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

Attention

Comment

War & peace

1 November 2024

5 min read

Put poppy politics in the past and give Remembrance a hopeful future

Memory without hope will lead us to a dead-end.

Mark Gilbert

Mark is a research mathematician who writes on ethics, human identity and the nature of intelligence.

A woman walls along a war memorial wall covered in red poppies.

War memorial in Canberra.

Raelle Gann-Owens on Unsplash.

Remembrance Day is complicated. A nation shows its gratitude for the service and sacrifice of its armed forces and tries to connect to its history. Never far away, are poppy politics, along with anxiety about identity and forgetting, and fears about nationalism and militarism. Is this the way to remember?

Last November, protests in solidarity with Gaza dominated the headlines. On Armistice Day, hundreds of thousands of people marched through central London to demand a ceasefire. In the preceding weeks, there was vigorous debate about whether the march should be cancelled. There were several motivations for this: there were genuine fears of violence and extremism, and of disruption at the Cenotaph, but also questions of whether marching on Armistice Day was inappropriate or disrespectful.

The march itself was organised to minimise the risk of disrupting public commemorations of Remembrance. It started several hours after the two-minute silence and followed a route several miles from the cenotaph. It was mostly peaceful, although there were arrests for anti-Semitism, open support for terrorism and violent attacks on police officers. Armistice Day did see violence around the cenotaph, but this was from the self-described ‘Cenotaph Defenders’ who had organised a counter-demonstration against the Gaza march. The group of football hooligans and far-right EDL members gathered with poppy emblazoned banners declaring ‘Have some respect for British Heroes’. Within a few hours, the calls for respect had degenerated into violent attacks on serving uniformed officers, in this case the police.

The far-right’s adoption of remembrance symbolism can be seen as an extreme form of a wider entanglement of poppies and politics. The red paper poppy is a symbol of remembrance, but it has other connotations. For some it invokes patriotism and feelings of pride in their country, for others it represents conformity and militarism. Whether television news presenters are wearing them attracts disproportionate attention. In 2019, one Australian TV network had a very tasteless segment denouncing a rival station whose newscasters failed to wear poppies. The non-poppy wearing hosts were accused of failing in their duty to respect their country and to help preserve its culture and traditions. Regardless of the presenters’ actual reasons, this feels like a lot of baggage to load onto the delicate poppy, a symbol of quiet remembrance and gratitude.

Unsurprisingly, this has led many to question whether Remembrance Day has become detached from its original purposes. Twelve years after the death of the last British First World War veteran, there is little living connection to either of the two world wars. With this passage of time, there is a growing danger of mistaking the symbols of ceremonial Remembrance for the thing itself.

The focus of remembrance can shift away from the sheer horrors of war, from awe at the sacrifice of our forebears, and from the resolved ‘never again’ to fixing our gaze on the processed goods: the ceremonial silence, the poppies themselves and even the quality of our own emotional response.

Some commentators have suggested that organised Remembrance has served its purpose and is best forgotten, and that too much remembering is a bad thing, fuelling grudges and sectarian conflicts. Personally, I’m not convinced, but I do think our current Remembrance is missing something.

With a strong grounding in a shared past and a common hope, we would talk frankly about the times our country has fallen short without a sense of betraying our history or identity.

Reflecting on the importance and difficulty of memory, the writer and Holocaust survivor Elie Wiesel emphasised the importance of hope. Despite the horrific experiences of the twentieth century, for Wiesel it is hope that “summons the future”. Memory without hope would lead us to a dead-end, where we grip onto the past while feeling it slip like sand through our fingers. Many of the anxieties around Remembrance point to a hope deficit.

How can we remember with hope?

We need to broaden our perspective and engage better with our shared national story. We need to be grounded in our history, stories and myths but we also need to be drawn forward by the good things we have and will have. If this story is big enough then it will be a large tapestry of interwoven strands, and we will be able to generously incorporate new strands, other cultures with their own relationship to the past into it. We will also be better prepared for our remembering to deal with difficult questions about our nation’s history. With a strong grounding in a shared past and a common hope, we would talk frankly about the times our country has fallen short without a sense of betraying our history or identity. Hope would connect us better to our neighbours overseas and to the men and women who risk their lives to serve their country.

Last Remembrance Sunday, I helped our church’s under-7s make big paper poppies out of red paint and paper plates. The older children made origami peace cranes, and both the big red poppies and the peace cranes were placed by the altar. Here the focus is on remembering, but not just on our own memory. For me and countless other Christians, God’s memory is the real focus. God remembers us in our broken and war-torn world, and as Jesus, chose to join us in it, experiencing the worst of suffering while dying a painful death. All our personal and collective stories of pain, loss and sadness are met in this sacrifice. More than this, in the promises of restoration Jesus gave when He rose from the dead, they find a concrete hope.

What does Remembrance look like when it’s really grounded in hope? I think there would be a few noticeable signs. It would be less precious about itself. It would be more open to different emphases of remembrance such as the Peace Pledge Union and the white poppy, and excited about new creative expressions of remembrance like the ‘poppy walks’ organised by the Royal British Legion. More patient to the concerns of those who find the religious elements of Remembrance difficult. More integrated into our attitudes to current and ongoing conflict around the world. Most of all I hope it would make us really hungry for both peace and for righteousness.