The expert who led the move to delete homosexuality from the DSM might come to believe that homosexuality is a disease, and then once again decide that it is not. With each change of opinion comes the potential for instability and discord; and to Frances, this meant that the DSM-III’s achievement was a fragile one. “The fact that we had a descriptive system only revealed4 our limitations,” he said. “If you believe that labels are only labels, you don’t want to keep changing the language arbitrarily. It just confuses everybody.” If the DSM is not the map of an actual world against whose contours any changes can be validated, then opening up old arguments, or inviting new ones, might only sow dissension and reap chaos—and annoy Frances in the bargain. If he was going to revise the DSM, Frances told Pincus, then his goal would be stabilizing the system rather than trying to perfect it—or, as he put it to me, “loving the pet, even if it is a mutt5.”
Frances thought there was a way to protect the system from both instability and pontificating: meta-analysis, a statistical method that, thanks to advances in computer technology and statistical modeling, had recently allowed statisticians to compile results from large numbers of studies by combining disparate data into common terms. The result was a statistical synthesis by which many different research projects could be treated as one large study. “We needed something that would leave it up to the tables rather than the people,” he told me, and meta-analysis was perfect for the job. “The idea was you would have to present evidence in tabular form that would be so convincing it would jump up and grab people by the throats.”
“We put a lot of faith in meta-analysis,” Frances told me.
Not that he expected to use meta-analysis to sort out the arguments, at least not very often. “You need lots of data from lots of sources for a meta-analysis,” he said. “And I knew that the literature didn’t have the data. I knew we couldn’t do a real meta-analysis of most of what would come up.” If someone brought up one of those off-the-cuff ideas in a meeting, or collared him with a pet proposal at dinner, Frances would just tell him to bring him the data, which he was pretty sure didn’t exist. Meta-analysis would protect the DSM-IV (not to mention Frances) from the pontificators, the profession from confusion, the common language from its own tenuousness. With statistics guarding the gate, the revision would be modest. It might also be boring, but, Frances says, “dull is better than arbitrary.” Seven years after he met with Pincus, when the DSM-IV was released, it was nearly four hundred pages longer than the DSM-III-R, but most of the expansion was in the explanatory sections. Only a few new diagnoses had crossed Frances’s threshold, and the book remained fundamentally the same kind of manual. Just as he had promised, Frances had deferred to the tradition originated by Spitzer.
• • •
Not every psychiatrist loved the mutt. Among its more prominent detractors was Steven Hyman, who in 1996 became the head of the National Institute of Mental Health. A neurogeneticist by training, Hyman hadn’t thought much about nosology before taking over at NIMH. It “seemed a bit like stamp collecting6,” he once wrote, “an absorbing activity perhaps, but not a vibrant area of inquiry.” But then he realized that the DSM was “a critical platform for research.” Its categories and criteria were the basis of decisions made by journal editors, grant reviewers, regulators, and the Food and Drug Administration, which meant that scientists were bound to frame their proposals in the DSM’s language. “DSM-IV diagnoses controlled the research questions they could ask, and perhaps, even imagine.”
“The tendency [is] always strong7,” John Stuart Mill wrote in 1869, “to believe that whatever receives a name must be an entity or being, having an independent existence of its own.” To Hyman, who quoted Mill approvingly, this tendency had led all the stakeholders in nosology—scientists, regulators, editors, doctors, drug companies, and, of course, patients—to take the labels as more than labels, as the names of actual diseases. They had, at least according to Hyman, reified what were intended only as concepts. And this was no mere abstract concern.
It became a source of real worry8 to me, that as Institute director, I might be signing off on the expenditure of large sums of taxpayers’ money for . . . projects that almost never questioned the existing diagnostic categories despite their lack of validation.
The DSM, Hyman concluded, had “created an unintended epistemic prison,” and anyone with a stake in the mental health treatment system was trapped inside.
