Hazel McHaffie

Right to Die

Conversations on Dying

‘And that’s the reality of all human lives when it comes down to it, isn’t it? That we choose the narrative we write with our lives every day. By the decisions we make, by the ways we chose to spend our days, we craft the lives we live in, our story.’

Dr Larry Librach lived a rich life, told an impressive story.

‘If you had to imagine an archetypal favourite uncle, you’d probably come up with someone like Larry. His eyes crinkle because a smile is his face’s default setting. His trademark moustache, which has been grey since I first knew him, is always neatly groomed, but it’s constantly being worked – curling upward at each end, He still has a full head of hair, despite his sixty-six years, and it always gives the impression that it’s on the cusp of being unruly – that it might any second explode into an Eisteinian mop.’

Dr Librach? … Who? … He was a palliative care physician in North America, co-founder and director of the Temmy Latner Centre for Palliative Care, one of the largest such centres in the world. He dedicated his working years, his distinguished career, to helping his patients navigate their final journeys, to teaching others to truly understand and provide empathy, sensitivity and real support. He readily agreed to assist journalist and writer, Phil Dwyer; to be interviewed, to be shadowed as he went about his work caring for dying patients in the community. Here was an opportunity to teach a far wider circle of people than those in his immediate circle of students and colleagues. To improve care everywhere.

It was a body blow to Dwyer when he learned that Larry himself had been diagnosed with terminal pancreatic cancer. But such was the generosity of the doctor (and his wife) that Larry continued the interviews, now sharing his own personal experience of dying at every stage, to give an even more intimate insight into what it feels like to walk this painful path. One more teaching opportunity – perhaps the most powerful. One more chance to tell those who would come after him – patient, relative, friend, physician – what helps, what hurts, how care could be made better.

‘It wasn’t the cancer that crafted Larry’s narrative, but the choices he made after he knew about it. Larry chose to die, as he had lived, with purpose. It was only that, only his intent, that gave his death meaning. But it was enough. More than enough.’

Conversations on Dying is the book that came out of this joint venture. It’s a beautifully hopeful, energised story of love and commitment, of family and friendship, and a seemingly bottomless well of compassion. Larry somehow manages to combine an honest appraisal of the emotion and pain of his situation, with a rather unnervingly detached scientific perspective and analysis, even when things seem bleak and overwhelming.

Phil Dwyer too is impressive. His intimate connection with his co-worker is plain to see, his own grief and pain raw, and made all the more poignant because he is simultaneously reliving the death of his own elder brother three years before from throat cancer. He compares the two experiences, learning, understanding, mourning … and with new illumination comes new sorrow. But in spite of the personal cost he manages to write with elegance, wisdom and sensitivity, creating a narrative both moving and intensely readable.

No detail is too small, no nuance missed. His brother John had craved a Chelsea bun and a pint of beer; the mass in his throat prevented him ingesting either.

‘These are the things we lose. Everyday things. Things we’ve experienced thousands of times without pausing to savour them. These are the things that become important when they’re taken away from us.’

Phil (in Canada) and John (in the UK) were continents apart. He lived in dread of that  unexpected family phonecall from a foreign land, the terror, the immediate imaginings of death or disaster.

Mayhem lurks in that transatlantic static
‘… hollowness would open up as I lifted the handset’

And finally …

‘When she [his sister] did [speak] it was in a voice that had been washed clean of every bright note, a flat, emotionless tone from the country of the mourning. She couldn’t even say the words. All she could say was “it’s happened”.’

It might be supposed that Dr Librach’s own experience would be one of gold standard care. After all he was famous, it was he who taught his personal physicians how to care. But no, he too was subjected to thoughtlessness, insensitivity, even negligence at times. A receptionist chose to file her nails rather than give him thirty seconds of her time to supply a document he needed. Dr X completely fouled up Larry’s treatment for jaundice. But he faced the good, the bad and the ugly equally with courage and clear sightedness. He listed the deficiencies of current provision in his own discipline boldly and wisely:

  • Liaising between parts of the system is poor; appointments are not dovetailed, making impossible demands on dying people.
  • There’s too much centring on disease not on the person and family; insufficient true caring; not enough team spirit; too little respect for the patient’s time; too little empathy; ineffective information exchange; too little welcome.
  • The government is all about performance indicators; healthcare administrators are more into spreadsheets, too far from the bedside.
  • Not everyone with cancer needs to have treatment; quality of life as opposed to quantity is important. Chemotherapy can kill the elderly as well as cripple the health care system. Why try to save the dying at all costs? What for?

