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.”
The Intima: A Journal of Narrative Medicine, Columbia University Program of Narrative Medicine:
“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.”
This is so timely.
Josephine, this is such an important and muddy topic. One story I published was “Lessons” in Family Medicine. (http://www.stfm.org/fmhub/fm2012/September/Sharon582.pdf). The editor agreed to publish with permission of the patient. She read it and has an addendum to the article. With the book I am publishing (soon I hope), we were only able to contact about 1/3 of the patients. For the others key identifiers were changed.
What I can say: the conversations when I or we had them were rich and informative to my personal process of writing my stories. For me these stories are all about relationship and the sharing of the stories built relationships in quite enriching ways.
I do not know what to do about administrators claiming that to contact a person is a HIPPA violation. That is very unsettling. Two people I contacted were people I only knew through an ER encounter. The conversations were rich and rewarding. We have access to the charts. Is calling a HIPPA violation? Is that different from the person I see about 11 times a year? Who can I call. I am not expecting you to answer, just musing on how hard this is!
The ethics interest me more than HIPPA regulations. And that is really what you (and I) are trying to discern.
I have read narratives by health care providers where the “purpose” seemed to be leaving the reader with a sense that the author/provider was a good and empathetic person. With this in mind, I do like the criteria of social value to the sharing, respect, and holding up a lens that evaluates whether the patient, should she or he read the story, would feel embarassment or shame.
Thank you for continuing this discussion.
Personal stories are very powerful. It’s a good writing tool. People really connect with stories. However, medicine in general avoids anecdotes because they sometimes tilt an argument away from science toward belief.
Thanks for the comment. It does not have to be either/or and I think many of the problems with our healthcare system come from tilting too heavily towards hard science (or profit perhaps?) and away from the human sitting there on the exam table or in the hospital bed or shut in–ill–at home or in a doorway. Anecdotes should never be the sole reason to sway policy or practice one way or the other, but they need to be listened to and heeded along with all the other evidence in decision-making. I like this statement by physician and poet Raphael Campo:
“The inscrutably enduring power of the anecdote itself is what incites all our most fearsome defenses. So furious are we in our rejection of the merely anecdotal one cannot help but begin to wonder at it. What is it in the ostensibly harmless tale my great-grandfather told about the secret of his longevity being the small glass of bitters mixed with a raw egg he downed before bedtime each night since the age of ten that rallies us to spend billions of dollars in grants from the National Institutes of Health , disbursed every year to scientists seeking their own more explicitly pharmaceutical recipes for living longer? Why does our clinging to superstition and our willingness to be intrigued by mystery provoke such an angry, unrelenting diligence? An anecdote, after all, is just a story”
(From: “Anecdotal Evidence: Why Narratives Matter to Medical Practice” PloS 3(10):e423, 2006.)
I have written a book about my dad’s experiences in several different nursing homes and assisted living facilities over a twelve year period. I do not name the homes or any of the staff or patients except him (to whom the book is dedicated) but it wouldn’t be difficult to identify either of these, if the book were to be read by anyone connected with any of the facilities. I am hesitating on the publication because of the dilemma of whether or not I could get into difficulty because of this. Most of the anecdotes involving Dad and others are revealing, funny, or sad and show his attitude toward this kind of living.
Thanks for telling me some about your book. Although I do not claim to be an expert on these sorts of things it sounds as if you have taken appropriate precautions to not reveal the specific identities of the facility or their clients and staff. It would also be the call of your publisher and their legal staff. Best of luck with your book project.
Thank you. Originally the book was just a collection of anecdotes about my curmudgeonly dad and his experiences in the various homes. But then I thought I really had to tell his life story before the home so people could see how he became the way he did. So the book is in two parts, first his and his family’s history from 1903 until his death and second, the stories from the ‘home’ (actually many homes over the twelve years). Our friends and family, and even strangers, are eager for the book’s publication but I guess my concern is that if someone, especially from one of the facilities, read it and thought something in the book was about them and was unflattering (and some of it is) they would be upset. However, it is all true and documented either by me or by Dad in his own notes. I edit and publish books and I will be publishing this one. Or maybe I’d be better to send this one to a traditional publisher. Sorry for the long diatribe. It’s a dilemma-for me:)
Maybe try for a traditional or small press publisher first. It sounds to me as if you will be fine with what you have written.