Writing About Patients: The Perennial Dilemma
Writing About Patients: The Perennial Dilemma
Do you need Mr A's permission before submitting the case, even though you were careful to disguise his identity? Is it legal and ethical to proceed with publication without such explicit permission? After all, you want to respect the patient's autonomy and privacy. Then again, what if the patient refuses to give his or her consent? Do you really want to "kill" the case report? Don't you have a professional obligation to teach the art and science of psychiatry through such reports? Of course, the patient may have some important insights that could enhance the report, but what if he insists on making changes that contradict your medical opinion? Even worse, what if merely presenting your write-up to the patient opens old wounds and actually precipitates a relapse of his depression? Finally, is informed consent even possible, given that your patient will undoubtedly feel an obligation to assist and please you?
On the other hand, if you do not obtain permission, aren't you misappropriating the "patient's story" as your own? Shouldn't an empowering and collaborative approach be preferred in writing about the "shared experience" of treatment? Furthermore, suppose you do not obtain Mr A's consent and he then recognizes himself in your case report. After all, some patients read our professional journals or find our articles on the Internet. What reaction will that bring? Will the patient be flattered that you thought enough of him to publish the case? Or will the patient be furious with you, and possibly even sue? Come to think of it: Was that part about "Mr A is 7 feet, 2 inches tall" so accurate and specific that Mr A could easily be identified as the subject of your report? Maybe you should just drop the whole publication idea and go to a movie!
A historical perspective
This is a conundrum, indeed. From a historical perspective, of course, psychiatrists have been writing about their patients for more than a century. Indeed, Freud maintained that analysts have an affirmative duty to publish what they learn from treating patients.1 In publishing his case history of Dora in 1905, Freud took care to conceal the patient's identity; for example, the patient he wrote about was not from Vienna, nobody knew that Freud was treating her, and Freud used no names that would be recognizable. He also believed (correctly or not) that the patient, whose treatment had been completed 4 years earlier, would "no longer be interested in the events he reported."1
Ultimately, despite Freud's precautions, Dora's identity was discovered.
Clearly, there are compelling legal and ethical reasons for routinely obtaining a patient's permission to publish his or her case history. As Alan Stone, MD, a member of Psychiatric Times' editorial board, succinctly put it: "Why not get the patient's consent? For example, [say], 'Here is the disguised, brief account of your illness. Is there anything you would like me to change or further disguise?' Get a signed consent that solves the legal and ethical questions" (personal communication, September 6, 2007). Dr Stone is in good company. Richard A. Friedman, MD, an academic psychiatrist who writes for the New York Times, routinely obtains patients' permission for his case write-ups. "The reason is that I don't want them to feel in any way surprised or exploited. I don't do it for legal reasons, but more because it's the way I'd like to be treated if someone were writing something about me" (personal communication, September 6, 2007). Some medical writers will seek more informal assent on the patient's part, without going through a formal consent procedure.
But psychiatrists Stephen B. Levine, MD, and Susan J. Stagno, MD, offer another perspective, arguing that, at times, obtaining the patient's permission to publish may actually be unethical.2 With respect to patients still in treatment, Levine and Stagno argued, "Asking for permission crosses a professional boundary by insertingthe doctor's professional agenda into the treatment. The agendaconsumes the patient's time and energy. It temporarily transformsthe therapy into a discussion of the therapist's issue." These authors observed that "publication has nothing to do withwhy the patient came for therapy," and that strong negative emotions may be unleashed when publication is raised.
Although Levine and Stagno discussed this in the context of patients under active treatment, I see no reason why the same ethical issue could not arise even with some former patients—particularly those with a fragile recovery who might easily be overwhelmed by having to grapple with the therapist's "professional agenda." On the other hand, as Dr Stone reminds us, "informed consent was imposed by courts on a resistant medical profession who said it disrupted the doctor-patient relationship and burdened the patient with information he or she could not handle" (personal communication, September 6, 2007).
In truth, the whole notion of "confidentiality" is more complex than it may appear at first glance. Confidentiality is not a binary term. Rather, we can define several levels of confidentiality with respect to a given case report (Table 1).
Conceptual levels of disguised patient information
|1. Average reader cannot recognize the identity of the patient after reading the article|
|2. Average reader cannot discover the patient's identity after casual investigation (eg, Google search)|
|3. Determined reader cannot discover the patient's identity after extensive attempts (eg, extensive online search, phone calls to potential informants, and so forth)|
|4. Professional private investigator cannot discover the patient's identity after a determined effort|
|5. Criteria 1 through 4 met, plus family and close friends cannot recognize the identity of the patient on the basis of the case report|
|6. Criteria 1 through 5 met, plus patient does not recognize that the case is about him or her|
Note: Case reports written without the patient's consent should meet at least the first 3 levels of confidentiality.