The Book of Woe: The DSM and the Unmaking of Psychiatry (18 page)

The group also acknowledged that the research had not really demonstrated that TDD was a better-fitting diagnosis than ODD. To the contrary, it had shown that nearly all TDD patients could also be seen as suffering a particularly bad case of ODD, so they could be diagnosed that way, using a severity specifier that would indicate that the kid had the TDD form of ODD—a move that would avoid the uncertainties and wrangling involved in manufacturing a brand-new diagnosis.

In addition, they confessed, “the work has been done predominately by one research group in a select research setting.” This was important because the whole point of criterion-based diagnosis is to allow real-life clinicians—as opposed to elite researchers who know what they are looking for and get to look for it in patients preselected for the purpose—to reach the new diagnosis strictly by applying the criteria. The possibility existed, in other words, that TDD would not be a reliable diagnosis and would only add to the confusion about these patients.

Finally, the fact that this one team had generated “relatively little research” also created the potential for the disorder to be “prematurely reified.” The work group didn’t explain this cryptic comment. Were they worried that doctors (or parents) would make the common error, the one that Hyman and Mirin and every other DSM expert warned about, of thinking that a disease listed in the official manual of mental disorders and used as the basis for research, treatment, and reimbursement actually existed? Or were they only worried that the disorder, with its scant research record, didn’t yet deserve
to be reified, or, to put it another way, that TDD wasn’t even ready to provide fodder for the error that, no matter how regrettable, was indispensable to the industry?

What the justification didn’t mention was that the work group was headed by one of those researchers and that Ellen Leibenluft was one of its eight members. Which may or may not explain why the group dismissed its doubts almost as quickly as it raised them. Even if “the scientific data may suggest defining TDD as a specifier to ODD,” clinicians “would be unlikely” to use it—not only because it takes a few extra minutes to assess and note severity, but also for the reason David Shaffer noted: ODD’s bad reputation. “Indeed,” the work group argued, “it is plausible that clinicians assign the diagnosis of BD . . . in part because the BD diagnosis justifies access to a higher level of resources.”

Their license to go beyond the science in this fashion, the work group explained, came right from the top, from a task force that had specifically instructed them to weigh “clinical considerations in the decision as to whether to propose a new diagnosis.” Questions of clinician time and insurance reimbursement, not to mention any tarnish on the diagnosis, were significant in the clinic. And there were benefits beyond insurance payments: once the diagnosis was established, if not reified, it would jump-start researchers’ efforts to fill in the gaps in the data, attracting money to study the new disorder.

If, in their zeal to make sure that children (and, of course, their doctors) had access to resources, it occurred to the work group that their efforts might amount to swallowing a spider to kill a fly, or that there were other, simpler ways to repudiate Biederman (such as adding an exclusion criterion or just calling the cops on the crook, if indeed that’s what he was), or if they understood that manufacturing a new mood disorder was like throwing fresh meat to the pharmaceutical industry, or if they noticed that by advancing a diagnosis that wasn’t even ready to be reified, they were suggesting a long-term public health experiment whose subjects (children and doctors both) would be unaware of their participation, they didn’t say. But then again, hadn’t Kupfer and Regier said that this DSM would be a living document?

•   •   •

Indeed they had, and on March 9, the APA made this official when
it announced a new “naming convention
¹³
.” The upcoming revision would be known as DSM-5, not DSM-V, and henceforward all new DSMs would likewise be identified with Arabic, rather than Roman, numerals. The new name, like Shaffer’s TDD, replaced the arcane with the familiar, but for reasons different from his. “Knowledge of neurobiology will continue to advance,” APA president Alan Schatzberg said in the press release. The purpose of the change was not to capture hearts and minds, but to make room for the scientific advances that hadn’t happened yet, by turning the DSM into “a document that can respond more quickly when a preponderance of research supports a change.” The APA hadn’t quite figured out the details, whether, say, it would grant purchasers of the new book a license to download updates as new research developed or just turn the whole business over to Amazon, but one thing was certain: after DSM-5 came “DSM-5.1, DSM 5.2, etc., until a new edition is required.” DSM-5, evidently, was going to be beta-tested.

