AMA Journal of Ethics^®

Case

Dr. Zhou is a psychiatry resident finishing her second year at an academic medical center in a university town. One of her first continuity clinic patients, Teresa, the 15-year-old-daughter of a university staff member, was referred to the clinic after her family’s insurance coverage changed and she needed a new mental health provider. According to the records from her prior psychiatrist, Teresa had been diagnosed with bipolar disorder. Despite several courses of pharmacotherapy, however, she has continued to struggle with mood symptoms and is still doing poorly in school. Dr. Zhou focused her first few meetings on building a good rapport, and eventually Teresa confided in her that she had been using various drugs with her friends. Addressing substance abuse became a part of Teresa’s treatment. After a year’s work together, Dr. Zhou felt that Teresa had made a good amount of improvement.

When Dr. Zhou presents Teresa’s progress to her attending physician, he remarks that she has been doing very well managing a complex case. Recalling that Dr. Zhou had mentioned the possibility of applying for a fellowship in child and adolescent psychiatry, he suggests that she look into writing up Teresa’s case and submitting it to a professional journal. Distinguishing between bipolar disorder and substance-induced mood disorder can be very difficult even for an experienced psychiatrist, he tells her. Not only is this a good case study, he adds, but a publication would look very good on her upcoming application.

Dr. Zhou writes up the case, but returns to her attending physician, uncertain. “What are the rules about getting permission from the patient when you publish their case study?” she asks. “Just make sure you’ve changed her name and de-identified her,” he tells her. “That’s all I have usually had to do.” Her other clinical mentor disagrees. “Lots of the journals are changing their policies,” she says, “and many of them would expect you to ask Teresa and maybe her parents for their consent, then have them read the draft over before you send it in.” Dr. Zhou is concerned about how she should proceed. She doesn’t think Teresa would necessarily mind being written about, but she wonders if that information will change her dynamic with the patient.

Commentary 1

Clinicians have been writing about their patients (or clients) for more than a century. Indeed, Sigmund Freud maintained that psychoanalysts have an affirmative duty to publish what they learn from treating patients [1]. In publishing his case history of “Dora” in 1905, Freud took several steps to conceal the patient’s identity; nevertheless, Dora’s identity was eventually discovered.

The case of “Teresa” raises many ethical questions and dilemmas with respect to publication of clinical case reports. What are the physician’s fiduciary responsibilities to the patient? How should physicians weigh their duty to protect the patient’s privacy against their well-recognized responsibility to share their clinical experience and to educate colleagues? If physicians routinely seek the patient’s permission to publish case studies, must they also allow patients the “right to revise or reject” the case write-up? How do the specific concerns in treating children and adolescents affect these decisions?

General Ethical Implications of Case Reports

Among the many ethical considerations in publishing clinical cases are the following: (1) preserving confidentiality—that is, protecting the patient’s right to privacy; (2) fulfilling the physician’s pedagogical responsibilities; (3) adhering to the principle of nonmaleficence, which entails avoiding any action that may harm the patient; and (4) respecting the potential ownership rights of the patient to written material that pertains to his or her care [2].

In truth, it is not clear precisely what clinical material physicians are required to keep “confidential.” On the one hand, information contained in the medical record belongs to the patient and, absent a subpoena or other compelling legal authorization, cannot be released to third parties who are not directly involved in the patient’s care without the patient’s explicit consent [2, 3]. On the other hand, it is not clear that physicians are ethically required to subject written accounts of their own clinical experiences to a “prior restraint” process governed by the patient’s preferences. Thus, the physician’s narrative—whether a case study, an essay, or a poem—is arguably the intellectual or artistic work product of the physician. In this view, so long as adequate measures are taken to disguise the identity of the patient, the physician has no obligation to obtain the patient’s permission to publish the case material. Indeed, any putative “right” of the patient to approve or edit such material creates potential barriers to the unfettered transmission of medical knowledge. Nonetheless, the principle of nonmaleficencemayimpose certain constraints on what the physician may publish, sometimes superseding the physician’s pedagogical responsibilities and prerogatives [2, 3].

Risks to the Therapeutic Alliance

One can easily understand, in this age of Google and Facebook, that some patients may seek out and discover professional articles written by their physicians. A patient who recognizes himself or herself in the physician’s case report may react with anger, dismay, or confusion if not adequately prepared for this event. Some medical writers will seek more informal “assent” on the patient’s part, without going through a formal consent procedure. I have generally published case material relating to formerpatients treated many years ago without attempting to “track them down” or obtain informed consent in such cases. Not all colleagues would agree with this approach, and omitting informed consent clearly raises the threshold for disguising the case material and protecting the patient’s confidentiality.

Finally, even though the patient’s informed consent may protect the author and the journal, it may fail to protect the patient from an adverse outcome if, for example, a reader is able to identify the patient from the written report and uses this information against the patient’s interests. Clearly, such an outcome could be devastating to the therapeutic alliance and could create serious legal problems for the physician.

Is Obtaining Informed Consent Always in the Patient’s Best Interest?

Notwithstanding such risks, one perspective argues that the very act of obtaining the patient’s permission to publish may sometimes be harmful—and even unethical. With respect to patients still in treatment, Levine and Stagno [4] argue that asking the patient’s permission to publish crosses a professional boundary; i.e., it inappropriately inserts the doctor’s personal and professional agenda into the patient’s treatment. Dealing with the physician’s agenda may consume the patient’s time and energy, and, on this view, risks transforming a treatment session into an adversarial discussion of the physician’s personal or professional goals.

