The Book of Woe: The DSM and the Unmaking of Psychiatry (15 page)

On the other hand, most of us won’t accept just any tale about our woes. We want our doctors’ stories about us to be based in fact, not opinion. We want them to make sense, which, if they start telling us that grieving the loss of a parent is an illness, they don’t. That’s why the bereavement exclusion was necessary: without it, the DSM loses its credibility, and the doctors who use it cannot perform their healing magic.

•   •   •

Spitzer did something else to juice the credibility of the DSM-III, something that no one else had done, at least not in a diagnostic manual:
he tried to define
disease
²³
. This is harder, and a lot more audacious, than it might seem. Like
life
and
obscenity
, disease is one of those phenomena that you might recognize when you see it—but go ahead and try to define it.

You have to admire Spitzer for making the attempt, for not simply cribbing
Webster’s
and then moving on to his list of diseases and the symptoms by which they would be known. But you also have to understand that he really had no choice. So long as psychiatry had no scientific knowledge about which ingredient was missing from the chemical soup roiling inside your head, so long, that is, as diagnosis was still a matter of a doctor deciding that you had a disease and then telling you which one it was, psychiatrists needed to be able to say with certainty how they made that decision, and why it wasn’t simply a matter of personal prerogative. They needed a definition that would serve as a gatekeeper to the kingdom of illness, that would reassure the public that the profession didn’t intend to claim sovereignty over all our troubles, that would keep homosexuality out and depression in—that would, as Spitzer put it in the introduction to DSM-III, “
present concepts that have influenced the decision
²⁴
to include certain conditions and to exclude others.” Without that barrier, DSM would not be a medical text but a collection of old wives’ tales.

Spitzer understood from the beginning that the commonsense definition of disease—“a progressive physical disorder with known pathophysiology”—simply couldn’t be stretched to cover mental illness. He finessed this problem by proposing that
disease
was only one of a number of
medical disorders
—conditions that had “negative consequences . . . an inferred or identified organismic dysfunction, and an implicit call to action.”
Mental disorder
, he argued
²⁵
, was “a medical disorder whose manifestations are primarily signs or symptoms of a psychological (behavioral) nature.” This was a clever move on Spitzer’s part, acknowledging that mental illnesses were not diseases in the usual sense, even as he preserved their place in “real medicine.”

But it wasn’t clever enough to sneak past the members of the American Psychological Association, who immediately recognized the proposal as a way to maintain physician dominion over mental suffering, and they sent a letter protesting it.

“
These guys have some chutzpah
²⁶
,” Spitzer groused to the APA’s president as he prepared a letter in response. But he didn’t dispute the psychologists’ conclusion. Indeed, he may have gotten a fight he’d been spoiling for all along. He suggested that the exchange of letters be “made public to our membership, as it would be another way of demonstrating our conviction that psychiatry is a specialty within medicine. It would also make it clear to our profession that DSM-III helps psychiatry move closer to the rest of medicine.” If they saw their generals aggressively moving to consolidate their power, Spitzer thought, the morale of the rank and file might improve.

The definition Spitzer finally settled on wasn’t quite so chauvinistic as the original. But it had plenty of its own chutzpah.

In DSM-III each of the mental disorders
²⁷
is conceptualized as a clinically significant behavioral or psychological syndrome or pattern that occurs in an individual and that is typically associated with either a painful symptom (distress) or impairment in one or more important areas of functioning (disability). In addition, there is an inference that there is a behavioral, psychological or biological dysfunction, and that the disturbance is not only in the relationship between the individual and society. (When the disturbance is
limited
to a conflict between the individual and society, this may represent social deviance, which may or may not be commendable, but is not by itself a mental disorder.)

Mental disorder occurs, Spitzer seems to be saying, when something has gone wrong in the mental apparatus, and the result is distress or disability. But what is the tip-off that something has gone wrong? The presence of distress or disability, of course. And how can a doctor determine whether it is
clinically significant
? The definition doesn’t specify, but one obvious method is to say that the mere fact that a patient’s suffering is significant enough to make him or her show up at the clinic suffices. And once the patient has arrived, who gets to decide whether the disturbance is limited to a conflict between individuals and society, whether, say, an impoverished person’s distress is caused by poverty or internal dysfunction? Doctors, of course, who might be no more reliable at judging whether a person needs psychiatric treatment than barbers are at judging whether a person needs a haircut.

