Why end of life agony is not a good reason to allow death on demand

Assisted dying and the unintended consequences of compassion.

Graham Tomlin

Graham is the Director of the Centre for Cultural Witness and a former Bishop of Kensington.

Towfiqu Barbhuiya on Unsplash.

Those advocating Assisted Dying really have only one strong argument on their side – the argument from compassion. People who have seen relatives dying in extreme pain and discomfort understandably want to avoid that scenario. Surely the best way is to allow assisted dying as an early way out for such people to avoid the agony that such a death involves?

Now it’s a powerful argument. To be honest I can’t say what I would feel if I faced such a death, or if I had to watch a loved one go through such an ordeal. All the same, there are good reasons to hold back from legalising assisted dying even in the face of distress at the prospect of enduring or having to watch a painful and agonising death.

In any legislation, you have to bear in mind unintended consequences. A law may benefit one particular group, but have knock-on effects for another group, or wider social implications that are profoundly harmful. Few laws benefit everyone, so lawmakers have to make difficult decisions balancing the rights and benefits of different groups of people.

It feels odd to be citing percentages and numbers faced with something so elemental and personal and death and suffering, but it is estimated that around two per cent of us will die in extreme pain and discomfort. Add in the 'safeguards' this bill proposes (a person must be suffering from a terminal disease with fewer than six months to live, capable of making such a decision, with two doctors and a judge to approve it) and the number of people this directly affects becomes really quite small. Much as we all sympathise and feel the force of stories of agonising suffering - and of course, every individual matters - to put it bluntly, is it right to entertain the knock-on effects on other groups in society and to make such a fundamental shift in our moral landscape, for the sake of the small number of us who will face this dreadful prospect? Reading the personal stories of those who have endured extreme pain as they approached death, or those who have to watch over ones do so is heart-rending - yet are they enough on their own to sanction a change to the law?

Much has been made of the subtle pressure put upon elderly or disabled people to end it all, to stop being a burden on others. I have argued elsewhere on Seen and Unseen that that numerous elderly people will feel a moral obligation to safeguard the family inheritance by choosing an early death rather than spend the family fortune on end of life care, or turning their kids into carers for their elderly parents. Individual choice for those who face end of life pain unintentionally lands an unenviable and unfair choice on many more vulnerable people in our society. Giles Fraser describes the indirect pressure well:

“You can say “think of the children” with the tiniest inflection of the voice, make the subtlest of reference to money worries. We communicate with each other, often most powerfully, through almost imperceptible gestures of body language and facial expression. No legal safeguard on earth can detect such subliminal messaging.”

There is also plenty of testimony that suggests that even with constant pain, life is still worth living. Michelle Anna-Moffatt writes movingly of her brush with assisted suicide and why she pulled back from it, despite living life in constant pain.

Once we have blurred the line between a carer offering a drink to relieve thirst and effectively killing them, a moral line has been crossed that should make us shudder.

Despite the safeguards mentioned above, the move towards death on the NHS is bound to lead to a slippery slope – extending the right to die to wider groups with lesser obvious needs. As I wrote in The Times recently, given the grounds on which the case for change is being made – the priority of individual choice – there are no logical grounds for denying the right to die of anyone who chooses that option, regardless of their reasons. If a teenager going through a bout of depression, or a homeless person who cannot see a way out of their situation chooses to end it all, and their choice is absolute, on what grounds could we stop them? Once we have based our ethics on this territory, the slippery slope is not just likely, it is inevitable.

Then there is the radical shift to our moral landscape. A disabled campaigner argues that asking for someone to help her to die “is no different for me than asking my caregiver to help me on the toilet, or to give me a shower, or a drink, or to help me to eat.” Sorry - but it is different, and we know it. Once we have blurred the line between a carer offering a drink to relieve thirst and effectively killing them, a moral line has been crossed that should make us shudder.

In Canada, many doctors refuse, or don’t have time to administer the fatal dose so companies have sprung up, offering ‘medical professionals’ to come round with the syringe to finish you off. In other words, companies make money out of killing people. It is the commodification of death. When we have got to that point, you know we have wandered from the path somewhere.

You would have to be stony-hearted indeed not to feel the force of the argument to avoid pain-filled deaths. Yet is a change to benefit such people worth the radical shift of moral value, the knock-on effects on vulnerable people who will come under pressure to die before their time, the move towards death on demand?

Surely there are better ways to approach this? Doctors can decide to cease treatment to enable a natural death to take its course, or increase painkillers that will may hasten death - that is humane and falls on the right side of the line of treatment as it is done primarily to relieve pain, not to kill. Christian faith does not argue that life is to be preserved at any cost – our belief in martyrdom gives the lie to that. More importantly, a renewed effort to invest in palliative care and improved anaesthetics will surely reduce such deaths in the longer term. These approaches are surely much wiser and less impactful on the large numbers of vulnerable people in our society than the drastic step of legalising killing on the NHS.

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Education

4 September 2023

6 min read

Shouldn’t you be in school?

Beyond headlines about school refusers and ghost children, lies a challenge to adult notions of schooling. Henna Cundill unpacks the issue, inspired, in part, by fish.

Henna Cundill

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

A school of tropical fish swims to the right, while one swims to the left.

A school of tropical fish off the Maldives.

The squeaky black shoes are back in the hall, and by now all the white polo-shirts in the land (except aged 4-5, slim-fit) have been snaffled by harassed mums and dads. Yes, it is that time of year again – the time for newspaper editors to dredge up some statistics about the rising number of “school refusers” – anxious young people whose squeaky shoes and white polo shirts are looking set to never leave the house.

