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

Film & TV

18 May 2024

5 min read

Théoden and breaking the spell

Bernard Hill’s most famous role sheds light on where humanity needs to be.

Theodore Brun

Theodore is author of the historical fiction series The Wanderer Chronicles.

A movie scene of a king and prince walking confidently.

Bernard Hill, middle, in The Lord of the Rings.

New Line Cinema.

Recently we saw the sad passing of Bernard Hill, one of the great British actors of his generation, whose career enjoyed many high points. Hill came to prominence, in Britain at least, in the 1980s with his role as an unemployed tarmac-layer in the BBC series Boys From the Blackstuff. Through the 1990s, he went on to star in a number of big budget Hollywood feature films, such as The Ghost and The Darkness, Titanic, and The Scorpion King. But his best-known role, the one which won him global recognition, was as King Théoden in Peter Jackson’s Lord of the Rings trilogy.

In both Tolkien’s book and Jackson’s adaptation, the character of King Théoden plays a pivotal role in making a stand against the forces of evil advancing under the banners of first the wizard Saruman the White in The Two Towers, and then the Dark Lord Sauron himself in The Return of the King, the trilogy’s climax.

Théoden’s character arc is as heroic as any in Tolkien’s epic. But perhaps the most memorable moment within it comes when he is first introduced. Gandalf comes to Théoden’s hall of Edoras to rally support against Saruman’s rampaging armies of orcs. But instead of a redoubtable king and ally in the fight against their common enemy, he finds a weak man buckled under the weight of old age and infirmity, cowed by fear and indecision, and enthralled to the counsel of Grima Wormtongue - whom Gandalf reveals to be an agent of Saruman.

In Jackson’s version, Gandalf ‘delivers’ Théoden from his enthrallment, in effect breaking the spell of inertia and inaction which Saruman, through his minion Wormtongue, has cast over him. Théoden awakes from his bondage, is physically rejuvenated, and is now able to rise and take his proper place in the battleline against Sauron’s evil power. In Tolkien’s version, Théoden has more agency. He chooses, at last, to throw off the counsel of Wormtongue and cling to the slim thread of hope which Gandalf represents, however desperate it may seem.

It is a powerful image, and one from which we can and must learn today.

Our ears are open to so many voices through both mainstream and social media that it becomes a matter of extreme importance to be able to discern who is Gandalf and who is Grima Wormtongue?

Few would deny that recent times have revealed new and determined manifestations of evil in our culture and our world. And yet, both inside and outside the church, these latter years have also been characterised by a feeling of helplessness and inaction in the face of such evil. It’s common to hear both men and women complain that they feel unable to speak up in opposition to what they perceive as wrong. They have been silenced. Either those who dare to speak up find themselves cancelled. Or else those who don't self-censor, keeping their mouths shut and their heads well below the parapet. Like Théoden, they lock themselves away in their hall. In this latter case, the battle is ceded without ever having drawn a sword.

As the famous Edmund Burke quote goes: ‘The only thing necessary for the triumph of evil is for good men to do nothing.’ Much of the church, some might dare to say most of it, resides in this place of cowed inaction. Enthralled and confused by the Wormtongue whisperings of the media as mouthpieces for agendas diametrically opposed to the good, we have willingly subjected ourselves to this spell. And the consequence? Like the Westfold of Rohan, the land is burning.

It is not controversial to say anyone who cares about our culture and its future needs to awaken from their slumber. Needs to cast off - or else have cast out - the gag of silence. But what is more troubling perhaps is that, even having done that, we cannot agree on what is evil and what is good.

In the Bible, the devil is portrayed as often masquerading as an angel of light. And it warns against the descent of some cultures into a state of such moral confusion that God’s ordinances are inverted: good is called evil, and evil is called good.

So how are we to navigate our way through this mire of uncertainty? Warnings against misinformation and disinformation abound. And yet, those in positions of power who proclaim them may equally be charged with propagating untruths and dissembling realities, all for the sake of shoring up their own power structures.

All this is to say - our ears are open to so many voices through both mainstream and social media that it becomes a matter of extreme importance to be able to discern who is Gandalf and who is Grima Wormtongue?

Tolkien’s choice of the name Grima Wormtongue is significant. ‘Grima’ derives from the Old Norse word, grímr which means ‘mask’. ‘Worm’ similarly derives from another Old Norse word: ormr which means ‘snake’ or ‘serpent’.

As such, it throws us right back into the Garden of Eden and the honeyed words of the serpent which led humanity into such disaster, offering some purported good up front, while concealing the calamity (and shame) which comes hard on its heels. If we are to stand up and contest the modern manifestations of evil, we must be able to recognise the side of the field of battle on which to take our stand.

Who is Gandalf? In Tolkien’s world, though he hated the idea of his work being interpreted as allegory, Gandalf does represent the Christ figure. And Sauron in turn suggests the Anti-Christ - a nebulous figure arising from scripture, poorly understood at the best of times. But somehow the fountainhead from which, humanity is told, all evil must flow.

But if humanity thinks of Christ on the side of good, and Christ as the most human of us all, perhaps this provides a yardstick by which we can discern the lines of battle.

Is it human or anti-human to stand up for life at its most vulnerable? Is it human or anti-human to stand up for the family unit? Is it human or anti-human to honour and celebrate each and every Imago Dei as they were created to be? Is it human or anti-human to safeguard a parent’s right to speak good into their children’s life? Is it human or anti-human to preserve the innocence of our young? Is it human or anti-human to challenge systems of power which enable all kinds of exploitation and other self-evident evils?

First we must awaken. Then we must choose our side. And finally, like Théoden, we must ride to the fight.

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