Hazel McHaffie

Dignitas

Points of View

The importance of the point of view (POV) is something that’s drummed into writers: it’s the narrative perspective from which a story is told, important because it’s the angle from which readers experience the plot, observe the behaviour of the characters, and glean information about their world. In fiction, there are four types of point of view: first person, second person, third person limited, and third person omniscient, and the appeal of the story is largely dependent on, and enhanced by, whichever you choose. I sometimes experiment with different approaches to see which provides the best angle.

But recently I’ve been increasingly struck by the importance of POV in understanding a comment or a situation or a belief in real life too. As the late Queen Elizabeth II famously said of Harry and Meghan‘s exposure of ‘their truth’ about the British Royal family: ‘perceptions may vary’. Indeedy! And she was spared the worst excesses of their revelations accruing from Harry’s book, Spare, published this week, and the accompanying interviews.

Take for example, the BBC drama, Mayflies, shown during Christmas week (yep, I know, I know, curious choice of timing for a death drama, but hey ho). Based on a novel by Andrew O’Hagan, it tells the story of the response of one man, Tully, to a terminal diagnosis and 4-month prognosis. He doesn’t want to slide into indignity and suffering and incapacity, he wants to quit at his own time in his own control and commensurate with the way he lived his whole life – joyfully, flamboyantly. He chooses Switzerland. But no man is an island. His life-long best friend, Jimmy, is devastated by the news, and even more so by a request for help to get Tully to Dignitas in Switzerland, especially when it involves deceit and betrayal. Tully’s partner, Anna, is equally shattered by the prospect of losing her love, even more appalled when she discovers she’s been duped, and furthermore she’s implacably opposed to the whole business of deliberately ending one’s own life. Viewed through the POV of each of the three principal characters, the whole dynamic of the story changes. I found this applied powerfully in my own book on this topic, Right to Die.

Then there’s the long-running ongoing battle to change the laws on gender recognition. If you’re a teenage boy desperate to assume a new identity as female, I’m quite sure you’d be thrilled to hear you could do so immediately without medical verification, or years of living in the assumed gender before an official change can be recognised. If you’re a woman who’s been sexually abused and you fear the invasion of private single-sex spaces, you’d probably view the prospect of relaxation in the laws with some trepidation. If you’re a male rapist and you can see new horizon’s opening for access to vulnerable potential victims … well, what would your POV look like?

Oh, and then there were the Royal Institute Christmas lectures where the always-entertaining and erudite Professor Dame Sue Black aka Baroness Black of Strome, brought in a raft of experts to show vividly how so many professionals, all with a different point of view, use forensic science to unravel a pathological scene. Brilliant presentations; fascinating insights; exploring vital factors in the pursuit of justice and fairness.

A smattering of examples, but all highlighting the need to listen attentively to, and respect others’ POVs, and to have the humility to modify our own in response to accumulating knowledge.

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Festival time again

It’s that time of year again: the Edinburgh International Book Festival is in full swing. My happy place!

On Saturday I had the pure delight of listening to three excellent speakers all dealing with topics very dear to my heart, all having just published or just written new books.

Retired neurosurgeon, Henry Marsh, talked about the lessons he learned from admitting his mistakes as a surgeon, and how vulnerable he’s been facing up to his own diagnosis of advanced cancer and his impending death. The transition from one side of the consultation table to the other has proved surprisingly difficult, he admits.  Given his stature and experience, his honesty and humility are compelling, and somehow give us all permission to feel vulnerable and afraid. I’ve read his earlier books and listened to him several times, but with his latest one called And Finally, I fear he might just have laid down his pen.

Abi Morgan, is an award winning screenwriter, with brilliant TV series like The Split, and films like The Iron Lady, to her credit. She’s also dealing with treatment for cancer, but the main message she was sharing at the Festival was the experience of her husband, Jacob, developing a condition known as brain on fire, a form of encephalitis, which caused him to believe she was some kind of imposter. It has taken eighteen months and a long stay in hospital for him to recognise her. She too talked with such frankness and insight. The film rights to this most unusual love story have been sold, with Morgan herself writing the screenplay, and already thinking of POVs and actors – I’m already eagerly anticipating it.

