The Book of Woe: The DSM and the Unmaking of Psychiatry (35 page)

So it’s no wonder the APA was on its heels and in disarray. Or at least that’s my explanation for their surprisingly ineffectual response. When they weren’t launching ad hominem attacks or whining that they were the misunderstood victims of their own good intentions, or repeating their long-stale talking points to reporters and in mostly ignored press releases, they were silent. They didn’t bother responding, by letter or column, to the onslaught in
The New York
Times
. They didn’t answer Kleinman or
The Lancet
or hold a news conference of their own to counter the British renegades’ arguments. They didn’t expound on the philosophical and scientific conundrums posed by psychiatric diagnosis. They didn’t argue that diagnostic uncertainty was the rule rather than the exception in medicine. They didn’t warn people not to take the DSM too seriously. They didn’t even make the obvious point that the two articles in the
Times
—one of which thrashed the APA for diagnosing too few people, the other for diagnosing too many—were at least an indication that it wasn’t trying to fix the game either way. Perhaps the APA’s leaders were shell-shocked, or tired, or simply lacked the intellectual horsepower to respond. Maybe they really believed, as David Kupfer told
MedPage Today
, that even though the deadline was rapidly approaching, “
the door is still very much open
¹⁶
” to changes. Or maybe they had figured out that when the DSM-5 came out in May 2013, none of these complaints, no matter how trenchant or eloquent, not Frances’s or Wakefield’s or First’s, not
The New York
Times
’ or
The Lancet
’s—not one of them would matter. Maybe they decided that since they had the ball—indeed, they owned the ball—they could just duck their heads and run out the clock.

•   •   •

There was one other DSM-related op-ed in
The New York
Times
in late January. I wrote it. “
You’ve got to feel sorry
¹⁷
for the American Psychiatric Association,” it began, “at least for a moment.” I wasn’t being entirely ironic. I did feel a little sorry for the APA. Not that the organization deserved my sympathy or needed my help, but there was something nearly pathetic about its inability to mount a spirited defense of its own work, about the fear that prevented it from telling us what all its members knew: that the disorders listed in the DSM were not real diseases, but, as my essay put it, “useful constructs that capture the ways people commonly suffer,” that this is why the arguments were fraught and endless, and that it was foolish to think this task force would come up with anything better than previous task forces: provisional categories that would inevitably change with time. The APA couldn’t, or wouldn’t, say this—perhaps because it would turn into fodder for its enemies—so I said it for them. It seemed like the least I could do.

Plus I got to quote Herb Peyser: “We’re like Cinderella’s older stepsisters. We’re trying to stick our fat feet into the delicate slipper so the prince can take us to the ball. But we ain’t going to the ball right now.” I thought this image captured the problem perfectly. I still do.

I did not receive a thank-you note from the APA’s Office of Communications. That might be because I ended the essay by saying that even if it wasn’t going to the ball anytime soon, once the DSM-5 came out, the APA would be laughing all the way to the bank. But I did get an e-mail from Frances, sent at six a.m. the day the article ran. In its entirety, it read:

From: Allen Frances

To: Gary Greenberg

Subject: As the scorpion told the frog

What do you expect, I am a scorpion.

Sent from my Verizon Wireless BlackBerry

I asked him to elaborate and got this back:

When you had an incredible platform to help contain DSM 5 damage, you couldn’t contain your antipsychiatry quixotic instincts and instead had bigger fish to fry. This is unfortunate for a Panza like me (with much smaller ambitions like protecting kids from antipsychotics) because your broadside against psychiatry allows the DSM 5 crowd to simply shrug you off . . . So in tilting against windmills, you made yourself irrelevant to DSM 5.

I’m not sure where Frances got the idea that I wanted to be heard by the DSM-5 crowd. It was clear, however, why he saw my article as antipsychiatry: because I had said out loud, while standing on that “incredible platform,” that his profession’s authority rested on nothing more than agreement among experts. Not that he denied this, but he was sure it should not be said so publicly, and it was making him wonder if he’d made a mistake by being so candid with me.

“I often ask myself why I am so good to you when I know you will stab psychiatry in the back,” he had written earlier. He answered his own question. “It is the Prince Myshkin in me.” But, as was often the case when Frances called himself an idiot, it seemed his real barb was directed elsewhere.

Frances’s winter of discontent was lasting into spring. “The man is an absolute fool and an incorrigible tool,” he wrote of one DSM-5 activist. The psychologists’ petition was “dying as the feckless humanists fiddle.” Paula Caplan had started her own petition, calling for a boycott of the DSM and for congressional hearings into the harmful effects of psychiatric diagnosis. Infighting among the groups opposing the APA was growing. “This is getting really disgusting,” he wrote.

