Hazel McHaffie

euthanasia

End of life planning

For personal reasons, time running out, end of life, setting one’s house in order, leaving clear instructions, tidying up loose ends … they’re all much in my thoughts this week. So an obituary jumped out and hit me between the eyes.

Marieke Vervoort. Belgian gold medal winner at the London 2012 Paralympic Games …

… ran the strap line. Followed by …

… who ended her life by euthanasia

Oh wow! Never seen it spelled out like this before. So why did this celebrity decide to end her life at the tender age of 40? (NB. A few details in the official obituary I have no means of verifying, so I can only repeat them on trust.)

Marieke Vervoort was born in Belgium, became a sporty child, and had ambitions to be a PE teacher. However, at the age of 14 she began to suffer repeated infections in her Achilles tendon. The eventual diagnosis? Reflex sympathetic dystrophy, a progressive disease which gradually crept up her body. The prognosis? Grim: tetraplegia. And it came with epileptic seizures and terrible pain; so bad indeed that she was often unable to sleep for more than 10 minutes a night. Imagine the toll of that little lot.

In spite of all this, Marieke fought back and has been acclaimed around the world. The list of her accomplishments is mind-blowing:
2006 – paratriathlon world champion
2007 – paratriathlon world champion
After this her condition worsened and she moved into wheelchair racing.
2012 – won gold medal in 100m sprint and silver in 200m at London Paralympics
2013 – set new European record in 200m and world records in 400m and 800m in Belgium
2013 – suffered a serious shoulder injury while racing, and was told by a doctor she would never return to her previous level. This made her even more determined to succeed.
2014 – won 200m and 1500m and 800m in Switzerland, setting three new world records
2014 – spilt boiling water on her legs after an epileptic fit while cooking – necessitating 4 months in hospital
2015 – won 100, 200 and 400m titles at the world championships in Doha
2016 – won silver medal in the 400m at the Rio Olympics after being violently sick for 30 hours and on a rehydration drip
2016 – won bronze in the 100m at the same games in spite of running a fever with an kidney infection at the time
2017 – paralysis reached her chest, vision deteriorated, finger function declined. She took up sky-diving in a vertical wind tunnel
September 2019 – fulfilled her wish to be driven around the Zolder race circuit in a Lamborghini Huracan
22 October 2019 – died by euthanasia in Belgium

A simple catalogue of her triumphs is wholly inadequate. The price for high achievements on the sporting field, even for the most physically able, is very steep. Here was a young woman coping with well-nigh impossible odds. Progressive paralysis, mind-altering levels of pain, terrible injuries. And still she came back fighting. What an indomitable spirit. The sheer grit and perseverance and endurance of arduous training and fitness building as well as competing, can only be dimly perceived.

But a ‘living hell’ was not on Marieke’s agenda of desirable goals. Aware of her prognosis and obvious deterioration, she signed up for euthanasia in 2008, giving her a trump card to hold in reserve. (NB. This is legal in Belgium.) Eleven years later she has finally played that ace. It would surely take a heart of stone to be unsympathetic to this courageous young woman’s decision. Interestingly, also this week, an interview with MP Sir Vince Cable suggested that the Assisted Dying Bill looks set for another hearing soon in this country. I wonder if Marieke Vervoort’s story will feature.

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Could I? Would I? Should I?

With all my talk of books lately you might well have forgotten that my blog is also about ethical issues. So, something a little more challenging this week.

QuestioningYou’ve probably heard on the news that a teenager has just become the first to be helped to die by doctors in Belgium, a country that lifted their age restrictions on assisted dying two years ago. This girl was 17 years old and terminally ill. Let’s stop and contemplate that for a moment. 17 years old … on the cusp of life. Terminally ill … a tragedy in itself. Now dead … hard to even contemplate the agony wrapped up in that reality. Sends shivers down your spine just thinking about it, doesn’t it?

Belgium legalised assisted death for adults as long ago as 2002. And in 2014 it became the only country* in the world that allows a child of any age to choose doctor-assisted death provided they have parental permission. There are strict criteria; of course there are. The minor must be terminally ill, fully and rationally understand the difference between life and death, face unbearable physical suffering that can’t be alleviated, and have made repeated requests to die. Two doctors, one of whom must be a psychiatrist, must give their approval.
(*The Netherlands permits children to have an assisted death but requires them to be aged 12 or over.)