Ring any bells?

In the face of ‘the gut shreddingness of the emotions that tear into us at such a time’ there are certain key things that matter. Typically he gets to the very kernel of what counts in the end:

  • being respected and cared for as an individual
  • being heard
  • being free to ‘let it all hang out’, sharing the emotions, not bottling things up
  • keeping communication lines open
  • finding your own meaning and value in life

Simple things. Human, compassionate, loving things.

I’ve written and talked about the issues around dying myself for many many years (ad nauseam my family would say!); I’ve read countless books on the subject; I’ve even written a novel about assisted dying. But this one, Conversations on Dying, is unique in my experience. Its candid and energetic approach, the intimacy of the collaborators with each other and with death, their courage and generosity in allowing us to witness their raw emotion and vulnerability at close quarters, their clear summary of the issues that matter, offer us at once an enormous privilege and a lesson for life. I salute them both.

And thank you, Amanda, for recognising that this is my kind of reading, and for your generous gift of this special book. I shall treasure it.

(NB. You may like to know that radio broadcaster Eddie Mair has recently recorded a series of talks with journalist Steve Hewlett – who died a couple of weeks ago – about his experience of terminal oesophageal cancer. They cover similar ground.)
 

 

 

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Real life ethical challenges – alive and well

Wow! The year has begun with a bang as far as medical ethics is concerned. Lots to challenge us.

Just in one day this week we had the news that …

Every secondary school in England is to be offered training to help them identify and support children who are suffering from mental illness – a government-led initiative. Mrs May describes it as a first step in a plan to transform the way we deal with mental health in this country. There’s a long way to go but this is at least a concrete measure. Is it the right one, d’you think?

A terminally ill man with Motor Neurone Disease who fears becoming entombed in his own body has asked judges to allow doctors to prescribe a lethal dose of drugs for him without fear of prosecution. Sound familiar? Well, actually it’s the first case of its kind for 3 years would you believe – surprised me to learn that too. Should he be allowed this option? Is the UK ready for change? Where would it lead?

There’s been a rise in demand for live-in au pairs for elderly folk. It’s an attractive alternative for some to going into residential care. OK, I’m listening! And it comes amidst the controversies over standards in care homes and the soaring costs involved. But of course it comes at a price. And it inevitably excludes some people. Will it take off? Should it?

Viscount and Lady Weymouth have become the first members of the British aristocracy to have a baby carried and delivered by a surrogate mother. Apparently Emma Weymouth has a rare condition which puts her at high risk of having a stroke during labour; she suffered a brain haemorrhage and an endocrine disorder during her first pregnancy. This was deemed the safest way for them to ‘complete’ their family. But of course it has higher significance to an ancient lineage like the Longleat Bath family than to the average couple. Any thoughts?

After lengthy wrangling, judges have decided that a Gulf War veteran, policeman, and father of one, aged just 43, should be taken off life support and allowed to die, in line with his expressed wishes. His wife sees it as a final act of love. Others decry it as the thin end of the wedge to denying the sacredness of life. Where do you stand?

As I’ve said before, I shall never run out of material for my writing. And this ongoing interest in my subject spurs me on.

NEWSFLASH: Yesterday I completed the first draft of novel number 10. Wahey! Drum roll, please. It’s about a professor of Medical Ethics going on a train journey from Aberdeen to Penzance to deal with a crisis in her own family, but encountering all sorts of challenges along the way. The most fun of all my books to write so far, but I still cried at one point!

 

 

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Ethical issues for everyone

I’ve been taking stock of where I am in my writing career of late and I thought I’d share with you a couple of noteworthy things from this appraisal.

The first relates to the prevalence of my subject matter.

To one side of my desk I have three large boxes full of folders. Each file contains material related to topics I’m interested in; each one a potential novel. (Yep, you’ve got the picture. I’m obsessive. Nothing newsworthy there.) But some of these files are very thick; one topic even runs to two volumes. And reviewing the contents, I’m reminded of how often I cut things out of the daily papers to slip into the said folders. Deduction? My kind of subjects must help sell newspapers; ordinary people must be interested in them.

Alert to this, I did a mini survey. Result? Just on one day this week there was something on
– mental illness (OCD and depression and self harming all dealt with)
– organ transplantation (growing human organs inside other mammals)
– assisted suicide (the BMA’s position: should doctors to be free to follow their consciences?)
– body image and identity (eating disorders, celebrities’ experiences)
– balance of risks and benefits (related to heart disease)
– care of the elderly and those with dementia
All on just one day in one newspaper.

