The Book of Woe: The DSM and the Unmaking of Psychiatry (16 page)

But psychiatry is not mathematics. The way we suffer, unlike the way numbers behave, changes with time and circumstance, and experts’ opinions of what ails us change the way we think of ourselves and our travails. Kendler insists that mental illnesses must exist in nature. Rewind the tape of history to the dawn of civilization, he says—about ten thousand years ago, when our biological apparatus would have taken shape but history had yet to make us into who we are—and start again. Record the result, and do this a thousand times. While it is likely that in each iteration you will see psychiatrists arriving at different criteria by which they know our mental illnesses, you will also see the illnesses themselves, just as you are sure to see diabetes and strokes and broken bones.

Of course, just because Kendler says that’s what will happen, it’s not necessarily what would happen. Indeed, the thought experiment falters when you consider that Kendler borrowed the scenario from
paleontologist Stephen Jay Gould
¹⁹
. In the original version, Gould rewound the tape to the beginning of earth’s history to point out that given all the accidents, the asteroid crashes and ice ages and tectonic shifts, it was very unlikely that human life as we know it would emerge in any of those do-overs. His rhetorical point was that it was folly to assume that the long arc of evolution bends toward anything in particular, that only Whiggishness or presentism or some kind of Voltairian optimism—not to mention a huge dose of species-level narcissism—would allow a person to claim that we are the inevitable culmination of creation, let alone that our endeavors lead inherently toward progress.

“
We follow the tape forward
²⁰
until modern science and medicine develop,” Kendler writes, but this is the whole lesson of Gould’s experiment: We cannot know if anything like modern science and medicine will develop. We cannot simply assume that people will come to identify their subjective troubles as mental, much less place them in doctors’ hands. Gould figured that each new spool would be entirely different, not simply an instant replay.

If Kendler has assumed his conclusions here, it is because he has to assume that mental illness exists in the same way as diabetes and strokes, and that the only alternative is to believe “there is no truth out there.” He has to believe these things because he is a psychiatrist, and only a notion of historical inevitability can justify the enormous hubris, the inescapable a priori principle of psychiatry: that our psychological suffering is
medical
—which, as our reel has unspooled, means located in bodily processes gone awry. Go to the tape, Kendler seems to be saying, and you will find that doctors’ failures so far, including the faulty DSM that urgently needed replacing, are just detours on the road to Parnassus and not a disastrous wrong turn.

Psychiatry is not inevitable. It’s not baseball, either. Those wobbly iterations aren’t just bad calls that frustrate a batter and raise a crowd’s ineffectual, if vocal, ire. They are diagnoses that change people’s lives, that render homosexuals unfit for employment, that subject children to untested and powerful drugs, that encourage patients to think of their troubles as chemical imbalances rather than meaningful signs of something gone wrong in their lives. If you go to see a psychiatrist, you probably don’t enter the office as if you were going into Fenway Park. You don’t think you are about to take part in a game whose rules are arbitrary if venerable and negotiable. You don’t expect the number of symptoms that add up to depression to change like the strike zone has or diagnoses to enter the DSM like the designated hitter was added to the rulebook. If you’re anything like me, as much as you might like baseball, you expect more from your doctors than that.

You might also think there is a difference between the current DSM and the current
Official Rules of Major League Baseball
—and not just that one costs $95.89 on Amazon, while the other can be downloaded for free and, in its 2011 edition anyway, has an excellent picture of Curtis Granderson crossing home plate on its cover. You might well believe that one compiles the laws of nature and the other the rules of the game, and if you do, it is in part because we all want to believe that someone somewhere can understand and help us when we suffer. But it is also because psychiatrists—with their scientific-looking DSM, with their assurances about epistemic iteration, with their talk of chemical imbalances and their medications to treat them—have spent the better part of the past four decades telling you, and acting like, it is so.

