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The Right to Write About Patients
By the time Viktor Nash died, he and Andrea Rowe called one another by their first names. For six years, Rowe had been Nash’s primary caregiver in the downtown clinic where she worked as a family physician. She accompanied him through hospitalizations and routine physicals, celebrated his sobriety, and bemoaned his tobacco use. She came to know his wife, Jeanne, too, and enjoyed both of their stories about Viktor’s clients at the homeless shelter where he worked as an addictions counselor.
Rowe wasn’t surprised to find herself feeling sad when Viktor died from complications of lung cancer. But she was surprised by how she felt in the months following. She thought often about his subtle humor and quiet dignity, about the failures and successes of her health care system she’d witnessed in his final years. She found herself wanting to tell his story to memorialize his life, but also as a case study in social inequities. Through Viktor Nash, she thought, she could advocate for patients and maybe even inform health policy. She recalled that as a college student, she had always enjoyed writing. She opened a blank document on her laptop.
The tradition of the physician-writer is a long one. We often talk about the “art of medicine”; like writers or artists, doctors rely on training and experience along with intuition and perception to accomplish their work, whether rendering a diagnosis or determining a treatment plan. The subject matter of the clinical encounter — which includes moments of intense human drama, like birth, suffering and death — puts healers in a unique position to articulate universal truths about our humanness and our limitations.
It’s no surprise, then, that Apollo was the Greek god of both medicine and poetry. Or that Anton Chekhov, the 19th-century Russian writer and physician, cohabitated promiscuously with the two crafts: “Medicine is my lawful, wedded wife, and literature my mistress,” he wrote. Some argue that illness narratives — the stories of illness spoken or written by patients, family members or caregivers — are more important now than ever. In her 2012 book Illness as Narrative, Ann Jurecic, English literature scholar at Rutgers, attributes their growing popularity to “the profound need people have to tell these stories in an era when religious and folk explanations no longer give a satisfying and complete meaning to their experiences, and when biomedicine largely excludes the personal story.”
In addition to giving meaning to personal experience, patient stories can also provide clarity and color to descriptions of biomedical breakthroughs or arguments for policy change. The late neurologist Oliver Sacks published popular books of case studies to make a taxonomy of consciousness accessible to physicians and laypeople alike. Surgeon Atul Gawande tells the stories of patients to cross-examine our health care system.
If writing about patients has ancient roots, however, so does the imperative to protect their privacy. More than 25 centuries ago, the Hippocratic Oath forbade physicians from sharing family secrets of their patients. “Not all doctors across all ages have understood the oath in exactly the same way,” notes Mary Fissell, professor in the Department of the History of Medicine at Johns Hopkins. As the ethical standards of biomedical research have placed increasing protections on the rights and dignity of research participants over the last century, similar rights — privacy among them — have been codified for patients outside of research too. Intuitively, it makes sense. Sensitive topics, like sexual abuse or torture, could cause worse psychological harm if publicized. Release of other kinds of information, such as that relating to drug use, domestic violence or adultery, can affect jobs or relationships, or lead to legal action.
In 1996, the passage of the Health Insurance Portability and Accountability Act (HIPAA) transformed the protection of patient privacy from a moral issue to a legal obligation. Among other mandates related to the standardization of electronic health care transactions, HIPAA prohibits medical professionals from publicly sharing health-related identifiable information about patients, their household members and their relatives. The law has bolstered patient privacy, but it has also cast a shadow over most interactions physicians have with their patients, from maintaining their records to telling their stories.
As Rowe sat down to write, she considered how to tell Viktor’s story and also do no harm. She knew about HIPAA; she’d been trained in the privacy laws since medical school. HIPAA names 18 identifiers — name, age, address, social security number and so on — that must be avoided if doctors are to, say, publish research reports about particular patients without their consent to include such information. To be safe, she decided to de-identify him. (In this article, Viktor and Jeanne Nash and Andrea Rowe are all fictionalized, composite figures.) She changed his name, assigned to him a different panoply of medical problems, a different social context.
Did she dare describe his alcohol use? The more she de-identified Viktor, the more she felt she was losing the uniqueness of his character and, consequently, the essence of the story. The gold standard, she knew, in writing about patients was to obtain their consent. Viktor was gone, so should she ask his wife? She hesitated, then picked up the phone.
As originally written, HIPAA applied to all patients at all times in perpetuity. Theoretically, the privacy of the deceased needed to be protected in order to prevent discrimination based on diseases that could be hereditary. Such protection could also mitigate negative effects from heavily stigmatized diseases, such as psychiatric illnesses and substance use disorders, on surviving family members.
Ohio State University historian of medicine Susan Lawrence argues, however, that concerns over privacy have swung the pendulum too far. In her recent book, Privacy and the Past, she suggests that our concern about harm occurring from the release of patient information exceeds evidence of harm actually occurring. In fact, she writes, if historians hide their subjects’ identities because of potential stigma generated by their medical and social vulnerabilities, “then the historian becomes complicit in perpetuating stigmas that she may actually want to try to reduce by bringing understanding and compassion to the complex lives of historical actors.”
