Healthy Skepticism Library item: 19007
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Publication type: Magazine
Greenberg G
Inside the Battle to Define Mental Illness
Wired 2010 Dec 27
http://www.wired.com/magazine/2010/12/ff_dsmv/all/1
Full text:
Every so often Al Frances says something that seems to surprise even
him. Just now, for instance, in the predawn darkness of his
comfortable, rambling home in Carmel, California, he has broken off
his exercise routine to declare that “there is no definition of a
mental disorder. It’s bullshit. I mean, you just can’t define it.”
Then an odd, reflective look crosses his face, as if he’s taking in
the strangeness of this scene: Allen Frances, lead editor of the
fourth edition of the American Psychiatric Association’sDiagnostic and
Statistical Manual of Mental Disorders (universally known as the DSM-
IV), the guy who wrote the book on mental illness, confessing that
“these concepts are virtually impossible to define precisely with
bright lines at the boundaries.” For the first time in two days, the
conversation comes to an awkward halt.
But he recovers quickly, and back in the living room he finishes
explaining why he came out of a seemingly contented retirement to
launch a bitter and protracted battle with the people, some of them
friends, who are creating the next edition of the DSM. And to
criticize them not just once, and not in professional mumbo jumbo that
would keep the fight inside the professional family, but repeatedly
and in plain English, in newspapers and magazines and blogs. And to
accuse his colleagues not just of bad science but of bad faith,
hubris, and blindness, of making diseases out of everyday suffering
and, as a result, padding the bottom lines of drug companies. These
aren’t new accusations to level at psychiatry, but Frances used to be
their target, not their source. He’s hurling grenades into the bunker
where he spent his entire career.
As a practicing psychotherapist myself, I can attest that this is a
startling turn. But when Frances tries to explain it, he resists the
kinds of reasons that mental health professionals usually give each
other, the ones about character traits or personality quirks formed in
childhood. He says he doesn’t want to give ammunition to his enemies,
who have already shown their willingness to “shoot the messenger.”
It’s not an unfounded concern. In its first official response to
Frances, the APA diagnosed him with “pride of authorship” and pointed
out that his royalty payments would end once the new edition was
published — a fact that “should be considered when evaluating his
critique and its timing.”
Frances, who claims he doesn’t care about the royalties (which amount,
he says, to just 10 grand a year), also claims not to mind if the APA
cites his faults. He just wishes they’d go after the right ones — the
serious errors in the DSM-IV. “We made mistakes that had terrible
consequences,” he says. Diagnoses of autism, attention-deficit
hyperactivity disorder, and bipolar disorder skyrocketed, and Frances
thinks his manual inadvertently facilitated these epidemics — and, in
the bargain, fostered an increasing tendency to chalk up life’s
difficulties to mental illness and then treat them with psychiatric
drugs.
The insurgency against the DSM-5 (the APA has decided to shed the
Roman numerals) has now spread far beyond just Allen Frances.
Psychiatrists at the top of their specialties, clinicians at prominent
hospitals, and even some contributors to the new edition have
expressed deep reservations about it. Dissidents complain that the
revision process is in disarray and that the preliminary results, made
public for the first time in February 2010, are filled with potential
clinical and public relations nightmares. Although most of the
dissenters are squeamish about making their concerns public —
especially because of a surprisingly restrictive nondisclosure
agreement that all insiders were required to sign — they are becoming
increasingly restive, and some are beginning to agree with Frances
that public pressure may be the only way to derail a train that he
fears will “take psychiatry off a cliff.”
At stake in the fight between Frances and the APA is more than
professional turf, more than careers and reputations, more than the
$6.5 million in sales that the DSM averages each year. The book is the
basis of psychiatrists’ authority to pronounce upon our mental health,
to command health care dollars from insurance companies for treatment
and from government agencies for research. It is as important to
psychiatrists as the Constitution is to the US government or the Bible
is to Christians. Outside the profession, too, the DSM rules, serving
as the authoritative text for psychologists, social workers, and other
mental health workers; it is invoked by lawyers in arguing over the
culpability of criminal defendants and by parents seeking school
services for their children. If, as Frances warns, the new volume is
an “absolute disaster,” it could cause a seismic shift in the way
mental health care is practiced in this country. It could cause the
APA to lose its franchise on our psychic suffering, the naming rights
to our pain.
