Hazel McHaffie

assisted suicide

Hay Festival: second instalment

They say authors should wait a decent interval before starting to write about pandemics. Well, who exactly are ‘they’, these authorities who know such things, huh?

Even before Covid struck, Val McDermid had already written a radio play about a scenario where a pathogen appeared which no drugs could treat, so she was way ahead of the game. Didn’t stop her publishing it. As she said: There’s nothing more dramatic than the end of the world as we know it.

She then collaborated with a graphic artist, Kathryn Briggs, to produce a graphic novel based on the play: Resistance. Their discussion at the Hay Book Festival with Louise Welsh about how they worked together, was both insightful and humorous. When Professor Welsh said that no person had been left unchanged by the experience of the last fifteen months, she hit on a fascinating fact leading into a fertile line of thought.

Lionel Shriver had just started her latest novel when the pandemic struck, and she’s woven topical lines and references into her story of a couple in their fifties, both medical professionals, contemplating a joint suicide when they reach 80. What would they miss/be spared? What possibilities might present? Dementia? A nightmarish Cuckoo’s Nest retirement home? The end of civilisation? A cure for aging? She has written, and included in the book, twelve alternative scenarios, all with different but parallel endings. As you know, assisted suicide has been an issue very much in my sights for many years, so I’m looking forward to reading  Should we Stay or Should we Go.  I loved the bit she read aloud, and reviews tell us it’s packed with humour as well as provocative thoughts.

And the pandemic theme even cropped up in a session where comedian/actor Frank Skinner was interviewed by fellow comedian/actor/satirist Marcus Brigstocke about his book, A Comedian’s Prayer Book. Skinner is a devout Roman Catholic and spoke movingly of his commitment, and response to taunts, revealing wide reading and studying alongside much heart-searching. Brigstocke said at one point: ‘I think you are this pandemic’s Galileo!‘ Skinner certainly had clever answers for anything thrown at him, chortling at the excitement of not being quite sure where any sentence would end up, but he came across as respectful of others’ opinions, non judgemental, eloquent and measured, whilst openly sharing his own moral code. The whole event was a magical mix of laugh-out-loud fun with serious and warming reflection. And a fitting ‘last Hay event’ for me this year.

Massive thanks to all who brought this fantastic festival to our homes. I for one, hope it will continue to offer an online version.

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Is it ever right to take a life?

With all the events marking 75 years since D-Day and the Battle of Normandy, and other war-related events, my mind has been travelling the well-worn path of … is it ever justifiable to take a life? And is there a kind of life that’s worse than death?

Then for the last two Thursdays those questions have swirled again, watching Susanna Reid interviewing inmates awaiting execution in maximum security prisons in the USA for her series: Death Row: Countdown to Execution. The state of Texas supports the death penalty, and the locals appear to take it in their stride, but Susanna found it unsettling just being in the town with the execution chamber, to know exactly when a human being was being walked to that gurney, strapped down, given that lethal shot of Pentobarbital. She wanted to know exactly what was happening, how everyone felt – the convicted man, the family, the witnesses, the townspeople. She’d met these men briefly in the last few days of their lives, and in spite of their criminal backgrounds, it clearly troubled her.

Many inmates are held on Death Row for decades (the average 12 years) and massive amounts of money are spent on appeals even up to the eleventh hour. Fewer than 2% are exonerated but the process has to be gone through, seeking additional years or days of life if nothing else. For those who are the victims of the crimes (and that often includes the family of the convicted man) the death brings a form of closure; but opponents believe that society should not sink to their level. After all, as they said, we don’t rape rapists, we don’t steal from burglars; why should we kill murderers? ‘We should be better than that.

