50 Shades of Misdiagnosis

February 18, 2020

"The idea of seeing a patient, not just a diagnostic label, is an extremely valuable lesson. Being primed to see certain behaviors as pathological in certain contexts and perfectly normal in others is something that all doctors should be aware of." -Susannah Cahalan

A Conversation in Critical Psychiatry with Susannah Cahalan.

CONVERSATIONS IN CRITICAL PSYCHIATRY

Susannah Cahalan is an award-winning American journalist and author. She is best known for her New York Times bestselling memoir Brain on Fire: My Month of Madness (2012), a narrative account of her struggle with anti-NMDA receptor encephalitis, a rare autoimmune disease that often masquerades as psychiatric illness. Indeed, she was misdiagnosed initially as suffering from bipolar disorder and schizoaffective disorder before a correct diagnosis was made by a thoughtful and empathic neurologist. Her account of illness has been of great interest to psychiatrists as well as other medical specialists, and she spoke at the opening session of the 2017 annual meeting of the American Psychiatric Association.

Her second book is The Great Pretender: The Undercover Mission That Changed Our Understanding of Madness. It is an in-depth investigation into the famous Rosenhan experiment, the results of which were published in 1973 in a paper titled “On Being Sane in Insane Places1 in the journal Science.

In Rosenhan’s study 8 healthy volunteers feigned hearing voices to gain admission to 12 psychiatric hospitals. Once admitted, the “pseudopatients” acted like their normal selves, but once labelled as psychotic even their normal behaviors were seen through a pathological lens by the hospital staff. Nearly all were diagnosed with schizophrenia and forced to take antipsychotic medications.

The study challenged the reliability of the notion of mental illness and highlighted the dehumanizing conditions of psychiatric hospitals, and it received tremendous attention throughout the country. Cahalan’s research for the book initially started off as a celebration of the study, however, the more she investigated, the more contradictions and discrepancies she found between the published paper and Rosenhan's unpublished documents as well as other study related materials. For instance, Rosenhan was the first pseudopatient in his own study and his medical records reveal that he had not merely feigned auditory hallucinations but had also reported suicidal ideation and behaviors such as putting a copper pot over his head. There were also various odd numerical inconsistencies in data. Added to this, despite years of searching, Cahalan was only able to identify and locate two other participants of the experiment, one of whom had in fact had a positive experience of his psychiatric hospitalization, but his experience was excluded from the study by Rosenhan.

After uncovering all this, Cahalan began to contemplate the possibility that some pseudopatients mentioned in the study may never have existed and the corresponding data may have been fabricated by Rosenhan. In addition to offering an in-depth investigation of the experiment and an illuminating discussion of the impact the published paper has had on psychiatry, The Great Pretender also provides a nuanced overview of psychiatry’s current struggles, going into issues such as the lack of validity and reification of DSM diagnoses, and the consequences of deinstitutionalization in USA which, coupled with lack of community care services, has resulted in a mass movement of individuals with serious mental illness from hospitals to prisons. Over-all it's a highly thought-provoking book, and I'm glad Ms Cahalan agreed to shed more light into her insights through this exchange with me.

Aftab: “If sanity and insanity exist, how shall we know them?” It’s clear that you were fascinated by this question posed by Rosenhan. Years of research and a book later, are you any closer to answering this question?

Cahalan: Oh, I don’t think so. Something I learned was the idea of “sanity” and “insanity” (of course inappropriate terms) being fixed or rigid conditions is just not the case. We all, or at least many of us, slide over these lines during the course of our lives.

Aftab: Based on the evidence you have uncovered do you think Science should retract Rosenhan's paper?

Cahalan: It has been so long now, what good would that do? Instead, I would love for a conversation to develop about how we allowed this to happen, what can we do with this information to move forward in a more honest direction.

Aftab: Is it possible that we may be overestimating the impact of Rosenhan's paper on subsequent history of psychiatry? The study was sensational, it was flashy, it got a lot of press, it provided a lot of ammunition to psychiatric critics, but even if the Rosenhan paper had never been published, major events such as deinstitutionalization and Spitzer’s development of DSM-III would still have happened. Andrew Scull, for instance, writes: “deinstitutionalization was driven in great measure by fiscal concerns, and in the United States by the ability to transfer costs between levels of government. And it suggested that the rhetoric of reform masked what was an emerging policy of malign neglect.”2(p3) I guess we can say that Rosenhan’s study provided fuel for the “rhetoric of reform” but to what extent was it responsible for any substantial change?

