There's more than a bit of soul-searching needed when physicians bring patients' stories out of the clinic and onto the page
We physicians know that medicine is full of stories.
They keep us going, keep us coming back, sometimes keep us up at night. From your earliest clinical experiences as a medical student, you start building your private stock of stories: comedies and tragedies, dramas and shockers, quests and sagas and mysteries. Our training includes learning to construct narrative using the medical tools of the presentation and the write-up. Nowadays, in the interest of medical humanism, students and residents are often asked to construct “reflective narratives” in which they take time to consider and describe some of the complex aspects of medical stories that get left out of the formalisms of the medical record.
Given all that richness of incident, it’s not surprising that many doctors think about taking the incidents of the exam room or the operating room or the hospital ward out into public discourse and telling the world. But when we do that, ethical questions instantly crowd in, from the immediate issues of confidentiality to the overarching question of who owns the story and who has the right to tell it.
I’ve been writing and publishing stories about my clinical experiences since my first year of medical school, which means I have accumulated more than 30 years’ experience in weighing the ethical, professional, and literary rights and wrongs of what you tell and what you don’t. I think that gives me a certain authority to say on behalf of doctor-writers: We’re all making it up as we go along. Certainly, that’s what I’m doing.
Jerome Groopman, the HMS Dina and Raphael Recanati Professor of Medicine at Beth Israel Deaconess Medical Center, has been writing stories about patients and doctors for the New Yorker for almost two decades. The question of who owns, or should tell, the story, he says, does not have a simple answer.
“I think it’s a real issue,” he says. “It’s something that has to be thought about with real sensitivity because of the power imbalance and the sense that patients want to please their doctor or want to give their doctor something.”
Once a doctor becomes known as a writer, the interaction gets even more complex. “I’ve had patients say to me, ‘Well, I hope I’m not going to be a chapter in one of your books,’ ” Groopman says. “I say ‘Absolutely not. I’m a doctor first and foremost.’ ”
A physician-author may also encounter patients who hope their stories will be told, and who put the doctor in the thankless, editor-like position of needing to find a polite way to say, “Thank you so much, but this isn’t right for publication.”
Just the Facts, Ma’am
As the editor of the Well section in the New York Times, Tara Parker-Pope regularly receives and reviews narratives sent in by physicians. About six years ago, the Times published one such piece in which the patient, who was suffering from depression, was quoted as saying she was stressed about taking part in a regatta on the Schuylkill River. Readers wrote in to suggest that they might be able to identify the woman: The rowing community is relatively small and close. When Parker-Pope questioned the physician-author, it turned out that rowing was an invented detail—the patient was an athlete, but in another sport altogether.
“Ever since then,” Parker-Pope reported in an email, “we always double-check when doctors write for us, because we know the culture of the medical writing community allows for fabrication of details to protect patient identities. We don’t ever allow it.”
Arthur Caplan, the head of the Division of Bioethics at NYU Langone Medical Center, points out that journalism rests on a framework that holds that the absolute truth—in detail as well as essence—is an ethical good.
“Journalism wants the real identities,” he says. “Journalism loves reality—it’s a strong strong ethos.”
The thing about stories is that God is in the details. It’s the characters, the human touches, and the actual words that people say that make clinical encounters so complicated and compelling, so memorable and even haunting.
So what do doctors do with those details when they want to tell a story from clinic?
When I started writing about medicine, I went editor by editor in terms of how I handled identifying details. Most often, I suppressed them, but sometimes in magazines, which were willing to publish a disclaimer notice that details had been changed, I altered patients’ ages or genders.
I became increasingly uncomfortable with such alterations. I now teach in a journalism department and have come to believe in the journalistic standard— truth is truth, anything else is fiction. You suppress details, to keep people anonymous and unrecognizable, but you don’t alter them. And in fact, as Parker-Pope’s story illustrates, when you change details to conceal someone’s identity, you may in fact be identifying some real person who happens to fit your invented profile.
“I think you hurt your credibility if you put one untruth in your story,” Parker-Pope says, “one small white lie, you impugn the credibility of your entire story.”
A few years ago, somebody challenged me on the ethics of a story I had published, a true story about supervising the initial patient encounters of a small group of first-year medical students.
I had arranged for the students to interview the grandmother of a child who had spent a long time in the PICU after a bad accident. The grandmother delivered a passionate and heartrending speech about her granddaughter. After she finished, I put my arm around her as I offered her a tissue. Later, one of the distinctly shaken medical students, a male, asked me whether it was okay to hug a patient.
I wrote about that situation, using the story to illustrate the emotional intensity of the patient encounter and the complex etiquette of comforting and listening, which the student’s question evoked. When I read the published story to a largely medical audience, one of my listeners immediately brought up an ethical question: Had I asked permission before I published this story?
I smugly answered yes. Of course I had asked permission; I had spent a long time with the grandmother, asking if it would be okay for me to try and re-create some of her story in an essay about teaching and learning medicine, explaining that I would need to tell some of the story of what had happened to her granddaughter. Although I wouldn’t use her name, if she and others, such as the doctors or nurses in the PICU, read it, they would know who the story was about. I told my interlocutor that the grandmother was happy to give me permission and that she had said she wished she could tell that story to medical students everywhere.
“No,” said the woman in the audience, “I meant, did you get permission from the medical student?”
That had never occurred to me.