And against all this my mind goes to my own area of particular interest, viz the issues around assisted death for people on a different kind of trajectory: those with incurable, degenerative illnesses; trapped for years in many cases, with no hope of a reprieve. Their own kind of death row; their own kind of hell. And our society – too humane to kill convicts – is also unwilling to countenance patients ending their own lives when the pain, the suffering, the indignity, are intolerable. Is this justice? Is this fair? Is it humane? As Scottish former Rugby Union player Doddie Weir (who has Motor Neuron Disease himself and has just buried his mother after a fairly short experience of cancer) said this week: Being a farming boy, when there is no hope with the animals you are able to put them out of their misery, but with humans it is not allowed. It does not seem fair sometimes.

So many truly difficult questions; so many nuances and valid perspectives. I studied this topic in depth before writing Right to Die, published in 2008. I’ve repeatedly returned to it since. Eleven years on we’re no further forward in terms of the law. Assisted suicide is still illegal; doctors who help a person to die still face a jail sentence of up to 14 years. However, public opinion has swung much more towards some provision to help people caught up in these intolerable situations, helped in no small measure by the brave souls who have shared their harrowing experiences openly. Then in March this year, the Royal College of Physicians declared neutrality on the subject. And this week the Royal College of General Practitioners has said it will consult its 53,000 members on whether the time has come to drop their opposition to assisted dying. The wheels grind oh so slowly, but they do seem to be turning.

What do you think?

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Splinter the Silence

In Splinter the Silence, Val McDermid explores the issue of internet trolling/hate mail/harassment/villification/abuse of women who put their heads above the parapet to speak about discrimination and injustice. In this fictional case, the public figures are apparently hounded to the point of suicide, although the reader knows from the outset that they are actually being murdered, each killing disguised to mimic the suicides of famous feminists. The murderer has his own reasons for objecting to women who step outside their domestic role and tell men what’s right or wrong.

Well, sadly, I know people in real life who would still tether women to the kitchen sink if they could. I have myself come in for criticism for being a woman and daring to voice and defend an opinion; for having ideas above my subservient station. Fortunately, positive responses have far, far outweighed the negative, so it hasn’t been that difficult to maintain perspective, but then, I’m not an A-list celebrity, so such pernicious or malicious activities don’t hit the headlines, the number of critics doesn’t reach stratospheric levels. Nevertheless, I can vouch for the discomfort of being on the receiving end of such unjust vitriol. It’s not as far fetched as you might imagine.

This week I’ve been thinking a lot about the matter of standing up and being accountable, and about all the cases coming to public attention right now that lend themselves to strong column inches. I’ll itemise a few, but please note, I have no privileged access to information on any of them, so the facts I include are as subject to distortion and prejudice as any other media-generated stories.

OK, serious time, folks. And in every case multiply the questions many times over.

Ten days after legally completing his transition from female to male, a transgender man, TT, underwent intrauterine insemination, resulting in a pregnancy. He has now taken his case to the High Court in an effort to be the first to have no ‘mother’ registered on the birth certificate. Hello? ‘Cake’ and ‘eat’ instantly spring to mind. Expensive legal and parliamentary resources are to be deployed to look into the ramifications of the current laws governing fertility treatment.
One British doctor is reported as saying, now that it is medically possible to transplant a womb into biological males, it would be illegal to deny them access to this opportunity to carry a child to birth. What do you think? Would it?
What about the rights of the unborn child?
One author of a letter to the Telegraph outlined the scenario and concluded, ‘The lunatics truly have taken over the asylum.‘ Do you agree? Or is this a case of establishing the deep-seated needs of people who have struggled all their lives with their dysphoria?

Then there’s the issue of rights and dignity and bodily integrity and mental welfare of female athletes with naturally high testosterone levels? Renewed calls have been made for such women to be given drugs to lower their levels before they compete, or for them to be channelled into other categories such as intersex competition.
What about the effect on these sportswomen of the abuse and accusations levelled at them?
Is it a fair playing field?
Other scientists have cast serious doubt on the integrity of the research behind this latest demand; how many people either know of this or have the scientific or mental wherewithal to judge the issue fairly?

