Jeste wasn’t entirely happy with the committee’s solution. “It really doesn’t make any sense,” he said. He wasn’t talking about the way that the diagnosis, as he acknowledged a few sentences later, is only an exaggerated version of the normal cognitive decline that sets in after age fifty. But he pointed out that if there was going to be a Major Neurocognitive Disorder, “it should be minor versus major, not mild.” He solicited better suggestions from the audience. None was forthcoming.
But there is more than money in a name. Neurocognitive Disorder, however you qualified it, was a reworking of a DSM-IV label that was itself pretty tarnished, and getting more so as baby boomers aged: Dementia. “It’s a pejorative term,” Jeste said, because it came from the Greek for “losing one’s mind.” And no matter how much those of us over fifty might grouse privately that we’re losing our minds along with our memories, we really don’t want our doctors to agree with us, at least not officially, and surely not on our permanent medical dossier, not while the problem is still mild (or minor). Even in the later stages of Alzheimer’s, an undeniably major cognitive disorder, dementia might carry too much stigma, Jeste added. On the other hand, most people with major neurocognitive disorders eventually did lose their minds. So the work group decided to name the new diagnosis Major Neurocognitive Disorder (Dementia), and then, once the DSM-5 came out, to “let the marketplace decide.”
That’s probably not how Darrel Regier would have put it. He probably would have said, “Let the hypotheses be tested.” Still, the relabeling tactics helped to fill in the blank Regier had left when he didn’t get back to the Psychiatric News about the fate of the public suggestions. The kvetchers had been turned into a focus group, and, evidently, the diagnoses that didn’t meet with market approval would be rebranded.
• • •
Jeste’s talk was part of the APA’s 2011 annual meeting, held in Honolulu. “Attire is ‘aloha business/casual2.’ No suits, ties or fancy dresses,” the website proclaimed, and many of the ten thousand psychiatrists in the soaring open-air atrium of the Hawaii Conference Center dutifully sported muumuus and Hawaiian shirts. The theme of the convention was “Transforming Mental Health Through Leadership, Discovery, and Collaboration,” but the APA leadership had discovered the necessity of keeping their most prominent collaborator at a distance. The conference’s printed program began with a sixteen-page disclosure index in which every speaker divulged whether he or she had taken remuneration from any drug companies (although not how much), information that was repeated at the start of every talk.
Not that the organization thought ties to the drug industry were really a problem anymore. “The APA has a management of conflict process for all [educational] activities,” read the manual. “This process ensures that all conflicts of interest are identified, managed, and resolved prior to the educational activity.” Even so, disclosure before the lecture remained important because an audience that knew “which relevant financial relationships . . . were present and resolved” could assess “the potential for bias” that might have somehow slipped past the conflict managers.
The disclosures weren’t the only way in which the proceedings had been sanitized for our protection. There wasn’t a Prozac pen or a Depakote dealy-bob or any other Pharma swag to be seen in the lobbies or lecture rooms, sponsored lectures were not listed in the main program, and overall industry funding of the meeting was less than $2 million, down from its high in 2006 of more than $6 million. The drug companies had been relegated to the basement exhibition hall, where they competed for the busy psychiatrist’s attention with the mental hospitals and the booksellers and the job recruiters and the shiny-faced men and women hawking neurofeedback gadgets and even a “physical fitness” kiosk where doctors could sharpen their Wii golf skills.
The APA’s attempt to clean up its act had not persuaded its enemies to stand down. The Citizens Commission on Human Rights, the Scientology cadre devoted to tormenting the APA, maintained a steady presence on the curb outside the conference center, handing out flyers that touted an exhibition—Psychiatry: An Industry of Death—it was staging elsewhere in Honolulu. On the flyer’s other side was a rogue’s gallery, complete with photos of Alan Schatzberg, Nada Stotland, Dilip Jeste, David Kupfer, and other industry collaborators. The Honolulu police, when they weren’t enforcing the jaywalking laws, made sure the protesters did not harass the guests.