There were a couple of bright spots. Late in February, the Department of Health and Human Services confirmed that the ICD-10 would not be implemented until October 2014, meaning that the APA no longer needed to hurry the DSM to publication in 2013. In early March, a psychologist’s blog post about the bereavement exclusion attracted 65,000 hits in four days—“a spontaneous revolt by the large community of the bereaved,” Frances wrote in the
Psychiatric Times
—and his latest hope for a tipping point. And the APA handed him a rhetorical opportunity when it hired James Tyll, a former Pentagon flack, to handle its DSM communications, and he promptly told a
Time
reporter that Frances was a “‘dangerous’ man trying to undermine an earnest academic endeavor.”

“Fresh from DoD,” Frances riposted in
The Huffington Post
, “it may be difficult for the new spokesman to leave behind combat clichés. Who knows? I may have become a picture card in his deck of high-value targets.”

But overall Frances’s tone was darkening. “How can you possibly continue to fiddle?” he asked his former friends on the back channel. In an open letter he urged the board of trustees to keep the bereavement exclusion, get rid of Disruptive Mood Dysregulation Disorder and Attenuated Psychosis Symptoms Syndrome, and abandon Hebephilia “before more harm is done.” Take these steps, he wrote, and they would prevent a further loss of “public and professional faith,” reduce the likelihood of overdiagnosis and overmedication, and “allow me to throw my cursed BlackBerry into the ocean.” And in case that wasn’t enough to spur them to action, he added that “as the responsible leaders of the APA, you cannot avoid your fiduciary responsibility to regain control of the staff and to rein in a runaway DSM-5 process.” Otherwise, he wrote, they risked “dramatically reduced DSM-5 sales, APA budget shortfalls, declining membership, and the potential loss of the DSM franchise.”

After all his appeals to common sense and professional wisdom, to aristocratic humility and the spirit of moderation, Frances was apparently reduced to hoping that it was true what they say about capitalism: that money talks.

•   •   •

“
Wonderful news
¹⁸
,” Frances blogged in late April. He had caught wind of some changes—that Attenuated Psychosis Symptoms Syndrome and Mixed Anxiety-Depression would be placed in the Appendix of the DSM-5, as would Internet Use Disorder, and that Hebephilia was not going to get its own diagnostic category (although it would probably be listed as a subtype of Pedophilia). Regier and Kupfer attributed these changes to data from the field trials, but to Frances, this meant that they had finally, and wisely, concluded that there was indeed such a thing as bad publicity.

“For the first time in its history,” he wrote, “DSM-5 has shown some . . . capacity to correct itself.” There were still many outstanding concerns (and just in case the APA had lost track, he listed twelve of them), but it seemed that “extensive criticism from experts . . . public outrage . . . negative press coverage,” as well as the data, had paid off. Frances wasted no time in using this as a rallying point for his troops, urging them to exploit “this opening chink in the previously impervious DSM-5 armor” and “take this last opportunity to be heard.”

More bad news was soon filtering out from the field trials, though, including a rumor that Major Depressive Disorder and Generalized Anxiety Disorder, longtime staples in the psychiatric pantry, had achieved extremely low reliability scores, an indication that those little tweaks, coupled with the poor design of the study, had made a huge difference, and this strengthened Frances’s fears that the reliability numbers would be a “
stain on psychiatry
¹⁹
.”

“Looks like I wasted my time,” he wrote me. “Cassandra, not Cincinnatus.”

Though it had relented on some of the diagnoses, the APA was showing no signs of changing its tactics. Indeed, it reprised one of its earliest moves. In mid-April, just a couple of weeks before the APA’s annual meeting, members of the task force and work groups received a communiqué from Kupfer and Regier, reminding them that the confidentiality agreement to which Spitzer had objected (but which they had signed) had new implications now that studies were appearing in the academic press using the proposals they had generated.

“
We encourage the wide dissemination
²⁰
of these important studies,” the memo read, but lest anyone get it in their heads to go Volkmar on the APA, Kupfer and Regier wanted to “remind you that the content and work products that have been generated as part of your ongoing activities . . . is [
sic
] considered to be the property of the APA.” This meant that “permission is required for its use,” which in turn required that any outside publisher obtain a license from the APA to use its intellectual property. As for people who might have unwittingly violated the copyright agreement already, “please let us know immediately so that we can work out any copyright issues before publication.”

