Hazel McHaffie

Right to Die

Cursed inheritance

As I promised last week, good news this time!

Eight or nine years ago I chose Motor Neurone Disease for the degenerative condition journalist Adam O’Neill is battling with in my novel, Right to Die; Right to Diea disease that will strike right at the heart of his being and his aspirations. So I was fascinated to find Lisa Genova chose Huntington’s Disease for her tough Boston cop Joe O’Brien in Inside the O’Briens, a disease that stops his career dead in its tracks and forces him to face the horrors of genetic inheritance.

Both MND and HD are frightening, crippling, fatal conditions that rob the person of control and dignity. Getting inside the mind and body of either an Adam or a Joe is very scary stuff. So, having been there myself, I was extra curious to see how someone else tackled the ethical minefields and personal challenges associated with such a scenario; especially someone with Genova’s credentials.

This time she has inserted occasional tracts of medical explanation about the condition into her novel to inform the reader, positioning herself as a scientist; but for me her real strength lies in her ability to describe the illness from the inside. She puts the humanity into the science, compassion into the clinical facts. The insidious onset before policeman Joe even suspects the truth. The sudden weird and inexplicable bursts of anger. An inability to process instructions. Finding it impossible to keep legs and feet still on parade … in police exercises … in a restaurant. And then, once he’s diagnosed, the inexorable progression. The involuntary indiscriminate throws – punches, food, cutting words – that label him as drunk, deranged or dangerous to passers by. The red rages that cause his wife Rosie’s black eyes, terrible destruction in the walls of the family home. The fear that won’t let him ever hold his grandson. The depression that makes him constantly check his gun is still loaded and primed.

We peer into his past when Joe recalls his mother’s antsy wild black eyes as she lay in a mental institution for years; condemned to be known as an incurable drunk. The questions hitting him now nearly forty years later. How could she have remained an alcoholic in the hospital all those years? Why had his father stopped taking Joe and his sister to visit her? Why had his strong dad wept like a baby? What lessons did she actually teach him?

The author powerfully captures the brutal reality through the eyes of the rest of the family too:

Inside the O'Briens‘Huntington’s isn’t the absence of moving, thinking, and feeling. This disease is not a transcendental state of bliss. It’s a complete freak show – ugly, constant, unproductive movements, uncontrollable rage, unpredictable paranoia, obsessive thinking.’

We see the dawning terror in his wife’s eyes. Her silences. Her withdrawals. Her desperate stroking of the crucifix round her neck, the beads of her rosary. Her binning of the symbols of her ingrained Catholic faith.

Then there’s the terrible implications for their four beloved offspring. Vegan yoga teacher, Katie, living life in ‘peace, health and harmony’. Ballerina Meghan, limbs and body and mind all supple, beautiful, desirable. Firefighter JJ, taking his health and fitness for granted, using it to save others; preparing for imminent parenthood with his wife Colleen. Rebel Patrick, sewing his wild oats liberally, experimenting with life. Each one of them carrying a fifty percent chance of harbouring this cursed disease. Nothing can change that fact. Nothing can halt, slow or reverse this terrible thing. Joe, their father, is powerless to protect them. Indeed it was he, their supposed protector, who handed on the poisoned chalice in the first place. And now he must stand on the sidelines and watch them all battling with the impact of their cruel inheritance. Only they individually can decide whether to take the test, if they want to know the truth lurking unseen in their own DNA. JJ and Colleen may not even choose on behalf of their baby son.

How should Joe deal with his burdens? Is there a way out? Should he take it? How can he best support his children? Should the youngsters go for testing? What are the implications if they do/don’t? Would I want to know?

I love books that are at once a gripping read and challenge me to think deeply – especially in the field of medical ethics. And even though I’ve been into these questions already myself as an author, I thought this book was brilliant and awarded it five stars. Beautifully written, compassionate, perceptive, engrossing, provocative. Genova at the top of her game again. Seems I prefer her as neuroscientist-turned-novelist rather than simply novelist. That could well be something to do with my own position on the spectrum; nevertheless the experience of reading Love Anthony and Inside the O’Briens one after the other, has taught me something of value for my writing too.

