Article

Assisted dying

Care

Comment

Death & life

9 January 2024

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.

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.

Essay

Belief

Comment

24 May 2024

7 min read

Everyone comes from somewhere

Why young people need to understand the religious landscape.

Roger Standing

Roger is a theologian and author with a particular interest in the relationship between faith and culture.

A young person stands in front of railway station platfrorms and below a large informaton display.

Rostyslav Savchyn on Unsplash.

I had never been so self-conscious of being British. I had flown into Denver, Colorado and for the first time I realised that I had an accent. I had gone to study and a Canadian instantly knew I was a Brit. The locals were less clear. Some had me down as an Aussie, others guessed a South African.

But it wasn’t only accents. I quickly learned the differences between us went much deeper. Private health care, guns and the separation of church and state were a whole new cultural landscape. They felt very strange to my British sensibilities that were accustomed to the welfare state, the absence of guns and an established church.

My exposure to all things American began in the early 1990s. The sociologist James Davison Hunter had just published his prophetic commentary, Culture Wars: the struggle to define America. For those I was beginning to get to know, the campaigns to reverse Roe Vs Wade and ban abortion, along with active attempts to introduce prayer into the public school system highlighted the cultural differences between us.

Likewise, they found it hard to comprehend that in England Religious Education (RE) in state-funded schools was mandated by Act of Parliament. That I considered this a bad thing mystified them.

The world we are living in has changed. Issues around religion have become more critical than at any point in my lifetime.

Of course, RE itself had a chequered history. The 1902 Education Act provided state funding for denominational religious instruction, mostly benefiting the Church of England. Nonconformist churches were outraged at the thought of the established church indoctrinating their children. Methodists, Baptists and Congregationalists withheld their taxes and, by 1904, 37,000 summonses had been issued, thousands had their property seized and 80 had gone to prison in protest.

Thankfully things have moved on. During the twentieth century denominational instruction evolved through several stages to the present world religions curriculum.

Still, over the years I have consistently felt that our approach in the UK was in danger of proving ‘the inoculation hypothesis’ with regard to faith. That is, providing a small harmless dose of exposure to religion in childhood can effectively prevent the real thing developing in adults.

Of course, faith-based schools and RE remain hot topics. Only this month the government launched a public consultation on removing ‘… the 50 per cent cap on faith admissions’. Warmly welcomed by providers like the Catholic Schools Service, it was condemned by Humanists UK and others advocating a fully secular provision.

This line of contention has become a familiar one. On one side sit around a third of mainstream state schools that are church or faith-based, most affiliated with the Church of England. On the other are groups like the National Secular Society who correctly point out that the privileged position of church-sponsored education is not reflective of wider society.

These positions have become entrenched over the years. Arguments are laced with rhetorical hyperbole and are often either ill-informed or merely raise strawmen arguments to symbolically knock down. We can no longer afford to be so self-indulgent.

The world we are living in has changed. Issues around religion have become more critical than at any point in my lifetime. It is now more important than ever that we have a handle on it.

And then there’s the frequent stereotyping of religion in the media. Off-the-peg religious reporting ‘templates’ are easy to use but are ‘lazy’ journalism.

The invasion of Ukraine by Putin’s Russia is no mere materialist land-grab. To fail to take into account the theological dimension compromises any understanding of what is going on. The history of Eastern Orthodoxy and the Russian Orthodox Church help define the Russian identity that sits behind this conflict.

In Israel, the bloody atrocity enacted on Israeli citizens by Hamas, and the brutal devastation wrought in Gaza by Netanyahu’s Israeli Defence Force are beyond words. But this conflict is theologically as well as politically fueled. Hamas embraces a militant interpretation of extremist Sunni Islam, while Netanyahu’s religious-nationalist coalition sees his Likud party kept in power by ultra-Orthodox parties and far-right religious factions.

In India, the world’s biggest democracy, 970 million voters this year participate in an election stretching over six weeks. Yet this formally secular state has been travelling on a different trajectory. Yasmeen Serhan observed in The Atlantic that under Prime Minister Modi the ‘Hinduization of India is nearly complete’.

And then there’s the frequent stereotyping of religion in the media. Off-the-peg religious reporting ‘templates’ are easy to use but are ‘lazy’ journalism.

A leading newspaper recently carried instant opposition to the thought of Kate Forbes being a potential First Minister of Scotland because of her ‘traditionalist’ views. Somehow, her commitment in a BBC interview to defend the right to same-sex marriage even though it clashed with her personal views was insufficient.

Across one of my social media feeds as I was writing this piece came a plea, ‘I’m proud to be British. I’m proud to be a Muslim. I am not a terrorist. Why don’t they get it?’

Maybe the American approach to religion goes a long way to explain something of their culture wars.

But always there is America. And here’s where a penny unexpectedly dropped for me. If you keep religion out of schools, for many young people you deny them the tools, the ideas, and a framework with which to understand the religious dimension of life. This can have catastrophic implications.

As G.K. Chesterton is reputed to have observed, ‘when people stop believing in God they don't believe in nothing; they believe in anything.’

Then, for those living within a practising religious home, the absence of religion in school heightens the possibility that their thinking is siloed purely in their own rarefied tradition.

Maybe the American approach to religion goes a long way to explain something of their culture wars.

If it's true that whatever happens in America inevitably makes its home in Britain, we need to sit up and take notice. More than ever, we need our young people to be adept at understanding the religious landscape. With the ubiquity of social media, the unseen influence of echo-chamber algorithms and the nefarious activities of those bent on radicalising the vulnerable, we need them to have the tools and skills to be aware, see and understand.

This is what has caused me to think again and, surprisingly, change my mind. We need to draw a line in the sand on our historic arguments, disagreements and differences of conviction. The situation is more pressing. We need a reset.

If democracy is not a zero-sum game where the majority gets to impose its will tyrannically on the rest, this has to be a way forward.

The encouraging thing is that the groundwork for such a step change is already in place. In 2018 the Commission on Religious Education (CoRE) proposed a reconceiving of the subject as Religion and Worldviews. Their intention was to make it more appropriate and inclusive for the twenty-first century. For them, the ‘complex, diverse and plural’ landscapes of different religions and worldviews deserved both understanding and respect. Yet, students also needed to develop the ‘necessary critical facility to ask questions and challenge assumptions’.

Such an approach embraces the insights and philosophical commitments of non-religious worldviews too. ‘Everyone has a worldview’, said the report. Nobody stands nowhere was the title of an excellent animated short film on YouTube produced by the Theos think tank.

The truth is, ‘everyone comes from somewhere’. This is as true for secular humanists as it is for cradle-to-grave Anglicans, majority-world Pentecostalists and British-born Muslims. Helpfully CoRE defines a worldview as:

… a person’s way of understanding, experiencing and responding to the world.

The report maintained that it was vitally important that different worldviews were understood as ‘lived experience’. This was not just about abstract beliefs, doctrinal understandings and theoretical convictions. This was about real people, the lives they live and what is important and gives meaning to them.

If living in a genuine democracy is about learning how to rub along together. If it is about understanding and respecting those who have a different take on life than we do, no matter how ‘odd’ it seems. If democracy is not a zero-sum game where the majority gets to impose its will tyrannically on the rest, this has to be a way forward.

Given the challenges that face us, it seems to me that not to change our approach to RE would be negligent. Yet to remove all reference to religion from our schools risks our young people falling prey to manipulation, subversion and control by bad actors, misinformed activists and cranks.

These would be the seeds of our very own culture wars.

Personally speaking, I’d rather not go there.