•   •   •

Darrel Regier’s August 2009 interview with the
Psychiatric News
was part of a concerted effort to counter Frances’s warnings that the DSM-5 was headed for disaster. “
The ‘disastrous result
²¹
’ in most clinicians’ and researchers’ minds would be for DSM to continue on the same path it has been on for 30 years,” he told the
News
. That’s why his task force was proposing “significant revisions,” and why the new manual, he wrote in an
American Journal of Psychiatry
article, would “
attempt to address
²²
the consequences of continuing to use the original . . . hierarchical structure of ‘pure’ diagnostic categories.” Frances and Spitzer’s DSM was simply too bad to be left alone.

Regier may have been making a wholesale critique, but he was quick to say that “a wholesale revision was not in the cards.” What Regier had in mind was nothing as radical as casting the categories to the wind. Instead, he said, diagnostic labels and criteria would be joined by
dimensional measures
. The problem with the categorical approach was that it forced clinicians into binary decisions. Did the patient have OCD or MDD, ADHD or BDNOS? Too often the result was more than one diagnosis—the comorbidity problem—or a diagnosis that didn’t really capture the clinical picture. And then there were the “patients with clinically significant distress and impairment,” whose symptoms spanned many diagnoses without reaching a diagnostic threshold in any one. People could be a little depressed, a little anxious, a little obsessive-compulsive, but still in a lot of distress. Wouldn’t it make sense to be able to identify, measure, and study these
cross-cutting symptoms
as dimensions of pathology without necessarily attributing them to a particular category?

“The single most important precondition for moving forward to improve the clinical and scientific utility of DSM-V will be the incorporation of simple dimensional measures,” Regier wrote. Their “prominent use” would be “one, if not the major, difference between DSM-IV and DSM-V.” The revision would focus on measuring the severity of symptoms, both within and across diagnoses. This alone would not entirely spring psychiatry from its epistemic prison, but, especially once researchers could “
establish better syndrome boundaries
²³
” and “identify continuous measures of the constituent symptoms,” he told me in an e-mail, they would be able to determine the “statistically valid cutpoints between normal and pathological.” Getting to this goal, of course, would require categories based on “a full understanding of the underlying pathophysiology of mental disorders.” But even if this was a long way off, it was important to take the first step now. “Delaying the introduction of dimensional measures in this version of DSM will simply retard both clinical and research progress,” he wrote.

But it wasn’t as if DSM-IV lacked dimensional measures.
Some diagnoses, such as depression
²⁴
, had severity specifiers, in which clinicians rated a patient’s disorder from zero to five and reported this as the last digit of the diagnosis code. And the DSM-IV also provided a
Global Assessment of Functioning
²⁵
scale, which clinicians were supposed to use to indicate a patient’s functioning on a scale of zero to one hundred. But, as we clinicians soon found out, when we rated a patient’s functioning too high or his severity too low, insurance companies used these numbers as their own kind of statistical cutpoint—to cut off benefits. So we quickly adapted—inflating the ratings or ignoring them altogether, not telling unless we were asked.

Regier needed a more comprehensive and scientific approach to dimensional assessment than what the DSM-IV offered, but this presented a problem. Very few severity tests for DSM-IV diagnoses had been developed and validated. Nor did he have a huge literature to draw on for measuring cross-cutting symptoms. The
National Institutes of Health had created PROMIS
²⁶
(Patient Reported Outcomes Measurement Information System) to gather information on how patients thought they were faring, but while this offered a way to determine, say, how anxious a person was or how well he was sleeping, Regier could not say how this kind of data would be integrated into the diagnostic system. To get dimensional measures in place for the DSM-5 required a “
bottoms-up
²⁷
[
sic
] approach for instrument development,” he wrote, but the group that had been assigned to dive into that task started its work only in January 2009. Field trials, in which those tests would presumably be studied, were slated to begin in summer 2009, so they had had just a few months to put together their tests. To critics, this seemed like an indication of disarray. “
If they really want to do dimensional assessment
²⁸
,” Michael First told me, “they should wait the five or ten years it would take for the scales to be ready.”