The opposition wasn’t all behind the barricades. Psychiatrists outside the ten or so sessions related to the DSM could be heard grumbling about rearranged deck chairs, and anyone who stumbled into the “Clinicians’ Impressions of the DSM-5 Personality Disorders” symposium would have heard psychologist Thomas Widiger excoriate the personality disorders work group for courting ridicule and chaos by proposing to wipe out in one stroke five of the DSM-IV’s ten personality disorders and, as if that weren’t bad enough, “invent[ing] out of thin air3” a model of personality pathology that ignored decades of research and then, even more embarrassing, changing its mind repeatedly about how many facets made up a personality and what exactly they were and how they related to one another, before finally advancing a proposal that inspired a virtual mutiny among personality researchers, which in turn persuaded the task force to compel the work group to pull it from the website in favor of a notice to check back later. And, Widiger lamented, even if the particulars weren’t yet worked out and even if this was the stupidest idea to come down the pike in a long time, maybe ever, still it was clear that nothing was going to stop this juggernaut, that when the new version was posted it would be just as bad as the old, thus proving, as Widiger put it, that “like with the Borg, resistance is futile.”
But overall, the protest was nothing like the chaos that had engulfed the meetings in the early 1970s, when gay activists launched their fusillades against the homosexuality diagnosis, or at the end of the decade, when Robert Spitzer and psychoanalysts squared off over the DSM-III. Whatever dissent the DSM-5 might have been sowing scattered quickly in the tropical breezes, which, combined with the Waikiki surf and the palm trees and the dress code, made the open-air atrium feel more like the lobby at a Jimmy Buffet concert than the site of trenchant debates about the nature of human suffering.
If there was any sign of trouble in Margaritaville, it was in the reminders, repeated by Regier and Kupfer at every opportunity, that all was well. The two DSM leaders hadn’t gone the full aloha, settling for open-necked Oxford shirts rather than floral prints on rayon, and they seemed at least a little relaxed. But their stump speeches, with their reminders of all that was wrong with the DSM-IV, their recital of the long effort to fix it, and their reassurances that the revision was “very much on target” for May 2013 had, like the APA’s protestations that it was Pharma-free, more than a faint whiff of defensiveness, as if they felt some urgency to bolster the confidence of the rank and file. Among the loyal, only David Shaffer directly addressed the controversy, and then only fleetingly. “I do sense a reactionary element4 penetrating DSM-5,” he said, “and I hope it goes away.”
• • •
Allen Frances wasn’t in Honolulu, but he hadn’t gone away. In the past few months, his blogs had increasingly addressed the APA leadership directly, imploring them to change course. Privately, he was sending e-mails directly to the few people inside he thought might listen to him. But, at least to judge by his rising stridency and the frustration creeping into his tone, he was pretty sure they weren’t listening.
Michael First, however, didn’t have the luxury of being retired. “I still have to work with these guys,” he said. “And I’ll have to work with them after the DSM-5 comes out.” So he was there, working to maintain what he described as “cordial” relations with Regier and Kupfer and others in the DSM leadership as he continued in his role on the WHO panel formulating the new ICD.
First isn’t exactly a firebrand by temperament. Where Frances shoots from the hip and peppers his salvos with l
iterary and historical references, First sticks to data and the narrowest possible understanding of whatever question is in front of him. Ask him about a diagnostic controversy, and he’ll drill deeply into the research, the specifics of which he will recall nearly perfectly, or he’ll go on about the fine points of establishing reliability, or he will talk about the clinical utility of the diagnosis. If the subject were baseball, he’d be talking about on-base percentage versus run production, while Frances would be wondering if the designated hitter rule violated the pastoral origins of the game and tracing the origins of the question back to Thucydides.
