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

Assisted dying

Care

Creed

Death & life

19 November 2024

5 min read

“Shortening death” sidesteps the real battle

We need to do more than protest bad deaths, we need to protest death itself, it's more than biological.

Tom Dove

Tom is a physician and completing a theology doctorate.

A hand drapes over the side of an object out of shot.

Michael Schaffler on Unsplash.

What is “death”? It’s surprising the term has received little attention in the assisted dying discussion so far, because more hangs on the answer than one might expect. At a press briefing, Kim Leadbeater MP stated that the assisted dying bill she is proposing is about “shortening death, not ending life.”

But what meaning does “death” have here?

The current bill defines neither “death” nor “dying.” Granted, it implies a biological definition. The bill speaks of administering approved substances to “cause that person’s death” and of capacity and decision-making around “ending life.” These fit the understanding of death with which the medical profession operates—death is the point in time when the combined functions required for human life cease. It is a one-time event, the end of physiology, and so is recognised by a combination of physical signs.

Death, then, is a diagnosis.

So, too, “dying”—though here the waters are murkier. Setting aside sudden deaths, medical talk of dying takes us out of binary territory. Dying speaks of a process, of the “terminal phase.” Within medicine a diagnosis of dying heralds the expectation that a person’s death will occur within hours or days. And so, the focus shifts. The task of care is no longer the coordinated work of investigation, preserving life, and treating symptoms. Now attention is on bringing relief to the process of dying.

The bill seems wise to much of this. Though definitions of death and dying are absent, the bill does define terminal illness—“an inevitably progressive condition which cannot be reversed by treatment” and from which the event of death “can reasonably be expected within 6 months.” And so, it clearly distinguishes terminal illness from biological death and, implicitly, from dying.

Of course, terminal illness and biological death are related. Terminal illness is irreversible, and where terminal illness leads is death. Or, you might say, it leads to the end of life. Apart from the timescale of six months, the same may be said of ageing: ageing is irreversible, and where ageing leads is death. This is why Kim Leadbeater’s comment was puzzling to me. I suspect what she really meant was “shortening terminal illness.” If so, this is confusing because, within the framework of the bill, “shortening terminal illness” and “ending life” are identical. It seems she was getting at something else.

“It seems odd that in the name of eliminating suffering, we eliminate the sufferer.”

Stanley Hauerwas

I suspect Kim Leadbeater was echoing a conviction at home in the Christian faith. That is, try as we might to keep death at a distance and restrict it to a faraway frontier, the life of human beings involves death. I don’t simply mean the biological death we witness—the deaths of friends, relatives, or even strangers. I mean death intrudes upon the way we experience life. Death is more than simply biological.

The fear of death belongs in this category. For some, the impending loss of relationships and joys casts a shadow over life, giving birth to apprehension. Death is not simply a factual matter but something that exerts power and influence. Or take disease and illness. Built into the notion of terminal illness is the idea that the sickness borne by a human body will ultimately bring about that body’s death. That body already speaks of its death. Death is making itself felt in advance.

And so, death is more than a biological event. Even living things can bear the marks of death.

This is no novel claim. The creation account recorded in the Bible says that in the beginning, there was good. But an intruder appears. In the wake of humanity’s choice to go its own way rather than the way of its Maker, death arrives on the scene. And death is an imposter—not simply a physiological fact at the end of the road, but a destructive and alien presence in God’s good world.

Understood in this way, death is not something that God intends humans simply submit to. Death is something to protest. This is why Kim Leadbeater’s comment gets at something important: this kind of death should be protested. The marks of death should not be accommodated, because they do not belong to the goodness of what God has made.

At the heart of the Christian faith is God’s own ultimate protest against the force of death. Christians celebrate that God himself came in the man Jesus to “destroy death.” This is plainly more than biological. Jesus came to free humanity from the entirety of death’s grip. Hence why, when Jesus speaks of “eternal life” he means more than endless biological existence. He means liberation from all the havoc that death brings to bear within God’s world. To the Christian imagination, the power of death must be protested because God protested it first.

The question is how to protest death. Within the framework of the bill, shortening death or terminal illness is identical with ending life. This is the only form protesting death can take.

But the Christian faith makes a far more radical claim: God alone overcame death by dying. This is the point: Jesus was the one—the only one—who emerged resurrected victor in the contest with the power of death. In seeing his death and resurrection, an unshakeable hope emerges. Death is not the victor. And this hope stands above our present experience of death—in whatever form—and, at the same time, calls us to join the protest.

Ethicist Stanley Hauerwas once wrote: “it seems odd that in the name of eliminating suffering, we eliminate the sufferer.” I have deliberately avoided discussing suffering, not least because it would take me too far afield. Yet Hauerwas has put his finger on what I’m getting at. Protesting death—in the big sense—belongs to the Christian faith. Protesting suffering and pain, economic and racial injustice, fractured relationships and broken societies, are all part of this protest. But can eliminating those who live within the shadow of death be part of this protest? I think not. The Christian faith believes there is only one who can overcome death in this way, and that is God himself—who has already done it.