Cahalan: I think that you always have to follow the money-you’re correct. But I do think that the rhetoric of change became so extreme and so ham-fisted and I think that this study contributed to that extreme reaction. I also think that once you trace psychiatry’s reaction to the study-the embarrassment, the subsequent influence it had on the creation of the DSM, the effect on the growing distrust that the general public had about the field-I think when you stack all these elements up then you see the inflated influence that this study had and continues to have.

Aftab: What made you relate to Rosenhan’s study on a personal level? To be honest, I have not fully appreciated why you thought of yourself as a “modern day pseudopatient” when you heard about Rosenhan’s study. Your case of misdiagnosis-mistaking autoimmune encephalitis for schizoaffective or bipolar disorder-was very different from the scenarios of feigned psychotic symptoms orchestrated by Rosenhan.

Cahalan: I considered myself a modern pseudopatient in the way that my diagnosis tested the validity of psychiatry’s diagnoses. If someone who had the same presentation as I did was misdiagnosed for two years with schizophrenia, when she in fact had autoimmune encephalitis, what does that say about our understanding of schizophrenia? Rosenhan’s study revealed psychiatry’s limitations and I think that my story (or rather the story of my mirror image, the woman misdiagnosed) does, too. I also felt a difference in treatment between when my symptoms were caused by a “mental” condition, versus a “physical” one-and this was explored, though is often not focused on, in the Rosenhan’s study and it really struck a nerve with me.

Aftab: In the phase 2 of Rosenhan’s study he challenged an offended hospital to detect pseudopatients that he will be sending to them in the following weeks. The staff identified more than 40 patients as potential pseudopatients, but in fact Rosenhan had sent no pseudopatients to the hospital. This outcome is seen as very embarrassing and the general assumption has been that the hospital staff was mistaken, but I am not so sure. At least some of these suspected pseudopatients may actually have been malingerers. I think the general public underestimates the degree of malingering that occurs on inpatient psychiatric units (as well as medical emergency rooms). Clinicians are often able to identify patients who are malingering but in most healthcare settings they have little incentive to call it out. Rosenhan’s study provided an incentive, so the fact that the hospital staff suspected a substantial number of patients to have been psuedopatients doesn't strike me as ridiculous. What do you think?

Cahalan: I think that’s an interesting point. I will also point out that there is no evidence that he actually did phase 2 part of the study, so who knows if what he said happened actually did.

Aftab: It seems that there are multiple layers of irony in the story of Rosenhan’s paper. Just as Rosenhan and his subjects were pretending to be psychotic, similarly Rosenhan's paper was pretending to be scientific and factual. By deliberately sneaking pseudo-science into science, do you think Rosenhan may have intended it to be a sort of meta-prank?

Cahalan: I love this! I think you may be giving him too much credit, but I do enjoy the thought that this might have been the ultimate academic Punked moment.

Aftab: The distinction between physical and mental illness breaks down under scrutiny, as you acknowledge, but I think so does the distinction between ordinary suffering and mental illness. Our answer to the invalidity of former distinction cannot be “all psychiatric conditions are brain diseases” since that opens the door to widespread medicalization. What is needed instead is a nuanced deconstruction of these categories. Would you agree?

Cahalan: I completely agree. Before I embarked on this, I thought that the bio/bio/bio approach was the answer. But it’s not. I think that in saying these are all brain diseases actually lets doctors off the hook from doing the hardest part of the job: truly caring for and listening to patients.

Aftab: Your experience of undergoing the Structured Clinical Interview for DSM Disorders (SCID) was one of the most memorable parts of the book for me, and I think you highlight the procrustean nature of the assessment quite well. You write at one point, “I couldn’t believe it. I had a more precise view of my illness than most-especially a psychiatric one-since I had spent a year writing and researching it and the past four years talking endlessly about it. I still couldn’t adequately answer his rigid questions.” Do you think the DSM approach has focused on reliability to such a degree that it has lost the appreciation of the individuality of human suffering?

Cahalan: I do. I think that trying to place patients into these uniform boxes is far too simplistic/reductive. You miss out on so much of the patient experience. This is true for all of medicine, but especially anything to do with the mind/brain.