This is hardly the first time that defining mental illness has led to
rancor within the profession. It happened in 1993, when feminists
denounced Frances for considering the inclusion of “late luteal phase
dysphoric disorder” (formerly known as premenstrual syndrome) as a
possible diagnosis for DSM-IV. It happened in 1980, when
psychoanalysts objected to the removal of the word neurosis — their
bread and butter — from the DSM-III. It happened in 1973, when gay
psychiatrists, after years of loud protest, finally forced a reluctant
APA to acknowledge that homosexuality was not and never had been an
illness. Indeed, it’s been happening since at least 1922, when two
prominent psychiatrists warned that a planned change to the
nomenclature would be tantamount to declaring that “the whole world
is, or has been, insane.”
Some of this disputatiousness is the hazard of any professional
specialty. But when psychiatrists say, as they have during each of
these fights, that the success or failure of their efforts could sink
the whole profession, they aren’t just scoring rhetorical points. The
authority of any doctor depends on their ability to name a patient’s
suffering. For patients to accept a diagnosis, they must believe that
doctors know — in the same way that physicists know about gravity or
biologists about mitosis — that their disease exists and that they
have it. But this kind of certainty has eluded psychiatry, and every
fight over nomenclature threatens to undermine the legitimacy of the
profession by revealing its dirty secret: that for all their confident
pronouncements, psychiatrists can’t rigorously differentiate illness
from everyday suffering. This is why, as one psychiatrist wrote after
the APA voted homosexuality out of the DSM, “there is a terrible sense
of shame among psychiatrists, always wanting to show that our
diagnoses are as good as the scientific ones used in real medicine.”
Since 1980, when the DSM-III was published, psychiatrists have tried
to solve this problem by using what is called descriptive diagnosis: a
checklist approach, whereby illnesses are defined wholly by the
symptoms patients present. The main virtue of descriptive psychiatry
is that it doesn’t rely on unprovable notions about the nature and
causes of mental illness, as the Freudian theories behind all those
“neuroses” had done. Two doctors who observe a patient carefully and
consult the DSM’s criteria lists usually won’t disagree on the
diagnosis — something that was embarrassingly common before 1980. But
descriptive psychiatry also has a major problem: Its diagnoses are
nothing more than groupings of symptoms. If, during a two-week period,
you have five of the nine symptoms of depression listed in the DSM,
then you have “major depression,” no matter your circumstances or your
own perception of your troubles. “No one should be proud that we have
a descriptive system,” Frances tells me. “The fact that we do only
reveals our limitations.” Instead of curing the profession’s own
malady, descriptive psychiatry has just covered it up.
The DSM-5 battle comes at a time when psychiatry’s authority seems
more tenuous than ever. In terms of both research dollars and public
attention, molecular biology — neuroscience and genetics — has come
to dominate inquiries into what makes us tick. And indeed, a few
tantalizing results from these disciplines have cast serious doubt on
long-held psychiatric ideas. Take schizophrenia and bipolar disorder:
For more than a century, those two illnesses have occupied separate
branches of the psychiatric taxonomy. But research suggests that the
same genetic factors predispose people to both illnesses, a discovery
that casts doubt on whether this fundamental division exists in nature
or only in the minds of psychiatrists. Other results suggest new
diagnostic criteria for diseases: Depressed patients, for example,
tend to have cell loss in the hippocampal regions, areas normally rich
in serotonin. Certain mental illnesses are alleviated by brain
therapies, such as transcranial magnetic stimulation, even as the
reasons why are not entirely understood.
Some mental health researchers are convinced that the DSM might soon
be completely revolutionized or even rendered obsolete. In recent
years, the National Institute of Mental Health has launched an effort
to transform psychiatry into what its director, Thomas Insel, calls
clinical neuroscience. This project will focus on observable ways that
brain circuitry affects the functional aspects of mental illness —
symptoms, such as anger or anxiety or disordered thinking, that figure
in our current diagnoses. The institute says it’s “agnostic” on the
subject of whether, or how, this process would create new definitions
of illnesses, but it seems poised to abandon the reigning DSM
approach. “Our resources are more likely to be invested in a program
to transform diagnosis by 2020,” Insel says, “rather than modifying
the current paradigm.”
