I write about patients; I ask my students to write about patients. I do this as part of reflective practice and with the knowledge that it can contribute to humanizing health care for patients, families, and health care providers. But writing about patients has to be done in a respectful way, with adherence to certain ethical and legal guidelines. By now we all know that it is not okay to write about patients in an identifiable way, and certainly not on social media platforms while in a knee-jerk, bleary-eyed state. But when is it okay to write about patients and patient care?
Many physician writers I know adhere to fairly strict personal guidelines to only publish stories about patients with the patient’s permission–preferably written permission. Rita Charon, MD of Columbia University’s Program of Narrative Medicine is a staunch advocate of this patient privacy ‘rule,’ as is my colleague at the University of Washington, Sharon Dobie, MD (see her excellent recent blog post “Writing About Patients”). Nurse writers who I have talked to about this (like Theresa Brown, RN who writes for the NYT Well blog) point out that hospital hierarchies and power differentials make it much more difficult for nurses to be able to seek patient permission to publish a story about them. The nurse writers also make the case that in many clinical situations, tracking down former patients to seek such approval would itself be a breach of patient privacy under the federal HIPAA (Health Insurance Portability and Accountability Act) rules.
When I write personal narratives for publication I alter some biographical details of patients and change their names in order to protect their identities. I typically don’t change the names of co-workers and friends, and when I do I clearly indicate that in the text. My most recent published essay, “No Place Like Home(less)” (Pulse: Voices from the Heart of Medicine, 5-30-14), was really about me as the ‘patient’ and I purposefully left out names of co-workers since it wouldn’t have added anything (except length) to the essay. I avoid the use of composite patients (merging together details of two or more patients into one) because to me that enters the realm of fiction and I mostly stick to writing non-fiction. One recent exception to this though is my non-fiction/fiction piece “Steps to Footcare” (The Intima: A Journal of Narrative Medicine, February 2014). It was published as fiction because that’s the category I submitted it under. If I were to include it in a print book collection in the future (something I plan to do), I will most likely have it as a non-fiction essay with an explanation of how I crafted the essay.
Here are some current journal submission guidelines pertaining to writing about patients:
Pulse: Voices from the Heart of Medicine, Montefiore Medical Center and Albert Einstein College of Medicine:
“Does your piece describe a patient? Pulse–voices from the heart of medicine is committed to protecting a patient’s right to privacy. Ideally, you will obtain written permission from any patient you write about; as an alternative, you must change his or her name and omit or alter other identifying characteristics. A reader should not be able to pinpoint a neighbor, friend or family member as the subject of your writing.”
“Patient Privacy Notice
The Intima adheres to legal and ethical guidelines in accordance with academic and health community publication standards. As clinicians, patients, and family members, we feel strongly that patient privacy and confidentiality be maintained at all times. We simultaneously recognize that narrative power depends on intimate, singular encounters and the sharing of personal accounts in a respectful and safe environment. To maintain these standards, contributors should review the confidentiality guidelines in the Health Information Portability and Accountability Act (HIPAA), with particular attention to the 18 commonly accepted “unique identifiers.” We also encourage contributors to seek permission before submitting patient stories, and to fictionalize or change identifiable information whenever possible and appropriate to maintain patient confidentiality and privacy.”
American Journal of Nursing, Reflections (personal narratives):
“CONFIDENTIALITY Please use fictional names for all persons and institutions in your story. Locations may also have to be disguised.”