organ donation
The Story of a Heart
The exquisite engineering of a beating heart has yet to be matched
by anything built by human hands
Eight months ago I wrote about Dr Rachel Clarke narrating the story of a young girl, Keira Ball, involved in a devastating car crash in the Westcountry, whose heart was given to a 9 year old lad, Max Johnson, in the north of England.
I’ve just been readiing the book from which those extracts were taken: The Story of a Heart. It has been reviewed in glowing terms:
Rachel Clarke is a physician who is also an uncommonly good writer.
Profoundly moving and at the same time wildly inspiring. A beautiful humane book.
This unconventional narrative biography fizzes with respectful, indefatigable and eloquent respect for life.
This is the most beautiful and riveting book: written with such humanity, empathy and knowledge, such tact and drama and eloquence.
And it’s all of those things. The author personally interviewed the families and a number of the principal players in the evolving drama, and the resulting poignant narrative takes us inside their lives, their thoughts, their actions, bringing the whole experience vividly to life…
…the vivacious active Keira, riding her beloved horse, giggling with her sisters, enchanting everyone with her radiant smile. Now, after the accident, still outwardly a beautiful unblemished little girl with golden curly hair and a perfect child’s face, radiant with the promise and potential of youth … luminous. … She looked so perfect, not broken at all.
…an underweight, ashen-faced Max, with huge eyes and white blond hair, his massively enlarged heart making even breathing a struggle, the prospect of simply not waking up at times more attractive than this precipitous decline.
…the essential aloneness of Keira’s dad, Joe, with no one to share the full unravelling horror of his youngest daughter’s prognosis, the awful consequences, the momentous decisions, because his wife is still unconscious in an adult ICU following the accident.
…the courage and brisk approach of Keira’s 11 year old sister, Katelyn, so utterly confident Keira would want her organs donated. Yet, subtly checking the heart below her hand on her sister’s chest; watching for the least sign of sentience while the doctors test for brain stem function.
…the mounting horror for Max’s parents hearing the scary diagnosis and grim statistics relating not just to his current medical condition but also to the risks associated with heart transplants, success rates, life expectancy, prospects of comorbidity.
…the impact on staff –
the ICU nurse receiving Keira into a small rural hospital in Devon;
the radiologist scanning her brain intimately, confirming unequivocally that all mental activity has ceased;
an unnamed compassionate nurse tucking a teddy, soft and cuddly, in beside Keira’s inert and unresponsive body.
…the harrowing moments for Loanna, Keira’s mum, being wheeled from the adult ICU where she is still recovering herself, to spend uniquely precious time with her little girl for the first and last time.
She was absolutely broken.
…the reverential moment of honour while a theatre full of staff pause to pay tribute to this small person who is giving incredible gifts to other desperately sick children around the country.
…the silent and lonely vigil of Joe, watching from the shadows as his daughter’s precious organs are loaded into a fleet of four ambulances to be driven to the recipients.
He has chosen, simply, to bear witness.
…the surgeon calmly dealing with a powerful arc of blood from an unexpectedly severed artery in Max’s chest while he is disconnecting the damaged heart, the minutes of viability of the new heart ticking inexorably by.
…the abundance of invisible kindnesses that prepare Keira’s body ready for her family afterwards, restoring her from surgical donor back to cherished human being. All the rituals signifying You are loved. You mattered then, and you matter now, and you will matter always, and forever.
A fusion of pharmacology and engineering has kept the little girl in a kind of limbo, and her organs in an optimal condition; and then maintains that foreign body functioning in the chest cavity of an unrelated young boy. But the language of medicine, though relentless in its detail, omits certain facts. In so many significant ways, Rachel Clarke has captured these softer aspects of dedicated care and respect for life, whilst not neglecting the science. Alongside the personal story of Keira and Max, she weaves in medical information and historical precedences. She pays tribute to those past and present who together have made the miracle of this shared heart possible. And she occasionally dips into the deep ethical questions of the status of patients whose brain stem has ceased to function: are they being kept alive by ventilators or are these machines pumping oxygenated blood around corpses? What defines the essence of life?
It’s a masterpiece, richly deserving of all the accolades and awards it has received.
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.
Sardinia
Taking a break in Sardinia – deemed one of Europe’s most beautiful islands and certainly a haunt of the mega-rich and super-famous apparently. Who knew?
I neither arrived in a massive yacht nor flew in on my personal helicopter, but I can enjoy the same beauty and wallow in the same clear turquoise water, and probably dream up more exciting fictional stories set in this wonderful location to boot!
On my second novel dealing with organ donation too – reading not writing I hasten to add. This is the life!
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.
Challenges and choices
The International Arts Festival is currently in full swing in our fair city, and it’s easy to get caught up in the exciting momentum of events and performances. Guilty as charged. 
