Article

Assisted dying

Comment

Life & Death

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 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.

Review

Character

Comment

Digital

6 May 2024

1 min read

Re-enchanting the anxious generation

The future doesn’t have to be horrible.

Krish Kandiah

Krish is a social entrepreneur partnering across civil society, faith communities, government and philanthropy. He founded The Sanctuary Foundation.

Two teenager lean against a rail, arms crossed, and laugh together.

LaShawn Dobbs on Unsplash.

I meet many anxious people as I wait for meetings in the Palace Westminster, but one in particular stands out. As I was queueing to get through security, a breathless American man rushed over asking if he was in the right place to meet the Minister of State for Universities. Once I had reassured him that he was, and he had caught his breath, I asked him where he was from and what he did for a job. He told me he was a social psychologist from New York.

Funnily enough, the night before, I had been reading a book by a social psychologist from New York. I asked the man if he had come across the author, Jonathan Haidt. He replied with a smile: “I am Jonathan Haidt.”

I chuckle when I remember that chance encounter, especially considering the title of his latest book – The Anxious Generation. The book tackles a much more serious topic than queueing nerves. It claims to show, in the words of the subtitle: “How the Great Rewiring of Childhood is Causing an Epidemic of Mental Illness”.

The Anxious Generation is a tightly argued plea to parents and educators for a radical change in the way that young people are allowed to engage with digital technology in general and social media in particular.

It follows the line of thought he began in his book The Coddling of the American Mind which argued that ‘helicopter parenting’ has led to such a fragility in young adults that universities are no longer places of open and free dialogue, but somewhere young people feel the need to be protected from ideas they disagree with. That problem was what Haidt was preparing to discuss with the Minister when we met outside Parliament.

“Embracing all this is a desire to maintain and hand on to our children an earth that offers genuine possibilities of flourishing.”

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The Anxious Generation makes a compelling case for the way we are failing a generation of children. It likens the social media world to another planet that we are all happily sending our children off to without first learning about or checking any of the risks linked with the potentially toxic environment. It concludes that as much as we are overprotecting our children in the physical world, we are under-protecting them in the digital world, thereby complicit in the resulting tidal wave of mental health disorders.

Haidt writes:

“Are screen-based experiences less valuable than real-life flesh-and-blood experiences? When we’re talking about children whose brains evolved to expect certain kinds of experiences at certain ages, yes. A resounding yes.”

Haidt argues that what children need is less screen time and more unsupervised play. Some might call this the re-enchantment of childhood– a rediscovery of wonder, and simple emotional connections with freedom, food, imagination, curiosity, those around them and the great outdoors. Perhaps there is healthy therapy to be found in this re-enchantment through the sharing of art, poetry, and fantasy. Maybe a rediscovery of faith and hope can help to bring healing.

Mary Grey, Emeritus Professor of Theology at the University of Wales in Lampeter, describes re-enchantment like this:

“The market’s language of desire must be replaced by reflecting what we really long for, like satisfying relationships and intimacy, meaningful communities where our values are shared, with working conditions that do not create an unbearable level of stress, enough income to cover basic and leisure needs, and planning for the future. Embracing all this is a desire to maintain and hand on to our children an earth that offers genuine possibilities of flourishing. … This is not an invitation to exchange reality for Magic Kingdoms, but to become embodied kinships of women, men, children and earth creatures in a re-imagined and transformed world of sustainable earth communities of healing and hope.”

The re-enchantment of childhood is an attractive theory. I often find myself comparing my children’s childhood with that of my own. I’m sure I played more in the garden than they do, climbed more trees, cycled more round the block, round the town, and later round the county in my spare time. I remember as a teenager getting on a bus to travel from Brighton to Durham without either parents or phones. Around the same time, I travelled to Tbilisi, Georgia with just a backpack, a map, a couple of friends and quite a lot of self-confidence. I wish that my children could experience some of the pleasures that come with fixing a bike or looking up at the stars or browsing the library to find answers, instead of just googling.

Yet, at the same time, if my children were making their way to Durham or Tbilisi today, I would certainly make sure they had plenty of charge on their phone and all the necessary mobile data roaming rights, and I would probably WhatsApp them regularly until they arrived safely at their destination.

Haidt presents a perfect story, one that explains all the evidence. He doesn’t mention anything that might challenge it, or anything that the doesn’t quite fit.

Haidt’s book touches a nerve. Not just because of my own contradictory feelings as a parent, but because of the shocking statistics that reflect the wider state of our nation’s children. With waiting lists for Child and Adolescent Mental Health Services at a record high, a 47 per cent increase in young people being treated for eating disorders compared to pre-pandemic, and an enormous leap in prevalence of probable mental disorder from one in nine children (in England aged 8-25 years old in 2017) to one in five (similar cohort in 2023), the mental health of the next generation is rightly highly concerning.