There are special rules that protect patients—in fact, there are laws that protect patients—but so long as I didn’t use the names of medical students or residents (or colleagues or nurses), weren’t my workplace stories fair game? I’ve thought more about this and I have to acknowledge that when there’s a power imbalance, you have to apply different standards. I wouldn’t write anything that in my judgement might make a student or a resident feel foolish or exposed, and I certainly would ask permission if I wanted to include any identifiable details. But would a student or a resident really feel free to say no?
I don’t think, however, that medical students and residents are covered by the same protective mantle that shields patients. I think there’s a need to acknowledge a potential power imbalance and to treat the young with care and respect and professionalism, but I don’t think it’s in the same ethical category as the doctor-patient dilemma.
Can patients actually give consent freely when a doctor asks? There are several different ethical questions involved, starting with the power dynamic and the possibility that an inclination to say no will be complicated either by a sense of gratitude to the doctor or the worry that declining might hurt the relationship and the patient’s future care.
There’s also the question of whether people who agree to have their stories told are fully aware of the possible ramifications. I once asked a patient in Boston if I could write about her interesting—and clearly identifiable—medical condition. She was technically an adult (19 or 20 years old). I told her I wanted to write about it for the New York Times and that I wouldn’t use her name or any details about her family or her life. But, I pointed out that if people at the health center or the hospital read the article, they might know I was writing about her. She told me I could write about it—no problem—and could use her name; she didn’t know anyone in New York, she said, so what did it matter? Needless to say, I was not particularly comfortable with that permission, and I didn’t write the story.
“I think consent is possible as long as you warn people about the possible cost of their real name appearing,” Caplan says, “and that their family might not be thrilled. You need to talk through what it means.” He said that people have many reasons for wanting their stories to be told, from the noble, such as raising money for a cause they care about or hoping to help others through the same difficulties, to the less elevated, such as hoping for attention.
“I’ve seen it done well, and people haven’t regretted it,” he adds. “I think when you’re dealing with vulnerable people—children, mentally impaired people, institutionalized people, people in the military—you hesitate.”
Whose Story Is It?
We all learn medicine from the stories of our patients. We learn from our teachers’ patients as well, through the stories that come down to us. For this reason, there is indeed a convention within the medical world that stories can be told, one exhibited in medical journal case reports and in patient stories in which details are redacted or, occasionally, altered.
“What we have generally done is leave things up to authors,” says Debra Malina, the editor of the Perspective section in the New England Journal of Medicine. “My sense is the physician who’s writing is the one with the relationship with the patient—that person has to be at peace with it.” NEJM doesn’t use real names when photos or x-rays of patients are published, and Malina thinks it’s reasonable to publish the disclaimer with an essay that names have been changed.
“I think more of the time than not people get permission from the patient and change only details that seem irrelevant to the point,” she says. “But we don’t publish fiction; we make sure stories are true.”
Malina gets most concerned, she says, when doctors submit articles that seem to be “pieces that are clearly for the glorification of the writer, and the patient is secondary.” She worries that with more medical schools and residency programs encouraging reflective writing, there will be a risk that stories that are therapeutic for the physician may be written or published specifically because they are therapeutic for the physician.
“You have to think about whose needs you are serving and who you can hurt and in what way,” she says.
Truth and Consequences
“Everyone makes up their own rules,” Groopman says. “I see myself as a doctor first and a writer second. That’s how I approach it.”
A newspaper editor looks at doctors’ stories as a journalist, responding to the ethic that Caplan identified: facts and truth are the highest standard. A medical journal editor looks at those stories in the context of the mission of the medical journal: to communicate important information that will improve medical knowledge and practice within the profession.
Here are my own guidelines. I’d like to promise you that I’ve always followed them, but I know that I’ve done my share of bobbing and weaving and probably will continue to do so for as long as I go on writing.
I have to be a doctor first and last. People are telling me what they tell me and showing me what they show me because I’m a doctor and that should guide all my behavior and responses.
Writing about patients has to meet the highest possible standards in terms of confidentiality, respect, and honor. Power differentials are real. If I do harm, even without intending it, I have committed a grave sin. Writing about students or residents also requires me to recognize similar ethical and professional strictures. But if there’s no power differential and I’m writing about colleagues, I can offend people if I’m willing to deal with the consequences.
If I invent details, I am writing fiction and must identify it as such. Composite cases, teaching parables, and rich evocative narratives inspired by real events are all potentially worthy fictions, but they aren’t true reported stories. It must be clear to the reader what is fiction, what is parable, what is teaching case.
Just because a patient story is important to me, or because writing it down is therapeutic for me, doesn’t mean that story should be published. In fact, these are lousy reasons to take a story public.
I’ve gotten stricter with myself about protecting confidentiality, but also about not changing details, about separating fact from fiction, and even, I hope, about remembering that it isn’t supposed to be all about me. But I’m sure I will go on making judgement calls that won’t look so good a little further down the road, and I’m sure I’ll go on worrying, which seems appropriate given the seriousness of the stories and the weight of responsibility to patients, readers, and even the medical profession.
“I’ve seen a lot of good that comes out of this,” Groopman says. “I understand the risk of exploitation or misuse and so on, but I think there is a middle ground in the ethical dilemma between abusing your position as a doctor to write the story versus giving people an authentic and meaningful view of the lives of patients and the complexities that both patients and physicians confront.”
Perri Klass ’86 is a professor of journalism and pediatrics and director of the Arthur L. Carter Journalism Institute at New York University.