The Book of Woe: The DSM and the Unmaking of Psychiatry

by Gary Greenberg

  Two years later, in fall 2010, Scully tried to be philosophical about this drama—“I suppose that’s the nature of the scientific process; scientists argue with each other”—but he was leaning forward, bouncing his arms on his knees, like he was having a little trouble staying in his seat. He is a big man, a blue-eyed blond with fair skin that flushes when he’s mad, which he was now that I had brought up this subject. He was evidently still smarting from the attack, which he thought was “pretty personal” and totally misplaced. In fact, Scully said, anyone was free to say anything. He didn’t mention the part about getting permission.

  Neither did Darrel Regier. In our interview the next day, I told him about a work group member, a psychiatrist who would talk to me only anonymously and who had declined to ask permission—for fear, he said, of “reprisal.” Regier wanted to know8 who the doctor was.

  I described a conversation I’d had recently with a psychiatrist named Sid Zisook. Thinking he was a task force member, I had asked Zisook if he had reservations about letting me interview him. “I’m not on the task force9,” he told me. “And if I were, I wouldn’t be talking to you.”

  “Sid said this?” Regier asked. He looked wounded.

  David Kupfer had joined us by phone from his office in Pittsburgh, so I couldn’t see his reaction. But there was hurt in his voice as he explained that he had “encouraged everybody to talk”—so much so, he said, that colleagues in other specialties were saying, “My God! Nothing like this has ever happened in internal medicine or pediatrics. You guys are pretty brave to put all that stuff out there.”

  Before I could ask Kupfer if he was calling Zisook a coward, Regier spoke up. “I’m putting myself in Sid’s shoes,” he said. “I think the secrecy stuff was so well sold by some of our critics that even some of our friends started to believe it.”

  And it’s not only the critics who had victimized the APA. It was also their own people, although not the psychiatrists. “Unfortunately, the lawyers . . . It’s a misnamed thing,” Scully said. All the lawyers were interested in was “protecting the integrity and value of the DSM-V.” The gag order was actually an “intellectual property agreement” designed to prevent anyone from using “material that belongs to the APA” for their own personal enrichment. And this wasn’t just any intellectual property, but one that “we’re putting $25 million into creating” and whose value could be diluted if some unscrupulous psychiatrist decided to publish his own DSM, or maybe write an embarrassing tell-all musical. This was what the lawyers had failed to make clear, what Spitzer had misunderstood, and what made the wound he inflicted all the more grievous: that the APA, like any corporation, had to protect its brand against pirates and bad publicity.

  • • •

  “We have enemies10,” APA president Nada Stotland told her troops as they assembled for their 162nd annual meeting in May 2009. Antipsychiatry was alive and well, and its troops would be sure “to use doubts about the DSM to undermine our profession.” It was as if only people out to get the APA would question its credibility.

  Stotland didn’t say exactly whom she had in mind, although she did mention the Church of Scientology, whose most prominent member, Tom Cruise, had publicly scolded his ex, Brooke Shields, for taking Paxil and then told NBC’s Matt Lauer that “psychiatry is a pseudoscience11” and “there is no such thing as a chemical imbalance.” Stotland probably would have counted those pesky transsexuals among them as well. But it’s a safe bet that she wasn’t thinking of Allen Frances and Bob Spitzer. On the other hand, she gave the speech the night before Will Carpenter pulled Frances’s trigger.

  Frances didn’t bother with warning shots. In July 2009, he fired off a full-on salvo from his BlackBerry—his sole link to the Internet, which he’d purchased a couple of years previously, and only after “Michael First shamed me into it12” by telling him that if he didn’t have a link to the Internet, Frances’s grandchildren would come to regard him as he had regarded his Yiddish-speaking grandfather. It was the first time he’d used the device for anything other than e-mail.

