They improve without fanfare and frequently without much help from the mental health system. Many recover because of sheer persistence at fighting to get better, combined with family or community support. Though some shake off the illness in two to five years, others improve much more slowly. Yet people have recovered even after 30 or 40 years with schizophrenia. The question is, why haven't we set up systems of care that encourage many more people with schizophrenia to reclaim their lives?
We have known what to do and how to do it since the mid-1950's. George Brooks, clinical director of a Vermont hospital, was using thorazine, then a new drug, to treat patients formerly dismissed as hopeless. He found that for many, the medication was not enough to allow them to leave the hospital. Collaborating with patients, he developed a comprehensive and flexible program of psychosocial rehabilitation. The hospital staff helped patients develop social and work skills, cope with daily living and regain confidence. After a few months in this program, many of the patients who hadn't responded to medication alone were well enough to go back to their communities. The hospital also built a community system to help patients after they were discharged.
These results were lasting. In the 1980's, when the patients who had been through this program in the 50's were contacted for a University of Vermont study, 62 percent to 68 percent were found to be significantly improved from their original condition or to have completely recovered. The most amazing finding was that 45 percent of all those in Dr. Brooks's program no longer had signs or symptoms of any mental illness three decades later.
Today, most of the 2.5 million Americans with schizophrenia do not get the kind of care that worked so well in Vermont. Instead, they are treated in community mental health centers that provide medication -- which works to reduce painful symptoms in about 60 percent of cases -- and little else. There is rarely enough money for truly effective rehabilitation programs that help people manage their lives.
Unfortunately, psychiatrists and others who care for the mentally ill are often trained from textbooks written at the turn of the last century -- the most notable by two European doctors: Emil Kraepelin in Germany and Eugen Bleuler in Switzerland. These books state flatly that improvement and recovery are not to be expected.
Kraepelin worked in back wards that simply warehoused patients, including some in the final stages of syphilis who were wrongly diagnosed with schizophrenia. Bleuler, initially more optimistic, revised his prognoses downward after studying only hospitalized patients -- samples of convenience -- rather than including patients who were ultimately discharged.
The American Psychiatric Association's newest Diagnostic and Statistical Manual -- D.S.M.-IV, published in 1994 -- repeats this old pessimism. Reinforcing this gloomy view are the crowded day rooms and shelters and large public mental-health caseloads.
Also working against effective treatment are destructive social forces like prejudice, discrimination and poverty, as well as overzealous cost containment in public and private insurance coverage. Public dialogue is mostly about ensuring that people take their medication, with little said about providing ways to return to productive lives. We promote a self-fulfilling prophecy of a downward course and then throw up our hands and blame the ill person, or the illness itself, as not remediable.
In addition to the Vermont study, nine other contemporary research studies from across the world have all found that over decades, the number of those improving and even recovering from schizophrenia gets larger and larger. These long-term, in-depth studies followed people for decades, whether or not they remained in treatment, and found that 46 percent to 68 percent showed significant improvement or had recovered. Earlier research had been short-term and had looked only at patients in treatment.
Although there are many pathways to recovery, several factors stand out. They include a home, a job, friends and integration in the community. They also include hope, relearned optimism and self-sufficiency.
Treatment based on the hope of recovery has had periodic support. In 1961 a report of the American Medical Association, the American Psychiatric Association, the American Academy of Neurology and the Justice Department said, ''The fallacies of total insanity, hopelessness and incurability should be attacked and the prospects of recovery and improvement though modern concepts of treatment and rehabilitation emphasized.'' In 1984, the National Institute of Mental Health recommended community support programs that try to bolster patients' sense of personal dignity and encourage self-determination, peer support and the involvement of families and communities. Now there are renewed calls for recovery-oriented treatment. They should be heeded. We need major shifts in actual practice.
Can all patients make the improvement of a John Nash? No. Schizophrenia
is not one disease with one cause and one treatment. But we, as a society,
should recognize a moral imperative to listen to what science has told us
since 1955 and what patients told us long before. Many mentally ill people
have the capacity to lead productive lives in full citizenship. We should
have the courage to provide that opportunity for them.