A look at the new psychiatric guidelines that are pitting doctors against doctors
by Anne Kingston on Tuesday, March 19, 2013 8:30am
Every parent of a preteen has been there: on the receiving end of sullen responses, bursts of frustration or anger, even public tantrums that summon the fear that Children’s Aid is on its way. Come late May, with the publication of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), however, such sustained cranky behaviour could put your child at risk of a diagnosis of “disruptive mood dysregulation disorder.” This newly minted condition will afflict children between 6 and 12 who exhibit persistent irritability and “frequent” outbursts, defined as three or more times a week for more than a year. Its original name, “temper dysregulation disorder with dysphoria,” was nixed after it garnered criticism it pathologized “temper tantrums,” a normal childhood occurrence. Others argue that even with the name change the new definition and diagnosis could do just that.
“Disruptive mood dysregulation disorder” isn’t the only new condition under scrutiny in the reference manual owned and produced by the American Psychiatric Association (APA)—and lauded as psychiatry’s bible. Even though the final version of DSM-5 remains under embargo, its message is being decried in some quarters as blasphemous. Its various public drafts, the third published last year, have stoked international outrage—and a flurry of op-ed columns, studies, blogs and petitions. In October 2011, for instance, the Society for Humanistic Psychology drafted an open letter to the DSM task force that morphed into an online petition signed by more than 14,000 mental health professionals and 50 organizations, including the American Counseling Association and the British Psychology Society.
Of fundamental concern is a loosening and broadening of categories to the point that everyone potentially stands on the brink of some mental-disorder diagnosis, or sits on some spectrum—a phenomenon the American psychologist Frank Farley has called “the sickening of society.” One change summoning criticism is DSM-5’s reframing of grief, that inescapable fact of life, by removing the “bereavement exclusion” for people who’ve experienced loss. Previously, anyone despairing the death of a loved one wasn’t considered a candidate for “major depression” unless their despondency persisted for more than two months or was accompanied by severe functional impairment, thoughts of suicide or psychotic symptoms. No longer.
Other updates to DSM-5, the ﬁrst full revision in nearly two decades, have raised red flags. Forgetting where you put your keys or other memory lapses, a fact of aging formerly shrugged off as “a senior moment,” could portend “minor neurocognitive disorder,” a shift destined to also stoke anxiety. Anyone who overeats once a week for three weeks could have a “binge-eating disorder.” Women not turned on sexually by their partners or particularly interested in sex are candidates for “female sexual interest/arousal disorder.” Nail-biters join the ranks of the obsessive-compulsive, alongside those with other “pathological grooming habits” such as “hair-pulling” and “skin-picking.”
The fuzzy boundary between “generalized anxiety disorder” (GAD) and everyday worries has also been blurred. As Allan V. Horowitz, a sociology professor at Rutgers University, points out, changes in this category are potentially the most important because they affect the largest number of people. Under the new “somatic symptom disorder” (SSD), for instance, people who express any anxiety about physical symptoms could also be saddled with a mental illness diagnosis, which could thwart their attempts to have their physical issues taken seriously. To meet the definition one only needs to report a single bodily symptom that’s distressing and/or disruptive to daily life and have just one of the following three reactions for at least six months: “ ‘disproportionate’ thoughts about the seriousness of their symptom(s); a high level of anxiety about their health; devoting excessive time and energy to symptoms or health concerns.”
DSM-5 represents a step back in mental health care, says psychologist Peter Kinderman, head of the Institute of Psychology, Health and Society at the University of Liverpool. Kinderman, who is organizing an international letter of objection to DSM-5 to be posted on dsm5response.org, which launches March 20, believes many new DSM classifications, among them “female orgasmic disorder,” defy common sense. “If you’re not enjoying sex, it’s a problem, but it’s crazy to say it’s a mental illness,” he says. He also questions the new criteria for alcohol and drug “substance-use disorders.” “According to it, 40 to 50 per cent of college students should be considered mentally ill.” Such diagnoses interfere with the human helping response, says Kinderman. “When women get raped, it’s traumatic; when soldiers go to war, they come back emotionally affected. We don’t need the new label, ‘post-traumatic stress disorder,’ ” he says. “We should identify risk, identify problems, identify the threats people have and then we need to help them.”