Although the APA doesn’t disagree that a revolution might be on the
horizon, the organization doesn’t feel it can wait until 2020, or
beyond, to revise the DSM-IV. Its categories line up poorly with the
ways people actually suffer, leading to high rates of patients with
multiple diagnoses. Neither does the manual help therapists draw on a
body of knowledge, developed largely since DSM-IV, about how to match
treatments to patients based on the specific features of their
disorder. The profession cannot afford to wait for the science to
catch up to its needs. Which means that the stakes are higher, the
current crisis deeper, and the potential damage to psychiatry greater
than ever before.
Allen Frances’ revolt against the DSM-5 was spurred by another
unlikely revolutionary: Robert Spitzer, lead editor of the DSM-III and
a man believed by many to have saved the profession by spearheading
the shift to descriptive psychiatry. As the DSM-5 task force began its
work, Spitzer was “dumbfounded” when Darrel Regier, the APA’s director
of research and vice chair of the task force, refused his request to
see the minutes of its meetings. Soon thereafter, he was appalled, he
says, to discover that the APA had required psychiatrists involved
with the revision to sign a paper promising they would never talk
about what they were doing, except when necessary for their jobs. “The
intent seemed to be not to let anyone know what the hell was going
on,” Spitzer says.
In July 2008, Spitzer wrote a letter to Psychiatric News, an APA
newsletter, complaining that the secrecy was at odds with scientific
process, which “benefits from the very exchange of information that is
prohibited by the confidentiality agreement.” He asked Frances to sign
onto his letter, but Frances declined; a decade into his retirement
from Duke University Medical School, he had mostly stayed on the
sidelines since planning for the DSM-5 began in 1999, and he intended
to keep it that way. “I told him I completely agreed that this was a
disastrous way for DSM-5 to start, but I didn’t want to get involved
at all. I wished him luck and went back to the beach.”
But that was before Frances found out about a new illness proposed for
the DSM-5. In May 2009, during a party at the APA’s annual convention
in San Francisco, he struck up a conversation with Will Carpenter, a
psychiatrist at the University of Maryland. Carpenter is chair of the
Psychotic Disorders work group, one of 13 DSM-5 panels that have been
holding meetings since 2008 to consider revisions. These panels, each
comprising 10 or so psychiatrists and other mental health
professionals, report to the supervising task force, which consists of
the work-group chairs and a dozen other experts. The task force will
turn the work groups’ proposals into a rough draft to be field-tested,
revised, and then ratified — first by the APA’s trustees and then by
its 39,000 members.
At the party, Frances and Carpenter began to talk about “psychosis
risk syndrome,” a diagnosis that Carpenter’s group was considering for
the new edition. It would apply mostly to adolescents who occasionally
have jumbled thoughts, hear voices, or experience delusions. Since
these kids never fully lose contact with reality, they don’t qualify
for any of the existing psychotic disorders. But “throughout medicine,
there’s a presumption that early identification and intervention is
better than late,” Carpenter says, citing the monitoring of
cholesterol as an example. If adolescents on the brink of psychosis
can be treated before a full-blown psychosis develops, he adds, “it
could make a huge difference in their life story.”
This new disease reminded Frances of one of his keenest regrets about
the DSM-IV: its role, as he perceives it, in the epidemic of bipolar
diagnoses in children over the past decade. Shortly after the book
came out, doctors began to declare children bipolar even if they had
never had a manic episode and were too young to have shown the pattern
of mood change associated with the disease. Within a dozen years,
bipolar diagnoses among children had increased 40-fold. Many of these
kids were put on antipsychotic drugs, whose effects on the developing
brain are poorly understood but which are known to cause obesity and
diabetes. In 2007, a series of investigative reports revealed that an
influential advocate for diagnosing bipolar disorder in kids, the
Harvard psychiatrist Joseph Biederman, failed to disclose money he’d
received from Johnson & Johnson, makers of the bipolar drug Risperdal,
or risperidone. (The New York Times reported that Biederman told the
company his proposed trial of Risperdal in young children “will
support the safety and effectiveness of risperidone in this age
group.”) Frances believes this bipolar “fad” would not have occurred
had the DSM-IV committee not rejected a move to limit the diagnosis to
adults.
