Hazel McHaffie

Assisted Dying Bill

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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Pause for reflection

There’s nothing quite like a spot of immobility to challenge one’s priorities. So much of who we are is wrapped up in what we do. If we can’t do, what then?

A rather nasty early morning fall on black ice (who ever suggested pre-breakfast power walking was good for people of my age in winter time?!) and the equivalent of whiplash injury in my lower spine, have curtailed my movements rather too effectively. Please don’t misunderstand me – this is no cry for sympathy; I’ve no one but myself to blame. No one forced me. But the effect is that I’ve been doing rather too much thinking for my own mental well being. (Well, truth be told, I was always pretty borderline.)

Regardless of the accident, March was always going to be a weird time, a kind of cold turkey, waiting for the latest novel to come off the production line. No more tweaking. No more proof reading. What is, is. And most ‘next-jobs’ can’t begin until the book is actually available – next week!

It’s surprisingly hard to concentrate when you’re in constant pain – or maybe I’m just a terrible wimp. And everything feels cack-handed. Imagine said author draped over an ironing board to write, read, eat, and you have a glimmering of the scenario chez moi. Just not being able to sit down becomes remarkably wearisome. Life gets reduced to essentials.

Unfortunately ‘essentials’ includes a lot of travel right now – Ireland, Cornwall, Midlands, London, all within the space of three weeks. ‘Keep getting out of the vehicle and walking around‘, advises my expert osteopath. ‘Try reclining the seat and lying on your side.‘ Hmm. I guess it depends on the vehicle, and who’s driving, and how soon you want to get there.

Right to DieSo, reflections it is then.

The trip to Galway in Ireland was for an event about dying – both natural and assisted. I was invited on the strength of my novel, Right to Die, and my background in ethics. Eire is working on a parliamentary bill on this subject right now so it’s a hot topic over there; it was an honour to be included. And I felt heartened. After eight years in print my little book is still borrowed from libraries large and small, and the topic is still relevant and controversial,. All very encouraging.

Question is, encouraging enough to keep doing what I do? Hmm. Let’s see.

Things about my work I love and want to retain in my life:
Reading
Writing
Blogging
Editing and revising
Talking about my books/pet subjects
Entering into the debate
Exploring new topics
Good reviews
Hearing from satisfied readers

Things I’m less keen on:
Promotion
Marketing
Tax returns!

Inside of Me coverAhh. The tally says it all. I might revisit this once Inside of Me is on the shelves and my back restored. Who knows, I might even  reinvent myself and go for those four inch crimson stilettos!

 

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Assisted life or assisted death, that is the question

Dr Ann McPherson was a committed and energetic GP who made a mark in many spheres of her life. But she felt burdened by her powerlessness to help those of her patients who were terminally ill and suffering beyond their endurance. As a consequence she became an ardent campaigner for a change in the law. When she herself developed pancreatic cancer she knew all too well what lay ahead, but in spite of her own troubles she continued her crusade for as long as her strength allowed. When the disease overwhelmed her, she was forced to endure a horrible death – exactly the kind of end she wanted to spare others from.

Her daughter has courageously shared her story in the BMJ this month, and I found it a most eloquent and persuasive one. She spares few details is recounting the horror. This was indeed the kind of distressing death we would all dread.

Photo courtesy of Photolia

Photo courtesy of Photolia

In the same journal at the beginning of July, an editorial called for doctors to stop opposing assisted dying, and rather adopt a position of ‘studied neutrality’ – not apathy, please note, but neutrality – to accommodate the many different points of view doctors hold. The papers include emotional appeals to society to embrace the old and the disabled instead of thinking of killing them; to value choice as an inherent right; to start properly talking about death …

Ultimately however, this is a matter for parliament not doctors, powerful though they may be, to decide. And indeed Lord Falconer’s Bill designed to open the way to a form of assisted suicide in Britain, had it’s first full parliamentary airing last Friday. The House of Lords was packed; over a hundred members queued up to speak; eloquent appeals were heard without interruption. News items, articles, columns, letters – you’d have to be an ostrich to have missed the subject over the last week or two.