Nihal Arthanayake, an Asian BBC radio presenter, used his wealth of experience interviewing celebrities and interesting people to talk about the art of making conversation. In this digital age where social media is cultivating an increasing sense of narcissism, he feels, we need to learn to take a real interest in people, engage in meaningful empathetic dialogue, and ‘listen to understand’ rather than ‘listening to talk’, as he put it. I totally agree. He’d be just the kind of person you’d want beside you at a long dinner party!

Then, on Monday, this was followed by Amy Bloom talking about her husband Brian’s Alzheimer’s and taking him from the USA to Dignitas in Switzerland to end his life. She’s an author, screenwriter, teacher, therapist, social worker, and spoke so eloquently of the slow realisation of what was going wrong with him, and his passionate wish for autonomy and agency in death as in life, which she respected. In her State of California there is no right-to-die provision, and she vividly captured the hoops they needed to go through to establish his capacity to make this choice even when dementia was taking away so much of his true potential. I loved her robust no-nonsense approach.

Medical ethics is alive and very well in the world of books! What a fabulous opportunity to listen, without interruption or distraction, to these fascinating super-articulate people, for whom writing has been therapeutic and cathartic, to travel with them into some most intimate and troubling places, and to do so from my own home, at an affordable price, choosing just those topics that really float my boat. A brilliant facility which has come out of the pandemic – thank you EIBF.

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Assisted dying … again!

In spite of everything that’s happening in Parliament this week – unprecedented machinations relating to Brexit: rebellions … the prime minister publicly losing his slim majority … the house voting not to go along with his plans … grandees being slung out of the political party they’ve survived for decades … breathless historically significant happenings – in spite of all that, assisted dying has hit the headlines once again.

It must be a surreal feeling, mustn’t it, counting down the days till you die? Rather like life on Death Row.

Sixty-five-year-old Richard Selley is doing just that. Born and bred in the Westcountry (my homeland), he taught Economics at Loretto School in Musselburgh (a few miles from where I live), and now lives in Perthshire. Tomorrow he will die far away in Switzerland.

Four years ago he was diagnosed with MND, and since then he’s been campaigning for a change in the law to allow people in the terminal stages of illness to end their lives peacefully and with dignity. In spite of his struggles with movement and speech, he has managed to write a book, Death sits on my Shoulder, and maintain a blog, Moments with MND.

In a letter to MSPs he makes this heartfelt plea:
‘If the choice of an assisted death was available to me here in Scotland so many of my worries would have been eased and my remaining time would have been spent in better ways than burdensome and complex admin. Instead, that precious time would be spent with my wife, my family and my friends. The current laws (and lack of laws) around assisted dying in Scotland are cruel, outdated and discriminatory.’

And indeed, Mr Selley hugely regrets the necessity to go to Switzerland for this service as he explains here.

Most of this effort has been below the radar, but now, at the eleventh hour, his case has been reported on the national news; during that precious time when he is spending his final week quietly at home with his wife and family and friends, doing ordinary things – like watching box sets, sharing memories. All for the last time. Knowing. Knowing, that tomorrow – Friday 6 September 2019 – he will take that lethal dose of medication, say his final goodbyes. Tomorrow.

He is quick to express appreciation for the ‘outstanding care’ he’s received from the NHS, but he now faces the end phase of this cruel illness, and has decided that enough is enough: ‘As I enter the final stages of this journey, and the prospect of total paralysis, I have decided that I would prefer to leave this world before too much longer. To use the terminology of Brexit, I have had my own little referendum, and decided that I wish to leave rather than remain. I don’t wish to crash out in an undignified manner, so I am hoping to negotiate a withdrawal agreement that will not require a long transition period.’

