Above all else, can we consider the human costs?

©Copyright 2011 Paula J. Caplan All rights reserved

Last Monday's one-hour conference call (see two previous essays here) - on which three psychiatric diagnostic manual editors' remarks took up way over half the time, and six of the 20 consumer representatives invited to the call were each allowed to speak for less than two minutes - revealed much cause for alarm.

I have described at length some of the concerns about the procedures being followed as the world's most powerful psychiatrists prepare the next edition of the psychiatric manual, the Diagnostic and Statistical Manual of Mental Disorders (DSM). [1] Here I will address just a few of the vast number of concerns about the likely content. I will start with some that came up in the conference call.

Dr. Darrel Regier, introduced as second in command of DSM-5, announced that their edition would be differently organized than previous editions. Why? To reflect "what we've learned about the brain, behavior, and genetics during the past two decades." The example he offered was that they plan to drop the chapter referring to disorders arising in infancy, childhood, and adolescence and instead use "Neurodevelopmental Disorders." The aim: To "call attention to underlying vulnerabilities."

It's hard to know where to begin to address the problems in that decision, including the implication that very much is known about about those underlying vulnerabilities. To begin with, far less is known about relationships between brain and emotions, especially emotional suffering, than many people believe. Even when correlations are found between something in the brain and some emotion, mood, or behavior, we can rarely tell whether something in the brain led to the latter or whether the latter led to a change in the brain. Even if we knew much about the cause-effect direction, that is usually lightyears away from knowing what changes (in behavior, brain, chemicals, or both) will be helpful and which carry serious risks of harm. This does not prevent laypeople and many scientists from making claims that go beyond what the data prove. In a fascinating and important study, people who read a research report that included an illustration of a brain scan were more likely to accept the claims in the article, even if they seemed hard to believe, than if they read the identical report with the picture of the brain omitted. [2]

To keep this essay from becoming unduly technical, I refer readers interested in a detailed description of some of the most important limitations on what can be concluded about brain-behavior relationships to Chapter 7 of Thinking Critically about Research on Sex and Gender, [3] which applies to research not only about sex and gender but about the brain more generally.

It is often disappointing to see how uncritically not only those who compile the DSM but also many other psychiatrists, psychologists, and social workers read the relevant research. The longer I work in this field, the more I learn about the limitations of what is known. It is terribly difficult to do illuminating research about human behavior on its own, given its complexity and both the ethical and the practical limitations on what we can and cannot manipulate; it is far more difficult to try to understand correlations, never mind cause-effect directionality, between behavior and the brain or genetics.

Those who care about human suffering want to find ways to help. That undoubtedly explains partly the rush by researchers, clinicians, sufferers, their loved ones, and people in the media to believe that we know more than we actually do. In this connection, it was surprising but encouraging that major spokespeople for pharmaceutical companies recently announced drastic cutbacks to their investments in psychiatric drugs. They said that after many decades of research, very little is still understood about how the brain works. When huge companies with major profit motives cut back on cash cows like psychotropic drugs, we need to take notice.

What I am saying here, in case you think I am beating around the bush, is that those who proudly trumpet this structural change in the DSM's chapters have not done enough critical thinking. They have also failed to draw on the compassion I know some of them to have, for this change can only increase the unwarranted aura of scientific precision that surrounds their manual. And because it is unwarranted, it leads suffering people and their loved ones to put their hopes in the wrong places.

With regard to that lack of critical thinking about research, I keep recalling a conversation I had with a major DSM player back in 1986. He and I participated in an American Psychiatric Association debate about a new category that someone had thought up. In the debate, I focused on the poor methodology of the related research (methodology is one of my areas of specialization). A few days later, the phone rang in my home in Toronto, and it was that psychiatrist calling to say how much he admired the critique of his research. Asking if I would send him a copy of what I had said in the debate, he pointed out, "In medical school, we are not taught how to do research or how to think about research." He said he hoped to learn from my paper. I wish I could tell you that medical school curricula have generally improved on that score, but they have not. And many physicians, well-educated and intelligent though they are in other ways, consider themselves too unschooled about brain functioning, genetics, or psychiatric drugs even to try to read the research critically. As a result, far too many continue to believe what the headlines - in medical, other scholarly, or popular publications - tell them. And far too many continue to listen to the representatives of drug and medical equipment companies.

The first question from a consumer representative on the conference call came from a man called (if I heard correctly) Ken Duckworth. He was said to represent the National Alliance for the Mentally Ill and inquired what was happening with the proposal to add to the manual a category called Attenuated Psychosis Syndrome (APS). Although the proposal's advocates say that including it will allow for early identification of people who are going to become psychotic, the data simply do not support that claim, and alarm about the application of a label implying serious emotional trouble lies ahead sprang up as soon as the proposal was announced. Both well-respected professionals and laypeople share the alarm. [4]

Regier responded to Duckworth by saying they are trying to find 50 patients who "qualify for this diagnosis" and will compare them to people who have been classified in other categories considered to be severe problems, such as schizophrenia and major personality disorders. One of the many major problems with that study is this: The DSM authors themselves have conducted research showing that there is notoriously poor agreement between any two clinicians about what diagnosis to apply to a patient. [5] The studies showed such poor agreement that the absurdity of basing treatment decisions on diagnosis is apparent. As a character says in my play, CALL ME CRAZY, in a scene called "Dueling Jargons": "Well, if therapists don't even agree on what's wrong with a patient, where do you even start? Do you choose treatment based on Dr. X's diagnosis or Dr. Y's? Do the therapists fight it out?" So with this newly-minted diagnosis of Attenuated Psychosis Syndrome, what do we think we will learn if we compare people placed in that manufactured category to those who have been placed in other categories for which inter-therapist agreement is poor? [6] An entire monograph could be written as a critique of that study.

