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
Easter
5 min read

I know who will be most affected by legalising assisted dying

Contemplating lent revives hard memories and raises fresh fears.

Ryan is an ordained Priest in the Church of England, currently serving in south London. 

A close up of a forehead bearing an ash cross marked on it.
Ahna Ziegler on Unsplash.

“What’s that - a face tattoo?” 

These were the words of one person as I walked past them on the streets on a recent Wednesday, with the ashes of last year’s burnt palm-branches placed across my forehead in the shape of the cross.  

The cross has been a symbol of hope for over two millennia; that even in the most painful of circumstances, darkness does not have the final say, including in death.  

As a society, we don’t really talk about death that much. Margot Robbie’s Barbie was the quintessential party-pooper when she pondered: 

 “do you guys ever think about dying?”. 

It’s no fun to dwell on death and dying, and for many of us, we put it off as long as we can. That all changed last year with the introduction of the assisted dying bill into the Houses of Parliament. Our national attention was, for a rare moment, captured by death.  

As a parish priest, I’ve seen the finality of burying someone into the ground. I’ve seen the sadness in the eyes of those trying to grieve. 

The words of Ash Wednesday, which remind us that we are ‘but dust, and to dust we shall return’ are echoed in the famous words that the priest recites in those last moments of burial, ‘ashes to ashes, dust to dust’. In that moment, amongst the bereaved, there is no escaping the inevitability of death. It is the ultimate statistic, 1 in 1 die. 

Whilst death is of course universal and will affect us all, the impact of this assisted dying bill could have consequences for some of the most vulnerable in society.  

As I reflect on my time as a Priest in East London, this is not abstract theory, but something I lived with each day. I served amongst a hugely diverse, vibrant, community in one of the poorest parts of the city. As I try to picture some the people I’ve walked alongside, I know it is these lives that will be most affected.  

One of the reasons I have concerns about the bill is the prospect of these people being coerced into ending their own lives prematurely, by a world that has already told them their lives are of little value. There are already huge disparities in access to the current provision of palliative care at the end of life, particularly amongst people of colour, the disabled and the poor.  

Of the 500,000 people who die each year, 100,000 do not access the care they need. This number is skewed towards ethnic minorities and those who come from poorer backgrounds.  

There is much confusion and misinformation about what end-of-life care even is. Research conducted by Marie Curie shows that 1 in 5 people from an ethnic minority background believe Palliative Care is actually Euthanasia.  

We only need to look at what has happened around the world when the ‘right to die’ becomes a duty to die. Even with the best of intentions, other jurisdictions show us that safeguards rapidly deteriorate and those who are already vulnerable become even more so.  

I worry that the way in which this bill is being handled - rushed through, little time being given to properly chew over the profound consequences it may have - reflects the wider way we view death. 

By trying to provide a ‘choice’ for a certain group of people, the consequence will be taking away real choice from those who already have little. 

Yet we know that for those who do access it, palliative care can be hugely effective in improving their quality of life, and for some, they can even outlive their prognosis. During Ash Wednesday’s service, I met an elderly gentleman who was diagnosed with stage four pancreatic cancer in 2019. He was told he had five months to live. He described every day of his six-year survival since as a ‘miracle’, his eyes filled with evident joy.  

Such a blessing stands in stark contrast to the lonely final days of my 96-year-old great grandmother. She was suddenly taken ill during the Covid-19 pandemic and was frantically rushed to a hospital. Amidst the chaos, exasperated by the restrictions against seeing family that were in place at the time, I distinctly remember confused conversations about placing her in a care home for her final days. It was clear she needed a lot of specialist attention, more than our family could provide ourselves.  As she was discharged to stay with our aunt, she never did reach that care home, as she died at home. She was buried in our local cemetery, with our family watching on Zoom.  

My final memory of my great-grandmother will be the FaceTime call we shared when she was taken to hospital, with the poor data connection and shaky picture. I am so grateful for the few family members who were able to be by her side when she died, but I’ve often wondered whether she fully received the care she actually needed during those final days, in the way she needed it.  

What my great-grandmother didn’t have a lot of at the end of her life was time.  

That’s also true for this bill. Concerns have been raised that only five hours of debate were given to this Bill in the chamber, comparatively short for a change in the law of this magnitude.  

I worry that the way in which this bill is being handled- rushed through, little time being given to properly chew over the profound consequences it may have- reflects the wider way we view death.  

Do we view death - and indeed the dying- as something to be shoved to one side, not spoken about in the hopes we can avoid its impact? Or do we view death as an important moment to review who and what matters most in life?  

Perhaps for some, the fact that Christians devote a period of 40 days to dwell on death may be one of the mysteries of faith. However, perhaps it’s not such a bad idea after all.  Death may bring with it fear, grief and pain and so we tend to avoid it. But do we risk missing out on much more? As we head into Easter, the cross still serves as a powerful reminder that, especially in death, Hope can be found, that Good has triumphed over evil, and Light shines even in the darkest of places.  

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