Article
Assisted dying
Care
Comment
Death & life
Suffering
5 min read

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

Assisted dying and the unintended consequences of compassion.

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

A open hand hold a pill.
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. 

Article
Creed
Death & life
Easter
Film & TV
4 min read

Don’t die: the relentless pursuit of life

If there was a way beyond death, shouldn't we give up everything to find it?

Josh is a curate in London, and is completing a PhD in theology.

A man stands in his home wearing a black t-shirt that reads 'DON'T DIE'.
Ryan Johnson at home.
Netflix.

In the days before my daughter's birth, I was reading about the fear of death. Ernest Becker won a Pulitzer Prize in 1974 for his book The Denial of Death. In it, he argues that our lives are structured around the fear of death. In the posthumously published follow-up, Escape from Evil, Becker writes:

"Man wants to persevere as does any animal…but man is cursed with a burden no animal has to bear: he is conscious that his own end is inevitable."  

For Becker, human culture is really a series of attempts to avoid or transcend the reality of death. We follow charismatic leaders in the hope of becoming part of something greater. We have children in the hope that something of us will last beyond the span of one lifetime. We collude to marginalise pensioners and prisoners and any other reminders of our frailty, hiding them away so we can briefly pretend at immortality.  

Last week I thought of Becker when I watched Don’t Die: The Man Who Wants to Live Forever on Netflix. The documentary follows Bryan Johnson, who made his millions in tech and is now going to extremes to undo the impact of ageing on his body. An exacting routine of dieting, sleep, fitness and medication is augmented by riskier interventions, such as experimental gene therapies. 

As Johnson tells it, his past struggles with mental ill health and suicidal ideation led him to pursue a life less reliant on his mind. He seeks instead to listen to what his organs tell him they need via algorithms and diagnostics: fallible humanity corrected by data. 

Johnson is resolute that it is not fear of death that drives the enterprise but a desire to live, particularly to live as long as possible with his son. One of the documentary’s strangest and most touching scenes is an inter-generational plasma transfer. There is evidence that plasma from a younger donor can have a de-ageing effect on a recipients' organs. So, Bryan decides to give his dad some of his plasma and his son gives him some plasma. Each of the three men, we learn, have experienced isolation after leaving Mormonism. The transfer becomes a kind of founding of a family outside the faith they have each rejected and been rejected by. 

Johnson’s pursuit of longevity now plays an equivalent role in his life to that faith– not just as a source of belief and human purpose, but of human connection. The documentary ends with a montage of "Don't Die" communities around the world hiking and dancing and celebrating life together.  

In the months after my daughter's birth, I recognised something of what Becker names. Here is someone who will outlast me, something of me will transcend the limits of my life. And here is someone who reminds me of those limits. Here is this great gift and joy who will sit in the front row at my funeral: the embodiment of life’s goodness a witness to its end.  

Are we wrong to fear death? If there was a way beyond it, shouldn't we give up everything to find it?

There is more going on in Bryan Johnson and the wider de-ageing movement than Becker's analysis would perhaps allow. Fear of death is not the only story here. When is it ever, really? Fear only makes sense alongside—and in light of— goodness, life, gift. To fear loss, you must have something to lose.  

And yet, the story Becker tells about culture does seem to ring truer in the years since his death. As technology improves, death's denial becomes more convenient. As the natural world degrades, it becomes more compelling. And as wealthy men become wealthier still, their denial on behalf of us all becomes ever more creative.  

And who can blame us—any of us? Are we wrong to fear death? If there was a way beyond it, shouldn't we give up everything to find it? 

This Wednesday, Ash Wednesday, marks the beginning of Lent, the Christian season of reflection and self-denial. On Wednesday, I will receive an ash cross, and as I draw that same cross on forehead after forehead, I will repeat these words:  

"Remember you are dust and to dust you shall return,  
turn away from Sin and be faithful to Christ."  

I will hear the invitation, in my voice and not my own, to give up the futile theatrics of a deathless life. I will pray for the strength to live what I have spoken. I will say goodbye to those who I marked, each of us now a signpost to our shared mortality. And then I will go home to yoghurty hands, bathtime songs and giggles at the funny smudge on my face.

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