Abstract
I think the reason why I write novels about medical ethical dilemmas properly stems from something that happened 38 years ago.
A life-changing experience
In March 1971, I sat across the desk from a consultant paediatrician watching his mouth frame the words that told me my baby of three weeks wouldn't live. Two days later that same doctor told me that they had no idea how my son had survived thus far, he had no scientific explanation to offer, but … well, unfortunately that now meant this same little boy was destined for a life of both mental and physical disability.
In the 1970s parents weren't consulted as to their wishes, but I vividly remember praying that if indeed that was his destiny, my son would die sooner rather than later. Had I been part of the decision-making team my vote would have deprived our family of a much-loved son/brother/father who, incidentally, is totally normal both mentally (first class honours degree and PhD) and physically (rower, photographer and general all-rounder).
Two decades later
For many years that experience remained quiescent, but about 20 years ago I began to discover it had the power to open a number of doors that would otherwise possibly have remained closed. As a researcher I was investigating the way mothers learned to care for their very low birthweight infants after a prolonged period in a neonatal intensive care unit (NICU). 1 I found my own personal experience helped respondents identify with me as a mother who understood and indeed shared something of their emotions; someone to whom they could talk freely.
Some years later my story helped me again when I interviewed parents whose babies were the subject of decisions about whether or not they should be treated. 2 I was someone who knew first hand about the weight of responsibility, the influence of history, beliefs and value systems; therefore, someone with whom they could share their innermost thoughts and emotions safely.
Use of narrative in teaching
I also learned the value of stories when it came to teaching ethics. It's traditionally a fairly dry and jargon-laden subject, and there are few absolutes. Options, choices and solutions depend on many factors. As Mary Warnock put it: ‘Ethics is a complicated matter. It is partly a matter of general principles, or even rules, like those of manners; but largely a matter of judgement and decision, of reasoning and sentiment, of having the right feeling at the right time, and every time is different’. 3 But in general, people prefer neat, logical, black and white answers; greys can be unsettling. Sharing how close I had come to making one of the biggest mistakes of my life, gave those I taught scope to feel more comfortable with their own doubts and uncertainties. Together we could explore our fallibility and work towards a more empathetic understanding of the dilemmas that characterize medicine today.
But my experience was essentially just another case study. And as health-care professionals we are well used to listening to patients' stories. They may be tangled and fragmentary, troubling even, but they give us insights into the patients' perspective, and they make excellent material for teaching purposes. In my experience, students would far rather hear about how Mrs Jones in bed 6 asked her doctor for a lethal dose of ‘something painless, dear’; what the doctor said; what she should have said; what she did next; than about the theoretical notions of autonomy, beneficence and justice disconnected from real life. And I think they learn the lessons of ethics at a different level.
Fact to fiction
So with this wealth of lived experience at our fingertips, why move to fiction? It was a flamboyant young forensic pathologist and a wonderfully intuitive neonatologist who first gave me the idea. Both were lecturers on ethics courses. Both were inspirational teachers. Both managed to draw medical students into hypothetical situations with consummate ease and to astonishing effect.
The pathologist would stroll into the centre of the auditorium, scan the faces of the students and begin: ‘You were out partying a few weeks ago. Marking the end of exams, as students do. I know, I was one myself many moons ago. You had a bit too much to drink and, well, one thing led to another, and now you've missed your period. You've just done a pregnancy test and yep, it's positive. But hang it all, you've only just finished your second year of medicine. This is no time to have a baby …’ You could pretty much feel the morning sickness surge through the ranks. And off he'd go exploring the issues of abortion and on into assisted conception, and with each response from the students, inch them further away from their comfort zones.
The neonatologist would start with facts; he'd outline a difficult case. Then he would swing round to one of the unsuspecting students and say, ‘You're the junior doctor on duty that day. Mum isn't a happy bunny. She collars you during the night and wants to know what you're going to do about her baby's problems. What will you say to her?’ Having extracted a stumbling reaction he'd then turn to another student. ‘OK, you in the pink shirt. You're the consultant. What're you going to say to that?’ The suddenly-elevated student's ego is flattered. He offers an alternative course of action. The lecturer challenges the whole auditorium. ‘How many of you think he's right?’ He pounces on one of them to justify his position. Then someone who disagreed is put on the spot to explain his opinion. The story unfolds further: ‘Ah. But here's granny. She's a retired midwife and she's got a different take on this altogether.’ Every eye is on that anxious but experienced ‘granny’. How will she react? And most of them are already preparing for when that finger points in their direction, raking through the consequences of their own opinions.
