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

Justice

Redemption

15 May 2025

4 min read

The case of Peter Sullivan proves once and for all why we shouldn’t bring back the death penalty

It’s not the wrongly convicted who are redeemed when justice is done - it’s all of us.

George Pitcher

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

A court sits, with judges raised above the others.

The Court of Appeal.

Judiciary.uk.

The quashing of the conviction this week of Peter Sullivan, who served 38 years in jail for a murder he did not commit – along with the release in 2023 of Andrew Malkinson, cleared of rape after 17 years inside – are deeply shameful. They are revolting stains not only on our judiciary, but on all those who politically invigilate it and on the rest of us who elect them. We should all be deeply ashamed.

As we peep through our fingers at these terrible travesties of justice and the lives that have needlessly been wrecked, it’s natural to ask what we do next. In the absence of time travel, we can hardly make it up to Messrs Sullivan and Malkinson.

But we can grapple with what they mean to us for the immediate future. Probably the first and easist thing to say is – if I may not so much mix a metaphor as summarily execute it – that they should hammer legislatively the final nail in the coffin of the death penalty.

Sullivan would doubtless have swung for the murder of florist Diane Sindall in 1986 that he did not commit, if execution by hanging (or by other means) had not been abolished in 1965. True, rape hasn’t been a capital offence since 1841, when the penalty became transportation (which was almost as irreversible as death).

But Malkinson’s case rather makes the point: The very fact that he was still incarcerated meant that he could be released. Let’s take a case in which no such remedy was available – Derek Bentley, say, who was hanged in 1953 for allegedly abetting the murder of a police officer and exonerated, a trifle late, in 1998.

The arguments of thornproof and white-knuckled proponents of the death penalty may be as swiftly dispatched as they would wish such innocent victims to be. They were probably “wrong ‘uns” anyway. Their sacrifice would have discouraged others from committing heinous crimes. The taxpayer shouldn’t have to pay for their decades in the slammer. Well, pah. Try telling any of that to the Sullivan family.

But these are not, to my mind, the biggest issues and, enormous as they are, that must make the biggest pretty gargantuan. I wish to address the business of redemption.

But we can ransom the present to redeem our future.

Now, when I mention this word to those holding the pitchforks, prodding people they despise towards the scaffold, they usually assume I’ve come over all pious and priestly. And I suppose I have. But they invariably misunderstand what we mean by redemption.

The assumption is that the victim of the miscarriage of justice can be redeemed if they are still alive. Their life is in some way redeemed from suffering. That’s true, so far as it goes, but it’s not really what we should mean by redemption in these circumstances.

The Latin root of the word refers to the buying back, or the paying of the ransom, of a slave to enable his or her freedom. The ancient scriptural usage of the word relates often to the saving actions of the Hebrews’ God, in redeeming his people from slavery in Egypt, and to the Christian culmination of that redeeming work at the cross (totally uncoincidentally, both events are commemorated at the Jewish Passover, that first divine covenant being, in Christianity, fulfilled in the second).

The debate down the ages has substantially concentrated on to whom the ransom of that latter redemption was paid. For some, it was paid to a vengeful and wrathful God, for others to a somewhat gullible Satan, who took the bait of pay-off. Either way, a debt was paid which released humanity from bondage and slavery.

The theology of this can only be satisfactory to a proportion of people who read it, whether believers or not. The important matter is to whom the act of redemption is of value. A slave who died building a pyramid for a pharaoh doesn’t seem to have been redeemed in any more meaningful sense than the young Bentley being pardoned 45 years after he was hanged. Exoneration isn’t redemption.

In the Christian tradition, it’s significant that the compilers of the gospels and the books thereafter develop less the idea of ransom to explain the cross, than the idea of deliverance from bondage that was its result.

And there the answer, rather than the victims, hangs before us. We can’t redeem the injustice of the past, anymore than we can give Sullivan and Malkinson back their lost years. But we can ransom the present to redeem our future.

To those who claim that murderers and rapists “get off” because of “loopholes” in the law, we say there are no loopholes, only the law. And we’re all enriched when we get the law right. So, ultimately, it’s not the wrongly convicted who are redeemed when justice is done and they’re finally released. It’s all of us.