Right to Die
Timing
It’s five years now since my novel Right to Die was published. In the run up to publication day I fretted when news stories related to this issue appeared. Would they steal my thunder and make it look as if I was jumping on someone else’s bandwagon?
How absurd. Here we are in 2013 and the subject continues to grab the attention of reporters and the public. Only this week the case of Paul Lamb, a 57-year-old man who’s been paralysed for the past 23 years after a road accident, hit the headlines. He’s taken up the campaign (initiated by Tony Nicklinson and discussed here) to legalise assisted death. He too is unable to do the act himself but wants any doctor who helps him to be immune from prosecution.This issue isn’t going away any time soon and Right to Die is as relevant today as it was in 2008.
Whenever and wherever one contemplates slow deterioration and indignity, pain and suffering, the prospect is horrific. It doesn’t take much imagination to see why a swift end to it all might seem preferable. How to live through the process and achieve a good death is the question.
But speaking of death, I was hugely impressed by best selling novelist Iain Banks‘ recent wry announcement about his own impending demise. As he stated on his website: ‘I am officially Very Poorly.’ He is. He has inoperable gall bladder cancer with numerous secondaries and doesn’t expect to live beyond a few months. His current novel will be his last and his publishers are rushing it through to give him a sporting chance of seeing it hit the shelves. He adds with the sort of ghoulish humour which is helping him deal with this tough situation, ‘I’ve asked my partner Adele if she will do me the honour of becoming my widow.’ The style and language of a brave man and a truly accomplished writer.
My own mark will be infinitessimal compared with his but I still worry about the impact of my books and the timing of their publication: the subjects I deal with do have their moment in the headlights. I couldn’t believe it when last week the press picked up on the fact that organ donation rates had risen significantly. and splashed it everywhere in capital letters. And blow me, the topic even came up in fiction in BBC1′s medical drama Holby City, with the death of a young doctor during brain surgery. She’d requested her organs be used and there was a dispute in the family. Hey, that should all have come after Over My Dead Body was published, not while it’s in the starting blocks!
But supply is still falling way below demand when it comes to human organs so all is not lost yet. Indeed, I doubt it will ever be too late to publish a book about transplantation in my life time.
The price of empathy
Elizabeth Jane Howard, author of the novels based on her own family history that became known as 
The Cazalet Chronicle, (recently serialised on Radio 4) has said that ‘You cannot be a good writer without empathy.‘ Too right, I thought. You have to enter the lives and hearts of your characters, to understand how they tick, how they react, in order to create believable three dimensional people. Fair comment.
I’d go further and say that in my experience, involvement with your own fictional characters means you pay quite a hefty price as their creator. You feel their pain. You struggle with them. You grieve with them. They keep you awake at night.
This phenomenon was at its most acute for me when I was writing Right to Die, the story of a young man who develops Motor Neurone Disease. It so happened that several members of my family were quite seriously ill at the time – indeed one of them actually died in reality on the day I ended the life of my main protagonist. Traumatic in more ways than one. I was a wrung out rag for ages after completion of the book.
Then there was Double Trouble (a tale of one family’s attempts to overcome infertility). Not only I, but a number of readers have been seriously upset by the violence done to the main character in that. One of my colleagues in the Institute of Medical Ethics said he couldn’t talk to me about it for a week; he had to recover first. I really really didn’t want it to happen myself, but it did. I was there. I was simply recording what took place in that bedroom. I was distressed twice over: both witnessing it and again describing it.
Oh, and I still shed a tear at the end of Saving Sebastian 
when Sebastian’s mother appears at a medical conference to tell her story and reveals an unexpected twist in the tale. It’s my happiest book to date, I’ve read it countless times, and I know what happens, yet it still tugs at my heart strings.
But in a way I see this as some kind of a barometer. If I don’t care about these characters how can I expect other people to? After all, I conceived them, nurtured them through the gestatory period, and gave birth to them. I tracked their thoughts and actions intimately. So of course I empathise with their agony – perhaps even more than their ecstacy. I was there at their end too, so naturally I stand at their graves and weep …
… except that … I must confess …
Oh dear, I’ve remained dry eyed throughout the writing of Over my Dead Body. Hmm. Should I be worried? Should I even share such a revelation?
