When physicians write about patients and clinical encounters, are they bound by the same bedside obligations to respect privacy and confidentiality? Physician and narrative medicine scholar Rita Charon suggests that patients own their stories, and for physicians to write about a patient encounter informed consent must be obtained. The physician/writer Richard Selzer expresses an alternative viewpoint: his life takes place in the "hospital or an operating room or the bedside of a patient and therefore, to ask me not to use the material would in fact [ be] to censor me, to silence me as an artist." Journals have a range of informed consent and permission requirements as a precondition to submission and publication of medical narratives involving potentially identifiable patients. As a writer and a physician, I've struggled with how best to balance my dual and dueling duties to patients, readers, and the creative work.
Some physician/writers believe they're respecting privacy and confidentiality by changing identifiable features, rendering patients functionally anonymous. Informed consent and the de-identification of patients through descriptive plastic surgery both strike me as well-intentioned, specific, but alas, superficial "treatments" for an issue that isn't so black and white.
Medical stories serve many purposes and come delivered in a range of genres, including essays, fiction, nonfiction, creative nonfiction, graphic novels, and poetry. The online bookseller Amazon offers 667 titles under the heading of "medical memoir." The growing number of clinical experiences penned in medical journals as well as media outlets like The New York Times illustrates that physicians are writing about their experiences for publication and a wide and eager readership exists. Blogs and social networking sites offer an expanding range of venues for publishing these narratives.
Paradoxically, the ubiquity of medical stories comes in the decade following HIPAA legislation and tightening reins on patient privacy. Perhaps the time has come to reexamine rigid conceptions of privacy and confidentiality as applied to writing about patients, and take a more honest and difficult angle on the question of how physician/writers work with and around these obligations.
We shouldn't be surprised physician narratives have been the subject of greater ethical examination the past few years if we consider the broader genre of nonfiction and the ethical questions facing professional journalists. "It is hardly possible to write about the real world without taking a few steps into a slippery slope," wrote journalists Mark Kramer and Wendy Call. "As writers who delve into other people's lives, we can't stand on the edge of that slope prissily avoiding it. We are there. To operate ethically we must begin by acknowledging that." Rewards of narrative writing, they believe, are possible only when writers accept ethical responsibility. They acknowledge that a journalist may violate a subject's privacy when gathering material. The journalist Isabel Wilkerson wrote, "Narrative writers must strike a careful balance, caring about our subjects without sacrificing our narratives, with caring about our narratives without sacrificing our subjects ... good journalism and empathy can go hand in hand."
The teller of any story has great power. The relationship with the subjects is not an equal one. "The moral imperative lies with the writer."
The Physician/Writer and the Patient/Subject
The physician/patient relationship, even at its most ideal, teeters with questions of inequality and power independent of any physician's desire to write about it. To be sick, one enters an anxious, vulnerable, and exploitable state, one characterized by exposure. Not only is the flesh revealed, but charged intimacies -- fears, worries, failings.
The patient is dependent upon the physician's expertise and specialized training, and trusts the physician will use this information only to restore or improve her health; that whatever is revealed travels no further. Physicians, in turn, are duty-bound to honor and protect what's told to them. Traditionally, medicine has foundations as a moral community dedicated to something other than self-interest. Patients should not be used by physicians as means towards personal ends. The journalist building a narrative using particular subjects comes prepackaged with his or her intentions on full display. When physicians write about encounters involving patients, it might be argued they are operating as clandestine operatives.
Violating Privacy and Confidentiality Without Getting Caught
Privacy is "characterized as freedom from intrusion or exposure to others," and the focus of this discussion is informational privacy, the prevention of disclosure of personal information. Confidentiality is violated if a person to whom information was disclosed in a confidential relationship fails to protect that information, or makes a disclosure to a third party without consent.
Altering identifying details obtained in a strictly defined professional relationship doesn't alter any moral breach because it doesn't change the condition under which the information was obtained; the physician/writer simply reduced his or her risk of being caught. And stripping identifying features is a precarious business -- even the most diligent efforts risk leaving fingerprints, and people can figure it out. So let's be honest about the practice of de-identifying: it might cloak a patient's identity, but it still violates privacy and confidentiality.
