Jeffrey Swanson, a professor in the Duke School of Medicine’s department of psychiatry and behavioral sciences, offers an analogy for perceptions of mental health. “There’s this continuum between night and day, and there’s this moment, dusk, where you can’t really tell the difference between night and day.” Dusk suggests that there is no absolute of either; that it’s a question of degree.
Likewise, Swanson says, we all fall along a spectrum of mental health: no one eternally “healthy” and very few irreparably “sick.” More likely, we’re approaching or just beyond dusk.
He points out that while we have “psychological traits and problems in degree,” that’s not to suggest there is no categorical difference between, for example, having schizophrenia or not. There is, of course, a distinction. But even in that example, “a person with schizophrenia is not just that. They are a lot of other things, too, as every human individual is.”
The impetus for Swanson’s observations was the release last May of the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), which has generated a lot of press around the assertion that the tendency today in psychology is to diagnose too quickly. A number of conditions not previously considered mentalhealth disorders were added to the DSM-5, and some in the field fear those additions will lead to over-diagnosis and thus over-treatment. Among the disorders that have been added are grief (major depressive disorder) and temper tantrums (disruptive mood dysregulation disorder).
Some experts contend that broader diagnostic parameters allow more people to receive the help they need, while others are concerned about the potential long-term effects of receiving a diagnosis for something that seems expected of everyday life and that eventually will pass. Labels can be indelible, they argue.
Swanson sees validity to both sides of the argument. But he’s among those in the mental-health field who would like to see the national conversation about mental-health care expanded to address the fact that millions of people in need are seldom if ever afforded the opportunity of seeing a mental-health professional. After all, the threat of over-diagnosis is confined to those who find help. With those who don’t, a public-health crisis ensues, as millions, at various stages along that spectrum, go without care, many of them languishing in emergency rooms, jails, and prisons, untreated and out of sight.
Our collective conversation about mental health seems to lurch from one crisis to the next—from Blacksburg to Newtown—often with the misconception that those living with mental illness are generally more violent and must somehow be contained, and with little offered by way of practical solutions.
Swanson believes the release of DSM-5 could serve as an opportunity for broader discussion of the reality of mental health among us, including the critical need for better treatments and more responsive systems of care. How much daylight is there, really, he asks, between that scary guy who mumbles as he meanders down your city’s streets and your next-door neighbor, with refills on his Prozac prescription?
That mental-health spectrum, he says, is defined by factors within the brain and out in the world. Proper care often determines where we land. DSM-5 offers an opportunity to consider that spectrum and how we treat, or don’t, mental illness.
THE DIAGNOSTIC and Statistical Manual of Mental Disorders is the de facto standard for making a mental-health diagnosis. It serves as a general guideline, says Mehul Mankad ’02, an assistant professor in the department of psychiatry and behavioral sciences. Mankad served as a trainer for the DSM-5, educating mental-health-care professionals across North Carolina about changes from the previous edition. The American Psychiatric Association, comprising some 33,000 psychiatric physicians, publishes the manual.
“The DSM system gives all health-care providers a common language,” he says. “If we can name the thing that’s in front of us, we can start to do something about it.”
The order that the DSM system has brought to the mental-health profession was much needed. Allen Frances, professor emeritus and former chair of the department of psychiatry and behavioral sciences, has written that prior to the publication of DSM-III, in 1980, psychiatric diagnosis was a “professional embarrassment and cultural backwater,” with the first two editions serving largely as collections of statistics.
“Two clinicians seeing the same patient couldn’t agree on a diagnosis,” he says. “If you can’t agree on the diagnosis, you can’t plan a treatment and you can’t do research.”
DSM-III was also hugely popular with the general public. “People are always interested in people,” Frances says. “Part of human nature is to be interested in what makes us tick. It’s a huge survival value to be able to understand and predict what other people around you will be doing, and at different points in history there are different ways of looking at people that are the most popular.”
Before DSM-III, he says, psychoanalysis was the “chic way of understanding human behavior. If you went to a cocktail party on Central Park West in New York, people would be talking about their dreams and what their analyst said. DSM-III changed that almost overnight.” Psychoanalysis is based on techniques, popularized by Sigmund Freud, to bring to the surface childhood memories and unconscious drives, and, Frances says, psychology was an art form. With the publication of DSM-III, diagnoses, more empirically based—number of symptoms and their frequency, severity, and effects—were now at the center of the national discourse on psychiatry and psychology.
