organ transplantation
Drama illuminating medicine
As you know I’m a great fan of fiction and drama being used to bring the issues of medicine to a lay audience. It was my raison d’etre for writing my own fiction. So I was immediately grabbed by a series on BBC Radio 4 this week in which Dr Rachel Clarke brings one such topic to life: organ donation and transplantation.
Screenshot
‘This is a tale of a boy, and a girl and a heart they share.’ It tells of 9 year old Keira, fatally injured in a car accident, becoming the donor for nine year old Max, a lad with a desperately diseased heart. It’s harrowing in parts, and I wept listening. A doctor herself, Rachel Clarke is someone I’ve long admired (she’s been mentioned several times on this blog) and her voice is pitch-perfect for this story. She knows all about walking alongside people in their darkest hours, about conveying devastating news, and about putting one’s own feelings to one side in order to do an immensely difficult job.
Intriguingly the narration weaves in historical detail about medical innovations that preceded this modern day miracle, making it possible, but those breaks provide welcome relief from the heart-wrenching emotion of the main story.
A couple of years ago I was personally involved in a transplant situation, and the profound emotions generated are not something I feel able to talk about. This programme offered space and privacy for a cathartic reaction, so I’m doubly grateful.
Theory v practice
I’ve studied the ethical issues around the subject;
I’ve talked to many many people with practical experience as either clinicians or patients or relatives;
I’ve even written a book on the subject – Over My Dead Body.
Yes, I’m talking about organ donation and transplantation.
So I knew the facts in theory, but this past week, I’ve had personal experience of the process, and I am impressed in a new and much more profound way by those who commit to this.
Years ago I wrote my own Advance Directive, and to witness it I chose a dear friend, a doctor, who would understand the significance of what I wanted in the event I couldn’t speak for myself – someone I could trust to ensure everything was legal and watertight and fully carried out. We shared so many values. He was twenty years younger than I, so I expected him to outlive me. But last week it was he who suffered a catastrophic haemorrhage in his brain from which there could be no meaningful recovery – exactly the kind of scenario I had envisaged for myself – and it was I who stood at his bedside and alongside his family.
He wanted his organs donated, and was on the register. Of course he did; that was the kind of altruistic person he was. But as I well knew, relatives can veto this request if they can’t bear the prospect. This family didn’t hesitate; they were behind his wishes one hundred percent, instantly comforted by the thought that this selfless act would bring new hope to other families. Now, though, I saw at first hand what they must endure in these circumstances. When we offer our organs in this way, how many of us really think what that will mean to our nearest and dearest? In the midst of their shock and grief, they must listen to and answer so many questions, they must spend so much time waiting and watching, and then have that last goodbye controlled by others.
I saw too, the sensitivity, the professionalism, of ICU staff who maintain the body in optimal condition for as long as needed, and of the transplant team who walk the family through the steps, gently, sensitive to their timing as well as the shelf-life of the organs and the desperate need of potential recipients.
In this case neither the family nor the staff could have handled things better. I was in awe of their commitment, their dedication and skill. My friend would have been so proud of them all, personally and professionally. And I have a new respect for anyone who commits to this delicate and painful transaction. They deserve our utmost respect and gratitude.
Farewell, my kind and gentle friend; you have done a most noble thing.
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.
The 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.
Then 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.
Playing God
As a writer in the field of medical ethics myself, it behoves me to know how others portray these issues in fiction, whether they be script writers or novelists, so I’ve been keeping a tally for many years now.
The authors and editor of Playing God: Talking about Ethics in Medicine and Technology have clearly travelled a similar path, and it was this little book recently that took me back to my lists and collection of DVDs.
The sheer number of films surprised me, so by way of a change I thought I’d give you a summary of those I’ve noted which contribute an angle on the topics that fascinate me – alphabetically rather than supposed order of importance. Where possible I’ll link to the official trailers to give you a glimpse of what they’re like.
abortion:
assisted conception:
Maybe Baby (link to trailer not permitted in the UK)
cloning:
decisions about treatment:
dementia:
disease control:
drug use/misuse:
euthanasia/assisted death:
human experimentation:
medical paternalism/informed consent:
mental illness:
The Curious Incident of the Dog in the Nighttime
organ transplantation:
patient rights and medical malpractice:
research malpractice:
saviour siblings/designer babies:
Wow! I’d have really appreciated this steer when I started out! But there again, maybe I value them more because I’ve accumulated them slowly over the years. If you know of others please do let me know. Just add a comment to this post or contact me via my website. 