So, Genova has already tackled Alzheimer’s, Left Neglect, autism and Huntington’s. What next? MND, she says – or as she calls it ALS. Ahah! I await that novel with bated breath!

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Arts, crafts and literature

August. Hard to believe but it’s Festival time in Edinburgh yet again.  Other commitments and limited time are forcing me to divide my allegiance roughly into three divisions: this week – arts and crafts; next week – drama; the following week – literature.

Wooden penSo this week I’ve visited exhibitions and craft fairs, and as ever been hugely impressed by the skilled hands and eyes which create fabulous works of art of so many types.  I couldn’t resist this beautifully turned wooden pen which is destined to become my signing-books tool from hereon in.

It seemed fitting then, in snatched odd moments, to read The Iceberg: a true-life memoir of an artistic family by Marion Coutts which I bought soon after it came out last year … an author for whom ‘August from its first to its last day has been like this, a designated disaster zone, dates crossed out on the calendar like grazes or scars and dotted with emergency notes scribbled in pen.

At the heart of the book, its context, its object and its subject, is art critic and bibliophile, Tom Lubbock. Buying books is his habit; reading them is his work and life. His house is stacked high with them. He can go with practised ease to any title, any quote. His living depends on speaking and writing. How cruel then that he should develop a grade four tumour in the area of the brain controlling speech and language, which will gradually but inexorably rob him of the ability to communicate verbally.

The IcebergVisual artist wife, Marion Coutts, on the other hand, finds she is unable to read since learning that her husband is terminally ill. Words have become irrelevant except insofar as Tom needs them. If he is searching she will find and feed the words back to him until they reach a perfect understanding. In time she becomes Tom’s mouth, although without his brain she feels something of a fraud.

Son, Ev, is a toddler, absorbing language and coordination; learning to understand the world at breathtaking speed. The accelerating forces in his life are a counterweight to the deterioration in his father’s condition. ‘Both are engaged in a work of beyond-the-brink resourcefulness, an improvisatory balancing act, an enforced making up as they go along.’

The family as a unit are also feeling their way in uncharted territory. ‘Tom’s is a high-speed disease with full, motorway pile-up repercussions. It does not pause to allow you to admire the view from anywhere, How many times do I think, Now we really are in trouble?’ And each time the family look back at all the preceding occasions when they’ve said exactly that and realise they seem manageable and benign in retrospect compared with the present calamity.

Marion charts Tom’s decline and her reactions and Ev’s development with an unvarnished and unflinching honesty. Short staccato sentences somehow capture the moments of panic, the heart-stopping dread, the breathless anticipation of what’s coming. Descriptions devoid of self-pity make the enormity all the more raw.

‘In the giant city State of the hospital, new doctors take up their posts in early August and the convulsion of their arrival continues until the end of the month when gone-away staff return from the beaches and rocks of France and Croatia to face the great wave of September’s fresh sick and maimed. Emails go unanswered, messages do not get passed on, dates for procedures come and go, Post-it notes go missing and questions float wistfully in the air. Meanwhile we, outside the institution, outside of everything, are well under way on our own steam. We howl along, all three of us together, with knocks and shocks and sudden up-speedings round curves skewed tight enough to spill us right out, and our bones and skin are broken and torn but there is always more bones and skin to be mangled. Like a miraculous Catholic bloody endurance sport, there is always more. In the space of three weeks, between us we have had hospital stays, fits, diarrhoea, speech loss, tonsillitis, swollen feet, mobility loss, demoralisation, ambulances, glue ear and holidays – everything happens always and forever, on holiday. But we are not tourists. We travel tightly baggaged with our lives. There is nothing left at home.’

Her very writing style, confident and semi-detached and analytical, sets her apart as in control; but the half-buried casual confessions reveal her vulnerability. As she finds: ‘The weak are held close and given tea. They are hugged and warmed by the fire. The strong are revered but kept at a distance.’

