pain free.

As former Prime Minister Gordon Brown pertinently asked, “When only a small fraction of the population are expected to choose assisted dying, would it not be better to focus all our energies on improving all-round hospice care to reach everyone in need of end-of-life support?”

Finance

Of course palliative care costs more than facilitating patients to take their own lives. According to the Daily Mail “Legalising assisted dying would save the taxpayer £10million in NHS costs in its first year, rising to £60million after a decade, according to grim new estimates published by the government.” The estimates are indeed grim, but also attractive to politicians straining to balance the national budget. Yet they raise the fundamental question: do we want to live in a society which values money over life?

Which is the most fundamental of all the issues: the sanctity of life has been a core principle central to all the Abrahamic faiths, which undergird our culture and way of life. In the words of Job on hearing of the death of all his children, “The Lord gave and the Lord has taken away.” The start and end of life are not ours to determine. We lack the wisdom of God.

Apparently the majority of our parliamentarians have decided to place that prerogative into the hands of suggestible and distinctly fallible humans beings. We or our children shall, I fear, reap the whirlwind.

As an afterthought I have a number of friends who disagree with me, often after personal experience of watching a loved one die. I sympathise and I suppose that I must be glad for them that the MPs have represented their wishes. And I would never condemn them if they decided to choose the route of assisted dying for themselves. I hope they won’t have to.

Meanwhile I trust that, when the Bill comes to the upper house, their Lordships will fulfil their function of revising it wisely and effectively. They certainly have relevant expertise, for example in the field of palliative care - which is in danger of being squeezed following this bill.

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