The Book of Woe: The DSM and the Unmaking of Psychiatry (19 page)

Six months later, however, Zisook and Kendler, along with a third collaborator, published another paper on the same topic. Its data and findings were nearly identical to the earlier report’s. But there was something new in the second article. “
Because work toward the DSM-V
¹³
has begun,” they wrote, “it is timely to re-examine the DSM’s bereavement exclusion.”

Reframed as a discussion of what should be done now that the revision was under way, the questions about the bereavement exclusion took on a new urgency and the authors demonstrated a new certainty. First, they pointed out, research had shown that the earlier depression is treated the better, and that antidepressant medication is particularly effective in the earliest stages of a depressive episode. Which means, they said, that the “
validity of the bereavement exclusion
¹⁴
 . . . is not an academic issue.” Indeed, Zisook told me, we should also worry about what happens to people who don’t get diagnosed.

“I don’t think we’re doing patients a service by avoiding the label if they meet the criteria,” he said. “I think if we say that in addition to their bereavement they are also depressed, we might intervene more aggressively and sooner and save people a lot of pain, discomfort and, who knows, maybe even lives.”

“
Why should bereavement be singled out
¹⁵
as the only stressful life event that excludes the diagnosis of MDE?” they asked. It was a rhetorical question, of course. To Wakefield and Horwitz, psychiatric diagnosis was a potential harm against which we need protection. To Kendler and Zisook, it was a benefit that we should not be denied.

“
Idiotic
¹⁶
,” said Jerry Wakefield, when I asked him what he thought of the proposal to remove the exclusion. “But clever in its own diabolical way—they used my evidence against me!”

Wakefield was not on the mood disorders work group for the DSM-5. Neither was Michael First or Allan Horwitz. Ken Kendler, on the other hand, was, and Sid Zisook was a special consultant to it. Which may or may not explain why the work group decided, even in the acknowledged absence of direct evidence and despite the tentativeness of the conclusions—not to mention the obvious public relations problem—to eliminate the bereavement exclusion. At the very least, the proposal seems to confirm the notion that experts, given the charter to implement their pet theories as diagnostic changes, will tinker, and that their tinkering is likely to be in the direction of more rather than fewer diagnoses.

Experts like Zisook are not unaware of the possibility of overdiagnosis. They’re just less worried about what they call
false positives
than about
false negatives
. Leaving an illness untreated is more dangerous, in their view, than making illness out of everyday life. And Zisook may be on the National Advisory Board of GlaxoSmithKline, for whom he once ran
a study showing that GSK’s Wellbutrin
¹⁷
was effective for grieving people, but that doesn’t necessarily mean he’s shilling for the company by proposing the expansion of the diagnostic net, or even that he will hawk their products to more patients once the exclusion is lifted. “I don’t think everyone with major depression needs meds or formal therapy,” said Zisook. “I think sometimes watchful waiting is appropriate. Sometimes support and education is appropriate. Sometimes decreasing stress is appropriate.” A good clinician knows when to do which. Expertise is what guarantees that a doctor’s power is used beneficently.

Zisook places great stock in expertise—and not just when it comes to treatment. “The DSM criteria don’t allow for judgment on symptoms,” he told me. “I think a really astute clinician will make decisions as to whether a behavior is a symptom of depression or not.” Removing the bereavement exclusion won’t stop a good doctor from withholding a diagnosis from a grieving patient even if she meets the criteria.

Consider, Zisook said, a patient who is recently widowed and not only sad and withdrawn but also guilt-ridden over all he should have done to prevent the loss of his wife. “That guilt would count toward depression,” Zisook acknowledged, but “when I have this patient in front of me, I don’t count that as a symptom of depression.” Expertise can be relied upon to determine whether guilt is a symptom or just guilt, and whether the criteria add up to a disorder. Astute clinicians, like the crackerjack doctors who staff Zisook’s elite university medical center, don’t need bereavement exclusions to limit their diagnostic powers. They don’t need to slave away at checklists like common clerks.

