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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21 June 2024

4 min read

It's our mistakes that make us human

What we learn distinguishes us from tech.

Silvianne Aspray

Silvianne Aspray is a theologian and postdoctoral fellow at the University of Cambridge.

A man staring at a laptop grimmaces and holds his hands to his head.

Francisco De Legarreta C. on Unsplash.

The distinction between technology and human beings has become blurry: AI seems to be able to listen, answer our questions, even respond to our feelings. It becomes increasingly easy to confuse machines with humans. In this situation, it is increasingly important to ask: What makes us human, in distinction from machines? There are many answers to this question, but for now I would like to focus on just one aspect of what I think is distinctively human: As human beings, we live and learn in time.

To be human means to be intrinsically temporal. We live in time and are oriented towards a future good. We are learning animals, and our learning is bound up with the taking of time. When we learn to know or to do something, we necessarily make mistakes, and we take practice. But keeping in view something we desire – a future good – we keep going.

Let’s take the example of language. We acquire language in community over time. Toddlers make all sorts of hilarious mistakes when they first try to talk, and it takes them a long time even to get single words right, let alone to try and form sentences. But they keep trying, and they eventually learn. The same goes with love: Knowing how to love our family or our neighbours near and far is not something we are good at instantly. It is not the sort of learning where you absorb a piece of information and then you ‘get’ it. No, we learn it over time, we imitate others, we practice and even when we have learned, in the abstract, what it is to be loving, we keep getting it wrong.

This, too, is part of what it means to be human: to make mistakes. Not the sort of mistakes machines make, when they classify some information wrongly, for instance, but the very human mistake of falling short of your own ideal. Of striving towards something you desire – happiness, in the broadest of terms – and yet falling short, in your actions, of that very goal. But there’s another very human thing right here: Human beings can also change. They – we – can have a change of heart, be transformed, and at some point in time, actually start to do the right thing – even against all the odds. Statistics of past behaviours, do not always correctly predict future outcomes. Part of being human means that we can be transformed.

Transformation sometimes comes suddenly, when an overwhelming, awe-inspiring experience changes somebody’s life as by a bolt of lightning. Much more commonly, though, such transformation takes time. Through taking up small practices, we can form new habits, gradually acquire virtue, and do the right thing more often than not. This is so human: We are anything but perfect. As Christians would say: We have a tendency to entangle ourselves in the mess of sin and guilt. But we also bear the image of the Holy One who made us, and by the grace and favour of that One, we are not forever stuck in the mess. We are redeemed: are given the strength to keep trying, despite the mistakes we make, and given the grace to acquire virtue and become better people over time. All of this to say that being human means to live in time, and to learn in time.

So, this is a real difference between human beings and machines: Human beings can, and do strive toward a future good.

Now compare this to the most complex of machines. We say that AI is able to “learn”. But what does it mean to learn, for AI? Machine learning is usually categorized into supervised learning, unsupervised and self-supervised learning. Supervised learning means that a model is trained for a specific task based on correctly labelled data. For instance, if a model is to predict whether a mammogram image contains a cancerous tumour, it is given many example images which are correctly classed as ‘contains cancer’ or ‘does not contain cancer’. That way, it is “taught” to recognise cancer in unlabelled mammograms. Unsupervised learning is different. Here, the system looks for patterns in the dataset it is given. It clusters and groups data without relying on predefined labels. Self-supervised learning uses both methods: Here, the system uses parts of the data itself as a kind of label – such as, for instance, predicting the upper half of an image from its lower half, or the next word in a given text. This is the predominant paradigm for how contemporary large-scale AI models “learn”.

In each case, AI’s learning is necessarily based on data sets. Learning happens with reference to pre-given data, and in that sense with reference to the past. It may look like such models can consider the future, and have future goals, but only insofar as they have picked up patterns in past data, which they use to predict future patterns – as if the future was nothing but a repetition of the past.

So this is a real difference between human beings and machines: Human beings can, and do strive toward a future good. Machines, by contrast, are always oriented towards the past of the data that was fed to them. Human beings are intrinsically temporal beings, whereas machines are defined by temporality only in a very limited sense: it takes time to upload data, and for the data to be processed, for instance. Time, for machines, is nothing but an extension of the past, whereas for human beings, it is an invitation to and the possibility for being transformed for the sake of a future good. We, human beings, are intrinsically temporal, living in time towards a future good – which machines do not.

In the face of new technologies we need a sharpened sense for the strange and awe-inspiring species that is the human race, and cultivate a new sense of wonder about humanity itself.