assisted death
Physician-assisted suicide or mercy killing – a medical thriller
Mercy by Michael and Daniel Parker (a father and son duo) begins with a quote from the Dalai Lama:
Love and compassion are necessities, not luxuries. Without them humanity cannot survive;
and ends with
Compassion is what binds us. It’s what makes living worthwhile.
A neat bookending of the substance of this novel which centres on the controversy around mercy killing. Yep, I’m back in my familiar milieu. And given that the topic comes before the UK Parliament again tomorrow, it’s topical.
The narrative opens with a chapter recounting the deliberate killing of a patient in end-stage cardiac failure – told from his perspective. But something’s decidedly wrong here. It’s certainly not a mutually agreed procedure. We feel the patient’s terror, and are hooked in immediately. And then there’s the person administering the lethal medication: coldly dispassionate not gently reassuring. We’re alert to trouble from the outset.
By contrast, the main protagonist in this story is emergency room intensivist, Dr Julie Devereux, a passionate but compassionate advocate for death with dignity. Her ambition is to take officialdom and government out of the equation and let the patient with his/her doctor decide together what’s best for them, always staying within the law.
Then one day the patient is her fiancé Sam, hideously injured in a three-vehicle collision which she personally witnessed as he was driving his motorcycle ahead of her on a fast road. Along with multiple fractures and serious open wounds, Sam has suffered a crush injury to his fourth cervical vertebra – he faces the rest of his life as a permanent quadriplegic with a tracheotomy, requiring a raft of medication to keep his body functioning.
When he emerges from oblivion and is able to comprehend the desperate situation, Sam begs Julie to help him die.
‘I can’t live like this … You’ve fought for death with dignity for years, now fight for me.’
She’s appalled by the idea when it applies to the man she loves, but he throws her own words back at her:
‘The best care should be made available to every patient, but a patient deserves the right to hasten death to avoid inhumane suffering or escape from a life turned unbearable.’
Now, on the other side of the situation herself, Julie does an about-turn, arguing passionately against all the speeches she’s made, all the papers she’s written, all the arguments she’s employed for mercy killing – for continuing life.
But then something inexplicable happens. Sam suddenly collapses and dies. Julie is acutely aware that something isn’t right. He might have wanted fiercely to die, but he was incapable of doing anything himself to induce death. She didn’t help him, so … what happened? Was this a medical anomaly or did someone do something to cause his death? She starts asking questions, challenging results, and piecing together a bewildering picture. Because the autopsy results indicate a very rare stress phenomenon: takotsubo cardiomyopathy, an instant reaction to an extreme stressful stimulus resulting in an abnormal surge of adrenaline, constricting the coronary arteries, and diminishing blood flow. It seems Sam was literally scared to death.
Julie begins to investigate. She unearths other similar deaths, and gradually a picture emerges of skull-duggery beyond belief. Her search takes her to interview a convicted murderer in prison, to talk to ardent campaigners for life, and experts in many branches of medicine and science. The common link between all the unexpected deaths initially seems to be this enlargement of part of the heart: takotsubo cardiomyopathy … or is it? Why did all these people develop hives just before death? Could it be an acute allergic response? If so to what? And who is behind it?
Administrators desperate to stop the rapid drain of money from the hospital?
Doctors with reputations to maintain?
Parents wanting to avenge their dead children?
Aggrieved staff looking for revenge for dismissal?
Someone with their own personal agenda?
Who?
Still more patients die. When their lab results come back they make no sense; no, more than that, they’re downright sinister. Allergic cardiac events, tics, massive overdoses …?? And a common feature seems to be that all the victims are very ill, severely incapacitated, or at the end of their lives – some even asking to die. It looks on the surface like a macabre version of mercy killing.
It’s now no longer a case of finding out who or what killed Sam; it’s a race to stop more people dying.
But what Julie doesn’t know is that with every piece of the jigsaw she discovers, she’s putting herself in greater danger. Her every word, every movement, is being monitored by a paid assassin who’s simply biding his time. One by one her supporters are picked off. And her own previous high profile in relation to assisted dying becomes a weapon in the hands of her adversaries. She herself becomes a prime suspect.
We’re kept in suspense until the very end, and I for one did not suspect the person who actually killed Sam, though I was suspicious of some of the administrators charged with balancing the books. A thriller in the best sense, and one in my own field of interest! Wahey!!
[NB. Meticulous research went into this story but just for the record, it’s not sparrows but starlings that form murmurations! (pp222-3) But in a work of this calibre it’s actually quite comforting to note a tiny human chink in the overall brilliance!]
Is it ever right to take a life?
With all the events marking 75 years since D-Day and the Battle of Normandy, and other war-related events, my mind has been travelling the well-worn path of … is it ever justifiable to take a life? And is there a kind of life that’s worse than death?