Right to DieThe second point relates to the currency of my subject matter.

When I start planning a new book, I do try to imagine life a bit ahead of present understanding so that when it comes out it’s still relevant and topical, but I’ve been surprised at how much these issues remain current. Take assisted dying, for instance. My novel, Right to Die, was published in 2008. In the eight years since then parliament has revisited the issue repeatedly; professional bodies have regularly debated the pros and cons; a considerable number of high profile cases have come to public attention; campaigns have been fought. It’s still a hot potato and it doesn’t show any sign of cooling any time soon.

Remember-RememberThen there’s dementia. Remember Remember came out in 2010, but the ethical dilemmas it explores are as thorny today as they were then. What’s more, the number of families grappling with them is growing as the human lifespan increases; more and more individuals are exercised by the questions.

I’ve been working on an outline for the tenth and eleventh books recently and I’m staggered by the thickness of the folders on those two topics. I’m having to write notes of notes, and lists of lists, to sort out the wealth of facts and the evolution of thinking and knowledge, in order to establish what arguments and counter-arguments obtain today, and to start developing a coherent plot-line. When I first set out on my pathway to becoming a novelist, a very highly regarded agent advised me to leave my academic background behind me. I knew what he meant: the meticulous research mustn’t show through in the finished product. However, from my point of view, those decades as an university researcher stand me in good stead when it comes to delving deep, sifting and sorting facts, and understanding science.

Of course, I’m well aware that at some point I shall have to put away my writing pen, my days as an author done. But it certainly won’t be because I’ve run out of subject matter! Medical ethics is very much alive and thriving.

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Pause for reflection

There’s nothing quite like a spot of immobility to challenge one’s priorities. So much of who we are is wrapped up in what we do. If we can’t do, what then?

A rather nasty early morning fall on black ice (who ever suggested pre-breakfast power walking was good for people of my age in winter time?!) and the equivalent of whiplash injury in my lower spine, have curtailed my movements rather too effectively. Please don’t misunderstand me – this is no cry for sympathy; I’ve no one but myself to blame. No one forced me. But the effect is that I’ve been doing rather too much thinking for my own mental well being. (Well, truth be told, I was always pretty borderline.)

Regardless of the accident, March was always going to be a weird time, a kind of cold turkey, waiting for the latest novel to come off the production line. No more tweaking. No more proof reading. What is, is. And most ‘next-jobs’ can’t begin until the book is actually available – next week!

It’s surprisingly hard to concentrate when you’re in constant pain – or maybe I’m just a terrible wimp. And everything feels cack-handed. Imagine said author draped over an ironing board to write, read, eat, and you have a glimmering of the scenario chez moi. Just not being able to sit down becomes remarkably wearisome. Life gets reduced to essentials.

Unfortunately ‘essentials’ includes a lot of travel right now – Ireland, Cornwall, Midlands, London, all within the space of three weeks. ‘Keep getting out of the vehicle and walking around‘, advises my expert osteopath. ‘Try reclining the seat and lying on your side.‘ Hmm. I guess it depends on the vehicle, and who’s driving, and how soon you want to get there.

Right to DieSo, reflections it is then.

The trip to Galway in Ireland was for an event about dying – both natural and assisted. I was invited on the strength of my novel, Right to Die, and my background in ethics. Eire is working on a parliamentary bill on this subject right now so it’s a hot topic over there; it was an honour to be included. And I felt heartened. After eight years in print my little book is still borrowed from libraries large and small, and the topic is still relevant and controversial,. All very encouraging.

Question is, encouraging enough to keep doing what I do? Hmm. Let’s see.

Things about my work I love and want to retain in my life:
Reading
Writing
Blogging
Editing and revising
Talking about my books/pet subjects
Entering into the debate
Exploring new topics
Good reviews
Hearing from satisfied readers

Things I’m less keen on:
Promotion
Marketing
Tax returns!

Inside of Me coverAhh. The tally says it all. I might revisit this once Inside of Me is on the shelves and my back restored. Who knows, I might even  reinvent myself and go for those four inch crimson stilettos!