On top of the mental anguish – which he relates on his blog – it will cost him about £10,000, and he’s very aware that not everyone could afford such a step. He also has to be fit enough to fly, which means taking action earlier than he might if he were able to stay in this country. He can no longer swallow, so he’s practising the movements required to administer the poison via his feeding tube. And on top of all that he’s adamant he must make all the arrangements himself to protect his wife Elaine from prosecution. A tough call indeed.

As he says himself, ‘I think if those who oppose assisted dying could spend just one day in my shoes they would change their view.’ In reality, opponents of legalising assisted dying express enormous sympathy for Richard Selley and others in similar situations, but they say they have to consider wider societal harms, and the potential for abuse and exploitation. Elderly and dependent people could so easily feel under pressure to end their lives rather than being a burden on their families or society. The right to die could soon segue into a duty to die.

In spite of huge advances in palliative care, it’s estimated that eleven terminally ill people die a painful death every week in Scotland. It’s a significant problem. Of course, proposals for a change in the law have already come before Holyrood twice; on both occasions failing to get parliamentary backing, in spite of the powerful voice and image of Margo MacDonald MSP who had Parkinson’s Disease herself and died in 2014. To be fair, public as well as professional opinion has changed following a series of campaigns and high profile cases, but are we ready for the law to catch up? Can such a delicately nuanced matter even be captured in legal terms?

We should all be indebted to people like Richard Selley who use precious resources – energy and time – to bring these ethical dilemmas so vividly and urgently to our attention. I do hope he has the peaceful death he has worked so tirelessly for.

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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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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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I’ll see myself out

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

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

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

I'll See Myself Out, Thank You

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

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

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

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

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

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

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

 

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Starving to death in Britain

She was a political activist from her teen years. But Debbie Purdy rose to fame when from her wheelchair she pleaded for – and won – clarity on assisted dying in 2009. Her memorable comment: “Being allowed to die would help me to live” summed up her thinking. She loved life, even with its significant difficulties, but the current law was leading her towards deliberately ending that life sooner than she would choose. Sad then that in reality, her end was a far cry from the dignified autonomous finale that she fought for in the courts.

She actually died on 23 December, before my last two posts went out, but it didn’t seem an appropriate note for Christmas time or Hogmanay, so I postponed it till today.

Debbie Purdy diesDebbie was only 31 when she was diagnosed with primary progressive multiple sclerosis. 31. She was 51 when she eventually died. 20 years of living with a severely disabling painful disease – outlined in her 2010 autobiography, It’s Not Because I Want to Die. When she appeared before journalists and the public she made no secret of her personal wish to go to Switzerland to die when life became unbearable; all she wanted was assurance that her Cuban husband, Omar Puente, (black, foreign and poor, so, she feared, particularly vulnerable) would not be prosecuted if he assisted her to get there. Her jubilant face when the House of Lords gave that reassurance lives in the memory. Assisted dying wasn’t yet legal but she could now live her life to the full and she was in no hurry to go.

But, when that point of unbearable suffering came, she could not afford the journey to Switzerland. Instead she went into a hospice, where she ended her life peacefully … no, starved herself to death. It took a whole year! How can this possibly be right? Even a few days before her death she was filmed saying if a cure became available she would be first in the queue for it, such was her wish to live. But not at all costs: “It’s not a matter of wanting to end my life. It’s a matter of not wanting my life to be this.” Harrowing to see her emaciated frame, hear her reluctance, feel her fear – you can watch it here if you can bear to. I can’t begin to imagine what it must have been like for her relatives and friends, and indeed those caring for her, to watch her deteriorate in this horrible way. Nor the courage and determination on her part to stick to her resolve for that long.

Advocates of a change in the law have capitalised on this story, drawing attention to statistics which seem to point inexorably in their minds to change: 60-70% of the public want it; legal and ethical opinion has swung in favour of it; two terminally ill people a month go to Switzerland to end their lives; ten times that number kill themselves secretly at home; to name but a few figures. It’s only religious zealots and medical authoritarianism that are holding us back, they claim; surely the best tribute to this indomitable campaigner would be to legalise assisted dying.

