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.

Essay

Comment

Justice

29 February 2024

5 min read

Dignity: why people matter

How dignity underlies our ethics and law.

Charles Foster

Professor Charles Foster is a Fellow of Exeter College, Oxford, and a member of the Oxford Law Faculty.

A pupil in a classroom looks around and into the camera.

Indus Action

You think that you matter: that you are significant. I agree with you. I think the same about myself.

We all think we are significant, and that our significance requires us to behave and to be treated in particular ways. One of the main functions of the law (perhaps the function of the law) is to regulate this sense of significance: to protect my sense of my significance and to stop it interfering with the sense of significance that others have.

A common name given to this sense of significance is dignity. It is a defining characteristic of humans. We see it as soon as we see behaviourally modern humans – who came on the scene about 45,000 years ago. We laid our dead tenderly in the earth, clutching flowers and amulets, rather than leaving them out as food for hyenas. We carved our faces into mammoth ivory because we knew that there was something about our faces which should endure. We believed that we had souls and that other things, human and non-human did too. This made eating other ensouled things a real problem. We evolved solemn liturgies of oblation and satisfaction to solve it. Our walk through life and death was elaborately choreographed, because it wasn’t proper to stomp and blunder. Comportment mattered because we mattered.

These were astonishing assertions – so astonishing that no big society has ever taken them completely seriously.

Jumping from pre-history to history, dignity, like other precious resources, was appropriated by the rulers, who said that they and only they had a right to it. The hoi polloi never truly believed this; they knew their own worth and moral weight. But the rulers told an artful story. The gods had dignity, they said, and the gods gave it to their favoured ones – typically the royals and the heroes. The royals were the gods’ embodiments or regents, and so the thrones of Mesopotamia and Egypt were invested and affirmed by divine dignity. The capricious gods of Olympus gave dignity at particular times and for particular purposes to their particular favourites, who therefore became demi-gods for a while.

In the Hebrew world, however, a radically democratic move was afoot. God was indeed dignified, but since every human was made in his image, all humans were dignified too – and in the same way as God. The idea was picked up by St Paul: ‘There is neither Jew nor Greek’, he declared. ‘There is neither bond nor free, there is neither male nor female: for you are all one in Christ Jesus’.

These were astonishing assertions – so astonishing that no big society has ever taken them completely seriously.

The obscenity of Auschwitz relegated the hyper-spiritualised notion of dignity to the cloister, and Kant’s notion to the Academy. For whatever dignity was, it was outraged there, and the outrage extended to bodies and to the non-rationally-autonomous.

Less ambitious, and so more palatable, was Stoicism’s rather anaemic version of the Imago Dei. All humans were potentially dignified, it said, and each human had a duty to strive to realise their dignified potential. It was much less radical than the Judaeo-Christian conception, but still represented a tectonic break with the royal theocracies of Mesopotamia, Egypt and elsewhere.

This Stoical conception of dignity did useful work. It served to save the notion of dignity from two mortal threats - both, embarrassingly, from the Christian world (though Kant’s relationship with Christian orthodoxy was sometimes uneasy).

There is a strand of Platonised Christianity (drawing on the early Augustine) that spiritualises the idea of dignity. If it prevailed dignity would have nothing to say in hospitals about bowels or bedpans, in bedrooms about sex, in plantations about slavery, in jungles about the fate of trees or toucans, or in newsrooms about anything at all.

Kant located dignity in rational autonomy, so snatching dignity from children, the demented, the unconscious, the depressed, everyone who has drunk a bottle of red wine, and more or less everyone who doesn’t have a PhD in philosophy.

In the immediate aftermath of the Second World War dignity (almost always undefined) appeared in endless national and international laws and declarations. Fairly recently it has started to have a real legal life of its own, being invoked for many purposes, from prisoners’ rights to reproduce to the right to have your name on your tombstone in the language of your choice.

These specific invocations of dignity sometimes disguise its foundational nature – foundational to human nature itself and to the laws that seek to determine how humans should conduct themselves in society

To say that the Judaeo-Christian account of dignity gives rise to all ethics and law in the western world is a big claim. I make it unapologetically.

To see how foundational it is, ask yourself why you think it is wrong to kick a child, but not a rock. Or why it is wrong to play football with a human head, or do an intimate examination, for the purposes of teaching medical students, on a woman in a permanent vegetative state. In describing the wrongness you will certainly find yourself relying on something that looks suspiciously like human dignity.

The law is often said to be protecting interests other than dignity (such as autonomy, freedom, or bodily integrity), or promoting other values (such as beneficence or non-maleficence). Yet on close inspection, those interests and values will all turn out to be parasitic on dignity. Dignity is the first order principle: the others stem from it.

In the last forty or so years there has been a good deal of academic discussion about just what ‘dignity’ means. There is a growing consensus that it has two complementary parts. First: an inalienable element: the intrinsic dignity possessed simply and solely by reason of being human. This cannot be lost or diminished. It just is. And second, a dignity which is a consequence of the first, but denotes how, in the light of your dignified nature, you should comport yourself. If we say of someone ‘She’s let herself down’, we mean that she has failed to behave with the dignity expected of someone who has the high status of being human.

This account of dignity is derived straight from the notion of the Imago Dei, and from Paul’s gloss. The watered-down Stoical version simply gives encouragement to behave well: it has nothing akin to the inalienable element.

To say that the Judaeo-Christian account of dignity gives rise to all ethics and law in the western world is a big claim. I make it unapologetically. Perhaps you think that it is too extravagant. But it is plain enough that this account, or one of its iterations outside the sphere of Judaeo-Christian influence (there are several), accords as does no other with our intuitions about ourselves and about how we should act, and with the most fundamental axioms of the laws in all tolerable jurisdictions. The most enlightened parts of Enlightenment thinking originate in this account, though they are often embarrassed to admit it.

Whatever we mean by the Rule of Law, part of it is that no one is above or outside it: Jews and Greeks, and bond and free, and male and female are to be treated alike. We’re so used to the idea that we have forgotten its revolutionary roots.