Frances chaired the task force that, in 1994, produced DSM-IV. He had been disturbed by what he terms the “diagnostic inflation” of DSM-III and strove to keep changes in the DSM-IV to a minimum. He and his colleagues were largely successful in that regard.
But meanwhile, he says, drug companies were beginning to realize that psychiatric drugs could be their “biggest cash cows,” as witnessed most spectacularly by the introduction of Prozac, in 1987. “The brilliance of Prozac,” he attests, “was that you could package the ill to sell the pill.” Depression, in effect, was the commodity. Drug companies were by then allowed to sell directly to the public, in print and on television and radio.
Frances is today the nation’s most vocal critic of DSM- 5, having written a book, Saving Normal: An Insider’s Revolt Against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life, in which he argues that additions to DSM-5 will contribute to an ongoing trend of over-diagnosis and the medicalization of expectable human distress. Some of those diagnoses, he says, are along the “fuzzy boundary” with everyday sadness and loss and should remain undiagnosed. Over-diagnosis, he argues, means over-treatment, which translates to overmedication.
“We now have more deaths in emergency rooms for overdoses of prescribed medicine that come from drug companies than street drugs that come from the cartels,” Frances says.
MANY OF Frances’ colleagues share his concerns regarding over-diagnosis in general without agreeing that the additions to DSM-5 will have profound consequences.
“I’ve thought that a lot of the controversy is a little bit overwrought,” says Marvin Swartz ’84, head of the School of Medicine’s social and community psychiatry division. He doesn’t believe physicians and psychiatrists will hasten to prescribe medications for the new diagnoses, suggesting that those diagnoses that fall along Frances’ “fuzzy boundary” will be addressed with caution.
Controversy has followed the removal of the so-called bereavement exclusion. DSM-IV stipulated that a person who has lost a loved one shouldn’t be diagnosed with major depressive disorder within eight weeks of the loss. DSM-5 removes that exclusion.
Dan Blazer HS ’75, the J.P. Gibbons Professor of psychiatry and behavioral sciences, says that because of the exclusion, it seems insurance companies weren’t reimbursing people for seeking mental-health care during those eight weeks. He says that individuals who have experienced a devastating loss may well meet the criteria for major depression and “very well may respond to both medication and psychotherapy, and therefore you can make a case that, yes, they deserve the diagnosis and deserve the treatment for it.”
Blazer notes that doctors don’t just make decisions from a book; they’re balancing clinical judgment with the recognition that people can suffer from depression in the midst of bereavement. What must be factored in, though, is that now that person is carrying a diagnosis of a psychiatric disorder.
Another addition that’s been challenged by mentalhealth professionals is mild neurocognitive disorder, which includes what could be early signs of dementia. “People are coming to doctors with real complaints, and we need to recognize that they have a disorder even if you can’t pin it down,” says Blazer, who served as chair of the DSM-5 neurocognitive workgroup and was also a member of both the DSM-5 task force and the scientific-review committee.
On the other hand, he adds, “let’s say, for example, these individuals are trying to get into a continuing-care community; they carry a diagnosis of mild cognitive impairment, and therefore the continuing-care community says, ‘Well, we don’t want to take the chance that you develop dementia and use up too many of our resources, and so we don’t want to admit you.’”
Then there’s the fear that new criteria for attention-deficit hyperactivity disorder, ADHD, will lead to even more diagnoses of that condition. Keith Conners, a professor emeritus of medical psychology and a pioneer in ADHD research, recently told The New York Times that he was alarmed by the proliferation of ADHD diagnoses, citing Centers for Disease Control and Prevention data indicating that 15 percent of high-school-age children are diagnosed with the disorder and that 3.5 million children were receiving medication for ADHD, up from 600,000 in 1990.
“The numbers make it look like an epidemic,” Conners said. “Well, it’s not. It’s preposterous. This is a concoction to justify the giving out of medication at unprecedented and unjustifiable levels.” “I think we’re living in what I sometimes call the Rumplestiltskin effect,” Blazer says, “and that is we really want to put a name to everything.” In the fairy tale, the queen learns Rumplestiltskin’s name, and he thereby loses his power over her.