This latest novel has the usual quota of tragedy, moral dilemmas, and heartbreak. It’s about a troubled woman, Carole, who loses her daughter and granddaughter in a car crash. It includes harrowing decisions about whether or not to use their organs. It reveals tense relationships, sibling rivalries, haunting secrets. We also peep into the lives of those struggling with life-limiting conditions who might or might not be saved as a consequence of Carole’s choices. In fact, the characters were initially so burdened emotionally that a number of my early reviewers and critics strongly suggested – even begged me to tone down the problems. One said she felt ‘coshed’; two said they cried throughout; others said they felt drained. So I did.
But me? Ahhhhh, therein lies the issue. I’ve lain awake listening to Carole and Guy and Oliver and Sarah and all the others. I’ve worried – agonized even – with them, I’ve woken stressed by their quandaries, but no, I haven’t cried with them.
So … am I getting hard in my old age? Am I inured to tragedy? Or am I unmoved by these particular characters? If so, that blows my empathy theory right out of the water. Help!
Are the characters one dimensional? Or wooden? Or unsympathetic? Are the situations and dialogue implausible? Well, I’ve had more than the usual amount of positive feedback for this book: so I’m pretty confident that readers do care and they do weep.
So it’s me then. I can assure you, Ms Howard, I do empathise with my characters. I do. I DO! I must then modify my declaration: it is not necessary for the author to be reduced to tears. Is that OK with you?
PS. For your eyes only … until the final manuscript goes for publication I shall continue my vigilance and analysis … and keep worrying!
A lamb to the slaughter
At the end of last year I was invited to a preview of paintings by local amateur artists. As I wandered along the corridors studying the exhibits, my heart went out to the creators of these works, also eavesdropping incognito not only on the compliments, but also the ‘hmmms’, and sudden silences, and occasional unflattering comments. They’d laboured long and hard over those canvases, pouring something of themselves into their art. Irrespective of the appeal of any given painting, I had to admire their courage hanging their work for public scrutiny.
I personally liked a number of the exhibits, and indeed bought this one, which I’m delighted with.
So, given the hazards of parading one’s creativity, you might well ask, what on earth possessed me to put myself in the firing line quite deliberately, by asking a group of very excellent and discerning women readers to tear my current novel to pieces in front of me. Hello? I’ve long been conscious of the fine dividing line between normality and insanity, and my own teetering vulnerability. But this time my lapse was calculated.
To begin with I have a healthy respect for this group of professionals. Last year they invited me to go along to one of their bookclub meetings where they were discussing Right to Die, and I was impressed by the quality of their discussion. They engaged fully with the issues relating to assisted death as well as with the actual story and the art of writing.
And as far as my current writing goes, now is the time to hear constructive criticism, not when it’s between covers. Hitherto all my novels have been published by independent publishers, and the journey to the bookshops by this route includes stages of critique and editing. This might not happen if I do decide to self-publish Over My Dead Body, so I’m going to considerable lengths to get it polished as much as possible by other means. Approaching the bookgroup seemed like a splendid next step.
I made sure they all knew the terms of engagement from the outset: the book is in draft form and I’m looking for rigorous and honest analysis and comment. Flannel and flattery would render the process useless.
So I duly rolled up on Monday evening prepared to be slaughtered in the name of my art. (Can you smell the adrenalin already?!) In the event it turned out to be a really enjoyable and interesting experience. Initially they were concerned for me, being on the receiving end of their criticism, but I can honestly say I was not in the least bothered by it. There was a constructive point to it; it wasn’t malicious or personal. Indeed I’d invited it. It’s always a real thrill to have people talking about my characters as if they know them, and as one of the women said at the end, to have a roomful of people discussing a book in such an animated and engaged way said something about its overall appeal.
So what did I learn? The subject of organ donation is fascinating; all of them agreed on that. They actually wanted more fleshing out of the transplant bits (that really surprised me). Indeed, some found the subplots I had included as hooks, ‘distracting’ and ‘too emotionally draining’. Curiouser and curiouser! (Does this say something about my own over-exposure to the subject?)
The other surprise was that a child character I struggled with most, they all loved. I’ve several times been on the point of removing her sections; now, thanks to their input, I have the confidence not to do so.
So, what next? I have to weigh up each of their comments and consider how much any changes would disturb the overall balance of the book. Taking out a child crime and/or a missing woman and/or a psychotic father and/or a severed limb and/or a wrecked marriage and/or a drug smuggling would inevitably alter the weightings. And might result in a total collapse of the infrastructure of the story … HELP! Adding more descriptive detail might alienate people who want fast action and variety.
