Article
Assisted dying
Care
Comment
Death & life
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.
An image of a woman wearing formal clothing is overlaid by a BBC logo, a programme logo, a sound wave illustration and a caption.
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
Biology
Comment
Wildness
5 min read

There’s a sting in the tail if we construct lessons from nature

Don’t be like the bees

Juila is a writer and social justice advocate. 

A bee keeper hold honeycomb to the light
HiveBoxx on Unsplash.

‘Be like the bees’ we hear not infrequently. These furry hive dwellers have been coopted by many, from socialists to capitalists, to put a point across. One party draws on their social structure as an inspiration, another their worker bee ethic. They are indeed an example to us. And yet at the same time, bee communities do things that we would find reprehensible in fellow humans. Male bees are expelled from the hive when they are no longer considered reproductively useful. The bees we see out and about this summer are often the oldest, sent to do the dangerous foraging work because they are considered the most expendable. This was a jarring discovery for me, reading it in Katherine May’s timely book, Wintering, during the first COVID-19 lockdown. I was one of the millions shielding and being protected by the ways that society shifted to serve the most vulnerable to the virus; bees, I had just learned, would not behave like this. There are some limits, it seems, to the lessons we construct from nature.  

For we do love to construct them. Spend a moment on LinkedIn or Substack, and there are a multitude of articles drawing lessons from the world around us and the creatures we share it with.  

This impulse is not new; throughout history, people and communities have done this. People’s relationship with nature is not static or homogenous. The wilderness has been variously a place of fear to be avoided, of growing wonder as described by the Romantic Poets, a site of knowledge neglected by those in power but maintained by others, often women and indigenous communities.  

What strikes me about the current trend is that it seems to push to an extreme of unquestioning veneration: nature is perfect and our whole teacher. There are posts about perfect harmony we should emulate, or a call to copy an endless adaptability. These are the things that we might long for – but do not seem to be borne out in ecosystems where sea urchins demolish kelp forests, and the climate crisis reveals the limits of species to adjust. We are being called to see what we want (or feel we need) rather than what actually exists in the world around us.  

This instinct to carve lessons from creation extends beyond the natural world to the work of human hands. The Japanese art of kintsugi, repairing broken pottery with gold, has become increasingly prevalent as a metaphor for healing; a beautiful idea but one that risks being stripped of its culture, and that has both limitations and dangers. In Sarah Perry’s novel, The Essex Serpent, Cora’s husband Michael masks his abuse by speaking in a romantic metaphor of his intention to break her down and mend her with gold, like the Japanese art in their hallway. But Cora is not a vase; she is woman. Michael’s breaking harms her. She only begins to repair after he is gone; it is messy, some parts seem irrevocably changed. I think of my own losses, and how healing is indeed available, but rarely as straightforward as putting the same pieces back together. To think it is so can hinder our restoration, and miss out on the transformation that may be possible. As the journalist Poorna Bell wrote after her husband’s death by suicide: “I was in some ways sadder, wiser, but also my existence was much bigger, more honest.” 

We have a great capacity to learn – and we need it to survive. As writer Andy Crouch put it in his book, Culture Making: “a human baby is the strangest and most wonderful creature this world can offer. No other mammal emerges so helpless from the womb, utterly unable to cope with the opportunity and adversity of nature. Yet no other creature holds such limitless possibility… We are hard-wired for nothing but learning. All we begin with are possibilities.” 

This ability to grow and understand and change is essential if we are to navigate the world. And in our encounters with this place, with brokenness and confusion, the instinct to make meaning, to tidy, to be able to point to something and say 'this is how we should be’ is a form of comfort. Maybe even control it. We are grappling with not just how to understand the world, but how to be in it.  

If we are always looking for the lesson, we devalue nature by prizing it just for what it can give us. 

Creation and creativity have much to teach us – they’re a testament to and the fruit of the imagination of God. But to prize them just for their lessons seems to fall into another form of extraction and to miss out on something else, something that may be a greater gift in this messy world: wonder.  

Bees moving from flower to flower are not setting out on their mission with a side hustle of education for the human race. They are being their full bee selves. Nectar is necessary; this is how it is collected. Bees share knowledge about the good plants via a ‘waggle dance’. This is how the colony persists. It is not for my benefit (though it may encourage me to a moment of playfulness).  

Writing this on my balcony, I pause when I see dozens of birds circling one thermal; a moving column of gulls and red kites that goes up and up and up. I could strive for a teachable moment (maybe something about co-existence?) but it feels not just unnecessary, but an interruption. In that moment, I was a human being in awe of birds riding the warm air; that feels like something full of beauty in itself. I worry that if we are always looking for the lesson, we devalue nature by prizing it just for what it can give us. And we miss out on the opportunities to marvel at creation itself.  

And, in calling each other to be like other creatures, we accidentally dehumanise other people and ourselves. In the face of conflict, polarisation and disconnection, to contend for each other’s humanity feels vital. And to recognise our own humanness is to acknowledge our limitations. There are parts of nature currently beyond our comprehension. Birdsong holds complexity heard by the intended audience but we can only guess at its meaning. There is something to accepting the edges of our own understanding. Sometimes we touch on truths that seem to contradict or be in tension. Perhaps they are layers that we cannot intellectually fit together but that build up a fuller, richer story that resonates in our souls. Glimpsing something of the multifaceted wisdom and wonder of God himself – and that helps us to remember who we are. A particular type of creature: a human. 

So, I won’t be a bee. I’ll keep trying to learn to be what I am: a particular human in a bigger community, world and story. Now, I’m off to admire the goldfinches, glinting in the sunshine. 

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