Published last year, The Iceberg has been shortlisted for three major literary prizes and longlisted for another one. Wow! Tom, familiar with the literary world, would have been proud of his wife’s achievement. I, for my part, found some aspects of the book irritating, some bewildering, but in many other ways it echoed my own account of a slow death in Right to Die; a kind of real-life authentication of my fiction.

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I’ll see myself out

In 1936 the royal physician, Lord Dawson of Penn injected a lethal mixture of morphine and cocaine directly into the jugular vein of His Majesty King George V. Queen Mary and the about-to-be King Edward VIII were in attendance. The timing of the fatal infusion was chosen so that the announcement of the King’s demise would make the next morning’s Times but be just too late for the less prestigious evening press.

Four monarchs on, the debate as to the rights and wrongs of assisted dying is a hot topic, and legally what Lord Dawson did would be inadmissible today.

I’ve lost track of the number of books and articles I’ve read on the subject, how many debates and seminars I’ve listened to, how many times I’ve rehearsed the arguments myself. But I can say that a new book out this year, beguilingly titled, I’ll See Myself Out, Thank You, is a very useful addition to the existing collection – hence I return to the subject yet again in this blog!

I'll See Myself Out, Thank You

It brings together short but relevant contributions from a range of writers: seriously disabled and terminally ill people who plan to take their own lives when the time is right for them, spouses of people who have already done so, psychiatrists who’re asked to assess their mental competence, people who work for Dignitas in Switzerland, those who have accompanied patients to Dignitas, relatives of people who’ve actually helped someone to die illegally in this country, peers of the realm who’ve voted on the issue, men of the cloth, humanists, ethicists, philosophers, journalists, novelists, playwrights, even a stand-up comic – an impressive list. All with voices worth listening to.

It’s a very readable book. The vivid stories, the personal experiences, the credentials of the authors, bring the issues to life and breathe authenticity into their measured and thoughtful viewpoints. Most of the arguments I’ve heard many times before, many of the contributors I know personally. However, I personally found three sections particularly thought-provoking.

In Chapter 4, psychiatrist, Dr Colin Brewer, gives some fascinating vignettes of people whom he was asked to assess for assisted suicide.  Made me ask: what would I have made of each of these cases?

The first section in Chapter 6 on Religion and Philosophy by Emeritus Professor of Theology, Rev. Dr Paul Badham (whom I’ve never met), gives a wholesome and refreshing look at ‘The Christian Case‘. All too often we hear a polarised and unbalanced religious perspective from a minority group or an unrepresentative figurehead; it’s good to have a more tolerant and compassionate approach which fits with a God I’d want to trust and believe in.

Right to DieAnd then there’s the section in Chapter 9 by a documentary maker, telling the story of art lecturer Glenn Scott‘s* suicide when he was in the last stages of Motor Neurone Disease. It’s a most moving account, reminiscent of my own story of Adam O’Neil’s dying in Right to Die. (*The link with Glenn’s name takes you to the video of his last tape.) I actually spent a whole rather miserable day looking at similar videos on YouTube and was amazed at the number out there.

Now, eight decades on since the death of King George V, when society is becoming overloaded with ailing elderly folk, when more and more people are wanting to ‘add life to their years – not years to their life‘, when parliament is still failing to resolve the legal paradoxes and quagmires, when doctors are hamstrung by ‘pervasive, post-Shipman paranoia’, when patients and relatives face increasingly intolerable situations, it behoves us all to think carefully, rationally, about where we personally stand on this issue, and what kind of a society we want for our children and grandchildren. In my opinion, this book helps one to do exactly that. (As do those videos.)

It didn’t change my mind; it did strengthen my resolve.

 

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Reflections from the sofa

It’s all very well to theorise about how we would act in certain circumstances from a safe distance, but real life in all its chaos can feel very different from the calm scenarios of our speculations. And in that context I’ve experienced some very sobering realisations this past few weeks in relation to medical ethics. Don’t get me wrong, I’m not feeling maudlin or morbid; rather I have an unusual amount of quiet time on my hands to reflect at the moment. So I thought I’d share some of my reflections with you to illustrate my initial statement.