A diminishing art
Hmm. The latest edition of the women’s writing journal Mslexia has come down in favour of writing books by hand. 
Author and workshop leader Jackee Holder reckons that the act of writing with pen/pencil and paper unleashes an extra layer of creativity. The slowness and concentration help you to focus and connect to what you’re writing. D’you think she’s right? Is that your experience?
Queen of chick lit, Jill Mansell, says she hand writes her novels … whilst sitting on a sofa with daytime TV blaring! Goodness, gracious! Queen of nothing me, I much prefer typing my stories – so much faster and easier to tweak and rearrange and cut and paste and find my way round – in perfect peace and quiet, squirrelled away in my study.
But maybe these other authors are more single-minded, not using their hands/time for all the multitude of tasks mine are grappling with. They’re certainly unlikely to be painting interminable iron railings! It has taken more-hours-than-I-care-to-tot-up of painstaking work for ours to go from pink primer to grey undercoat to black top coat (multiply the surface area you see by 2). Unbelievably fiddly and time consuming and weather dependent. We’re planning to christen them our ‘Independence Gates’ because we were working on them in the run up to, and during, Scotland’s vote on the referendum question.
Of course, I’m still writing and reading and thinking alongside the painting. Indeed tedious tasks like this offer very useful thinking/plotting time. I’d love to share my recent reading with you – it’s unexpected and challenging and uncomfortable – but I can’t because it would spoil the denouement of my current novel if you knew in advance where I’m going. Suffice it to say that some of my acquaintances will draw in their breath sharply – at the very least!
I’m also mentally preparing for a number of looming author appearance – if you’re in the Edinburgh area and interested, I’m at the Portobello Book Festival on Saturday 4 October (talking about dementia and Remember Remember), and the National Library of Scotland on George IV Bridge on Tuesday 21st October (focusing on organ transplantation and Over My Dead Body). If you come, do make yourself known to me. Incidentally, though they’re ticketed events, both are FREE! With these forthcoming appearances in mind the horrific experience of Kate Long, successful author of seven novels, resonated with me this week. Fairly early on in her career, she attended a bookclub session where members were discussing one of her novels. Turns out no one but the group organiser had liked it at all and they roundly condemned it – in her presence. What made it worse was that Kate had spent £100 and travelled 200 miles to attend the event! And she didn’t like to ask for reimbursement because the group were part of a charity. Insult to injury comes to mind. However, on reflection, since she felt nothing could ever be that bad again, the encounter actually gave her confidence. She now knew she had the inner strength to survive and acquit herself with dignity, whatever was thrown at her. Give that woman a medal for sharing her humiliation with the rest of us. That takes courage. Oh, and subsequent undisputed success, maybe, too.
To date I’ve been lucky; I’ve never encountered that sort of negativity. But maybe I should prepare myself. I’m not at all sure I should bob back as healthily as Kate.
A little bit of this, a little bit of that
It’s been a funny old week. Muddly and dotty with lots of different balls in the air. All totally eclipsed by the devastation in the Philippines, of course, but life here has to go on, so a quick resume for those who asked me to give glimpses into the life of a writer.
Biggest achievement? Finishing writing the annual Christmas story/play for the grandchildren (which they act out as I narrate). I can’t divulge any details or give you any sneaky peeks lest I incur the wrath of my family who like it to be a complete surprise on the day. But I’ve had a load of fun assembling/ordering the props, and the various costumes it requires are cut out ready for a bonanza whirl with the sewing machine. One bedroom is now strictly off limits to all.
Biggest effort? It’s Book Week Scotland at the end of the month – a week long celebration of reading; and I’ve been invited to put in an appearance (and speak!) at our local library on 28th as part of that. So we’ve done a concentrated blast of publicity for BWS and for Over My Dead Body in our area. The last time I spoke in a public library there were less than ten people there, so any advance on that has to be good.