So it wasn’t just outsiders such as Suzy Chapman who needed to fear the copyright police. Nor was it only publication that might attract their notice. “We ask that you refrain from submitting any manuscripts . . . without first consulting the APA’s American Psychiatric Publishing,” Kupfer and Regier wrote. Simply circulating a paper was a no-no. “It is imperative that our publishing arm and attorney be made aware of any such instances,” and also of any papers already under consideration. Indeed, it seemed, any attempt to use the material published on the DSM-5 website in any venue not approved by the APA would be considered a violation of a copyright that the lawyers were gearing up to enforce vigorously.

The APA had evidently figured out that money doesn’t just talk. It can also prevent talking.

“
What possible copyright excuse
²¹
can there be?” Frances asked, when I told him about the memo.

“
It is just too nutty
²²
,” he wrote a week later. The memo, the “crazy low reliabilities,” the fact that essential questions had not begun to be addressed, the way Kupfer and Regier were living inside an echo chamber and doing all they could to seal off the DSM from the outside world, the flagrant violation of the most basic academic and scientific freedoms—suddenly this wasn’t just Keystone Kops antics anymore.

“I used to compare them to the Kremlin,” he wrote. “But they are really North Korea and that is a whole lot more dangerous. Expect chaos.”

A
little bit of chaos did break out at the APA’s 2011 annual meeting in Philadelphia, in the form of a couple hundred Occupy the APA: Boycott Normal protesters, waving signs (
DSM—MEDICALIZING THE SYMPTOMS OF LIFE
) and chanting chants (“Hey, hey, APA! How many kids did you kill today?”). Kim Jong-un would probably have approved of the notices urging attendees to check the credentials of strangers approaching them with questions (because people “presenting themselves as journalists are not always who they say they are”) and to refer the unbadged to the Office of Communications and Public Affairs; the Supreme Leader might even have given an extra food ration to the security guard who broke up a family photo session in the main lobby, citing an APA edict banning unauthorized picture taking.

But the Occupiers were corralled at one entrance to the sprawling convention center, and at least one unsanctioned (and officially persona non grata) journalist—that would be me—roamed the halls unmolested, asking questions of whomever he liked, and if the scene was a little more tense than in Honolulu, brotherly love reigned supreme over chaos and fascism most of the time. John Livesley’s highly public resignation from the personality disorders work group, announced just the week before, didn’t stop him from participating collegially in forums with the remaining members, and Andrew Skodol met the continuing, now nearly universal outcry against the personality disorders proposals with charm and equanimity. Michael First learned that despite his criticisms, the APA was probably going to renew his franchise on two DSM-related products—the Structured Clinical Interview for DSM Disorders and a handbook of differential diagnosis—and would (“after I sign my life away”) provide him with advance copies so he could get to work. Darrel Regier and David Kupfer were all smiles and handshakes as they greeted colleagues before their first presentation about the DSM, held on the first morning of the meeting.

The session was just a warm-up, an opportunity for Kupfer and Regier to reiterate the shortcomings of the DSM-IV, to talk about paradigm shifts without quite saying whether or not the new book would constitute one, to once again list all the effort, time, and money that had gone into the revision. As he had in Hawaii, Lawson Wulsin, the APA’s liaison to other medical specialties, gave his advice on psychiatry’s ongoing struggle for respectability and money. “Mental illness has been promoted to constituting a respectable public health problem,” he said. This meant that psychiatrists now had a huge opportunity, but only if they could “learn how to work outside their comfort zone, and how to get well paid for it.” The key to this, he continued, was joining other medical specialties in “integrated care settings,” where they could deliver “measurement-based care.” The DSM-5, with its focus on dimensional measures, would be one of the tools psychiatrists could use to “do well and win at that game.”

The afternoon symposium was the main event—the public announcement of the results of the field trials. Before the packed room could hear the numbers, however, Helena Kraemer once again described her methodology—and the problems with the DSM-III and DSM-IV that she had attempted to remedy. Since she’d presented it the previous year in Hawaii, her critique had become a full-on broadside against Spitzer and Frances. Their sample sizes were too small. They had created conditions that were too pristine. They had invited conflicts of interest, letting work groups design the field trials, allowing clinicians to choose subjects most likely to qualify for the diagnosis in question, taking too much of a hand in adapting the kappa statistic to the DSM-III, focusing too much on maintaining prevalence rates in DSM-IV. “There was a bias in those studies,” she said. Spitzer and Frances had feathered their own nests, but no matter how good the results made their DSMs look, they were “badly inflated and that causes a problem now.”