This definition, an obvious response to the homosexuality debacle, was an attempt by the general to fight the last war, and it doesn’t really make diagnosis any less circular. Indeed, it just places the already circular definitions of the individual mental disorders inside the larger circle of clinical significance. And in case you weren’t dizzy enough, the DSM-III-R added one more loop: “
The syndrome or pattern
²⁸
must not be merely an expectable and culturally sanctioned response to a particular event.” For its part,
DSM-IV devoted seven of its 886 pages
²⁹
to a list of “culture-bound syndromes,” including
ataque de nervios
, an “idiom of distress” common in Latin American groups that an unsuspecting doctor might mistake for an anxiety disorder;
pibloktoq
, an “abrupt dissociative episode” found among Eskimos, in which a person might rend his or her garments, break furniture, or eat feces, but does not suffer from mania or Dissociative Identity Disorder; and
koro
, an “intense anxiety that the penis will recede into the body and possibly cause death” that sometimes afflicts Malaysians but which should not be mistaken for a psychosis or Depersonalization Disorder
.

The impetus here is obvious. The gay activism that led to the deletion of homosexuality was on the leading edge of the identity politics that took hold in the 1980s and 1990s. The DSM had to keep up with the times, to reassure the public that psychiatrists were not out to pathologize mere difference or to declare certain identities inherently sick. But how is a physician to know what responses we should expect of ourselves when confronted by unprecedented events like 9/11 or the financial meltdown of 2008? Why is a response that is neither expectable nor culturally sanctioned, but clearly justified, such as, say, occupying Wall Street, any more disordered than blithely taking home multimillion-dollar bonuses for running a company into the ground? And why do doctors get to decide which, if any, of those behaviors is symptomatic of Antisocial Personality Disorder?

Like the bereavement exclusion, these definitions don’t really serve to limit psychiatry’s prerogative to decide what is sick and what is healthy. Instead, they daub whitewash over the fractures in its conceptual infrastructure. And the result is an edifice that holds up only if you don’t place any weight on it.

In this respect, all these loopholes are not unlike epicycles, the little curlicues Ptolemaic astronomers built into the orbits of planets to account for why the heavenly bodies were not where they should have been if they moved, as Ptolemy said they must, in perfect circles. Epicycles, not unlike the codicils and caveats in the DSM, are a way to stave off the challenge of the enemy, intended more to preserve the authority of a profession and the dominion of its paradigms than to get to the truth. Unlike the DSM, epicycles have already gone down in history as the epitome of bad science.

I
f psychiatry’s attempt to close the gap between opportunity and knowledge with a definition of mental disorder will always yield bullshit, psychiatry’s aspirations to scientific respectability are still not doomed—at least not according to Allen Frances. But you have to be willing to accept one premise: that, as he puts it, “
psychiatric classification is necessarily
¹
a sloppy business.”

But even if the definition of mental disorder is bullshit, Frances thinks, the mental disorders themselves are not. The categories may be arbitrary, their existence impossible to prove, and the lines between them as artificial as the lines between countries, but the fact is that an identifiable group of people do, for instance, have “
recurrent and persistent thoughts
²
” that are “intrusive, inappropriate and cause marked distress,” that are “not simply excessive worries about real-life problems,” that can only be suppressed by some “other thought or action,” and that are recognized as “a product of [the patient’s] own mind.” To say, as the DSM-IV does, that those people have Obsessive-Compulsive Disorder is not, in Frances’s view, to make any grand claims about how (or even whether) mental illness exists in nature. It is only to glean from research what unites this population of sufferers and then to capture it in language that helps clinicians communicate with patients and colleagues and that provides researchers with categories for their work in developing treatments. A DSM diagnosis may be a construct, in other words, but it is not
only
a construct.

Neither does using a label require some guiding definition about whose troubles are illness and whose mere suffering. Implementing labels requires only a faithful observation of people who come to doctors’ attention, a careful sorting of patients, a scrupulous attention to detail in fashioning the criteria, and then a highly skilled, careful clinician, one to whom the sloppiness of classification is a reason to exercise caution. And if all those conditions are in place, the criteria will indeed detect populations who can then be served by doctors alerted to the contours, if not the exact nature, of their patients’ troubles. The diagnostician, to use one of Frances’s favorite metaphors, is not so much a pathologist looking for a virus in a blood sample as he is a baseball umpire trained to call balls and strikes—even if an agreement to abide by an ultimately arbitrary tradition is the reason that pitches have those names and the strike zone has the exact boundaries that it does.

That’s why Frances was so galled by the ambition that he saw in his successors, and why they seemed so reckless to him: they had failed to account for the fragility of a system that hinges on rules inscribed in language rather than on lab tests encoded in numbers. They were heedless of the possibility that once doctors started speaking the revised language, all kinds of hell could break loose. And even worse, they seemed to have lost track of the people who would be consigned to that hell: the patients.