Exactly four years ago, on their half-term break, Shamima Begum and two school friends fled this country, aged only 15, to join Isil and become jihadi brides. In those years, Begum has borne three children, two of whom died of illness and malnourishment. She has told the world she doesn’t regret her actions, that she was unfazed by the sight of severed heads, that’s she’s into retaliation, but wants to bring baby number three back to her home country.
We have no way of knowing just how much coercion lies behind her public pronouncements, but her responses to interviewers chill the blood. The government have refused to jeopardise more lives by sending anyone to rescue her, but at first the lawyers told us, she’s a British citizen, she cannot be rendered stateless, so legally speaking, there is no choice; we must have her back. Then a couple of days later we hear that no, the government are not obliged to repatriate her … and indeed the Home Secretary has revoked her British citizenship … she has dual Bangladeshi nationality … the baby has a Dutch father  …
What consequences should this girl’s actions have?
Whose rights take precedence?
What kind of a future lies in front of her or her baby son?
Who should assume responsibility?
Is it a measure of our own more civilised behaviour that we rise above the terrorists’ creed and show compassion now towards this girl?
What of all the other people who’ve dabbled in terrorism but who now want to return?And a zillion other questions.
No wonder opinion is divided.

Retired accountant, 80-year-old Geoff Whaley, diagnosed with MND two years ago, decided that an agonising and undignified death was not for him; he would go to Dignitas in Switzerland for a controlled end to his life. But his careful planning was threatened days before his proposed departure by the appearance of police at his door, interviewing his wife of 52 years under caution, in response to an anonymous tip-off. It was this unwelcome intrusion, coupled with the laws of this country opposing assisted suicide, not his impending suicide, that engendered fear and anguish in this man, provoking him to protest to the BBC and MPs:
‘The law in this country robbed me of control over my death. It forced me to seek solace in Switzerland. Then it sought to punish those attempting to help me get there. The hypocrisy and cruelty of this is astounding.’
Put aside for a moment your personal views on assisted dying, and ask, what could possibly have motivated someone to blow the whistle in this way at the Whaley’s eleventh hour? Genuine concern, self-righteousness, extreme religious views, a sense of public duty, malice? Or what?
Should other people’s private scruples be allowed to control the rights of families in such tragic circumstances?

Imagine being born in war-ravaged Yemen, stranded in a hospital in a country where social, political, economic and health care systems have all collapsed, where about half of the 28 million inhabitants are living on the brink of famine. Now add to that the babies being conjoined twins. Their picture appeared in the British press; the Yemeni doctors appealing for help from the UN to get them to Saudi Arabia.
What should our response be?
What is our responsibility in such cases?
What chance did they realistically have?
At least 6,800 civilians have been killed and 10,700 injured in the war, according to UN statistics. Did these two extremely vulnerable boys warrant such an exceptional rescue mission?
In the event they died in their homeland, but the questions remain.

I could go on … and on …

All the youngsters who become victims of disturbing material on line … the BBC being criticised for not offering abortion advice after an episode of Call the Midwife featuring a backstreet abortion … impecunious students being paid to contract dangerous tropical diseases like typhoid and malaria in the search for new effective vaccines … the matter of a 97-year-old Duke of Edinburgh flouting the country’s law on the wearing of seatbelts …

I have opinions on all these issues. You don’t have to listen to me. You are perfectly entitled to disagree with me – fundamentally and even vociferously. But you ought not to shut me up! Especially not in a threatening or damaging way.

 

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Good care? What is it?

Well, October has begun with a rash of developments in my world.

Assisted dying lawsTo begin with, another state in the USA, California, has made assisted suicide legal as from 1 January next year. They are the fifth state to do so. The law, based on a similar measure in Oregon, allows doctors to prescribe drugs to end a patient’s life if two medical practitioners agree the person has only six months to live and is mentally competent. Interestingly, in this case, the law as it’s presently written, will expire after ten years unless extended. Apparently this was a compromise made for those lawmakers who fear unintended consequences such as targeting of the poor, disabled or elderly. Sounds like a sensible caution to me.

