Article

Assisted dying

Care

Comment

Death & life

9 January 2024

6 min read

What do you make of Esther?

A campaigner’s call to change an assisted dying law got family calling MND sufferer Michael Wenham. Here he shares why such legalisation will increase people’s fear of dying.

Michael Wenham

Michael Wenham lives with a motor neurone disorder, Primary Lateral Sclerosis. He blogs at My Donkey Body.

Today Programme post about Esther Rantzen's comments.

BBC.

"What do you make of Esther Rantzen?" asked my brother.

I knew what he was talking about, as no doubt all listeners of Radio 4's Today Programme would have done. Clearly the advocates of assisted dying, or specifically suicide, have launched the next round of their campaign, even enlisting the late Diana Rigg, whose resemblance to my wife was once commented on by an old welsh policemen, as a witness. The Today Programme devoted a great deal of airtime to the subject over a number of days.

My reply to my brother was that I thought it was a good thing if we were more open about the subject of death and dying. After all they are events everyone without exception will come in contact with at some point or another. So, the sooner we stop treating it as a taboo subject the better. However, the dangers of legalising assisted suicide, are proved by places like Canada and Belgium.

I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important.

In January this year I made a submission to the Parliamentary Health and Social Care Committee consultation on assisted dying/assisted suicide. Here’s some of that submission.

“I am writing as an individual who was diagnosed with a rare form of Motor Neurone Disease (MND) twenty-two years ago and who has experienced the condition’s relentless deterioration since then. There are a number of my contemporaries who have survived that long. That, and witnessing the ravages of the disease on friends in our local MNDA branch plus an Ethics qualification from Oxford, is the extent of my expertise.”

“My first observation is how positively my contemporaries, with short or longer prognoses, with the disease seize hold of life. Clearly there are some who, like Rob Burrows, devote themselves to fund-raising and creating awareness; while others enjoy the opportunities of life that come their way. What might have seemed a death sentence has proved a challenge to live.

"Secondly, I have recently discovered myself how expert professional care can enhance what is often portrayed as undignified dependence. Good caring can in fact add to quality of life. The sad thing however is that it is not something which the state will normally provide. Along with terminal palliative care, domestic social care must surely be a spending priority for any government that cares about the well-being of all its citizens. I’m fortunate to live an area of excellent MND provision and good, though not abundant, palliative care. But I understand that this is not equally spread through the country. If it were, I suspect it would reduce the fear of dying which must be a major motivator for assistance to ending one’s life.

"Ironically, in MND, according to the Association’s information sheet, How will I die?, those fears are greatly exaggerated:

In reality, most people with MND have a peaceful death. The final stages of MND will usually involve gradual weakening of the breathing muscles and increasing sleepiness. This is usually the cause of death, either because of an infection or because the muscles stop working.

Specialist palliative care supports quality of life through symptom control. practical help, medication to ease symptoms and emotional support for you and your family.

When breathing becomes weaker, you may feel breathless and this can be distressing. However, your health care professionals can provide support to reduce anxiety.

You can also receive medication to ease symptoms throughout the course of the disease, not just in the later stages. If you have any concerns about the way medication will affect you, ask the professionals who are supporting you for guidance.

Further weakening of the muscles involved in breathing will cause tiredness and increasing sleepiness. Over a period of time, which can be hours, days or weeks, your breathing is likely to become shallower. This usually leads to reduced consciousness, so that death comes peacefully as breathing slowly reduces and eventually stops.

"So, this is a third and subtle danger of legalising assisted dying/suicide. It would increase people’s fear of the inevitable fact of death and dying. I think this can be one factor in explaining why, in jurisdictions which have introduced it, we see it being extended beyond the first strict limits. It is held out as an answer to this fearful fact, death, whereas in fact death and dying should be talked about in realistic terms, as normal, as concisely outlined by Dr Kathryn Mannix. As she says, normally dying isn’t as bad as we think.

If the government should be doing anything, the first thing it might well do, is to promote informed education about dying of the sort exemplified by specialists such as Dr Mannix, as well as adequately funding her former specialism of palliative care. It should start with schools’ curricula. After all every child will have encountered death at some stage.