David Kupfer seemed to anticipate the problem hidden in the new convention—that it more or less announced that the foundational text of his profession, the one that provided certainty about matters of vital importance to insurers and regulators and drug companies and patients, was provisional—when he reassured the public that “our primary commitment will continue to be to create a manual that is based on science and is useful in diagnosing and treating patients.”

Darrel Regier also telegraphed comfort, first to his colleagues—“By making the DSM-5 a living document, we will ensure that the DSM will remain a common language in the field”—and then to the rest of us: “It will hasten our response to breakthroughs in research.” What exactly we were supposed to do before those breakthroughs could occur, he didn’t exactly say. The framers of the DSM-5 may have been replacing the Bible with a living document, but they were still asking us to take them on faith.

•   •   •

Naming conventions were definitely on Alan Schatzberg’s mind when he delivered his outgoing presidential address to the May 2010 APA annual convention in New Orleans.

Schatzberg reminded his troops that they were still at war. Our “detractors” may be hypocritical—they don’t criticize neurologists for talking about minor cognitive impairment, after all, and they don’t seem to understand that they are stigmatizing psychiatry out of fear and ignorance and “antipsychiatry sentiment” rather than for anything psychiatry has done wrong. And, Schatzberg continued, psychiatrists themselves were making it far too easy for their enemies by using a “
distinctly unmedical
¹⁴
” language to name their diseases. “The proposed temper dysregulation disorder . . . does not convey” the seriousness of the condition, and, unlike the cardiologists’ recasting of
heart attack
as
myocardial infarction
, it had no “parallel and more medical terminology.” Psychiatrists were the victims once again, this time of their own just-folks language.

“
Some of the attacks
¹⁵
have been by English and history professors,” Schatzberg said. “My friends, this does present a problem we need to think about. Everyone feels emotions; everyone reads pop psychology articles or watches pop psychologists on TV; and many come to believe they are experts in psychiatry.” It was time to draw the line between the civilians who had those emotions and the experts who knew what they really meant, and the best way to do this might be to shroud nosology in the “Latin and Greek terms” used by other specialties.

“We need to be more medical to be taken seriously,” Schatzberg concluded.

Schatzberg had some other bad tidings for his membership. After noting that
New Orleans had “risen as the Phoenix
¹⁶
from the horrors of Katrina to rebuild itself” (with the help of psychiatrists, he added) and that the theme of the convention was “Pride and Promise: Toward a New Psychiatry,” he told them that their finances were turning to ashes. Revenues had shrunk by $10 million, to $55 million, largely because of a recession-related drop-off in drug company advertising in the APA’s journals.

Another pool of drug company money had also dried up, thanks to the decision to stop letting the industry fund the APA’s education programs. In Schatzberg’s reading, this renunciation wasn’t quite as noble as Jay Scully had made it out to be, or as unilateral. In fact, Schatzberg said, “
the negative attacks on industry
¹⁷
have made them gun shy of supporting such programs.”

As perhaps befits a man who had made Chuck Grassley’s hit parade, Schatzberg regretted this development. “
There are a number of new drugs
¹⁸
that have been recently released that many of us know little about,” he said, “and that cannot be good for either us or our patients.” (Apparently, Schatzberg couldn’t imagine another way for doctors to learn about new drugs other than from the sales forces of the companies that make them; perhaps he also buys his cars based on what his dealer tells him.) “The strident debate and attacks have obfuscated the negative impact of eliminating industry from our offices,” he complained.

As unjust as it might have been, however, the drug company purge seemed irreversible. The APA was going to have to make up that $10 million deficit somehow. The organization won’t say how much revenue it anticipates from a new DSM, but you don’t have to run a meta-analysis to figure out that a new book would be worth far more at its outset than the $6 million the DSM-IV generated in 2010. Leaders of the APA would not confirm the old suspicion that money was a driving force behind the revision (although one trustee did tell me that “it would be disastrous not to get that income”), but that looming bonanza had to be looking pretty good—if only they could get their hands on it.