 

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Peeling back the gilt of Christmas

Nativity carouselAt this time of year it somehow seems extra tragic when bad things happen to good people. Aside from the global crises afflicting our world and unravelling before our eyes in our living rooms, I personally have a number of friends currently facing serious illness, impending death, sudden bereavement, and yet it must seem like everyone around them is caught up in trivia and pleasure, festivities and excess – in reality of course, who knows how many others are only hiding stresses and problems from public consumption?

Mrs Santa straw figureIt’s in this spirit that my mind has been wandering over the huge dilemmas facing different families; what would I choose in their circumstances? how would I cope?

Metropolitan police officer Heidi Loughlin, 33, discovered she had an aggressive form of breast cancer the day after finding out she was pregnant with her third child. She decided not to have a termination of the pregnancy but to delay treatment until after the birth. Her condition became so serious however that her baby girl was delivered by Caesarean Section on Friday, 12 weeks early, and Heidi has been given a short time to recover from the operation before starting powerful chemotherapy next week. She faces a pretty gruelling Christmas, but is determinedly looking forward to March when she will get her baby girl home to her two brothers. She has risked her life to give her daughter a chance and says she has no regrets; it was all worth it. What would I have chosen in this situation, I wonder? What would you?

Then there’s fireman Patrick Hardison. He entered a burning house in Mississippi; the roof collapsed on him leaving him with severely disfiguring burns across his face, head, neck and upper torso. Think for a moment of the pain of a small burn from an oven shelf, a hot iron … Multiply that by ten trillion. Even after 70 operations he was still so terribly mutilated (see pictures here if you can cope with them) that he would only go out heavily disguised. What kind of Christmases has he endured, I wonder? He recently underwent the most extensive face transplant ever performed. Factor in not only the excruciating pain at every stage but the risks … would I have been courageous enough to want to go on living? Would you?Antique Santa candle holder

Within the last two months, two transgender women have been found dead in their cells in all-male prisons: 21 year old Vikki Thompson in November, and 38 year old Joanne Latham in December. No more Christmases for them. Many difficult questions present themselves where transgender people are concerned and there is generally much greater sensitivity to their issues, but what about when they commit crimes, serious offences that land them in prison? Not only their own welfare is at stake but that of their fellow prisoners. Where would you have housed these two? Nearly 150,000 people signed a petition to house a third person, 26 year old Tara Hudson, in a female institution even though she had been convicted of assault. Would you have signed it?

A 50 year old woman, mother of three, is so determined not to grow old and ‘lose her sparkle’ that she has refused to undergo kidney dialysis. Her kidneys were seriously damaged when she took an overdose following a diagnosis of breast cancer. For years her life style has been chaotic to say the least, and one wonders, what is Christmas like in that household? Whatever, the Hospital Trust responsible for her care appealed to the courts to have treatment imposed against her wishes. But a senior judge has upheld her right to an autonomous choice to die. Was he right to do so, do you think?

I’m merely scratching the surface by way of illustration. Remember all the cases we’ve heard about recently – various scandals around abortions carried out on the grounds of gender alone; teenagers killing themselves because they’re obsessed with losing weight; all the dire warnings about how to deal with declining fertility; the consequences of a simple blood test at 18 weeks pregnancy that allows screening for thousands of genetic conditions  … the list goes on and on. My files are bulging with clippings and articles.

Scandinavian figuresSo at this time of celebration and joy, let’s spare a thought for families caught up in tragic circumstances, and the courageous souls who try to support and guide them. May they find wisdom, courage and strength. And I wish all visitors to this blog peace as you prepare for the festive season whatever it means to you.

 

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Cursed inheritance

As I promised last week, good news this time!

Eight or nine years ago I chose Motor Neurone Disease for the degenerative condition journalist Adam O’Neill is battling with in my novel, Right to Die; Right to Diea disease that will strike right at the heart of his being and his aspirations. So I was fascinated to find Lisa Genova chose Huntington’s Disease for her tough Boston cop Joe O’Brien in Inside the O’Briens, a disease that stops his career dead in its tracks and forces him to face the horrors of genetic inheritance.

Both MND and HD are frightening, crippling, fatal conditions that rob the person of control and dignity. Getting inside the mind and body of either an Adam or a Joe is very scary stuff. So, having been there myself, I was extra curious to see how someone else tackled the ethical minefields and personal challenges associated with such a scenario; especially someone with Genova’s credentials.