But Zisook evidently does not want to extend this same latitude to the rank-and-file clinicians, the ones who spend their days seeing patients with a range of psychiatric disorders—not to mention the general practitioners who do most of the prescribing of antidepressants—and who aren’t supported by research grants and generous faculty salaries, who don’t have an hour or so to spend talking with their patients or administering carefully calibrated diagnostic tests that can be scored by assistants or worrying over the fine points of what it means to say that the miserable person in front of them actually has a mental disorder. Run-of-the-mill doctors, it seems, can’t be trusted with a bereavement exclusion, any more than the layman can be trusted with all that
Wizard of Oz
stuff. They must remain loyal to the fundamental tenet of the DSM: that, as Zisook put it, the “criteria are the same regardless of context. If someone meets them, I should give them the label of major depression because that’s what they have”—although evidently only so long as the “I” in question is not Zisook or any other clinician too astute to take the DSM too seriously.

•   •   •

“
The DSM-IV position is not logically defensible
¹⁸
,” Ken Kendler wrote in a statement the APA posted on the DSM-5 website shortly after Frances’s
Times
op-ed appeared and a public furor broke out.

Kendler wasn’t talking about the incoherence of saying that depression is depression unless an elite clinician determines that it is not. He was talking about the way the exclusion contradicted the basic idea of the DSM—that mental disorders can (and, for now anyway, must) be known by their symptoms alone. “The grief exclusion criterion needs to be [either] eliminated or extended so that no depression that arises in the setting of adversity would be diagnosable.” And, since “the majority of individuals” who get the diagnosis develop it “in the setting of psychosocial adversity,” he added, this curtailing of the diagnosis would “represent a major shift . . . in the nature of our concept of depression.”

It’s not clear where Kendler got the idea that the only alternative to eliminating the exclusion was to make it impossible to diagnose depression in the presence of a stressor. It couldn’t have been from Wakefield, who never said that depression kindled by adversity should go undiagnosed. To the contrary, he was trying to lay the groundwork for a return to a traditional, pre-DSM-III idea of depression: “
that sadness in response to loss
¹⁹
is natural and normal, and that the indication of disorder lies in the sadness being without sufficient cause in given environmental contexts or being disproportional to actual loss.” Depression, according to this abandoned notion, was sick only to the extent that it occurred without regard to a person’s life circumstances.

Wakefield was proposing, in other words, that if you want to know if a person is really sick rather than simply reacting to a loss, you have to look at the relationship between the stressor and the person’s reaction. You have to try to understand what the loss means to the patient. And if it is out of proportion, then you have to figure that you are in the presence of a genuine illness—something gone wrong in the body (in this case, the brain)—rather than normal sorrow. Indeed, Wakefield was only suggesting that the prerogative Zisook reserved for the astute (but would deny to everyone else by removing the exclusion) was actually an obligation for all clinicians: to pay attention not only to diagnostic checklists but also to the patient in front of them.

Right now, if you are not a psychiatrist or any other kind of mental health worker, or maybe even if you are, you are probably thinking, “Duh!” You’re probably wondering how it is possible that something as obvious as this even needs to be said, let alone argued about. But that’s only because you have decided to make your living in some other fashion, one that does not require you to satisfy an insurance company or your colleagues in other specialties or yourself—if you take seriously your involvement in the medical-industrial complex—that you are treating “real illnesses.” You haven’t signed on for a profession whose badly tarnished reputation was once restored by applying the thinnest veneer of scientific rhetoric and polishing it vigorously, and which now has to protect itself from the sullying effects of a proposal like Wakefield’s, even if it means taking the absurd position that there is no essential difference between a depression kindled by the loss of a child or parent and a depression brought on by the cancellation of a favorite television show or the death of a pet hamster—or between any of those and a depression that seems to come on out of nowhere.

Good for you, I say. Because if even a man of integrity like Sid Zisook, who is as affable and humane and charming a guy as you might like to meet, and surely the kind of psychiatrist—empathic, articulate, knowledgeable—whom, if you needed one, you’d want to see, if such a man finds himself, in the space of two minutes, totally contradicting himself, talking out of both sides of his mouth, and unwittingly becoming the best evidence of the incoherence of his own position merely by acknowledging that he pays attention to his patients, when smart and compassionate doctors spill buckets of ink over the question of whether or not they should consider what we are going through before they tell us what we are suffering from and what we should do about it, and when the proposal to do so moves Bob Spitzer to say to me, “If we did that, then the whole system falls apart,” then you know that you are knee-deep in a setting of psychosocial adversity.