While he was at NIMH, Hyman had occasion to confide his reservations to at least one colleague: Steven Mirin, then medical director of the APA. Both men had been affiliated with Harvard and lived in the Boston area, but they’d become friends only after they had both arrived in Washington and their kids started attending the same schools. On a weekend afternoon in the summer of 1998, they were eating lunch by the side of Mirin’s suburban swimming pool when Mirin asked Hyman if NIMH would give the APA money to get the next revision of the DSM up and running.
Mirin’s request for taxpayer money to kick-start a project from which a private organization would reap huge profits was not as untoward as it might seem. After all, the DSM is indispensable to public health, and NIMH had helped fund the DSM-IV. Nonetheless, and despite their friendship, Hyman said no. He told Mirin that a revision was premature, not only because the ink was barely dry on the DSM-IV, but more important, because psychiatrists had yet to come up with a better way to carve up the landscape of mental illness. All they could do, Hyman thought, was continue to create and refine concepts that would then be mistaken for real disease entities, and further trap psychiatry in its epistemic prison. Until someone figured out how to fashion a key, Hyman didn’t think there was much point to another revision, and he wasn’t going to provide any public money for one. After all, you don’t remodel a house when the foundation is infested with termites.
Mirin didn’t fight back—mostly, he says, because he didn’t disagree. “The DSM was a system based on descriptive criteria influenced by experts in the field,” Mirin told me. “They had lots of opinions, but these couldn’t necessarily be validated.” The uncertainty out of which the diagnoses were fashioned could not help but show up in the clinic.
“It’s one thing to guess and another to biopsy a tumor or to measure an enzyme,” Mirin said. And both he and Hyman knew which method the DSM had saddled them with. Spitzer may have freed them from Freudian metaphysics, but still, as Mirin put it, “we were stuck with making diagnoses based on scripture.”
Even so, America’s leading psychiatrists weren’t about to renounce the only scriptures they had—mostly because, as much as they knew the DSM was flawed, they didn’t have anything with which to replace it. “I realized that it got me nowhere9 to criticize the DSM because that did not offer a constructive alternative,” Hyman told me. “In fact, given the way the DSM had controlled the imagination of scientists, there was little information with which to see beyond it.”
Hyman may have been anguishing about psychiatry’s predicament, but Mirin wasn’t losing any sleep over the fact that his profession was stuck guessing about categories that didn’t really exist. “I don’t recall feeling particularly tortured about it. The DSM was essential to being paid for treatment. Without its methodology, payors would see mental illnesses as figments of a provider’s imagination.” It was also essential to the APA’s finances. After all, Mirin told me, “coming down the mountain with the Ten Commandments sure sells a lot of books.”
• • •
Of all his accomplishments during his tenure in Washington, Steve Mirin seems proudest of the time he persuaded The Washington Post to support legislation requiring insurers to pay for mental health care at the same level as other medical services. So far, parity, as this mandate was called, had only been implemented in a few states, and often only for mental disorders considered by insurers to be biological in origin. In 2002, there was a bill pending in Congress that would make it binding everywhere and for th
e entire range of DSM-IV diagnoses. President George W. Bush had endorsed it, but the bill seemed likely to sink into the mud of the legislative process, in part, Mirin thought, because the Post10—“the hometown paper of every member of Congress,” as he put it—had twice come out against parity. So he arranged to meet on September 3 with an editorial page editor to see if he could sway the paper’s opinion.
Mirin arrived expecting an hour with a single editor, so he was surprised and pleased when six editors and a reporter filed into the conference room and talked with him for nearly ninety minutes. He may not have been losing sleep over it, but the editors did their best to torment him with the discrepancy between the DSM’s authority and the actual science behind it. They “asked questions11 such as ‘How do you diagnose mental illness?’ and ‘How do you tell if it’s real?’ and ‘Do you have a science base like the rest of medicine does?’” Mirin told the Psychiatric News.