I’ve stated my own opinion elsewhere on this blog; I won’t rehearse it again here. Suffice to say I have my own reservations, my own tentative solution. But the very fact that, in this 21st century, in our affluent and democratic country, after two decades of mental and physical agony, a young woman took a year to die from starvation, must surely give every one of us pause for thought. What’s your definition of torture?

If not an assisted dying bill, what? In a decent civilised society we cannot stand back and allow such scenarios to be reenacted.

 

 

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A short stay in Switzerland

Panoramic trainD’you remember the BBC film of this name, A Short Stay in Switzerland, a dramatisation of the last days of Dr Anne Turner who developed an incurable degenerative disorder (PSP)? She made the front pages of the papers with her letters to friends and relations to say, ‘By the time you read this I will be dead‘. In January 2006 she travelled to Dignitas to end her life, the day before her 67th birthday, while she was still able to move and voluntarily take the lethal medication. And a report this week says that almost a quarter of terminally ill people who avail themselves of the suicide clinic’s services are from Britain (second only to Germany).

MatterhornWell, I’m grateful to be able to report that my own short stay was of a quite different order. I had eight days to revel in the spectacular scenery, travel on the world famous panoramic trains, listen to the enchanting melody of cow bells in the mountains, and inhale the pure Swiss air, with no sinister intent. All I had to do was soak up the beauty and recharge the batteries. Wonderful.

I did my best not to let the Dignitas issue cast a shadow over my holiday, but of course, books featured. After all, this was real Heidi country, Johanna Spyri was born, lived and wrote in and around the rural area of Hirzel and Zurich, and used Graubünden for the setting of her books – all places I visited. Although Spyri struggled to find a publisher initially, the two Heidi stories went on to become by far the most popular works of Swiss literature: they’ve been translated from German into 50 languages, filmed more than a dozen times, and over 50 million copies have been sold world wide. Swiss pasturesSo evocative were they of the Swiss Alps that the real locations exactly conformed to my childhood mental images.Swiss cows

Switzerland is also the stuff of the Chalet School series by Elinor M Brent-Dyer, another big part of my growing up. Stories of schoolgirls who spoke three languages fluently, whose lives were overshadowed by the sanitorium, and who seemed to grow up to have lots of children also destined for the Chalet School.  Old hardback Chalet School booksI collected most of the hardbacks (secondhand) in my youth, and passed them on to my daughter, who recently completed the set (58 books), paying a good deal more for rare copies than I ever did! Paperback Chalet School booksThe full complement are destined for the next generation. What a lovely legacy. I might even read them again myself some time – this time in the correct order! – and fill in all the gaps.

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To die or not to die – that is the question

Yes, it’s reared its head again as another new year gets underway. The perennial dilemma. Assisted dying: should we? shouldn’t we? [Cue king-sized sigh.]

Right to DieWay back when I was writing Right to Die, (2005-2007 ish), Lord Joffe was working tirelessly and meticulously to get his Assisted Dying for the Terminally Ill Bill through parliament. I followed its progress closely, I met with the man himself, and I confidently expected him to succeed. But no,  the House of Lords blocked it. Too hot to handle.

Then two years ago MSP Margo Macdonald waged her passionate campaign to get assisted dying accepted in Scotland. I watched her in action, I listened to her in the flesh, and I honestly thought her End of Life Assistance (Scotland) Bill would get somewhere, given the publicity she generated and her own personal struggle with Parkinson’s Disease. But no. I was wrong again. It was thrown out.

Now this month Lord Falconer has published his report on behalf of the Independent Commission on Assisted Dying (set up and partly funded by Sir Terry Pratchett). The story is similar. They recognised the distressing situations people find themselves in under the present system, the anxiety it causes healthcare providers, and the challenging burden it represents for the police and prosecutors, and found the present law both ‘inadequate‘ and ‘incoherent‘. They looked for a solution for people with the mental capacity to request assistance and a clear sustained wish to die.