Furthermore, the very concept of informed consent may be dubious when it comes to obtaining a patient’s consent to publish. After all, a patient in treatment might reason, “If I don’t give Dr. Jones permission to write up my case, she might not like me anymore—maybe she’ll even stop seeing me.” Given the asymmetric power relationship in the patient-physician dyad, the notion of truly informed consent—freely and autonomously provided—is at least open to question.

Journal Policies on Case Reports

The editorial policies of professional journals reflect a wide range of concern about privacy in clinical case reports [4]. For example, one prominent journal, the American Journal of Psychiatry, has a very succinct and generalized requirement, under the rubric of “patient anonymity”:

Ethical and legal considerations require careful attention to the protection of a patient’s anonymity in case reports and elsewhere. Identifying information such as names, initials, hospital numbers, and dates must be avoided. Also, authors should disguise identifying information when discussing patients’ characteristics and personal history [5].

In recent years, however, there has been a trend toward more stringent consent requirements, as typified by these instructions from the British Journal of Psychiatry:

If an individual is described, his or her consent must be obtained and submitted with the manuscript…. The individual should read the report before submission. Where the individual is not able to give informed consent, it should be obtained from a legal representative or other authorized person. If it is not possible for informed consent to be obtained, the report can be published only if all details that would enable any reader (including the individual or anyone else) to identify the person are omitted [6].

Interestingly, these instructions seem to require that even the subject of the case report should not be able to recognize him- or herself in the report. One wonders how far the clinician would need to depart from the salient clinical facts of the case to disguise it even from the patient. Furthermore, radical alteration of the clinical data runs the risk of weakening or confusing the relevant teaching points. Nonetheless, self-recognition on the patient’s part—even if not technically a violation of the patient’s privacy—presents substantial risks to the therapeutic alliance.

Specific Issues for Dr. Zhou

In the case at hand, there are also ethical and legal issues arising from the patient’s status as a minor. As forensic psychiatrist Robert Simon has noted, confidentiality statutes may distinguish between “young minors” and “emancipated minors”; i.e., minors aged 14 or older may be considered “emancipated” when they are not living at home or are self-supporting [7]. In general, the parents or legal guardians are the legal decision makers for young minors. This may not apply in the case of emancipated or “mature” minors, who may be deemed sufficiently mature to consent to treatment—and, by extension, to publication of case material. How Dr. Zhou should proceed in the case of “Teresa” may depend, in part, on the formal or informal understanding Dr. Zhou has with the patient and her parents (see below).

Finally, Dr. Zhou has to consider her motives in publishing Teresa’s case history. These bear on the physician’s responsibility to put the patient’s needs first, under the rubric of beneficence and nonmaleficence. For example, Dr. Zhou might do well to reflect on whether her desire to publish represents a legitimate wish to educate colleagues or a more self-focused need to “please” her attending physician or secure her entrance into the fellowship program. Of course, most ambitious physicians want to advance their careers, as well as win the approval of their supervisors and teachers. These feelings per se should not preclude publication of a case—but they may merit a process of reflection, introspection, and consultation with supervisors or colleagues.

What Should Dr. Zhou Do?

In my view, there is no single “right” answer to this question. Given Teresa’s age and the ongoing nature of treatment, I would be inclined to obtain both Teresa’s permission and that of her parents. However, my opinion might differ if Dr. Zhou had worked out a clear understanding or therapeutic contract with Teresa and her parents, stipulating otherwise. For example, some mature or emancipated minors might not want to have any communication with parents, a preference the physician should honor except when there is a question of “danger to self or others,” e.g., in the event the (minor) patient became suicidal. When such an understanding exists, the patient herself would be presumed competent to consent to publication. Clearly, it is important for physicians to work out a therapeutic contract with their patients regarding publication of case material—though I suspect this is rarely done. It is especially important in cases involving the treatment of younger or nonemancipated minors.

Conclusion

Determining the best approach in Teresa’s case is indeed a difficult judgment call, and it behooves the physician intent on publishing case reports to plan ahead for similar contingencies. In situations where possible harm to the patient or to the therapeutic alliance appears to outweigh the “teaching value” of the case report, the physician may be obligated to withhold publication entirely. As this is a complex, highly subjective determination, consultation with a senior colleague or supervisor may help the physician reach a more objective decision.

Alternatively, some physicians may choose to collaborate with patients in writing up the case report, as was suggested by psychiatrist Michael A. Schwartz in a personal communication in 2007. Of course, as he pointed out, this collaborative model poses its own set of problems, e.g., what to do when the patient wants to delete material that the physician wishes to include. Other physicians intent on publishing clinical cases might consider an informed-consent process at or near the beginning of treatment. This would apprise the patient of the physician’s usual policies regarding case reports and allow the patient to express concerns or even to “opt out” of the writing project. This sort of consent procedure must convey to the patient that the physician’s care and treatment will in no way be jeopardized if the patient chooses not to be the subject of any case reports.

Perhaps, then, we are left with this open-ended assessment by psychiatrist Glen Gabbard:

No approach [to publishing case material] is without its problems. A clinically based decision must be made in each case regarding whether the best strategy is to use thick disguise; to ask the patient’s consent; to limit the clinical illustration to process data without biographical details…or to use composites [8].