How do you feel about this ruling?

Would you allow your child to choose to die?

But hang on a minute. Let’s not rush to judgement without properly assimilating the facts. This is not some wilful youngster throwing a hissy fit and whining about a passing ache. This is a wise-beyond-their-years person who’s known extreme and unremitting pain, who knows he/she’s not going to survive this illness. Given these circumstances, could you bear to stand by? Listening to the agonising screams? Seeing the appeal in the eyes? Watching the dying process be strung out, knowing … knowing there’s a way out, a legal option? Wouldn’t you be begging someone to do something … anything?

An opinion poll taken a few months before the law changed to allow children this choice, suggested that 75% of Belgians supported it. Understandably many churchmen, especially those of the Roman Catholic church, opposed it. OK, we know they have strong opinions and beliefs about the sanctity of life. But so too did many doctors. What does this say? They after all are the ones who care for these tragic families, make decisions about treatment, convey the bad news, feel their own powerlessness. This isn’t theoretical for them; they actually stand at those bedsides, see the agony up close and personal.

Could it be that the doctors baulk at a law that allows the life of the child to be ended actively, because they are the very people who’d be asked to actually do the deed? And they are trained to cure, not to kill. It’s so much easier for a lay person to say, ‘Oh yes, a child shouldn’t suffer unbearably; you should help them to die with dignity,’ when they know they will not be the ones called upon to inject that lethal drug.

So, maybe the question ought to be: Would you be willing to end that life yourself? And if not, is it hypocritical to approve of a law allowing assisted dying?

If so, how many of us are guilty as charged?

I’m ridiculously squeamish. I struggle to kill an insect or an arachnoid, preferring to capture them and return them to the wild. There’s something very, very special about life, especially a human life. And I’m absolutely certain I could not be actively involved in the death of a child … or … am I? Because the alternative appalls me. What right have I to insist a child endures terrible suffering? I’m not at all sure I could stand by and not do something to help if it were in my power. Maybe, just maybe, there are certain circumstances where I might feel compelled to forfeit my own comfort, my own preferences, even possibly my own principles, and put the child and his/her interests first. Whether or not I would actually do the deed is unknown. I’ve never been tested.

We haven’t come close to approving assisted dying for adults in this country yet, never mind for children. The majority of – not all – doctors and politicians oppose a change in the law. But we all ought to thoroughly consider the options and consequences nevertheless. I’m not, thank God, facing this devastating dilemma at this precise moment. You might not be. But there are too many families for whom this is no hypothetical question; this is their ongoing living nightmare. What kind of a society do we want for them?

As the late Sheila Bloom, Chief Executive of the Institute of Global Ethics once said, ‘It isn’t about knowing right from wrong – we can all do that. It’s often about choosing one right over another and finding good reasons for it.’ Or we might add, sometimes choosing the lesser of two evils.

Sobering questions for an autumnal Thursday morning, huh?

 

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One True Thing

Early May it may be, but summer has arrived with a vengeance in my neck of the woods, so I seized the opportunity and took a fresh book into the garden to soak up the vitamins. One True Thing by Anne Quindlen. It’s about mercy killing so very much in my field of interest; just the ticket, then. Hmmm. I note that it was published in 2011 so I’m not sure why it’s taken so long to come to my attention. Anyway …

One True ThingWe know from the outset that Ellen Gulden is arrested and sent to jail accused of willfully killing her terminally ill mother, Kate. We also know that she didn’t do it. First person narrative: ‘I only wished I had.

Ellen is a journalist (like Quindlen) living an independent life when her mother is diagnosed with untreatable cancer. Under pressure from her father, she returns home to help look after her, resentful that her Professor-of-English father sees no need to give up his life, annoyed with herself that she still seeks his approval. Nor is he the one to offer bail to free her while the case is prepared; her erstwhile English teacher not only does that but offers her sanctuary too.