Most warming? Contact from a lovely man in Northern Ireland, William, who’s been waiting years for a kidney transplant. He’s just read OMDB and now he’s promoting it – with such energy and enthusiasm too. It’s a particular thrill to get endorsements like this from someone who really understands the dilemmas. William’s a bit of a campaigner by all accounts, and hopefully we can work together to raise awareness of the importance of having that ‘after-my-death’ conversation. As you know, I don’t see my role as coming down on one side or the other; just encouraging people to think for themselves. If OMDB does that, it’s fulfilled its aim. Thanks, William, for your encouragement.
Most routine? Sorting and filing a stack of articles about medical ethics for possible future books. Yawn, yawn. Has to be done, though. No fairies in this establishment … or are there? Well … My lips are sealed.
But the biggest preoccupation is undoubtedly Asia and our responsibility to our fellow man. Hard to get those pictures out of your mind, isn’t it? The more we see, the greater the horror. Indescribable.
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.
Hands: new and used
Last week I was talking about over-use of my hands during interviews. This week those same hands have been in overdrive in a different kind of way: taking photos, packing picnics … pointing out landmarks, exploring history … playing games, doing girly things … all the fun that lies behind having grandchildren for a holiday. Then to cap it all, my trusty Kenwood Chef went up in smoke (literally!) after thirty plus years of valiant service, so I was back to pounding bread dough manually again. The notion of an extra pair of hands seems more than usually appealing.
Which brings me nicely to the book The Fourth Hand which I read a few weeks ago and haven’t yet told you about.
John Irving has won prizes. Big prizes. Even an Oscar. I’ve read his A Widow for One Year, and seen The Cider House Rules, so I was looking forward to The Fourth Hand. As you know, I’ve been ploughing through a minor mountain of novels about organ transplantation, and such was my confidence in Irving’s literary skill, that I reserved this one till last to savour the flow and style of a master.
But oh dear, what a disappointment, what an anti-climax. I really couldn’t find anything much I liked in Irving’s tale of a hand transplant. Briefly it tells the story of a well known journalist and TV anchorman, Patrick Wallingford, who gets his hand bitten off by a lion in full view of the world watching his news report. Far away in Wisconsin a married woman, Doris Clausen, obsesses about giving her husband’s left hand to ‘the lion man’, whilst in Boston a renowned hand surgeon, Dr Zajac, awaits the opportunity to perform the nation’s first hand transplant.
The blurb says the book ‘seems, at first, to be a comedy, perhaps a satire, almost certainly a sexual farce’ but it is ‘in the end … characteristic of John Irving’s seamless storytelling and further explores some of the author’s recurring themes – loss, grief, love as redemption. But this novel breaks new ground; it offers a penetrating look at the power of second chances and the will to change.’
Hmm, well, that wouldn’t be my summary, I’m afraid. To me the plot is flimsy and unbelievable, the characters are implausible, and to be blunt, I really didn’t care what happened to any of them. Is it likely that every woman he meets wants to fall into bed with this one-handed, immature newsreader? Would any sane woman behave as Doris did for the sake of a complete stranger and an unfulfilled wish for motherhood? Would any surgeon be as indiscriminate and absurd as Dr Zajak? I don’t think so. Of course, you would be perfectly justified in asking, who am I to dare to criticise the work of a literary giant like Irving? But regardless of my credentials, the fact remains that this novel left me cold. It took all my stubborn obsession about finishing what I start to keep me turning the pages.
But then, towards the end of the story, I found a tiny redeeming feature, a little nugget of truth that gave me pause for reflection. Doris loves The English Patient by Michael Ondaatje. Patrick has seen the movie but recognises that seeing and reading aren’t the same, so he sets about tackling the book to try to discover what it is that charms Doris. He slowly comes to a humbling conclusion, and he feels ‘like a fool’.
‘He’d tried to invade a book Doris Clausen had loved, and a movie that had (at least for her) some painful memories attached to it. But books, and sometimes movies, are more personal than that; they can be mutually appreciated, but the specific reasons for loving them cannot satisfactorily be shared.