I’ve been scribbling furiously ever since, but trying not to rush into too many radical revisions. After all, as the familiar adage has it: You can’t please all of the people all of the time. And I’m the one who has to stand by the finished product.
To write or not to write? that is the question
As I indicated last week, it’s an ongoing preoccupation with me – will readers want to immerse themselves in dark, melancholic tales? The issues I tackle all have this side to them, and each time I have to work hard at achieving a healthy balance; each time I worry: have I got it right?
Take Right to Die. For those of you who haven’t read it, it tells the story of a young man, Adam, who develops Motor Neurone Disease when he’s only 38. He knows he will die within a couple of years or so. Yep, plenty of scope for low spirits there, and I confess I still can’t read it without weeping myself. But then, I know Adam intimately. I lived with him for several years, and his spirit lingers with me. It’s personal.
So it was tremendously warming last Thursday to be invited to put in a guest appearance at a book club, and hear that, though they feared the worst, the members didn’t find the book at all depressing. They were so generous about it, and we had a wonderfully uplifting evening analysing why not, and teasing out the components of a book that ensure a good read. Yes, we did discuss the pros and cons of assisted dying along the way, but also what made Adam warm to the colourful Jamaican physio Lydia, but not the texbook perfect Veronique. Do exemplary GPs like Hugo Curtis really exist? Why did the cat have to die? What was really going on in that closed room between the GP and his patient? Do we smell romance between two of the principle characters? Very confirming. And such fun. I salute you, ladies! (Apologies for the poor quality photo – it doesn’t do you justice.)
This got me thinking about other books of a similar complexion. You know the kind of thing: Lionel Shriver’s We Need to Talk about Kevin; Jodi Picoult’s Nineteen Minutes; Alice Sebold’s The Lovely Bones et al. And no, those novels didn’t depress me either. Why not? Because the macabre subjects (teenage massacres, rape and murder) were handled so skilfully, the stories so well told. I was challenged but not crushed.
Which brings me to Jeffrey Eugenides. 
I read and loved his wonderful book on hermaphroditism, Middlesex, ages ago. So when I saw his earlier novel, The Virgin Suicides, I snapped it up. This week it rose to the top of my pile and I devoured it in two sittings.
It’s not in the same league as Middlesex, but still worth reading. Basically it tells the story of the five adolescent Lisbon sisters who all commit suicide. Dark material? Positively ink black. The girls grow up in an eccentric and isolated environment. They’ve become an object of fascination to the local boys who watch them from various vantage points, and even on one memorable occasion, entice four of them out a joint date – the only one they were ever allowed. The narrator is one of these lads who, now grown up, looks back at the unfolding saga as if he’s compiling evidence for what happened, and searching for a plausible explanation.
Hmm. Teenage suicide, self harming – definitely not cheery bedtime reading, I think we’d all agree, so why is it so entertaining? Well, the tone, the style of writing, the irony, the humour of each situation, bring a light touch that seems to take the sting out of the essential tragedy, diverting attention and setting a broader canvas against which the lives of these doomed girls are played. Hard to describe so I’ll try to illustrate what I mean.
We aren’t worrying all the time about terrible happenings jumping out at us just as we start to get attached to the characters. Come to think of it, I didn’t form an attachment to any of them. We know from the outset that they will all die as you can see from the opening sentence.
On the morning the last Lisbon daughter took her turn at suicide – it was Mary this time, and sleeping pills, like Therese – the two paramedics arrived at the house knowing exactly where the knife drawer was, and the gas oven, and the beam in the basement from which it was possible to tie a rope.
And we also know early on that we are in sure hands. From Eugenides’ account of the girls’ intentions:
And it was then Cecilia gave orally what was to be her only form of suicide note … ‘Obviously, Doctor,’ she said, ‘you’ve never been a thirteen-year-old girl.’
… and even of the deed itself:
Through a side window we could see Mr Lisbon standing in the shrubbery. When we came out the front door we saw that he was holding Cecilia, one hand under her neck and the other under her knees. He was trying to lift her off the spike that had punctured her left breast, traveled through her inexplicable heart, separated two vertebrae without shattering either, and come out her back, ripping the dress and finding air again. The spike had gone through so fast there was no blood on it. It was perfectly clean and Cecilia merely seemed balanced on the pole like a gymnast. The fluttering wedding dress added to this circusy effect. Mr Lisbon kept trying to lift her off, gently, but even in our ignorance we knew it was hopeless and that despite Cecilia’s open eyes and the way her mouth kept contracting like that of a fish on a stringer it was just nerves and she had succeeded, on the second try, in hurling herself out of the world.