  The three-thousand-word missive ended up in the June 26 issue of the Psychiatric Times. Under the headline “A Warning Sign on the Road to DSM-V: Beware of Its Unintended Consequences,” Frances wrote that his successors had “displayed the most unhappy combination of soaring ambition and weak methodology.” Their attempt to effect a paradigm change was “absurdly premature.” They were heedless of the fact that because psychiatry was “stuck at its current descriptive level . . . until we make a fundamental leap in our understanding of what causes mental disorders . . . there is little to be gained and much to be lost in . . . changing the system.” They had compounded that error by populating the work groups with experts from “the atypical setting of university psychiatry,” whose clinical experience was limited to “highly select patients treated in a research context” and who tended to be far more worried about “missed cases” than about diagnosing people with illnesses who weren’t really sick. The task force had given them precious little guidance, leaving the experts free to pursue their pet projects, like Psychosis Risk Syndrome. And they were preparing to field-test the new diagnoses, using them with real patients in the controlled settings of academic medical centers, without having first subjected the new criteria to outside scrutiny and then refined them, as Frances had in the DSM-IV. Conducting a field trial on what amounted to a rough draft of the new DSM would be “flying blind.” It couldn’t possibly tell psychiatrists anything about how the final draft would perform in the real world.

  This was Frances’s biggest complaint: that the DSM-5 leaders seemed heedless of the way that the new revision threatened to put psychiatry even more into the “business of manufacturing mental disorders” and that those lowered thresholds and new diagnoses and revamped criteria would touch off diagnostic epidemics. “The result would be a wholesale imperial medicalization of normality,” he wrote, “a bonanza for the pharmaceutical industry but at a huge cost to the new patients caught in the excessively wide DSM-V net.” Operating in an echo chamber of experts, secretive and sealed off from outside views by its “ludicrous confidentiality agreements,” the task force couldn’t even see how far off course it had veered. Neither could it grasp how far behind schedule it already was, how time pressure would “soon lead to an unconsidered rush of last-minute decisions.” Barring a “midterm course correction”—which Frances thought required the appointment of an external review committee with no ties to the DSM—the DSM-5 would be “an embarrassment and a burden to the field,” creating problems that would “haunt psychiatry for many years to come.”

  The APA didn’t waste any time firing back. “Setting the Record Straight13” appeared in the next week’s issue of the Psychiatric Times under the byline of the organization’s new president, Alan Schatzberg (the Stanford psychiatrist whose drug company ties had raised Grassley’s dander), along with Scully, Regier, and Kupfer. They accused Frances, as they had Spitzer before him, of launching his salvo with “disregard for the facts”; taken together, these were “unjustified ad hominem attacks” to which the APA now reluctantly had to respond.

  “The process for developing the DSM-V has been the most inclusive ever,” they wrote. More than 400 scientists and 200 advisers had bolstered the 150 experts from sixteen countries who constituted the task force and work groups. Their discussions had not been inhibited by the confidentiality agreements, nor had any of them been stopped from presenting at professional meetings, in journals, and even “in countless interviews to the mainstream press.” Indeed, if the proceedings were really secret, they asked, then how could Frances have gotten hold of enough information to fashion his litany in the first place? It wasn’t their fault that he had mistaken their drafts as “final decisions, rather than as statements of work in progress.” Far from being secretive, the DSM leaders were really the victims of their own transparency.

  Frances had gotten one thing right
: “The DSM-V work groups were freed from the constraints inherent in DSM-IV’s conservative process.” The task force had not, however, simply emancipated them from Frances’s shackles. They had given the committees marching orders: to optimize clinical utility, to use research evidence to guide their recommendations, and to maintain continuity with previous editions. “We are setting up a process that will allow the new DSM to change with new developments, rather than being reified for a decade or more,” they wrote. The authors didn’t add “like some DSMs we know.”