The resulting problem—unreasonable expectations of how reliable psychiatric diagnosis should (or could) be—had a solution. It was the downward adjustment she had first suggested at the previous annual meeting, the one where she announced that a kappa of .2 would be “acceptable.”

“I regret that now,” she said, but not because such a low number was unacceptable. What she actually meant was that a result of .2 “
might
be accepted.” A very low kappa, she allowed, was a “point of worry,” but by no means should it be automatically discarded. In fact, an overall reduction in reliability numbers would signify not that the criteria (or the tests) were faulty, but that the APA’s researchers had succeeded in duplicating the messiness of the real world.

By that standard, the field trials were an unalloyed triumph. It was left to Regier to announce the results of the studies conducted at academic medical centers. He led with schizophrenia, which had achieved a kappa of .81 in DSM-III and .76 in DSM-IV, but in the DSM-5 came in at .46. Alcohol Use Disorder scored a .40, compared with .81 in DSM-III. Agreement on Oppositional-Defiant Disorder was .41, much lower than the .66 found in DSM-III and the .55 in DSM-IV. Some of the new disorders received relatively solid ratings—Hoarding Disorder notched a .59, Binge Eating Disorder a .56, and Disruptive Mood Dysregulation Disorder a .50. But others were dismal, like Mixed Anxiety-Depression, whose kappa of less than .01 was deemed “uninterpretable,” as were kappas for four other disorders, including the once stalwart Obsessive-Compulsive Disorder. Results from the personality disorders trials were also confounding; Toronto’s Centre for Addiction and Mental Health, one of Canada’s leading psychiatric hospitals, managed a .75 reliability in identifying Borderline Personality Disorder, while clinicians at the august Menninger Clinic in Houston scored only a .34 using the same criteria. Some reworked disorders did fare better than did their predecessors—PTSD, at .67, was eight points higher than the DSM-IV trial and beat DSM-III by twelve; ADHD was also a few points better than it had been, although Regier had to acknowledge that “we’re still going back and forth” on whether there would be eighteen or twenty-two criteria; the autism spectrum rang up a solid .69, although that was much lower than the .85 of the DSM-IV trial for autism.

But these high-ish numbers were the exceptions, and if the audience members had managed to recalibrate their expectations, perhaps by reminding themselves that in golf lower is also better, they were not able to suppress a murmur when Regier announced that the kappa for Major Depressive Disorder—whose criteria were, other than the removal of the bereavement exclusion, unchanged—was .32 and that Generalized Anxiety Disorder had scored a paltry .20.

Something had gone terribly wrong. Those two diagnoses were the Dodge Dart and Ford Falcon of the DSM, simple and reliable and ubiquitous, and if clinicians were unable to agree on who warranted them, there were only a few possible conclusions: that the DSM-III and DSM-IV had been unreliable from the beginning, that the DSM-5 was unreliable, or that the field trials were so deeply flawed that it would be impossible to say with any kind of certainty just how reliable the new book would be.

Darrel Regier is not a demonstrative man. But even so, he seemed strangely cool, as if he had pumped himself full of Valium before announcing results that were not merely bad but disastrous. Hadn’t he promised all along that the field trials would bear out the revisions and staked his (and the APA’s) reputation, as well as the fate of the DSM-5, on the results? And didn’t the lower kappas and the discrepancies among sites signal a return to the dark days before DSM-III, when diagnoses depended more on where they were rendered and by whom than on what was wrong with the patient? Here he was, announcing a miserable failure, but if he grasped the extent of the debacle, nothing about his delivery showed it.

That might be because he had an explanation, one that seemed to satisfy him. “It’s important to go back and look at where we were and where we’ve come,” he told us. “We’re in a different era of statistical sophistication now.” Unlike Spitzer and Frances, “we gave [clinicians] a set of options and they had to choose,” he explained. In that unsophisticated era, clinicians “didn’t have other diagnoses to confuse them,” which is why they got such high kappas. But the DSM-5’s “state-of-the-art design” had ensured that they would be confused, and the dismal numbers were the proof of the DSM-5’s validity.

The problem, in other words, was not in the numbers but in ourselves. We’d swallowed what Spitzer and Frances had dished out; their comfort food had fattened our expectations, and if the new numbers challenged our unschooled palates and proved a little hard to digest, they at least represented the way psychiatric diagnosis works in the real world. We were just too unsophisticated to understand that failure is success.