Caring for her mother isn’t any easier than Ellen anticipated. Kate Gulden’s deterioration is swift and brutal; the author doesn’t skimp on the unsavoury detail. She has to take large doses of morphine to deal with the pain. When the oncologist orders an autopsy, no one questions the means – the morphine was there in large doses, legitimately supplied by the visiting nurse. And the odds seem stacked against Ellen. It’s common knowledge that she is in favour of mercy killing; her prize-winning schoolgirl essay is trumpeted far and wide in the press. Plus she was the last person to see Kate alive. And she wanted this phase to be over, to get back to her old life; plenty of people can and do give testament to that. The evidence appears damning.

So, if Ellen didn’t administer the overdose, who did? And that’s what the book explores. Ellen herself is pretty sure she knows, but I’m not going to spoil it for you by giving away any more of the plot.

However, the book offers more that a whodunnit. It challenges the reader with some profound thoughts.

We cry to give voice to our pain.’

‘It’s so much easier to know just how you feel about things, what you believe, when you’re writing it on paper than when you really have to do anything about it or live with it.’

‘And knowing I could have killed her was nothing compared to knowing I could not save her.’

‘When your mother’s gone, you’ve lost your past. It’s so much more than love. Even when there’s no love, it’s so much more than anything else in your life.’

Would I have ended that awful pain, indignity and suffering if someone I loved begged me to help?

Oh and I loved this sentence: ‘My father’s regular features had lost flesh in some places, sagged in others, his rather thin mouth becoming more of a liability as the parentheses of middle age appeared around it.’

So no new arguments for me personally, but a very readable rehearsal of the old ones.

 

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Amour

I hinted last week that I’d like to tell you about another dramatic exploration of an ethical issue which impressed me. So here goes.

Now, as you know, I’ve read a mini-library-full of books about suffering and the right to die and euthanasia and related issues, but the film Amour is one of the most affecting explorations of the topic I’ve encountered. I want to share it with you, but I should warn you that this blog does contain spoilers.

AmourAmour is in French so I needed the subtitles, but that didn’t detract from the power of the story. It centres around an octogenarian couple, Georges and Anne, retired music teachers, facing the horrors of Anne’s debilitating and progressively diminishing illness. It’s been described as ‘one of the most honest, intimate and deeply affecting portraits of love ever committed to film‘, and it has deservedly won many awards – including an OSCAR and 2 BAFTAs.

Curious really, you might think, given the age and condition of the main protagonists (they’re both in their eighties in real life as well as in the film), the rather slow pace, and the subject matter. But the elderly couple are played to perfection by Jean-Louis Trintignant and Emmanuelle Riva. Indeed flashbacks to earlier days when Anne was a beautiful and accomplished pianist come as quite a shock, her disabilities are so utterly convincing.

The opening sequence grabs you by the throat: a brigade of firemen and police are breaking down the doors of an elegantly proportioned though rather run down apartment in Paris. Behind a taped-up bedroom door they find the decaying corpse of Anne laid out on a bed surrounded by flower heads.

The onset of her illness is poignantly captured: Anne suddenly goes blank at the breakfast table and fails to respond to Georges. He initially thinks she’s playing a prank on him, and his amateurish attempts to revive her are an early indication of his unreadiness to take on the role that’s thrust upon him. When she comes out of her catatonic state she finds herself unable to pour a cup of tea. The dawning realisation seen in her face is haunting. What must it be like to be a brilliant musician and suddenly, without warning lose control of your hands?

She undergoes surgery to unblock her carotid artery, but something goes wrong, and she’s left paralyzed down her right side. After her first hospitalisation she makes Georges  promise to keep her out of any institution thereafter. That promise exacts a fearful toll on him as she suffers subsequent strokes and increasingly loses mental and physical control, and we watch him being tested beyond his capacity with growing dread. Verbal expression of his feelings is kept to a minimum, increasing the sense of his isolation.

Anne herself initially makes a spirited attempt to live with her disabilities, and the scenes of her determinedly finding ways to cope with simple tasks using just one useful hand, or learning to drive her motorised wheelchair, spell out her dogged determination to get on with her life. Indeed it’s Anne herself who initially guides Georges as to how best to assist her. But we can’t forget the enormity of what’s she’s lost, and we can’t but sympathise with her when she says she doesn’t want to go on living.

