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.

Explainer

Comment

Death & life

7 August 2024

6 min read

Dying well: what is neglected needs to be put right

How each of us can prepare ourselves and those we leave behind.

Matthew Hutton

Matthew is the author of Your Last Gift – Getting Your Affairs in Order.

A group of grieving friends with their hands on each others backs.

The Good Funeral Guide on Unsplash.

In their November 2023 Theos report Love, Grief and Hope: Emotional responses to death and dying in the UK, Madeline Pennington and Nathan Mladin produce the surprising finding that, over the past year, one quarter of Brits had thought about their own death at least once a week. They go on to consider related emotional responses, chiefly fear. But, however often we think about death (maybe never), what do we do to prepare for the certainty of it, when we are used to making all sorts of preparations for practically everything else in our lives?

First, we can, without being morbid, live our lives in broad terms in the consciousness that we are mortal (and, if you will forgive me as a classicist for delving into Latin, living ‘sub specie aeternitatis’ which means ‘from the standpoint of eternity’). Second, there are things we can do in terms of getting our house in order, both for our own peace of mind and for the benefit of our loved ones and those we leave behind. This is both spiritually and materially, though I would want to argue as a Christian that the whole of life (whether in this world or in the next) combines both aspects.

Having had quite a feisty and competitive brother/sister relationship (with not a little ribbing from her about my own faith), we came to enjoy the warmest possible sibling love for and appreciation of each other.

My dear sister Debbie died aged just 49 in July 2005. She had telephoned me only eight months before to tell me of the grim diagnosis of stage 4 lung cancer, saying that there were two things she needed to sort out: her will and her relationship with God. I replied (as a Christian and as a private client lawyer) that we could sort both those out. I referred Debbie to a vicar I knew in a church round the corner from where she lived. She was a bit hesitant, saying that, having kept God at arm’s length for all her life, wasn’t it a bit presumptuous now to be knocking on the vicar’s door? I suggested that she should think of it from his point of view, in terms of job satisfaction: that after all was precisely what he was there to do, telling people about God and helping them to find a personal faith.

So that’s just what she did, coming to that faith herself following time with the vicar, with me and with other friends, in the February. And she died as a self-proclaimed Christian five months later. For me, the most precious thing apart from knowing that she would be with Jesus forever was this: having had quite a feisty and competitive brother/sister relationship (with not a little ribbing from her about my own faith), we came to enjoy the warmest possible sibling love for and appreciation of each other.

Second, my mother, whose ideas of Christianity were never terribly clear, though she was a very faithful listener of my sermons, came to faith (as I saw it) just 12 days before she died in May 2010. It was at a home communion given by one of the local clergy team that, as she received the bread and/or the wine (I forget which), a most powerful voice within my spirit told me that she had received Jesus. And that night, by way of confirmation, my wife Annie had a very clear dream of my mother (it had to be her, wearing her most distinctive pink kaftan) dancing at the foot of the Cross.

We lived just five minutes from Mum and, again, my early evening visits to see her, to chat, to read from the Bible and to pray were somehow transformed. While I am not sure that she had the same clear consciousness of having moved from darkness to light as had Debbie, I was quite clear that she had – and noted in my prayers at her funeral that at the end she had received Jesus.

Third is my very close friend Jim who died aged just 67 in November 2020: I had talked to him about the Christian faith on a number of occasions, but he simply didn’t want to know. Then just one month before he died, in a telephone conversation with him in hospital Jim asked me to explain it, from a position of dire physical need and wanting to hear. I didn’t know how ill he was and, having explained the essence of Christian belief in very simple terms, prayed with him over the telephone.

As it happens, Jim survived another month at home, during which time I was able to visit him four times and (now having been ordained) give him and his Christian wife Judi Home Communion, as well as pointing him to and talking about Mark’s Gospel and praying with him. His new faith led to a new intensity in our friendship. Jim was quite clear about his new relationship with Jesus, seeing himself as the lost sheep, on which I preached at his funeral, before (as a profoundly moving experience) conducting his burial.

None of us of course knows for sure what happens after death. But Christians are by God’s grace given this ‘sure and certain hope’ of an eternity to be spent with Christ in God’s new creation. And it’s the clear Christian message that that eternity starts now, when we come to faith. There’s a new relationship with God in Christ and, which is my experience, with our brothers and sisters in Christ, especially precious when those folk are close to us anyway.

And then of course, perhaps most importantly, what is broken needs to be put right.

That’s the spiritual aspect. What of the material – by which I mean all the practical ‘stuff’: those who are left behind having to sort out our possessions, Inheritance Tax where payable and a whole host of other things? It is a subject touched on in the Bible, perhaps surprisingly. Consider Paul writing to Timothy that a person should provide for their relatives and especially close family), which I take it would include post-death as well as lifetime provision. And then supremely of course Jesus in providing for his dear mother by entrusting her to his beloved disciple John.

In this context, I can do no more than make a few pointers, which with other suggestions I develop in my book.

There are what I call ‘The Three Essentials’: Lasting Powers of Attorney in case of mental incapacity (for both property & financial affairs and health & welfare), Wills (including the all-important choice of executors) and funeral arrangements. Just 44 per cent of UK adults have made a will.

Then there’s a host of other things, including appointing guardians for any minor children, providing for dependent relatives and making arrangements for pets. What about access to digital assets, for example? Let alone dealing with things about the home.

And then of course, perhaps most importantly, what is broken needs to be put right - relationships, where forgiveness could be sought or given. And, more widely, are there people you want to spend more time with, things you want to do or places to visit?

My suggestion is that dying well embraces first of all the peace which comes from the belief that Jesus has died the death my sins deserve and consequently a restored relationship with God our Heavenly Father; and second, making what practical arrangements we can in advance, to ease the stress of those we leave behind in sorting out our affairs.

Matthew Hutton is the author of Your Last Gift – Getting Your Affairs in Order.