  Neither did they name Spitzer or Frances when they complained that the “DSM-III categorical diagnoses are now holding us back,” or that the “DSM-IV system poorly reflects the clinical realities of [our] patients,” or that “researchers are skeptical that the existing DSM categories represent a valid basis for scientific investigations.” And they left out Frances’s name when they suggested that what some might see as a revision in disarray and up against time constraints was really only the rapid process made possible “thanks to new publishing technologies, not even imagined in the early 1990s.” The DSM could be nimble, not the lumbering beast Frances had created and with which they were now stuck.

  In case the point wasn’t clear, and speaking of ad hominem attacks, the APA signed off by reminding readers that Frances had promised them a “full disclosure” at the outset of his screed, allowing that “it is reasonable for you to wonder whether I have an inherently conservative bias or am protecting my own DSM-IV baby.”

  “It is unfortunate,” the APA leaders wrote, “that Dr. Frances failed to take this [promise] to heart when he did not disclose his continued financial interests in several publications based on DSM-IV.” As a matter of fact, they went on, he had been informed—at the very same APA meeting at which he had suddenly become galvanized—that his royalties would end upon publication of the new revision. This coincidence, the APA suggested to readers, was something that “should be considered when evaluating his critique and its timing.”

  Allen Frances had made his way onto the APA’s enemies list. Of course, that wasn’t how Schatzberg was going to put it. Nor would Will Carpenter, when he ended his own Psychiatric Times rebuttal by responding to Frances’s charge that the task force was overly ambitious. “Soaring ambition is another matter14,” he wrote. “Here my empathy is with Allen. If I had directed DSM-IV, I imagine that I would think that anyone trying to improve on my work must be very ambitious indeed.” Nor would Renato Alarcon, a work group member, when he suggested, also in the Psychiatric Times, that Frances was “letting nostalgia and passion15 obstruct clarity of vision.” Instead of talking about enemies and taking the risk of sounding even more paranoid, they did what their training told them to do when confronted with disturbing behavior. They offered empathy, even pity, and, of course, a diagnosis.

  • • •

  Not that you need special training to approach enmity in this fashion, although psychiatrists may be better at turning supposed insight into a person’s character into a weapon. Passive aggression may be particularly unseemly when it comes from the people in charge of our mental health, but claiming that a person who disagrees is ill motivated, that his objections are really the result of malfeasance or dishonesty, that if he weren’t deluded by ideology or greed or ignorance, if he weren’t somehow pathological, then he’d come to see things the right way—this is a ubiquitous feature of American political life.

  And here is a place where science, at least the psychiatric form of it, and politics really come together. Whether among senators or psychiatrists, the exchange of diagnoses generates more heat than light, and the smoke it gives off obscures the trouble that gave rise to the disturbing behavior in the first place. But there was one vulnerability that no one, defender or critic, was discussing, at least not in public. Even Frances muted this concern in the blogs he was thumbing out with regularity, which now appeared in Psychology Today as well as the Psychiatric Times. He did, however, address it in a letter to the APA trustees that was also signed by Spitzer. “You must understand16,” they wrote, “that the APA has never held a guarantee on the DSM franchise. There have been serious objections in the past that it is inappropriate for one professional ‘guild’ to control a document with such wide usage and great public health importance.” Frances knew that psychiatrists had been lucky enough to be in the right place—asylums—at a time when the Census Bureau took a sudden interest in counting the insane. History had bestowed the franchise on the APA, and history could take it away—and with it the riches it had brought the guild.

  When Frances and Spitzer warned the trustees that to ignore this was to “bet the house,” they meant that literally. The APA’s financial picture17 was bleak, the organization battered by hard economic times and the partial purge of Pharma. Income from the drug industry, which amounted to more than $19 million in 2006, had shrunk to $11 million by 2009, and was projected to fall even more. Membership was dropping, off by nearly 15 percent from its highs, and with it income from dues and attendance fees. Journal advertising was off by 50 percent from its 2006 high of $10 million. Only the DSM-IV had remained steady, reliably bringing in between $5 and $6 million annually, nearly 10 percent of the APA’s income and just enough to keep the APA in the black. Losing that money could be fatal. The credibility problem first noticed by Thomas Salmon now had a price tag on it.

