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

Assisted dying

Culture

Politics

4 October 2024

5 min read

Assisted dying and the cult of kindness

I witnessed an assisted death. We need to be honest in the debate about it.

Matthew Hall

Matthew is an author and screenwriter.

A tableau shows minature figures of two people, one sitting on a life size syringe and the other stands

Etactics Inc on Unsplash.

The Assisted Dying Bill is likely to be passed into law this autumn, the government having promised to ‘rush it through’. The debate will invariably be conducted in a fog of euphemistic language in which ‘compassion’ and ‘dignity’ will feature heavily on both sides, while the main point is likely to be missed: the legalisation of euthanasia or AD, marks a tectonic shift from a Christian to a post-Christian society and should be a wake-up moment for dozing Christians.

I was recently present when my aunt, an artist who had become a Canadian citizen, died by euthanasia in her own home while in the very early stages of motor neurone disease. She was 72, divorced, living independently, fully mobile (although she had lost the use of one arm) and was laughing and joking up to the moments before the doctor (or ‘The Killer’ as her son called him) injected the first dose of the lethal cocktail. It happened at 7pm on a Tuesday evening. She had made the phone call requesting her death at 3pm the previous Sunday – yes, a Sunday. Service of a kind our NHS can only dream of.

As a reluctant witness to what I consider a murder-suicide, I was nevertheless beguiled by the relatively clean ending (although there was some disturbing gurgling that apparently occurs as a result of the lungs filling with fluid) to a life that was about to become very difficult. Her two older siblings, including my mother, are each currently several years into slow deaths from combined Parkinson’s and dementia.

I am an almost daily visitor and a secondary carer to my mother, and while she is mute, benign and seemingly contented, the toll on my stepfather and on me is enormous. I often pray for it all to be over – it’s an endless grind and her former self would be utterly horrified to see herself this way! – and yet, as a Christian, I have to see purpose in it. One thing it certainly does do, is force carers to be selfless and compassionate in the strict sense of the word, which is ‘to suffer with’.

Her decision to die was the ultimate consumer choice – she availed herself of a service that promised to free her from her ailing body as quickly and comfortably as possible.

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My aunt didn’t want the trial of becoming ill and dependent, and the Canadian government gave her an opt-out which she grabbed the instant she received her diagnosis. Confirmation by two doctors that she was terminally ill and of sound mind – almost a trifling formality – got her immediate approval. She was, to use her kind of language, ‘out of here’ a mere three months later.

How could she have been so cavalier and determined to die, despite the protests of her son, nephew and granddaughters? She was, in hindsight, a perfectly minted product of the 1960s who believed above all in doing her own thing - whatever felt right. Such notions were anathema to her Christian parents and their dutiful wartime generation but are now the norm.

Like many who came of age to the sound of the Beatles, she toured the spiritual supermarket and picked out the nice bits from Christian, pagan and Eastern religions – predominantly those that allow you to think that life is about ‘being in tune’ or feeling good about yourself. This did most definitely not include becoming immobile and having strangers change her nappy. She believed in an afterlife, ‘love’, aliens and reincarnation but definitely not in judgement or consequences for her suicide.

Her decision to die was the ultimate consumer choice – she availed herself of a service that promised to free her from her ailing body as quickly and comfortably as possible, with the added bonus of leaving her assets to her family.

The truth, as the Canadian experience demonstrates, is that AD is not a slippery slope but a cliff edge.

Polls in Canada and the UK show that the vast majority would consider this a win all round. According to Opinium, 75 per cent of British adults support AD. In political terms this a ‘bridge issue’ almost without comparison, uniting 78 per cent of Conservatives with 77 per cent of Labour supporters, yet no issue should more starkly dramatise the unbridgeable chasm between Christian and secular world views.

The sharpness of this divide has, however, been successfully obscured by the insidious (and to my mind, diabolical) Cult of Kindness that has inveigled itself into both secular and Christian space. Imitating Christian virtues, it subverts them by subtly perverting language - by using ‘compassion’ when what is meant is ‘convenience’, for example – and by making ‘happiness’ rather than self-sacrifice the highest good. This leads both sides into dishonesty and self-delusion.

The biggest pro-AD lie is that it is merely an escape route for the tiny few facing the most intolerable suffering with no additional consequences. The truth, as the Canadian experience demonstrates, is that AD is not a slippery slope but a cliff edge. It is now the fifth most common cause of death and climbing by 30 per cent each year. Every seriously ill Canadian now feels some pressure to address the option. Cases of people choosing AD out of despair, depression or at the suggestion of a lazy or uncaring State official are already numerous. Those who have signed an advance consent waiver setting a date for their euthanasia in the event of their mentally incapacity, are now being terminated. In some cases, the demented refuse to cooperate and are euthanised under forced sedation. The State is already saving money and families are saving their inheritances. Life itself has been downgraded.

The Christian side indulges in even bigger untruths. Windy episcopal speeches about advances in palliative care avoid the hard fact that denying AD involves many suffering prolonged and painful deaths while family finances are destroyed and carers worn down to a husk. The pill can’t be sugared: thou shalt not kill is absolute, not an invitation for an ethical discussion. The point is so fundamental that to avoid it and be drawn into discussing the minutiae of legislation is a betrayal of the faith.

Christians won’t save the secular world from AD and its consequences, but the current debate is an opportunity for honesty and for Christians to save themselves from the delusion that the true virtue of compassion can be inverted to justify killing.

The Christian religion began with an agonising death of a kind which its scriptures exhorts its followers not to fear. It’s a tough message: God doesn’t promise the comfort we would like in this life. We do have the means and the duty to alleviate much suffering, but death as a consumer choice is simply off the table.