Hazel McHaffie

Switzerland

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 The current laws (and lack of laws) around assisted dying in Scotland are cruel, outdated and discriminatory.’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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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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Book Festival

Like Joan Bakewell I say with some amazement that ‘Edinburgh’s jamboree will have to fizz without me‘ this year. Yep, for the first time for donkey’s years I have no tickets for the International Book Festival. Nary a one.

Why? Well, various other responsibilities and commitments have swallowed up these two weeks and I simply can’t spread myself any more thinly. I am, of course, a tiny tad disappointed to be missing the excitement of the tented domes of Charlotte Square, and listening to fellow-authors telling of their inner lives and exploits. Oh yes, and those interesting conversations that crop up every year as we wait in queues or compare notes over a coffee. But I confess I’m also aware of a smidgeon of relief that I’m not up writing reviews at all hours for this or anyone else’s blog.

However, I have been festivalling. Yes sir! I’ve taken to the Festival Fringe – the unregulated unofficial part of the programme – big time, in the delightful company of my appreciative guests. For those of you who aren’t aficionados, the Fringe sells over 2 million tickets and attracts over 3000 acts and events; it’s been described as the world’s largest arts festival … and it’s on my doorstep!

On the way between shows, we’ve been taking leisurely strolls through the Old Town, and the craft stalls of the West End … Craft Fair

… pausing to enjoy the street theatre, (even in the teeth of hurricane Bertha one decidedly damp afternoon!).

Levitating alien

Headless man

And wow! were we lucky with our choice of events. Every single one we went to was well worth seeing (it’s a hit and miss experience normally). Particularly impressive were the Saltmine Company‘s production of John Newton – Amazing Grace (relating the story of the slave-trader cum hymn writer through music and drama); and a dramatic telling of Michael Morpurgo‘s 16 year old Private Peaceful looking back at his life on the night before his execution by firing squad. We were all spell-bound.

Both these events were well attended, but some of the others had tiny audiences and yet were excellent performances. Imagine baring your soul about a suicide or depression or loss or hopelessness to an audience of one for a whole hour! But they grit their teeth and do it. I wish them all huge success. After all, that lone listener might just be a top agent or critic. Many a famous name has been discovered in the Fringe.

NB. You may be reading about Edinburgh at Festival time, but I’m actually currently soaking up the incredibly beautiful scenery and pure air of Switzerland … of which more on my return.

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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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