At the most rudimentary level, the average reader of a case report should not be able to recognize the identity of the patient after a casual perusal of the text. At the most stringent level of confidentiality, even the patient described would not be able to recognize himself in the case report. But in the latter instance, would the case be of much merit? Surely, there is something a bit perverse in creating a case history so estranged from the patient's own experience that the patient himself cannot recognize the subject of the report!
In theory, the ideal case report might be recognizable by the patient but by no one else—not even close friends, family, or members of the patient's treatment team, in those managed in clinics or inpatient units. I suspect that in practice, this ideal is rarely achieved. In my view, however, case reports should generally provide at least "level 3" protection; that is, even a determined reader should not be able to discover the patient's identity, even after extensive efforts (such as an online search, phone calls to possible informants, and so forth).What is confidentiality?
What, exactly, are clinicians required to keep "confidential"? It is clear that the medical record per se is nearly sacrosanct. Indeed, whereas the physical ("paper") record is the property of the psychiatrist, the information contained in the medical record belongs to the patient.3Such information cannot be released to third parties without the patient's explicit consent, absent a subpoena or other compelling legal requirement. The patient has what I call "intercessory prerogatives"; for example, if you plan to send a letter to the patient's insurer discussing her "substance abuse," the patient may justifiably intercede and say, "No way! I don't want that letter to go out."
It is less clear, however, that physicians are ethically required to subject written accounts of their own clinical experience to a sort of "prior restraint" process that is governed by the patient's preferences. It seems to me that the physician's narrative—whethera case study, an essay, or a poem—is properly understood as the intellectual or artistic work-product of the physician. In effect, it is the doctor's property. Far from presuming to tell "the patient's story" (as some patients' rights advocates put it), the physician's narrative is quintessentially the physician's story; it is about how the doctor perceived and experienced the patient's condition, care, and treatment.
I do not assume that the legal system would agree with this analysis, but on ethical grounds, I believe this is a defensible position—provided that the doctor's narrative adequately conceals the patient's identity from other parties. (If the doctor fails in this regard, he or she must be held accountable, both ethically and legally.)
To be sure, obtaining the patient's permission to publish is certainly required in some circumstances, but it is not clear that this is true in all cases. If, for example, the physician writes a poem about a patient 5 to 10 years after treatment has ended (as this writer has), is the physician ethically required to obtain the patient's permission? (Let's leave aside the practical difficulties in tracking down former patients or contacting the family members of patients who are deceased!) If our ethical responsibility extends to "protecting" a patient from a possible adverse reaction to reading about himself, does it also extend to very similar patients in one's practice who may read the case and mistakenly believe it is about them? Must we obtain their permission in advance, too, or reassure them after the fact that "This case report was not about you"?
Alas, there may be no good options in the matter of writing about our patients—only less bad ones.
In Table 2, I have suggested some do's and don'ts when submitting a patient's case for publication.Conclusion
It is my view—as well as the policy of this publication—that if accurate presentation of the case requires details that would probably reveal the patient's identity to others, the patient's informed consent must be obtained. In some instances, careful revision may avert the problem; in questionable cases, I recommend asking a trusted colleague to read the case and provide consultation. (Institutional review boards may also provide such oversight for psychiatrists associated with medical facilities.) I also recommend the self-administration of what I call the "sleep test": if you lie awake at night wondering whether you should publish a patient's case, you probably should not.
Some psychiatrists may choose to collaborate with patients in writing up the case report, as was suggested by Michael A. Schwartz, MD (personal communication, September 17, 2007). Others (eg, psychiatrists who intend to publish clinical cases) might consider an informed-consent process at or near the beginning of treatment. (A process is usually better than asking the patient to sign a form of some kind.) This might involve a statement such as, "Ms Jones, I want you to know that I am committed to protecting the confidentiality of the information in your record. From time to time, I do publish case reports based on patients I treat. I take great care to make sure that the identity of the patient cannot be determined by others. But, I do not necessarily show the patient the report or seek the patient's permission to publish it. How do you feel about that arrangement? If you are in any way uncomfortable with it, you should feel free now, or at any time, to 'opt out' of that arrangement. No matter what you decide, you will continue to get the very best care I can provide."
Of course, this sort of preemptive discussion might also create problems: perhaps the patient will think, "Here I come in with all these problems, and this joker is already talking about writing me up for some damn magazine!"
In the final analysis (pardon the pun), I believe Dr Glen Gabbard4,5 had it about right: "No approach 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; to ask another colleague to serve as author; or to use composites."4
Oh, and remember the sleep test.