Good novels and films are not like the news, or what passes for the news – they are more than items.They are comprised of the whole range of moods you are in when you read them or see them. You can never exactly imitate someone else’s love of a movie or a book …’
I don’t believe I was in any particular kind of mood when I read The Fourth Hand. And I’m pretty confident it was nothing to do with transplant-book overload since this is quite unlike the rest of the books on the topic I’ve read. I simply didn’t like it. It was indeed ‘personal’. No matter how many people laud this work, I cannot ‘imitate’ their emotions. Period.
After writing these comments something still niggled though, so I sneaked across to Amazon to check the reviews from other readers, and there I found a surprising number shared my reservations. Instantly I felt a kind of reassurance, which is paradoxical given what I’ve just said about reading as a subjective experience dependent on many personal factors. Hmmm, again. Am I really as confident in my opinions as I think I am?
In any event, I could still use an extra pair of hands! Oh, and I now have to read The English Patient because I’ve only seen the film.
Bigotry? Intolerance? Prejudice?
We’ve heard so much negative comment lately about people with religious beliefs being bigoted and intolerant, I want to share an entirely different experience with you.
When last year I received an invitation to run a series of workshops on the challenges of medical ethics for a group of Christians (from the Christadelphian Church) near London in March 2012, I confess I hesitated for lots of reasons. But the organisers were very persuasive, and I eventually succumbed to their flattery.
The conference was this past weekend. And I’ve survived to tell the tale.
Life has been very pressurised of late and I had a lot of baggage to shed in order to free my mind up to facilitate group work effectively. So I used the journey south to unwind, visiting two magnificent National Trust properties. The first was Fountains Abbey in Yorkshire,
with its awesome architecture and stonework, and its dramatic cloister.
Just standing surveying all this ancient beauty, soaking up the centuries of peace and devotion, is balm to the troubled soul.
And then on to Ickworth in Suffolk, very grand, housing fabulous paintings, and also steeped in history.
(SORRY: photos inadvertently lost.)
Oh, and a quick trip to nearby Ixworth Thorpe to see the house where I was born. I’ve only visited once before, taking my mother round her old haunts, and it holds no memories for me because I was a mere babe when we moved from here, but it’s part of who I am. (No plaque outside yet though, I see!)
Anyway, suffice to say I’d shed a lot of tension before arriving at the High Leigh Conference Centre, in Hoddesdon, Hertfordshire. Another lovely building looking great in the sunshine.
From the moment I introduced myself the team couldn’t have been more welcoming and supportive. The whole atmosphere was warmly inclusive. So far so good.
I had five and a half hours to fill with my workshops so that took care of most of Saturday. My sessions are totally interactive and the course they run is partly determined by the cues I get from the participants, which means I have to be ready for anything. Fairly keeps the adrenaline flowing, I can tell you! But I take a few tricks up my sleeve in case things flag.
It’s my belief that, in order to understand the enormity of the choices relating to the big dilemmas of modern medicine, and to empathise with individuals and their families grappling with such questions, you need to engage emotion as well as intellect. So throughout the sessions, as I presented increasingly difficult scenarios, the delegates imagined how they might feel in such situations (eg being infertile, or dying from a degenerative disease, or suffering from psychiatric disorders, or listening to a child begging not to have any more aggressive treatment), and they moved on a continuum from very comfortable (represented by soft easy chairs with lots of cushions) to very uncomfortable (pebbles on seats and upended chairs). There was a fence to sit on for those who couldn’t decide, and we even introduced a moral high ground (high seat covered in a velvet cloth) for the few who took up a fixed moral position.
Were these Christians bigoted or intolerant? They were not. Were their minds closed to new ideas? Not a bit of it. Were they holier-than-thou? By no means. They were impressively honest and compassionate and realistic. Yes, they live to a high standard, based on a foundation of firm principles, but it was obvious there was no party line when it came to assisted dying, abortion, infertility treatment, organ transplantation … They thought for themselves. They might not agree on the solutions, but they challenged each other healthily, respectfully. They acknowledged their own prejudices, recognised the weaknesses in their arguments, and had the courage to admit there was room for change within themselves. Every single person allowed themselves to be uncomfortable, to alter their position. We laughed a lot. Some tearfully shared painful experiences. We engaged honestly with the issues. And the world is a better place because there are folk like this who have the courage and humility to accept that there are no easy trite answers, who are ready to really listen, to understand, and to support others going through life’s traumas, without thrusting their own opinions on them.