A
llen Frances wasn’t limiting himself to his blogs, which by mid-2010 were appearing on three different websites and broadcasting a steady tocsin of impending doom. He also published articles in medical journals and on newspaper websites, and gave interviews to all the journalists attracted to the spectacle of a leader of the orthodoxy accusing his fellow priests of heresy. He may not have been a Quixote, but he was surely less a Sancho Panza than a Paul Revere, shouting warnings into the night: the DSM-5 was coming!

In August, Frances sounded his alarm from the op-ed page of
The New York Times
, where he declaimed against the proposal to remove the bereavement exclusion from the depression diagnosis. “
Turning bereavement into major depression
¹
,” he wrote, “would substitute a shallow, Johnny-come-lately medical ritual for the sacred mourning rites that have survived for millenniums.” An appointment with a psychiatrist, at least according to this prominent practitioner, was no simple office visit. It was a ritual, and it wasn’t even the best ritual available for at least one common form of suffering.

Frances understood by then that his views could be exploited by psychiatry’s enemies and that the higher his profile became, the greater the risk that people would get the wrong message. Already some critics of psychiatry had been quick to use him to further their own idea that DSM diagnoses were just-so stories. But that is not what he meant, he said. “
Sure, there’s a reality out there
²
, but we have an incomplete perception of it. We see through a glass darkly, but that doesn’t mean we don’t see at all.” Uncertainty was inescapable, but it could be reduced—and inevitably would be, he thought. As neuroscience comes into its own, he told me, and “the complexity begins to clarify out of the mist, diagnoses will become better and better constructs, ever closer to a reality that will always be elusive to our limited powers of apprehension.”

At stake, Frances insisted, was something more immediate and urgent than intellectual controversy or internecine warfare: the care of patients, particularly those who might be “wavering about treatment and attracted to an antipsychiatry point of view.”

“They would not be able to do the calculation,” he told me, to say, “‘Well, maybe this isn’t perfect, but it’s still the best way available, and we shouldn’t just throw it out.’” Every blog and interview drew back the curtain on psychiatry’s inner workings a little further, threatening to make the whole field look like humbug. “I’m reluctant to reveal all the
Wizard of Oz
stuff,” he said, “because I don’t want people who need help to get disillusioned and stop taking their medicine.”

From Plato to Saint Paul to Heisenberg to Baum—it was a typical Allen Frances ramble. And it ended right back in Plato’s
Republic
. “
The full truth
³
is usually best,” Frances said, “but sometimes we may need a noble lie.”

•   •   •

Beneficence
—the doctor’s obligation to act in the best interests of his or her patients—has long been considered a core value of medicine. In its name, doctors have routinely lied to patients, or at least stretched the truth, withholding terrible prognoses from terminally ill people, for instance, or overstating the effectiveness of a treatment. In recent years, another core value has come to the forefront:
autonomy
, the right of the patient to determine the course of his or her treatment. To uphold this principle, at least according to some medical ethicists, doctors need to curtail their beneficence, or at least not use it as a reason to be less than transparent with their patients, so they can make fully informed decisions. And the Internet, much to many doctors’ dismay, has opened curtains that they would like to keep completely shut. The two principles continue to vie for primacy, and some of that tension can be seen in Frances’s concerns about what the public should know about the nature of psychiatric nosology.

It’s easy enough to see this as self-serving, to say that lying can’t be noble, at least not when it is used to maintain an authority that might not survive a full disclosure. Plato might well have been appalled to see how the control of information would be used by Machiavelli or Dostoevsky’s Grand Inquisitor or Dick Cheney. But you can’t really blame Plato for being naive about the attractions of power or for not seeing how useful noble lies could be to people who want to hold on to it. He lived before autonomy and equality were expectations for a good life, before universal justice was the hallmark of a good society, and before a couple thousand years of history had revealed what can happen when people with power—even virtuous people—act in the supposed interests of those with none.