There’s a lot to be said for simply accepting whatever life throws at you and dealing with it as it happens. It also saves a lot of angst if you just go along with whatever doctors say, take whatever treatment they advise, leave all the thinking to other people. But I’ve spent decades pondering ethical questions and challenging received wisdom, and my brain is now hard-wired to do so. So, let me illustrate where I’ve been going with this.

QuestioningMy own mortality has been brought into sharp relief since my heart started doing crazy things and I’ve been in and out of hospitals and GP surgeries. Lying on the floor waiting for the next heartbeat, watching a monitor recording 200 beats a minute, feeling the world receding, concentrates the mind wonderfully.

I’ve been working in the field of medical ethics for decades so not surprisingly I’ve given due attention to my end-of-life wishes. My ideal? To die with dignity, free from suffering, in full possession of my mental faculties. Nothing unique there, then. If things go pear-shaped, I’d rather not prolong a life of disability, lack of cognitive function, or suffering. Fair enough. Given that I’m entirely reliant on medicine to stay alive, I even have the wherewithal at my disposal to effect my own death should I wish to, without breaking any laws or implicating anyone else, or indeed doing anything other than refusing treatment.

I’ve duly prepared myself and others: I’ve thought (ad nauseam) about my own tolerances and limits. I’ve written an advanced directive – and even acquired a medical signature for it. I’ve had the conversation (many) with my nearest and dearest. All textbook stuff so far.

But real life is full of fine lines and unknowns which make actually carrying out those clear wishes problematic. I won’t bore you with a comprehensive treatise on how far short of the textbook reality falls in my own case; merely give a couple of examples by way of illustration.

I have options. I could simply ignore all my current symptoms of dizziness, nausea, blackouts, arrhythmia, get into the car and drive. I could keep doing strenuous things until my heart just gives up. Either, in my judgement, would be totally irresponsible. And my family and friends and doctors and lawyers would certainly have plenty to say – legitimately – about such a reaction. No, I have little choice at this moment but to listen to my body and accept that all is not well, and I believe I have a moral duty to take certain actions in recognition of that.

My heart is not maintaining a steady rhythm. One of the consequences of this is that I’m currently at greatly increased risk of a stroke. But nobody knows how bad such a stroke might/will be. If I suddenly had one, would I want to be resuscitated or treated? Well, it would depend on how severe the consequences of the stroke would be, and nobody could predict that at the time of the stroke. By the time anyone does know, the decision to treat has already been made … hmmmm. And it could be that by then I’m no longer mentally competent to make a decision for myself … ahhhh. How quickly and easily events spiral out of control.

At the moment we don’t know what’s causing the problems; I’m scheduled for more tests. Once we have a better idea of the underlying diagnosis, other questions will surface. They’re contingent on the facts: cause, statistics, outcomes, possible treatments, side-effects, risks-benefits ratios, etc etc. My medical team can supply the information, but I’m the one who must assess what I want. No one can force me to have treatment against my wishes. But my tolerances, my wishes, might not square with those of my medical advisers who have their own professional and personal standards and ethics, although it has to be noted, the consequences of what they do to me will not be borne by them. My assessments might not match those of my family who could be left to cope with my disability or death or worse. For their sakes I might feel an obligation to choose something different from what I might wish for myself alone.

See what I mean? We might think we have it all buttoned up, but life is unpredictable and no man is an island.

Right to DieI’ve seen up close and personal the effect of heart problems like mine – both instant death from a heart attack (my father), and the slow decline of repeated strokes, vascular dementia, prolonged total dependency (my mother) – so I’m not naive. I know what I would choose for myself; my family do too, but it’s not at all clear to me at the moment that I shall actually be able to put my wishes into effect. I rehearsed these dilemmas with Adam O’Neill when I walked alongside him as he died from Motor Neurone Disease six or seven years ago. I’m rehearsing them again now in real life for myself. It’s an interesting occupation.