Certain legal and ethical privacy and confidentiality protections feel like window dressing in today's clinical world. The army of individuals constituting the healthcare team (not even including various third parties from quality improvement to insurance companies) makes for a porous firewall when it comes to healthcare privacy. Almost 30 years ago, predating the Internet and the push for electronic medical records, physician-ethicist Mark Siegler called patient confidentiality a "decrepit concept." In our confessional age of memoirs and reality television, blogs, Facebook, and Twitter, normative lay conceptions of confidentiality and privacy have taken seismic steps towards making them public commodities.
The physician/writer must first recognize the tension: the physician's moral duty to protect patient privacy and honor confidentiality may conflict with the writer's duty to his or her creative work and, ultimately, to the reader.
When I consider physician/writers whose stories and essays cross the threshold into literature -- William Carlos Williams, Richard Selzer, and Oliver Sacks serve as a few examples -- the possibility that they might have breached patient privacy and confidentiality doesn't trigger the same type and degree of moral outrage in me as less accomplished writers. Their transgression is met by a shameful ambivalence on my part. Their willful exploitation of the doctor/patient relationship feels like an unfortunate but unavoidable trespassing necessary for generating important, powerful narratives. The physician in me holds a strong position regarding the obligation and necessity to respect patients' confidentiality and privacy. But a thoughtful, balanced, well-written reflection piece published in a respected peer-reviewed journal feels less morally culpable than a feverish rant posted on a physician blog, even if both writers breached patient confidentiality in the process. The quality of the work, as well as the skill, sensitivity, and responsibility of the writer, strike me as morally relevant when judging any breach.
The writer in me is well aware of the instinctual tendency of writers to be magpies. They'll feed on anything if it nourishes their creative work. The writer's ears and eyes are always primed, and this reflex in the physician/writer when doctoring can create a slippery slope that might be difficult to recognize, negotiate, or control until too late. The physician/writer must be first, and foremost, a physician.
It's My Story; No, It's Mine
Charon has written beautifully on the idea that patients own their stories, so what is revealed to physicians can be used for other purposes only with their consent. I agree with her in principle, but in practical terms consent feels like a moral spare tire: It will get you safely home now and then, but it's not terribly practical for varied day–to-day driving. It feels disingenuous to claim that patients own their stories when physicians are situated as prominent characters in the story or experience, when physicians are integral to these stories. I don't discount the importance of privacy and confidentiality, only posit that such duties are not absolute or inviolate. They are prima facie duties, subject to override by stronger competing moral claims; examples include imminent threats to identifiable others, and mandatory reporting of child abuse, gun shot wounds, and certain communicable diseases.
Rather than take an idealized conception of story ownership, a more realistic and sincere approach to physician/writers' dual and dueling responsibilities would involve trying to dissect this notion of ownership into identifiable parts. Perhaps we could decide upon the types of narrative details we might consider the rightful possession of the physician or the patient, what information deserves shared custody, and what fragile or intimate details should be left off the table completely.
Such a dissection poses challenges. But casting the light away from consent and anonymization forces us to examine whether our unease with certain narratives really emanates from abuses of privacy and confidentiality, or whether it's from the relationship of these breaches to the overall quality of the work.
Informed Consent for Inspiration?
Conceptually, consent works well in particular situations -- specific moments, a strong pre-existing relationship, and a straightforward narrative. But in practice consent can be suspect even when obtained. Let's say my internist asks me if he could write about an experience we shared as patient and doctor. He's ushered me through a few serious illnesses, and he knows my complicated medical history and more vexing personality. I can refuse his request. But I'm indebted to him and wouldn't want to offend him or dent our relationship, because excellent internists are like diamonds. So I'd "consent," fully aware that it isn't completely voluntary. And let's say he gives me Botox on the page, it's not just "not bad," I emerge a better figure than I am in real life. Still, a cautionary tug might accompany my next history and physical. I may edit what I say, holding back sensitive information in a way that might not serve my best health interests.
The consent process is further muddied by the many potential uses of information for which consent is obtained. Sometimes it's simple: Can I write about your battle with cancer for an essay in a medical journal? But what if I want to use part of an experience, a shard of what the patient told me, a conversation I overhead between the patient and her husband, those large teeth, that groin arrow tattoo pointing one way.
Patients with compromised decision-making capacity are poorly equipped to provide true informed consent, seeming to limit or remove from narrative concern unique stories about patients suffering from mental illness, drug and alcohol abuse, serious trauma, and dementia.
