Article
Assisted dying
Care
Comment
Death & life
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.
An image of a woman wearing formal clothing is overlaid by a BBC logo, a programme logo, a sound wave illustration and a caption.
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. 

Review
Books
Comment
Digital
Re-enchanting
9 min read

Re-enchanting the anxious generation

The future doesn’t have to be horrible.

Krish is a social entrepreneur partnering across civil society, faith communities, government and philanthropy. He founded The Sanctuary Foundation.

Two teenager lean against a rail, arms crossed, and laugh together.
LaShawn Dobbs on Unsplash.

I meet many anxious people as I wait for meetings in the Palace Westminster, but one in particular stands out. As I was queueing to get through security, a breathless American man rushed over asking if he was in the right place to meet the Minister of State for Universities. Once I had reassured him that he was, and he had caught his breath, I asked him where he was from and what he did for a job. He told me he was a social psychologist from New York. 

Funnily enough, the night before, I had been reading a book by a social psychologist from New York. I asked the man if he had come across the author, Jonathan Haidt. He replied with a smile: “I am Jonathan Haidt.” 

I chuckle when I remember that chance encounter, especially considering the title of his latest book – The Anxious Generation. The book tackles a much more serious topic than queueing nerves. It claims to show, in the words of the subtitle: “How the Great Rewiring of Childhood is Causing an Epidemic of Mental Illness”.  

The Anxious Generation is a tightly argued plea to parents and educators for a radical change in the way that young people are allowed to engage with digital technology in general and social media in particular.  

It follows the line of thought he began in his book The Coddling of the American Mind which argued that ‘helicopter parenting’ has led to such a fragility in young adults that universities are no longer places of open and free dialogue, but somewhere young people feel the need to be protected from ideas they disagree with. That problem was what Haidt was preparing to discuss with the Minister when we met outside Parliament.

“Embracing all this is a desire to maintain and hand on to our children an earth that offers genuine possibilities of flourishing.” 

Mary Grey

The Anxious Generation makes a compelling case for the way we are failing a generation of children. It likens the social media world to another planet that we are all happily sending our children off to without first learning about or checking any of the risks linked with the potentially toxic environment. It concludes that as much as we are overprotecting our children in the physical world, we are under-protecting them in the digital world, thereby complicit in the resulting tidal wave of mental health disorders.   

Haidt writes:  

“Are screen-based experiences less valuable than real-life flesh-and-blood experiences? When we’re talking about children whose brains evolved to expect certain kinds of experiences at certain ages, yes. A resounding yes.” 

Haidt argues that what children need is less screen time and more unsupervised play. Some might call this the re-enchantment of childhood– a rediscovery of wonder, and simple emotional connections with freedom, food, imagination, curiosity, those around them and the great outdoors. Perhaps there is healthy therapy to be found in this re-enchantment through the sharing of art, poetry, and fantasy. Maybe a rediscovery of faith and hope can help to bring healing.  

Mary Grey, Emeritus Professor of Theology at the University of Wales in Lampeter, describes re-enchantment like this: 

“The market’s language of desire must be replaced by reflecting what we really long for, like satisfying relationships and intimacy, meaningful communities where our values are shared, with working conditions that do not create an unbearable level of stress, enough income to cover basic and leisure needs, and planning for the future. Embracing all this is a desire to maintain and hand on to our children an earth that offers genuine possibilities of flourishing. … This is not an invitation to exchange reality for Magic Kingdoms, but to become embodied kinships of women, men, children and earth creatures in a re-imagined and transformed world of sustainable earth communities of healing and hope.” 

The re-enchantment of childhood is an attractive theory. I often find myself comparing my children’s childhood with that of my own. I’m sure I played more in the garden than they do, climbed more trees, cycled more round the block, round the town, and later round the county in my spare time. I remember as a teenager getting on a bus to travel from Brighton to Durham without either parents or phones. Around the same time, I travelled to Tbilisi, Georgia with just a backpack, a map, a couple of friends and quite a lot of self-confidence. I wish that my children could experience some of the pleasures that come with fixing a bike or looking up at the stars or browsing the library to find answers, instead of just googling.  

Yet, at the same time, if my children were making their way to Durham or Tbilisi today, I would certainly make sure they had plenty of charge on their phone and all the necessary mobile data roaming rights, and I would probably WhatsApp them regularly until they arrived safely at their destination.  

Haidt presents a perfect story, one that explains all the evidence. He doesn’t mention anything that might challenge it, or anything that the doesn’t quite fit.

Haidt’s book touches a nerve. Not just because of my own contradictory feelings as a parent, but because of the shocking statistics that reflect the wider state of our nation’s children. With waiting lists for Child and Adolescent Mental Health Services at a record high, a 47 per cent increase in young people being treated for eating disorders compared to pre-pandemic, and an enormous leap in prevalence of probable mental disorder from one in nine children (in England aged 8-25 years old in 2017) to one in five (similar cohort in 2023), the mental health of the next generation is rightly highly concerning.   