This week too, we’ve heard of a report by the Economist Intelligence Unit, which finds the UK ‘the best place in the world to die’ as the newspapers put it; top of 80 countries involved in their survey when it comes to end-of-life care. Key factors are identified as a strong hospice movement, palliative care integrated into the NHS, specialised staff, and hospital/community integration … hmm … more of this anon.

Then, building on this, Baroness Ilora Finlay, a major spokesperson on the topic, and herself a former medical consultant in palliative care, came on TV this week to talk about her draft Palliative Care Bill which tries to address the disconnect between medical and social services in care of the dying; to provide equitable and efficient care for all. Being top in the survey is encouraging, she says, but there’s still plenty of work to be done to ensure excellence across the board. Indeedy!

The emphasis is on really listening to what the families need at a time when they are caring for a loved one, and providing a central hub for familes to liaise with, in order to avoid the frustration of time and effort wasted searching for the right people to help.

Aged hands claspedThis all resonates for me at the moment. Someone I care about was recently admitted into the acute NHS system, into a vast, bright new shiny hospital, for management of her broken hip. Sybil (not her real name) is in her nineties, she has dementia, she is bewildered and confused by the alien environment, as well as immobilised by a fracture and on medication for pain relief. I’m quite sure her actual medical treatment was expert: the hip was fixed rapidly. But – a big BUT – the staff in the two wards Sybil was placed in were openly hierarchical, those with power seemed to have no time to listen, no willingness to know what would help to keep this lost wee soul calm and secure. It was down to us who know and love her to try to fill these gaps as best we could in the times we were able/permitted to be with her. And it was obvious that Sybil was not happy; she caused mayhem on more than one occasion!

This week she’s been transferred to a low-tech community facility; older, more run down, higgeldly-piggedly. But the difference inside the ward housing her is palpable too. Everywhere you go staff are friendly and helpful, anxious to accommodate the needs of the patients in their orbit; anything that will help Sybil settle and smile is welcomed. We can walk away knowing she’s in good hands. She’s already visibly more relaxed.

Good care is so much more than up-to-the-minute medicine. And when it comes to elderly people with dementia, it’s often the little things that make the difference between wanting to go on and preferring to die; little things that tell them they are valued and cherished and understood.

Old fashioned pen and inkFifty years ago I wrote an essay – using this very Parker pen – about the care of patients being so much more than delivering technical procedures efficiently. It won a prize from the British Medical Association no less! Back then the medical technology and capability we take for granted in the twenty-first century was undreamed of, but basic human needs remain much the same. That message is needed every bit as much. Let’s not lose sight of this in all our cleverness.

 

 

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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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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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Be careful what you wish for

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

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

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

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

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

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

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

What would you say to that?

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

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

This snippet certainly made me think.

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

 

 

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Locked in to a fate worse than death

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What would your solution be?

 

 

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Honour killing

If you are of a sensitive disposition and a member of the female persuasion you might choose to look away NOW – you can come in again at the asterisk below.

Ahah! Did you think I was going to talk about the BBC documentary on assisted suicide? Sir Terry Pratchett investigating the experience of the Dignitas option in Switzerland? Yes, I know it’s my kind of subject, but it seems to be being done to death (sorry!) elsewhere, so I’m not. Besides I feel too disturbed about what I saw to write about it at the moment.

No, today I’m turning my beady eye onto a different controversy. Women: their status,  their potential, and how they’re treated.

I didn’t go to the Hay Festival this year, but I did follow reports of it. So I heard about VS Naipaul (winner of the 2001 Nobel Prize for Literature)  insulting women big time. None of them, past or present,  could possibly be as great as he is, he declared. Full stop. (He even singled out Jane Austen as way beneath him. Jane Austen!!)

Of course, as you probably know, his history is littered with offended people. Why, his own philosophy includes: ‘If a writer doesn’t generate hostility, he is dead’.

But this time his boasting about his own achievements and his relegation of all women writers as doomed to inferiority by their ‘sentimental’ attitudes and ‘narrow view of life’, hit the raw nerves of way over half the population.  He even compounded his sweeping assertion with this partial explanation: ‘And inevitably for a woman, she is not a complete master of a house, so that comes over in her writing too‘. Hello?!!

