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.

Column

Assisted dying

Comment

31 July 2024

4 min read

Polly's pop at a "pitiless God" distorts my argument

There’s more than one argument for opposing assisted dying.

George Pitcher

George is a visiting fellow at the London School of Economics and an Anglican priest.

A hand rest gently on another outstretched hand.

Alexander Grey on Unsplash.

I hesitate to have a pop at the venerable Guardian columnist Polly Toynbee, partly because I like and admire her work. And partly, in this new media environment in which my enemy’s friend is my troll, I fear aligning myself with foam-flecked righties who use words like “Guardianista” and “wokerati”.

But she wrote a column late last week about assisted suicide that was just plain wrong. And, actually, I think she’s being profoundly illiberal on the subject, for reasons I’ll explain in a moment.

Assisted suicide – voluntary euthanasia, assisted dying, call it what you will – was a hobby horse of mine some 15 years ago when I wrote a book against it. Slightly more recently, Toynbee and I were on a broadcast interview together on an entirely unrelated subject when, to the bemusement of the presenter, she suddenly raised assisted dying to have a go at me. It was quite flattering.

Anyway, last week’s Toynbee column was of a kind, dismissing the anti-euthanasia case as the province of religious nutcases (presumably like me). Consider this massive straw man of a sentence: “Only God can decide how long we should suffer before death comes at a time of his pitiless whim, they say.”

I’m used to this, though not from Toynbee. Debating assisted suicide, it’s only a matter of minutes before someone will say that I shouldn’t impose my “sanctity of life” beliefs on other people. Eh? I’ve never used that phrase in this context (whatever it may mean). In fact, my views on assisted suicide are entirely secular, though informed by a faith that respects the primacy of compassion for and defence of the most vulnerable in our society.

I believe that a jurisdiction that enshrines in its legislature the principle that some lives are more worth living than others takes us into very dangerous moral territory. Related to that, a two-tier structure for the value of human life in the medical professions is abhorrent. That’s why I say that to despatch the weakest and most vulnerable among us is unacceptably illiberal.

The terminally ill, the disabled, the profoundly depressed and the aged and vulnerable really shouldn’t be treated as a nuisance to be helped on their way.

A bill will come back to parliament to change the law to allow assisted suicide this autumn. With new PM Keir Starmer in favour and a very different configuration of the House of Commons post-election, its chances of passing are said to be high.

But even Lord Falconer, the parliamentary poster-boy for assisted suicide, who convened a ludicrous “independent” commission in 2012 stuffed with euthanasia enthusiasts and useful idiots, has accepted that no so-called safeguards can entirely ensure that no lives will be lost to malfeasance or malpractice.

So, my question to Falconer and Toynbee is this: How many unnecessary lives lost to assisted suicide is enough to have what you want? 100? 50? One? Another number?

It’s commonplace for deeply distressing accounts of agonising deaths to be rehearsed in support of assisted suicide. Toynbee did so last week. But as Falconer must (or should) know, hard cases make bad law. The only focus here should be on how best to ensure that no one need die a bad death.

For Falconer and his supporters the solution is to legislate so that terminally ill patients can be helped to kill themselves. But speaking to end-of-life medical professionals, such as Baroness Finlay of Llandaff, many of whom claim that advances now mean that bad deaths are vanishingly few, it’s clear that the UK’s world-leading palliative care has in sight the day when no one need die a bad death.

That’s no comfort to someone who is suffering at the end of their life right now. But assisted suicide puts that palliative care target in jeopardy, when it makes death a form of medical treatment. Look at the record – the Netherlands now allows assisted suicide for those who are simply “tired of life”. That’s not where end-of-life care should go.

The burden of proof under the Suicide Act (1961) lies with the defendant, who currently faces a maximum jail sentence of 14 years for assisting or encouraging a suicide. Those who have demonstrated that they have acted with compassion and consent have in turn been treated with compassion and leniency in the application of the law. Invert that burden of proof, with the Crown needing to prove that an unscrupulous relative or friend coerced a victim into suicide, and we’re into a fresh hell of moral jeopardy.

The law works as it stands. The terminally ill, the disabled, the profoundly depressed and the aged and vulnerable really shouldn’t be treated as a nuisance to be helped on their way. Again, as we might expect Toynbee to know, that is wholly illiberal.

It looks like the assisted suicide lobby will get what they want this year. It will be hailed as a great liberal social reform. Doubtless they will find it in their hearts to forgive me if I continue to demur.