DSM-5’s most vocal critic is psychiatrist Allen Frances, who chaired the DSM-IV task force. Frances, professor emeritus at Duke University, calls the approval of the DSM-5 in December 2012 “the saddest moment in my 45-year career of studying, practising and teaching psychiatry.” In an interview with Maclean’s, he slammed the DSM-5’s methodology as lacking rigour and being “scientifically unsound.” Frances cautions clinicians, media and the general public to “be skeptical” and not to “follow DSM-5 blindly down a road likely to lead to massive over-diagnosis and harmful overmedication.” His concern is two-pronged: healthy people will be over-treated; undue focus on them will mean people who need psychiatric help won’t get it. He expects that “somatic symptom disorder” will greatly increase the rates of diagnosis of mental disorders in the medically ill—whether they have established diseases like diabetes or cancer or unexplained symptoms. “Anyone with the slightest bit of common sense knows this is stupid,” he says, adding that people in the DSM world don’t get it. “They have remarkable blinders to common sense.”
People in the DSM world disagree. “We sought to be conservative in our approach to revising DSM-5,” DSM-5 task force chair David Kupfer wrote in an email to Maclean’s. “Our work was aimed at more accurately defining mental disorders that have a real impact on people’s lives, not at expanding the scope of psychiatry or increasing the number of individuals diagnosed.” Kupfer says response from the psychiatric community is “largely supportive.” But he welcomes criticism: “It’s an inherent part of any robust scientific discussion,” he says. That’s good, because this discussion—one that delves into what it is to be human— is just beginning. Classification of mental illness in the U.S. dates to 1917, when a committee on statistics, a precursor organization to the American Psychiatric Association, teamed with the National Commission on Mental Hygiene to develop the Statistical Manual for the Use of Institutions for the Insane. It boasted 22 diagnoses. The first DSM was published in 1952 and has been updated to reflect new research in genetics, epidemiology, risk and imaging. The 886-page DSM-IV, published in 1994, lists 297 “disorders.” DSM-5 clocks in at 1,000 pages in its $199 hardcover version and includes approximately the same number of diagnoses as DSM-IV, says Kupfer: “This goes against the trend in other areas of medicine, which typically increase the number of diagnoses.”
DSM is not the only accepted measure in classifying the signs and symptoms of mental disorders. The World Health Organization’s “International Classification of Diseases” (ICD), a diagnostic tool used in epidemiology, health management and clinical research, also provides metrics. But DSM is the benchmark driving mental illness treatment and research, and the reference for insurance companies. “The DSM is a big deal,” says Kinderman. “Even though it’s an American document, it influences research across the world.” Jose Silveira, chief of psychiatry at St. Joseph’s Health Centre in Toronto, says the DSM is integrated into the Canadian system: “We don’t sit with patients saying, ‘Does the DSM say this or not?’ But we use it because insurance companies request it; the government requests it; it’s used in disability claims; it’s used for tracking rates in the population.”
Its utility is in organizing symptoms only, Silveira says: “It’s purely diagnostic; it doesn’t reflect risks associated with conditions.” He believes DSM is not particularly useful for front-line primary care providers—the GPs, psychologists, social workers and family therapists who provide an estimated 80 per cent of mental health services. “Diagnosis can take a trained clinician hours,” he says.
Yet as witnessed with the explosion in use of Ritalin and antipsychotics after DSM-IV identified ADHD and bipolar disorder as bona fide conditions, a new disease diagnosis influences whether millions of patients are placed on drugs—often by primary care doctors with minimal training in psychiatric diagnosis. And this puts children particularly at risk, says psychologist Brent Robbins, president-elect of the Society for Humanistic Psychology and co-editor of Drugging Our Children. He cites one U.S. study that found 72 per cent of pediatricians prescribe psychotropics to children, though only eight per cent say they feel adequately trained to do so.