Frances found psychosis risk syndrome particularly troubling in light
of research suggesting that only about a quarter of its sufferers
would go on to develop full-blown psychoses. He worried that those
numbers would not stop drug companies from seizing on the new
diagnosis and sparking a new treatment fad — a danger that Frances
thought Carpenter was grievously underestimating. He already regretted
having remained silent when, in the 1980s, he watched the
pharmaceutical industry insinuate itself into the APA’s training
programs. (Annual drug company contributions to those programs reached
as much as $3 million before the organization decided, in 2008, to
phase out industry-supported education.) Frances didn’t want to be “a
crusader for the world,” he says. But the idea of more “kids getting
unneeded antipsychotics that would make them gain 12 pounds in 12
weeks hit me in the gut. It was uniquely my job and my duty to protect
them. If not me to correct it, who? I was stuck without an excuse to
convince myself.”
At the party, he found Bob Spitzer’s wife and asked her to tell her
husband (who had been prevented from traveling due to illness) that he
was going to join him in protesting the DSM-5.
Throughout 2009, Spitzer and Frances carried out their assault. That
June, Frances published a broadside on the website of Psychiatric
Times, an independent industry newsletter. Among the numerous alarms
the piece sounded, Frances warned that the new DSM, with its emphasis
on early intervention, would cause a “wholesale imperial
medicalization of normality” and “a bonanza for the pharmaceutical
industry,” for which patients would pay the “high price [of] adverse
effects, dollars, and stigma.” Two weeks later, the two men wrote a
letter to the APA’s trustees, urging them to consider forming an
oversight committee and postponing publication, in order to avoid an
“embarrassing DSM-5.” Such a committee was convened, and it did
recommend a delay, because — as its chair, a former APA president,
later put it — “the revision process hadn’t begun to coalesce as much
as it should have.” In December 2009, the APA announced a one-year
postponement, pushing publication back to 2013. (The organization
insists that Frances “did not have an impact” on the rescheduling of
the revision.)
James Scully, medical director of the APA, fills the big leather chair
in his office overlooking the Potomac River and the government
buildings beyond. He’s a large, ruddy-faced man with a shock of white
hair, and when he leans forward, his monogrammed cuffs perched on his
knees, to deliver his assessment of Frances, even though it’s only two
words — “he’s wrong” — you can hear his rising gorge and the sense
of betrayal that seems to be swelling behind it.
Of all the things that Frances is wrong about — and there are many,
Scully says, including his position on psychosis risk syndrome — the
confidentiality agreement seems to be the one that really galls. First
of all, it’s simply an intellectual property agreement “about who owns
the product.” Second, he insists, this is the most open and
transparent DSM revision ever, certainly more open than the process
that produced Spitzer’s and Frances’ manuals, which were written in
the pre-Internet era, before it was possible to field, as the task
force has, 8,000 online comments on the proposed changes.
The agreement may well be mere intellectual property boilerplate. But,
as I explain to Scully and later to APA research chief Darrel Regier,
that hasn’t reassured all the psychiatrists who’ve had to sign it.
They fret privately that the DSM-5 will create “monumental screwups”
that will turn the field into a “laughingstock.” They accuse the task
force of “not knowing where they’re going” and of “not having managed
this right from the very beginning.” They worry that the “slipshod
nature of the whole process” will lead to a “crappy product” that
alienates clinicians even as it makes psychiatry “look capricious and
silly.” None of them, however, are willing to go on record, for fear
— unfounded or not — of “retaliation” and “reprisal.”
Regier wants to know who said these things.
Not all the dissidents are insisting on anonymity. E. Jane Costello,
codirector of the Center for Developmental Epidemiology at Duke
Medical School, says she doesn’t mind going on record because she’s
“too small a fish” for them to bother with. Costello was one of two
psychiatrists who resigned from the Childhood Disorders work group in
spring 2009. In her resignation letter, which she subsequently made
public, Costello excoriated the DSM committee for refusing to wait for
the results of longitudinal studies she was planning and for failing
to underwrite adequate research of its own. The proposed revisions,
she wrote, “seem to have little basis in new scientific findings or
organized clinical or epidemiological studies.” (In a response, the
APA cited “several billions of dollars” already spent over the past 40
years on research the revision is drawing upon.)