But of course, for many, far far more serious questions beset them than which actors, writers, musicians or artistes to support. I currently have six special people on my worry/prayer list all facing major challenges in relation to their health, life and death.
It’s not appropriate to be specific about them, but perhaps they are behind my extra sensitivity to the difficult choices so many face. For this post I’m thinking of those people who’re involved in the consequences of legal change, medical advances or financial restrictions associated with healthcare – my kind of workaday world. I’ll enumerate but a few (with links) reported in the national press in just 36 hours by way of illustration. All raise a number of thorny issues and I leave you to ponder those for yourself.
Relatives and health care workers caring for patients trapped in unresponsive bodies with minimal or no consciousness no longer need to go to court to resolve the question of withdrawing/withholding life sustaining measures. Decisions about dignified death can be made quietly and privately in a timeous way.
In figures released last month, the first trial of a pioneering immunology vaccine called DCVax has shown some real promise. DCVax essentially uses the patient’s own immune system to fight the tumour, tailoring treatment to their specific needs. This trial has already been running for 11 years and came to public attention when MP Dame Tessa Jowell was not eligible to receive DCVax for her glioblastoma. Sadly she died in May, but not before she had successfully campaigned for increased funding for brain cancer research. To date patients have needed to stump up £200,000 for this treatment.
New National Guidelines, known as Saving Babies’ Lives Care Bundle, have been issued in response to the alarming statistic that 600 babies could be saved from stillbirth annually if the mothers were adequately monitored. SBLCB focuses in on the incidence of smoking, signs of failure to grow, reduced fetal movement, inadequate monitoring in labour – risk factors that were all known about decades ago when I was in clinical practice. Given that 3000 babies are stillborn every year in England alone this seems like an important area to concentrate on.
ASDA has apologised for selling a pregnancy test that issued false results leading a young woman in Devon to believe she was pregnant when she wasn’t. However the store has not recalled this product and insist it has been quality tested.
One in five people who have eating disorders have their lives cut short, but a considerable number are turned away from help because they are not skinny enough. And this in spite of National Institute of Health and Care Excellence guidance to disregard body mass index. (I found this to be true when I was researching Inside of Me.) A campaign is now underway to ensure the NICE guidelines are being adhered to.
News at the end of July was that more than half of Scotland’s population have pledged to donate their organs and/or tissues after death. That’s the highest rate in the UK and comes after a high profile awareness campaign. It’s good news for the 550 or so waiting for transplants and a significant factor in the discussion about whether we should change to an opt-out system, currently under review. Interestingly 90% of the population support organ donation, so one wonders about the mismatch.
I could go on but I promised just a brief snapshot. But I’m doing my best to keep perspective during my annual summer sortie into the world of drama and art.
Ethics in the news
Every now and then I like to give you a glimpse into the world of medical ethics that continually fires my imagination. Just since I wrote my blog last week we’ve had the following stories in the media – apologies in advance, the list grew and grew as the week went on! See what you think about them? Do you have any simple answers? What would your solution be? Where does your mind travel? I’ll give you links so you can find out more about any of the cases you’re interested in.
A grandmother has given birth to a surrogate child for her single son in his mid-twenties using his sperm with a donor egg. A judge has ruled that, though unusual, the arrangement is entirely lawful. But … is it ethically acceptable? Who is brother … father … mother …? What about sixteen years down the line? My mind goes into overdrive. How about yours?
Zach Parnaby is 20 months old and his family are already working down a bucket list of his favourite things before he dies. He has Krabbe Leukodystrophy. A pinprick screening test could have detected the disease soon after birth, giving them the option of a bone marrow transplant, but his parents were told it isn’t done for cost reasons. Is this reasonable and just? What price would you put on a child’s life? How would you juggle competing demands for limited resources?
Sarah Marquis is a 41 year old lawyer specialising in white collar crime. In 2008 doctors failed to spot that her appendix had burst and she was rendered infertile. The hospital have admitted liability but their lawyers are insisting that she deserves less compensation because she has been free to pursue her career without the breaks necessary for child bearing. Is this appropriate and fair? What if she went on to have a child through IVF … ?
17 years ago Zephany Nurse was stolen from her sleeping mother’s arms. But now, by a coincidence, she has met up with her biological sister and been reunited with her birth mother. Her abductor, whose own child was stillborn, apparently cared for her well, and this week we heard that Zephany refuses to testify against her. Should the woman be allowed to go free? Who do you think should best occupy the parenting role?
From this week Canadian patients will be allowed to ask their physicians to help them end lives that have become burdensome to them. Their Supreme Court ruling was unanimous. Do you agree with them? Should the UK follow suit, d’you think?