Georges’ rather bumbling attempts to pick up the tasks of domestic life and Anne’s care reveal with great sensitivity both his fundamental devotion and his present unease. But his love becomes increasingly streaked with irritation as she grows more fractious and incoherent, and he becomes frailer himself, until one day he loses his temper with her.  Hard to know who is more shocked.

Their daughter, Eva, (just visiting) exerts pressure on him to put her mother into care, but Georges categorically refuses to break the promise he made to his wife. Eventually though, he concedes that the burden is too great for him alone and he employs first one nurse for three days a week, and later a second nurse. But Georges then momentarily metamorphoses into a much more robust fiery character: he finds this latest recruit has been ill-treating her patient, and he calls down a curse on her that she be similarly treated in her dependency.

Anne’s pitiful crying for help, her incontinence, her inability to convey her wishes, the increasing indignities her elderly body is subjected to – none of the horrors are shirked by these fine actors, or the director, Michael Haneke. And it’s almost a relief when Georges sits down to calm his wife’s distressed crying by telling her a story taken from his youth. His soothing tone, his body language, the gentle stroking of her good hand … we are lulled into a sense that he has at last found a way to deal with the impatience and intolerable demands. The mournful cries do gradually diminish and stop, Anne lies perfectly still, only her blinking eyes reminding us she’s listening: it’s both touching and comforting. So the suddenness of his action (picking up a pillow and smothering her) takes one by storm.

After the act, Georges himself calmly sets about completing his self-appointed responsibilities. He buys flowers which he washes (not sure why) before snipping off the heads. He selects clothes for Anne. He sits down to compose a very long letter, working well into the night. He shakily climbs a ladder to tape the bedroom door shut and then spends ages tottering round after a pigeon that has flown in through the hall window. He tries to catch it in a blanket, and I confess I thought he was bent on violence towards it, but no, the real Georges is still there, doddery and clumsy, but still capable of compassion and logical thinking. He caresses the bird tenderly in the blanket as if its flickering life is a comfort to him, before he releases it. The symbology, though obvious, is pitch perfect.

Anne’s ghost pervades the apartment. Georges sees her vividly everywhere, rejuvenated now, active, independent, in charge. When she prepares to leave the house, calling to him to bring a coat, he follows her out of the apartment one last time and is not seen again.

The final sequence takes us back to the beginning, as daughter Eva wanders through the now-empty and silent apartment, remembering, thinking.

Though, as a film, Amour has garnered immense praise, inevitably some have criticised the showing of a controversial act of mercy?/killing. I’d recommend that you watch the whole film before making up your own mind about the right/wrongness of portraying Georges’ solution so graphically – or indeed about his actions. It’d be money well spent. And whatever you conclude, I’m sure you’d agree it’s a powerful way of stimulating thought and discussion on a vexed question.

 

 

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Be careful what you wish for

Well, my latest novel, Over my Dead Body, has finally left my safekeeping and gone out into the big old world for review. It’s always painful to make that leap. As the adage goes, Perfection is always one more draft away, and I could tweak for ever. But there comes a point where you have to say enough’s enough and let it fly the nest.Manscript of Over My Dead Body

However, the characters are still very much living here with me. I keep waking at 4 or 5 in the morning and listening in to their conversations.  And I confess I have sneaked back to the manuscript several times and changed the odd thing or two. So I’ve decided to give myself a new deadline and a new task to try to break the cycle: get all my folders (containing information for other novels) up to date by the end of this week. And that’s where today’s topic came crashing in. A disturbing story from the week’s papers.

The first headline jumped out at me: Belgian twin brothers choose euthanasia rather than blindness. Assisted death’s one of my pet subjects, as you know. The second headline ran: Euthanasia twins ‘had nothing to live for’. Marc and Eddy Verbessem were 45 years old, both cobblers in Antwerp, who’d lived together all their lives. They were both born deaf, and developed their own form of communication. They also suffered from a whole range of other genetic medical problems.

