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Assisted dying
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Life & Death
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 anonymously authored 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 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. 

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Life & Death
4 min read

A covering of feathers for the terrors of the night

How to struggle with the burden of other people's suffering.
a pile of feathers.
Evie S. on Unsplash.

It’s one of the sad facts of life: that many of us at some point will see our parents get old and fade away. Sigh. It doesn’t matter how well prepared you are or how much you’ve thought about it before hand, the reality of a fragile mum or an exhausted dad can break your heart.  

I’ve talked to my parents about this for years here and there. We’ve done lots of joking about seeing them off with a pink pill in the sherry, or ‘it’ll be a pillow for you Pa, if you’re too annoying’ – type thing. But when they left after Sunday lunch a couple of weeks ago, I had to clutch my husband. He lost his own mother last year… we’re still fluttering around the gap she’s left in our family. And now there’s my beloved olds too, looking diminished and moth eaten and moving at crepuscular speed. Ask Dad how he is these days, and he says ‘Old, dear’, and won’t elaborate further. 

I can cope with this when it’s in short bursts. Visiting them for lunch or taking them out on a trip is OK and manageable, and there is still joy in family occasions. Mum’s birthday was full of love, even though she took all afternoon to open her cards and became hopelessly confused about who’d given her what.  

But staying with them… that’s hard. Seeing the dust thick over the spare room; worrying about just how long that bowl of leftovers has been in the fridge. I whip about as unobtrusively as I can, scrubbing the bottom of the washing up bowl or putting their jerseys in a wash. I don’t want to be annoying – they won’t accept help and I’m not going to push – but it makes me sad. In particular I hate that my mum is in constant pain from crumbling bones, and that dementia has stolen her mind. Also, that as a consequence, Dad is irritable with her; he who has always adored her so much. 

I could picture them vividly, the feathers, soft and heavy and beautifully patterned like an owl’s, and imagine I was peering out through them at Mum’s pain. 

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Since childhood, I have struggled with the burden of other people’s suffering. I sometimes wonder if I’m exaggerating when I think about how much I mind, but I don’t think I am. I can only manage if I’m really ready for it. With my counselling clients that takes the form of very firm boundaries, regular supervision, colleagues to talk to etc… but with family it’s much harder. It’s just your own naked, soft-bodied self-shrinking from all the nettles and thorns – like a hermit crab without a shell.  

So when I went down to Mum and Dad’s this time, I felt the need to prepare. ‘Put on the armour of light,’ St Paul says, which sounds just the thing. I hardly slept last time, tossing and wriggling through small-hour horrors with my neck hurting and a feeling of tears not being far away. What to arm myself with though? 

The answer came in the form of an ancient poem - Psalm 91. I was listening to a Premier Radio presenter who is a pastor – a big, tattooed fellow with rings in his nose and lip – and he said it was his main defence when his wife was diagnosed with cancer. So, I looked it up, and I loved it. It was all about how the Lord will cover you with his wings and keep you safe from the terrors that visit in the night and the pestilence that stalks by day, or words to that effect.  

Malcolm Guite (a poet and priest whose writing I love) says you have to treat Psalm 91 with care: it was the one Satan tempted Christ within the wilderness, challenging him to throw himself from the temple roof and God would send his angels to catch him (as it says in the psalm). It’s not to be taken literally, this psalm: you can’t deliberately put yourself in harm’s way and expect to be immune because you’re a Christian, like some of the vehement anti-vaxxers around the world who think faith alone will protect them from lethal diseases. But the message is that if you put your trust in God, he won’t let you be damaged in any important or lasting way by the evils of the world. 

I memorised as much of it as I could. And then when I woke in the night – inevitably – with the dread hovering over me, I kept thinking, ‘The Lord will cover thee with his feathers’. I could picture them vividly, the feathers, soft and heavy and beautifully patterned like an owl’s, and imagine I was peering out through them at Mum’s pain and muddliness and Dad’s frustration and my own fear. They were like malevolent ghosts drifting through the dark, menacing and cruel. But Mum and Dad and I, our actual selves, were curled up safely, warm and hidden with the great wings over us.  

And eventually, I was able to go back to sleep.