Altogether a thoroughly enjoyable and heartening experience.
Indian proverb: Judge no man till you’ve walked a mile in his moccasins.
Different kinds of busy
I’m feeling very fortunate. I’ve recently been talking – well, no, actually I’ve been listening – to people who’ve either given or received organs. It’s all part of research for my current novel, which has a working title at the moment of Over my Not-quite-dead Body.
The emotions are still powerful years after the actual transplant, and some of the donors as well as the recipients weep as they talk. I feel immensely privileged to be trusted with their stories. But I’m also awed by their generosity. Every single one of them so far has been a busy person, involved in all sorts of activities and campaigns, and yet they find space for someone like me.
But they (as in inventors of aphorisms) do say, if you want a job done, give it to a busy person, don’t they? And that’s certainly my experience. Every time I write a book I send it out to various experts to check its accuracy and authenticity; and ‘household-names’ provide endorsements. It’s rare for anyone I approach to refuse no matter how famous and busy they are. Best-selling authors, celebrities and peers of the realm, as well as full time policemen, journalists and medical consultants – they’ve all been incredibly generous with their time. I salute them all.
Speaking of busy … Edinburgh is absolutely heaving with folk at the moment. It’s Festival time. Buses take ages to creep along Princes Street, tourists crowd the pavements blocking routes, thespians and artists of every hue vie for one’s attention. Ordinary life is hampered at every turn.
But metamorphose into a festival-goer, and everything changes! It’s an exciting place to be. I’m slotting in events here and there in between doubling as a waiter/cook in a charity café run by our church this week. (Will my feet ever be the same again?) We’re collecting for Village Water Zambia this time. The very idea of relying on scoop holes in the ground for all your water, the disease, the infection … makes you shudder just thinking about it.
The monologue: An Evening with Dementia, I told you about was superb. Poignant as well as humorous. So much truth conveyed so artistically. It certainly rang true for me.
– Yes, people do use unspecific phrases and words to cover holes in their memory. (My mother can still dredge up an occasional bright smile and ‘Hello, dear’. Chance visitors tell us encouragingly, ‘Oh, she knew me instantly.’ But we, the family, know better than to confuse a reflex cover-all reaction with genuine understanding.)
– Yes, there is a fine dividing line between reality and imagination. (The actor peered at us and debated with himself whether we were actually a real audience, or he was inside the virtual theatre of his mind. And I see this doubt sometimes in the eyes of a friend I spend time with.)
– Yes, we all need to be more aware of how we react and speak; people with dementia can be aware at all sorts of levels. (He summed up humbug and obfuscation from relatives and staff perfectly.)
Well worth a visit if you’re in the capital.
And I’m just back from the Book Festival listening to Candia McWilliam. She’s a novelist (she describes herself as ‘intensely Scots’) with a colourful past who’s won several awards herself and judged the Man Booker Prize. The process of judging involves reading about 120 contenders for the title at a rate of about a book a day. No wonder, you might think, that after a while she had to force her eyelids to stay open with her fingers. But this was no normal fatigue. She had developed a condition called blepharospasm, where the brain instructs the eyes to close, though the eyes themselves are working perfectly normally. By the time of the Booker Prize evening she was ‘functionally blind’. After conservative treatments failed she had surgery to insert tendons from her leg to peg her eyelids to her eyebrows. Her book, What to Look for in Winter
is both a literal and metaphorical journey through not only physical blindness but also the experiences of alcoholism and betrayal of her second husband.
I didn’t dare ask a question, though I was wanting to. It was stressful enough watching others silenced by a quelling one-liner! Unusual in the Book Festival where authors tend to bend over backwards to make what they can out of any question that comes their way – even the ones about inspiration and technical process and why-did-you-write-this-book that they’ve answered a thousand times before. Not this lady!
But that aside, tonight it was a particular treat to just sit still with nothing more demanding to do than listen. My joints and legs have unilaterally decided that the sedentary life of a writer is a doddle compared to the life of a waiter. Well, it’s a different kind of busy. And I’m certainly not complaining. What’s a measly week on my feet all day compared with a lifetime of feeding your children contaminated water from a scoophole?