Now, just in case you hadn’t realised, Belgium is one of those countries where euthanasia is allowed if those requesting it are able to make a sustained and competent case for it, and if a doctor judges that they’re in unbearable pain. That’s been the case since 2002. But … neither of the twins was terminally ill; neither was in extreme pain. They’d sought death because they’d now found out they would soon go blind. They couldn’t bear the thought of being unable to see each other again, and losing their independence. Think about it for a minute. Is that adequate justification for killing two middle aged men, d’you think? Would you do it?

The Swiss position, which we hear much more about, is different. There the patient must be able to take the lethal dose themselves – assisted suicide. Would you find this alternative more acceptable?

The Verbessem brothers’ local hospital turned down their application for euthanasia. Indeed it took them almost two years to find any institution that would administer the lethal injection. Two years! Imagine what that was like. The doctor who eventually agreed considered that there was ‘unbearable psychological suffering’, (a subjective assessment to some extent at least) and the deed was finally carried out on 14 December.

I read on. And found a chilling additional note in the article: ‘Just days after the twins were killed by doctors, Belgium’s ruling Socialists tabled a legal amendment that will allow the euthanasia of children and Alzheimer’s sufferers’ … ‘to take better account of dramatic situations and extremely harrowing cases.’

What would you say to that?

Not every one agrees even in Belgium. Last December the European Institute of Bioethics based in Belgium published a report that expressed concern about the absence of effective controls. It notes that over a period of 10 years and 5,500 cases of euthanasia, not one had been referred to the police for investigation. They fear the interpretation of what is allowed is spiralling out of control. What would you say?

We so often skim articles and books picking up the main thread but not pausing to consider the reality or consequences of what we’ve been told, and I was in danger of doing exactly that with this story. But the more I read the more I was challenged. So the thought for the day on my perpetual calendar was particularly apposite: Readers are plentiful; thinkers are rare. (It’s from Harriet Martineau – a Victorian writer and social theorist of some repute, in case you haven’t heard of her.)

This snippet certainly made me think.

(Apologies if you have more accurate knowledge from the inside; I could only go by what was reported in several papers and on the net. Don’t hesitate to correct me if you know better.)

 

 

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Locked in to a fate worse than death

Tony Nicklinson is 58. He’s paralysed from the neck down, can’t speak, and his only means of communication is by moving his eyes on a screen linked to a special computer. And yet his brain is so alive and intelligent that he can hold his own in arguments with twitters and QCs alike.

Prior to the stroke, Mr Nicklinson was a handsome, successful, fun-loving man, keen on extreme sports. He was in Greece on a business trip, when he suffered a catastrophic stroke in 2005. Now he is in a locked-in state, dependent on carers for his every need, with no hope of recovery. He considers his life as ‘miserable, demeaning and undignified‘. He ‘has no privacy or dignity left‘, and he rates it a state worse than death. He’s held that view since 2007; it’s no passing whim. It’s what’s described as a ‘voluntary, clear, settled and informed wish’ in legal parlance. Watching him on The Channel 4 documentary, Let Our Dad Die, surely no one could help but sympathise with his viewpoint. Even the Greek doctor who saved his life is appalled by the consequences of his actions, although no blame attaches to him.

In March Mr Nicklinson won the right to have his case heard by the High Court. The hearing took place last week (starting 19 June). There was considerable media interest in the run up to it. Lord Falconer visited the family at home. BBC’s Fergus Walsh went to see for himself what kind of a life a locked-in patient has. Channel 4 aired its documentary. Though he could communicate with these people in his own home, Mr Nicklinson was unable to attend the hearing in person, so he stated his arguments through emails and lawyers.

His case? Simply put, he is incapable of taking his own life, so he wants the judges to rule that, when he decides he wants to die, a doctor will be immune from prosecution if he/she helps him. Mr Nicklinson fully realises that the law as it stands prohibits anyone else taking his life; that would be murder. His defence rests on the view that he is being discriminated against, because of his disability. He is looking for assistance to do what he would do for himself were he able. Furthermore he adds poignantly, why should other people be allowed to condemn him to a life of increasing misery?

His barrister described it in more ponderous legal terms: ‘a serious interference of his common law and Convention rights of autonomy and dignity’.

It’s important to note that Mr Nicklinson is not seeking a change in the law. He is seeking two declarations from the court.

1. That in the circumstances of his case – and where an order has been sought from the court in advance – ‘the common law defence of necessity would be available to a doctor who, acting out of his professional and human duty, assisted him to die‘.