Mirin was prepared for this inquisition. His press office had briefed him about the ways of reporters, and his staff had subjected him to a mock grilling. Nor did he have to face it alone. He’d brought with him an expert on diagnostic questions: Darrel Regier, whom he had recently hired to head up the APA’s research arm, the American Psychiatric Institute for Research and Education. Mirin had recruited Regier from the National Institute of Mental Health, where he had risen to the rank of vice admiral in the Public Health Service. Regier was attractive to Mirin in part because of his familiarity with the ways of government bureaucracies, but at least as important was the fact that Regier, an epidemiologist as well as a psychiatrist, had been measuring the levels of mental illness in the population since the earliest days of DSM-III.
What Regier had seen didn’t inspire confidence. As the head of the NIMH’s Epidemiological Catchment Area (ECA) team, he had overseen a group of researchers who, starting in 1980, fanned out across five U.S. cities armed with a questionnaire keyed to the diagnostic criteria in DSM-III. They’d asked twenty thousand people12, selected to reflect the general population, about their worries and their sadness, about whether they heard voices, about how they slept and ate. They tabulated the results and, in 1984, began to release them in a series of journal articles.
The ECA’s findings13 were stunning. In any given year, more than 20 percent of Americans qualified for a DSM-III diagnosis. Nearly one-third of us—eighty million people, according to the 1990 census—would have a mental illness in our lifetimes. And the sick among us were really sick14. Sixty percent of those diagnosed with a mental illness had a comorbid disorder, meaning they qualified for at least two diagnoses. Ninety-one percent of people with schizophrenia had at least one other diagnosis, as did 75 percent of people with a depressive disorder. Fifteen percent had three or more diseases. More than half of the people with a drug-related diagnosis, such as Cannabis Abuse, also had a second (or third) diagnosis. Even more alarming, only 19 percent15 of the afflicted had sought help for their troubles, a number that dropped to 13 percent in the cases where only one diagnosis was warranted. It seemed that America had an enormous but unacknowledged and untreated public health problem whose effects on productivity, on family life, and on the body politic were unfathomable.
This potential fivefold increase in the size of the market for psychiatry wasn’t so much an embarrassment of riches as a plain embarrassment. Even accounting for the fact that epidemiological studies, in which researchers go out looking for trouble, almost always yield bigger numbers than studies that rely on numbers gleaned from doctors’ offices and hospitals, the results beggared imagination. They also cast doubt on the DSM. The questions at least had to be asked: Was the problem in the minds of the people or in the methods of the doctors? Did the DSM-III make it too easy to turn people’s everyday troubles into disease? Was the book that saved the profession going to lead it to another downfall?
Two decades later, Regier thinks the answers are all too clear. I interviewed him in 2010, in his spacious office on a high floor of APA headquarters in Arlington, Virginia. At sixty-seven, he has a smooth, unlined face. His tie is tightly knotted, his shirt as crisp and neat as his office. He gives off a quiet confidence, the certainty of a man who has crunched the numbers and seen the results, and concluded that “we just don’t have good thresholds for identifying what we would consider mental disorders.” Having eliminated any account of the origin or nature of mental illness in favor of pure observation, the DSM-III had also eliminated the thresholds, vague as they might be, provided by Freud’s insistence that mental illness was distinguished by its origins in intrapsychic conflict. The resulting symptom-based diagnosis is binary; if you have five of the nine symptoms of depression, you have the same disorder as a person with all nine, just as if you have a small stage 1 tumor in your lung, you have the same disease as someone with the same kind of tumor who is about to die. With those five symptoms, as with the first appearance of the tumor, you have crossed the line from health to illness, and the rest is only a question of severity.
But, as those prevalence numbers made clear, doctors using DSM checklists were all too likely to find disease everywhere. There was no governor, no way to say this person was sick and that one was simply unhappy, nothing like the CT scan that confirms that the patient with the persistent cough and fatigue has a tumor in his lung. A doctor who diagnosed strep entirely on the basis of symptoms was practicing bad medicine, while a doctor who diagnosed depression only on the basis of symptoms was practicing standard psychiatry. It seemed that in his attempt to make psychiatry look more like the rest of medicine, Spitzer had actually fashioned a book that only highlighted the differences.