This time she has inserted occasional tracts of medical explanation about the condition into her novel to inform the reader, positioning herself as a scientist; but for me her real strength lies in her ability to describe the illness from the inside. She puts the humanity into the science, compassion into the clinical facts. The insidious onset before policeman Joe even suspects the truth. The sudden weird and inexplicable bursts of anger. An inability to process instructions. Finding it impossible to keep legs and feet still on parade … in police exercises … in a restaurant. And then, once he’s diagnosed, the inexorable progression. The involuntary indiscriminate throws – punches, food, cutting words – that label him as drunk, deranged or dangerous to passers by. The red rages that cause his wife Rosie’s black eyes, terrible destruction in the walls of the family home. The fear that won’t let him ever hold his grandson. The depression that makes him constantly check his gun is still loaded and primed.

We peer into his past when Joe recalls his mother’s antsy wild black eyes as she lay in a mental institution for years; condemned to be known as an incurable drunk. The questions hitting him now nearly forty years later. How could she have remained an alcoholic in the hospital all those years? Why had his father stopped taking Joe and his sister to visit her? Why had his strong dad wept like a baby? What lessons did she actually teach him?

The author powerfully captures the brutal reality through the eyes of the rest of the family too:

Inside the O'Briens‘Huntington’s isn’t the absence of moving, thinking, and feeling. This disease is not a transcendental state of bliss. It’s a complete freak show – ugly, constant, unproductive movements, uncontrollable rage, unpredictable paranoia, obsessive thinking.’

We see the dawning terror in his wife’s eyes. Her silences. Her withdrawals. Her desperate stroking of the crucifix round her neck, the beads of her rosary. Her binning of the symbols of her ingrained Catholic faith.

Then there’s the terrible implications for their four beloved offspring. Vegan yoga teacher, Katie, living life in ‘peace, health and harmony’. Ballerina Meghan, limbs and body and mind all supple, beautiful, desirable. Firefighter JJ, taking his health and fitness for granted, using it to save others; preparing for imminent parenthood with his wife Colleen. Rebel Patrick, sewing his wild oats liberally, experimenting with life. Each one of them carrying a fifty percent chance of harbouring this cursed disease. Nothing can change that fact. Nothing can halt, slow or reverse this terrible thing. Joe, their father, is powerless to protect them. Indeed it was he, their supposed protector, who handed on the poisoned chalice in the first place. And now he must stand on the sidelines and watch them all battling with the impact of their cruel inheritance. Only they individually can decide whether to take the test, if they want to know the truth lurking unseen in their own DNA. JJ and Colleen may not even choose on behalf of their baby son.

How should Joe deal with his burdens? Is there a way out? Should he take it? How can he best support his children? Should the youngsters go for testing? What are the implications if they do/don’t? Would I want to know?

I love books that are at once a gripping read and challenge me to think deeply – especially in the field of medical ethics. And even though I’ve been into these questions already myself as an author, I thought this book was brilliant and awarded it five stars. Beautifully written, compassionate, perceptive, engrossing, provocative. Genova at the top of her game again. Seems I prefer her as neuroscientist-turned-novelist rather than simply novelist. That could well be something to do with my own position on the spectrum; nevertheless the experience of reading Love Anthony and Inside the O’Briens one after the other, has taught me something of value for my writing too.

So, Genova has already tackled Alzheimer’s, Left Neglect, autism and Huntington’s. What next? MND, she says – or as she calls it ALS. Ahah! I await that novel with bated breath!

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Arts, crafts and literature

August. Hard to believe but it’s Festival time in Edinburgh yet again.  Other commitments and limited time are forcing me to divide my allegiance roughly into three divisions: this week – arts and crafts; next week – drama; the following week – literature.

Wooden penSo this week I’ve visited exhibitions and craft fairs, and as ever been hugely impressed by the skilled hands and eyes which create fabulous works of art of so many types.  I couldn’t resist this beautifully turned wooden pen which is destined to become my signing-books tool from hereon in.

It seemed fitting then, in snatched odd moments, to read The Iceberg: a true-life memoir of an artistic family by Marion Coutts which I bought soon after it came out last year … an author for whom ‘August from its first to its last day has been like this, a designated disaster zone, dates crossed out on the calendar like grazes or scars and dotted with emergency notes scribbled in pen.

At the heart of the book, its context, its object and its subject, is art critic and bibliophile, Tom Lubbock. Buying books is his habit; reading them is his work and life. His house is stacked high with them. He can go with practised ease to any title, any quote. His living depends on speaking and writing. How cruel then that he should develop a grade four tumour in the area of the brain controlling speech and language, which will gradually but inexorably rob him of the ability to communicate verbally.

