Writing About Patients: The Perennial Dilemma

December 1, 2007

Here is the conundrum: You have completed treatment with a fascinating and complex patient. Mr A has bipolar depression, Marfan syndrome, and hypothyroidism. You not only managed to navigate around the rocks of his medical problems, but you also managed to stabilize Mr A's bipolar disorder using a combination of lithium (Eskalith, Lithobid), thyroxine, and interpersonal therapy. You would now like to share your experience with colleagues, so you write up the case history; then suddenly, you are seized with misgivings.

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.

Today

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).

   
    
 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

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 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.

References:

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.