The blame has been levelled in many different directions: COVID lockdowns, school league tables, excessive homework, helicopter parenting, screen time, and general disenchantment in society at large. Some even say the increase is directly related to the increase in public discussion and awareness about mental health disorders.

For Haidt it is social media that is public mental health enemy number one. However, he does admit he is not a specialist in children’s mental health, child psychology or clinical psychology. This has led to some criticism about his conclusions. Professor Candice L. Odgers, the Associate Dean for research into psychological science and informatics at the University of California challenges head on the central argument of Haidt’s book. She claims:

“...the book’s repeated suggestion that digital technologies are rewiring our children’s brains and causing an epidemic of mental illness is not supported by science. Worse, the bold proposal that social media is to blame might distract us from effectively responding to the real causes of the current mental health crisis in young people.”

Similarly Henna Cundill, a researcher with the centre for autism and theology at the University of Aberdeen, wrote last week in an article for Seen and Unseen:

“From a scientific perspective, the argument is a barrage of statistics, arranged to the tune of ‘correlation equals causation’. “

Cundill and Professor Odgers are right to be sceptical. Sometimes we let our commitment to a story shape the way that we read the evidence. If there’s one thing I remember from A- level statistics it is that causation and correlation should not be confused. In his bid to add urgency and cogency to his argument, Haidt presents a perfect story, one that explains all the evidence. He doesn’t mention anything that might challenge it, or anything that the doesn’t quite fit. It is not a scientific treatise - which is both the book’s strength and its weakness.

Nevertheless, many of the recommendations Haidt suggests are wise and helpful. Even Professor Odgers, to some extent, agrees.

“Many of Haidt’s solutions for parents, adolescents, educators and big technology firms are reasonable, including stricter content-moderation policies and requiring companies to take user age into account when designing platforms and algorithms. Others, such as age-based restrictions and bans on mobile devices, are unlikely to be effective in practice — or worse, could backfire given what we know about adolescent behaviour.”

Therein lies the issue. Because of the lack of evidence for the causes, all we are left with – even from the experts – is what may or may not be likely to be effective in practice.

I wonder if this paucity of robust scientific evidence stems from the fact that the issues facing the next generation are even more complex than we could ever imagine.

The truth is that hype, hysteria and horror are more likely to gain traction than humdrum and happy medium.

Every generation is different from the last. My own youth in the UK in the late 1980s when I became part of the video games and micro-computers subculture was just as much a mystery to my parents and teachers. My generation’s problems were blamed on everything from the microwave to Mrs Thatcher to the milk that we drank following the disaster at Chernobyl.

It seems to me too simplistic to demonise the technology. It’s an easy sell, after all. In fact, whenever there is a major technical shift, horror stories are created by those who believe the dangers outweigh the benefits. Mary Shelley’s Frankenstein seems to be a reaction to the industrial revolution. The nuclear threat led to movies about Godzilla and 60-foot-tall Amazonian women. The advent of the internet brought us the Terminator films.

The truth is that hype, hysteria and horror are more likely to gain traction than humdrum and happy medium. Yet, despite the many and serious problems, the rise of new technologies, even social media, also have much to offer, and they are not going away soon. Instead of demonising new technology as the problem, perhaps we need to find ways to turn it into the solution.

And perhaps there are glimmers of hope. I like the fact that my children are connected to the wider world, that they know people and languages from more diverse places than I ever did. I like that they know what is going on in the world way before the 9 o’clock news. I like the fact that they are on the cutting edge of advancements I will never experience in my lifetime. I like the fact that they can get their homework checked by AI, that they don’t need to phone me up every time they want to try a new recipe, that we can grumble together about the football match in real time even when we are on different sides of the world. I like that they can browse the Bible or listen to podcasts about history while they are waiting at a bus stop. I like the fact that they have libraries of books at their fingertips, that they can disappear into fantasy worlds with a swipe and don’t have to spend hours at the job centre when they need to find work. And I love the fact that my children and their friends are rediscovering board games, crochet, embroidery and hiking and taking them to a whole new level because they are learning these crafts from experts around the world.

I sincerely appreciate that Jonathan Haidt cares about the real and desperate problem of youth mental health. His book adds weight to the pleas of those of us advocating for urgent investment into this area. It reminds us of the world beyond the digital borders and it gives us hope that the re-enchantment of childhood is not impossible.

However, the solution to these complex issues cannot be found in nostalgia alone. We cannot turn back the clock, nor should we want to. The past had problems of its own.

I would love someone to write a book that looks forward, that equips young people to live in the worlds of today and tomorrow. If, by some strange coincidence, Jonathan Haidt is reading this article and is in the process of writing that book, I do hope I will bump into him again to thank him.