The IcebergVisual artist wife, Marion Coutts, on the other hand, finds she is unable to read since learning that her husband is terminally ill. Words have become irrelevant except insofar as Tom needs them. If he is searching she will find and feed the words back to him until they reach a perfect understanding. In time she becomes Tom’s mouth, although without his brain she feels something of a fraud.

Son, Ev, is a toddler, absorbing language and coordination; learning to understand the world at breathtaking speed. The accelerating forces in his life are a counterweight to the deterioration in his father’s condition. ‘Both are engaged in a work of beyond-the-brink resourcefulness, an improvisatory balancing act, an enforced making up as they go along.’

The family as a unit are also feeling their way in uncharted territory. ‘Tom’s is a high-speed disease with full, motorway pile-up repercussions. It does not pause to allow you to admire the view from anywhere, How many times do I think, Now we really are in trouble?’ And each time the family look back at all the preceding occasions when they’ve said exactly that and realise they seem manageable and benign in retrospect compared with the present calamity.

Marion charts Tom’s decline and her reactions and Ev’s development with an unvarnished and unflinching honesty. Short staccato sentences somehow capture the moments of panic, the heart-stopping dread, the breathless anticipation of what’s coming. Descriptions devoid of self-pity make the enormity all the more raw.

‘In the giant city State of the hospital, new doctors take up their posts in early August and the convulsion of their arrival continues until the end of the month when gone-away staff return from the beaches and rocks of France and Croatia to face the great wave of September’s fresh sick and maimed. Emails go unanswered, messages do not get passed on, dates for procedures come and go, Post-it notes go missing and questions float wistfully in the air. Meanwhile we, outside the institution, outside of everything, are well under way on our own steam. We howl along, all three of us together, with knocks and shocks and sudden up-speedings round curves skewed tight enough to spill us right out, and our bones and skin are broken and torn but there is always more bones and skin to be mangled. Like a miraculous Catholic bloody endurance sport, there is always more. In the space of three weeks, between us we have had hospital stays, fits, diarrhoea, speech loss, tonsillitis, swollen feet, mobility loss, demoralisation, ambulances, glue ear and holidays – everything happens always and forever, on holiday. But we are not tourists. We travel tightly baggaged with our lives. There is nothing left at home.’

Her very writing style, confident and semi-detached and analytical, sets her apart as in control; but the half-buried casual confessions reveal her vulnerability. As she finds: ‘The weak are held close and given tea. They are hugged and warmed by the fire. The strong are revered but kept at a distance.’

Published last year, The Iceberg has been shortlisted for three major literary prizes and longlisted for another one. Wow! Tom, familiar with the literary world, would have been proud of his wife’s achievement. I, for my part, found some aspects of the book irritating, some bewildering, but in many other ways it echoed my own account of a slow death in Right to Die; a kind of real-life authentication of my fiction.

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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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Reflections from the sofa

It’s all very well to theorise about how we would act in certain circumstances from a safe distance, but real life in all its chaos can feel very different from the calm scenarios of our speculations. And in that context I’ve experienced some very sobering realisations this past few weeks in relation to medical ethics. Don’t get me wrong, I’m not feeling maudlin or morbid; rather I have an unusual amount of quiet time on my hands to reflect at the moment. So I thought I’d share some of my reflections with you to illustrate my initial statement.

There’s a lot to be said for simply accepting whatever life throws at you and dealing with it as it happens. It also saves a lot of angst if you just go along with whatever doctors say, take whatever treatment they advise, leave all the thinking to other people. But I’ve spent decades pondering ethical questions and challenging received wisdom, and my brain is now hard-wired to do so. So, let me illustrate where I’ve been going with this.

QuestioningMy own mortality has been brought into sharp relief since my heart started doing crazy things and I’ve been in and out of hospitals and GP surgeries. Lying on the floor waiting for the next heartbeat, watching a monitor recording 200 beats a minute, feeling the world receding, concentrates the mind wonderfully.

I’ve been working in the field of medical ethics for decades so not surprisingly I’ve given due attention to my end-of-life wishes. My ideal? To die with dignity, free from suffering, in full possession of my mental faculties. Nothing unique there, then. If things go pear-shaped, I’d rather not prolong a life of disability, lack of cognitive function, or suffering. Fair enough. Given that I’m entirely reliant on medicine to stay alive, I even have the wherewithal at my disposal to effect my own death should I wish to, without breaking any laws or implicating anyone else, or indeed doing anything other than refusing treatment.

