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
Comment
Mental Health
6 min read

No, it is not your life to dispose of

What could not be said about the assisted dying debate

Steve is the former vicar of St Matthew's Oxford.

Empty bus seats are lit in dark neon colours.
Vy Tran on Unsplash.

It is 1979.  I am aged 23 and have been in great mental and emotional anguish and pain for years. I am on a pointless journey, on Greyhound busses, from the East coast of America to the West, and am presently sitting in a parked bus just outside a city in Arizona; the powerful engine idles as we wait for departure time, giving a gentle to-and-fro rocking motion to the bus.  I have not eaten for days, am unspeakably tired of my life, and have made a written list of possible ways to end it.   

But not on that list is one possibility I have not previously considered, but which is now before me.  As I look out to my right, up into the Arizona desert hills, I realise that here is an option which perfectly fits with my desire, not so much to do away violently with myself, as simply to drift into a passive oblivion; I realise  that I could simply rise from my seat right now, get off the bus, stumble off into the desert hills, lie down, and wait to die.  I need not shoot or poison myself after all.  I know I can do this, and fairly easily; to die will take time, but no matter.  No-one knows where I am, no-one will know I am missing, no-one will come looking for me, and probably no-one will find me.  It is suddenly an immensely attractive prospect, and I am seconds away from rising up from my seat...  

There is one thing, one thing only, that makes me hesitate; it is what other people would call ‘a religious belief’, but to me it is simply a truth. 

It is this; I am absolutely sure that there is a God.  And suddenly there is something grimly, darkly humorous even, in what I thus believe will follow my death; I will find myself, not in peaceful oblivion, but in the presence of God. I will, as they say, ‘meet my Maker’.  And what then will I say to God?  I will say: “Apologies: I could not go on, there was no other way out for me”.   But what, I reason, if God were then to say: “You are wrong. There was a way forward. Look: you could have stayed on the bus, and had you done so, let me show you how your earthly future would have panned out…”   And I will listen, and I will watch, as the film rolls on, showing me an alternative future.   But of course, by then it would be too late… 

And suddenly, sitting on that bus, in a moment of cold clarity, I realise, with a kind of desolate logic, how I am caught.  In a very real sense, my belief in God my Creator means that I am not in fact ‘free’ to dispose of myself; more, that what I refer to so glibly as ‘myself’ is not in fact MY self.  The bus ticket in my pocket may be ‘my’ ticket, my rucksack ‘my’ rucksack, but my life is not after all my possession, mine to dispose of; it is a loan, a gift, from a Giver, to Whom I am responsible, answerable… 

I remain in my seat.  The bus continues its gentle rocking motion a while longer.  The driver gives his familiar 1970s Greyhound driver’s recitation, the various admonitions and prohibitions I have heard so many times as I have crossed America, I could give the speech myself (ending with the words ‘and no marijuana’, which always raises a smile) – and the bus pulls out onto the freeway.  I look back over my shoulder at the desert hills as they recede, and feel I am leaving more than the desert hills behind; I am still in deep pain, but know I have left a possibility behind me, for good.  Months later I will reflect on this moment and realise with a smile that the name of the city where I had put death behind me by not rising was Phoenix. 

And so my journey has continued – on, in due time, to a return to England, to a measure of healing, to getting ordained as an Anglican priest, to thirty-four years of Church ministry, to marriage to a very remarkable woman, to fatherhood of two children - and, at some future moment, to my own death: all in God’s time. 

How shoddy, shrunken and lonely, is our much vaunted and trumpeted vision of the autonomous individual. 

The word ‘God’ was probably used very little, if at all, in the MPs debate on assisted suicide - and this debate has really been about assisted suicide, not ‘assisted dying’, given that people will be given drugs to self-administer. Even the Christian MPs who spoke, did not mention God, as they knew what could be said, and what could not, in order for them to be heard at all.  The public arguments for, and against, the legalisation of assisted suicide have almost without exception had to be premised on one agreed assumption, apparently the only one now permissible in a post-Christian, liberal humanist, agnostic/atheist society: the assumption that my life is mine.  The arguments used for assisted suicide resolve down to: “It is my life: I should be allowed to decide when to end it”.  Most of the arguments used against resolve down to: “Yes, of course, granted, agreed, it is your life: but there may be unintended consequences for others in allowing you to end it, others may feel obliged to end their lives”, etc.   At no point could anyone say, as I so passionately would claim: “No, it is not your life to dispose of”; there is now, it seems, no public place for the apostle Paul’s blunt statement in his letter to the Church in Corinth: ‘You are not your own.’ 

Yet this is now one of the most fundamental beliefs of ‘my’ life: and I have found it to be totally liberating and beautiful.  I think of those glorious sculptures on the outer walls of Chartres Cathedral, including the representation of the creation of Adam, presented as emerging from the very mind of God.  I think of the glory of man and woman made in God’s image as stewards of creation.  I think of the extraordinary wonder of the Incarnation, of God embodied in Christ.  I think of the sufferings of Christ on the cross; and I think, yes, of course I think, of the sufferings of my fellow men and women and children, and of my own sufferings, and of the call to me to shoulder the burden, both of living, and of dying, in God’s time.   

And, alas, I think I also see something of how shrivelled, how wizened in comparison, how shoddy, shrunken and lonely, is our much vaunted and trumpeted vision of the autonomous individual – “my life, my rights, my body, my choice” - in the dominant contemporary Western mindset, eating away steadily like a corrosive acid any wider conception of community and the social institutions that enshrine it, and any sense of a deeper accountability to God. 

Where will the current assisted suicide decision ultimately lead?  What is the destination?  It is difficult to predict, but the signs from other countries who have gone down this road are not good.   

But what do I know?  Do I have answers to all the questions around assisted suicide?  I confess I do not. But one thing has become clearer to me: I am on a very different journey from the one my nation is travelling now.