And, indeed, all of us in the mental health industry know this, from the APA trustee who shook his head and told me in a mournful voice, “We’re just so stuck,” to Allen Frances to Steve Hyman to lunchbucket therapists like me who hold our noses when we put those codes onto the bill. We may not be sophisticated enough to grasp the nobility of the lie that sustains the DSM or to be trusted as its keepers. We may not be astute enough to distinguish between depression and grief. But we all know that the DSM is at its best a clumsy and imperfect field guide to our foibles and at its worst a compendium of expert opinions masquerading as scientific truths, a book whose credibility surpasses its integrity, whose usefulness is primarily commercial, and whose most ardent defenders are reduced to arguing that it should be taken less seriously even as all of us—clinicians, researchers, and copyright holders alike—cash in on the fact that it is not.

O
n December 17, 2010, instead of the usual Friday grand rounds, the department of psychiatry at Columbia University honored Bob Spitzer on the occasion of his retirement. Colleagues from past and present paid tribute with recollections and praise. A historian put Spitzer’s forty-nine-year career into historical perspective. Allen Frances spoke from the same lectern from which he had railed against DSM-5 eleven months earlier. This time he really did hold back. He scarcely mentioned the revision. He didn’t tease Spitzer. He just talked about his contribution, about how he was one of the most important psychiatrists who had ever lived, placing him in the company of Freud and Kraepelin. He couldn’t resist reminding the audience about the limitations of the descriptive method, but still, he said, it is “
the best we can do
¹
, and Bob has been and will remain our master describer.”

Like many such celebrations, the proceedings were more than a little funereal—a tone deepened by Spitzer’s halting, unsteady ascent to the stage, his quavering voice, his obvious frailty. After warning the audience that his Parkinson’s disease had worsened his tendency to burst into tears, he did exactly that. He didn’t get everything said that he intended to say. He had a little trouble remembering exactly how many children he had. But between gusts of weeping he told stories and recounted arguments in a way that conveyed both the charisma and the toughness that had allowed him to become the man who saved psychiatry.

That night Spitzer joined some of his colleagues and collaborators and their wives for dinner at a downtown restaurant. Harold Pincus, Michael First, Jerry Wakefield, and Allen Frances were there. The DSM was far from the main topic of the loud and lively conversation. When the subject did come up, it was in a dense shorthand, the code that signals deep agreement, words such as “field trials” and “polythetic criteria” and “prevalence rates” that carried a world of meaning impenetrable to outsiders. Theirs was a shared, private language, much as they thought the DSM’s should be.

But when it came to revising that language, they were now the outsiders. Spitzer and Frances had been placed on the enemies’ list. First had been pushed aside. Pincus had never been involved. Wakefield (who, as a nonpsychiatrist, was never as inside as the rest) had had his evidence used against him. They were still shouting at one another, still teasing, enjoying conversation as if it were a contact sport. But their shared love of argument, their common language, and the DSM they had fashioned—the one that, in true Talmudic fashion (and it was hard not to notice that these men were all Jews by birth), they were both proud and skeptical of—was now the language of opposition, of resentment, and, increasingly, of powerlessness and cynicism. The event they’d all come together to commemorate signaled not just the end of a career, but the passing of an era.

There was one word in the discussion with deeper meanings that an outsider might have grasped, if only by the seething anger with which it was uttered: “Darrel.”

Darrel Regier is not a shouter or a teaser (or, as it happens, a Jew). He is a mild-mannered man, a Midwest-educated bean counter whose time in New York had begun and ended with his medical internship at Montefiore Medical Center in the Bronx, who has no apparent use for irony, and whose ability to insulate his sentences from objection with thick layers of bureaucratese was probably more useful in his ascent to the rank of vice admiral in the U.S. Public Health Service than shouting and teasing ever would have been. After all, it’s pretty tough to argue with a sentence like this one, taken from an article he wrote.

Moving forward
²
, I believe the more critical issue for work group members is how to avoid mind-body dualism in which mental disorders are moved in neurological classifications as more precise pathophysiological, neuroimaging, genetic, nutritional, infectious, traumatic or other etiological characteristics are discovered.

Not that Regier lacks the ability to fight. “Darrel knows how to throw an elbow,” one psychiatrist told me. Indeed, just a month or so before the gathering for Spitzer, Regier’s pugilistic skills had been on full display at a conference on psychiatric nosology held in Copenhagen and sponsored by the Danish National Research Foundation’s Center for Subjectivity Research—a gathering originally scheduled for April, but delayed when a volcanic eruption in Iceland closed European airports.