Consider the cases of Johns Hopkins surgeon William Halsted, who popularized, among other operations and techniques, the radical mastectomy in the 1880s. When historians studying the patient experience and representations of the body wanted to use photographs of his surgical patients that included their faces, their heads were often lopped off to prevent identification. Phoebe Evans Letocha, collections management archivist at the Alan Mason Chesney Medical Archives at Johns Hopkins, saw the effect of this firsthand. “You lose that emotion,” she told us. “Then she’s just the disease, just the scar. You don’t see the human experience of the disease.”
In 2013, the Department of Health and Human Services changed HIPAA privacy regulations so that “individually identifiable health information of a person who has been deceased for more than 50 years is not protected health information under the Privacy Rule.” This loosening of the regulation has been a boon to medical and social historians, echoing the words of 18th-century philosopher Voltaire: “The living deserve our respect; the dead deserve only the truth.”
Feeling that her story was better told than untold, Rowe forged ahead. When she explained to Jeanne Nash what she wanted to do, Jeanne said she wanted to consult other members of the family and would get back to Rowe in a few days. In the meantime, encouraged that she would get consent, Rowe returned to her draft.
In her efforts to bring Viktor’s story to life, she realized there were details she hadn’t learned in his 15-minute-long clinic visits. She had never researched her patients through social media before — as a physician, she thought it was important to keep a low social media profile herself — but she decided to Google him. She was surprised to find a lot about him electronically. In fact, his wife had maintained a health journal for him on a public site where she detailed Viktor’s treatments, and where friends and relatives posted encouraging notes.
Rowe found herself feeling resentful as she read Jeanne’s public airing of Viktor’s story. Why had Jeanne hesitated to let her write about him? She tabled the project for a week, busying herself with her clinical work. Gradually, it occurred to her that Jeanne wasn’t just worried about Viktor’s privacy; her reluctance stemmed from a question of ownership. Who tells a story, Rowe realized, can be just as important as what the story tells. Do I have the right to tell the story for my own agenda, she wondered?
Telling a patient’s story, particularly if conclusions are drawn or an agenda expressed, raises thorny ethical questions. Anna Reisman, an internist at Yale who directs a writer’s workshop for internal medicine residents, suggests that asking for permission does not eliminate the power differential between doctors and patients. In an essay in The Atlantic, “Should Doctors Write About Patients?” (2015), she shares the advice she gives to students: “I urged them to think about the 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.” Telling a patient’s story always involves an act of appropriation. The physician is opening a closed door, looking into a soul, revealing truths that may be generalizable but are profoundly personal as well. Reisman, unable to provide a universal answer to this dilemma, often suggests her residents put aside nonfiction essays and turn to fiction instead.
Jeanne called Rowe and agreed to the story as long as she could see it first. A few weeks later, finished story in hand, Rowe went to Jeanne’s house. Jeanne read it while Rowe played nervously with Jeanne’s dog. Ultimately, Jeanne looked up and said she was surprised. She had no idea this was what her dead husband’s doctor would write about. Still, she said she would give her consent, “out of respect,” as long as she could provide some pointers. These pointers, which she mailed to Rowe the following week, consisted of six pages of handwritten suggestions.
Rowe realized that she had little understanding of what consent meant in this context. Or was this not consent, but co-authorship? The two traded drafts two more times, and Rowe decided to submit the story for publication in a medical journal.
Writing about patients becomes particularly complicated when doctors try to publish. There are no industry standards as to how privacy issues should be handled, and guidelines vary considerably among journals, blogs and presses. JAMA, for example, provides authors with a permission form that must be signed by patients or family members “who can be identified (including by the patients themselves) in such written descriptions, photographs, or pedigrees.” Policies at the New England Journal of Medicine specify the need for written permission only for submissions to its section “Images in Clinical Medicine.” Other outlets use the specific language offered by HIPAA with respect to its 18 identifiers, yet others, including many blogs, have no defined policy at all.
The murkiness extends to in-house publications. Individual health care institutions apply their own rules and regulations, explains Audrey Huang, director of media relations and director of marketing and communications for research and education at Johns Hopkins Medicine. Patient stories, she says, are a powerful means of conveying to the public important advances and discoveries at Johns Hopkins. “Our patients are our greatest advocates,” she offers. At the same time, if a privacy suit arises, the hospital is legally implicated. “We’re very careful about not revealing too much.”
The first journal Rowe submitted her story to took issue with the politicized nature of her argument and the intimacy of her description, and rejected it. A second sent her a privacy form for Jeanne to sign and offered publication two months later.
When Viktor’s story finally appeared, Rowe was pleased to hear her colleagues praise it. She was even invited to meet with the dean of the medical school affiliated with her clinic to discuss her concerns. Jeanne liked the story too — enough to display a copy of it on her refrigerator. In the end, Rowe decided optimistically, the work and anxiety were probably worth it. But as she went back to seeing her patients, doubts lingered. Would she ever embark on a story like that again? She was pondering the question one morning when a colleague approached her: He was thinking of writing a patient’s story and wanted her advice.
Benjamin Oldfield, M.D., is a fellow in the National Clinician Scholars Program at Yale. Lauren Small, Ph.D., is an assistant professor of pediatrics at the Johns Hopkins University School of Medicine and an adjunct associate professor of English at the University of Maryland University College. Oldfield and Small are the founders of AfterWards, a program in narrative medicine, at the Johns Hopkins Children’s Center.