As much as he has devoted his career to all things DSM, First doesn’t think the book has as much social impact as Frances thinks it does. “Allen and I have a big disagreement5 about these epidemics he always talks about,” he told me. “I tend to think he greatly overstates the role of the DSM.” Take ADHD, for example, he said. Frances is sure that simplifying the criteria led directly to the increase in diagnosis and prescription of stimulants to kids. “I completely disagree that what we did in DSM-IV was really responsible for the huge overdiagnosis and overuse of medication. There are all these social factors, and all kinds of reasons why people use diagnoses. The DSM is a very small component.”
But whatever disagreements First had with either side, they weren’t going to be rehearsed at the annual meeting, at least not in the scheduled sessions, which paid scant attention to the brewing controversies. There was a place, however, where conceptual issues were in play: at a Hilton on the other end of Waikiki, where the Association for the Advancement of Philosophy and Psychiatry was holding a confab, “The Future of Psychiatric Nosology,” and where First could be found for the first two days of the meeting. The room’s low ceiling and dingy carpet, its stale, stuffy atmosphere, the balky sound system that at random moments broadcast the signal of a local radio station—all contrasted starkly with the towering grandeur of the convention center. As you wound your way down the short, narrow staircase that connected the room to the elevator stop above, you couldn’t help but think of the film Being John Malkovich and wonder if you had happened upon a real-life 8½th floor.
The thirty or forty people gathered seemed unfazed by their surroundings as they dug into questions such as “What Is It to Be Diagnosed?” and “What Would a Scientific and Valid DSM Look Like?” The group was not without its own rifts—one presenter fired back at his questioner, “If I could be permitted just one ad hominem response, do you treat Posttraumatic Stress Disorder or just cause it?”—but all the participants seemed at home with the apocalyptic tone Jim Phillips, the keynote speaker, conjured in the title of his talk: “Slouching Toward DSM-5.” If the mood up the road at the convention center was breezily optimistic, at the Hilton it was angry, worried, even despairing—not least because of the way concerns about the meaning of diagnosis, its impact on identity, and the seeming impossibility of grafting psychological suffering onto the medical model of disease had been relegated to this dingy outpost, as if the APA didn’t even understand the conceptual complexity, the profound and far-reaching implications of its own product. By the end of the conference, two psychiatrists in the group announced their intentions to leave the field, largely, they said, because they had come to realize that all other forms of resistance were indeed futile. Whatever future psychiatric nosology might have, it seems, they didn’t want any part of it.
Amid all these sweeping critiques and meaty topics—“Metaethics and Mental Illness,” for example, or “Epistemic and Nonepistemic Values in Psychiatry”—First stuck to small ball6. He described how the APA originally justified undertaking the DSM-5 in order to keep in harmony with the World Health Organization’s planned ICD-11, but then the ICD-11 had been delayed, and the U.S. put off implementing the ICD-10, which had come out in 1992 and was the original justification for the DSM-IV, which was therefore still using codes from the ICD-9, but the ICD-10 would finally go into effect in October 2013, which had become the new justification for the DSM-5, but since the DSM-IV had been keyed to the ICD-10, it was not really necessary to revise the manual, only to “crosswalk” the codes. “You might be scratching your head about this,” he said. “You might go, ‘Huh, I’m totally confused here.’”
He was right about that.
But, First continued, a problem much more important and easier to grasp could be seen in the unevenness of the APA’s proposed changes. Take Intermittent Explosive Disorder, for example. “It’s one of the few disorders for which there are no changes proposed,” he said. “Is that because the criteria for IED are so sound that there is no need to change them?” (IED, which got its initials before the war in Iraq made them piquant, is pretty much what it sounds like—a propensity, mostly among children and adolescents, to become quickly and unpredictably enraged, and then quickly return to normal.) He pointed out that IED is one of those “socially constructed, I-don’t-know-what-it-means” diagnoses, one that you would think any major revision would reconsider. But, he explained, no one on the work group seemed interested in IED (or, he added, in two other impulse-control disorders—kleptomania and pyromania). It wasn’t anyone’s pet project, so the criteria had been left unmolested.*
On the other hand, he continued, consider Specific Phobia, described in the DSM-IV as a “marked and persistent fear cued by . . . a specific object.” There was apparently no shortage of experts interested in this one, with the predictable result. First flashed a PowerPoint slide on which he had highlighted the differences between the existing and the proposed criteria. The text was a jumble of cross-outs and underlines. “Marked and persistent fear that is excessive or unreasonable, cued by the presence or anticipation of a specific object” had become “marked fear or anxiety about a specific object or situation.” An entire criterion—that the patient recognize the fear as excessive or unreasonable—had been deleted in favor of a requirement that the clinician determine if it is out of proportion to the actual danger (but only after taking into consideration the “sociocultural context”). “Avoidance, anxious anticipation, or distress” had become “fear, anxiety, or avoidance.”