Students who'd dosed off in earlier sessions giving them sound theoretical foundations came alive in these amazing exchanges. They were clearly deeply affected by the challenges their teachers threw at them (whatever they said) and, by empathizing with opposing points of view, they learned salutary lessons for life and medical practice. Discussion of the issues continued long after the allotted hour.
The value of stories
Teaching sessions, conferences, seminars … it was always the same. Stories captivated; stories engaged hearts as well as minds; stories challenged as well as entertained. Straying into fictitious but realistic scenarios allowed teachers to elaborate on the truth, weave in other provocative opinions, other value systems; retaining the credibility and authenticity, but broadening the challenge.
My idea was conceived. And the more I observed audiences the more convinced I became that, though excellent texts in the field of medical ethics and law abound, there was a need for a lighter form of material, something that would grip the attention. I wanted people to get close to the reality of families grappling with the dilemmas presented by modern medicine, to understand the conflict, to care about the solution. Of course, a search of the literature soon revealed that this idea wasn't really new. From practitioners whose own experiences had given them insights and sensitivity (e.g. The Wounded Storyteller 4 ) to experts in narrative medicine (e.g. Professor Rita Charon, Professor Brian Hurwitz), to journals expanding on these thoughts (e.g. Medical Humanities), others have reported and analysed the role of stories in the art of practising medicine. As Rita Charon summarized, ‘narrative competence, that is, the competence that human beings use to absorb, interpret and respond to stories … enables the physician to practice medicine with empathy, reflection, professionalism and trustworthiness’. 5
My novels
The basic idea was simple; executing it less so. My first novel was written in a hurry and I lived to regret it. I'd love to edit it knowing what I now know about creative writing. But a window of opportunity presented when I was working as Deputy Director of Research in the Institute of Medical Ethics and it would not open again. I submitted a research proposal for the project mentioned above which would involve interviewing doctors and nurses working in busy NICUs about their experience of, and opinions about, treatment withdrawal from very ill neonates. If I were ever to write a novel on this subject it had to be before I began data collection for this research; afterwards, no matter how scrupulous I was, I might be accused of misusing the information I had received. So while I waited to hear if my proposal was to be funded I wrote … furiously.
I sent the manuscript of Ring of Trust to a publisher (Books for Midwives Press) whose MD described himself as a publisher with a soul. Having wept reading it himself he sent the manuscript out for review accompanied by a packet of tissues! The critics liked it, he accepted it, it was published (as Holding On? 6 ), and, to my astonishment, quickly became a set book on degree and professional courses. But best of all, and quite unexpectedly, lay people contacted me. One mother of a stillborn baby rang to say she was just reading it for the third time: it was the only book she'd found that made her feel someone really understood her emotions.
All positive feedback. It was more than fulfilling my criteria … but I wasn't happy. I knew it could be better. As Ian Rankin once said, the reason one goes on writing books is because the last one wasn't perfect. I realized my years of writing academic papers and reports were inadequate preparation for producing fiction. So I enrolled on a creative writing course, with The Writers Bureau, learning techniques for everything from food reviews and newspaper columns to plays for radio. Excellent discipline and great fun.
Maintaining momentum
Ever since the principle of writing novels had been conceived, I'd been amassing articles, newspaper columns, ideas for plots, anything that might inform a story. There was certainly no dearth of material. I had about nine folders ongoing. My obsessive tendencies, honed throughout my research career, were revealing themselves yet again.
The same innate traits led me to take three further steps to provide solid foundations for each book. Although the novels stand alone I decided to offer educational material for those readers who wanted to take their thinking further, but it was important that the facts did not become outdated. To that end I created a website that lists useful sites for further information and provides questions to promote further discussion (
The problems
As Fay Weldon (in her endorsement of Paternity 7 ) and the BMA 8 have both acknowledged, these novels are a new genre of writing. I foresaw problems. Where do they fit? I might have problems finding a publisher, getting them onto the right shelves. I was also aware from the outset that I had to balance the educative elements with the entertaining; the comprehensiveness of the ethical dimension must not detract from the readability; the serious issues must be lightened with humour. I worked at letting the characters speak for themselves, follow their own paths and reach their own conclusions, reserving the more esoteric elements of medical ethics for my website. And before submitting the manuscripts to publishers, I gave them to a range of lay as well as professional readers to critique for any imbalance. Contrary to my expectations, lay critics told me that the ethical musings appealed to them. This was what made the books so different, and the stories both lingering and challenging, they said.