The comorbidity rates—the frequency with which people qualified for more than one diagnosis—were another embarrassment. Here again, Regier said, the ECA studies pointed not so much to a sick population as to a flawed manual. Spitzer had anticipated the possibility of multiple diagnoses, and in the introduction to DSM-III he suggested that there was a hierarchy of mental illness, that some disorders only had a narrow range of symptoms while others contained multitudes. Schizophrenia, for instance, was far more encompassing than major depression, so clinicians confronted with a patient presenting symptoms of both were advised to render only a schizophrenia diagnosis on the assumption that the low mood was part of the more comprehensive disorder. Regier pointed out that this amounts to a claim that the depression itself is “just noise,” of no inherent interest or value in understanding the patient or their disorders. But the ECA team found that people with symptoms of both schizophrenia and depression were different from people with only schizophrenia in many ways. Ignoring their depression meant failing to get a complete diagnostic picture and losing “an enormous amount of data” about mental health. “The ECA blew the hierarchy out of the water,” Regier said proudly. “It just didn’t make any sense when we started looking at the data.”
Concerns like this led the APA to abandon the hierarchy in the DSM-III-R, but the real problem, Regier told me, was not the approach but something much more basic: the idea that DSM disorders are discrete diseases that exist in nature in the same way as cancer and diabetes. This, to Regier, is the fundamental flaw of the DSM, the one that accounts for the high rates of both prevalence and comorbidity. “It makes it seem like an anxiety disorder doesn’t have any mood symptoms and a mood disorder doesn’t have any anxiety symptoms. But it isn’t that simple. It’s just not the way people present.”
But it is the way the DSM presents mental illness; indeed, that neat separation is the signal innovation of the DSM-III. Fortunately for Mirin and Regier, by the time of their fateful meeting with the Post editors, they’d turned their skepticism into a strategy. “We walked them through how we understood mental illness, and what our thoughts were about diagnosis and the DSM,” Mirin recalled. Not, of course, their thoughts about the book’s failure to correspond to clinical reality or about the way the categorical approach trapped diagnosticians in a tautological loop (which, after a
ll, were highly technical matters, known and understood only by experts), but rather their thoughts about the troubles reported in the daily paper that might make the average editor skeptical: the shifting sands of psychiatric diagnosis, the prevalence rates, the frequent and repeated revisions of the nosology, the disorders that came and went with dismaying regularity. These they readily acknowledged, but then they turned them to advantage. The problem wasn’t that psychiatry was inexact when compared with the rest of medicine, but rather that the rest of medicine was nowhere near as certain as it was cracked up to be. The glucose levels that constitute diabetes, the cholesterol counts that call for treatment, the blood pressure that qualifies as hypertension—these numbers had all changed over time, and after no small amount of wrangling. To hold psychiatry to a more stringent standard was unfair and would make victims of doctor and patient alike.
This approach was exactly the right one for his audience. “They were smart people,” Mirin said. “They were sophisticated enough to understand that what their doctor told them about hypertension was not carved in stone, either.” If the Post’s editors noticed the intellectual sleight-of-hand at work here, the way that these leading psychiatrists were distancing themselves from the same claims to certainty that had allowed the DSM to rescue psychiatry from the pseudoscience precipice (or, for that matter, if they wondered whether or not they should keep taking their diuretics), they didn’t say, at least not in print. Perhaps they were afraid they’d seem unsophisticated or just plain dumb. Either way, six days after the meeting, the paper came out in favor of parity16, Congress passed a limited version of the bill, and mental health professionals everywhere rejoiced. Six years and many editorials later, parity became the law of the land. Mirin and Regier’s strategy succeeded. They had spun the dross of diagnostic uncertainty into gold.
The Book of Woe: The DSM and the Unmaking of Psychiatry Page 6