But Regier did not think it was necessary to have all this nailed down before the book was published. “
We don’t expect the DSM-5
²⁹
to be perfect or etched in stone for the ages,” he told me in an e-mail. This expectation, after all, was the central trouble with the previous DSMs; designed to look scientific, they had proven too easy to reify. And even if the DSM-5 was not going to be anchored in the bedrock of neurobiology, even if it could not fulfill the promise of paradigm change with which it had been born, still it could achieve one thing: the ratcheting back of expectations for the revision, and for psychiatric nosology itself.
Diagnostic criteria “are intended
³⁰
to be scientific hypotheses, rather than inerrant Biblical scripture,” he wrote. And the DSM was not scripture. It was a “living document.”

It was a clever rhetorical move. Regier had turned the reification of the DSM into just another of those “epistemic iterations” that Kendler wrote about, a wobbly step on the way to the truth. The categorical approach had served its purpose, and now it was time to back away from it, and from the misguided fundamentalists who took the diagnoses literally. It was time to pirouette on the back of those new dimensional measures into the “spiral of improvement.”

T
hroughout the summer and fall of 2009, Allen Frances kept up his attack. He became a regular contributor to the
Psychiatric Times
, blogging, sometimes in every issue, about what he thought the APA was doing wrong. By the time he posted a blog titled “
Advice to DSM V
¹
,” the APA was probably not in the mood to take it.

“There is no magic moment when it becomes clear that the world needs a new edition of the DSM,” he reminded his successors. A revision of the ICD scheduled for fall 2012 had reportedly been delayed—and, as he also pointed out, because the codes used by the DSM-5 came from the ICD, a new DSM that preceded a new ICD would soon have outdated codes. Wouldn’t it be better to coordinate the release of the DSM and the ICD, and in the bargain give the revision the time it deserved?

Getting out from under deadline pressure was the key to saving the DSM-5, Frances thought, and this now became his mission. Unintended consequences were the unknown unknowns of the APA’s revision campaign, and haste only increased their likelihood and severity. Even a good diagnostic change could make unexpected trouble. For instance, he wrote, the DSM-IV had fashioned new criteria for ADHD. They were clearer and easier to remember, and
in the field trials the new criteria identified 15 percent more
²
kids with ADHD than the old criteria had—an acceptable result, Frances thought at the time. But once the criteria went into wide use,
the actual increase was 28 percent
³
—an outcome he attributed in part to the ease with which doctors, as well as parents and teachers, could apply the simplified criteria.

Of greatest concern to Frances, however, was the task force’s failure to take “the most important step in the development of any DSM”: to release a complete first draft. Without one, experts outside the work groups could not weigh in on either the proposed revisions or the procedures by which they would be tested, which meant that the field trials might use a faulty methodology to investigate faulty diagnoses comprising poorly written criteria—a compounding of errors that would, he was sure, turn out to be the “fatal flaw” of DSM-5.

This haste, combined with tunnel vision, was particularly distressing, he wrote, because of Kupfer and Regier’s ambition. Their vow to make a “bottoms-up” revision meant that “
everything was on the table
⁴
.” The experts on the work groups would have free rein to make changes without much constraint from their commanders. The task force, he concluded, had put change over stability, innovation over tradition, and threatened to turn the process into a runaway train that would pull psychiatry “
over the cliff
⁵
.” To postpone publication was therefore the “obviously right thing,” as obvious as putting on the brakes to slow a speeding car.

Frances wound up his lesson with a confession of his own failings. “It is surprisingly difficult to write clean, foolproof criteria items. I know this from frustrating personal experience. Despite many years of effort and practice, I never mastered this highly technical writing skill.” (He couldn’t resist adding that “no one working on DSM-V has had any extensive experience in writing diagnostic criteria”—a not-so-veiled reference to the expunging of Michael First.) And the DSM-IV’s text, as opposed to the criteria, the sections within each diagnosis that described such matters as the familial patterns, biological factors, and epidemiology of the disorder, was “tired, old . . . in need of exhaustive revision . . . and fails to convey any of the vividness of actual clinical practice,” and thus “should be up for grabs.” Anyone who said Frances was merely trying to protect his own ego, in other words, had it wrong. He just wanted his successors to change what could be changed and otherwise leave well enough alone.