 

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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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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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Going gently into that good night

Until this week I have to admit that I’ve never watched the soap, Coronation Street. But there was so much hype about Monday’s double bill featuring the suicide of a character called Hayley Cropper, that I felt compelled to see it. After all, exploring real moral questions through fiction is what I’m all about.

For those of you who don’t know, (as I understand it) Hayley (once Harold) is a transgender person who survived local prejudice, married cafe owner Roy, and developed pancreatic cancer. Monday was the day she had resolved to end her suffering by taking a self-administered (don’t even touch the glass, Roy) cocktail of drugs. Cocktail of drugsRoy is hoping against hope that when it comes to it she’ll change her mind and they’ll have longer together. ‘There’s still joy to be had.

I came to this my first episode without any emotional attachments to the Croppers, but the whole scene was handled so gently and sensitively that the millions of viewers for whom this represented a personal tragedy must have found it harrowing. It felt as if we were in that flat with them. The touching last conversations … Hayley’s struggle to iron Roy’s best shirt so he turns up respectably clad for her funeral … Roy’s decision not to have a ‘special’ on the cafe menu on this terrible day … the anxiety and concern of the neighbours … all provided heart-wrenching pathos to the last hours of this desperately sick woman. I haven’t been party to her struggles over the past few months but I have seen other real people die of this horrible illness, and in a way their suffering overlaid Hayley’s for me. Seeing her quiet smile as the music of Vaughn Williams’ The Lark Ascending stole through the room, listening to her settled resolution, watching her determined drinking of that fatal cocktail, the peaceful waiting – I was willing all the assorted well-wishers not to disturb their precious last hours together. This was a moment for absolute privacy and solemnity. And from where I sat, ITV got most of it right.

Whatever we think of the issue of assisted dying, or suicide, or the right to die, this programme provided a useful vehicle to promote discussion. Of the tragic situations for which there are no good options. Of the emotional and physical impact of terrible diseases. Of our responses, our prejudices, our beliefs. Of the current law.

And indeed, Lord Falconer, the former Lord Chancellor, is currently working towards launching another bid in real life to legalise assisted dying under certain clearly specified conditions which will reopen the hornets’ nest for sure. So, hats off to another screenwriter and to ITV for bravely raising the issue in such a way as to get ordinary people thinking about these vexed issues for themselves. If you cared about Hayley’s plight, if you were angry with her for doing what she did, if you threw things at the TV, if you wrote to ITV complaining about their depiction of a suicide … then spare a thought for those for whom such dramas are lived realities. What would your answer be?

A safe distance away I might share another such challenging film production – but that’s for another time. Today belongs to Coronation Street.

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The Universe versus Alex Woods

I’m happy to report that the new computer is flying along and overall I’m loving it. Still a few things to get the hang of, but happily writing my blog is not one of them. So here goes.

As you may (or may not) recall, I went to hear Gavin Extence speaking at the Book Festival in August. He wasn’t actually talking about his book, The Universe Versus Alex Woods, (he was presenting the case for assisted dying in a debate) but nevertheless, I bought a copy – of course I did; it’s his version of my Right to Die! And I’ve now finished reading it.Two novels about assisted dyingThe Universe Versus Alex Woods (perfect title, by the way) is very readable, touching and amusing, and I enjoyed it, but it wasn’t what I was expecting. Extence says himself he didn’t set out to deal with assisted dying; he wanted to write about this teenager who’s had a difficult life who goes on to perform an act of unconventional selfless heroism.

Which probably accounts for the structure. We know from the outset that Alex Woods is connected to Mr Peterson when he’s stopped at Dover customs with an urn of ashes and 113 grams of marijuana, but it takes Gavin Extence 100 pages to get around to the two meeting. And another 100 pages to present the kernel of the story. First we must get to know Alex Woods: details of his extraordinary accident (hit on the head by a 2.3 kilogram meteorite travelling at 200 miles an hour) and the consequences of his resultant epileptic fits, his puny person, his zany mother, bullying, difficult relationships, his own bizarre responses, his regular sparring with big moral questions and social niceties.