Then for the last two Thursdays those questions have swirled again, watching Susanna Reid interviewing inmates awaiting execution in maximum security prisons in the USA for her series: Death Row: Countdown to Execution. The state of Texas supports the death penalty, and the locals appear to take it in their stride, but Susanna found it unsettling just being in the town with the execution chamber, to know exactly when a human being was being walked to that gurney, strapped down, given that lethal shot of Pentobarbital. She wanted to know exactly what was happening, how everyone felt – the convicted man, the family, the witnesses, the townspeople. She’d met these men briefly in the last few days of their lives, and in spite of their criminal backgrounds, it clearly troubled her.
Many inmates are held on Death Row for decades (the average 12 years) and massive amounts of money are spent on appeals even up to the eleventh hour. Fewer than 2% are exonerated but the process has to be gone through, seeking additional years or days of life if nothing else. For those who are the victims of the crimes (and that often includes the family of the convicted man) the death brings a form of closure; but opponents believe that society should not sink to their level. After all, as they said, we don’t rape rapists, we don’t steal from burglars; why should we kill murderers? ‘We should be better than that.‘
And against all this my mind goes to my own area of particular interest, viz the issues around assisted death for people on a different kind of trajectory: those with incurable, degenerative illnesses; trapped for years in many cases, with no hope of a reprieve. Their own kind of death row; their own kind of hell. And our society – too humane to kill convicts – is also unwilling to countenance patients ending their own lives when the pain, the suffering, the indignity, are intolerable. Is this justice? Is this fair? Is it humane? As Scottish former Rugby Union player Doddie Weir (who has Motor Neuron Disease himself and has just buried his mother after a fairly short experience of cancer) said this week: Being a farming boy, when there is no hope with the animals you are able to put them out of their misery, but with humans it is not allowed. It does not seem fair sometimes.
So many truly difficult questions; so many nuances and valid perspectives. I studied this topic in depth before writing Right to Die, published in 2008. I’ve repeatedly returned to it since. Eleven years on we’re no further forward in terms of the law. Assisted suicide is still illegal; doctors who help a person to die still face a jail sentence of up to 14 years. However, public opinion has swung much more towards some provision to help people caught up in these intolerable situations, helped in no small measure by the brave souls who have shared their harrowing experiences openly. Then in March this year, the Royal College of Physicians declared neutrality on the subject. And this week the Royal College of General Practitioners has said it will consult its 53,000 members on whether the time has come to drop their opposition to assisted dying. The wheels grind oh so slowly, but they do seem to be turning.
What do you think?
Could I? Would I? Should I?
With all my talk of books lately you might well have forgotten that my blog is also about ethical issues. So, something a little more challenging this week.
You’ve probably heard on the news that a teenager has just become the first to be helped to die by doctors in Belgium, a country that lifted their age restrictions on assisted dying two years ago. This girl was 17 years old and terminally ill. Let’s stop and contemplate that for a moment. 17 years old … on the cusp of life. Terminally ill … a tragedy in itself. Now dead … hard to even contemplate the agony wrapped up in that reality. Sends shivers down your spine just thinking about it, doesn’t it?
Belgium legalised assisted death for adults as long ago as 2002. And in 2014 it became the only country* in the world that allows a child of any age to choose doctor-assisted death provided they have parental permission. There are strict criteria; of course there are. The minor must be terminally ill, fully and rationally understand the difference between life and death, face unbearable physical suffering that can’t be alleviated, and have made repeated requests to die. Two doctors, one of whom must be a psychiatrist, must give their approval.
(*The Netherlands permits children to have an assisted death but requires them to be aged 12 or over.)
How do you feel about this ruling?
Would you allow your child to choose to die?
But hang on a minute. Let’s not rush to judgement without properly assimilating the facts. This is not some wilful youngster throwing a hissy fit and whining about a passing ache. This is a wise-beyond-their-years person who’s known extreme and unremitting pain, who knows he/she’s not going to survive this illness. Given these circumstances, could you bear to stand by? Listening to the agonising screams? Seeing the appeal in the eyes? Watching the dying process be strung out, knowing … knowing there’s a way out, a legal option? Wouldn’t you be begging someone to do something … anything?
An opinion poll taken a few months before the law changed to allow children this choice, suggested that 75% of Belgians supported it. Understandably many churchmen, especially those of the Roman Catholic church, opposed it. OK, we know they have strong opinions and beliefs about the sanctity of life. But so too did many doctors. What does this say? They after all are the ones who care for these tragic families, make decisions about treatment, convey the bad news, feel their own powerlessness. This isn’t theoretical for them; they actually stand at those bedsides, see the agony up close and personal.
Could it be that the doctors baulk at a law that allows the life of the child to be ended actively, because they are the very people who’d be asked to actually do the deed? And they are trained to cure, not to kill. It’s so much easier for a lay person to say, ‘Oh yes, a child shouldn’t suffer unbearably; you should help them to die with dignity,’ when they know they will not be the ones called upon to inject that lethal drug.
So, maybe the question ought to be: Would you be willing to end that life yourself? And if not, is it hypocritical to approve of a law allowing assisted dying?
If so, how many of us are guilty as charged?