I write fiction to avoid many of these conflicts, but I can't escape them. Even fiction writers aren't absolved from responsibility. Writers invent stories by finding them, and find them by inventing them. Joyce Carol Oates said, "To write is to invade someone else's space." Transgression and exploration are essential to the process. How should consent be incorporated when the physician/writer hasn't a clue about how specific information will be used? The lifted pieces serve as a nidus for something unimaginable at that moment, processed and morphed in the writing process at a date far in the future, and ultimately fashioned upon characters not yet created. The artistic process involves chasing ideas into these crazy places, letting your imagination wander. But the idea you chase might start with a breach of patient confidentiality and privacy. Can patients give valid consent for details used in a manner that one might define, for lack of a better term, as inspiration?
Selzer sits on one end of the spectrum. "I feel that I have as much right as any writer to use my life experience. To suppose that there was an ethical or moral question in the selection of that material would be dangerous territory. If constraints were to be placed in that way, I think that would be too bad." Too bad for the writer, and the writer in me agrees. But what about the physician's moral responsibility to his or her patients?
Coulehan and Hawkins invoke the concept of "relational ethics," the potential for such writing by physician/writers to both benefit and damage the physician/patient relationship. Jerome Groopman paints a similar perspective on these dual, or dueling, moral responsibilities, situating the physician/writer as a trusted ambassador to the medical experience. "I was a physician writing about people I cared for, and who trusted me," writes Groopman. "So to succeed meant more than the usual. It meant that the writing could not be divorced from practice of medicine, and that it would be judged by its effect on my relationship with my patients and their loved ones."
Caring for Patients and Readers: What Next?
A voyeuristic element is integral to the beauty of medicine. William Carlos Williams said his medical badge "was the thing which gained me entrance to those secret gardens of the self."
I admire and crave the work of colleagues who take the trafficked physical and emotional terrain of medicine and infuse it with a fresh palette. Critical evaluation of physicians' published writing about patients -- in print and online -- should honor these aspirational goals: respect patients and readers, produce truthful and engaging work, commit to transparency, and acknowledge that privacy and confidentiality is sometimes compromised in published narratives. I can't bring myself to give up what would be lost by stepping out of this conflict, and I can't reason it away, so accepting the tension may be justified. I ask my detractors to troll their bookshelves and syllabi for their favorite books, essays and stories, and consider whether privacy and confidentiality was breached, whether informed consent was obtained. Did those concerns even cross your mind? What might be lost if restrictions prevented these works from taking shape and finding publication?
Physician/writers negotiate an uneasy alliance. As physicians, we are bound by moral codes distinct from other professions. We're deceiving ourselves if we believe that informed consent is the answer, or that patients alone own clinical stories. Using instruments like informed consent serves a purpose for a narrow range of writings, but it might be the wrong or misapplied tool for others. This shouldn't discount the use of consent, but we should be wary of its shortcomings. And stripping identifiable features feels disingenuous to me if the exercise deludes the physician/writer into believing that patient confidentiality wasn't breached. We must be honest about the many ways medical experiences are connived onto the page, and be mindful of other bedside obligations when writing. These include veracity, trustworthiness, and compassion.
The physician/writer must be sensitive to moral landmines when writing medical narratives, and rigorously question themselves and their work. Were possible breaches of privacy and confidentiality minimized or eliminated? Did the situation satisfy conditions that make genuine consent possible, and was it obtained? Was the reader informed whether the narrative is fiction or nonfiction? Is the work excellent and original? Medical journals rarely publish studies that have already been done, that don't add at least a new wrinkle to the literature. Medical narratives must be interpreted similarly. The medical profession, editors, physician/writers, and laypersons from the worlds of publishing and patient advocacy should take the lead in this arena. The quality, intention, and respectfulness of the written work has moral resonance for me, and such writing should be considered differently from medical narrative porn, the willful display on the page of voyeuristic behavior, actions, or findings. I recognize that judging the worthiness and quality of art is a subjective beast, but I trust that open and respectful dialogue can lead to a consensus on what counts as responsible work.
A simple, imperfect test might have the physician/writer imagine how the patient would respond to their work. Not whether the patient would grant approval, but would he or she consider the work fair, thoughtful, the best it could possibly be? And, would the patient still respect you as a physician?
Jay Baruch is Associate Professor of Emergency Medicine at Alpert Medical School at Brown University, where he's Director of the Program in Clinical Arts and Humanities, and Director, Medical Humanities and Bioethics Scholarly Concentration. His second collection of short fiction What's Left Out was recently published by Kent State University Press. A version of this article originally appeared at ATRIUM: The Report of the Northwestern Medical Humanities & Bioethics Program.