Camila Knudsen (not her real name) doesn’t like to recall how her world began changing when she was 14. Background sounds in her suburban neighborhood—lawn mowers, planes, barking dogs—intermingled in a deafening buzz. The cacophony made it hard for her to hear what people were saying or to respond sensibly. “My mind was a blank,” she recalls. “Sometimes I felt like I couldn’t see or hear anything. I’d walk past someone and if they were laughing, I felt like they were laughing at me.” Exhausted, Camila holed up in her room at home and avoided her friends. She wouldn’t shower, and she spent much of her time staring into space. Her father remembers how on 9/11 he and Camila watched television together as a plane flew into the second tower of the World Trade Center. Camila didn’t so much as bat an eye when the building burst into flames. “It was as if she hadn’t seen it,” he says. “She had such a hard time speaking; it was almost to the point that she was catatonic.”
Alarmed by their daughter’s behavior, Camila’s parents began looking for help. But local psychiatrists were booked solid, some of them for the next six months. Meanwhile, her downward spiral accelerated. Then a pediatrician referred the Knudsens to William McFarlane, a psychiatrist in Portland, Maine, who had recently launched an experimental treatment program for early-stage mental illness. McFarlane championed a radical view that psychotic illnesses, including schizophrenia, can be prevented by treatment if caught early enough. His program, Portland Identification and Early Referral, or PIER, was a groundbreaking effort to find and treat patients showing early warning signs of psychosis.
Camila was accepted in September 2001 on the day she was assessed. The PIER staff believed that her symptoms, coupled with a history of schizophrenia on both sides of the family, put her at high risk for a full-blown psychotic break with reality. Quick intervention was crucial, McFarlane and his staff stressed, to prevent the onset of major hallucinations, delusions, and paranoia. Should Camila become psychotic even once, the lingering effects on her brain could diminish chances for recovery. One of the most crippling features of schizophrenia is that if delusional thinking is left unchecked, it takes over, robbing patients of the ability to recognize—and seek treatment for—their illness. Losing touch with reality puts schizophrenic patients at high risk of job loss, illness, homelessness, and suicide.
The Knudsens began PIER’s recommended treatment, a novel mix of psychotherapy and medication. Camila stuck with the program for four years and her symptoms subsided, slowly at first, but steadily. “You couldn’t tell she has a mental illness now if you tried,” her father says. “She’s going to be a productive member of society.”
By taking schizophrenia prevention to the community, McFarlane is charting a bold new course. With nearly $15 million in new funding from the Robert Wood Johnson Foundation—a longtime PIER supporter—his program has been broadened from Portland to four additional sites nationwide (Sacramento, California; Ypsilanti, Michigan; Salem, Oregon; and Glen Oaks, New York), embracing a combined population of more than 1 million people. Similar programs are ongoing in other countries, notably Australia, Denmark, Canada, England, and Germany. McFarlane’s program is by far the largest effort in the United States to prevent psychosis.
Through PIER’s efforts, McFarlane seems to have kept dozens of patients who once teetered on the edge of psychosis from falling into its grip. Some within the medical community, however, regard the preventive approach as promising but still in the experimental stage. Researchers are far from a complete understanding of what causes schizophrenia and how it affects the brain, and some psychiatrists contend that treating a patient for a disease not yet manifest is a clear violation of a basic tenet of medicine: to do no harm. But others support McFarlane in his efforts to block the onset of an illness so disabling that it can make a patient want to take his or her own life. “I don’t know that we have a way to prevent psychosis yet because we don’t have a clear understanding of what causes it,” says psychiatrist E. Fuller Torrey, executive director of the Stanley Medical Research Institute in Chevy Chase, Maryland. “But is it worth it to try? I’d say the answer is yes.”
With his treatment model expanding nationally, McFarlane hopes to show conclusively that his approach is indeed viable. One controversial feature of his program—which might more accurately be termed intervention than prevention—involves offering antipsychotic medication when only the warning signs of schizophrenia and other psychotic illnesses, such as altered perception and paranoia, are present.
“We have every reason to be cautious,” McFarlane says. “But our experience has been that so many of these kids are on the verge of psychosis that we don’t have the time or luxury to try other things. I’m a great proponent of psychosocial interventions,” such as counseling, family psychoeducation, and community support, “but none of them works very fast. What I wish we knew is whether there is a subgroup that might be stable long enough for the psychosocial treatments alone to take effect. But that’s a tricky race, and not one you want to lose.
“Our kids keep getting better and better,” McFarlane says. “Our experience has been that after a couple of years, they don’t need a lot more support.”
A bearded, professorial figure, McFarlane has long been on the leading edge of advancements in the psychiatric understanding of schizophrenia. In the 1970s, after completing a residency in psychiatry and a two-year fellowship at the Albert Einstein College of Medicine that focused on family therapy with severely psychotic patients, he began working at a mental health clinic in the South Bronx. But he found that family therapy often made patients worse. It failed, he says, because its methods were based on a now antiquated view that dysfunctional families caused psychosis. “The entire enterprise of family therapy was based on the notion that dysfunctional families brought about the onset of schizophrenia,” he says. “There wasn’t any real science behind that idea, but it was widely accepted and taught. And it turned out to be 180 degrees wrong.”
