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.