Ultimately, medications make the difference between whether a person with mental illness relapses or stays well, Dr. Marcela Garces found in a 2002 study for UT Center for Disability Studies. But the problem is not as simple as it sounds. “Staying on medication sounds so simple and so obvious, some would see that as the only solution to the problem,” Garces writes. “What is more complex and less obvious is what it takes for an individual with a complicated mental illness to actually do that.”
In the 1950s, the first effective psychoactive medications transformed mental health care. Until then, most doctors believed mental illness was incurable, and the best available treatment was lifelong incarceration. With the advent of effective medications, the mentally ill might experience long periods of stability, and might even be well enough to leave an institution. In the 1960s, state systems began to transfer people out of the hospitals and back home. The federal government promised money for “de-institutionalization,” but those funds quickly dried up. Nationwide, state spending on mental illness today is a third less than it was in the Fifties. As funding shrank, improved but also more expensive medications ate up more and more of mental health budgets. Services like counseling, case management, or housing were often jettisoned.
Moreover, the side effects of medications can be debilitating. They can make you too tired and stiff to get out of bed, too disoriented to do simple chores. They can make you shake, twitch, or talk to yourself. They can make you fat. For someone already suffering from paranoia, delusions, or depression, effects like these can be overwhelming. Staying the course often takes full-time support from friends or family, and the regular supervision of a doctor or caseworker. But consumers interviewed for Garces’ study say community mental health centers rarely provide such supervision. “I don’t think they monitor the way they should,” one repeatedly hospitalized consumer told Garces’ research team. “They spend 30 seconds with you and go on to the next patient.”
Many consumers said doctors’ coldness or indifference kept them from seeking further help. Staff turnover was high, Garces found, and many consumers saw a different doctor on every visit. Changing doctors often meant changing medications; the unfamiliar round of side effects might push them off meds and back into the hospital. Garces found that state hospitals released patients after their court-ordered stays were up, whether or not they felt well enough to leave. Patients said they rarely received any follow-up services after release. “I have been to the state hospital like 20 times and never heard about aftercare,” one patient told Garces’ researchers. “They give you some bus tickets to go to the Salvation Army or go to camp, but that is it.”
When Garces looked at patients who were no longer being hospitalized, she found success to be as complex a picture as failure. Patients who were stable in their communities had doctors or caseworkers whom they liked. They had found their own ways to manage the symptoms of their illnesses. They had places to live. And they were taking their medications. Garces concluded that it takes a “holistic” approach to treat the most serious mental illness.
“Effective medications are essential to wellness, but they are only effective if people take them,” Garces writes. “Without the holistic focus, consumers may not have the supports in place to be able to take them.”
This article appears in November 12 • 2004.