“
A diagnosis is a call to action
³
with huge and unpredictable results,” he said. “No decision can be right on narrow scientific grounds if it winds up hurting people.”

The Bipolar II epidemic was a case in point. There was no question in Frances’s mind that making a new diagnosis was the correct decision on narrow scientific grounds. Research clearly showed that people who became manic after starting antidepressants tended to have a history of hypomanic episodes and that those spells tended to last for less than the week required for a diagnosis of mania. But he failed to consider how many people would get hurt if the diagnostic threshold was lowered, how easy it would be for a harried doctor to render the diagnosis and write a prescription with the pen supplied by the drug company rep who had just taken her to lunch. Real-life psychiatric diagnosis could not take place in a bell jar filled with experts and their pet theories. There would always be unintended consequences. That’s what Frances said he was trying to say to the DSM-5 leaders. “
I just wanted them to learn
⁴
from my mistakes.”

•   •   •

Even if definitions of mental disorder weren’t bullshit, they wouldn’t solve the validity problem, at least not by themselves. To declare a boundary between illness and health is not to guarantee that any particular category of illness is real. In fact, definitions could worsen the problem. “
One of the reasons
⁵
that diagnostic classification has fallen into disrepute,” Eli Robins and Samuel Guze wrote in 1970, “is that diagnostic schemes have been largely based upon
a priori
principles rather than upon systematic studies.”

Robins and Guze were leaders of the team at Washington University that developed the descriptive approach that Spitzer adopted for DSM-III. They recognized that the history of science, and especially of medicine, was littered with examples of prejudice-blinded researchers following their often unacknowledged traditions and principles down dead-end alleys. These beliefs aren’t always as dunderheaded as the ones that shaped Samuel Cartwright’s understanding of a slave’s thirst for freedom or Freud’s notions about same-sex attraction. In the nineteenth century, for instance, doctors believed that illnesses should be classified by their signs and symptoms—a conviction that had prevailed since Hippocrates had given birth to Western medicine, and which was not unreasonable, given that doctors had little else to go on. So there was really no reason to doubt that patients with genital sores were suffering from a disease different from what patients with a skin rash had, and patients with general paresis, a form of dementia, had yet another illness. There wasn’t even a reason to think that this scheme was based on any a priori
principle, that it was anything other than a faithful account of how nature itself sorted diseases.

That all changed when some doctors, notably Louis Pasteur and Robert Koch, began to insist that there was more to disease than met the unaided eye. Beneath the appearances, the pustules and the fevers and the complaints, was a microbial world populated by the real sources of illness. And if the detectable presence of viruses and bacteria was not convincing enough, the successes of pasteurization and anthrax inoculations soon had doctors abandoning those first principles and peering into microscopes to find the germs that caused diseases. Among the first organisms they spotted was a
spirochete
, a spiral-shaped germ they named
Treponema pallidum
, which was present in patients with sores, rashes, and dementia alike.
They concluded that
T. pallidum
⁶
was the natural formation that united those scattered particulars, which they now recognized as different stage of syphilis. By century’s end, doctors were asking questions about bacteria and viruses in addition to signs and symptoms, and seeking cures in drugs that targeted those microbes rather than remedies tailored to those outward appearances. Unfettered by archaic beliefs, they were free to find the truth about what ailed us.

But a century after the advent of the germ theory, as Robins and Guze knew too well, psychiatrists had yet to discover a “schizococcus” bacterium or a “depressenza”
virus or anything else that would reduce the profession’s dependence on a priori principles, and the disasters of the late 1960s and early 1970s were the result. So the two men proposed a solution that they thought could keep descriptive psychiatry safe from belief, at least until those bugs could be found:
a five-step process toward validity
⁷
that, so they said, required no assumptions, that purely through the accretion of evidence would converge to confirm (or disconfirm) that an alleged disease really existed.

Start with clinical description, Robins and Guze said, with a careful account of how patients present themselves, and establish the criteria that link similar patients. Add laboratory studies—including psychological tests—that will confirm (or not) that those people belong together. Develop exclusion criteria so that a patient who is, say, depressed but also has hallucinations and delusions gets grouped with the schizophrenics rather than the depressives. Do follow-up studies to make sure that the people you’ve grouped together have similar outcomes, as you would expect if they were suffering from the same disease. And study the patients’ families to see if their members share symptoms, which would indicate that there is some genetic link among the patients. By working all of these angles, they argued, doctors would eventually accumulate enough evidence to say which mental disorders were valid and which were only figments of an enthusiastic doctor’s imagination.