OK, you might say, what would you expect from someone whose private life is a study in misogyny and discrimination? Well, I for one would prefer to see great talent and acclaim generating humility and gratitude and deference to the success of others. Not arrogance, unwholesome pride and cruelty. End of rant.

*(Those females of a sensitive disposition may re-enter the fray here.)

So I turned with relief to a story of the suppression of women which sets a context of triumph over evil and the power of love.

A Thousand Splendid Suns‘For almost three decades now, the Afghan refugee crisis has been one of the most severe around the globe. War, hunger, anarchy, and oppression forced millions of people to abandon their homes and flee Afghanistan to settle in neighboring Pakistan and Iran. At the height of the exodus, as many as eight million Afghans were living abroad as refugees.’ So says Khaled Hosseini in the afterword to his novel, A Thousand Splendid Suns.

Hosseini was born in Kabul, Afghanistan and became US goodwill envoy to the UN Refugee Agency, so he speaks with both knowledge and sincerity. That authenticity shines through the story of the illegitimate Mariam, the ill-fated childhood sweethearts Laila and Tariq, the troubled children, Aziza and Zalmai. As does the author’s empathy and humanity.

But it’s the quiet depiction of abject poverty, of domestic brutality and female suppression, of sacrificial marriage between young teenagers and much older men, that makes this book the moving and sensitive tale it is. We in the UK read of honour killing with horror in our hearts, but Hosseini conveys quite masterfully the essence of a culture that permits such acts. We see how it happens that wives submit to constant abuse, husbands lock their wives out of sight, fathers kill or reject their daughters, and laws condone such discrimination.

Hosseini’s understated prose is eloquent in its simplicity.

Laila marvels that ‘… every Afghan story is marked by death and loss and unimaginable grief. And yet … people find a way to survive, to go on.’

Mariam’s mother warns her from infancy: ‘Like a compass needle that points north, a man’s accusing finger always finds a woman. Always. You remember that, Mariam.’

One of the judges in the trial of Mariam years later says, ‘God has made us differently, you women and us men. Our brains are different. You are not able to think like we can. Western doctors and their science have proved this. This is why we require only one male witness and two female ones.’

Naipaul would fit right in here, wouldn’t he?

As the cover says: ‘A Thousand Splendid Suns is an unforgettable portrait of a wounded country and a deeply moving story of family and friendship. It is a beautiful, heart-wrenching story of an unforgiving time, an unlikely bond and an indestructible love.’ Indeed it is.

And all the reader’s sympathies are with the downtrodden women. I salute Hosseini as a true master-storyteller.  As for self-acclaimed Naipaul, well, his ranting and posturing say much more about him than about women.

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Medical ethics writ large

What a week since I last posted a blog! The news has been a positive playground for medical ethicists!!

IVF clinics reported to be destroying embryos with minor conditions; a ‘genetic breakthrough’ which could help treatments for breast cancer to be tailored to individual need; a mother who forced her son to fake illness being sent to prison; a manager of a home accused of giving elderly residents overdoses of drugs; a powerful torch being trialled in the detection of malignant tumours; patients who travel to Switzerland to die in Zurich’s suicide clinic potentially facing a £30,000 death tax; the novelist, Martin Amis, recommending ‘euthanasia booths’ on street corners where elderly people could end their lives with ‘a Martini and a medal’; a girl of 5 who suffered brain damage during labour being awarded £1.25m by an Essex Trust … enough! enough!

Crucial Decisions at the Beginning of LifeRight to DieNot surprisingly given my overt interest in the topic (Crucial Decisions at the End of Life and Right to Die) I want to home in on the matter of assisted death. Yes, again! Because it’s been a big week for this topic. Lots of column inches; lots of airtime devoted to it.

