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.

Column

Ageing

Character

Comment

Politics

3 July 2024

5 min read

What the Joe Biden story tells us about growing older

Rather than mimicking the young, the elderly witness to a life well lived.

Graham Tomlin

Graham is the Director of the Centre for Cultural Witness and a former Bishop of Kensington.

Joe Biden holds a fist to his chest as he stands and speaks.

Biden at the CNN presidential debate.

President Biden has had a few bad days at the office recently. Time and again, he seems to freeze in public, stumbles over his words, as his voice falters and his sentences tail off. At his first public debate with Donald Trump, he looked just like a man in his eighties, struggling to remember facts, his mind not as alert as it once was. Which, come to think of it, is exactly what many people in their eighties are. And Trump is no spring chicken either. Questions around age dominate the American Presidential election like never before. This is a story of not of two elderly gents in a bar arguing over their fading memories of the past, but between candidates wanting to be the most powerful man, in charge of the most forbidding military and economic powers on the planet.

Old age creeps up on us slowly. To tell when it starts is hard to say. Yet we all know how it ends. Old age is a kind of preparation for death, a slowing down of faculties, a loss of control, a gradual diminishing of powers, preparing us for a new kind of life beyond this one. As a result, in our achievement-oriented age that doesn't believe in a life beyond death, we are tempted to ignore the elderly, shutting them away in residential homes, out of sight and out of mind.

Yet they were valued for what they were – signs of where we are all heading, their stories as object lessons for the young in how to live well (or badly).

Old age, however, is not a slide into passivity. Even as powers diminish, elderly people still have significant agency – keeping the mind active through reading, walking to the shop to buy bread, keeping in touch with relatives, even getting out of a chair as the end draws near can take as much resolve and determination as the more complex tasks of our youth, and are every bit as heroic and human as the more impressive achievements of our sprightlier years.

Former cultures respected the elderly for the experience gained, as members of the community to be looked up to, respected and valued. Teenagers were not considered as the moral arbiters of the future but as immature human beings who still have a lot to learn. The old were given pride of place as those who had gained the wisdom of years. Not that that wisdom was always apparent - the elderly can become cantankerous, repetitive and self-focused as powers diminish. Yet they were valued for what they were – signs of where we are all heading, their stories as object lessons for the young in how to live well (or badly).

The one time when we do place elderly people front and centre, is when they are able to do the things that young people can. Adverts regularly depict old people jumping out of planes, playing rugby, strumming electric guitars - doing the things that young people typically do. Old people who can pretend that they are young are praised to the hilt. Elderly people who lose their memory, their train of thought, stumble and repeat themselves are looked on with pity, not respect. When they do both it confuses us – which is why everyone is worried about Joe.

Part of the wisdom of old age is to recognise when it has come upon us, and what its distinct calling is. In a strange echo of our culture's attitude to the elderly, Joe Biden seems desperate to tell himself and others that he's perfectly capable of doing the job of President, a job that would come much more naturally to someone 20 years younger than him. Surely the wiser and more sensible course would have been to recognise the signs of time, and halfway through his presidency, to have announced that he was not standing again, triggering a leadership race among the Democratic Party so that a new candidate could be ready for the Presidential election without all the doubts about age and capacity in mind.

So, caught between ignoring old age and yearning for lost youth, how then, are we to value the ageing process? After all, one day, it will come on all of us who manage to avoid a premature death.

The main task as the years pass and the shadows lengthen, is to be there for the young,

If we remain active throughout our lives, that activity changes over time. As someone well into my sixties, approaching old age (or perhaps already in it – it is hard to tell?) I recognise my body creaks and does not adapt as it once did. I can't do all that I could in my 30s or 40s. Over time, callings change, and recognising that is part of the wisdom of life. The Christian ethicist Oliver O'Donovan suggests that the calling of old age is to "stand by the side of youth." Elderly people have the task "to show to the young how their generation, the only earlier generation to which the young have direct access, has conceived its tasks and tackled them. If the young are to form their world effectively, they will need models to inherit and to build on."

The prime task of old age is not to withdraw into some retirement village, playing golf every day, going on endless holidays, living the life we wanted to live in our 40s but couldn't because we had to work. It is not to enjoy retirement as a kind of secular heaven, a reward for a lifetime of hard work, with pleasures abounding. There may be time for some of that, but the main task as the years pass and the shadows lengthen, is to be there for the young, not to tell them what to do but to be a witness of a life well lived - or sometimes an object lesson of a life lived badly – often both at the same time. It is to be a sign of how another generation managed to navigate the complications and complexities of life and how for those who have a faith, as a witness to how God has proved faithful over time, space and the shifting sands of culture. And that involves focus from both sides. The younger need to value, respect and prize the elderly for what they offer as a model of life lived and complexity negotiated, and the old need to recognise their changing role as it creeps upon them with the passing of years.

The calling of the elderly is just as important as that of the young or even the middle-aged. Yet it is different. We need to value our older people, not because they can do the things younger people can, but because they are object lessons in how to navigate life, and how to prepare for the next one.

Getting it muddled up helps no one.