So it’s probably not surprising that lots of people have asked me what I think about the subject. In my novels I work hard to give equal weight to all lines of reasoning and not to betray my own opinion. Right to DieNow, six years after the publication of Right to Die (my own book on this subject), it seems expedient to declare my hand. But first I should say that in spite of my close involvement in this area, I can still be persuaded by the strong arguments on both sides. Emotional firsthand stories still grab me by the throat. I am very far from black and white, I still swither. Indeed, as soon as I’ve posted this, I’m sure I shall read or hear something that will make me wonder all over again. I’d welcome any genuine comment which would point up errors in my thinking. Or indeed any other thoughts on this issue which would contribute to healthy, measured debate.

So, where do I stand? First I should state the problem as I see it: intractable pain and suffering, indignity and distress as features of dying or living with degenerative or totally incapacitating diseases. OK, I know the current Bill is addressing only terminal illness (within 6 months of death – a diagnosis that’s impossible to make with certainty, incidentally), but I want to gather in those who have longer-lasting problems too, who in my opinion, often have a stronger case for seeking a way out of their terrible situation. (I’m not operating under the same constraints as Lord Falconer and his cronies.)

I should hasten to reassure you at this point that I have no intention of rehearsing the arguments or regurgitating the emotive phrases wheeled out by both sides in relation to this current Bill; you’ll be as familiar with them (perhaps even wearied of them?) as I. Rather I want to propose a two stage process.

In the first instance, my appeal to parliamentarians would not be to change the law, but to re-allocate resources. What I’m going to say now may sound utopian, but it’s my view that everyone – absolutely everyone – suffering from a terminal or degenerative illness, should have full access to excellent palliative care of the highest order including, where appropriate, proper psychiatric involvement to eliminate treatable problems like depression or anxiety. At the moment this is very far from the case (even though Britain is recognised as a world leader in this field of medicine). Ask yourself: What kind of a society knowingly condemns some of its most vulnerable citizens to a form of torture, when an alternative is available? It seems to me iniquitous that even established successful hospices are reliant on public financial support to keep going. And that only a tiny fraction of patients who desperately need their services get them.

I would maintain that simply being comfortable and being listened to can change one’s whole perspective on life, no matter how short or long that life might be. So, if pain and distress are capable of amelioration, they should be treated swiftly and effectively. What a different scenario we would have from the outset if that were everyone’s right.

Once this first provision is made, there would be a much smaller number of people for whom life is a prospect worse than death: those for whom palliative care does not offer a solution. And I know only too well that not all pain, not all distressing symptoms, can be relieved: it’s naive to think they can. I would keep these remaining cases well away from media scrutiny (with its attendant risks of vitriol and vilification for those at the heart of these situations). Instead I would propose a system whereby cases could be brought to a kind of Ombuds-committee made up of representatives from the main relevant disciplines who could, with compassion, empathy and experience, in private, help all concerned come to a conclusion which would be the optimal one in these circumstances. And to do so with all speed.

The necessity to go through this process would, it seems to me, go some way towards protecting the vulnerable from vultures and undue pressure to act against their own best interests (one of the biggest worries with the Falconer Bill). And to facilitate this it would be hugely advantageous if Advanced Directives were to become the norm: people spelling out their beliefs and wishes clearly and rationally while they are in complete control mentally.

There would still, of course, need to be careful scrutiny of the legal limits and responsibilities. Doctors should not be required to take risks or actions which are against their consciences or without legal backing. Patients should not be obliged to spend their last days, weeks, months or years battling officialdom. Relatives should not be fearful of dire consequences. Adequate legal provision would have to be made. But in my view it is almost impossible for the blunderbuss that is the law to properly take account of the fine nuances involved in these cases on its own, and to create a catch-all law. Furthermore, at the moment I do not think the Falconer Bill is accurately addressing the real dilemma.

All the Bills drafted to date, all the tragic cases paraded for public scrutiny, all the  discussions linked with them, have forced society to address the issues, to look squarely at the problem. And indeed, surveys show that we as a nation are much more sympathetic to the realities faced by these families than we were a decade ago. Now though, we need a mature and measured response that fully takes account of the things we all dread, and moves us to change our ways. To recognise the importance of good palliative care – not only to value it but to put our money where our mouths are. To respond sympathetically to the urgent needs of those people for whom life even with optimal care is intolerable. For those with fierce intractable scruples to ask: what right have I to impose appalling suffering on others who do not share my personal view or scruples?

Shutterstock image

Shutterstock image

Hmmm. I’m feeling rather vulnerable myself stating my views so forthrightly.

What do YOU think?

 

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