We know far less about Mr Peterson, a rather bad tempered but grieving widower, very attached to his dog and his books. He and Alex are thrown together when Alex has to do penance for a crime he didn’t commit, but they discover mutual interests and develop a strange but warmly wholesome relationship. Through Alex’s eyes Mr Peterson becomes a sparky character given to wise words and robust common sense.

So, although Alex is a teenager, below the age of accepted moral competence, he is the only person Mr Peterson confides in when he develops the intractable neurodegenerative disease, Progressive Supranuclear Palsy. It’s a heavy burden for Alex to carry.

PSP might well ring vague bells for you. Remember the real-life case a few years ago, plastered all over the papers, headline news on TV, of the doctor, Anne Turner, who left 100 letters saying, ‘By the time you read this I’ll be dead‘? She’d already nursed her husband through something similar, and she was determined not to linger with it herself. Her three grown up children accompanied her to Switzerland where she drank a lethal dose of medicine. Her decision and the reactions of her family and the authorities were all replayed on TV.

Anyway, Mr Peterson knows he’s destined to lose his ability to take action before too long and he’s mapped out a pathway for himself. Only things don’t go according to plan, and Alex becomes embroiled in his exit. The police characterise Alex as vulnerable – ‘intelligent but extremely naive, and possibly disturbed,’ brain damaged, fatherless, friendless, with a mother of ‘dubious credentials and capabilities‘. He’s easily manipulated, his ‘ethical abilities‘ have been ‘compromised‘. The media spin him into a violent sociopath with an inability to feel emotion, the product of a sinister religious cult, with a troubled record as a young teenager.

Mr Peterson’s unsound judgement is beyond doubt in the eyes of the press: he’s psychologically damaged by the conflict in Vietnam; he’s recently bereaved; he’s been sectioned and incarcerated in a psychiatric ward after attempting suicide; he’s been fraternising with a minor …  they weave all sorts of innuendos through this inexplicable relationship.

We, of course, know the reality. Both Alex and Mr Peterson are into moral decision-making in a big way, analysing things in private and together to tease out the right course of action. As the old man says: ‘Don’t ever surrender your right to make your own moral decisions, kid.

Mr Peterson sums up his predicament succinctly while he’s still in the psychiatric ward after attempting suicide: ‘I don’t want to die, kid. No one wants to die.  But you know where I’m heading a little down the line. My future’s already written. If I don’t want to face that, there’s only one way out.’ And later: ‘I have a life worth living at the moment and I might still have a life worth living six months from now. Even a year from now. I don’t know. But what I do know is that sooner or later the balance is going to tip. Sooner or later I’m gonna have a life I can no longer bear. And by that time, chances are there won’t be a damn thing I can do about it. I’ll be in some kind of hospice. I won’t be able to stand or speak, let alone take the necessary steps to end it all. That’s what’s unbearable.’

 And Alex understands that: ‘Knowing that there was a way out, and that his suffering was not going to become unendurable, was the one thing that allowed Mr Peterson to go on living, much longer than he would otherwise have wanted. It was the weeks leading up to our pact that were shrouded in darkness and despair; after its inception, life became a meaningful prospect once more.’

This is an ambitious debut novel. Extence has delved deep and wide  – into human relationships, epilepsy, meteorology, astronomy, tarot card reading, mathematics, theoretical physics, literature, classical music, neurological disease … Some aspects I found rather less than convincing – the accident, the escape, the ending; but for the most part he has woven an intricate and compelling story. And he’s gone right to the kernel of the ethical debate, so this book sits comfortable in my list of novels dealing with assisted dying.

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A moral quagmire

I hope you’ve been rejoicing in the several days of silence. Things have ratcheted up several gears chez moi, though – final proofs for the book have been checked, a new website created, this website updated … I won’t bore you with the rest or the detail.

And now, here I am back at the Book Festival again, in the Spiegeltent this evening. The subject of the session is … don’t groan … The Ethics of Dying. Look, I didn’t put this Book Festival programme together!

