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.
Although Dr. Zhou’s mentors disagree about whether it is necessary to ask Teresa’s consent, as professionals they would agree that when clinical material is published it must be written in such a way that people reading the account are unable to identify the patient. But how can the author be sure? What kinds of disguise can the writer provide to maintain the relevant facts of the case while concealing the patient’s identity? In this instance, the patient is an adolescent, and it is likely that her age is relevant to her difficulties. So changing her age in any dramatic fashion would distort the material; it could only be altered slightly. What about a change in gender? We would have to know more of the details of the case to determine whether such a change would or would not distort the report. Could Dr. Zhou change the particular substance that Teresa uses? Maybe. Again it would depend on details we don’t know. So what other ways of disguising are possible? She could alter details of history that are not pertinent to this patient’s difficulties, such as her parents’ professions, her number of siblings, whether there is a family history of bipolar illness and, if so, which relative suffered from this problem.
The point is that Dr. Zhou must be sure that the disguise she uses really protects her patient’s confidentiality—that others reading the article won’t recognize her. Dr. Zhou’s mentors would agree on this. I hope that neither of her mentors would allow someone who was new at writing about patients to decide what degree of disguise was adequate. But what level of de-identification would keep the patient herself from recognizing her own story? The patient is a teenager and unlikely to read the psychiatric literature, but she will grow up and might be curious. Also, in this instance, one of her parents is a university staff member, someone who, depending on the field, might read a psychiatric journal. In addition, now that published articles are likely to be available on the Internet, they are available to the public and, specifically, to patients and their families as never before. Any curious patient can simply enter a therapist’s name, find out what he or she has written, and most likely view the article.
The author needs, therefore, to ask herself how Teresa would feel if she read this. Can Dr. Zhou write the case in such a way that her patient (or her patient’s parents) could read it years later and think, “That sounds like me, but I’m not sure it is. Could she have had another patient with a similar problem?”
In addition to the issues of disguise, clinicians must be careful, respectful, and sensitive in what they write about their patients, and how they do it; describing the patient in a manner that makes her feel like a specimen or otherwise demeaned must be avoided. How would Teresa feel reading about herself? Would she feel misrepresented? Objectified?
Does Writing Change the Treatment Dynamic?
Dr. Zhou thinks that Teresa wouldn’t necessarily mind being written about, but she wonders how asking for permission might change the dynamic in the treatment. Her concern about the effect of asking permission is well-founded and indicates her sensitivity as a clinician. Patients often grant this permission. They want to please their therapists, and some understand the importance to the field of disseminating knowledge through publications. Because their granting permission is influenced by the relationship and transference to their doctor, it can never be viewed as fully autonomous consent.
In this case, the patient is not an adult and may not be aware of how she will feel about her case being in print when she is older. Consent should be asked of her parents as well. If, however, they were to read what Dr. Zhou writes, as her mentor suggests, Teresa’s confidentiality would no longer be preserved.
How will knowing her doctor is writing about her affect their therapeutic relationship? It is unpredictable, but there will most likely be some effect. If Dr. Zhou’s request is granted, she will need to be alert to signs of reaction, e.g., a change in the patient’s openness or her mood, negative feelings, or apparent criticisms of other adults that might actually have to do with her feelings about Dr. Zhou. Teresa’s feelings about being written about and their effect on the treatment itself need to be explored. Is that workable? It depends on the patient, therapist, their relationship, and their ability to talk openly together about what Teresa thinks and feels.
Teresa might only react later. For example, I asked a patient if I might use a childhood experience of hers to illustrate a point in a paper I was giving. She reflected on the possible ramifications and then gave consent. A year later, she asked me to write a recommendation for her that would require my providing a dynamic diagnostic assessment. I tried to analyze her wish for me to do this, the meaning to her of what she imagined I would write, and so on. Ultimately it was clear to her that this was not something I would do, since I believed it would interfere with her treatment. “So,” she said, “it’s fine for you to write about me when it’s in your interest, but not when I believe it is in my interest.” While we were able to work out this therapeutic tangle, her reactions alerted me to be aware that consent may well be much more complex than it seems at first.
Informed consent is never fully informed because the meaning of having given it may not be fully conscious and it may change over time. A patient may think he or she really likes the idea of being written about; it makes him or her feel special and specially connected with the therapist who asks this permission, but the sense of specialness may come to interfere with other aspects of the patient-physician relationship.
Stepping back from the individual patient-physician dyad, there is the broader danger that, should informed consent become the accepted standard for publication, all subsequent literature would be patient-vetted. A literature that depended on patient approval would be skewed, inasmuch as clinicians would avoid addressing issues, such as negative countertransference reactions, that they wouldn’t want patients to be privy to. Exclusion of such topics from the literature could lead therapists to believe these areas did not exist for others or, at the least, should not be acknowledged publicly.
Given all these potential difficulties, why should Dr. Zhou write about Teresa? If her attending physician is correct that she has done therapeutic work that can help distinguish bipolar disorder from substance-induced mood disorder, she has a contribution to make to the literature. A field that lacks an up-to-date literature will stagnate. We need the enrichment that comes from peer- reviewed articles. Published papers are also an important and necessary way of preserving a history of any given field.
Therapist-authors wear two hats. First they are clinicians who have promised to do no harm, but they are also professionals who are committed to keeping intellectual discourse and ideas vibrant and relevant in their field. These two roles may sometimes conflict with each other.
In the course of working on my book, Writing About Patients: Responsibilities, Risks, and Ramifications (2006), I interviewed 141 clinicians about their attitudes and practices when writing about patients and 37 patients about the effect of reading about themselves. From these interviews, I concluded that there is no single or simple solution to the problem. Applying strict guidelines to all situations does not make clinical sense. There are potential clinical consequences both when therapists ask their patients’ consent and have them read what they have written and when patients discover and read publications about them without having been informed. The ethical principle that guides the decision is “do no harm.” But what is harm is not always predictable.
If Dr. Zhou wishes to write about Teresa, who is not old enough to fully understand the implications of granting consent, involving her parents in the decision making will necessarily compromise her confidentiality and may jeopardize Teresa’s trust and the therapeutic relationship. If Dr. Zhou does not ask permission and uses only disguise, how likely is it that Teresa will be recognizable to herself or her parents if they read the paper? If Teresa does recognize herself, can she talk openly and honestly with Dr. Zhou about her reactions? Has Dr. Zhou considered how she would respond? How it might affect the treatment? If she decides to ask permission, is she ready to accept a refusal? If Teresa or her family wish her to alter or omit parts of what she has written, would she be willing to do so or not pursue publication?
There are no clear answers, only self-scrutiny, seeking consultation, and using one’s judgment.
Since Teresa is a minor and parental consent would be needed, confidentiality would be broken. Such a breach of confidentiality could jeopardize her treatment. Therefore, unless Dr. Zhou can find a way to adequately disguise her patient so she feels reasonably sure that neither Teresa nor her parents will recognize themselves, I believe she should not publish this case.