The careless conflation of independence, autonomy and dignity

As Jersey begins to legalise assisted dying, there’s keyword confusion.

Henna Cundill

Henna is a researcher with the Centre for Autism and Theology at the University of Aberdeen.

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.

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Assisted dying

Comment

Culture

Politics

3 December 2024

5 min read

The assisted dying debate revealed the real role of Parliament

MPs from areas where people are vulnerable and at risk were more sensitive to the dangers.

M. Ciftci

Mehmet Ciftci has a PhD in political theology from the University of Oxford. His research focuses on bioethics, faith and politics.

An MP stands and speaks in a parliamentary debate.

MP Diane Abbott speaks in the debate.

Parliament TV.

What would be the effect of allowing assisted suicide for those ‘people who lack agency, the people who know what it is to be excluded from power and to have decisions made for them’, asked Danny Kruger MP, as he wrapped up his speech? ‘What are the safeguards for them? Let me tell the House: we are the safeguard—this place; this Parliament; you and me. We are the people who protect the most vulnerable in society from harm, yet we stand on the brink of abandoning that role.’

His words capture an important aspect of Friday’s debate: what is the point of Parliament? Do MPs meet to turn public opinion polls into policies? If the majority are in favour of something, do MPs have nothing left to do but to follow the public and sort out the fine details? We might instinctively say ‘Yes!’ It seems right and democratic to treat those whom we elect as people we select and send to do our bidding. And the polls do seem to show the majority of people supporting assisted suicide, at least in principle – although there are good reasons to be sceptical about those figures and about the conclusions drawn from them.

But there are numerous times when the majority are known to be in favour of something but politicians refuse to endorse it. Polls repeatedly show that a majority are in favour of reintroducing the death penalty. Why might it be right for MPs sometimes to ignore what the purported majority thinks and to use their own judgement?

Because Parliament is not just a debating chamber.

An older way of referring to it was to call it the ‘High Court of Parliament’ because ‘parliament, classically, was where individuals could seek the redress of grievances through their representatives,’ as law lecturer Dr Robert Craig writes. It performed its function admirably in response to the Horizon scandal: a legitimate grievance was brought to its attention, and it responded to redress the wrongs done to the sub-postmasters by passing a law to ‘overturn a series of judgments that could only have been obtained, and were only obtained, by a toxic, captured and wilfully blind corporate culture’.

Friday’s debate featured many MPs who understood what they were there to do. They acknowledged the ‘terrible plight of the people who are begging us for this new law’ as Danny Kruger said. But they also spoke up for those who were in danger of being harmed and wronged by the bill: the disabled and the dying, and all the vulnerable who were not there to speak on their own behalf.

Many echoed the concerns expressed by Diane Abbott about coercion: ‘Robust safeguards for the sick and dying are vital to protect them from predatory relatives, to protect them from the state and, above all, to protect them from themselves. There will be those who say to themselves that they do not want to be a burden. … Others will worry about assets they had hoped to leave for their grandchildren being eroded by the cost of care. There will even be a handful who will think they should not be taking up a hospital bed.’ And evidence of coercion is hard to find and trace: ‘Coercion in the family context can be about not what you say but what you do not say—the long, meaningful pause.’

An analysis shared on X by law lecturer Philip Murray found an association between the level of deprivation in a constituency and how likely a Labour MP was to vote against the bill. He also shared figures showing that 2/3 of MPs from ethnic minorities voted against it. In other words, MPs from areas where people are vulnerable and at risk were more sensitive to the dangers of helping people to kill themselves.

The second reading of the bill on Friday was a crucial moment for them to decide whether the bill would fix an injustice or whether it would itself cause harm.

But it seems that many MPs did not appreciate what the debate was about or what they had gathered to do. Layla Moran MP said: ‘The media are asking all of us, “Are you for or against the Bill?”, but I urge hon. Members to think about the question differently. The question I will be answering today is, “Do I want to keep talking about the issues in the Bill?”’ But James Cleverly MP intervened: “she is misrepresenting what we are doing at this point. We are speaking about the specifics of this Bill: this is not a general debate or a theoretical discussion, but about the specifics of the Bill.” He was right to be impatient. Unlike the Oxford Union, the vote has consequences. Parliamentarians are not there merely to debate. As the term ‘High Court of Parliament’ suggests, when MPs (either on their own initiative or as a government) propose bills, what they are often doing is conveying a plea to redress some grievance, and their debates are to decide whether to respond by making laws to grant justice to the wronged.

The second reading of the bill on Friday was a crucial moment for them to decide whether the bill would fix an injustice or whether it would itself cause harm, because the scrutiny that the bill will undergo in the following stages is not likely to be as rigorous as with government bills. As a Private Member’s Bill, the assisted dying proposal is free to be scrutinised by a committee selected by the MP who has proposed the bill, i.e. Kim Leadbeater. When the bill reaches the stage for a final vote in the Commons at the third reading, no further amendments can be made and the time for debate is likely to be short.

It is rare but bills are sometimes defeated at the third reading. With eighteen abstentions on Friday and at least thirty-six MPs claiming they might change their minds later, there is still hope.

Each sitting of the Commons begins every day with a prayer by the Speaker’s Chaplain, who prays that MPs ‘may they never lead the nation wrongly through love of power, desire to please, or unworthy ideals but laying aside all private interests and prejudices, keep in mind their responsibility to seek to improve the condition of all mankind.’

We can only hope and pray that at their next opportunity, MP will consider this bill in light of their responsibilities as the country’s High Court, charged with protecting the most vulnerable in society from harm.