One group the DSM unequivocally has helped is psychiatrists themselves. The DSM-III, published in 1973, resuscitated the specialty at a time it was facing irrelevancy, says Frances, who contributed to that edition. “Studies showed a lack of agreement between psychiatrists in the U.S; it seemed as if they didn’t know what they were doing.” DSM-III was “a radical step forward in providing diagnostic criteria that had people working off the same page and, under ideal conditions, could result in agreement about diagnosis,” he says.
Its success had a downside. “It became too important in external ways—particularly with drug-company muscle pushing diagnosis to push pills,” the psychiatrist says. “It led to a diagnostic inflation and expanded the boundaries of psychiatry beyond its competence. As a result, it diverted attention from the core effort: taking care of people with real psychiatric illness.”
Frances’s experience on DSM-IV, which came under fire as well, taught him how new diagnoses can spread like wildfire. His task force believed they were being conservative, he says, in vetoing all but three of 94 suggestions for new disease diagnoses: Asperger’s, ADHD and bipolar II disorder. “We expected a three to four fold rise in Asperger’s diagnosis: we never dreamed it could go from less than one in 2,000 to one in 88 in the U.S. and one in 38 in Korea,” he says. Likewise, the diagnosis of childhood bipolar disorder increased fortyfold. “Anything that can be used in DSM will be misused,” he says.
While drug companies are not directly involved in the DSM process, “they’re on the sidelines licking their chops for sure,” Frances says. He’s quick to add that the DSM-5 task force adopted a better system of vetting for financial conflicts of interest than his did. Still 70 per cent of DSM-5 authors have declared ties to pharmaceutical manufacturers; in some categories, it’s 100 per cent. But Frances, author of Saving Normal: An Insider’s Revolt Against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life, sees “intellectual conflict of interest” as an even greater problem. “I know people involved and they are making absolutely dreadful suggestions that will be of enormous use to the pharmaceutical industry and they’re doing it with the purest of hearts,” he says. “Any time you give experts pure freedom they will expand the system to reflect their own interests. No one says, ‘My area has too much emphasis on it; we should be restricting diagnosis to fewer people.’ They worry about the missed patient. And they always overvalue their own research, their friends’ research.”
The DSM-5 process itself is a case study in human co-operation, conflict and dysfunction. More than a decade in the making, and involving 13 work groups and with more than 1,500 contributors from 39 countries, it has been riddled with revisions, delays and high drama. One goal was to better align the DSM to the World Health Organization’s ICD codes. Another was to remedy some of the unforeseen—and unfortunate—consequences of DSM-IV. “Disruptive mood dysregulation disorder,” for example, was intended to address concerns about potential over-diagnosis and over-treatment of bipolar disorder in children. Pediatric psychiatrist Terry Bennett, a professor at McMaster University, sees the change as constructive: “It’s a nice move away from labelling children with bipolar disorder; it doesn’t make claims to predicting that these kids will have bipolar when they grow up and could be helpful in minimizing undue medication.” She believes if the criteria are applied carefully, the diagnosis should capture only a very small group of kids who are severely impaired.
The elimination of the “bereaved exclusion,” another contentious topic, reflects new research, says Ron Pies, a clinical professor of psychiatry at Boston’s Tufts University who has studied the subject. Most bereaved people do not meet the full criteria for major depressive disorder and don’t need professional treatment, Pies says: “They need ‘TLC’ and what doctors throughout the ages have called ‘tincture of time.’ The relatively small subgroup of recently bereaved persons who meet full DSM-5 criteria for major depression disorder will now be able to receive appropriate professional care.” Pies is emphatic the reclassification “does not mean instant antidepressant prescription, no matter how often critics insist this will be the case.” The risk of overlooking a potentially lethal illness, with a four per cent completed suicide rate, is much greater than “over-calling” an episode of ordinary grief, he says.
At the outset, DSM-5 had an ambitious plan to reimagine diagnosis from the ground up, says Frances (a claim supported by others but refuted by Kupfer): “They wanted a paradigm shift in psychiatry.” But descriptive psychiatric diagnosis can’t support that, Frances says: “There can be no dramatic improvements in psychiatric diagnosis until we make a fundamental leap in our understanding of what causes mental disorders.”
