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.
Dignifying death
Tomorrow 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.
Earlier 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.
Peter Smedley with Terry Pratchett attending
People who wished they’d had this opportunity but hadn’t
Relatives grateful that their loved ones did have this chance of escape
Mothers who wished to or did take the lives of their children.
Mother wanting to end life of two disabled adult children
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
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
(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.
Be careful what you wish for
Well, my latest novel, Over my Dead Body, has finally left my safekeeping and gone out into the big old world for review. It’s always painful to make that leap. As the adage goes, Perfection is always one more draft away, and I could tweak for ever. But there comes a point where you have to say enough’s enough and let it fly the nest.
However, the characters are still very much living here with me. I keep waking at 4 or 5 in the morning and listening in to their conversations. And I confess I have sneaked back to the manuscript several times and changed the odd thing or two. So I’ve decided to give myself a new deadline and a new task to try to break the cycle: get all my folders (containing information for other novels) up to date by the end of this week. And that’s where today’s topic came crashing in. A disturbing story from the week’s papers.
The first headline jumped out at me: Belgian twin brothers choose euthanasia rather than blindness. Assisted death’s one of my pet subjects, as you know. The second headline ran: Euthanasia twins ‘had nothing to live for’. Marc and Eddy Verbessem were 45 years old, both cobblers in Antwerp, who’d lived together all their lives. They were both born deaf, and developed their own form of communication. They also suffered from a whole range of other genetic medical problems.
Now, just in case you hadn’t realised, Belgium is one of those countries where euthanasia is allowed if those requesting it are able to make a sustained and competent case for it, and if a doctor judges that they’re in unbearable pain. That’s been the case since 2002. But … neither of the twins was terminally ill; neither was in extreme pain. They’d sought death because they’d now found out they would soon go blind. They couldn’t bear the thought of being unable to see each other again, and losing their independence. Think about it for a minute. Is that adequate justification for killing two middle aged men, d’you think? Would you do it?
The Swiss position, which we hear much more about, is different. There the patient must be able to take the lethal dose themselves – assisted suicide. Would you find this alternative more acceptable?
The Verbessem brothers’ local hospital turned down their application for euthanasia. Indeed it took them almost two years to find any institution that would administer the lethal injection. Two years! Imagine what that was like. The doctor who eventually agreed considered that there was ‘unbearable psychological suffering’, (a subjective assessment to some extent at least) and the deed was finally carried out on 14 December.
I read on. And found a chilling additional note in the article: ‘Just days after the twins were killed by doctors, Belgium’s ruling Socialists tabled a legal amendment that will allow the euthanasia of children and Alzheimer’s sufferers’ … ‘to take better account of dramatic situations and extremely harrowing cases.’
What would you say to that?
Not every one agrees even in Belgium. Last December the European Institute of Bioethics based in Belgium published a report that expressed concern about the absence of effective controls. It notes that over a period of 10 years and 5,500 cases of euthanasia, not one had been referred to the police for investigation. They fear the interpretation of what is allowed is spiralling out of control. What would you say?
We so often skim articles and books picking up the main thread but not pausing to consider the reality or consequences of what we’ve been told, and I was in danger of doing exactly that with this story. But the more I read the more I was challenged. So the thought for the day on my perpetual calendar was particularly apposite: Readers are plentiful; thinkers are rare. (It’s from Harriet Martineau – a Victorian writer and social theorist of some repute, in case you haven’t heard of her.)
This snippet certainly made me think.
(Apologies if you have more accurate knowledge from the inside; I could only go by what was reported in several papers and on the net. Don’t hesitate to correct me if you know better.)
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?
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.
‘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.
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!
Not 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?