Frances never misses an opportunity to tell you how dumb or dull or insignificant he and his DSM are. He might mean it. He does seem to subscribe to the conservative notion, made most famous by Edmund Burke, that modesty, born of education and refinement, is the best check on power, at least the kind of power he once wielded. But there is also strategy to his self-effacement. “
I take more blame for DSM-IV
⁶
than we actually deserved,” he told me once. “I purposely emphasized the mistakes that we made. But I saw it as a rhetoric that would help them to feel more comfortable hearing, ‘Look. I screwed up and I don’t want you guys to have the same problems,’ rather than ‘DSM-IV
was such a great document but yours produces crap.’ I’m not criticizing you because I think you are a jerk and I’m smart, but I’m criticizing you because I’ve been through it and this is my mea culpa.”

Not that Frances thinks that DSM-IV
was
a great document. It was only what he wanted it to be—a selective polishing of Spitzer’s work, the best (or the least bad) that could be done with the tools at his disposal, successful because it was dull and unambitious. But Regier and Kupfer, with their everything-on-the-table ambition, were going to produce crap. He may not have thought they were jerks. But when he semisweetened his advice with faint praise—“The DSM-V task force and work group members are dedicated people doing their best under very difficult circumstances”—and then followed it up with condescension—“They should be given sufficient time to ensure that DSM-V will be a worthwhile contribution”—it was pretty clear that this was getting personal and that he was not going to stop being one of those difficult circumstances.

•   •   •

After defending themselves in the leading journal and both industry newsletters—and in mainstream outlets such as
The Wall Street Journal
, to which Kupfer confessed that “
some of us have gotten
⁷
 . . . sick enough about playing defensive ball and being taken out of context”—the DSM leaders went silent. So did APA president Alan Schatzberg, but only after he reassured members that they were the real victims.

“
The development process has been so public
⁸
,” he told the
Psychiatric News
, “that anyone can kvetch about one point or another in a blog.” Schatzberg did welcome “scholars and clinicians” to engage in “collaborative and collegial interchange” with DSM leaders, but suggested that critics should quit their kvetching, or at least take heed of the unintended consequences of their own behavior. “The news media thrive on controversy,” he warned, “and some of these discussions have . . . provided ammunition for those who are anti-psychiatry as a science and opposed to treatment.”

But while the APA was hunkering down in public, in private it was scrambling. In the spring of 2009, before Frances began his onslaught, two members of the childhood disorders work group had resigned. One refused to talk publicly, citing fears that the APA would seek retribution. But the second, Duke University professor Jane Costello, made her resignation letter public—“
I’m too small a fish
⁹
for them to bother with,” she told me—and it was getting widely distributed. As much as she enjoyed “working with this extraordinary group of people,” she wrote,

I cannot in good conscience
¹⁰
continue. I am increasingly uncomfortable with the whole underlying principle of rewriting the entire psychiatric taxonomy at one time. I am not aware of any other branch of medicine that does anything like this. There seems to be no good scientific justification for doing this, and certainly none for doing it in 2012.

The science simply wasn’t available for fulfilling the APA’s ambitions for DSM-5, Costello wrote. Indeed, in a line she could have lifted from Harry Frankfurt, she lamented that the more researchers tried, the more they realized that “the gap between what we need to know in order to make revisions and what we do know has grown wider and wider, while the time to fill these gaps is shrinking rapidly.” And at least one attempt to fill in those gaps—a research project proposed by Costello and a colleague—had, she said, been rebuffed by Kupfer on the grounds that he needed results sooner than they could produce them. Even worse, the APA could have had their results sooner, but they had been unwilling to pay for the research, leaving her no choice but to turn to the NIMH, whose funding wheels turn slowly—too slowly, it seemed, for the impatient DSM revisers.

All of this she perhaps could have tolerated, but then came the “tipping point”: the announcement by Kupfer and Regier that dimensional assessment would be the major difference between DSM-IV and DSM-5.

Setting aside the question of who “decided,” on what grounds, anyone with any experience of instrument development knows that what they proposed . . . is a huge task, and a very expensive one. The possibility of doing a . . . careful and responsible job given the time and resources available is remote, while to do anything less is irresponsible.

Costello was “shocked” at the decision. After all, she pointed out, “a drug company that tried to bring a product to market on the basis of inadequately funded research would rightly be censured.”