Finally, the dangers of coercion, in my experience, are not so much external as internal. It’s often rightly observed that prolonged pain is worse for the engaged spectator than for the sufferer. If you care for someone, seeing them struggling is barely tolerable. You may wish to see their struggle over, but underlying that wish is your own desire to be spared more of your own horror show. The person who is ‘suffering’ however has that strong survival instinct, common to all humans, and is more concentrated on living than dying. Having said that, when you are depressed, as might be natural, that instinct gets temporarily eclipsed. Then you need protection from your own dark sky. It is at such times that your other inner demons emerge: your sense of being a burden - to your family, to your friends (if you have any), to the NHS and to the state purse; your fear of losing your savings and of leaving nothing to your loved ones; your fear of pain and of dying (exaggerated by popular mythology), and your sense of suffering, heightened by your depression.

"For most of us with long incurable diseases, it’s these internal perceptions that are most coercive, although they can be easily compounded or even exploited from outside. I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important to our society and worth caring for. ‘Any man’s death diminishes me...’ and so we will value it to the end."

I'm grateful that when I received my 'motor neurone disorder' diagnosis, which was initially frightening, I couldn't be tempted to opt for an early death. Instead of one Christmas with my family (as I warned them), I've enjoyed 22 more Christmases. That was the law against suicide fulfilling its safeguarding function, protecting the vulnerable, as I was then. Contrary to my preconceptions, my form of MND (PLS) is very gradual and I've been able to live a full if increasingly limited life, thanks to my wife, Jane, who cares for me 100 per cent. 24 hours a day, seven days a week.

My view is still that legalising assisted dying/suicide has more cons than pros. The better choice is to invest in hospice and palliative care, so that everyone may have access to pain and symptom care in the last years of their life.

Article

Comment

Grenfell disaster

Trauma

6 February 2025

6 min read

Grenfell: how long should we remember?

There are good and bad ways of remembering.

Graham Tomlin

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

A white building wrap around a tower is topped by a green heart and the slogan: Grenfell Always In Our Heaets.

Grenfell Tower, Summer 2024.

Rc1959, CC0, via Wikimedia Commons.

For nearly eight years now, Grenfell Tower has remained standing as a reminder of one of the most painful days in recent British history. The news that the government intends to dismantle the remains of the Tower has split local opinion. Some of the bereaved and survivors suggest that the government has scarcely consulted them. For many, the building is a tomb, still containing the memory, if not the actual remains of their loved ones whose bodies could not be recovered. They understandably fear them being forgotten when the building no longer stands as a reminder. Last year I sat in on a gathering where bereaved families and survivors of the fire told their stories in the hearing of representatives of the companies who were responsible for the cladding which caused the fire to spread. The memories and emotions are still raw and unhealed.

On the other hand, many local residents would like it taken away, as its constant, looming presence is a painful reminder of that dark night. They also see the logic in bringing down a fatally damaged and increasingly dangerous structure that costs the taxpayer millions each year to keep from collapsing under its own weight.

The key issue at the heart of this debate is how we remember - especially, how we remember pain. In the rhetoric around Grenfell, as with many other tragedies, we often hear calls to ‘always remember’ and that we must ‘never forget’ the wrongs done which caused the deaths of those 72 people. The Grenfell Memorial Commission, which was charged with thinking about what memorial should stand on the site of the building in future, claimed as its aim to “make sure the Grenfell tragedy can never be forgotten.”

Such calls to ‘never forget’ are powerful. They seem a proper tribute to those who died, they ensure that those culpable are not let off too easily, and that justice is properly done. To blithely forget such horrendous evils seems an affront to justice, and a morally culpable act.

Yet must we always remember the hurts and pains of the past? Can we imagine a future where such memories fade into the distance and no longer cast their painful shadow over our lives?

Whether and when Grenfell Tower comes down, is yet to be determined. Yet only when we keep in mind the destination of the journey of healing can we make good decisions...

