March 10, 2002

Beautiful Minds Can Be Recovered

By COURTENAY M. HARDING

OSTON - The film "A Beautiful Mind," about the Nobel Prize-winning mathematician John F. Nash Jr., portrays his recovery from schizophrenia as hard-won, awe-inspiring and unusual. What most Americans and even many psychiatrists do not realize is that many people with schizophrenia - perhaps more than half - do significantly improve or recover. That is, they can function socially, work, relate well to others and live in the larger community. Many can be symptom-free without medication.

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.

Courtenay M. Harding is a senior director of the Center for Psychiatric
Rehabilitation at Boston University's Sargent College of Health and
Rehabilitation Sciences.

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