“When you go see a doctor, you want that doctor to be able to tell you, ‘This is what’s wrong with you,’ ” Blazer says. “‘The name of your condition is X, and we can do Y for X.’ That’s just inherent in the way we practice medicine today. It’s very difficult to tell people, ‘I understand you’re suffering; I understand the difficulties you’re going through. You’re under a lot of stress at work. But there’s really no diagnosis for this.’
“People don’t want to hear that…. People want quick solutions.”
BUT WHEN WE TALK about the risks of overdiagnosis, we’re talking, of course, about those fortunate enough to see a mentalhealth professional. The foremost publichealth issue, Swartz says, is that perhaps half of all people with serious mental illness are receiving no treatment at all.
Why do so many go untreated? There are a number of reasons, some that can be traced back decades, others of more recent origin. The Community Mental Health Act, passed in 1963, called for the deinstitutionalization of those with mental illness, declaring that we should minimize the “warehousing” of the mentally ill, instead providing them with services within their own communities—a laudable goal. Except that those community- based services were never adequately funded. Shortly before leaving office in 1981, Jimmy Carter signed the Mental Health Systems Act, funding a federal community mental-health centers program, but Ronald Reagan reversed the action.
Insurance discrimination, Swartz says, has played a major role in limiting access to mental-health services, with prohibitive copays and deductibles and utilization-review procedures that make it difficult for those with mental illness to access their benefits.
Another factor has been a shortage in affordable housing. Those living with mental illness are more susceptible to poverty and thus homelessness. And homelessness, Swartz says, leads to victimization and arrest. Jails and prisons have become de facto mental-health institutions. The Los Angeles County jail holds more individuals with a diagnosed mental illness than any mental-health-care facility in the country and is ill-prepared for the challenge.
A study published in 2010 by the National Sheriffs’ Association and the Treatment Advocacy Center reported 8,617 inmates in North Carolina’s jails and prisons with a serious mental illness (schizophrenia, bipolar disorder, or major depression) compared to 2,443 patients in all state and private psychiatric hospitals and psychiatric units in general hospitals.
First stop, though, for the uninsured is generally emergency rooms, which become overwhelmed with people who have psychiatric conditions and nowhere else to go. The average wait in an emergency room in North Carolina for a bed in a state psychiatric facility is now more than three days.
“We need to make a more substantial societal commitment to providing treatment to people,” Swartz says, “even if they’re uninsured.”
“The paradox of the story is that we are terribly overtreating people who don’t need it, to their individual harm because of all the side effects and stigma, and to society’s harm because of this terrific cost,” says Frances. “We should be spending this money on things that count,” such as treating the severely mentally ill, outpatient treatment within communities, affordable housing, outreach, and education. “We’re allocating our resources in the wrong way, and at the same time we’re shamefully neglecting people who most need help.”
GETTING A DIAGNOSIS when it’s an accurate one can be a wonderful moment,” Frances says, “because it helps explain what was previously unexplainable; it helps to reduce a sense of being uniquely damned, and it gives hope that your problems can be dealt with and understood.
“But if the diagnosis is inaccurate—and sometimes even if it’s accurate—it can carry stigma, people looking at you in a different way. You look at yourself in a different way. It reduces the sense of your possibilities and responsibilities.”
It’s easy to give and receive a diagnosis, he says; it’s very hard to get rid of one.
Frances says there is today a “greater sanity and caution about diagnosis and treatment” throughout medicine and surgery, but it hasn’t happened yet. “I think psychiatry will fall into line.” He believes we should have a more diligently monitored diagnostic system with warnings about diagnoses that are being overused. “New diagnoses can be more dangerous than new drugs.” More voices should be heard in shaping the next DSM.
As patients and consumers, we shouldn’t want easy answers, Frances says; the risk is too great. Ask questions and expect common- sense answers. And embrace the uncertainty: Not everything that unsettles can, or should, be diagnosed.
There’s a term that advocates for people with physical disabilities sometimes use to describe those who don’t, presently, have a disability: “temporarily abled.” The foundations on which we stand are tenuous, impermanent; collectively, we bolster them. Think in terms of a common humanity, urges Swanson, the psychiatry and behavioral sciences professor. “There are variations—variations in behavior and variations in mood and thought. There's a spectrum."