The Spiegeltent

But the organisers reckon it’s expedient to consider whether it’s ‘time to reevaluate our thinking‘ on this subject now we have so much power over life and death, and advances in medicine are allowing us to keep people alive so much longer than nature ever intended. So who am I to argue? It’s a question I’ve often asked in conferences and seminars: just because we can, does it mean we should?

And on the flip side, what do we think about assisted suicide for those people who’ve had enough of life? Is it right to stop them? OK, we did that last week too, but hey ho.

Inside the Spiegeltent

It’s a strange feeling sitting here. Exactly five years ago I was wheeled into this very tent as the author of Right to Die, debating this very issue alongside Baroness Mary Warnock, with Richard Holloway in the chair. Tonight the author is Gavin Extence and the academic, Professor of Divinity, David Fergusson, with Richard Holloway in the chair.

Extence has recently published his debut novel, The Universe versus Alex Woods, which is curiously similar to Sparkle and Dark’s, Killing Roger, which I told you about last week: young man meets old man, old man wants to die, young man has to decide where he stands. But he’s not talking about it; he’s presenting the case for assisted dying based on the research he did for the book. Curious choice, and I hear mutterings from various ‘older’ folk about his not having lived yet, all theory, second hand.

Richard Holloway maintains his customary firm grip on proceedings, dismissing irrelevancies and keeping the debate focused. He sets the tone for a much more moderate discussion by saying it’s not a good/bad divide, but a matter of opposing goods, and both speakers echo that. And he points out that it’s right and proper that we should be discussing this matter and feeling a sense of anguish about it. We shouldn’t be dismayed that we find it difficult.

Extence’s main points are that technology and advances in medicine are the main reasons why we have a problem with aging or ill people living beyond the point they would choose to. Dwindling resources and poor care mean we are heading to a situation where only those who can afford it will be able to die well, so for him the pressing issue is freedom of choice. His solutions: learn from the experience of other countries who allow assisted dying; clarify the law for relatives; educate society in relation to end of life; fund quality research into these horrible diseases.

Fergusson makes the point that doctors no longer have the latitude to quietly help people to die, and in consequence the old fear the dying process. Repeated parliamentary bills have polarised opinion unhelpfully, with both sides tending to caricature the other and present them in an unfavourable light. As a theologian he declares himself in support of the notion that life is God-given and to be used responsibly, but he fully accepts that some lives should not be prolonged unnecessarily, and that people should be able to exercise some choice in the manner of their dying. He further concedes that even though he might not choose to end his own life, he feels uncomfortable with the idea of imposing his view on others. Hurrah! say I.

The problems for him relate to public safety, not prohibition. The difficulties of specifying safeguards, knowing when death is less than 6 months away, being sure the wish to end a life is sustained and for the right reasons. He fears a shift in the law might make certain people more vulnerable and divert attention away from good palliative care. Doctors do not want to take on this task, and Fergusson feels it shouldn’t be forced on them. But he doesn’t like the idea of specialists in ‘killing’ either. He concludes that the law must be tailored to all, not just to hard cases. Therein lies a real problem, say I.

There are seven disabled people in wheelchairs at the front of the tent and predictably they leap in with questions. Most of the comments lament attitudes and provisions which make life intolerable; things which could be improved with more money and better education.

An advocate of assisted dying calls for accuracy in quoting statistics: the incidence of assisted suicide abroad is very small and most people who subscribe to it never actually avail themselves of the drugs; it’s more an insurance against a lingering or intolerably undignified or painful death which in fact allows them to live longer.

As always, the particular difficulties of those who are no longer mentally competent to make the choice for themselves comes up. And the importance of compassion and excellent care. Assisted suicide is not a genuine choice if it’s in response to substandard provision.

David Fergusson picks up on the repeated invoking of human rights and autonomy, reminding the audience that all of us operate in relation to other people; what we choose for ourselves affects them too. Wise words.

