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
Culture
Death & life
Politics
3 min read

Is a funeral the right backdrop for diplomacy?

Where there's an unavoidable collision between the universal and the individual.

Jamie is Vicar of St Michael's Chester Square, London.

Trump and Zelensky sit and face each other.
Ukrainian Presidential Press Service.

There’s an episode of Yes, Prime Minister where a state funeral provides an opportunity for negotiations with the French over the Channel. As ever, this particular satire has aged well. Most of the coverage of Pope Francis’ requiem mass has focused on either the ‘spectacle’ or the chance for world leaders to connect. It's tempting to think that the main stage of St Peter's Basilica was actually a sideshow to the fringe events of politicians carving up the world. With all the planning and confections that go into usual geopolitical summits, Vatican City has provided a spectacular impromptu backdrop. 

As an Anglican priest, I have mixed feelings about this. All the photos world leaders have been pushing out seem not a million miles away from the shocking taste of selfies in front of an open casket (any casket, for that matter). On the other hand, when there’s matters of life and death to discuss, there’s no better venue than a funeral. 

Of course, this presupposes that leaders have the presence of mind to acknowledge the dead body before them (not 'passed away'), rather than simply going through the motions and thinking about the photo op. But the cogs of death cannot be avoided. 

Tim Hamer, writing for the Lowy Institute, says, ‘bitter rivals can acknowledge the rituals of mortality.’ Some of the figures about leaders attending recent funerals are staggering. Pope Francis' funeral was no different. Along with those Francis prioritised - those pushed to the margins - there was also a critical 'mass' of those at the very centre of society. There were 170 delegations, including 50 heads of state, 15 heads of government and 12 reigning monarchs. Emeritus Professor of International Relations at the University of Leicester, Geoff R. Berridge writes that: 

 “Because death is always with us … there is little doubt that the working funeral is now the most important ceremonial occasion in the world diplomatic system”.   

Therefore, the off chance of bilateral diplomacy must be taken to its full advantage. 

It is precisely because, while the bodies are lowered, funerals elevate us out of the everyday, the 24 hour news cycle and the doomscrolling, that they provide us with an opportunity to connect with what really matters. Less than 24 hours before he died, the pope delivered the words on Easter Sunday: 'Christ is risen! These words capture the whole meaning of our existence, for we were not made for death but for life… God created us for life and wants the human family to rise again!' As our multilateral world order falters, the human family just might be able to rise again when the powers-that-be meet at a funeral.  

We will have to wait and see if there is any fruit from the geopolitical meetings that have taken place. We can live in hope. If world leaders learnt any lessons from the enigmatic late pontiff, they would see that he was like Teflon to the political labels people tried to pin on him. You get the impression that he was aiming for something more lasting than soundbites, quick wins and popularity. 

I would also add that funerals are for the living. Once we've brushed aside any theological quibbles over the efficacy of praying for the dead, funerals are there to help us to grieve. They help us to process loss, which is why the 'mortal remains' remain. The ancient declarations, the homily, the breaking of bread and pouring of wine, yes even the theatrics help us to situate our own lives on a world stage where we are both bit parts as well as worthy of the undivided attention of many onlookers.  

In a world where geopolitics threatens to depersonalise and dehumanise countless millions of people, funerals unavoidably collide the universal with the individual. The context of worship and thanksgiving also lifts us out of the orbital pull of the ephemera of nation-states and our own lives to discover the possibility of revolving around Someone far grander and steadfast. Just like conducting diplomacy, there's no better place to consider death than a funeral. 

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