Paula Caplan misleads readers about DSM-5 in her 4/29/12 Washington Post op-ed.
(5/12/12) On April 29, 2012, The Washington Post Outlook section published an opinion piece by Paula Caplan that contained numerous inaccuracies and misleading or dubious claims. To ensure readers receive the facts, we have posted the full text of her op-ed below, along with our responses in blue to set the record straight.
Psychiatry’s bible, the DSM, is doing more harm than good
Washington Post, Caplan: About a year ago, a young mother called me, extremely distressed. She had become seriously sleep-deprived while working full-time and caring for her dying grandmother every night. When a crisis at her son’s day-care center forced her to scramble to find a new child-care arrangement, her heart started racing, prompting her to go to the emergency room.
After a quick assessment, the intake doctor declared that she had bipolar disorder, committed her to a psychiatric ward and started her on dangerous psychiatric medication. From my conversations with this woman, I’d say she was responding to severe exhaustion and alarm, not suffering from mental illness.
APA Response: Commitment to a psychiatric ward, which defines an involuntary hospitalization, is not a quick or simplistic action. It requires the approval of TWO physicians who agree that without this hospitalization, the patient would be a danger to himself/herself or to others. That threshold must continue to be met for the duration of the stay and must be approved by a judge. And, regardless of how a patient arrives in a psychiatric unit, he or she retains a right to informed consent, to a plan of treatment, to involvement in that plan and a chance to review it. In the vast majority of cases, families are also involved in the decision-making process.
Severe exhaustion and stress are indeed among the situations that can trigger acute episodes of manic behavior, anxiety or psychosis in individuals with certain genetic vulnerabilities to these conditions. Shy of reading the woman’s medical records from that visit and her subsequent hospitalization, Ms. Caplan had no way of assessing the woman’s mental state of mind or physical condition in the ER. Her ex post facto diagnosis is unprofessional, which is ironic in light of the accusation she lodges against the ER doctor through her op-ed.
Washington Post, Caplan: Since the 1980s, when I first made public my concerns about psychiatric diagnosis, I have heard from hundreds of people who have been arbitrarily slapped with a psychiatric label and are struggling because of it. About half of all Americans get a psychiatric diagnosis in their lifetimes.
APA Response: The referenced statistic is false. The U.S. Office of Minority Health & Health Disparities website, which is the source link, does NOT say that half of all Americans get a psychiatric diagnosis in their lifetimes. Its page notes that 57.7 million adults and children receive such diagnoses, which calculates to roughly a quarter of the U.S. population. The National Institute of Mental Health website provides a full explanation for this percentage:
“An estimated 26.2 percent of Americans ages 18 and older—about one in four adults—suffer from a diagnosable mental disorder in a given year. When applied to the 2004 U.S. Census residential population estimate for ages 18 and older, this figure translates to 57.7 million people.Even though mental disorders are widespread in the population, the main burden of illness is concentrated in a much smaller proportion—about 6 percent, or 1 in 17—who suffer from a serious mental illness.”
Washington Post, Caplan: Receiving any of the 374 psychiatric labels — from nicotine dependence disorder to schizophrenia — can cost anyone their health insurance, job, custody of their children, or right to make their own medical and legal decisions.
APA Response: DSM disorders have increased in number during the past half century, reflecting a far greater understanding, and important codification, of mental disorders. It is important to note that DSM-5 will decrease the total number of diagnostic disorders. The current manual includes 297 disorders; DSM-5 will list about 250.
Washington Post, Caplan: And if patients take psychiatric drugs, they risk developing physical disorders such as diabetes, heart problems, weight gain and other serious conditions. In light of the subjectivity of these diagnoses and the harm they can cause, we should be extremely skeptical of them.
APA Response: The medical community’s longstanding position is that medications always be prescribed and monitored very carefully. Clinicians should always ensure a medication is having its intended benefit—which can be substantial, allowing a person to carry on with school, work and family—and as little adverse effect as possible. The DSM is strictly a diagnostic guide; it does not address treatment approaches or drug administration.
Washington Post, Caplan: Psychiatric diagnosis is unregulated, so the doctor who met briefly with the aforementioned patient wasn’t required to spend much time understanding what caused her heart to race or to seek another doctor’s opinion. If he had, the patient would have realized that her bipolar diagnosis wasn’t necessary or appropriate. Neither on her ER trip nor in later visits to therapists did anyone explain how sleep deprivation impairs the body’s ability to handle pressure.
In our increasingly psychiatrized world, the first course is often to classify anything but routine happiness as a mental disorder, assume it is based on a broken brain or a chemical imbalance, and prescribe drugs or hospitalization; even electroshock is still performed.
