A number of years ago, I wrote an essay about an elderly woman, a patient of mine. After her death, I spent months cobbling our encounter into a narrative, rich with detail about how her illness had come to define her life, what she looked like, how she sounded. I was proud of the piece and prouder yet when I learned that it would be published.
And yet I also felt anxious. This was her story, too. If she were still alive, I could have asked her permission. Now, I could omit details that made it more likely someone might recognize her. So I nixed a few touches that weren’t vital to the piece. Still, I was pretty sure that one of her children—if they happened to come across this—would recognize that their mother was the main character in this story.
I teach an annual writing workshop to medical residents and this issue comes up year after year. Residents, new doctors in their most intense years of training, are immersed in stories—stories of the hospital and illness, of tragedies and cures. They come to the workshop bursting with those stories. We talk about how to craft their anecdotes into compelling narratives, to harness emotions into images, to describe a person vividly through detail and metaphor. It’s when a piece starts to shine as potentially publishable that things get tricky.
The privacy rule of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) prohibits doctors and other medical professionals from publicly disclosing health-related identifiable information about patients, their household members, and their relatives. Doctors who publish research reports about particular patients, for example, must remove all demographic information necessary to ensure privacy, and, in some cases, obtain the patient’s signed permission.
But guidelines on narratives about interactions with patients are less clear-cut. And while it’s easy to avoid including the 18 HIPAA identifiers—name, age, address, social-security number, and so on—the descriptions doctors and other healthcare professionals provide about patients in personal essays are about as private as it gets: a conversation with a man just diagnosed with metastatic lung cancer, an admission of an extramarital affair, a patient who asks for help in dying.
Patients rightly assume that their conversations with healthcare providers are confidential, and while there’s an implied consent that relevant information may be noted in the medical record, no one expects a rendition of a seemingly privileged conversation to appear in a magazine or newspaper article. Or, for that matter, on a reality TV show. Although a television broadcast of a patient’s death, without family consent, is particularly egregious, is publishing an essay about a patient’s personal life that different?
In some instances, say, in an op-ed, a description may be so brief or generalized that it’s unlikely to be linked to a real person. Some medical journals that feature physician narratives state explicitly whether patient permission is required: The Journal of the American Medical Association, for example, will publish nonfiction about patients only if the patient signs a form. But most journals offer no guidance.
With my piece about the elderly woman already accepted, and thanks to a backlog at the publication, I had time to ponder. I decided to write a letter to my former patient’s daughter to tell her that I’d call the following week about something I had written.
When she answered the phone, I summarized my essay. She said nothing. I waited. Finally, she said that she didn’t really understand why I felt compelled to write this story. A lot of people might learn from it, I replied—doctors, patients, family members. Eventually, I talked her into it.
The piece was published and well-received. And yet, all these years and many personal essays later, there remains a niggling sense that maybe I shouldn’t be exposing the inner lives of my patients, that even with a patient’s okay, even after a careful resection of sensitive elements, I may have taken advantage of a confidence. More troubling, perhaps, is my presumption that I’m safe from offending or angering a patient because many of the people I write about are long dead or unlikely to come across my essays.
About five years ago, I dusted off an unpublished piece about another patient of mine, a man who had since died, and called his only relative, his ex-wife. She was glad to hear from me, but a bit baffled. Why would I want to write about his suffering, and hers? I told her that it might help others in similar situations. She hesitated, then said that my patient would have done anything I asked him to, so she supposed it would be okay. And yet I wasn’t convinced, so I put the story away.
Two years later, I read it again and decided to contact the ex-wife one more time. She was no longer at that phone number, so I searched Facebook. I found a photo of her and her new spouse, looking happy, and decided against forcing her to revisit that difficult time.
Recently, we wrapped up our annual writing workshop. As always, most of the residents are budding personal essayists and many wrote true-life narratives about their patients. I told them that I shared the impulse to capture these stories in bracing, telling words. Then I urged them to think about power in the doctor-patient relationship, and whether asking for permission to share a story in a personal essay is enough to remedy the moral ambiguity.
Perhaps it seemed odd when I challenged them to step away from what really happened and suggested that the solution might be to leave nonfiction essays behind. I told them this: Construct characters with complex lives who may or may not be based on your patients. Toss them into charged situations and see what happens. If they take me up on it, they’ll join an impressive group of contemporary physician-writers like Terrence Holt, Vincent Lam, and Louise Aronson, whose made-up stories about patients and doctors not only feel like the real deal but protect their sources. There’s value in real stories, and if doctors are careful and respectful, there are ways to write essays about patients. But sometimes, the truth can emerge more clearly—and more kindly—through the prism of fiction.