But for about seven years after Holding On? my academic life swallowed me whole. I was, after all, completely immersed in real life tragedy. There was little time or emotional space for writing novels about other troubling ethical issues. I kept the folders stoked but left the ideas simmering on a back burner.
The turning point
It was the completion of a book about the bereaved parents' experiences and opinions, Crucial Decisions at the Beginning of Life, 2 which led to my moving properly into creative writing. I knew I could never do anything to better that study. Thanks to the incredible data provided by 108 courageous parents, the results were receiving international recognition and the full report was voted BMA Medical Book of the Year 2002. I had long ago resolved to leave academic life with a bang not a whimper; this then was the time to make that leap from serious researcher to novelist.
By 2004 I had three manuscripts written: Vacant Possession (about proxy-decision-making for patients unable to decide for themselves); 9 Paternity (about the ethics of sperm donation) 7 and Double Trouble (about surrogacy). 10 Where to publish them? I sought advice. Professor (then Dr) Ann Sommerville, head of ethics at the BMA, put me in touch with Professor Brian Hurwitz, an expert in narrative medicine at King's College, London. He liked the idea in principle. He read the manuscripts. He was enthusiastic. I was aware that the publisher of Crucial Decisions was interested in moving more into the humanities, so we decided to approach Radcliffe Press together. Their commissioning editor agreed to take a gamble with the novels, provided that Brian be listed as series editor to give them gravitas and kudos. I was happy with that idea, and Brian was invaluable in getting endorsements from eminent figures (Raanan Gillon, Geoff Watts, James le Fanu, Alexander McCall Smith, Fay Weldon), reviews in prestigious places, and an invitation to participate in the Brighton Book Festival. Courageously too, Radcliffe also decided to launch the series by publishing the three books simultaneously. After a long wait I now had four published novels.
More hazards
Unfortunately though, things did not go according to my personal plan. Publishers have their own agenda, their own ideas. And Radcliffe was essentially a medical publishing house with the infrastructure to support medical texts. The rules and procedures are tried and tested. But … fiction writing? Are there any goalposts? If so, they are definitely movable. I had to bow to Radcliffe's knowledge of the market and the publishing process, but in my judgement, my finished novels looked too much like textbooks; were too expensive; and needed to be marketed outside the medical world. In the end both sides knew that sales just were not meeting expectation, theirs or mine.
I revisited the old questions. What was my unique selling point? What gap was I trying to fill? I knew that there were novels out there which included topics such as euthanasia, cloning, abortion, organ transplant; I had a list – a growing list – but none dealt with the subjects in the way I did. In the majority of them the issues were peripheral. So, what exactly was I trying to do? Write a story that would hold attention, offering entertainment while at the same time being medically authentic and accurate. Embedded within the novel would be different perspectives on the ethical issues around each subject, and readers would be subtly challenged to revisit their own opinions and prejudices.
I approached trade publishers with the fifth novel, Right to Die (dealing with assisted suicide). 11 Luath Press liked the book sufficiently to sign me up for three new novels. I naïvely thought my problems were over; I could just sit back and write. It's fair to say that Right to Die has brought unexpected successes – from a slot in the Edinburgh International Book Festival with Baroness Mary Warnock, 12 through being shortlisted for a prize in the BMA Book Competition this year, to repeated mentions in the Big Issue! I've written newspaper articles and been interviewed on radio because of it. But new genres aren't easy to promote. We are still working on improving sales and distribution. And I've learned the hard way that publishers today have limited budgets and resources for marketing and I have to promote the books more myself – something that I find distasteful.
Conclusion
In spite of the vagaries of the publishing process, I still believe in the value of novels in this area, ‘bringing ethics to life’ (Foreword in Vacant Possession 9 ). Feedback has been positive and reviews encouraging. I'm as enthusiastic as ever about the writing side of what I do. The next novel, Remember Remember (about Alzheimer's), is due out early next year; the seventh (about saviour siblings) is completed; an eighth (about organ transplantation) is in progress.
There is no shortage of subject matter. The original nine folders have grown to over 20. Pick up any respectable newspaper and you'll almost certainly find something about medical ethics in it. It's a subject that holds endless interest and appeal, and all of us are touched by it in some way. But not all of us are as sensitive and understanding as we might be about the impact of modern medicine on patients and their families. Luath Press and I are still committed to filling this niche and exploring new ways of reaching readers, both professional and lay.
Publishing details as above. ISBNs:
Vacant Possession * 1 85775 651 7
Paternity * 1 85775 652 5
Double Trouble* 1 85775 669 X
Right to Die (10) 1-906307-21-0 (13) 978-1-906307-21-9
*Until reprinted, only available directly from Luath Press