  The APA already had a competitor for its franchise: the World Health Organization. Its International Classification of Diseases had an entire section devoted to psychiatric disorders. In fact, the diagnosis codes found in the DSM are really taken from the ICD. As Michael First, who now works on the ICD, pointed out, “In reality, clinicians in the United States18, all of us, don’t ever have to buy a copy of the DSM.” Most practitioners don’t know this, he added—at least not yet. But “the franchise depends on the quality of the book. If they put out a crappy product, people could just say, ‘This is so bad, I don’t need to use it anymore. I’ll just go use the ICD.’” And when we therapists go to do that, we will discover something else that most of us don’t know: the ICD, created by a public agency, is available for download19 from the WHO’s website. It won’t take up any space on our bookshelves, and, perhaps its best selling point, anyone can browse it for free.

  That fact is likely to impress many clinicians who think they have to shell out two hundred bucks when the new book comes out, especially when they discover that the ICD is quick and to the point—no checklists to go down, no long pages about prevalence or family characteristics or recording procedures, which are of much less interest than, say, reimbursement rates, to the average clinician. The APA leaders had to know that all the spin control, all the denunciations, all the confidentiality agreements in the world might not be enough to counter the fact that stalwarts like Frances and First were doubting the soundness of the new book. If a crappy product unleashed a public battle, then the rest of us might discover that the DSM was nowhere near as necessary as it had been cracked up to be. That wouldn’t be good for the APA’s bottom line.

  And here is another way in which the politics of DSM resembles the politics of the larger world. For who can doubt that what politicians are really arguing about is money?

  • • •

  Even when they weren’t arguing so openly about dollars—back in the 1970s, before anyone knew that the DSM-III would be a bestseller—the writers of the DSM understood that turning diagnosis into a bureaucratic function left them with only an aspirational relationship to modern medicine. Spitzer may have wrested psychiatry from Freud’s grasp and dipped it into the stream of scientific rhetoric, but where he held it most firmly was where it was the weakest. He had left the profession unable to stave off the next drapetomania, except perhaps on the grounds of decency and common sense—important considerations, but not scientific or immune to local mores.

  Having eliminated theories about the nature and causes of mental illness, Spitzer had also taken
away his colleagues’ ability to draw a line between illness and health. A man may be feeling as fit as a fiddle, but a radiologist who spots a mass in his lung or a cardiologist looking at the results of an echocardiogram might have a better idea about his state of health. A woman may be missing her period, suffering nausea in the morning, and feeling lousy all day, but an obstetrician who can read a blood test can reassure her that she is not sick, only pregnant. But no psychiatrist, listening to a patient’s woes, can listen to his complaints and offer similarly certain appraisals.

  This was not merely an abstract problem for Spitzer. For he was well aware there was at least one group of people who met all the criteria for a mental illness but who, on the other hand, could only be considered sick at the risk of psychiatry’s always fragile credibility. Their existence was confirmed not by an enemy of psychiatry playing gotcha, but by one of the DSM-III’s own—a Washington University psychiatrist and task force member named Paula Clayton. She was part of the team that had perfected the Research Diagnostic Criteria, the prototype of the DSM-III approach, and she had made an unsettling if unsurprising discovery20: people who had recently suffered the death of a loved one often had at least five of the nine symptoms of depression, which meant that if you went strictly by the book, they were mentally ill.

  The grief over grief was a scientific and political disaster waiting to happen. How would it look when clinicians began to diagnose mourners with mental illness and declared for themselves a territory that was among the last bastions of religion? And yet if a clinician, suffering from a sudden attack of common sense, was free to decide that the patient wasn’t really sick even if he met the criteria, then wouldn’t that return psychiatry to the days when clinicians’ assumptions determined the line between illness and health, and psychiatry was reviled for its unreliability?