Regier’s talk was in many ways a career retrospective. He told his colleagues that he had entered the profession in the early 1970s, in the bad old days when the Midtown Manhattan Study and other pre-DSM-III efforts were turning up inordinate rates of mental illness in the population, and when “
the clinical judgment of a psychiatrist
³
was the gold standard of psychiatric diagnosis.” The DSM-III had made matters a little better, but not much, he said—the 50 percent lifetime prevalence rates reached in some analyses of his ECA project were still too high and
the National Comorbidity Survey
⁴
, the one that had shown that 27 percent of diagnosable people had more than one DSM-III disorder, were a blot on the nosological record. Diagnosticians may have gotten more scientific, but their methods still yielded results that flew in the face of common sense.

Regier recounted the two epidemiological studies from the 1950s that had yielded much lower (and, Regier thought, realistic) prevalence rates. These projects shared one important characteristic: they relied on doctors to identify the cases in a community. Ask doctors who under their care is sick, it seemed, and you get a much lower number than if you ask randomly selected people about their symptoms. “
We had much greater confidence
⁵
in the clinical assessments of physicians with some longitudinal knowledge of all persons requesting care,” Regier said.

So perhaps that old gold standard, clinical judgment, had been too hastily discarded in the name of reliability. Intimate knowledge of a patient’s history and circumstances, coupled with sound medical knowledge, seemed to provide a check on diagnostic exuberance, identifying within the group that met the criteria those individuals who were truly ill. But how to incorporate that into a reliable nosology? Or to put it another way, how could epidemiologists cut the vagaries of physician judgment out of the loop while still maintaining doctors as the gatekeepers to diagnosis and treatment?

Regier’s solution was to try to establish when a person has crossed the threshold from healthy to sick. In their introductions, Spitzer and Frances had instructed users of the DSM that if the symptoms weren’t clinically significant, there was no diagnosis to make; no matter how many symptoms you had, you weren’t mentally ill unless your suffering was clinically significant. But that term had never really been defined; establishing the threshold had been left up to the astute clinician. To find a definition that could be consistently and reliably applied to individual cases was to answer this question, or so Regier proposed. It would allow doctors to specify when the criteria signified the presence of illness. And since those cases were sure to be only a subset of all the people who met the criteria, the prevalence estimates would come down from the stratosphere.

Regier thought the answer was hiding in plain sight—in data collected, but lying dormant, in the ECA and NCS studies. Researchers in both had asked subjects about how much their symptoms had interfered with their lives, and especially whether or not they had been so bad that they had gone to see a doctor about them. The answers had not been used to determine whether or not the people were mentally disordered, but in the late 1990s,
Regier’s team began to dig them out
⁶
. They fashioned an algorithm, applied it to the data, and presto! Prevalence rates came in at 18 percent—still higher than where Regier thought they should be, but still as much as two-thirds lower than the original findings.

Regier was sure he’d threaded the needle, but others disagreed, sometimes loudly. “
To put it mildly
⁷
,” he told the Copenhagen crowd, “howls of protest arose from Spitzer, and later from Jerome Wakefield and others.” The first skirmish was at a meeting of the American Psychopathological Association in 2002, and two years later, when Regier published the results, a fight broke out in the pages of
Archives of General Psychiatry
.
Wakefield and Spitzer pointed out
⁸
that of the nine questions used to generate Regier’s data, seven were about whether people had sought treatment; only two were about how debilitating the symptoms were. But plenty of sick people never saw a doctor, and plenty of people who saw doctors weren’t sick. Regier had confused
treatment seeking
with
clinical significance
, they said, which meant he had reduced prevalence by gerrymandering the patient population rather than actually specifying who was sick and who simply met the criteria.

“
What is striking about this debate
⁹
,” Regier continued, “is that it became even more personal” when Ronald Kessler, who headed the NCS study, warned in a 2003
Archives
article that it would be a mistake to use Regier’s methods to remove mild disorders from the DSM-5—an agenda Kessler thought he had sniffed out in Regier’s research. Kessler wrote that disorders falling short of the threshold Regier was proposing could and often did lead to more severe disorders. A person who confessed to anxiety or depression symptoms on a survey, but wasn’t distressed enough to go to a doctor today, might well end up in the emergency room next month with a panic attack or after a suicide attempt. Here again, the problem was a kind of gerrymandering. The way to solve high prevalence rates, Kessler concluded, was not “
to define the problem out of existence
¹⁰
” by suggesting that mild illness wasn’t illness.