The blame has been levelled in many different directions: COVID lockdowns, school league tables, excessive homework, helicopter parenting, screen time, and general disenchantment in society at large.  Some even say the increase is directly related to the increase in public discussion and awareness about mental health disorders.  

For Haidt it is social media that is public mental health enemy number one. However, he does admit he is not a specialist in children’s mental health, child psychology or clinical psychology. This has led to some criticism about his conclusions. Professor Candice L. Odgers, the Associate Dean for research into psychological science and informatics at the University of California challenges head on the central argument of Haidt’s book. She claims:  

“...the book’s repeated suggestion that digital technologies are rewiring our children’s brains and causing an epidemic of mental illness is not supported by science. Worse, the bold proposal that social media is to blame might distract us from effectively responding to the real causes of the current mental health crisis in young people.” 

Similarly Henna Cundill, a researcher with the centre for autism and theology at the University of Aberdeen, wrote last week in an article for Seen and Unseen:  

“From a scientific perspective, the argument is a barrage of statistics, arranged to the tune of ‘correlation equals causation’. “ 

Cundill and Professor Odgers are right to be sceptical. Sometimes we let our commitment to a story shape the way that we read the evidence. If there’s one thing I remember from A- level statistics it is that causation and correlation should not be confused. In his bid to add urgency and cogency to his argument, Haidt presents a perfect story, one that explains all the evidence. He doesn’t mention anything that might challenge it, or anything that the doesn’t quite fit. It is not a scientific treatise - which is both the book’s strength and its weakness.  

Nevertheless, many of the recommendations Haidt suggests are wise and helpful. Even Professor Odgers, to some extent, agrees.  

“Many of Haidt’s solutions for parents, adolescents, educators and big technology firms are reasonable, including stricter content-moderation policies and requiring companies to take user age into account when designing platforms and algorithms. Others, such as age-based restrictions and bans on mobile devices, are unlikely to be effective in practice — or worse, could backfire given what we know about adolescent behaviour.” 

Therein lies the issue. Because of the lack of evidence for the causes, all we are left with – even from the experts – is what may or may not be likely to be effective in practice.   

I wonder if this paucity of robust scientific evidence stems from the fact that the issues facing the next generation are even more complex than we could ever imagine. 

The truth is that hype, hysteria and horror are more likely to gain traction than humdrum and happy medium. 

Every generation is different from the last. My own youth in the UK in the late 1980s when I became part of the video games and micro-computers subculture was just as much a mystery to my parents and teachers.  My generation’s problems were blamed on everything from the microwave to Mrs Thatcher to the milk that we drank following the disaster at Chernobyl.  

It seems to me too simplistic to demonise the technology. It’s an easy sell, after all. In fact, whenever there is a major technical shift, horror stories are created by those who believe the dangers outweigh the benefits. Mary Shelley’s Frankenstein seems to be a reaction to the industrial revolution. The nuclear threat led to movies about Godzilla and 60-foot-tall Amazonian women. The advent of the internet brought us the Terminator films.   

The truth is that hype, hysteria and horror are more likely to gain traction than humdrum and happy medium. Yet, despite the many and serious problems, the rise of new technologies, even social media, also have much to offer, and they are not going away soon. Instead of demonising new technology as the problem, perhaps we need to find ways to turn it into the solution.  

And perhaps there are glimmers of hope. I like the fact that my children are connected to the wider world, that they know people and languages from more diverse places than I ever did. I like that they know what is going on in the world way before the 9 o’clock news. I like the fact that they are on the cutting edge of advancements I will never experience in my lifetime. I like the fact that they can get their homework checked by AI, that they don’t need to phone me up every time they want to try a new recipe, that we can grumble together about the football match in real time even when we are on different sides of the world. I like that they can browse the Bible or listen to podcasts about history while they are waiting at a bus stop.  I like the fact that they have libraries of books at their fingertips, that they can disappear into fantasy worlds with a swipe and don’t have to spend hours at the job centre when they need to find work. And I love the fact that my children and their friends are rediscovering board games, crochet, embroidery and hiking and taking them to a whole new level because they are learning these crafts from experts around the world.  

I sincerely appreciate that Jonathan Haidt cares about the real and desperate problem of youth mental health. His book adds weight to the pleas of those of us advocating for urgent investment into this area. It reminds us of the world beyond the digital borders and it gives us hope that the re-enchantment of childhood is not impossible.  

However, the solution to these complex issues cannot be found in nostalgia alone. We cannot turn back the clock, nor should we want to. The past had problems of its own.  

I would love someone to write a book that looks forward, that equips young people to live in the worlds of today and tomorrow. If, by some strange coincidence, Jonathan Haidt is reading this article and is in the process of writing that book, I do hope I will bump into him again to thank him.