Not that Frances’s concern about the effect of diagnostic squabbling on patients was less than beneficent or only about maintaining psychiatry’s dominion over our inner lives. “
Like most medical specialties
⁴
, our field depends heavily on placebo effects,” he pointed out. And pills aren’t the only way to deliver the placebo effect. Even if “the diagnostic label is just a description, and not really an explanation for what has gone wrong,” Frances says, still it is crucial to treatment. Delivering a diagnosis gives us solace: that we are not making it up, that the doctor understands, that there are others like us, that there is hope for a cure.

“If you puncture that noble lie,” Frances warned me, “you’ll be doing a disservice to our patients.”

But indiscreet writers aren’t the only people who pose a danger. “A doctor saying you have depression, that’s part of the treatment—so long as you don’t go overboard in promising that everything can be explained through chemical reactions and it doesn’t have anything to do with the fact that your wife died last week.” This was the risk Frances saw in removing the bereavement exclusion: that doctors would feel free to deliver that verdict to grieving patients, that indeed the DSM would more or less oblige them to do so. And given what Frances calls “the ignorance of philosophy of the average practitioner,” not to mention the pressures on him or her to be efficient and to provide relief, doctors might not even know how careful they needed to be about exercising their diagnostic power, how easily it could be ignobly—and globally—deployed. Psychiatric diagnosis, it seems, is more sophisticated than most clinicians realize. Getting rid of the bereavement exclusion would invite not only the overtreatment of patients but, after the inevitable backlash, yet another credibility crisis for the profession.

•   •   •

On the other hand, you have to appreciate the problem that the bereavement exclusion presented to the shapers of the DSM-5.

Some people who weren’t enemies of psychiatry thought they smelled a rat even if it wasn’t the one that antipsychiatrists smelled. To New York University professor of social work Jerome Wakefield, for instance, the bereavement exclusion itself wasn’t such a bad idea. It prevented a person who had all the symptoms of an illness, but who wasn’t really sick, from getting mistakenly diagnosed. The exclusion, he wrote, protected patients from “
stigmatization [and] inappropriate care
⁵
” and psychiatry from “inflated epidemiological prevalence rates that undermine the credibility of the diagnostic system.” And its caveats—that people who were suicidal or otherwise dysfunctional, or whose symptoms persisted beyond two months of the death should not be excluded—prevented doctors from dismissing severe symptoms as normal reactions and thus ensured that patients who needed treatment could get it.

So far, so good. But Wakefield thought there was a deeper problem. Why, he wondered, did the book “
ignore the many other kinds
⁶
of serious losses that can cause intense symptoms of normal sadness”? Was it possible that not enough people were protected from the potential harms of diagnosis?

Wakefield and a team of researchers that included Michael First designed an experiment to find out. They mined the National Comorbidity Survey (NCS), the NIMH project that demonstrated that 60 percent of mentally disordered people qualified for more than one diagnosis. As it happened, the NCS researchers had asked subjects not only about recent bereavement, but about whether there was “anything else going on” that might have caused them to “feel sad or blue.” This created an opportunity for a researcher who, like Wakefield, was curious about whether there was a difference between the bereaved and people who had suffered other losses.

Of the 1,308 NCS subjects with major depression, 157 reported that their symptoms had been set off by a bereavement and 710 said that a different kind of loss had triggered them. Wakefield then examined to what extent those two groups differed along two dimensions:
disorder indicators
, such as how many symptoms of depression they had or how long they lasted; and
symptom group
, which of the nine depression symptoms they reported. It turned out that there was virtually no difference between the two groups in either dimension. Divorce, death of a loved one, financial setback—each was as likely as the others to leave a person sad or apathetic or insomniac, as likely as the others to send a person to a therapist or a doctor for an antidepressant.