I’ve duly prepared myself and others: I’ve thought (ad nauseam) about my own tolerances and limits. I’ve written an advanced directive – and even acquired a medical signature for it. I’ve had the conversation (many) with my nearest and dearest. All textbook stuff so far.

But real life is full of fine lines and unknowns which make actually carrying out those clear wishes problematic. I won’t bore you with a comprehensive treatise on how far short of the textbook reality falls in my own case; merely give a couple of examples by way of illustration.

I have options. I could simply ignore all my current symptoms of dizziness, nausea, blackouts, arrhythmia, get into the car and drive. I could keep doing strenuous things until my heart just gives up. Either, in my judgement, would be totally irresponsible. And my family and friends and doctors and lawyers would certainly have plenty to say – legitimately – about such a reaction. No, I have little choice at this moment but to listen to my body and accept that all is not well, and I believe I have a moral duty to take certain actions in recognition of that.

My heart is not maintaining a steady rhythm. One of the consequences of this is that I’m currently at greatly increased risk of a stroke. But nobody knows how bad such a stroke might/will be. If I suddenly had one, would I want to be resuscitated or treated? Well, it would depend on how severe the consequences of the stroke would be, and nobody could predict that at the time of the stroke. By the time anyone does know, the decision to treat has already been made … hmmmm. And it could be that by then I’m no longer mentally competent to make a decision for myself … ahhhh. How quickly and easily events spiral out of control.

At the moment we don’t know what’s causing the problems; I’m scheduled for more tests. Once we have a better idea of the underlying diagnosis, other questions will surface. They’re contingent on the facts: cause, statistics, outcomes, possible treatments, side-effects, risks-benefits ratios, etc etc. My medical team can supply the information, but I’m the one who must assess what I want. No one can force me to have treatment against my wishes. But my tolerances, my wishes, might not square with those of my medical advisers who have their own professional and personal standards and ethics, although it has to be noted, the consequences of what they do to me will not be borne by them. My assessments might not match those of my family who could be left to cope with my disability or death or worse. For their sakes I might feel an obligation to choose something different from what I might wish for myself alone.

See what I mean? We might think we have it all buttoned up, but life is unpredictable and no man is an island.

Right to DieI’ve seen up close and personal the effect of heart problems like mine – both instant death from a heart attack (my father), and the slow decline of repeated strokes, vascular dementia, prolonged total dependency (my mother) – so I’m not naive. I know what I would choose for myself; my family do too, but it’s not at all clear to me at the moment that I shall actually be able to put my wishes into effect. I rehearsed these dilemmas with Adam O’Neill when I walked alongside him as he died from Motor Neurone Disease six or seven years ago. I’m rehearsing them again now in real life for myself. It’s an interesting occupation.

 

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Assisted life or assisted death, that is the question

Dr Ann McPherson was a committed and energetic GP who made a mark in many spheres of her life. But she felt burdened by her powerlessness to help those of her patients who were terminally ill and suffering beyond their endurance. As a consequence she became an ardent campaigner for a change in the law. When she herself developed pancreatic cancer she knew all too well what lay ahead, but in spite of her own troubles she continued her crusade for as long as her strength allowed. When the disease overwhelmed her, she was forced to endure a horrible death – exactly the kind of end she wanted to spare others from.

Her daughter has courageously shared her story in the BMJ this month, and I found it a most eloquent and persuasive one. She spares few details is recounting the horror. This was indeed the kind of distressing death we would all dread.

Photo courtesy of Photolia

Photo courtesy of Photolia

In the same journal at the beginning of July, an editorial called for doctors to stop opposing assisted dying, and rather adopt a position of ‘studied neutrality’ – not apathy, please note, but neutrality – to accommodate the many different points of view doctors hold. The papers include emotional appeals to society to embrace the old and the disabled instead of thinking of killing them; to value choice as an inherent right; to start properly talking about death …

Ultimately however, this is a matter for parliament not doctors, powerful though they may be, to decide. And indeed Lord Falconer’s Bill designed to open the way to a form of assisted suicide in Britain, had it’s first full parliamentary airing last Friday. The House of Lords was packed; over a hundred members queued up to speak; eloquent appeals were heard without interruption. News items, articles, columns, letters – you’d have to be an ostrich to have missed the subject over the last week or two.