As a result, observers report, the task force focused on a preventive-style of diagnosis that targeted milder conditions with higher rates in the community. Nipping potential problems in the bud is a long-standing medical mandate. But without cause or treatment, it can be problematic, says drug policy researcher Alan Cassels of the University of Victoria. Cassels sees DSM-5 continuing the medical trend of “pre-disease” diagnosis, citing “minor neurocognitive disorder” as an example: “What better way to get perfectly healthy people to start shuffling down the cattle ramp toward a good jolt of the yet-to-be-launched pre-dementia medicines that the drug industry will soon be zapping us with?”
Task force chair Kupfer, whose own career has been devoted to mood disorders, expresses confidence in DSM-5: “By utilizing the best experts and research, we have produced a manual that best represents the current science and will be most useful to clinicians and the patients they serve.”
Not all who participated in the process agree. Last year, Roel Verheul, a professor at the University of Amsterdam, and John Livesley, professor emeritus at the University of British Columbia, resigned from the DSM-5 Personality and Personality Disorders Work Group in protest. In a public email they explained they “considered the current proposal to be fundamentally flawed” with a “truly stunning disregard for evidence.” They called the proposed classifications “unnecessarily complex, incoherent, and inconsistent” and stated “the obvious complexity and incoherence seriously interfere with clinical utility.” They concluded: “The DSM 5 personality section is not readable, much less usable. It will be ignored by clinicians and will do grave harm to research.”
Lack of outside scrutiny has been a problem, says Robbins. The APA countered calls for an independent review claiming that “no outside organization has the capacity to replicate the range of expertise that DSM-5 has assembled over the past decade to review diagnostic criteria for mental disorders.” Robbins calls that arrogant and ludicrous: “There are hundreds of mental health organizations across the world that would gladly offer their services to review the DSM-5.”
How and why a society defines mental illness is a mutable cultural barometer reflecting current thinking, biases—and assigning stigma. DSM-I, for instance, listed homosexuality as a “sociopath personality disturbance”; DSM-II reclassified it as “sexual deviancy.” It was removed from DSM-III entirely amid political mobilization and protest. Psychiatric diagnoses have a history of reflecting cultural prejudices, says Silveira, who points to “drapetomania,” a purported mental illness described by American physician Samuel A. Cartwright in 1851. The condition, said to have afflicted black slaves, was characterized by a propensity to try to flee captivity. According to Cartwright, it could be almost entirely prevented by proper medical advice, strictly followed.
Mental illness diagnoses also frame mental health. The DSM illustrates how fluid those definitions can be: in DSM-IV, Asperger’s was given stand-alone status; DSM-5 returned it to “autism spectrum disorder.” Now, the reality-TV staple “hoarding” will become an official disorder, while “anxious depression,” “hypersexual disorder” and “parental alienation syndrome” failed to make the cut. The reference book has also introduced a slippery slope with the addition of a new “behavioural addictions” category, which currently only includes “pathological gambling”—though “Internet-use gaming disorder” and “caffeine-use disorder” are listed in section three (disorders needing further research).
Yet for all of the controversy, the DSM is not mandatory for mental health professionals, but rather one tool, says Frances. In fact, the American Psychological Association is gearing up to encourage training in the ICD, says Robbins. “There’s a sense among the higher-ups that the DSM system is a sinking ship. It’s losing its canonical status.” He sees one upside from the controversy: an opportunity to begin constructive conversations about the future of psychiatric diagnosis. He’s spearheading an international summit on diagnostic alternatives about to launch an open online public conversation. Silveira agrees: “Is there a lot of controversy around diagnosis? Absolutely. Should there be?
Absolutely. That is its greatest virtue. It provides opportunity for input from lay people, social workers, and brings us all to the table. We’re dealing with conditions where there is a profound degree of complexity and a profound degree of uncertainty.” He points out medicine is far from the pinnacle of understanding the human body: “We’re still embryonic.” Our understanding of the human brain is even more primitive. “The brain doesn’t reveal its secrets easily,” says Frances. “It’s the most complicated thing in the universe.” And there is no more compelling evidence of that than the DSM-5’s new definitions of what it is to be a healthy human—and the very human backlash it has received.