Seven years ago an NHS consultant had a malignant growth removed from her thyroid gland and was discharged home the following morning, even though she was already showing signs of a dangerously low calcium level in her blood. However her medical knowledge told her she was in big trouble and she dialled 999, saving her own life. She has just been awarded a six figure sum by the hospital trust who admitted liability. How would this have all panned out if she’d been your average ordinary Joe Bloggs?
A US study has found that hard physical work damages a man’s sperm. So …? Does this give men the right to refuse to work on the grounds of their human rights? This could get interesting!
A proposal has been made that seriously ill patients could be offered organs from high risk donors (eg. cancer patients, smokers, the elderly or drug users) to help address the chronic shortage of available organs for transplant. Let your mind ramble over the possible scenarios of this in terms of the possible donors … Would you accept second best … for yourself? … for the person you love most in the world?
The NHS has just launched a controversial online calculator. It’s said to predict when someone will have a heart attack or stroke. Hello? Would you wish to be told that? Would you alter your lifestyle to prevent it? Would that negate the prediction? A couple of days later we’re told that ‘two families will be the first to receive personalised care based on their DNA as part of a national plan to sequence 1000,000 genomes.’ Is this science fiction coming true? Or a utopian dream? Where will it lead?
Back to the humdrum everyday … A survey of more than 1000 cancer patients has found that 1 in 10 is left unwashed, undressed or untoileted because of a lack of careworkers. And we all thought cancer was high priority; it was the elderly who were neglected. But then we hear that 26% of councils in England failed to properly consider the needs of people with arthritis, and 66% failed to consider back pain – conditions which affect 7 million people in England and account for £5 billion of NHS spending. What do these studies say about the allocation of resources and priorities? Oh, but hey ho, on the same page … scientists have found a class of drugs that dramatically slow ageing … in mice at least. So is this where the money will go? An elixir of youth? Ahhh, wait a wee minute … plans are in hand to build the UK’s first proton beam therapy cancer treatment centres in London and Manchester. Just who is deciding how and where the money is being allocated here? And if you were in charge …?
Still with resources … As from this week 16 very expensive drugs which have been clinically proven to increase the lifespan of terminally ill patients, are to be removed from the approved list of the Cancer Drugs Fund, as announced in January. Imagine your beloved was dying prematurely … Is it possible to reduce the well-being and hope of any family to pounds and pence? Should drug companies be allowed to raise obscene amounts of money from the tragedies of others?
Ex-serviceman Chris Graham is 39. He has a 6 week old baby. He also has early onset dementia. It’s in his genes. His brother has it; he’s 43 and totally incapacitated and dependent on others. Their father, grandfather, aunt and cousin all died of it in their forties too. Chris might have passed it on to his baby son. At what point should a halt be called to this perpetuation of tragedy? Should it ever? What if scientists modified the family germline …?
These news items were all reported in just one week of the year – a mere 7 days. They’re the kind of clippings that find their way into my ideas folders because they set my brain asking, ‘What if …?’. ‘Supposing ….’ ‘Would this be believable?’ Trouble is, my brain has a finite capacity … and shrinking! And there simply isn’t time to turn all these possibilities into stories.
(NB. For the purposes of this blog I’ve made no effort to pursue the facts behind these stories; I’m just sharing what anyone might know from the papers.)
Moral obligation
Every now and then something crops up that challenges my thinking on ethical issues, and I’m reminded all over again that these questions are always evolving and it behoves me to stay on my toes and constantly revisit them.
This week it was a half day seminar on ‘Leaving your brain to science: Engaging with law and ethics’, organised by Edinburgh University. Now, although I’ve been immersed in the subject of organ donation for the last few years, as you know, I hadn’t explored giving the brain specifically, so I was intrigued to know what would emerge. I won’t bore you with the details, but I’d like to share something of the workshop that concluded the day.
It focused on moral obligation. We were given a collection of possible actions which might be of benefit to others and asked to rank them in order. At one end was ‘MORAL OBLIGATION’ which essentially meant the action is of recognised benefit to others with very little risk to oneself, making it something where there is a high level of obligation to carry it out (eg. on finding a fire one should summon the fire brigade). At the other end of the scale was ‘MORAL SUPEREROGATION’, meaning that the action might well be deemed praiseworthy, but it carries risks of such an order that there would be no obligation to do it (eg. rushing into a blazing building to rescue someone); it goes way beyond what might be considered a duty.
The actions to be ranked were:
Live organ donation
Cadaveric organ donation
Egg donation
Sperm donation
Giving samples of tissue for research
Bone marrow donation
Donating the brain for research
Blood donation
Why don’t you try it yourself? Weigh up the potential benefits and costs and see where you feel a sense of duty/moral obligation takes YOU. You might well be surprised – as I was – at where ‘giving your brain after death‘ comes.
Book Week Scotland
Well, that’s Book Week Scotland over for another year, and my own part in it was great fun.