To critics, the greatest liability of the DSM-5 process is precisely
this disconnect between its ambition on one hand and the current state
of the science on the other. Of particular concern is a proposal to
institute “dimensional assessment” as part of all diagnostic
evaluations. In this approach, clinicians would use standardized,
diagnostic-specific tests to assign a severity rating to each
patient’s illness. Regier hopes that these ratings, tallied against
data about the course and outcome of illnesses, will eventually lead
to psychiatry’s holy grail: “statistically valid cutpoints between
normal and pathological.” Able to reliably rate the clinical
significance of a disorder, doctors would finally have a scientific
way to separate the sick from the merely suffering.
No one, not even Frances, thinks it’s a bad idea to augment the
current binary approach to diagnosis, in which you either have the
requisite symptoms or you don’t, with a method for quantifying
gradations in illness. Dimensional assessment could provide what
Frances calls a “governor” on absurdly high rates of diagnosis — by
DSM criteria, epidemiologists have noted, a staggering 30 percent of
Americans are mentally ill in any given year — and thereby solve both
a public health problem and a public relations problem.
But Michael First, a Columbia University psychiatrist who headed up
the DSM-5’s Prelude Project to solicit feedback before the revision,
believes that implementing dimensional assessment right now is a
tremendous mistake. The tests, he says, are nowhere near ready for
use; while some of them have a long track record, “it seems that many
of them were made up by the work groups” without any real-world
validation. Bad tests could be disastrous not just for the profession,
which would erect its diagnostic regime on a shaky foundation, but
also for patients: If the tests have been sanctioned in the DSM,
insurance companies could use them to cut off coverage for patients
deemed not sick enough. “If they really want to do dimensional
assessment,” First says, “they should wait the five or 10 years it
would take for the scales to be ready.”
Regier won’t say how many of the tests are usable yet. “I don’t think
it will be useful to get into this level of detail,” he emails. He
acknowledges that dimensional assessment is still evolving, and he
says the DSM-5 field trials — studies in which doctors will test the
rough draft of the manual with patients — will help refine the tests.
But the field trials, too, are bumping up against formidable
deadlines. Although trials were scheduled to begin in May 2010, as of
October only a pilot study was actually under way — and protocols for
the rest of the trials couldn’t be finalized until that study was
completed. Meanwhile, Regier has pegged May 2013 as a drop-dead date
for publication of the new manual, which means that two sets of field
trials and revisions must be completed by September 2012.
The time crunch only gives critics more fuel. Frances, on hearing of
the trials’ delay, BlackBerried out a communiqué about the task
force’s “Keystone Kops” missteps — the “Rube Goldberg design,” the
“numerous measures signifying nothing,” the “criteria sets that are
unusable because so poorly written.” All of which, he wrote, will lead
to “a mad dash to dreck at the end.”
When the rough draft of the DSM-5 was released, in February 2010, the
diagnosis that had galvanized Frances — psychosis risk syndrome —
wasn’t included. But another new proposed illness had taken its place:
“attenuated psychotic symptoms syndrome,” which has essentially the
same symptoms but with a name that no longer implies the patient will
eventually develop a psychosis. In principle, Carpenter says, that
change “eliminates the false-positive problem.” This is not as cynical
as it might sound: Carpenter points out that a kid having even
occasional hallucinations, especially one distressed enough to land in
a psychiatrist’s office, is probably not entirely well, even if he
doesn’t end up psychotic. Currently, a doctor confronted with such a
patient has to resort to a diagnosis that doesn’t quite fit, often an
anxiety or mood disorder.
But attenuated psychotic symptoms syndrome still creates a mental
illness where there previously was none, giving drugmakers a new
target for their hard sell and doctors, most of whom see it as part of
their job to write prescriptions, more reason to medicate. Even
Carpenter worries about this. “I wouldn’t bet a lot of money that
clinicians will hold off on antipsychotics until there’s evidence of
more severe symptoms,” he says. Nonetheless, he adds, “a diagnostic
manual shouldn’t be organized to try to adjust to society’s problems.”
