By Matthew C. Wiencke

The numbers are grim: Over 16 million American adults, about 1 in 17, live with severe mental illness. And studies show that 60% of them get no treatment and 35% get inadequate treatment, says DMS psychiatrist Robert Drake, M.D., Ph.D. Most of the 60% have been involved with the mental-health system but have "opted out," says Drake. "They're afraid of the coerciveness of the system, they don't find the system friendly or welcoming, they don't find that they get what they want from the system."

Goal: So Drake and his colleagues at the Dartmouth Psychiatric Research Center set a goal of making the system more patient- and family-friendly through shared decision-making—offering patients resources to help them develop their own treatment plans and take an active role in monitoring the results.

Very little research has been done on shared decision-making in the context of severe mental illness. And "with mental illness where decision impairment is part of the illness, there's a lot of skepticism that shared decision-making is even viable," says Jared Adams, Ph.D., an M.D.- Ph.D. student at Dartmouth.

So Drake, Adams, and psychologist George Wolford, Ph.D., conducted a pilot study of 30 clients of a New Hampshire community mental-health center; all had a severe mental illness—schizophrenia, bipolar disorder, or major depression.

The clients filled out questionnaires about their decision-making experiences and preferences regarding new medication, hospitalization (whether or not to be hospitalized for treatment), housing, finding and securing employment, and choosing a caregiver. Clients rated each area on a scale from "mostly my doctor's decision" (a passive role) to "mostly my decision" (a collaborative or autonomous role). They also completed a decision aid to help them articulate questions, benefits, and risks regarding their psychiatric care.

Most clients said they'd prefer greater participation in decisions about their psychiatric care. In choosing and managing new antipsychotic medications, for example, 23 clients (77%) indicated a preference for an autonomous or collaborative role, but only 11 (37%) rated their current experience as non-passive. The study participants were less likely to want a passive role in making medication decisions about their psychiatric care than their general medical care. The results were published in Psychiatric Services.

Rank: Adams, the paper's lead author, repeated the study with more subjects as part of his Ph.D. thesis, using computer decision aids he created to help clients rank and choose medications based on their side effects. "We need to treat people with respect and recognize that they have a right to make decisions about their own bodies, whether they're mentally ill or not," says Drake. He sees a need for "systems of care that are really patientcentered, so that people and their families can understand what their options are and what the evidence is and make reasonable choices."