The library was looking very colourful with rainbow posters and plenty of displays and the librarian somehow managed to offer everyone who came a hot drink as they arrived – a lovely touch on a cold dark November evening. I was talking about Over My Dead Body and organ donation, and the audience were brilliant – very engaged with the practical and moral issues as well as the literary ones. I threw out a few challenges during my introductory talk and the responses came thick and fast in the open session. It always gives me a real buzz having folk talking about the topics in my books. – in this case, about the difficulty of giving eyes … about the difference between donating one’s own organs compared with those of your child … about cellular memory (where people believe characteristics of the donor are passed on through the tissues) … about who should or should not get organs …
I learned afterwards that there were several nurses in the audience but they kept a very low profile. However, one man who’d had an organ transplant himself, bravely shared some of his thinking and experience in open debate. Fantastic. And one-to-one discussion continued over the book signings which always pleases me. It’s lovely to actually meet the people who read my books.
Thanks everyone.
As I post this blog there’s a ferocious storm raging across Scotland so stay safe out there.
Topical stuff
I know my antennae are always tuned to pick up the merest sniff of medical ethics but this week has been a veritable bonanza in the media. Would these headlines grab you too, I wonder? Do the questions trouble you?
The controversial Liverpool Care Pathway, for example. Designed to ease the final hours or even days of a terminally ill person’s life: is it being abused? The son of an elderly woman who died in an Edinburgh hospital thinks so. He has accused her doctors of ‘murdering’ her, and the newspaper headlines certainly make the case sensational. At the moment the circumstances are being investigated by the Scottish Fatalities and Investigation Unit, and if anything suspicious is found, it will trigger a police investigation – the first relating to an individual death to be officially dealt with in this way. How do you feel about the LCPathway?
Then there’s the major news that this country is set to become the first in the world to approve the creation of so-called three-parent babies – a way of allowing couples with major defects in their mitochondria (the bit around the nucleus that contains around 37 of the total 2,000 genes) to have healthy children who don’t die young. What a stooshie that’s causing! And that’s in spite of the fact that it’s the nucleus that carries all the genes for looks and behaviour. And you’re saving babies and parents terrible suffering and distress. Ah yes, BUT it’s genetic modification on human beings, with permanent results for generations to come. And the nucleus and mitochondria don’t operate in isolation; they talk to one another. And the mitochondrial cells control metabolic functions. Who knows what you might be unleashing … and unable to reverse. How say you?
Thousands of miles away there’s another scenario playing out that currently has the media here in a frenzy. 94-year-old Nelson Mandela is on life-support machinery. The world reveres this man. His countrymen are fervently praying for his recovery. He has six children, 17 grandchildren, and 14 great-grandchildren, who are riven by disagreements and conflict at a time of private sorrow. Decisions about allowing life to end are notoriously difficult – in this case they are set against a nations’ wishes, cultural diktats, family feuding, in the full glare of the media’s eyes. Who should decide? What should they decide?
Rock guitarist, Wilko Johnson, (real name John Wilkinson) is dying of cancer but he’s been inspiring millions with his up-beat approach to the life he has left and his sheer humanity. He had no idea apparently until he saw so much emotion at his farewell concert, that people felt a real personal affection for him. He knows cancer intimately – his wife, his mother, and co-founding member of Dr Feelgood all died of it; he has no faith to sustain him; and yet, in many ways he says, he feels more alive than ever, and a special joy in existing, because he knows every day is special. How would you respond?
Speaking of cancer … should companies be allowed to put a copyright on the genes that cause the disease? Myriad Genetics patented the two major breast cancer genes, BRCA1 and BRCA2, even though the search for the genes was a collaborative effort by thousands of scientists, many of whom were publicly funded. The firm also holds European patents on tests for the disease. In practical terms this means that the UK might be at risk of infringing copyright laws (with all the consequent lawsuits and outstanding royalties) with their own tests using publicly available genetic data. When Angelina Jolie revealed her double mastectomy, she drew attention to the cost of genetic testing (in the region of $3,500). What do we in the UK with our free-at-the-point-of-need NHS make of all this? What do you think?
I could go on, with this week’s tales of and life-and-death decisions being made over the phone;
and Wales approving a system of presumed consent for organ donation, oh and altruistic organ donation (in journals and weekend supplements); and … but I won’t. Your brains are probably crying out for rest after the questions I’ve already thrown into your court.
By way of light relief, in between all this heavy-duty thinking, and working on the publication of Over my Dead Body, I’ve been reading Melisa Hill’s Before I Forget. It’s about a girl whose memory is destroyed in an accident. From the blurb it sounded to be close to my interests, so I picked it up in a supermarket. But … oh dear. Not my kind of thing at all. Style of writing, plotting, characters – I wanted to edit everything. And yet she has THE NUMBER ONE BESTSELLER plastered over the cover. She’s published by one of the big firms: Hodder. Ho hum!
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.