APA Response: This characterization minimizes the impact that mental disorders can have on lives in the short or long term. “Broken brain” is a clever sound bite, but it ignores considerable scientific evidence on the role of neurotransmitters in triggering the symptoms of some disorders. Yes, we have a ways to go before we will understand the exact mechanism by which these chemicals work, but that’s no different than our still incomplete understanding of why the pancreas begins producing too much insulin, for example, and a patient develops diabetes.
Washington Post, Caplan: According to the psychiatrists’ bible, the Diagnostic and Statistical Manual of Mental Disorders (DSM), which defines the criteria for doling out psychiatric labels, a patient can fall into a bipolar category after having just one “manic” episode lasting a week or less. Given what this patient was dealing with, it is not surprising that she was talking quickly, had racing thoughts, was easily distracted and was intensely focused on certain goals (i.e. caring for her family) — thus meeting the requisite four of the eight criteria for a bipolar diagnosis.
When a social worker in the psychiatric ward advised the patient to go on permanent disability, concluding that her bipolar disorder would make it too hard to work, the patient did as the expert suggested. She also took a neuroleptic drug, Seroquel, that the doctor said would fix her mental illness.
APA Response: Ms. Caplan’s description is puzzling; she acknowledges the patient met half the criteria for bipolar disorder, yet she then insists, without knowing the patient’s clinical state of mind in the ER, that the patient received an incorrect diagnosis. We disagree, not on the question of whether the patient’s diagnosis was right or wrong, but on Ms. Caplan’s ability to make that judgment. Were the tables turned, and we were diagnosing someone based on such minimal, after-the-fact information, we’d expect Ms. Caplan to issue the same criticism of us.
Washington Post, Caplan: Over the next 10 months, the woman lost her friends, who attributed her normal mood changes to her alleged disorder. Her self-confidence plummeted; her marriage fell apart. She moved halfway across the country to find a place where, on her dwindling savings, she and her son could afford to live. But she was isolated and unhappy. Because of the drug she took for only six weeks, she now, more than three years later, has an eye condition that could destroy her vision.
This patient is well-educated and white, and before her illness, she was wealthy. Research reflects that she was more likely to be diagnosed as mentally ill than a man in her circumstances. Racism, classism, ageism and homophobia can also affect who receives a psychiatric diagnosis.
It would be less troubling if such diagnoses helped patients, but getting a label often hinders recovery. It can lead a therapist to focus on narrow checklists of symptoms, with little consideration for what is causing the patient’s suffering.
APA Response: This description overlooks the fact that a diagnosis of a mental disorder can make a crucial difference in a person being able to access treatment. Without a diagnosis, there often is little to no reimbursement for care.
And having an inventory of potential symptoms to consider ensures a fuller, not narrower, patient review. Checklists help to keep clinicians from focusing on just one or two areas and ignoring or overlooking other key concerns, including cause and context.
Washington Post, Caplan: The marketing of the DSM has been so effective that few people — even therapists — realize that psychiatrists rarely agree about how to label the same patient. As a clinical and research psychologist who served on (and resigned from) two committees that wrote the current edition of the DSM, I used to believe that the manual was scientific and that it helped patients and therapists. But after seeing its editors using poor-quality studies to support categories they wanted to include and ignoring or distorting high-quality research, I now believe that the DSM should be thrown out.
APA Response: There is a PAST truth to the statement about psychiatrists rarely agreeing on diagnoses, as her citation from 1994 indicates. In fact, 25 years earlier, a key study (Kraemer, 1969) compared rates of psychiatric hospitalization in New York and London and blamed inadequate diagnostic definitions for the glaring variations in hospitalization rates (much higher for schizophrenia in New York and much higher for manic depressive disorder in London). A subsequent study (Cooper et al., 1972) used explicit diagnostic criteria and psychiatric interviews for these disorders and showed almost identical rates in the two cities for comparable disorders.
The fact that psychiatrists can get different diagnoses actually argues for a DSM, at least one that provides clinicians around the world with a common language and clear, specific diagnostic criteria. That way, a case of schizophrenia is a case of schizophrenia no matter where it’s being assessed.
During the development of DSM-5, field trials were held in diverse settings nationwide, from large academic medical centers to individual practitioners’ offices, in part to test the critical question of reliability of proposed criteria among clinicians.
Washington Post, Caplan: An undeserved aura of scientific precision surrounds the manual: It has “statistical” in its title and includes a precise-seeming three- to five-digit code for every diagnostic category and subcategory, as well as lists of symptoms a patient must have to receive a diagnosis. But what it does is simply connect certain dots, or symptoms — such as sadness, fear or insomnia — to construct diagnostic categories that lack scientific grounding. Many therapists see patients through the DSM prism, trying to shoehorn a human being into a category.