In further response to the question about APS, a DSM-5 representative (he did not identify himself at that point, and I could not tell who he was) made a comment that is relevant to many diagnoses. He said that "there is no reason to believe" that people given that label "will be medicated." With regard to that category as well as many others, it is instructive that the prescribing of psychiatric drugs for a vast array of DSM labels has skyrocketed in recent decades, and though some people have been helped by some of these drugs, as Robert L. Whitaker's painstakingly documented book, Anatomy of an Epidemic, [7] shows, far more have been harmed. In fact, DSM-IV head Allen Frances (his Psychology Today blog is filled with concerns about the DSM) has bravely come forward with a mea culpa about the massive overdiagnosis of Bipolar Disorder after its inclusion in DSM-IV.[8] Just think how it would feel to be diagnosed with a crystal-ball diagnosis like APS, foretelling without scientific basis your doom?

We are asked to believe that there is no reason to think that people diagnosed with APS would be medicated. But psychiatric medication is increasingly the first and often all that is offered for nearly every diagnosis these days.

Yesterday, the DSM-5 editors put their latest updates online at www.dsm5.org. I feared that, based on last Monday's conference call and on the past quarter of a century that I have spent studying the world of the psychiatric manual, it would be disappointing to look at that site. Just now, I gathered my courage - well, just a bit, because I could only bring myself to look at the top of the first page so far - and was disappointed but not surprised by what I saw. Right there in paragraph 1 is the astonishingly false description of "Premenstrual Dysphoric Disorder" (PMDD) as a "newly-proposed" disorder. Since back in 1985 it was the invention of that category by two male psychiatrists at the top of the DSM hierarchy that helped lead me into the study of psychiatric diagnosis, and since PMDD went into the 1987 edition and remained in there for the next and current one, does anyone want to guess why they would call it "newly-proposed"? And on page 1 of their public site? I shall not begin here to write about the many serious problems with the PMDD category itself and the ways that politics and the profit motive have determined what has happened with it, but I've written numerous book chapters and journal articles, as well as popular pieces about it, [9] and I may address it here at a later time.

I urge readers, however, to look at the DSM site and, if you are so moved, to leave comments there and post a copy at the end of this essay.

A university press editor asked me a few years ago to write a book about DSM-5. I respectfully declined the invitation. I explained that after attempting to do both scholarly work, public education, and action about the problems with psychiatric diagnosis and the harm that results from it, I felt demoralized even thinking of it. Through the years, the diagnostic enterprise only snowballs, and its effects range wider and hurt more people. I also explained that, if history indicates the future, those who disagree with the manual's authors would be largely ignored, the evidence of damage to human lives would be largely shoved aside, and the authors would ultimately - even after requesting input to give the impression of openness to debate and willingness to look at facts - put in the next edition of the manual whatever they pleased and would then feel free to misrepresent whatever they chose. I said that historically, they would proceed in a way that would make it impossible to know what they were doing any time they did not want us to know and that their immersion in their own world blinded them to the awful suffering of those whose lives diagnosis had ruined.[10] I have not sought out those who suffer because of diagnosis, but in various ways they have come to me, and the knowledge of their suffering is always there. As of now, I see no reason to think that what I told that editor was wrong.

I urge you to look at the Comments that people posted after Part 1 and Part 2 of my "What? Psychiatrists Now Define ‘Openness'?" here. They are heartfelt and interesting, and I want to respond to them in a later essay, because they deserve care and thought.

[1] American Psychiatric Association. (1994). Diagnostic and Statistical Manual of Mental Disorders-IV. Washington, D.C.: American Psychiatric Association.
[2]M. Hutson. (2007). Neuro-realism. New York Times. December 9.
[3] Paula J. Caplan & Jeremy B. Caplan. (2009). Modern research about sex differences in the brain (Chapter 7). In Paula J. Caplan & Jeremy B. Caplan, Thinking critically about research on sex and gender. Boston: Pearson, pp. 58-64.
[4] For instance, see Schizophrenia Research Forum, Live Discussion: Is the Risk Syndrome for Psychosis risky Business? http://www.schizophreniaforum.org/for/live/transcript.asp?liveID=68
[5] Paula J. Caplan. (1995). They Say You're Crazy: How the World's Most Powerful Psychiatrists Decide Who's Normal. New York: Addison-Wesley.
[6] Caplan, 1995.
[7] Robert L. Whitaker. (2010). Anatomy of an Epidemic. Crown.
[8] [4] for instance, see http://real-agenda.com/2011/01/26/mental-illness-is-impossible-to-define/
[9] See index of Caplan (1995) for much information about the debate and research related to PMDD, as well as:
Paula J. Caplan; McCurdy-Myers, Joan; & Gans, Maureen. Should "premenstrual syndrome" be called a psychiatric abnormality? Feminism and Psychology, 2, 1992, 27 44.
Paula J. Caplan; McCurdy-Myers, Joan; & Gans, Maureen. Reply to Mary Brown Parlee's commentary on PMS and psychiatric abnormality. Feminism and Psychology, 2, 1992, 109.
Paula J. Caplan. (2001). "Premenstrual mental illness": The truth about Sarafem. The Network News, National Women's Health Network, Washington, D.C.May/June, pp. 1,5,7.
Paula J. Caplan. (2008). Pathologizing your period. Ms. Magazine. Summer, pp. 63-4.
Joan Chrisler & Paula J. Caplan. (2002). The strange case of Dr. Jekyll and Ms. Hyde: How PMS became a cultural phenomenon and a psychiatric disorder. Annual Review of Sex Research 13, 274-306.

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[10] See psychdiagnosis.net for 53 stories of people whose lives have been ruined in different ways by psychiatric diagnosis

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