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. Radio 4’s 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.

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Life & Death

8 November 2023

4 min read

What they don’t tell you about when someone you love dies

Sharing her experience of her husband’s death, Yvonne Tulloch charts grief’s journey and shares signposts to help. Part of the How to Die Well series.

Yvonne Tulloch

Yvonne Tulloch is Founder and CEO of AtaLoss, helping bereaved people find support and wellbeing.

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

The Good Funeral Guide on Unsplash.

Turn on the news and death is all around us. Yet somehow, we think it will never happen to us. In one sense that’s good. We have a child-like innocence that protects us from the harsh realities of life.

A few years ago, as a church minister, I thought I knew about death. I’d been trained to take funerals and had supported families when a loved one had died. But it wasn’t until I was bereaved myself - when my husband died suddenly of a heart attack - that I realised how little even I knew.

Although busy, life had been good until then. My husband had a successful job, my own work was going well and our three children were flying the nest and finding their feet in university. Little did I know that in one, short phone call from a colleague, our lives would change forever.

Simon had been found dead in his hotel in Spain, and I was faced with telling each of the children and his mother, the worst news anyone could convey. Concerned about social media the news was embargoed until all family members knew, then I had to go to Spain to find, as well as identify the body, and bring him home. I had to work out our finances – no one knew what we had to live off – close accounts and put things in my name. I discovered our house wasn’t insured, nor our car for me to drive, that bank accounts were frozen, and that no organisation is geared up to help. Everyone insists on speaking to the account holder or seeing the actual death certificate before being willing to oblige. I had a funeral and thanksgiving to organise – two big occasions in just 3 weeks - and a mountain of admin to deal with, which would be difficult at any time.

Grief is a journey of adjustment of who we are to a new existence – one that takes a long time and never comes at a convenient time.

We’ve been a death-denying culture, I now realise, for many years. With death invariably happening in hospices or hospitals, we’ve pushed death away and pretended it doesn’t happen. Consequently, we’ve lost knowledge of bereavement and the art of support. We’ve tended only to think about preparing for funerals and then counselling if the person isn’t doing well. But what about all the other help that’s needed? Understanding and support is necessary in all manner of ways. Bereavement is one of the most stressful times of life, affecting everyone sooner or later and every part of their life. Grief is a journey of adjustment of who we are to a new existence – one that takes a long time and never comes at a convenient time.

At first most of us are shocked or emotionally numb; we run on adrenaline and we’re in survival mode. At the funeral others can think we’re doing well, and we can too. But it’s after, when the real sadness tends to hit, when the future must be faced and by then support has dropped away.

Many of us experience a roller coaster of changing reactions and responses which we don’t recognise as us or don’t associate with grief.

There are the physical reactions, for instance. I couldn’t eat, I couldn’t sleep, I was cold and I shook for months, I had a heavy ‘weight’ in my gut and was taken to hospital three times with suspected heart problems - our bodies are always in tune with our emotions.

And there are the psychological reactions. We can experience anxiety, anger and guilt; we can’t concentrate or remember, or function to do the most basic of tasks. I kept thinking I was seeing Simon and had a psychosis which made me feel separated from the world. We can think we’re going mad.

Grief is a natural response to loss which we need to work through for our future wellbeing.

For me help came from two initiatives I was fortunate to find: Care for the Family’s Widowed Young Support and The Bereavement Journey course run by a church in London. In each of these I discovered others who had been bereaved, who understood what I was going through and who helped me to navigate the alien territory I found myself in. They also helped me to understand my spiritual responses which had been the biggest surprise. I had never doubted my Christian faith but with bereavement, that too was challenged, and God, who had always felt present, suddenly disappeared. I realize now that this is natural. Grieving is a process of deconstruction and reconstruction of meaning, and therefore some of whatever meaning we had before the person died, will deconstruct as we grieve.

Roll on a few years and I’m on the other side, running a charity helping people to understand that in our death-denying society bereavement impacts greatly, and that grief is a natural response to loss which we need to work through for our future wellbeing. Support is needed in various ways which we direct to through our signposting website ataloss.org. And I’m helping people myself through The Bereavement Journey course to find healing and hope, offering also spiritual support for the faith questioning I find most people have. Unfortunately, though, because we’ve neglected death, many haven’t been supported through a bereavement in the past and are carrying loss which is unresolved.