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Assisted dying
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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. 

Explainer
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Death & life
6 min read

Dying well: what is neglected needs to be put right

How each of us can prepare ourselves and those we leave behind.

Matthew is the author of Your Last Gift – Getting Your Affairs in Order.

A group of grieving friends with their hands on each others backs.
The Good Funeral Guide on Unsplash.

In their November 2023 Theos report Love, Grief and Hope: Emotional responses to death and dying in the UK, Madeline Pennington and Nathan Mladin produce the surprising finding that, over the past year, one quarter of Brits had thought about their own death at least once a week. They go on to consider related emotional responses, chiefly fear. But, however often we think about death (maybe never), what do we do to prepare for the certainty of it, when we are used to making all sorts of preparations for practically everything else in our lives? 

First, we can, without being morbid, live our lives in broad terms in the consciousness that we are mortal (and, if you will forgive me as a classicist for delving into Latin, living ‘sub specie aeternitatis’ which means ‘from the standpoint of eternity’). Second, there are things we can do in terms of getting our house in order, both for our own peace of mind and for the benefit of our loved ones and those we leave behind. This is both spiritually and materially, though I would want to argue as a Christian that the whole of life (whether in this world or in the next) combines both aspects.  

Having had quite a feisty and competitive brother/sister relationship (with not a little ribbing from her about my own faith), we came to enjoy the warmest possible sibling love for and appreciation of each other. 

My dear sister Debbie died aged just 49 in July 2005. She had telephoned me only eight months before to tell me of the grim diagnosis of stage 4 lung cancer, saying that there were two things she needed to sort out: her will and her relationship with God. I replied (as a Christian and as a private client lawyer) that we could sort both those out. I referred Debbie to a vicar I knew in a church round the corner from where she lived. She was a bit hesitant, saying that, having kept God at arm’s length for all her life, wasn’t it a bit presumptuous now to be knocking on the vicar’s door? I suggested that she should think of it from his point of view, in terms of job satisfaction: that after all was precisely what he was there to do, telling people about God and helping them to find a personal faith.   

So that’s just what she did, coming to that faith herself following time with the vicar, with me and with other friends, in the February. And she died as a self-proclaimed Christian five months later. For me, the most precious thing apart from knowing that she would be with Jesus forever was this: having had quite a feisty and competitive brother/sister relationship (with not a little ribbing from her about my own faith), we came to enjoy the warmest possible sibling love for and appreciation of each other. 

Second, my mother, whose ideas of Christianity were never terribly clear, though she was a very faithful listener of my sermons, came to faith (as I saw it) just 12 days before she died in May 2010. It was at a home communion given by one of the local clergy team that, as she received the bread and/or the wine (I forget which), a most powerful voice within my spirit told me that she had received Jesus. And that night, by way of confirmation, my wife Annie had a very clear dream of my mother (it had to be her, wearing her most distinctive pink kaftan) dancing at the foot of the Cross. 

We lived just five minutes from Mum and, again, my early evening visits to see her, to chat, to read from the Bible and to pray were somehow transformed. While I am not sure that she had the same clear consciousness of having moved from darkness to light as had Debbie, I was quite clear that she had – and noted in my prayers at her funeral that at the end she had received Jesus. 

Third is my very close friend Jim who died aged just 67 in November 2020: I had talked to him about the Christian faith on a number of occasions, but he simply didn’t want to know. Then just one month before he died, in a telephone conversation with him in hospital Jim asked me to explain it, from a position of dire physical need and wanting to hear. I didn’t know how ill he was and, having explained the essence of Christian belief in very simple terms, prayed with him over the telephone.   

As it happens, Jim survived another month at home, during which time I was able to visit him four times and (now having been ordained) give him and his Christian wife Judi Home Communion, as well as pointing him to and talking about Mark’s Gospel and praying with him. His new faith led to a new intensity in our friendship. Jim was quite clear about his new relationship with Jesus, seeing himself as the lost sheep, on which I preached at his funeral, before (as a profoundly moving experience) conducting his burial. 

None of us of course knows for sure what happens after death. But Christians are by God’s grace given this ‘sure and certain hope’ of an eternity to be spent with Christ in God’s new creation. And it’s the clear Christian message that that eternity starts now, when we come to faith.  There’s a new relationship with God in Christ and, which is my experience, with our brothers and sisters in Christ, especially precious when those folk are close to us anyway.   

And then of course, perhaps most importantly, what is broken needs to be put right. 

That’s the spiritual aspect.  What of the material – by which I mean all the practical ‘stuff’: those who are left behind having to sort out our possessions, Inheritance Tax where payable and a whole host of other things?  It is a subject touched on in the Bible, perhaps surprisingly.  Consider Paul writing to Timothy that a person should provide for their relatives and especially close family), which I take it would include post-death as well as lifetime provision.  And then supremely of course Jesus in providing for his dear mother by entrusting her to his beloved disciple John.                        

In this context, I can do no more than make a few pointers, which with other suggestions I develop in my book.   

There are what I call ‘The Three Essentials’: Lasting Powers of Attorney in case of mental incapacity (for both property & financial affairs and health & welfare), Wills (including the all-important choice of executors) and funeral arrangements. Just 44 per cent of UK adults have made a will. 

Then there’s a host of other things, including appointing guardians for any minor children, providing for dependent relatives and making arrangements for pets.   What about access to digital assets, for example?  Let alone dealing with things about the home. 

And then of course, perhaps most importantly, what is broken needs to be put right - relationships, where forgiveness could be sought or given.  And, more widely, are there people you want to spend more time with, things you want to do or places to visit? 

My suggestion is that dying well embraces first of all the peace which comes from the belief that Jesus has died the death my sins deserve and consequently a restored relationship with God our Heavenly Father; and second, making what practical arrangements we can in advance, to ease the stress of those we leave behind in sorting out our affairs.  

 

Matthew Hutton is the author of Your Last Gift – Getting Your Affairs in Order.