… and the funeral:
Only the family filed past the coffin. First the girls walked past, each dazed and expressionless, and, later, people said we should have known by their faces. ‘It was like they were giving her a wink,’ Mrs Carruthers said. ‘They should have been bawling, but what did they do? Up to the coffin, peek in, and away. Why didn’t we see it?’ Curt Van Osdol, the only kid at the Funeral Home, said he would have copped a last feel, right there in front of the priest and everybody, if only we had been there to appreciate it. After the girls passed by, Mrs Lisbon, on her husband’s arm, took ten stricken steps to dangle her weak head over Cecilia’s face, rouged for the first and last time ever. ‘Look at her nails,’ Mr Burton thought he heard her say. ‘Couldn’t they do something about her nails?’ And then Mr Lisbon replied: ‘They’ll grow on. Fingernails keep growing. She can’t bite them now, dear.’
This concentration on seemingly unconnected and disproportionately trivial points fits with the narrator’s original naive understanding of what was really happening. The tragedy of five teenage suicides in one family, of the subsequent disintegration, is subsumed under a welter of information about swarms of fish flies, and cats yowling, and unearthly smells, and protests about tree felling, and boys trying to glimpse girls in various states of undress – the preoccupations of adolescent youths. In this case a very clever tactic for counter balancing the horror of the Lisbon tragedies. The more adult understanding that comes from later interviews with neighbours, teachers, parents; the piecing together of exhibits which make sense of the seemingly incomprehensible, is titrated in as necessary in order to create a cohesive picture of what was really going on.
Reading this, analysing it, was like a mini master class for me. Would that I had this kind of skill. It also made me see that dark topics need not be off limits.
Authentic fiction
I do love hearing from readers, and I’m always impressed when they make contact. It’s something I rarely do, but should do more often – no, not with myself, with authors whose work I’ve enjoyed.
‘Star letter’ this week goes to ‘Trish’ who wrote asking for the reference for a medical thriller mentioned in my novel Right to Die. The main protagonist, Adam O’Neill, a journalist who has developed Motor Neurone Disease, lends the thriller to his GP, Dr Curtis, and writes in his diary:
He’d brought back a book I’d lent him, a brilliant medical thriller about a serial murderer who developed aplastic anaemia. I’d been impressed by the twist in the tale, and thought Curtis might appreciate its medical cleverness. The killer went on to have a bone marrow transplant from his sister. Result: when he was a suspect years later the forensic people said he couldn’t be the killer because his DNA didn’t match the samples from the crime scene. Naturally, the hotshot detective got hold of some distant relative and winkled out the story of the transplant and hey ho, the villain’s clapped up in jail and they’ve thrown away the key.
The crime story was entirely fictitious, but of course I was chuffed to find someone wanted to read it. And more delighted still that my correspondent wrote to me subsequently to say she was a nurse who works with people with MND, and how true Right to Die rang with her experience. That kind of endorsement from experts is special. Very confirming.
In a couple of weeks time I’m due to attend a bookclub where the members are going to be discussing Right to Die, so I’m hoping they’ll be as enthusiastic as Trish. I know there’s at least one doctor in the group, so I’m not expecting an easy ride. But the challenge is stimulating, and there’s a particular thrill in hearing other people talk about my characters as if they’re real people. To me they are; I know them intimately.
Trish’s endorsement made me feel so chirpy I abandoned research into auto-immune hepatitis (for my current novel) and went off to try out a new recipe for a raspberry and amaretti gateau. Nicely used up the last of the raspberries from the garden.
Leaking roofs and pious atheists
In a rash moment this week, when the brain was too overloaded for productive writing, I started a task I’ve been putting off for years: sorting three decades-worth of medical ethics papers. In my former life I was very methodical about filing things – reports of legal cases, newspaper items, ethical conundrums, erudite musings … documents going back to the 1980s, all carefully labelled and organised by subject. But since I left university life they’ve been stored on a top shelf in my study, eleven feet up, so rarely opened.
