Writing About Patients: The Perennial Dilemma

By Ronald Pies, MD | December 1, 2007

Dr Pies is professor of psychiatry and lecturer on bioethics and humanities at State University of New York, Upstate Medical University in Syracuse, and Clinical Professor of Psychiatry at Tufts University in Boston. His most recent book (with S. A. Jacobson and I. R. Katz) is Clinical Manual of Geriatric Psychopharmacology . His forthcoming book, Everything Has Two Handles: The Stoic's Guide to the Art of Living, will be published by University Press of America. Dr Pies wishes to thank all the following for their ideas and comments: Dinah Miller, MD, Daniel W. Shuman, JD, Robert I. Simon, MD, Richard A. Friedman, MD, Alan Stone, MD, Phillip J. Resnick, MD, Abigail Zuger, MD, Elissa Ely, MD, Michael A. Schwartz, MD, and Glen O. Gabbard, MD. The position advocated here, however, is solely the author's.

Confidentiality levels

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 Gabbard^4,5 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.

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by Ronald Pies | June 01, 2011 10:04 PM EDT

I appreciate the interesting comment from Dr. Edwards. Indeed, the physician's identity does greatly narrow the "field"of patients/subjects, if a third party has access to or knowledge of the physician's patient list. (Of course, if one is treating 1000 patients, that's still a pretty big field). In theory, submitting a case anonymously--i.e., without disclosing the clinician-author's identity--would indeed reduce the likelihood anybody could identify the patient. It would also greatly reduce the chances of a patient's determining that his or her doctor had written up the report; the patient might read the case and reason, "That sounds a lot like me, but who knows what doctor wrote up this case?"

Unfortunately, eliminating the clinician's identify is simply not feasible if one wants to publish the case in a professional journal, with perhaps very rare exceptions. Few professional journals would publish a case by "Dr. X", though on rare occasions (say, if the doctor risks serious harm from being identified) this might be permitted. There is, in addition, an ethical problem with writing up a case "anonymously" (i.e., not disclosing one's own identity as the physician). Such anonymity prevents readers from assessing potential conflicts of interest; e.g., a doctor anonymously writes up a case in which a gravely ill patient responds well to a newly-released drug, but it turns out that the physician is a major stock-holder in the drug company. I'm afraid that the world is simply too oriented to "full disclosure" to tolerate such a practice in any professional journal.

Personally, I also believe that we must take responsibility, by name, for anything and everything we write or publish in our capacity as physicians, including blogs. As Psychiatric Times readers know from my previous piece on "The Eightfold Path of Internet Ethics", I don't support anonymously-published or posted statements on medical issues, purportedly from physicians or other health care professionals.

Nonetheless, Dr. Edwards has raised a point that I have not seen in any of the literature on the subject of writing about patients--so, kudos on that, Dr. Edwards!

Best regards,
Ron Pies MD

by Berry Edwards | June 01, 2011 12:36 AM EDT

Dr. Pies fails to mention the most critical piece of information to correctly identifying a case (other than the patient's name): the physician's name. Knowing that will narrow the choices considerably. This is a great advantage of writing anonymously.

In my opinion a psychiatrist should never ask a patient for permission to publish information about her case.

References
1. Kantrowitz JL. Writing about patients, I: ways of protecting confidentiality and analysts' conflicts over choice of method. J Am Psychoanal Assoc. 2004;52:69-99. [Note: Kantrowitz has a series of articles and a new book on this subject.]
2. Levine SB, Stagno SJ. The ethical dilemma of right to privacy versus pedagogical freedom. J Psychother Pract Res. 2001;10:193-201.
3. Simon RI. Concise Guide to Psychiatry and Law for Clinicians.2nd ed. Washington, DC: American Psychiatric Publishing; 1998:58.
4. Gabbard G (interview with Peter Fonagy). International Journal of Psychoanalysis Newsletter. Spring 2003. Available at: http://www.ijpa.org/interviewnov02.htm. Accessed September 27, 2007.
5. Gabbard GO, Williams P. Preserving confidentiality in the writing of case reports. Int J Psychoanal. 2001;82: 1067-1068.

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Writing About Patients: The Perennial Dilemma

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