An expert flaps his mouth in New York or Washington, and chaos breaks out in Peoria—an outcome made more vexing, First pointed out, by the fact that these changes seem to be made for the sake of change, to fix diagnoses that aren’t broken. “Why did this happen?” he asked. The answer lies not in science, but in sociology, in what he called the work group effect. “If you get a group of people doing weekly conference calls for three years, you are going to get lots and lots of changes,” he said. “We’re dealing with human nature here. Why would someone clamor for a position where they spend five years of their lives doing a lot of work for nothing? The reward is to get your view of the world embedded in the DSM.”
• • •
It’s Monday, the third day of the annual meeting, and the AAPP conference is over. First has settled into a seat to watch Kupfer and Regier demonstrate7 how they expect clinicians to use the DSM-5 to reach diagnoses, or at least how they will do it in the field trials. This will also be their first opportunity to show off their long-anticipated dimensional assessment methods and perhaps answer some of the questions about proposals such as the move to eliminate Asperger’s.
The room is set up for a couple hundred people. About twenty-five have straggled in. If Regier is disappointed by the turnout, he’s not saying. Neither is he waiting for latecomers, although he might privately be cursing the scheduler who put this workshop on at noon, the hour at which drug companies like to put on shows while psychiatrists enjoy their box lunches.
You can’t blame him for wanting to get started. For nearly two years, he has been responding to worries about the unreadiness of the new criteria and the unwieldiness of the dimensional assessments with some version of the response he gave me in September 2010 when I repeated those charges: “That’s why we are doing a field test8,” he said, and he added that the trials would beg
in soon.
A month after that conversation, on October 5, the APA sent out a press release. The field trials had started, it declared, and it described “two rigorous study designs9.” In one, to be conducted at eleven medical centers across North America, two different clinicians would use the new criteria and the dimensional measures to independently evaluate the same patient. To the extent that they agreed, the diagnoses would be seen as reliable. Videotapes of their work would be reviewed by a third clinician, this one considered an expert, to see if either or both of them had come up with a valid diagnosis. The participants would then rate the usefulness of the new procedures. In the second design, called the Routine Clinical Practice (RCP) trial, 3,900 mental health professionals in private offices would evaluate two patients, also using the new criteria and dimensions. They would repeat the procedure with the same patients a couple of weeks or so later, and the results would be compared. The information generated from the two studies would be fed back to the work groups, who would tweak the criteria accordingly and return them to the field trialists for a second round of testing. “Field trials will give us the information we need to ensure the diagnostic criteria are useful and accurate,” Regier said.
The release didn’t mention that the field trials were already five months late. But that’s not all it left out. It also failed to say what Regier had to admit when I asked him directly the next day: that they really hadn’t begun at all. What had started was only a pilot study designed to shake the bugs out of the protocols for the medical center trials. This research had to be finished, its data analyzed, the methodology modified according to the findings, and the clinicians trained before the field trial itself could begin in earnest. He couldn’t say when this would happen or, for that matter, when the 3,900 practitioners—a number that would soon go up without explanation to 5,000—in the routine practice study would get their marching orders.
The Book of Woe: The DSM and the Unmaking of Psychiatry Page 23