It took the discovery of a slow leak in the roof above the said shelves, to jerk me out of this inertia. The shelf had to be emptied, might as well sort things. Ahhh … familiar faces … remembered cases … I confess I was more than once sorely tempted to put the whole lot back, and I felt quite bereft consigning all that history and research to recycling oblivion. Slow recovery underway.
Most of my attention, of course, has been directed at the ongoing Festivals.
So, highlights of this second week?
From the main Festival:
The visual spectacular Speed of Light, described as ‘a fusion of public art and sporting endeavour‘, masterminded by artistic director Angus Farquhar. Edinburgh’s Arthur’s Seat became the stage set for an amazing choreographed spectacle.
Hundreds of walkers (carrying lights) and 
endurance runners (wearing specially designed light suits) wove patterns and created tableau on the hillsides, like fairy-lights wafting in the wind, or streams of fireflies playing catch-me-if-you-can in the darkness. 
‘Tripping the light fantastic‘ came to mind! My son-in-law was one of the runners so this show was a must.
I’m afraid the camera couldn’t do justice to the total effect, but you can see much better pictures and more about how it was made, what it means here.
From the Fringe Festival:
The play, And No More Shall We Part, was billed as ‘an uplifting testament to the power of love and the indomitability of the human spirit.‘ Written by award-winning playwright Tom Holloway, it looks at what happens to a long standing relationship when one partner is terminally ill and makes a brave decision to take matters into her own hands. Bill Paterson and Dearbhla Malloy are convincing in their roles as undemonstrative Scottish husband, Don, and his chattering Irish wife, Pam; they beautifully capture the habits of an aging couple, the essential loneliness of death, and the effect of imminent separation. Clever symbology using doors on a revolving stage, minimal sound effects, and sparse conversations were most effective. The show confirmed one of my suspicions, though: having immersed myself and nearly drowned in the emotions of this subject while writing Right to Die, I don’t react as acutely to things like this play as I once would have. Nevertheless it was well worth seeing.
From the Book Festival:
Undisputed star of my week here was well-known philosopher Alain de Botton. He’s a ‘committed atheist‘ but in his latest book 
Religion for Atheists he argues that non-believers should stop mocking those who profess a faith, and instead learn from them, because the world’s religions are full of good ideas on how to live well and arrange our societies. As he puts it, ‘Religions are in the end too complex, wise and fascinating to be abandoned simply to those who happen actually to believe in them’. He’s a brilliant speaker and he took us on a wander round a ‘buffet table‘ of good things all influenced for the better by religion – education, calendars, oratory, art, institutions, community, travel, relationships, treatment of strangers. As the chairman said, he’s ‘trying in his own way to make the world a better place‘, and by the time we left, there was a distinct sense of benevolence and bonhomie towards our fellow man in the Main Theatre marquee.
Just two more sessions to go before I end my stint as official blogger for Genotype. It’s been great fun. And very good discipline.
Hannah’s Choice
Memories and emotions relating to my brother, Rob, have been flooding back this week. I’ve been reading Hannah’s Choice by Hannah and Kirsty Jones (assisted by Megan Lloyd Davies), a book I’ve had on my wish list for ages but only just recently bought. I read it in one sitting, and then I dug out the letters Rob wrote to me at the time of his illness, and read them again too.
In 1997 Rob was diagnosed with leukaemia. And in the ensuing months he faced some of the biggest questions of his life. Should he go for potentially dangerous treatments – chemotherapy, bone marrow transplant – or not? When one course of action failed should he go back for more? As a fully competent adult in his forties, he was very aware of the relative risks and consequences of the different options. There were no easy answers. Decisions he made would have implications, not only for him personally, but for his young family too. I knew those risks intellectually, but even so I was unprepared for the emotional impact of accepting his choices and then seeing him develop serious complications and battle for his life. I often asked myself, what would I have done in similar circumstances?
But imagine weighing up such risks and benefits not for yourself but for your child, a child who is not yet a teenager. And then imagine if she resolutely maintains she wants to make her own decisions … but her choices don’t square with yours. That’s Hannah’s story.
I well remember the furore raised by her personal decision not to have a heart transplant, which hit the headlines in 2008. Her choice sparked a vigorous debate about a child’s right and ability to make a life-or-death decision. I was much exercised by the arguments at the time, but somehow I’d either missed or forgotten (not uncommon these days!) what happened after she went home to die, so the ending of the book came as a surprise to me. In case you’re in the same position I won’t spoil it for you.