The numbers are “spiralling” frets the Guardian, and the Daily Mail asks “Are you raising a ‘ghost child’?” Forth come the stock images of a sulky teenage girl pulling the duvet over her face, or a young boy with an oversized backpack and hands clamped firmly over his ears. A parent, frowning, is quoted as saying that the school isn’t doing enough. A headteacher, eyebrows knitted, says how difficult it is without the support and cooperation of the parents. Then everybody shakes their heads and blames the pandemic.

In my time as a School Chaplain, before the pandemic, I saw how truly awful school refusal is – for everyone involved. Beneath the covers, underneath the backpack, there is actually no “refusal” of anything – in fact, there is a campaign to get rid of this term, which I heartily support. Refusal implies there is a choice, but when a young person feels so overwhelmingly anxious and afraid, there is no choice for them, other than fight, flight, or freeze. Parents and caregivers feel judged, teachers are largely helpless. Social workers, when they get involved, quickly feel like they are the enemy of absolutely everyone involved. Surrounding any long-term school refuser there is often a hot mess of frustrated adults, and underneath the frustration, sadness.

No Scouts, no community choir, not even traipsing down to the park to hang out informally with their peers. Instead, anxiety traps them into the perceived safety of home.

Why sadness? Because we know that, regardless of our views on the importance of cookie-cutter educational attainments, no young person should be isolated. Even families who are committed and evangelistic about home-schooling will also schedule social activities for their children, be it membership of various clubs and organisations or group sessions of learning with other home-schooled kids. But the school refusers I have known have typically also refused anything like that. No Scouts, no community choir, not even traipsing down to the park to hang out informally with their peers. Instead, anxiety traps them into the perceived safety of home, that one tiny corner of the world where they have a sure sense of belonging and some modicum of control.

With the idea of “belonging” in mind, perhaps it is helpful to think about what a school actually is. The word school is multi-faceted in meaning. In nature, it denotes a group of fish, all swimming together. Such behaviour would seem counter-intuitive, since it means that all the fish are then competing for the same food or other resources. But ask any fish and it will tell you that being part of the group is itself a resource, enhancing their ability to find food and to protect themselves from predators. We could put this a more familiar way: a school is where the whole is greater than the sum of its parts.

There’s also another meaning to the word school – groups of creatives or philosophical thinkers whose styles and methods influence and complement each other, e.g., “His paintings are those of the Impressionist school.” We can see how, in these schools, people spark off one another, constantly developing and refining their own work in response to the work of others. Those with greater skill and experience mentor those who are just beginning. In this respect, we could say that a school is where people can push the boundaries of human creativity and knowledge.

Since the ancient days, when learners gathered around the Greek philosophers, first to listen, then to discuss, and then to refine ideas, we have gathered our young people into schools for the purpose of educating them. We have long acknowledged that the best learning is a group activity which takes place over time. This is why home schoolers also schedule the clubs and activities – not just because children need friends (although that is important) but because there is a particular “other” kind of human progress that happens when we have to rub along with other people. When learners are placed in groups, ideas can be tested, boundaries can be overcome, creativity meets with critique - the whole quickly becomes greater than the sum of its parts.

You may notice that many schools promote themselves as being a “learning community” or a “family.” It’s not just about being twee – research shows that promoting a sense of belonging reduces the amount of school refusal and non-attendance. We know that belonging matters, as Belle Tindall has recently discussed, and that a sense of belonging can impact our health and even our mortality. (“Well, I told you so!” says the fish.)

This was something the early Christians knew too. In the first few decades after Jesus’s life and ministry they gathered in groups to pray and to discuss, just like those earlier followers of Plato and Aristotle had done. There was an eagerness to learn from those who had heard Jesus’ teaching first hand, and to develop and refine their understanding of what that teaching could mean in practice. It was a school, although they called it a church – or strictly speaking an ecclesia in the Greek, which just means a gathering of people.

In the ecclesia there was good natured debate, but also some spicy disputes and arguments, along with a lot of discussion about who was “in” and who was “out” - something which is also a hot topic in the school playgrounds of today. Into that context, Paul (one of the first leaders of the ecclesia) wrote that the church was a bit like a human body, in which:

The eye cannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!”

His point was that belonging is about knowing not just that you belong but that you are needed. In a human body, different parts have different roles, and Paul also asks his readers to consider this point:

“If the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be?”

I have seen that schools do often try very, very hard to communicate to young people that they belong. But, shackled to the syllabi and never more than a few short months away from the next round of exams or individualised assessments, it’s much harder for schools to show young people that they are needed. With our present system, how can we show young people that, even if they are not predicted to be the student in the class who gets straight A’s, their presence there in the group and their role in the learning process is vital, and contributes to the learning of others?

When it comes to the presence of absence among our young people, schools have often gone as far as they can practicably go, as have parents, as have social workers. And the young people themselves? Well, they are stuck – biologically their only options are fight, flight, or freeze.

So that leaves us, the society that over-emphasises individualised achievement, that glorifies celebrity and individual success. In adulthood we so quickly forget how to “do” school, how to model it to our young people, swimming all together in a way designed to promote human knowledge, protect each other from danger or even just to ensure that everyone gets fed. No wonder our young people absorb a sense that their presence isn’t needed, when in so many areas of life it’s every fish for themselves.

As adults, perhaps we should be asking ourselves the question: why aren’t we in school?