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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Grenfell disaster

13 June 2023

5 min read

The legacy of Grenfell

Marking the sixth anniversary of the disaster, Graham Tomlin looks to what its legacy needs to be.

Graham Tomlin

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

Grenfell Tower, wrapped in a protective layer bearing the legend: Grenfell forever in our hearts

The Grenfell Tower protectively wrapped.

The blowup on Unsplash.

It is now six years since an electrical fault in a fridge in the kitchen of a fourth floor flat led to the fire in Grenfell Tower which killed 72 people – the worst loss of life in one single incident in London since the second world war. The rest of the country has understandably moved on, preoccupied by the COVID years, a cost of living crisis and the sheer pace of life, so that Grenfell has retreated to the back of our consciousness and conscience, yet for the bereaved and survivors, who live with the memory every day, these have been six very long years.

We are told the Public Inquiry will report early in 2024, so there is still more time to wait. Meanwhile, the remains of the creaking tower still stand by the Westway in north Kensington.

Whenever I speak to people about Grenfell, the most common question is ‘what is going to happen to the Tower?’

Yet there is the nagging fear from bereaved families and campaigners that once it is demolished, they, and their loved ones will be forgotten: ‘out of sight, out of mind.’

The Tower left to its own devices would probably have fallen long ago. A damaged building like this gradually degrades over time, with the effects of gravity, weather, water seeping into the cracks which ice up in winter, leading to widening of those cracks, concrete falls and so on. As a result, there are over 4,500 props inserted into the building, keeping the creaking infrastructure standing. A large team monitors the building constantly, and it is relatively secure for the next decade if need be, despite the ongoing cost of the operation. The Tower continues to be covered with two linings of white wrapping plastic – an inner one which remains and an outer one that is replaced every year. Some local people would want to see the building come down as it remains a constant painful memory. Yet there is the nagging fear from bereaved families and campaigners that once it is demolished, they, and their loved ones will be forgotten: ‘out of sight, out of mind.’ The ongoing presence of the building, standing alone by the Westway as a constant reminder to the thousands who travel into London each day, is one of the only ways they have to keep the memory alive.

So, looking into the future, what will the legacy of Grenfell be? Convictions of those found to be culpable may well follow and rightly so, if individuals or companies can be clearly identified as having deliberately acted in underhand ways that led to the installation of the highly flammable cladding, or carelessly caused this disaster.

Some people call Grenfell a crime. Some a tragedy. Perhaps both are right. So what do you do when a crime, or a tragedy occurs? What do we do as a society?

Grenfell was not an accident. As I said in my sermon at the fifth anniversary commemoration in Westminster Abbey a year ago, Grenfell “was not an unfortunate accident – it was the result of careless decisions taken, regulations ignored, an industry that seemed at times more interested in making profits and selling products than in the precious value of human life and keeping people safe in their own homes.” In Christian language, Grenfell was the result of sin.

When you recognise you have sinned, the way to begin to put things right is to repent. ‘Repent’ is a strong word, yet it talks about turning and going in a different direction. You recognise that you have done something wrong and you need to put it right. The last six years have revealed a pattern of cutting corners, deception and lack of care in the regulation of building safety. It has also revealed flaws in our housing stock. The government’s Levelling Up Bill gives some protection to those living in insecure blocks of flats, but does not yet protect innocent leaseholders from all the costs of remedying safety faults for which they were not responsible. Some leaseholders are in the fortunate position of having their developers agreeing to foot the bill to make things safe, but others aren’t, and are still facing high insurance premiums, remediation costs and are still waiting to see who will pay, how much will be covered and when.

The Earl of Lytton’s amendment to the bill offers protection to leaseholders by ensuring those responsible for safety defects at the time of construction pay up, or if the company no longer exists. The costs are covered by an industry levy, of money raised from those who have profited from cutting corners in the past, those on whom the Public Inquiry has shone an uncomfortable light. Passing an amendment such as this, that protects vulnerable leaseholders and places the costs on those responsible for them would be a fitting way to enact repentance, to ensure Grenfell is not repeated.

With a tragedy, however, you remember. The Grenfell Memorial Commission continues to meet and work on this very task. Conversations with the community continue and the desire is for a memorial that is peaceful, reflective, positive and respectful. A design team is to be chosen in the coming 12 months, with a view to a final plan being chosen by the end of 2024. The planning process and the building of whatever form of memorial is chosen will then start in 2025, to be finished some time later.

All this will take time and a further thing required beyond repentance and remembering - patience. A visit to the 9/11 memorial in New York recently reminded me how a memorial can help process and manage the pain of remembered tragedy and trauma. The site is comprehensive, respectful, dignified and unforgettable. The 9/11 memorial opened 10 years after the attacks, and the Museum, offering a detailed moment by moment account of the day and what led up to it, opened in 2014, 13 years after the event.

Remembering and repentance takes time and need to be done well. Repentance needs to be thoroughly thought through and enacted wisely. Remembering needs to emerge from deep reflection on what has happened and finding creative ways to being something positive and even beautiful out of tragedy. Neither need to be hurried, otherwise they will be done in a shoddy and off-hand way, which disrespects the memory of those who died.

For many, Grenfell may have dropped out of public consciousness. Yet societies, like people, are defined by the way they learn from mistakes and tragedies. Comprehensive building safety legislation and a dignified memorial that keeps the memory of Grenfell and those who died there alive for years to come will be the best legacy for Grenfell, even though it will take time. We are not there yet, but that future is worth waiting for.