In 2007 Tom Inglis fell out of an ambulance in which he was being treated following a pub fight. He sustained brain damage and was paralysed. This week (my blogging week ie) his mother, Frances Inglis, was jailed for life for killing him with an overdose of heroin – on the second attempt. She really really intended to kill him this time, no doubt about that. She posed as his aunt to get admittance to his nursing home, she was armed with a syringe and £200 of heroin, she wedged an oxygen cylinder and a wheelchair against the door and poured strong glue into the lock to delay anyone entering for as long as she could. But, ‘you cannot take the law into your own hands and you cannot take away life however compelling you think the reason,’ said the judge, before telling her she must stay in prison for at least nine years. Outside the court Tom’s brother praised her courage and love. He asked, how could it be legal to withhold food and drink to allow a patient to die slowly, but not legal to end suffering in a quick and calm way. But a crucial point here is that Tom wasn’t requesting death himself. And at least one doctor predicted that he would eventually recover many of his faculties.

Kay Gilderdale’s daughter, Lynn, did request that she could end her ‘miserable excuse for life.’ She’d had ME for 17 years, she was in excruciating pain, and she’d had a premature menopause at the age of 20. Kay provided her with the means to do so. The 31-year old injected herself with the heroin, her mother topped it up with more of the same plus sleeping pills and antidepressants and injections of air into her bloodstream. She too really really intended her daughter to die. But this week she has been acquitted of the charge of attempted murder. Nevertheless she will have to live for the rest of her life with the memories and knowledge of what she has done.

On the same day that Frances Inglis was sentenced to nine years in prison, three senior judges were deciding that an Asian businessman, Munir Hussain, should walk out of prison, his sentence for grievous bodily harm (after beating a burglar with a cricket bat) replaced with a suspended sentence. Justice, compassion, mercy, upholding the law … all the reasons are trotted out for the differing penalties.

But what would you instinctively do if you found a menacing burglar threatening your family? What would you do if your daughter/son was lying in torment, physical and/or mental and begging for your help? Or if you were on the jury deciding the fate of a mother who has deliberately killed her child?

So-called ‘mercy killing’ raises powerful emotions. Campaigners are re-doubling their cries for a change in the law. The current attempts to do so hinge around cases where people are wanting to end their own lives because of terminal illness or intolerable suffering. Similar arguments; important circumstantial differences. But the potential consequences of such a change are sobering too. Doctors under pressure to speculate as to the time left to give credence to the ‘terminal illness’ (the Lockerbie bomber case springs to mind), disabled lives categorised as inferior and worthy of terminating, patients under pressure to end their lives before they become a burden or inconvenience, a slippery slope to euthanasia of the unwilling … You’ll have read the lists too.

Many people face the dilemma of deciding between two tragic choices, not just the few who hit the headlines. Some of them contacted Any Questions? and Any Answers? this week each with their own painful story. I’ve heard many more. I’ve been personally involved in such cases. Some families go ahead and break the law, some think it would be right to but can’t bring themselves to perform the act, and others believe life is sacred and not to be cut short by human hand. And opinion is fierce on both sides.

Independent MSP, Margo MacDonald, found the same thing when she listened to people caught up in these difficult questions, and her appreciation of the fine nuances is reflected in her proposed End of Life Assistance (Scotland) Bill published this week. It’s hedged about with safeguards:
– a minimum age of 16
– at least 18 months registration with a GP in Scotland
– late stage terminal illness or a degenerative condition or permanent incapacity
– intolerable life
– agreement by two medical practitioners
– a psychiatric assessment of capacity to decide
– 2 witness signatures
– a cooling off period of two days.
She’s a persuasive campaigner and her own situation (she has Parkinson’s disease) gives her a strong platform. But no-one knows how her parliamentary colleagues will react (this is not a vote-winning cause) and without their support it can’t even get through to the next stage. But if it does become law then Scotland could become the first part of the UK to legalise assisted suicide, so it’s a critical issue.

MSPs are expected to vote on this Bill in the autumn – a free vote so they can go with their conscience and not along party lines. Keir Starmer, the Director of Public Prosecutions, is due to issue new guidelines on assisted suicide within the next eight weeks.

Which way would YOU want them all to go?

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