Hannah faced not one but two life-threatening illnesses: leukaemia when she was four years old, severe heart disease (cardiomyopathy) subsequently. The firsthand account of her treatment makes harrowing reading and reminded me vividly of the agonies my brother endured.
‘Hannah started being sick up to six times a day and had terrible diarrhoea. Her fingernails and toenails had also fallen out to reveal raw red nail beds which I dressed each day with tiny pieces of paraffin gauze which had been chilled in the fridge … She also needed gauze pads placed under her heels, shoulder blades and bottom to stop sores developing because her skin was peeling – the new skin so painful that she had to be handled like a burns victim. For several days we could hardly touch Hannah because she was in too much pain, and even her mouth bled – blood caking her gums, teeth and lips which I tried to wipe gently away.
As I did so, I wondered how high a price anyone could pay for being cured, let alone a child. Hannah was wracked with pain, and although I wished I could feel it for her, I couldn’t.’
The price paid is indeed high. And there are no guarantees.
Hannah grew to hate hospitals. And she hated being treated differently. She didn’t want the ‘Chitty Chitty Bang Bang looks’; she wanted to be told off when she was naughty; she desperately wanted to be ‘normal’. Meeting other children with limited life expectancy she said: ‘… we talked about the here and now, not the future, and that’s what I like to do – take every day as it comes, which means you mostly enjoy them instead of worrying.’
Sadly, early into her treatment things went unexpectedly and badly wrong. After two of the recommended six rounds of chemotherapy to treat her leukaemia, Hannah’s heart became seriously damaged by the toxic drugs – a very rare side effect. Now her parents were faced with an even more stark choice: stop the chemotherapy and risk the cancer returning, or continue with treatment but risk further damage to the heart.
‘How could Andrew and I decide to stop the treatment that was meant to be saving Hannah’s life? But how could we continue the chemotherapy knowing we might risk Hannah’s health in another way? Surely it was an impossible choice?’
A compromise was reached. Hannah had one more round of chemotherapy. The leukaemia didn’t return but the heart problems increased. Her kidneys started failing. She was a desperately sick girl. As she deteriorated her only hope was a heart transplant. By now though, Hannah was herself older, 12, then 13; she had her own views. She’d grappled with illness since she was four, she’d spent much of her life in hospital, she knew pain intimately. And she knew she did not want to remain in hospital; she did not want a heart transplant. She wanted to go home, to be amongst those she loved, to enjoy the simple pleasures of childhood while she could. As she was quick to clarify, she wasn’t asking for the ‘right to die’, but for the right to live her life in the way she wanted – at home with her parents and her siblings.
Her parents showed amazing courage. In spite of criticism, they listened to their daughter, they respected her opinion.
‘… I’d learned that children who have felt death whisper at the edges of their world can become wise beyond their years.’
‘Her gaze was that of an old soul, staring out from a child’s face. It was the same look she had given me a long time ago when she had fought for her life the first time, and in moments like those I understood that Hannah had been to places I could never know.’
Whatever her decision, they told her, they would support her. Indeed Kirsty, her mother, an experienced nurse herself, went further. This journey alongside Hannah had taught her powerful lessons about life and about parenthood, she said.
‘I remembered the moment she was born, the feeling of the tears slipping salty down the side of my face as I held Hannah for the first time. Back then I’d known how lucky I was to have her after waiting for so long. But it was only now I knew for certain that she was not mine to keep or lose: Hannah, like every child, was a gift, not a right. I must cherish her for as long as she was mine.’
But a locum doctor couldn’t accept Hannah’s decision, and he set in train a course of action that added considerably to the strain the family were under. Hannah was threatened with a court order to remove her from the custody of her parents and force her to have the operation. She was required to make her case alone to a child protection officer.
However, whilst there were plenty of strangers who disapproved of their choices and had no hesitation in saying so, the Jones family were supported strongly by the healthcare professionals who had known them throughout the years of their ordeal. Hannah herself, though she hated being in hospital, found peace and comfort in a children’s hospice. When she heard about MPs fiddling their expenses, she drew up a list of things she’d do if she were Prime Minister. Top of her list was: ‘Make the government pay for children’s hospice care like Acorns because they don’t and I think that’s really bad.’
Out of the mouths of babes …
This book is an amazing story of courage and love. And challenging. Would I have had the strength to let my own child of 13 decide to forgo the one treatment that offered hope of a 15th birthday? I don’t know. How can we know until we’re faced with such a situation? But having read this book I have nothing but admiration for the pathway this family chose.