But nearly forty years after Robins and Guze proposed these validators—four decades in which criteria for inclusion and exclusion were written and rewritten, tests conducted, families studied, and patients followed—Darrel Regier told the
Psychiatric News
that “
validity tests . . . have not lived up
⁸
to the expectations of Robins and Guze.” Even after Virginia Commonwealth University behavioral geneticist
Kenneth Kendler added another validator
⁹
—differential response to treatment, on the questionable grounds that a response to an antidepressant, for example, confirmed that the patient had MDD in the first place—the patterns that had emerged were weak and confusing. Indeed, by 2010 Kendler himself was still complaining that “
the [diagnostic] categories
¹⁰
in use have been heavily influenced by expert opinion, which . . . has been heavily influenced by
a priori
factors.”

Psychiatrists had evidently been fooled again. The new a priori—Spitzer’s principle that mental disorders could be classified by their criteria—has led them “
to consider our major diagnostic categories
¹¹
to be obvious and even ‘natural,’” Kendler wrote, when, in fact, they were “fuzzy constructs that shift when viewed in different ways.” These benighted psychiatrists had fallen for their own ruse. They had forgotten that the DSM was fashioned by experts, which meant that the diagnostic categories tended to reflect the a priori principles of those experts—which, of course, the rank and file largely shared. “We cannot develop a progressive scientifically based nosology shaped by a single expert-driven conception of psychiatric illness, no matter how wise its advocate,” Kendler wrote. Evidently, it is one thing for the public to believe the experts, and quite another, at least in the view of one key opinion leader, for the experts to believe themselves.

But Kendler wasn’t ready to get rid of the experts and replace them with, say, a WikiDSM. Nor was he joining with the “
critics of psychiatric diagnoses
¹²
,” who, so he wrote, insisted that “there is no truth out there” and who would simply give up on the DSM. Indeed, he became a member of a DSM-5 work group and eventually the head of a committee reviewing its scientific soundness. But like Frances, he thought revisers took on a “heavy and conservative burden.” They had to avoid the kind of bruising battles in which “different constituencies in psychiatry . . . vie with each other for influence and control,” and, upon seizing power, “reshape the nosologic system in their own
a priori
image.” The result, he feared, would be “wide fluctuations between different systems with divergent theoretical perspectives and no net progress.”

Kendler didn’t point out, because he didn’t need to since his intended audience knew it in their bones, that DSM-III was about as wide as a fluctuation can get. Bob Spitzer seized power, wrenched psychiatry away from its Freudian principles, and reshaped it in his own image. He might have gotten away with imposing this profession-saving paradigm shift by sheer force of will, but it was a desperate measure taken in desperate times, and not one you would want to repeat—especially if you want your revisions to lead to a closer approximation of the reality of mental illness and your constituency to have more faith in you than they do in other institutions known more for their thrashings over divergent theoretical perspectives than their net progress, like the United States Congress.

That goal is possible, Kendler wrote, but only if changes are made slowly and carefully. In fact, if you are careful enough, a good outcome is nearly guaranteed, thanks to the process of
epistemic iteration
, a concept Kendler borrowed from mathematics, where it is defined as:

A historic and scientific process
¹³
in which successive stages of knowledge . . . build in a sequential manner upon each other. . . . When correctly applied, the process of epistemic iteration should lead through successive stages of scientific research toward a better and better approximation of reality in a “spiral of improvement.”

It’s easy to see the appeal of this promise. Kendler himself is the researcher who reported that when Walter Cassidy, the psychiatrist who first proposed diagnostic criteria for depression, was asked why he set the threshold at six out of ten symptoms, he responded, “
It sounded about right
¹⁴
.” If you know that your origins are murky and your tools blunt, and yet you want to claim that you are nonetheless heading toward clarity, then it behooves you to put your money on a “
wonderful property of iteration
¹⁵
” and its “capacity to get to the real solution regardless of the starting point.”

And if you know that your nosology has gyrated wildly through the years, that it has been buffeted by history, its a priori principles brought to light and debunked and hidden away again, if you know that the doubt thus kindled will become your enemies’ weapon, if you know that you and your allies must be able to “
assure ourselves
¹⁶
that each revision of our manuals contains improvements on its predecessor,” then what better talisman to carry into battle than epistemic iteration, with its nearly magical power to ensure that even as you are making your mistakes, truth is all along accumulating, that those fluctuations are really only what Kendler calls “
wobbly
iterations
¹⁷
,” that every day in every way your map of our suffering is getting better and better, and that sooner or later, the experts, well versed in expertise, will produce a DSM that, as Kendler puts it, “
asymptotes to a stable and accurate
¹⁸
parameter estimate”?