Richard Holloway sums up the discussion as temperate, elegant, modest and humane, and he takes two votes at the end. There’s a clear majority in favour of having some provision for people in certain circumstances to be assisted to  commit suicide. And no one has changed their mind as a result of what they heard tonight. C’est la vie!

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Assisted dying: whither next?

Wednesday afternoon

Here I am in a lecture theatre in Bristo Square. Outside the Fringe is in full giddy flight; inside faces are serious, the mood expectant. This is the debate organised by the Mason Institute for Medicine, Life Sciences and the Law, in conjunction with Sparkle and Dark Theatre Company, to which I was invited a while back, and I’m feeling devoutly thankful I’m on the listening side of the room with about 60 other folk, not in one of the hot seats on the other side of the table.

Right to DieAs regular visitors to this blog know, I wrote a book on this subject, called Right to Die. I even appeared at the Edinburgh International Book Festival to talk about it. But I still agonise over the issues. The arguments and counter-arguments are so complex and emotive, the issues so finely nuanced, and every time I listen to them I feel huge sympathy for each side. As preparation for today I’ve been reading relevant papers – eg Margot MacDonald’s draft Assisted Suicide (Scotland) Bill, and a position statement from The Scottish Council for Human Bioethics – and I don’t envy anyone having to hold all this stuff in their heads. I went crazy with a highlighter, and even so only just stayed abreast of the pros and cons.

So who are these folk who’re putting their heads above the parapet? Patrick Harvey, MSP, Professor Graeme Laurie (Professor of Medical Jurisprudence at the University of Edinburgh), Professor Calum McKellar (Scottish Council for Human Bioethics) and Lawrence Illsley (Sparkle and Dark Theatre Company). In the chair, broadcaster Sheena McDonald.

We hear the usual stuff: the present legal position; how Margot McDonald’s proposed new bill differs from the last one; the experience of assisted death in Oregon, Belgium and Switzerland; the pros and cons of assisting deaths. Words like dignity, respect, autonomy are used frequently, everyone wanting us to believe they respect dignity and autonomy totally.

The politician reminds us that parliament debates many moral issues, (sexual, reproductive etc), but how to help the dying – a condition we must all face – has taken the longest to resolve. Sobering thought. But the defeat of successive proposed bills has shown us how reluctant our friends in both Westminster and Holyrood are to grasp this nettle. Margot MacDonald has limited her new bill to those who are terminally ill, facing imminent death, in order to overcome some of the resistance. It’s no earthly use to folk like Tony Nicklinson and Diane Pretty, trapped in disintegrating bodies, facing appallingly protracted dying – and these are the ones I agonise over the most.

The poet/musician on the panel homes in on society’s reluctance to talk about death; the importance of thinking and talking about these issues while we’re conscious and sentient and able to articulate our choices. Good man.

The audience give Professor McKellar a rough passage (he’s opposed to assisting death). They really don’t like his insistence that all human life is equally valuable, society is about dependence and care of each other, and an assisted dying bill would mean that some lives were deemed less worthy than others. From all sides come protests – the cruelty of keeping people alive in appalling conditions; the right to choose either way; the iniquity of autonomy limited by the moral qualms of others; the limitations of hospital, hospice and palliative care; the wrongness of assuming other people’s reactions; the wrongness of imposing theoretical notions of respect onto others.

The house having shown a clear preference for some way out for those facing horrible undignified or painful deaths, the experts and experienced then pitch in with facts and details about the patchy nature of palliative care provision, the lack of hospice beds, the effect of just knowing there’s a way out, the position of minors. I’ve heard it all before, but I’m still glad I’m not on the panel – there’s a limit to the number of times you can simply agree with the challengers.

This whole debate was sparked off by Sparkle and Dark’s play, Killing Roger, which I reviewed on Monday, so it’s fitting to let Lawrence have the last word. The arts – plays, novels etc – allow conversations to happen. They stimulate and engage people. They inspire them to explore the issues that bit more, and encourage reasoned thinking, he says. I agree. This is precisely why I write novels on these issues; not to impose my ideas and opinions, but to encourage others to form their own.

 

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