Assisted dying: in praise of being a burden

It's not a reason to end a life, it's the very possibility of our being human.

Jonathan Rowlands

Jonathan is a theology lecturer and Liverpool FC fan.

A younger hand holds a wrinkled older hand of someone in a bed.

A lot has been said already about assisted dying. In the raging bonfire of public discourse, there has been a lot of heat, but not a lot of light. But amid all the noise surrounding Parliament’s upcoming discussion around assisted dying, a recent conversation hosted by Prospect between Brenda Hale (former President of the Supreme Court) and Rowan Williams (former Archbishop of Canterbury) served as a reminder that we are, despite everything, still capable of having meaningful and fruitful discussion about even the most divisive of issues.

The conversation is earnest and hard-won throughout; both Hale and Williams each push and probe the other for more detail, more nuance, more outworking of implications. And yet their tenor remains respectful. There is no cheap point scoring, no trite comments or easy aphorisms. These are two people working to understand the other, in full recognition of the gravity of the topic.

One particular moment, however, was frankly spine-chilling. As the conversation progresses, Hale is asked the following: “How do you deal with the pressure questions – pressure from family or financial pressures? What safeguards can you build in?” Her response – in full, for context – is as follows:

“Well, you can build in the safeguards that the decision must be made without undue influence, coercion, duress or fraud. But in the end, it’s a matter of evidence, isn’t it? One of the things I find most difficult is that I don’t think it’s necessarily irrational for somebody to take into account the suffering their suffering is causing to the people dear to them, or the burden that looking after them is placing upon the whole community.

I wouldn’t call that “undue influence”, but it’s one of the questions I find most difficult about all of this. You know, obviously there’s duress, there’s financial abuse, there are all of those sorts of things that have got to be checked against, and there ought to be objective evidence of absence of that. But when it comes down to somebody thinking, “I don’t want to be a cause of others suffering,” that seems to me to be a reasonable thing for somebody to take into account.”

The idea that my dependency or burdensomeness might factor into decisions about whether I continue to live, seems to me to be contrary to the very notion of the Christian message. Let me explain why.

We are made to be a burden, then. To depend on others, to be burdensome to them, is to be human.

We are, whether we like it or not, now rapidly approaching Christmas. At this time of year, Christians celebrate the birth of Jesus; the divine Son of God made flesh and born of a virgin. As the divine Son of God, Jesus lived the perfect human life of joy, grace, and faithfulness; the kind of life I can only aspire to.

Because of this, as a Christian, I look to Jesus’ perfect life of faithfulness as a model for what a truly healthy human life looks like. And I am often surprised by what I find there. For example, it turns out true human flourishing does not involve getting married, having sex, or having children; Jesus’ perfect life of flourishing featured none of these things.

But crucially, Jesus’ perfect life often involved depending upon others; upon being a burden to those around him. As an itinerant travelling teacher, Jesus relied on the financial support of his followers to make his ministry possible. He relied on being made and given food to eat, and a roof to sleep under. He was far from self-sufficient. Rather, he gladly made himself a burden to others in service of his ministry.

But more than this, we often overlook the radical significance of the Christian claim that, at Christmas, we celebrate God’s becoming a baby. For the first years of his perfect life, Jesus was entirely – entirely – dependent upon his parents for all his needs. Here we see God, in the person of Jesus, depending upon Mary and Joseph to feed him, to clothe him, to cuddle him, to clean up his sick and his excrement. This is what human flourishing looks like.

This is mirrored at his glorious death, too. Prior to his arrest, Jesus asked his friends for support; to stay awake while he prays for comfort. The Gospels go on to tell us that, having been mercilessly tortured, beaten, stripped, and interrogated, Jesus had his cross carried by a man named Simon of Cyrene. After his death, having no tomb of his own, Jesus was buried in the family tomb of his follower Joseph of Arimathea. And this, too, is what human flourishing looks like.

Throughout his entire life Jesus lived the perfect life of human joy and faithfulness. And this often involved depending upon others and being a burden to them in every way conceivable. We are made to be a burden, then. To depend on others, to be burdensome to them, is to be human.

To think, then, with Baroness Hale, that my dependency and burdensomeness upon others might somehow serve to underwrite a decision to end my life, is fraught with difficulty for me as a Christian. I simply cannot reconcile her words with the life I see Jesus living in the Bible: a life of joyful, difficult burdensomeness.

There may be many other reasons why people decide they want their lives to end. But a sense of burdening others ought not to be one of them. Being a burden is not a reason to bring one’s life to an end, because it is the very possibility of our being human in the first place. To need others, to place ourselves into their care, does not make us less human, it makes us more human. And therein lies its glory.

Article

Assisted dying

Comment

Death & life

Politics

23 May 2024

5 min read

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.