Wakefield further divided his subjects into
uncomplicated
and
complicated
groups. Complicated subjects were those with the severe symptoms, such as suicidal thoughts or the inability to function, that would have disqualified them from the bereavement exclusion, and uncomplicated subjects . . . well, you figure it out. Not surprisingly, people in each group resembled one another more than they resembled people in the other group who had suffered the same kind of setback. Loss is loss, in other words. What differs is how we respond to it, not what we are responding to.

Taken together, these two findings—that no matter what the precipitating event is, it has the same effects, and that the main difference is in the intensity of response—indicated that there was no scientific reason to treat the death of a loved one differently from other losses. The experiment was simple, elegant, and conclusive. The bereavement exclusion was arbitrary and incoherent, and if that was so, then the MDD criteria were not able to sort the well from the sick.

In
The Loss of Sadness
, Wakefield and his coauthor, sociologist Allan Horwitz, made it clear that more was at stake than the bereavement exclusion. Even if we accept the inescapable fuzziness of psychiatric diagnoses, they argued, still a nosology must have some kind of integrity, lest the DSM “
define every undesirable consequence
⁷
of sadness as a disorder.”

“
Psychiatry has made immense strides
⁸
in recent decades,” they wrote, but one thing it had not figured out was how to limit its tendency to “engulf all the problems that life poses.” The solution was not to abandon the depression diagnosis, even if the bereavement exclusion constituted a “compelling, clear and major violation of validity.” Instead, they wrote, the diagnosis “should be fixed.” And the best way to do that was to expand the exclusion beyond bereavement to “other major life stressors” so that clinicians could distinguish between
disorder
and
distress
, and diagnose and treat people accordingly. Forcing clinicians to consider the actual life experience of their patients would limit the damage that their diagnoses could do even as it maintained their ability to help patients.

“
There are few signs
⁹
that changes in the MDD criteria are a high priority for the . . . DSM-V,” Wakefield and Horwitz concluded. But that was in 2007, before their book became a minor sensation, and just as a spate of other books and articles complained that depression was getting overdiagnosed and, not coincidentally, antidepressants alarmingly overprescribed. And as the DSM-5 revision geared up, it became clear that researchers concerned about psychiatry’s overstepping weren’t the only people disturbed by the bereavement exclusion.

“
It just doesn’t make any sense to me whatsoever
¹⁰
,” psychiatrist Sidney Zisook told me on the phone. “Maybe it did when I first got into the field, but not anymore.”

But Zisook’s objection was different from Wakefield’s. It wasn’t the double standard—the fact that only the grieving were eligible for a reprieve from diagnosis—that bothered him. It was the assumption that bereavement-related depression (BRD), as he called the suffering covered by the exclusion,
was somehow different from standard major depression (SMD). If the two were not different in nature, if, in other words, the only difference between BRD and SMD was in their cause, then there really was no difference between them, no reason to distinguish patients according to their recent experience.

In 2007, working with Ken Kendler,
Zisook did some data mining of his own
¹¹
. He extracted information from about fifty studies conducted over three decades and comprising more than eight thousand depressed subjects, only some of whom met the exclusion criterion. They looked at the Robins and Guze validators—family history and other demographics, overall health (mental and otherwise), lab tests, response to treatment, and the course and outcome of the patients’ troubles. And while some of the evidence was inconclusive—it wasn’t clear whether BRD ran in families, for instance—most of the results showed that BRD was no different from SMD. Bereaved people who had the symptoms of depression were no different from other patients who had the symptoms. Wakefield had proved that loss was loss; now Zisook and Kendler had shown that depression was depression, regardless of its cause.

Zisook and Kendler were careful with their conclusions, at least at first. Their analysis only “
provides some support
¹²
, although indirect and limited,” they wrote, “that excluding recently bereaved individuals from the diagnosis of MDE [Major Depressive Episode] . . . may not be justified.” And pending further research, “the most propitious conclusion may be that, on average, these two syndromes [BRD and SMD] appear to be closely related.”