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

War & peace

25 September 2024

6 min read

How Ukraine reckons with its reality

From Kyiv's coffee shops to the front line.

Mark Meynell

Mark Meynell is the author and minister.

A woman squats and touches a war memorial

War memorial in Bucha.

How on earth it came up I have no idea, but I vividly remember chatting with my grandmother about the ‘Phoney War’ of 1939. I can’t have been much older than 10. It’s not that I was especially inquisitive about history, nor that I had the presence of mind to ask for stories from her extraordinary life. How I wish I’d done that with all four of my grandparents. But my hunch is that it was prompted by sitting in the garden on a glorious summer’s day. We were probably shelling peas or peeling potatoes or something—she always got people staying to do jobs.

She was reminiscing about how weird those months in mid-1939 were, in particular remembering how lovely the summer had been, far brighter and drier than normal. Even after the Nazi invasion of Poland on 1st September (thus triggering Britain and France to declare war two days later), the weather remained good. A sense of war’s inevitability had hovered throughout 1939, so even after Chamberlain’s famous ‘final note’ was rejected, nothing much changed. At least, not for ordinary Britons. Life went on. It would take many months before the conflict came all too close to home.

I couldn’t help but think about this during my visit to Kyiv and Lviv earlier this month. The difference, of course, is that there was nothing phoney about Russia’s 2022 invasion or the horrors inflicted on eastern Ukraine since the 2014 annexation of Crimea. But for the majority, routines continued uninterrupted. As they must.

For example, assuming the worst, I had contacted several Ukrainian friends offering to bring any scarce or unavailable items from Britain. No one took me up on it; it was unnecessary, they all said. After wandering through both cities, it was obvious why. Although trade will undoubtedly have been slower than before the war, shops seemed well stocked with all the necessities and not a few luxuries.

Then on my final morning, I was quietly sipping a cappuccino in Lviv’s historic Rynok Square when the air-raid sirens suddenly cranked up into their now familiar whine. Being kept awake by Kyiv’s sirens had been a new experience for me (a mark of our Western privilege that we have avoided all-out war on our soil for decades). But this was my first daytime alert. It was even accompanied by booming Ukrainian announcements, although the advice was inevitably lost on me. As it was on all around me, who seemed assiduously to ignore it. The few mid-morning pedestrians—few tourists come here— maintained their ambling pace unchanged; the taciturn waiter patiently took orders at the next table; a middle-aged businessman on the square continued his negotiations on the phone while gesticulating with his briefcase. So naturally, I kept sipping.

This was not because the sirens cried wolf. Just 10 days before my visit, Lviv had suffered one of the worst air attacks of the war, with 7 killed, over 60 injured, as well as the destruction of schools and historic buildings. Moreover, I met a friend for lunch an hour later who told me that some man-sized drones had attacked his side of Lviv and he saw one or two shot down. So it was all real enough. What was everyone thinking?

Those who keep going amid a siren’s whine are not perhaps ignoring it but taking calculated risks in their perseverance.

Ignoring reality

T. S. Eliot famously observed that "Humankind cannot bear very much reality." So perhaps that was what was going on here. After two and a half years of war, I can quite imagine exhaustion and resignation to what was going on. So it just gets ignored. Ordinary life must go on. After all, only a small proportion of the population is actively engaged in the war; the rest, if they haven’t already left, must try to keep calm and carry on. In fact, men aged between 18-60 are unable to leave at all without the necessary papers and these are hard to come by. Perhaps the only way, then, is to avoid thinking altogether. On a beautiful day, once autumn has begun to temper Ukraine’s oppressive summer heat, sustaining the illusion is simple. Life carries on.

Of course, it can’t last. Every single person I spoke to had family or friends at the front; some had already been killed. The destruction caused by air raids brought a distant conflict onto people’s doorsteps. However, it was driving through the pleasant Kyiv suburbs of Bucha and Irpin, both of which I had previously visited several times, that reinforced the impossibility of ignoring reality. Bucha is now emblematic of the invasions very worst atrocities, from when Russian forces had Kyiv almost entirely surrounded before being pushed east. Locals were rounded up and slaughtered, with the bodies of several hundred civilians later found to have died from bullet wounds rather than shrapnel. But as we drove through, it was impossible to conceive of those horrors. Apart from anything, the weather was so lovely. Atrocities don’t occur on beautiful days… or in lovely places… surely?

Persevering amid reality

What impressed me most in those areas was the speed of the rebuilding work. Entire shopping malls and neighbourhoods had been razed. But after only twelve months or so, a memorial to Bucha’s 500 dead had already been erected. As we drove through, major construction projects were underway, with multiple cranes towering over rapidly rising apartment blocks and retail parks.

These are not signs of reality ignored but faced. These are signs of gritted hope. So it struck me that those who keep going amid a siren’s whine are not perhaps ignoring it but taking calculated risks in their perseverance. Just as it is unwise, if not impossible, to live on a permanent adrenaline rush, so one cannot always exist in flight or fight mode indefinitely. It is simply that in wartime, risk thresholds change. Human beings are resilient and adaptable. They endure the most extraordinary setbacks and conditions.

So, to be with Ukrainian friends in my limited, deficient expression of solidarity, has been inspiring. No one I met had any illusions about the realities of Ukraine’s current plight (especially with a harsh winter looming as Russia systematically destroys power stations). But still they persevere.

Seeking deeper perspectives of reality

However, Eliot did not primarily refer to bearing the reality of the mundane. As the novelist Jeanette Winterson explained, Eliot was identifying how little twentieth century society (that of his Waste Land in particular) could bear of spiritual reality. He meant the phenomenon of resistance to a journey towards God or of facing themselves as they stand before God.

However, the horrors of invasion and the nightly anxieties of air raids have put paid to all that. One friend I was glad to see again is Andriy, previously a fairly well-known Ukrainian journalist and now a church pastor. He regularly goes to the frontline as an unofficial chaplain, visiting troops in their camps and the injured in hospital. He was unequivocal. Before the war they would undoubtedly have been shrugged off. But now, he has not met a single soldier who is uninterested in the things of God and eternity. War has forced them to face their mortality and Andriy has found that most are desperate to talk about little else. These things matter. Even on a beautiful, bright, early autumnal day.