•   •   •

One failure couldn’t be gussied up, no matter how hard Eve Moscicki, head researcher for the APA’s Practice Research Network, tried. And try she did, as she presented the results of the Routine Clinical Practice trial, the one in which I had participated. She tried the Kraemer gambit, lowering the bar at the outset by explaining that “this is a first-time presentation” that would offer only “a flavor of the results.” She tried Regierian obfuscation, telling us only how many patients had been enrolled, but not how many of the five thousand clinicians who signed up had actually completed the study. (“I don’t have the exact numbers off the top of my head,” she said during the Q&A, but she finally had to acknowledge that only 640 had submitted data on at least one patient.) She tried distraction, blaming the failure on bureaucratic delays and the unexpectedly long software training rather than on the study’s design, its imposition of a near-impossible burden of conducting hours-long interviews using unfamiliar instruments whose clinical value was questionable and whose reimbursement value was zero. She tried the corporate mission-statement approach—reframing the “unique challenges” faced by the APA as “opportunities for innovative resolutions.” She even went Hollywood, calling her talk “Trials, Tribulations, and Triumphs,” as if it were an elevator pitch for a movie about a plucky heroine overcoming adversity.

If all her bobbing and weaving hadn’t tipped us off to the extent of the fiasco, it became obvious about fifteen minutes into her talk when, after one last reminder that her study was about the feasibility and usefulness of the revisions and not their reliability, she finally flashed some data on the screen—a bar graph depicting how easy (or hard) clinicians found the new criteria to use.

“For ADHD, the majority of clinicians thought it was very easy or extremely easy,” she said. The same was true, she went on, for autistic disorders, anxiety, and depression. This might have been a bright moment in an otherwise bleak afternoon but for one thing: according to the graph, while the narrowest majority (52 percent) had indeed given a thumbs-up to ADHD and anxiety disorders, the number who thought the autism and depression criteria and measures were very easy or extremely easy to use was below 50 percent. Moscicki didn’t seem to notice this discrepancy between the story she was telling us and the data she was showing us. Perhaps she thought that since she was presenting only a flavor, she was free to add sweeteners to taste, or maybe she just didn’t care what we thought, or figured that no one would point out the discrepancies, no matter how obvious, for the same reason that people are reluctant to mention that a coworker smells bad or has left his fly unzipped: because you really don’t want to embarrass him.

And up to a point, she was right.

Moscicki switched from “ease of use” to “usefulness.” She put up the slide about ADHD and autism diagnoses.

“It looks to me like . . . I want . . .” She trailed off and peered at the slide, which showed even more anemic results than the earlier one. It was as if she had never seen it before, although she may only have been calculating the odds of getting away with this forever. “It looks to me like almost a majority for ADHD thought the criteria were pretty useful, and for autism, clearly the majority thought the criteria . . .”

A man’s voice rang out in the darkened room. “It’s not a majority,” he said. “Look, thirty-seven plus seven”—the “very” and “extremely useful” numbers—“doesn’t equal fifty.”

The interrupter, who turned out to be a blogger for
Scientific American
, didn’t bother asking exactly what “pretty useful” was supposed to mean. He didn’t ask Moscicki if she thought it was kosher to make up a diagnostic entity called
trauma
, which she acknowledged she had teased out of the anxiety disorders and which looked suspiciously like a category she had cooked up so she could parade its 62 percent favorable rating. He didn’t point out the lunacy of spending all that time (including mine) and money to find out not whether the criteria or the cross-cutting measures were reliable or valid, but rather only whether clinicians liked the DSM-5, as if the APA were looking for Facebook friends. He didn’t raise the question of selection bias, that is, whether or not the same factors that motivated the few volunteers who actually followed through also predisposed them to give the DSM a Like. He didn’t have to do any of this. Nor did he have to deconstruct propaganda or slog through weedy statistics. He just did the simple math and came to the obvious conclusion.

“This is totally appalling,” he said.

“It’s okay, it’s okay,” Moscicki replied. It was not clear whom she meant to comfort. “This is a first look. If it’s not a majority, it’s a large number of them.”

But her antagonist wasn’t buying it.

“This is deceptive,” he said, as he slung his backpack over his shoulder, spun on his heel, and stormed out.

Like the kid in the story about the emperor’s clothes, he had managed to say out loud what everyone in the room, or at least those who could add, must have been thinking: that Moscicki had crossed the Frankfurt Line, the one between bullshit and lies.

•   •   •

The conference featured at least one glimmer of good news for nosologists. Regier mentioned it a couple of times in his various talks, but the honor of revealing it went to Charles O’Brien, a University of Pennsylvania psychiatrist and head of the DSM-5 work group for substance-related disorders.