It is a little hard to discern what exactly was personal about Kessler’s or Wakefield and Spitzer’s papers. They are workaday journal articles, all charts and graphs and eye-glazing details leading to careful conclusions. But there’s no question that the articles got Regier’s goat, at least to judge from his response, which he recalled for the audience in Copenhagen.

In response to this scientific critique
¹¹
, we thought it would be helpful to highlight the central issue in DSM-5 revisions very clearly and chose the James Carville approach by responding with a letter to the editor in
Archives
entitled, “For DSM-5, It’s the ‘Disorder Threshold,’ Stupid!”

Now
that’s
personal.

“Bob did put up quite a fuss at that conference [in 2000],” Jerry Wakefield told me. “But Darrel never forgave him.” And ten years later Regier was still settling old scores, or at least revealing scores he’d been keeping for a long time. “
I wasn’t aware that he had interpreted
¹²
my remarks that way,” Ronald Kessler said when I relayed Regier’s comments to him. “I honestly don’t know what he means about it being personal.” But, he added, it wasn’t entirely surprising. “Darrel reacts very strongly to people who disagree with him.”

And by the time Regier got to Copenhagen, Allen Frances was on the top of that list.

Certainly some of the loudest concerns
¹³
in the blogs and print media are that we will unleash a wave of false epidemics—with the past editor of the DSM-IV claiming credit for creating false epidemics of pediatric bipolar disorder, ADHD, and autism . . . He also proclaims little confidence that the current editors can fix this problem or do better in the next edition.

Regier went on to denounce Frances in a way that seemed more inspired by Joseph Biederman than James Carville.
Just look at the history of “progress
¹⁴
in the calibration and validation of scientific constructs in astronomy, biology, and psychiatry,” he said. “Defenders of the current construct do not yield easily to suggested changes in paradigms.”

These debates were not going to end with a pinch on the cheek and a kiss.

•   •   •

But if Frances was playing the pope to Regier’s Galileo, did that mean that the paradigm shift was back on? It is possible the DSM-5 leaders couldn’t make up their minds, that the APA, like a squirrel in the road, knew enough to know it was in trouble, but not enough to know what to do about it.

There was one way in which a paradigm shift was in the making. It was not the sweeping change to a brain-based nosology for which they so devoutly wished, but it was nonetheless far more than a small technical matter. And it was the subject, beneath the vitriol, of Regier’s talk in Copenhagen.

Regier’s argument with Wakefield and Kessler was, as his Carvillian title pointed out, about the disorder threshold, about how a doctor determines that a person has become a patient. And here was one place that Regier agreed with Frances. Not that he would use barnyard epithets, or epithets of any kind, but he did not think the solution was to fabricate a definition of mental disorder. “
It may be of interest
¹⁵
to this audience,” he said, after reading aloud the DSM-IV definition, “that almost none of the DSM-V Task Force or Work Group Meetings struggled with these definitional issues as they evaluated the research literature to determine the evidentiary basis for revisions.” The committees weren’t wasting time on philosophy. “Our plans for DSM-V are to provide a range of cross-cutting measures that will identify continuous measures of emotional, cognitive, addictive, and other domains,” he said. “Most of our efforts will focus on the individual diagnostic measurements that permit better assessments of the thresholds between normal and pathological states.”

Regier was confirming his intent to forge ahead with the new paradigm. (Don’t feel bad if you missed it. If Galileo could have buried his meaning so deeply, his heresy might have been lost on the bishops.) “
Since the broad definition
¹⁶
[of mental disorder is] almost impossible to test,” he said, “most of our efforts will focus on the individual diagnostic criteria and dimensional measurements that permit better assessment of the thresholds between normal and pathological states.” The DSM-5 was going to abandon the attempt to define mental illness or to derive clinical significance by proxy measures like treatment seeking. Instead, it would work to overcome “one of the clearest limitations of our current diagnostic criteria . . . the lack of quantitative measures.” It would provide the means to “set diagnostic thresholds for disorders.” Indeed, it would
require
clinicians to do so by administering tests that would assess the severity of the disorder, as well as the presence of symptoms—anxiety, sadness, obsessiveness, and so on—that might not fit the diagnosis but were nonetheless relevant to treatment. Numbers, not words, were going to guard the gates to the land of mental illness.