Locked in to a fate worse than death
Tony Nicklinson is 58. He’s paralysed from the neck down, can’t speak, and his only means of communication is by moving his eyes on a screen linked to a special computer. And yet his brain is so alive and intelligent that he can hold his own in arguments with twitters and QCs alike.
Prior to the stroke, Mr Nicklinson was a handsome, successful, fun-loving man, keen on extreme sports. He was in Greece on a business trip, when he suffered a catastrophic stroke in 2005. Now he is in a locked-in state, dependent on carers for his every need, with no hope of recovery. He considers his life as ‘miserable, demeaning and undignified‘. He ‘has no privacy or dignity left‘, and he rates it a state worse than death. He’s held that view since 2007; it’s no passing whim. It’s what’s described as a ‘voluntary, clear, settled and informed wish’ in legal parlance. Watching him on The Channel 4 documentary, Let Our Dad Die, surely no one could help but sympathise with his viewpoint. Even the Greek doctor who saved his life is appalled by the consequences of his actions, although no blame attaches to him.
In March Mr Nicklinson won the right to have his case heard by the High Court. The hearing took place last week (starting 19 June). There was considerable media interest in the run up to it. Lord Falconer visited the family at home. BBC’s Fergus Walsh went to see for himself what kind of a life a locked-in patient has. Channel 4 aired its documentary. Though he could communicate with these people in his own home, Mr Nicklinson was unable to attend the hearing in person, so he stated his arguments through emails and lawyers.
His case? Simply put, he is incapable of taking his own life, so he wants the judges to rule that, when he decides he wants to die, a doctor will be immune from prosecution if he/she helps him. Mr Nicklinson fully realises that the law as it stands prohibits anyone else taking his life; that would be murder. His defence rests on the view that he is being discriminated against, because of his disability. He is looking for assistance to do what he would do for himself were he able. Furthermore he adds poignantly, why should other people be allowed to condemn him to a life of increasing misery?
His barrister described it in more ponderous legal terms: ‘a serious interference of his common law and Convention rights of autonomy and dignity’.
It’s important to note that Mr Nicklinson is not seeking a change in the law. He is seeking two declarations from the court.
1. That in the circumstances of his case – and where an order has been sought from the court in advance – ‘the common law defence of necessity would be available to a doctor who, acting out of his professional and human duty, assisted him to die‘.
2. That the current law of assisted suicide and euthanasia is incompatible with his Article 8 rights of autonomy and dignity .
The QC acting for this family argues that a prior sanction by a court ‘would provide the strongest possible safeguard against abuse’. And furthermore ‘it would also provide a safeguard against the concern, often expressed by disabled opponents of legalisation, that a change in the law would lead to a change in people’s attitudes to disabled people, who they predict would come under subtle pressure to seek an assisted death through fear of being a “burden”.’
But any loosening of the limits frightens the legal fraternity. Speaking directly to Mr Nicklinson, Lord Falconer made it perfectly clear that in his judgement, modifying the law to accommodate such an act would be ‘crossing the Rubicon’. He was himself sympathetic to assisted suicide in cases of terrible disability with no prospect of improvement, where the patient expressed a sustained wish to put an end to their misery, but ending someone else’s life is murder and that must always be unacceptable.
Pause here for a moment and ask yourself: What answer would I give to Tony Nicklinson?
Watching the documentary I wanted to weep with this man. His chagrin, his pain, were palpable. But there again, as Christina Petterson put it in The Independent,
‘… the law isn’t about how we feel. The law isn’t about how you feel if you were once healthy and fit and happy, and now aren’t. The law, as Lord Falconer said on that Dispatches, is the same for everybody. “If people want to kill themselves,” he said, it’s an “entirely private matter”, but “they can’t kill somebody else”. The law, as the disability rights campaigner Kevin Fitzpatrick also said on the programme, is meant to offer protection. “When you develop a society where some people judge that other people’s lives are not worth living,” he said, “that’s the Rubicon.”‘
There can be no happy ending for the Nicklinsons, neither Tony, nor his wife, nor his daughters. But each time a tragic case like this comes to court, and I watch the family being forced to parade their lives in front of others, to expend dwindling energy on fighting their cause, I feel there has to be an alternative.