At a convention in Philadelphia starting May 5, the DSM’s publisher, the American Psychiatric Association, is due to vote on whether to send the manual’s next edition, the DSM-5, to press. The APA is a lobbying group for its members, not an organization with patients’ interests as its top priority. It has earned $100 million from sales of the current edition, the DSM-IV.
APA Response: APA members were never scheduled to vote on DSM-5 at the 2012 annual meeting in Philadelphia. A final decision on publication, which will be made by the association’s Board of Trustees, is planned for late 2012.
The meeting did offer members an array of presentations about the latest changes to proposed diagnostic criteria—proposals posted online for anyone from mental health professionals to mental health consumers or their families to review and offer feedback. Three times since 2010, APA has invited responses during weeks-long public comment periods. Each of the thousands of comments received has been considered by the Task Force and Work Groups that have been leading the DSM-5 development process. There are few comparable examples of such public transparency in medicine, and we encourage mental health consumers, families and organizations to weigh in until June 15 at www.DSM5.org.
Washington Post, Caplan: Allen Frances, lead editor of the current DSM, defends his manual as grounded in science, but at times he has acknowledged its lack of scientific rigor and the overdiagnosing that has followed. “Our net was cast too wide,” Frances wrote in a 2010 Los Angeles Times op-ed, referring to the explosion of diagnoses that led to “false ‘epidemics’ ” of attention deficit disorder, autism and childhood bipolar disorder. The current manual, released in 1994, he wrote, “captured many ‘patients’ who might have been far better off never entering the mental health system.”
Frances has even said that “there is no definition of a mental disorder. . . . These concepts are virtually impossible to define precisely.”
Mental health professionals should use, and patients should insist on, what does work: not snap-judgment diagnoses, but instead listening to patients respectfully to understand their suffering — and help them find more natural ways of healing. Exercise, good nutrition, meditation and human connection are often more effective — and less risky — than drugs or electroshock.
APA Response: Hundreds of expert clinicians and researchers have devoted much of the last five years to developing the best DSM possible. From their deliberations has come the proposed Cultural Formulation Interview, which would be included in the next manual to help clinicians better assess cultural aspects of psychiatric diagnosis and address them respectfully. As a description posted on the DSM website explains, “The CFI focuses on the patient’s perspectives on the problem, the role of others in influencing the course of the problem, the impact of the patient’s cultural background, the patient’s help-seeking experiences, and current expectations about treatment and other forms of care.”
Washington Post, Caplan: Patients should not be limited in their choices of treatment, but they should be better informed. If someone knows about the many ways that suffering can be addressed, including a drug or a treatment with potential benefits and harms, and they still want to try it, they should be able to.
While patients who think they have been harmed by a diagnosis can file a lawsuit or a complaint with a state licensing body that almost never happens. However, this weekend marks a big change, as some people are speaking up: About 10 people who received diagnoses from the current DSM edition are filing complaints against the manual’s editors. (I have worked with the patients to prepare their complaints, and I’m filing my own as a concerned clinician.)
The complainants allege that the DSM’s editors failed to follow the APA’s ethical principles, which include taking account of scientific knowledge and respecting patients’ welfare and dignity. They are asking the APA to order the editors to redress the harm done to them — or in one case, to a deceased relative — and to anyone else hurt by receiving a label. They want the APA to hold a public hearing about the dangers of psychiatric diagnosis to gather information about the extent of the damage and look for ways to minimize it. Additionally, they are asking the APA to make clear to therapists and to the public that psychiatric diagnoses are not scientific and that they often put patients at risk.
APA Response: The role of APA and the upcoming DSM-5 is to provide clear, precise definitions of mental disorders and diagnostic criteria that are scientifically grounded and clinically useful. Doing so not only will produce the best manual possible but will encourage its careful and judicious use by experienced health professionals. The result will absolutely uphold APA’s ethical principles: to ensure humane care and effective treatment for all persons with mental disorders.
Washington Post, Caplan: As the patient labeled as bipolar told me: “If I had never been diagnosed, I probably would still be married, would live close to family and friends and not be so lonely, and would not be living on the financial edge.”
Any instance in which mental health patients do not feel they have been diagnosed properly or benefitted from treatment is unacceptable. But such experiences do not discredit the DSM. Instead, they highlight why it needs to offer the most specific, evidence-based and reliable definitions and diagnostic criteria. And that is our expectation for the manual’s next edition.