Theologian Miroslav Volf asks all these questions in his book The End of Memory. He describes good and bad ways of remembering. We can remember to cherish the dead, to learn lessons for the future, to ensure justice is done. Yet we can also remember to nurse grievances, to cling onto grudges, to imagine horrible pain inflicted on those who wronged us. Memories of wrongs done to us can imprison and define us purely as victims, never in control, always subject to the actions for others, with no agency of our own.

Volf’s Christian faith tells him that the human race is beckoned towards a new world, in the full presence of God, of what he calls ‘final reconciliation’. It is a place where we will be captivated by a vision of the beauty and goodness of God, a vision that we only dimly glimpse in this world. He asks the question: in such a world, will we remember all the wrongs done to us? Can we imagine still clinging onto the memory of the sins and crimes that others inflicted on us? Even if that were in principle possible, would we remember all the harm done to us? And the harm we did to others? If not, which sins would we remember? Which ones would we forget? Would not such memories blight the joy that such a world would surely offer?

Reflecting on his own youthful and painful memories of interrogation in communist Yugoslavia, and other tragedies such as the 9/11attacks, Volf imagines getting to the point where we don't forget the terrible things that others have done to us, but when we actively don't remember them. They still occupy a place in our minds but are instead relegated to a corner of our consciousness, under our control, no longer rearing their ugly and painful heads when triggered by other events. Such an ability not to remember, he suggests, is a good thing:

"Non-remembrance of wrongs suffered is the gift God will give to those who have been wronged."

At the same time, Volf is careful not to imagine getting to this point too easily. Wrongdoers cannot for a moment insist that those they have wronged forget their misdeeds. Such non-remembrance can only happen when truth has been told, sins punished, and justice done. Yet when all that has taken place, that ‘final reconciliation’, Volf imagines, might even embrace the unimaginable - an ultimate reconciliation between the wronged and the wrongdoers.

Is it possible to imagine children whose parents were killed because of the negligence and culpable cheating of contractors who knowingly put unsafe cladding on Grenfell Tower, ever being reconciled to and even embracing the perpetrators? Volf suggests we can, while recognising that this can only happen when the crime has been identified, fully recognised, repented of profoundly, forgiveness offered and accepted and the appropriate penalty paid.

While such a process remains incomplete, the obligation to remember remains, and reconciliation cannot yet take place. But true healing from such hurts is not to be forever dominated by them, defined by them, or to live in constant enmity and resentment because of them. It is, instead, to gain the strength and ability not to remember them, not to be defined by them, and even - possibly, perhaps - to find reconciliation with their perpetrators.

The Grenfell Public Inquiry that reported last year was an important step for the bereaved and survivors. It was not the end of the journey. Far from it. The process of enacting justice through prosecution of the guilty lies ahead. But as an exercise in truth-telling, in giving perpetrators the opportunity to own up and confess their guilt, in a truthful recognition of what went wrong, it was a vital step towards the possibility of reaching that stage when the memory of Grenfell no longer defines its victims. It opens up the possibility at some point in the future, where they might be in control of their memories rather than their memories controlling them.

The Danish Christian philosopher Søren Kierkegaard once wrote that we humans need to learn both “the art of forgetting” and “the art of remembering”. To know when and how to do one and when to do the other is the gift of God and an art of true wisdom.

Whether and when Grenfell Tower comes down, is yet to be determined. Yet only when we keep in mind the destination of the journey of healing can we make good decisions about such fraught and emotionally charged issues. The Tower cannot remain as it is - everyone acknowledges that . Yet it's hard for many to think about its disappearance without knowing what will replace it. Which is why plans to demolish the Tower must go hand in hand with the plans for the lasting Memorial that will stand on the site. Yet that can only happen if it serves the goal of being able truthfully to remember no longer the pain and injustice of the past.

Join with us - Behind the Seen

Seen & Unseen is free for everyone and is made possible through the generosity of our amazing community of supporters.

If you’re enjoying Seen & Unseen, would you consider making a gift towards our work?

Alongside other benefits (book discounts etc.), you’ll receive an extra fortnightly email from me sharing what I’m reading and my reflections on the ideas that are shaping our times.

Graham Tomlin

Editor-in-Chief

Find out more and sign up