I’m ridiculously squeamish. I struggle to kill an insect or an arachnoid, preferring to capture them and return them to the wild. There’s something very, very special about life, especially a human life. And I’m absolutely certain I could not be actively involved in the death of a child … or … am I? Because the alternative appalls me. What right have I to insist a child endures terrible suffering? I’m not at all sure I could stand by and not do something to help if it were in my power. Maybe, just maybe, there are certain circumstances where I might feel compelled to forfeit my own comfort, my own preferences, even possibly my own principles, and put the child and his/her interests first. Whether or not I would actually do the deed is unknown. I’ve never been tested.
We haven’t come close to approving assisted dying for adults in this country yet, never mind for children. The majority of – not all – doctors and politicians oppose a change in the law. But we all ought to thoroughly consider the options and consequences nevertheless. I’m not, thank God, facing this devastating dilemma at this precise moment. You might not be. But there are too many families for whom this is no hypothetical question; this is their ongoing living nightmare. What kind of a society do we want for them?
As the late Sheila Bloom, Chief Executive of the Institute of Global Ethics once said, ‘It isn’t about knowing right from wrong – we can all do that. It’s often about choosing one right over another and finding good reasons for it.’ Or we might add, sometimes choosing the lesser of two evils.
Sobering questions for an autumnal Thursday morning, huh?
A short stay in Switzerland
D’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).
Well, 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. 
So evocative were they of the Swiss Alps that the real locations exactly conformed to my childhood mental images.
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. 
I 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! 
The 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.
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.
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.
Money, medicine and morals
Sigh … another sigh – king-size this time … groan … gnash of teeth.
It’s official. On Amazon even. My next book, Saving Sebastian, will not now be out until January 2012. And yes, I’ve been both frustrated and cross. At each stage I completed my side of things on time – if not early. But these are circumstances outside my control. And no amount of appeal or indignation or even anger would change anything, so no point in wasting energy there.
However, we do now have a draft cover. Wahey! What d’you think? Does it appeal?
OK, I confess I’ve been a smidgeon depressed by the ongoing delay, but life has a habit of putting things into perspective. And in the face of real tragedy, well, it’s only a book. (Let’s hope my publisher doesn’t read this, eh?) Compared to the heartache of the Shakeel family, another five month wait for Saving Sebastian doesn’t even deserve a mention.
Five years ago this impoverished family in India rejected an offer from the Crown Prince of Abu Dhabi to pay for their conjoined twins to be separated. The separation would have necessitated five or six operations over nine months, each one carrying a one-in-five risk of death. The parents were too afraid of losing one of them to accept that risk or the Sheik’s offer.
Those twin girls, Saba and Fahar, are now 15. According to the latest reports, they are in great pain and deteriorating. They share kidneys and vital blood vessels to the brain. They suffer severe joint pains, blinding headaches, slurred speech, distorted limbs. Their brother says they are enduring 15 hours of unremitting pain each day. They face increasing blood pressure, weight loss and weakness.
Their father says they should now be allowed to end their suffering which in his view is unbearable. He wants the government to either treat them or sanction mercy killing.
My challenge to you:
How would you respond to this request?
What factors would influence you most?
If they were your girls what would you want for them?
Shaking the Foundations
There’s nothing like a major disaster for putting things into perspective, is there?
Events in Haiti this past week have shown a tragedy on a scale beyond imagining. And they totally eclipse some of my current concerns – final editing of my forthcoming book; safety on the icy roads; wallpapering our staircase. When thousands of people are without homes or loved ones, water or medicines, why would anyone worry about a displaced comma or the style of an acronym? When whole communities lie in ruins, who cares if wallpaper is spirit-level straight? When people lie crushed beneath collapsed buildings, broken wrists and ankles seem like small fry. Yes, Haiti has had a profound impact.
It was the same with the Boxing Day tsunami, the collapse of the twin towers, the Lockerbie disaster, the Dunblane massacre … Overwhelming reactions. A compulsion to do something. Yes, we pledge money; prayers have a new earnestness; a few dedicated people may actually go to the danger zone to give their all; we set ourselves new priorities. But then … we move on, we return to our complacent lives, dwell on our own concerns, pursue our own trivial ambitions and dreams. Our species just can’t live their lives at such a peak of intensity. So I want to reflect before the spotlight fades.
Haiti has flicked the switch, but other things have happened during this past few days which have helped to focus the glare, and reminded me of important truths.
- A friend died suddenly and unexpectedly – how important it is to say all the things we want to say now, before it’s too late.
- The official apology to the victims of the Thalidomide tragedy came 50 years after the event – a sincere ‘Sorry’ means a lot.
- The new TV Book Club aired its first episode on More4 – anticipation is often more fun than realisation.
- A 59-year old woman is set to become the oldest to be offered fertility treatment in the UK – just because we can doesn’t mean we should.
- A former nurse is on trial for assisting her daughter to die – these cases highlight the horror when every choice is a tragic choice; the victims need our sympathy not our judgement.
I’ve just made the very last correction to the final draft of Remember, Remember. The last vestiges of the snow are melting. And the staircase is finished. But the devastation of Haiti will reverberate for years. I hope its impact on me will last too.