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.

Article

America

Conspiracy theory

Culture

Politics

9 July 2024

6 min read

When America presses in on you

A returning American feels the heat generated by contesting ‘realities'.

Jared Stacy

Jared holds a Theological Ethics PhD from the University of Aberdeen. His research focuses conspiracy theory, politics, and evangelicalism.

A runner passes a church and a flag in an America suburb, under billowing clouds.

Nick Jones/Midjourney.ai.

There’s a man. Running. My eyes snap into focus. Time slows - I catch his pace. Then, my eyes start widening. An odd feeling. Being forced into it. Seconds stretched out into minutes. Taking in more, looking for more, looking down that sidewalk, on a street corner in New Jersey.

Before? I was sitting there. In the backseat of my Uber. Winding our way through New Jersey. And I’m sitting there, tired, mindlessly scrolling my phone until that moment. He’s there running.

And I see him. T-shirt. Running shorts. And I’m sitting. And—a nervous flash—he’s running. Why?

And my eyes adjust, widening, scanning, checking detail, and I’m almost seized. My mind shaking itself, coming online, no more automation. My consciousness catches up: “you’re in America,” I tell myself.

Right. I’m not in Scotland. And that man is running. Here in New Jersey. In America. And I’m talking back to myself in this silent car. I’m watching him run. I’m asking why am I slowing this down? And—it flashes—“running from what?”

And I catch up to myself. To what I was trying to say, that people in America run from shooters, too. A wave crashing, sitting in the back of the Uber, and look. Now I’m really looking. Not forced. But naming. There’s other pedestrians passing him, walking. Slowing. On the other side of the street— no fast movement. No screaming. No pops.

I start breathing. I didn’t know I stopped. He’s out jogging. The automated safety check ends. The tranquility of tyranny resumes. I’m sitting in the back of an Uber. I make a note. Be more alert at the train station.

—

People ask me how the relocation back to America has been. And I don’t know what to tell them. There’s a wide gap between the visceral sense of it all pressing in on you, and more common—but also abstract—analysis.

The experience of coming back has been oddly particular. I lived in Scotland for three years, and most of it was spent studying America. From that distance, the broad strokes of American life, the larger trajectories and dangers of our shared political decisions and religious extremism, well, they’re a bit clearer.

But coming back, America presses in on you. And the only way of talking about that, maybe, is specificity. Kerouac was always good at articulating this. His America wasn’t the rise of the military industrial complex in the 50s. It was the road, the gas station on the way from Denver, it was jazz, the dim doorways of San Francisco bars. I’m thinking of Kerouac, but also Langston Hughes. Poets and artists who in their own time, held a mirror up to America, helped us move from the “I” to the “we” as Steinbeck said.

We’re all asking a version of “what’s wrong in America?” (And, do keep asking.) But to ask that question often assumes the broadest strokes, the ones that are most clear from a distance. Which means they are, in one at the same time, the most abstract.

These realities are everywhere, and no where. They are the air we breathe. They appear to the privileged as “logical” and to the powerless as “inevitable.”

Asking after democracy, after the election, and the increasingly nebulous “the church” — I’m convinced that answering “what’s wrong in America?” in the biggest of terms is leading me to (wrongly) believe that responsibility lies among the gargantuan free-floating concepts which we use to narrate our world. As if solving the “crisis of democracy” is a conceptual problem. When in reality, it is concrete, and involves more than coalition building or political activism.

Why more? Because the choices Americans have made over the last 10 years originate from imaginations which limits the scope and scale of what is possible. This is what I mean by “America presses in on you.”

Coming back to America has made this clear. I’m more aware than ever that we can produce good answers and generate compelling analysis about America without ever asking in what way these answers or analysis are sharp enough, concrete enough to puncture the bubbles of social reality in which people choose to live and in some cases are forced to live.

These realities are everywhere, and no where. They are the air we breathe. They appear to the privileged as “logical” and to the powerless as “inevitable.” They press in on us all in their own way.

In some cases, they dull our senses. We say, “as long as our Amazon deliveries continue, as long as the streaming services work.” In some cases, they don’t just press in on us, but press down and perpetuate injustice. As Dietrich Bonhoeffer asked, “where are the responsible ones?”

The visceral shock of return is ongoing. And it hits me in strange ways, on Uber rides and in worship. American life is everywhere and I’m seeing it with different eyes.

Do I care about democratic machinery? Yes. Am I concerned about whether or not the church is, in fact, the church, and not a gear in a partisan machine? Yes. But I’m increasingly convinced that responsible living in the American situation becomes most clear, most evident as we consider the large in terms of the small.

Responsibility emerges with attention paid to the concrete and intimate. January 6 is the subject of my dissertation. But before that, in the months leading up to January 6, I was a pastor just 40 miles from DC. For me, January 6 was a local event. That particularity, that specificity, is a window into a concrete responsibility.

And now, back in this same community, I found myself distracted in a church this weekend. The man in front of me raised his hands in worship, revealing a revolver hanging on his belt. What America is this? But also, what Christianity is this?

The visceral shock of return is ongoing. And it hits me in strange ways, on Uber rides and in worship. American life is everywhere and I’m seeing it with different eyes. And I wonder what it will take to break the spell of our most cherished illusions, of a certain type of freedom — one that tells us it is Christian to raise our hand in surrender to a god who we say is loving enough to save the world, but seemingly not strong enough to deliver us from our evil.

In the end, perhaps it’s best to say that it’s been proof of a good ruining. After all, we’ve experienced nothing short of a conversion, a move closer towards peace, towards hope, that unsettles all our strategies of security and comfort underwritten by violence and oppression. This is the kingdom of Heaven. Something Jesus announced that continues to unsettle and disrupt the likes of T.S. Eliot who put it well in Journey of the Magi:

We returned to our places, these

Kingdoms,

But no longer at ease here, in the old

dispensation,

With an alien people clutching their gods

I should be glad of another death.