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.

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Politics

25 September 2024

5 min read

Exploring Labour’s parameters of hope

At the party’s conference, meeting mayors and old friends rekindle a restless hope.

David Barclay

David is a partner with the Good Faith Partnership, collaborating on solutions to social problems.

A group of four people stand in front of an even banner, smiling

Labour mayors smiling, despite the weather.

@UKHospKate.

If weather can set the tone for events then the meteorological omens for the Labour Party Conference this year were hardly promising. By the time I’d made it to Liverpool Dockside from the train station I was already soaked and cold, and wondering if anything our new Government was going to say would cut through the gloom and kindle some much-needed hope and optimism.

The downbeat mood of bedraggled conference-goers searching for umbrellas felt like a pretty fair reflection of the wider public as a whole. A recent piece of research found that ‘broken’ was the most common word used to describe the state of the country, and if Keir Starmer had a honeymoon period as Prime Minister it has clearly already long passed. We have become used to politics as a force of chaos and division, and as the events of this summer revealed all too starkly, this state of our public life has left our communities highly vulnerable to the forces of hate and violence that lie closer to the surface than most of us like to admit to ourselves.

Yet my experience over 48 hours in Liverpool did give me cause for optimism, even if that came from some slightly unexpected places.

Mayors are uniquely unburdened by the departmental silos of Westminster and Whitehall, as well as having a direct mandate from the people and communities they are serving.

One of those was the energy of new MPs. Amongst the large intake of Labour MPs there are some seriously impressive people with a vitality and creativity that has been sorely missing from British politics in recent years. I got the chance to speak to Josh MacAlister, the new MP for Whitehaven and Workington, who is a case in point. Josh set up Frontline, a graduate social worker training programme modelled on Teach First which has had huge success in boosting recruitment into a vital part of our public life. He was then asked by the last Government to lead a landmark review into Children’s Social Care, which is without doubt one of the most broken aspects of British politics with private companies making obscene profits from providing terrible care to vulnerable children, leaving a trail of human misery and financial ruin for local Government in its wake. Now he is looking to put the review’s recommendations into practice with a Government that seems far more likely to spark radical change in this area than it’s predecessor. As a foster carer myself who has seen the human cost of the current system up close and personal, meeting Josh gave me real hope that we can do better for the most vulnerable children in our country.

The other politicians who seemed very much in the limelight in Liverpool were Mayors, who now cover more and more of our English cities and regions and are taking an increasingly significant role in our public conversations. I’ve had the opportunity to work closely with the former Mayor of Bristol Marvin Rees, and saw first-hand the incredible impact that place-based political leaders can create by convening different leaders and organisations from across the public sector, business and charities around common goals.

Mayors are uniquely unburdened by the departmental silos of Westminster and Whitehall, as well as having a direct mandate from the people and communities they are serving. So seeing increasing amounts of resource and powers flow to Mayors is undoubtedly another cause for hope.

One of my areas of passion is refugee and asylum inclusion, and I was part of several conversations over the Conference on how Mayors and other regional actors could play a bigger role in this policy area. As Marvin Rees used to say as Mayor of Bristol, city leaders see the issue of migration and human mobility in a fundamentally different way to national leaders, because nation-states are defined by borders and therefore constantly obsessed with controlling them, whereas cities by definition exist due to the movement of people, good and ideas, and are therefore much more interested in how policy can lead to greater welcome and connection in order to harness the strengths of having a diverse population. It is this kind of mindset and perspective shift that having stronger Mayors could bring into British politics, and to me at least it feels like a breath of fresh air.

History teaches us that really significant change happens rarely from the top down but rather through constellations of leaders and organisations with similar worldviews but distinct resources and perspectives.

My final source of optimism for change came not for politicians at all but from the friends and colleagues I was able to catch up with or bump into. Having been around the world of politics for nearly two decades, things like Party Conferences are a lovely opportunity to touch base with people I might not otherwise get to see.

Over lunch with an old friend from the Bristol Mayor’s Office, we were reflecting on how being part of a wider political movement can create opportunities for collaboration and mutual support over the years and in different professional and personal contexts. As someone whose ancestors were actively involved in the Abolition Movement and the Clapham Sect, I often find myself thinking about the social dynamics of change and how movements and coalitions grow and evolve. History teaches us that really significant change happens rarely from the top down but rather through constellations of leaders and organisations with similar worldviews but distinct resources and perspectives. At a time when it often feels like party politics lacks the imagination and courage to really answer the demands of the time, I find real hope in this idea that we can all organise ourselves and our institutions for change, and we all have a responsibility to build a stronger web of relationships to make that happen.

So, if like me you are longing for some positive change in this country, I think the Labour Party Conference did have some real signs of hope. But it’s not a passive hope that somehow having ‘the grownups in charge’ will by itself guarantee real progress. Instead, it’s a restless, active hope that says nothing will happen without us making it happen, and particularly joining the dots between people of goodwill to build something better than our status quo.