Once again practices in other countries that permit varying levels of assisted death came under scrutiny. The Commission ‘did not like much of what they saw.‘ In Switzerland, the Dignitas clinic is an alien environment where patients are far away from loved ones. In Oregon, patients must take 90 pills, often without a doctor present. In the Netherlands, even teenagers and people with mental illness are helped to die. The Commission deemed all these practices undesirable for Britons.

But in any case,  irrespective of the efficacy of practices elsewhere, in reality the opportunity to go abroad for death is really only available to the wealthy. Furthermore, because of the threat of legal action against relatives  who assist them, many are forced to take their own lives early while they are still physically able to do so. So, nothing new; but the painful truths revisited and reiterated.

Like their predecessors, the Commission came to the conclusion that a change is overdue. GPs should be able to prescribe lethal doses of medication for dying people to take themselves, they said.

Lord Falconer’s recommendations though, are much narrower that Margo Macdonald’s. They would only apply to people with less than a year to live, who are capable of drinking the medication unaided.  They do not include those who are suffering unbearably but for whom death is not imminent. Neither Margo herself, nor the redoubtable right-to-die campaigner Debbie Purdy who has MS, would qualify. After all they’ve done to open up the debate and clarify the law! A retrograde step surely, not to cater for the people in greatest need of help. Because in reality, terminally ill patients close to death are often helped subtly and carefully and lovingly to have a good death. It’s the ones with lingering declines because of conditions that rob them of power and control and dignity inch by degrading inch that we need to worry about most.

In fairness, this latest august committee conceded that there are dangers in what they recommend and extreme caution is needed. Pressure might be exerted on vulnerable people to end their lives – either from within themselves or from family members. Hence, in their scheme of things, disabled people, or those with depression or dementia, would be ineligible for assistance.

Or maybe they felt that a staged approach is advisable. Start small. Test the water. It’s conceivable. But could backfire.

The next step would be to discuss their report in parliament. But it will inevitably face stiff opposition. Politicians have proved themselves reluctant to back this particular hot potato. Vocal religious leaders are against the taking of life – full stop, and few politicians will risk alienating them.  And many in the medical profession are reluctant to publicly support something which appears to fly in the face of their avowed duty and intent to save life and do no harm, although, if you read the evidence to the Commission you’ll see that a considerable number of eminent doctors do privately support a change in the law.

Nevertheless the report places much of the burden for implementing change on doctors. They are the ones who must screen eligible patients, tell them about possible alternative treatments, deliver the lethal prescription, be present during the final moments, cooperate with the police, and report to a monitoring service. Burdensome indeed. Especially if you have personal reservations. And many doctors fear that allying themselves with such a death service would compromise their relationship with their other patients.

But identifying any category of person to take this role presents me with my personal biggest dilemma. It’s easy enough for those who aren’t medically trained to insist, ‘Oh yes, somebody should help these people to die.’ But would they be prepared to administer that fatal dose? To live with the knowledge that their action had killed a fellow human being? Me, I feel sick if I accidentally step on a snail! I couldn’t even finish off an almost-dead rabbit left behind by a hit-and-run driver. Squeamishness personified, me. Who am I to say, ‘Yes, we need this change, but you do it, not me’ ? That’s where all my carefully worked through logical reasoning breaks down.

This time I haven’t spoken to Lord Falconer in person, but if I had to declare my opinion as to the future of this latest attempt to offer assistance with dying in the circumstances outlined, I would rate it unlikely to succeed. Especially given the accusations flying around of bias and prejudice in this particular committee. And the problem of knowing who has less than a year to live. And the expertise required to assess people with a terminal illness for anxiety and depression – could GPs do it? And the time necessary to establish a sustained and genuine wish for death.

However, talking about these controversial and emotive issues that involve unbearable suffering and mental anguish, has to be better than sweeping them under the carpet. So if it keeps the issues alive it will have served a function. And in the meantime, let’s just hope and pray that those who need it get excellent palliative care from staff who support the concept of a pain-free dignified death.

Curious really, Right to Die came out in 2008 but is just as topical in 2012. The reverse of what I expected when I wrote it.

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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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