Costello’s letter was addressed to the head of her work group, but
the response came from Darrel Regier
¹¹
. He spent two of his six paragraphs reciting the failures of the DSM-IV and a third describing the necessity of dimensional measures to remedy them. Costello probably knew all this, but the DSM-IV’s inadequacies had become part of an origin story that Regier was already using whenever the revision was criticized. It was as if Costello had been defending the DSM-IV and questioning the need for dimensional measures, rather than acknowledging its limitations while wondering whether or not the revision could possibly meet its goals.

Finally, more than halfway through his letter, Regier began to address her concerns. “There was certainly some miscommunication” regarding proposals such as hers. He didn’t say what had been miscommunicated or by whom, but he did point out that at the time she applied for the research grant, the APA did not yet know what kind of data it would need or how it would be analyzed. Since then, he reassured her, the requirements had become clear. And while the APA was indeed not funding projects that cost more than $50,000—a pittance—still there was plenty of data out there. “Billions of dollars” (much of it, Regier didn’t add, government money) had been spent in the forty years since the current paradigm had been established. The fruits of this research were available in journals, and some work group members had even made their work available “as a professional courtesy.” This data would be the basis for the revision. The APA may have been strapped, but it was also resourceful. And, he reminded her, it was “the only entity with the standing, capacity, and willingness” to undertake a comprehensive revision.

As to the readiness of the dimensional measures, Costello need not worry. “A good number of us involved with this process,” Regier wrote, “have extensive experience in supporting the development of the previously mentioned instruments and would not diminish the standards used.” Haste will not make waste, he seemed to be saying, because the matter is safely in the hands of the experts—although, he admitted, it was possible that not all the tests would be ready when the DSM that required their use came out. Nor did the APA have, as some had charged, a mercenary intent in developing a host of new tests. “Our intent is to make all such instruments freely available for clinical and research use,” Regier wrote, “and to copyright them to insure their integrity.” So even if the dimensional measures weren’t fully developed in time for publication, he promised that researchers would be able to refine them afterward. He didn’t explain how clinicians and researchers would make diagnoses in the meantime.

Urgency justified haste; the desperation of psychiatry to meet the scientific demands of the day required desperate, or at least incompletely developed, measures. Regier was not refuting Costello at all. Instead, he was agreeing that the dimensional measures were nowhere near ready while suggesting that this was not the problem she thought it was. A living document is a messy thing, a lesser evil than a faulty document inscribed in stone. And anyway, wasn’t it Allen Frances who once said that psychiatric diagnosis is a sloppy business?

•   •   •

The APA didn’t make Regier’s response to Costello public at first. “
Since we considered
¹²
this a private matter, we did not broadcast this response as her letter was broadcast by some of our critics,” Regier explained when he provided it to me. But in private, the kvetching—and the fact that it was coming from people like Costello, Spitzer, and ultimately Frances, rather than, say, Tom Cruise—was causing unrest at headquarters. The APA’s board of trustees was growing concerned over the brewing feud. “
When there is smoke
¹³
,” trustee (and former APA president) Carolyn Robinowitz told me, “you have to make sure that you take a really in-depth look.”

In the summer of 2009, the board appointed Robinowitz to head a DSM oversight committee. The new committee didn’t exactly find a fire, but they did find smoldering trouble that was clearly not the work of the APA’s enemies. “The board was hearing from Dr. Regier and Dr. Kupfer that things were going pretty much on schedule,” she recalled. But then the committee talked to the work group members and discovered that “there was a certain amount of conflict,” Robinowitz told me. She was, I thought, straining to be diplomatic.

“Dr. Kupfer wanted to get a flow of ideas and issues,” she continued, but the rancor and disorganization within the groups indicated that this method was backfiring. Not that anyone should have expected anything but infighting “when you have a bunch of outstanding researchers strong in their beliefs and strong in their science,” but the result was that even the work group chairs thought “their stuff wasn’t quite ready for prime time.” Robinowitz’s panel concluded that “things weren’t moving as well as they might be. The process allowed for a lot of input, but it hadn’t begun to coalesce as much as it should have by that time.”