I can, of course, see the dangers inherent in a change to the law against taking life. The consequences could be inconceivably horrible. I accept too that these extreme cases make bad laws. But the fact remains, that these exceptional circumstances do present from time to time. And they seem to cry out for special judgements.
Would it be so terrible to openly acknowledge this fact, and to relieve these families of the necessity of taking their cases to the courts? Why not constitute a sort of Ombudscommittee – a gathering of carefully selected, experienced and wise folk, representing law, medicine, religion, ethics, patients – who could quietly, rationally, compassionately, debate the very few cases which fall into this terrible legal limbo, taking guidance from others as and when they need it? Not in such a way as to drive the debate underground, not to sweep the anomalies under the carpet, but to take individual cases away from the heat and distortion of media coverage, protecting and supporting those for whom this dilemma is a lived reality not a theoretical argument.
I haven’t ever seen this idea promoted, and it’s the first time I’ve aired my own view on this. So what do you think? Would you be in favour? Or can you see some glaring reason why this would not be an acceptable way forward?
What would your solution be?
Rating and reviewing
It’s commonly said that a bad review is better than no review, but I can’t imagine any author enjoys getting slated by readers or receiving poor star ratings. Indeed some writers deliberately never look at the reviews lest they are derailed by them. But what a subjective thing it all is anyway. Your meat, my poison, and all that.
Let me illustrate. Last week I read The Kindest Thing by Cath Staincliffe. It was recommended to me as ‘your kind of book’, and the Kindle version was a mere 99p, so of course I snapped it up. And indeed it is my sort of book. It’s accessible fiction dealing with a thorny on-going medical ethical issue in a challenging way, leaving me asking, What would I do in these circumstances? Familiar? In fact it’s the closest thing to my own novel about assisted dying (Right to Die) I’ve seen thus far.
Basically it tells the story of 50-year-old Deborah who is on trial for helping her husband Neil to die rather than continue life with Motor Neurone Disease. Her own daughter reports her to the police. Her son’s precarious mental health is threatened. Prison gives her too much time to reflect on the repercussions of what she agreed to. Yep, my kind of thing definitely. And I enjoyed it.
As did many others. Most reviews I’ve seen are strongly approving: ‘beautifully written’, ‘pitch perfect’, ‘page turning stuff’, ‘sensitive’, ‘powerful’, ‘courageous’. The main protagonist is both likeable and believable, they said.
But a few folk, reading the same book, about the same characters, have slated it: ‘shallow’, ‘depressing’, ‘tedious’, ‘predictable’, ‘unlikeable cardboard characters’, ‘offensive and narrow-minded’, ‘cheesy’.
Oh dear. If someone said such things of my work, I’m pretty sure I’d succumb to a horrible sinking feeling. Possibly even go into a temporary decline. But why? One step removed, viewing these comments dispassionately, I can see quite clearly it’s a subjective opinion. The readers are free to express it. They might (or might not) even be having a bad day, or going through a rough patch themselves, or they may have a hidden agenda, or feel threatened by the author in some way.
In any event, it’s a known and accepted fact that we all like different kinds of writing. If you’ve ever belonged to a bookclub, even one made up of like-minded people, you’ll have experienced that reality. And haven’t you ever read a bestselling book that’s had rave reviews, and wondered what all the fuss was about? Be honest now, how many Booker prizewinners have you really enjoyed?
Me, I don’t care if everyone else loves a book, if I don’t, I don’t. End of story. OK, I might analyse the pros and cons more carefully if I’m decidedly out of step with respected opinion, but I’m not tempted to trot meekly along in the wake of the majority just to conform. Because there can be a myriad reasons in my life and belief system and experience and preferences why I personally feel as I do about that particular book. I am perfectly entitled to my subjective opinion.
So, what am I saying? Well, criticism feels very different when you’re on the receiving end. But perhaps we authors are unrealistic from the outset. We shouldn’t expect to achieve unqualified 100% five-star ratings. Remember those famous lines from the poet John Lydgate, later adapted by President Lincoln:
‘You can please some of the people all of the time, you can please all of the people some of the time, but you can’t please all of the people all of the time.’
Cath Staincliffe’s ratings have given me new heart. From henceforth I shall not even attempt to appeal to all tastes. I shall concentrate on being true to myself. And if and when a poor review pings in, I shall pick myself up, dust myself off, and get right back on that writing horse. God willing. Oh, and if that fails, re-read this post!
