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

Comment

General Election 24

Politics

20 June 2024

4 min read

What small boats tell us about belonging

Do I belong to these politics? And do these politics belong to me?

George Pitcher

George is a visiting fellow at the London School of Economics and an Anglican priest.

A grainy surveillance picture of an rusty boat overloaded with people

A small boat overloaded with migrants.

BBC.

Our son used to say that “home is where the dogs are”, as he was greeted by them. It’s a variation on “home is where the heart is”. Either way, it means that a sense of home isn’t just about place or geography, so much as family and, relatedly, the familiar.

If home were simply an address, candidates in an election campaign wouldn’t bother knocking on doors to meet people. To be familiar is to meet people where they are, circumstantially as well as literally on their doorstep.

To date, the solution to the refugee crisis has been to “stop the boats”, as if our principal concern is with rubber dinghies. We’ve still not addressed the people in those boats; we’re not familiar with them, their circumstances and motivations.

I’d hazard a guess that a common desire among those who flee persecution and mortal danger is something else associated with familiarity – a sense of belonging.

The refugee belongs nowhere, until she or he reaches a new and safe home. Indeed, all of us know we’re home only when we’re somewhere we belong.

Somewheres are rooted in place and community; Anywheres are footloose and and educationally privileged. To which I would add the global category of migrants, who are Nowheres.

This is Refugee Week (17-23 June) and Thursday 20 June is World Refugee Day. It’s theme this year is “Our Home”, which is why I started this column on the nature of familiarity and belonging.

Out of which arise two questions: Do I belong to this country? And does this country belong to me? The first is fairly straightforward in a practical sense – I have a British passport and pay my taxes here, so yes I do. The second question is more complex, more of which in a moment.

When it comes to sovereign governments, the questions move from first to third person. Do you belong to (or in) this country and does this country belong to you? Again, the first question is about paperwork. The second, however, becomes crucially about exclusivity.

Exclusive ownership reaches its abhorrent nadir in a BBC2 documentary this week titled Dead Calm: Killing in the Med?, which provides evidence that the Greek coastguard has been employing masked vigilantes to cast adrift landed refugees, including women and children, in international waters and, in some cases, to throw migrants overboard to their deaths. A story told alongside the capsizing, through incompetence or otherwise, of the rust-tub Adriana, in which more than 600 migrants drowned a year ago.

These are matters for international law. But it shows where treating migrants like cargo, rather than people, takes us. It’s a mindset that could start with repellent (in both senses) wave machines, as considered by a former UK home secretary.

None of which arises if the criteria of belonging are applied. Former Prospect editor David Goodhart famously wrote that a key electoral demographic could be defined in Somewheres and Anywheres. Somewheres are rooted in place and community; Anywheres are footloose and and educationally privileged. To which I would add the global category of migrants, who are Nowheres (see above).

The key here is having nowhere to belong. Former PM Theresa May talked of “citizens of nowhere” in 2016, but she meant globe-trotting tax-exiles and the like. I mean Nowhere people, with nowhere to go – and it’s toxic for all of us that there are so many of them.

This is where the question “does this country belong to me?” carries so much human freight (like a small boat, as it happens).

To belong is an atavistic human need. American psychologist Abraham Maslow’s hierarchy of needs places belonging and love as principal needs in his pyramid between basic physicalities (such as safety) and self-fulfilment at the apex. “Belongingness”, a sense of home, is vital for human stability.

This is where the question “does this country belong to me?” carries so much human freight (like a small boat, as it happens). Simply to repel refugees like they’re someone else’s problem is massively to miss a point, because they’re going to carry on looking for somewhere to belong. So they’re going to keep coming.

Maslow identified religious groups as one of those offering a sense of belonging. I would guess as much as two-thirds of the congregation I’ve looked after over the past decade came to church for that sense of belonging, which we’re called to offer to the despised and marginalised as well as the Somewheres and Anywheres.

Miroslav Volf has written here that “God created the world to live in it” and therefore, I contend, belongs to it. So we’re called to “live in more homelike ways”, which I define as a sense of familiarity and belonging. That’s the theology of it.

We are now facing the politics of it. Nationalism is not enough. We need leaders who can solve this at a global level, which is both a political and a theological imperative.

Perhaps a way of reframing my questions, in this Refugee Week as we ponder how to vote, is: “Do I belong to these politics? And do these politics belong to me?”