So it’s probably not surprising that lots of people have asked me what I think about the subject. In my novels I work hard to give equal weight to all lines of reasoning and not to betray my own opinion. Right to DieNow, six years after the publication of Right to Die (my own book on this subject), it seems expedient to declare my hand. But first I should say that in spite of my close involvement in this area, I can still be persuaded by the strong arguments on both sides. Emotional firsthand stories still grab me by the throat. I am very far from black and white, I still swither. Indeed, as soon as I’ve posted this, I’m sure I shall read or hear something that will make me wonder all over again. I’d welcome any genuine comment which would point up errors in my thinking. Or indeed any other thoughts on this issue which would contribute to healthy, measured debate.

So, where do I stand? First I should state the problem as I see it: intractable pain and suffering, indignity and distress as features of dying or living with degenerative or totally incapacitating diseases. OK, I know the current Bill is addressing only terminal illness (within 6 months of death – a diagnosis that’s impossible to make with certainty, incidentally), but I want to gather in those who have longer-lasting problems too, who in my opinion, often have a stronger case for seeking a way out of their terrible situation. (I’m not operating under the same constraints as Lord Falconer and his cronies.)

I should hasten to reassure you at this point that I have no intention of rehearsing the arguments or regurgitating the emotive phrases wheeled out by both sides in relation to this current Bill; you’ll be as familiar with them (perhaps even wearied of them?) as I. Rather I want to propose a two stage process.

In the first instance, my appeal to parliamentarians would not be to change the law, but to re-allocate resources. What I’m going to say now may sound utopian, but it’s my view that everyone – absolutely everyone – suffering from a terminal or degenerative illness, should have full access to excellent palliative care of the highest order including, where appropriate, proper psychiatric involvement to eliminate treatable problems like depression or anxiety. At the moment this is very far from the case (even though Britain is recognised as a world leader in this field of medicine). Ask yourself: What kind of a society knowingly condemns some of its most vulnerable citizens to a form of torture, when an alternative is available? It seems to me iniquitous that even established successful hospices are reliant on public financial support to keep going. And that only a tiny fraction of patients who desperately need their services get them.

I would maintain that simply being comfortable and being listened to can change one’s whole perspective on life, no matter how short or long that life might be. So, if pain and distress are capable of amelioration, they should be treated swiftly and effectively. What a different scenario we would have from the outset if that were everyone’s right.

Once this first provision is made, there would be a much smaller number of people for whom life is a prospect worse than death: those for whom palliative care does not offer a solution. And I know only too well that not all pain, not all distressing symptoms, can be relieved: it’s naive to think they can. I would keep these remaining cases well away from media scrutiny (with its attendant risks of vitriol and vilification for those at the heart of these situations). Instead I would propose a system whereby cases could be brought to a kind of Ombuds-committee made up of representatives from the main relevant disciplines who could, with compassion, empathy and experience, in private, help all concerned come to a conclusion which would be the optimal one in these circumstances. And to do so with all speed.

The necessity to go through this process would, it seems to me, go some way towards protecting the vulnerable from vultures and undue pressure to act against their own best interests (one of the biggest worries with the Falconer Bill). And to facilitate this it would be hugely advantageous if Advanced Directives were to become the norm: people spelling out their beliefs and wishes clearly and rationally while they are in complete control mentally.

There would still, of course, need to be careful scrutiny of the legal limits and responsibilities. Doctors should not be required to take risks or actions which are against their consciences or without legal backing. Patients should not be obliged to spend their last days, weeks, months or years battling officialdom. Relatives should not be fearful of dire consequences. Adequate legal provision would have to be made. But in my view it is almost impossible for the blunderbuss that is the law to properly take account of the fine nuances involved in these cases on its own, and to create a catch-all law. Furthermore, at the moment I do not think the Falconer Bill is accurately addressing the real dilemma.

All the Bills drafted to date, all the tragic cases paraded for public scrutiny, all the  discussions linked with them, have forced society to address the issues, to look squarely at the problem. And indeed, surveys show that we as a nation are much more sympathetic to the realities faced by these families than we were a decade ago. Now though, we need a mature and measured response that fully takes account of the things we all dread, and moves us to change our ways. To recognise the importance of good palliative care – not only to value it but to put our money where our mouths are. To respond sympathetically to the urgent needs of those people for whom life even with optimal care is intolerable. For those with fierce intractable scruples to ask: what right have I to impose appalling suffering on others who do not share my personal view or scruples?

Shutterstock image

Shutterstock image

Hmmm. I’m feeling rather vulnerable myself stating my views so forthrightly.

What do YOU think?

 

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