His implication is that the rest of medicine, in all its scientific
rigor, doesn’t work that way. But in fact, medicine makes adjustments
all the time. As obesity has become more of a social problem, for
instance, doctors have created a new disease called metabolic
syndrome, and they’re still arguing over the checklist of its
definition: the blood pressure required for diagnosis, for example,
and whether waist circumference should be a criterion. As Darrel
Regier points out, diabetes is defined by a blood-glucose threshold,
one that has changed over time. Whether physical or mental, a disease
is really a statistical construct, a group of symptoms that afflicts a
group of people similarly. We may think our doctors are like Gregory
House, relentlessly stalking the biochemical culprits of our
suffering, but in real medicine they are more like Darrel Regier,
trying to discern the patterns in our distress and quantify them.
The fact that diseases can be invented (or, as with homosexuality,
uninvented) and their criteria tweaked in response to social
conditions is exactly what worries critics like Frances about some of
the disorders proposed for the DSM-5 — not only attenuated psychotic
symptoms syndrome but also binge eating disorder, temper dysregulation
disorder, and other “sub-threshold” diagnoses. To harness the power of
medicine in service of kids with hallucinations, or compulsive
overeaters, or 8-year-olds who throw frequent tantrums, is to command
attention and resources for suffering that is undeniable. But it is
also to increase psychiatry’s intrusion into everyday life, even as it
gives us tidy names for our eternally messy problems.
I recently asked a former president of the APA how he used the DSM in
his daily work. He told me his secretary had just asked him for a
diagnosis on a patient he’d been seeing for a couple of months so that
she could bill the insurance company. “I hadn’t really formulated it,”
he told me. He consulted the DSM-IV and concluded that the patient had
obsessive-compulsive disorder.
“Did it change the way you treated her?” I asked, noting that he’d
worked with her for quite a while without naming what she had.
“No.”
“So what would you say was the value of the diagnosis?”
“I got paid.”
As scientific understanding of the brain advances, the APA has found
itself caught between paradigms, forced to revise a manual that
everyone agrees needs to be fixed but with no obvious way forward.
Regier says he’s hopeful that “full understanding of the underlying
pathophysiology of mental disorders” will someday establish an
“absolute threshold between normality and psychopathology.”
Realistically, though, a new manual based entirely on neuroscience —
with biomarkers for every diagnosis, grave or mild — seems decades
away, and perhaps impossible to achieve at all. To account for mental
suffering entirely through neuroscience is probably tantamount to
explaining the brain in toto, a task to which our scientific tools may
never be matched. As Frances points out, a complete elucidation of the
complexities of the brain has so far proven to be an “ever-receding
target.”
What the battle over DSM-5 should make clear to all of us —
professional and layman alike — is that psychiatric diagnosis will
probably always be laden with uncertainty, that the labels doctors
give us for our suffering will forever be at least as much the product
of negotiations around a conference table as investigations at a lab
bench. Regier and Scully are more than willing to acknowledge this. As
Scully puts it, “The DSM will always be provisional; that’s the best
we can do.” Regier, for his part, says, “The DSM is not biblical. It’s
not on stone tablets.” The real problem is that insurers, juries, and
(yes) patients aren’t ready to accept this fact. Nor are psychiatrists
ready to lose the authority they derive from seeming to possess
scientific certainty about the diseases they treat. After all, the DSM
didn’t save the profession, and become a best seller in the bargain,
by claiming to be only provisional.
It’s a problem that bothers Frances, and it even makes him wonder
about the wisdom of his crusade against the DSM-5. Diagnosis, he says,
is “part of the magic,” part of the power to heal patients — and to
convince them to endure the difficulties of treatment. The sun is up
now, and Frances is working on his first Diet Coke of the day. “You
know those medieval maps?” he says. “In the places where they didn’t
know what was going on, they wrote ‘Dragons live here.’”
He went on: “We have a dragon’s world here. But you wouldn’t want to
be without that map.”
