Hazel McHaffie

disability

Dignifying death

QuestioningTomorrow the Assisted Dying Bill is back before the House of Commons yet again. I wonder if your views have changed since it was last debated.

It’s an age old question, isn’t it? 500 years before the birth of Christ, Euripides wrote: ‘I hate the men who would prolong their lives / By foods and drinks and charms of magic art / Perverting nature’s course to keep off death / They ought, when they no longer serve the land / To quit this life, and clear the way for youth.’

And here we are, 2600 years later, with an aging population, limited resources and vastly improved medical capability. Globally, the number of over-65s is expected to triple by 2050, with all that that implies. Of course, no politician will ever advocate that those who ‘no longer serve the land’ should choose suicide. But many aged and infirm people would choose death for themselves rather than indignity or slow decline or suffering. I’ve known many such – one just this week. And yet the current law prohibits assisting them towards that end. Is this a safeguard or a shackle?

During the Festival last month I went to a show which dealt with the quandary elderly folk can find themselves in: specifically not wanting to be kept alive, not wanting to be taken into hospital/care, not being listened to. In the drama, by the Jealous Whale Theatre, terminally ill Wendy’s grandson, Edmund, pleads with the authorities to respect her wishes; but the powers that be insist that there are ‘safeguarding’ issues and their hands are tied. In the end Edmund takes matters into his own hands, smothers his gran with a pillow, and then sits quietly waiting for the consequences. Cleverly performed in the intimacy of a ‘Wendy House’, it forced the audience into close proximity with the protagonists and their moral dilemmas. The play resurrected a lot of the old questions for me.

I'll See Myself Out, Thank YouEarlier this year I also read (and reviewed on this blog) ‘I’ll See Myself Out, Thank You Afterwards I went to the internet and looked at videos about people who have made a choice one way or the other. I was staggered by the number available, and had a rather depressing day watching them all, especially the touching scenes of farewell with loved ones. I don’t recommend it!

But I thought I’d give you the links to a selection of them just in case you want to select any to help you think through the arguments for yourself. I apologise for the imbalance; I’d have liked to be even handed, but far more pro assisted death than against seem to commit their views to video.

The last days, hours, minutes of a person’s life before they took the lethal dose, explaining their position and support for assisted suicide.

Cocktail of drugsCraig Ewart

Brittany Maynard

Man with AIDS in Oregon

Michelle Causse

Peter Smedley with Terry Pratchett attending

John Elliott

Susan Griffiths

Dr Donald Lowe

Gloria Taylor

People who wished they’d had this opportunity but hadn’t

Debbie Purdy

Convicted killer in Russia

Relatives grateful that their loved ones did have this chance of escape

Brother of an American

Mothers who wished to or did take the lives of their children.

Mother wanting to end life of two disabled adult children

Mother who did kill daughter

Patients lingering for years and years in an appalling state while everyone felt powerless to release them

Indian nurse sodomised and almost strangled

Several illustrative cases put together

Elderly viewpoints

The lengths friends and family would go to to support the settled wish of a patient

Two friends dying only one of whom was ill

Disabled people opposed to assisted suicide

Man with ALS

Disabled man

Disabled Alison Davis

(PS. Many years ago I was on a special committee with Alison Davies debating whether or not extremely small sick babies should be treated or allowed to die with dignity. We all found it very difficult to argue against Alison because it felt like devaluing her life. She’s still an ardent campaigner and a powerful voice decades later. And I’m still writing about the subject!)

Speaking of age, I want to add my own wee tribute to Her Majesty Queen Elizabeth II who yesterday became our longest ever reigning monarch. Watching this little old lady still performing her role with dignity, grace and an exemplary sense of duty at the age of 89 is both humbling and inspirational. God bless her.

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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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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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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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