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.

Review

Comment

Politics

6 February 2024

4 min read

Truth decay: lying will destroy us

The British way of doing things extends to more than an unwritten constitution. Simon Burton-Jones argues it includes how we lie.

Simon Burton-Jones

Simon is Bishop of Tonbridge in the Diocese of Rochester. He writes regularly round social, cultural and political issues.

A Pinnochio figure stands on a window sill beside some net curtains.

Milk Chan on Unsplash.

"Why are things so ***t?"

This was the question veteran journalist Gavin Esler was asked as he walked down a Devon street one day by a member of the public who recognised him. It was a very British kind of question, crudely expressing a common underlying feeling. Esler has set out to answer it in his book: Britain Is Better Than This. It isn’t a pretty picture and will be contested. When a government has been in power for thirteen years, blame for the current state of affairs is hard to refute. There are some who do, but not many these days.

Gavin Esler’s previous book, How Britain Ends, looked at the demise of the Union, propelled by Brexit. Esler himself was a member of Change UK, so his position as a remainer is well documented. Scotland’s vote to remain contrasted sharply with an English nationalist vote to leave. Northern Ireland’s fragile peace was put greatly at risk by deepening the divide between the island’s north and south. As a political movement, the Conservative and Unionist Party seemed to defy their name.

Telling fibs in politics is as old as politics, but he and others identify newly organised patterns of lying; untruths being told as a deliberate strategy.

Britain Is Better Than This exposes the lack of a codified constitution as a developing risk. The UK’s deliberately vague and amorphous unwritten constitution has often been a source of its proud exceptionalism. We do it differently because we can, and we pull it off. Esler notes the almost sacred tones in which this is expressed. It is a mystery, using rarefied, opaque language similar to eucharistic liturgy to inspire reverential awe. But when the constitution is essentially unwritten, commentators rather than judges take precedence as interpreters. And there is elasticity: the constitution is what those with power say it is at any given moment. The Crown, the government and the State seem to be used interchangeably, according to the need. If this has worked in the past, it is because of Britain’s ‘good chap’ theory of government, so called because whatever uncertainty may prevail, decent, well-educated, public-spirited people can be relied upon to make it work.

Esler’s point is that the cracks are showing, and more people are poking their fingers through the holes to make them bigger. The Queen’s proroguing of Parliament in 2019 at the request of Boris Johnson was ruled unlawful by the Supreme Court, showing the system can rectify issues, but it also demonstrated the risk of future, unscrupulous leaders exploiting those cracks. Benjamin Netanyahu’s attempted curtailing of judicial power in favour of executive authority has set a model which others may follow. Esler’s case for a written constitution and also for electoral reform to introduce fairer systems of proportional representation are not panaceas and he while he recognises this, he prefers them.

As a journalist he is on assured ground in the assessment of what the Rand Corporation has termed truth decay: the growing ascendency of the lie in public debate. Telling fibs in politics is as old as politics, but he and others identify newly organised patterns of lying; untruths being told as a deliberate strategy. This is murky territory for the democratic world. Across global, digital media, we disagree more about facts, blur fact and opinion, prefer personal experience to facts and trust historic sources of information less. Esler’s wants to see media literacy taught more effectively, as Nordic countries do. Deep fake technology is only going to make judgments harder. Courses and syllabuses with a ‘media’ prefix are still considered unserious in some circles, but without this kind of literacy, Britons may become prey for some ugly predators.

We have an uneasy, open marriage with the truth in public and in private (where research shows we all lie far more than we realise).

In 2020, the Edelman Trust Barometer put the UK in twenty-seventh place out of twenty-eight OECD nations for trust in democratic institutions; only Russia lay below. Britain’s mythical capacity for ‘muddling through’ is based in part on our ability to ignore bad news until we can do so no longer; kicking the can down the road may be a truer expression. Gavin Esler has done us all a favour by showing what is at stake. The book’s opening question: Why are things so ***t?, however, only takes us so far. By the end we may know why. What we are able to do about it is the defining question.

In 1998, Jonathan Freedland’s book Bring Home The Revolution struck a nerve. The UK was transitioning from a tired government to a younger, more energetic one; the tech revolution was taking off, millennial optimism was off the leash. Freedland believed the time was right for the UK to become a republic with a written constitution like the USA. A lot has happened since then, and where Freedland’s book captured the hopefulness of the time, Esler’s feels more like a lament; a cry for a better world in the face of the facts.

His implicit call for us to live in truth (as the late Czech president Vaclav Havel would put it) carries most conviction. We have an uneasy, open marriage with the truth in public and in private (where research shows we all lie far more than we realise). The traction of ‘my truth’ rather than, more accurately, ‘my story’ may show how close we have come to a precipice. My truth does not set me free. If we believe the truth sets us free, we also get what David Foster Wallace meant when he observed: 'the truth will set you free, but not until it has finished with you'. Words Christ perhaps left unsaid. Big ideological changes are not afoot in Britain today, but culture is formed of a million daily interactions, where the glue of trust sticks and the power of imitation prevails. Telling porkies when others don’t becomes a tougher gig.