Aftab: Robert Spitzer knew that Rosenhan had misrepresented the details of his psychiatric hospitalization. You speculate that Spitzer may have chosen not to reveal this so that he could use the publicity surrounding the Rosenhan study to implement his vision of revamping psychiatric diagnosis. Could there be a more benign reason, for instance, he may have had concerns about the ethics of revealing details of Rosenhan’s medical records without his permission?

Cahalan: That certainly could be. I didn’t get to interview him so it’s all speculation.

Aftab: It was very fascinating for me to read the reactions of psychiatrists to your work on Rosenhan, and how many of them reacted as if you were attacking psychiatry even though you were pointing out problems with a study that is considered to be “anti-psychiatry.” What explains this love-hate relationship of psychiatric community with the study?

Cahalan: I think that perhaps if you prop the study up as an example of how far the field has come-as in “see this would never happen now”-and then you expose the study to be flawed, it messes with this idea of linear progress. That’s my thought, at least. I’d be curious to hear what you think.

Aftab: Your answer makes a lot of sense and probably accounts for a great deal of the hostile response. Also, a critical examination of the paper reopens old wounds. Even though the article is decades old, reading it today still stings. Psychiatric community’s response to the experiment was contradictory even when it came out-there was an impulse to discredit it entirely which co-existed with the impulse to be outraged at the state of affairs and to call for reform. Even though you criticize the study, by placing the study in the context of your personal story of misdiagnosis, you give it a new life, and I think people struggle to respond to that, and resultantly get angry.

Despite the exaggerations and fabrications in Rosenhan’s paper, you seem to think that it still has some wisdom to offer us. What relevance do you think the study has for contemporary psychiatry?

Cahalan: I still think that the idea of seeing a patient, not just a diagnostic label, is an extremely valuable lesson. I also believe that his statements about being primed to see certain behaviors as pathological in certain contexts and perfectly normal in others is something that all doctors should be aware of. Those parts of the paper, I believe, still have value.

Aftab: During the course of your research work for The Great Pretender, did you come across books that changed the way your think of psychiatry, and which you think psychiatrists, especially trainee psychiatrists, should also read in order to broaden their understanding of their own field?

Cahalan: A few responses: I think you have to know your history so any book by Andrew Scull, especially Madness in Civilization are must-reads. I also believe it’s so important to relate to the patient on the personal level and try to understand what it’s like to experience the symptoms you’re trying to treat, so I would recommend Esme Wang’s The Collected Schizophrenias, a beautiful essay collection about her experiences with schizoaffective disorder. And then I believe all doctors-not just psychiatrists-should read the work of Richard Asher. He’s not well known (he coined the term Munchausen syndrome) but he is so prescient, a beautiful writer, and he was beating the drum about using common sense (and your five senses) with your patients and the issues with overspecialization and threats that tech might have on clinical relationship long before it was fashionable.

Aftab: Thank you!

The opinions expressed in the interviews are those of the participants and do not necessarily reflect the opinions of Psychiatric Times.

Dr Aftab is a psychiatrist in Cleveland, OH. He is a member of the executive council of Association for the Advancement of Philosophy and Psychiatry and has been actively involved in initiatives to educate psychiatrists and trainees on the intersection of philosophy and psychiatry. He is also a member of the Psychiatric Times Advisory Board. He can be reached at awaisaftab@gmail.com or on twitter @awaisaftab.

Previously in Conversations in Critical Psychiatry

Relentless Warrior for Mental Health: Allen Frances, MD

The Structure of Psychiatric Revolutions: Anne Harrington, DPhil

Skepticism of the Gentle Variety: Derek Bolton, PhD

Explanatory Methods in Psychiatry: The Importance of Perspectives: Paul R. McHugh, MD

Chaos Theory With a Human Face: Dr Niall McLaren

The Rise and Fall of Pragmatism in Psychiatry: S. Nassir Ghaemi, MD, MPH

Integrating Academic Inquiry and Reformist Activism in Psychiatry: Sandra Steingard, MD, and G. Scott Waterman, MD

Social Constructionism Meets Aging and Dementia: Peter Whitehouse, MD, PhD

Disclosures:

Dr Aftab and Ms Cahalan have no conflicts of interest concerning the subject matter of this article.

References:

 

1. Rosenhan DL. On Being Sane in Insane Places. Science. 1973;179:250-258.

2. Scull A. Psychiatry and Its Discontents. Oakland, CA: University of California Press; 2019.