Belgium
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.
Experience and empathy
They say no experience is wasted on a writer, and there’s certainly an element of truth in this. But as a writer, it’s important to recognise that reaction to events and happenings varies hugely, a universal response should not be assumed (goodness, I sound positively Jane Austen-y!!).
I’ve been very conscious of that reality this year. Let me explain.
In June I was told I had cancer. Hmmm.
I needed immediate treatment. OK.
The tumour was removed within twenty-four hours of diagnosis. Wow! Impressive or what?
The Director in charge of the whole department rang himself to give me the results and talk me through the proposed action and answer my questions. Hello?! I’m even more impressed. What did I do to deserve this?
I was given a number to ring any time. Is this really the cash-strapped, people-poor NHS?
A wonderfully warm, secure and seamless blanket of care, kindness and support, was thrown around me by a dedicated and highly skilled multidisciplinary team of professionals. There are no words to do justice to the fantastic, way-beyond-the-call-of-duty service I received.
A couple of times I did protest mildly that my circumstances didn’t warrant such a massive response; I was fine with this. My protestations were politely but firmly quashed. I was assured my circumstances – and I – did justify all this expertise and compassion. Why? Because apparently the majority of people are shocked and traumatised by this particular diagnosis. They need kid-glove treatment. So the team routinely start from that base line.
Why then am I different? It’s not an act. It’s not bravery. Not even a consequence of my faith. Nor does it stem from naivety. Two of my brothers have had cancer and been through much worse times than me; bearing the scars and after-effects still today years later. Two of my sisters-in-law sadly could not be saved and I watched their terminal decline with enormous sadness. Over the years many dear friends with cancer have suffered, died, some shockingly young, leaving children behind. And in my professional life as a health care professional I’ve seen up close and personal, enormous grief, loss and pain attached to experience of this disease.
OK, I may be calm about this diagnosis for myself, but I’m pretty sure that I’d have been far more traumatised if it had related to my children or grandchildren – young, with their lives ahead of them. I’ve had a brilliant innings, beyond the biblical allotted span. Even if this thing has already done its insidious evil work and will eventually beat me, I can’t complain. So I’ve been somewhat bemused by all the messages of concern and comfort and reassurance sent to me during and since my two surgeries. However, they tell me a lot about the fear this illness engenders even today when medical advances have changed the prognoses in many types of malignancy dramatically. Now that I’m back on my feet readjusting to life, I get exclamations – almost accusations! – of doubt as to the genuineness of my energy and normality. Some well-meaning people want to force me backwards into a ‘fragile invalid’ box. Clearly I don’t conform to their conceptions of a cancer patient.
Linda Gillard, who is herself an author, and who’s been a terrific support to me in that context, has made me think again, though. She had treatment for breast cancer five years ago which has left her with chronic pain and disability. It has radically affected her writing career as well as her quality of life. Indeed her whole experience has been in a different league from mine. Sharing her thoughts on social media recently, she described her reality.
I went from diagnosis to mastectomy in less than 3 weeks. 5 years on, I still haven’t made my peace with what happened, I still feel traumatised, I still don’t have my life back because cancer left me disabled with chronic pain which apparently will never go away.
This post isn’t meant to be a self-pitying whinge, it’s a plea for greater understanding of PTSD. For some people who survive cancer, that survival comes at a terrible cost and the nightmare – mainly fear of recurrence – persists long after eyelashes and pubic hair have grown back. In my case the fear was/is not of death, but of further chemotherapy (and for those who sailed through chemotherapy, well, I’m very happy for you, but you probably didn’t have breast cancer chemo, which I’m reliably informed is The Worst.)
But it was the best of times, the worst of times… I’ve never known such compassion, from my inspiring surgeon (“If you’re going to get breast cancer, this is the kind to have”), to my oncologist who seemed as dismayed as I was that my neuropathic pain wouldn’t go away, to the magnificent nurses in the Macmillan suite who – almost apologeticaly – pumped cherry-coloured poison into my veins and checked on me every few minutes to see how I was coping. (Thank you, Norma! You will have forgotten me, but I will never forget you or your professional kindness.)
Her eloquent and courageous confidences have given others permission to share their abiding worries and traumas. Which all helps me to recognise that I am the one who is most out of sync here. And it’s reinforced the importance of reading, reading, reading; listening, listening, listening some more, in order to gain real empathy with those who are challenged by the issues I explore in my books.
I was reminded in some small way of Sabine Dardenne, a twelve year old Belgian girl who was kidnapped by a psychopath and subjected to the most appalling and degrading abuse. When she was discovered after eighty days incarcerated in a filthy ‘hell hole’, everyone expected her to be severely traumatised and in need of sensitive psychiatric help. Instead all she wanted was to get back to normality.
The general view was that I was ill. I was probably in shock, but I wasn’t ill. When talking about me, people would say, ‘She’s got her feet on the ground,’ and that’s probably true. You can’t rewrite history, and I know I can never wipe out what happened, but the best medicine is just to get on with your life and sort it out yourself. At the time, no one understood that …
In fact, my parents and my sisters were the ones who needed a psychiatrist, not me: all of them ended up having years of therapy, so they were the last people I could confide in.
Sabine is one truly remarkable girl whose story (told with help from translators in I Choose to Live) makes humbling and impressive reading. I am certainly not in her league but I do understand where she’s coming from.
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.
You’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?
Critical input
So, we’re into the last few days of the Festival here in Edinburgh. Next week, after a grand finale firework spectacular on the evening of the 31st, this seething, happening, nothing-surprises place will metamorphose back into our quiet and dignified capital.
Since I wrote my last post I’ve been to an opera, several more dramas, and a couple of book events – including one where Marion Coutts was speaking (I reviewed her book, The Iceberg, about the death of art critic Tom Lubbock a couple of posts ago) alongside award winning Belgian, Erwin Mortier, whose book, Stammered Songbook, recounts his mother’s descent into dementia. My workaday kind of topics. However, I must admit the most valuable thing I brought away from this session was what not to do on the platform!
But hey, what of my own writing, you may well be thinking? Well, good news! It took another giant stride forward this week.
As you know, I’ve had really helpful feedback from experts on limited sections of the novel, but that only takes me so far; I also need critique from people looking at the whole story and from a general readers’ perspective. So six very insightful and well-read ladies belonging to a bookclub already known to me, have been reading the first full draft of Inside of Me, and on Tuesday I went along to hear their verdict. They were tremendously positive and encouraging but I picked up some very useful pointers for improvements.
Now my task is to think through the wealth of suggestions from all quarters and decide what to revise, what to delete, what to leave alone. And I’m confident the end result will be a better, stronger book than that first draft.
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.
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.)