2. That the current law of assisted suicide and euthanasia is incompatible with his Article 8 rights of autonomy and dignity .

The QC acting for this family argues that a prior sanction by a court ‘would provide the strongest possible safeguard against abuse’. And furthermore ‘it would also provide a safeguard against the concern, often expressed by disabled opponents of legalisation, that a change in the law would lead to a change in people’s attitudes to disabled people, who they predict would come under subtle pressure to seek an assisted death through fear of being a “burden”.’

But any loosening of the limits frightens the legal fraternity. Speaking directly to Mr Nicklinson, Lord Falconer made it perfectly clear that in his judgement, modifying the law to accommodate such an act would be ‘crossing the Rubicon’. He was himself sympathetic to assisted suicide in cases of terrible disability with no prospect of improvement, where the patient expressed a sustained wish to put an end to their misery, but ending someone else’s life is murder and that must always be unacceptable.

Pause here for a moment and ask yourself: What answer would I give to Tony Nicklinson?

Watching the documentary I wanted to weep with this man. His chagrin, his pain, were palpable. But there again, as Christina Petterson put it in The Independent,

‘… the law isn’t about how we feel. The law isn’t about how you feel if you were once healthy and fit and happy, and now aren’t. The law, as Lord Falconer said on that Dispatches, is the same for everybody. “If people want to kill themselves,” he said, it’s an “entirely private matter”, but “they can’t kill somebody else”. The law, as the disability rights campaigner Kevin Fitzpatrick also said on the programme, is meant to offer protection. “When you develop a society where some people judge that other people’s lives are not worth living,” he said, “that’s the Rubicon.”‘

There can be no happy ending for the Nicklinsons, neither Tony, nor his wife, nor his daughters. But each time a tragic case like this comes to court, and I watch the family being forced to parade their lives in front of others, to expend dwindling energy on fighting their cause, I feel there has to be an alternative.

I can, of course, see the dangers inherent in a change to the law against taking life. The consequences could be inconceivably horrible. I accept too that these extreme cases make bad laws. But the fact remains, that these exceptional circumstances do present from time to time. And they seem to cry out for special judgements.

Would it be so terrible to openly acknowledge this fact, and to relieve these families of the necessity of taking their cases to the courts? Why not constitute a sort of Ombudscommittee – a gathering of carefully selected, experienced and wise folk, representing law, medicine, religion, ethics, patients – who could quietly, rationally, compassionately, debate the very few cases which fall into this terrible legal limbo, taking guidance from others as and when they need it? Not in such a way as to drive the debate underground, not to sweep the anomalies under the carpet, but to take individual cases away from the heat and distortion of media coverage, protecting and supporting those for whom this dilemma is a lived reality not a theoretical argument.

I haven’t ever seen this idea promoted, and it’s the first time I’ve aired my own view on this. So what do you think? Would you be in favour? Or can you see some glaring reason why this would not be an acceptable way forward?

What would your solution be?

 

 

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One click ethics

Thanks to my daughter’s vigilance, I’ve just found an amazing website, tailor made for people like me who don’t get round to noting programmes about ethical issues until it’s too late, or who forget the ones they’ve seen. If you share my obsession about ethics you’ll probably know about it already. But just in case I’m not the very last ostrich out of the sand, I’m going to share this discovery with you. And no, the BBC aren’t paying me a penny!

It’s http://www.bbc.co.uk/ethics/ and it gives information about religion and ethics programmes broadcast by the BBC on TV and radio – past, present and future, so pretty comprehensive. And of course, giving appropriate links. Loads of cross referencing and fascinating diversions. The usual suspects are there – abortion, euthanasia, assisted conception, sexual exploitation … arguments for and against, recent controversial cases, documentaries, drama, comment. It’s great to have one site that gives easy access to the more obscure references as well as prime-time coverage.

I’m off on my travels again this week, so it’s good to know in advance what’s coming up and to know exactly where I can go with one click to catch up the following week if trains don’t run to time, or the hotel stages a fire alarm at the wrong moment, or I get so lost in my latest Robert Goddard novel that I lose all track of the hour.

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