The textbooks that I used as a medical student in the 1990s were illustrated with photographs of real patients. I can vividly recall the images of three depicted patients, stripped naked, standing with their palms facing upwards, posed with their hands by their sides and feet shoulder width apart like Leonardo Da Vinci’s Vitruvian Man. These memorable portraits demonstrated the outward appearances of Turner’s Syndrome, Kleinfelter’s syndrome and acromegaly. Each patient had a black rectangle over their eyes, a token of anonymity that left them recognisable. Recently, and for the first time in many years, I thought of these three textbook patients and how the violation of their dignity had upset me, when I received an invitation from a medical journal to: “Please open with a vivid and compelling short story of a patient encounter.”
Why did my mind make this leap? Nobody was asking me to strip any patients naked or obscure their eyes. Asking for a clinical anecdote is a common enough request within medicine. Doctors know this drill. These brief vignettes give colour to lectures, lend sparkle to seminars and offer useful hooks for medical education. As doctors, our ears become attuned early to vivid clinical micro-dramas that are told to illustrate a clinical conundrum, a challenging moral dilemma or a moment of searing inequality. The appeal of these short stories is plain. Clinical educators use patient stories to make a generality specific, so that the lesson sticks in our minds, ready to be recalled in similar circumstances or to promote an immediate change in practice. But recently, I have started to wonder: when we change a few patient demographics in order to share clinical encounters, are we doing our patients the same disservice as was done to those patients posing in textbooks, with their eyes obscured? Does this risk adding shame and stigma to communities already disadvantaged by the power asymmetries that often accompany medical hierarchies?
It’s an ethical dilemma. Whether we view the dilemma in terms of our moral values, or from the vantages points of clinical culture and medical educational perspectives, ethics are subjective. The phrase primum non nocere, first do no harm, dates from the seventeenth century. There is an argument to be made that this is an impossible ideal in contemporary Western medicine, where every intervention comes with adverse effects and risks, but nevertheless, it’s a useful reference point on the medical moral compass.
Are there circumstances in which doctors can write about patients without harming them? Isn’t that what consent forms are for? I’m starting to question the orthodoxy that says we can obtain ethical and meaningful consent from a patient for a clinical encounter to be widely shared for medical education purposes. The power differential is vast and the social pressures to be a good patient and please doctors by agreeing to requests are difficult to overlook. Patients are not props for medical education or journal articles.
Three recent medical memoirs have overcome this ethical conundrum by writing fiction. In her Wellcome Prize winning medical memoir, It’s All in Your Head, Susanne O’Sullivan, describes fictionalised, rather than actual, cases with medically unexplained neurological symptoms. Former journalist Rachel Clarke similarly describes her experiences as a junior doctor in Your Life in My Hands, through fictional patients. In Christie Watson’s Costa Award winning memoir of her nursing career, The Language of Kindness, Watson not only fictionalises patients, but colleagues as well.
And yet, medical knowledge is built through experience, including the vicarious experience of colleagues. When writing about a clinical encounter to educate our peers, which details do we change? If the point of my story is to illustrate racist biases, can I ethically change my patient’s race to make her unidentifiable? When the focus is a rare diagnosis, can I change enough demographic details to stop a patient recognising herself, without eroding the clinical lessons? What pedagogic insights do we lose, when we edit, embellish or make patients up? Is the subplot of these stories to provoke, to entertain or to thrust ourselves into the spotlight?
I’ve been grappling with these questions while writing a memoir about my experiences of recurrent miscarriage while working as a medical expert witness. In an attempt to resolve ethical dilemmas, I’ve been writing fictional patient encounters, while also encouraging a group of second year medical students to learn through writing fictional short stories. This practice created its own conundrums. How do I write a fictional patient encounter that is pedagogically useful, medically ethical and doesn’t centre my story, but the (fictive) patient’s? What happens when medical education, based on trust and confidentiality, educates by exchanging fictions? Which truths are important to retell and which are edited out? Who holds the power to shape these narratives? I don’t yet have many answers, but I think these questions should trouble us, just as the anonymising rectangles would if we saw them in our textbooks today.
Cover image:
A man writing; representing the faculty of memory. Engraving, 16–.
Jenner, Thomas, -1673
From the Wellcome Collection, reproduced with thanks. Attribution 4.0 International (CC BY 4.0)
References
- Clarke, Rachel, Your Life in My Hands: A Junior Doctor’s Story (London: Metro Books, 2017)
- O’Sullivan, Suzanne, It’s All in Your Head: Stories from the Frontline of Psychosomatic Illness (London: Vintage, 2016)
- Watson, Christie, The Language of Kindness: A Nurse’s Story (London: Chatto and Windus, 2019)