Psychiatrist Turns Illness Into Empowerment Tool

Daniel Fisher, M.D., earned an enviable academic record: A.B. from Princeton University; Ph.D. in biochemistry from the University of Wisconsin; M.D. from George Washington University, and a residency at Harvard Medical School that eventually resulted in board certification in psychiatry.

During the time Fisher was accumulating those credentials, however, he also received a less desirable label. He was given the diagnosis of schizophrenia and hospitalized several times. His personal experience with the mental health system ultimately led to a position as codirector of the National Empowerment Center, a technical assistance center for consumers funded by the Center for Mental Health Services (CMHS).

More important, Fisher’s ability to look at the system from a consumer’s perspective has resulted in Personal Assistance in Community Existence (PACE), an approach to the treatment of mental illness that emphasizes recovery, hope, peer support, and self-determination. He and Laurie Ahern, codirector of the center, examined their own experiences with recovery and produced a model that incorporates the recent emphasis on consumer empowerment and also, according to Fisher, “reminds psychiatry of its roots, when it represented a person-to-person philosophy.”

CMHS funded research that enabled Fisher and others to interview people who had “recovered” from serious mental illness. Among other factors, their definition of recovery included a score of 70 or greater on the Global Assessment of Functioning (GAF) and the ability to fill an appropriate social role, such as student, parent, or worker, for a specified period. Taking medication did not eliminate a person from the study.

The researchers developed 13 principles based on what interviewees told them about how they perceived their recovery process (see box).

Fisher said, “Over and over again, we heard, ‘I needed someone to believe in me.’ ” That message resonated with his own experience when he was hospitalized at Bethesda Naval Hospital at age 25. He has written about his encounter with a “a young corpsman, the lowest-ranking clinician in the emergency room,” who showed that he cared “about the me deep inside” and gave Fisher hope that he might some day recover.

At about the same time as that research was concluding in 1998, consumers were beginning to bring their concerns to the National Empowerment Center about the proliferation of efforts to implement the Program of Assertive Community Treatment (also known as PACT or ACT). PACT was originally designed to enable people to live in the community, rather than in psychiatric hospitals. But, according to Fisher and Ahern, it has become a “coercive, lifelong, and nonclient-directed system with medication compliance as its most important tenet.”

In their manual, “Personal Assistance in Community Existence (PACE),” Fisher and Ahern contrast PACT with PACE. They describe key tenets of PACT as “Your mental illness is caused by a genetically or chemically based brain disorder.” “Your disorder is permanent.” “You must remain under the care of professionals forever.” “You should not work until you are symptom free.”

The opposing principles for PACE are “Your distress is due to a combination of losses, traumas, and lack of supports.” “You can completely recover.” “You will be able to gain your main support from peers and friends rather than professionals.” “Begin meaningful work as soon as you can as work helps with recovery.”

Ahern said, “PACE represents more an approach to the treatment of mental illness than a fully developed operational plan.” But, according to Fisher, the model immediately hit a chord with consumers, family members, and professionals in rehabilitation. In fact, the Mental Health Corporation of Denver, the designated community mental health authority for the city and county, recently held a two-day meeting of consumers, state officials, and other interested people to discuss how it could be implemented.

Roy Starks, director of rehabilitation services for the corporation, said, “We’re very excited about the model. It’s consistent with our emphasis on strength-based case management and our use of clubhouses. We have some PACT programs and hope to have PACE as well.” The corporation serves 7,500 men, women, and children annually.

Recently Fisher and Ahern began to reach one of their most important audiences: professors of psychiatry. The two advocates believe that to reach the next generation of psychiatrists, they must find ways of introducing the ideas behind the model into training programs.

As Fisher recalled, “My own experience didn’t fit with what I was being taught in my residency program. I remember hearing the line, ‘You can’t talk to an illness.’ But talking is a key method for building trust.”

Karen Lee, M.D., an assistant professor of clinical psychiatry at Southern Illinois University, said that she invited Fisher to speak to residents because the model is “cutting edge” in its emphasis on consumer empowerment and the “logical next step” for the department of psychiatry. For about 15 years, the department has operated an ACT program as part of the training offered to residents.

Lee has “lots of questions” about the premise that people with serious mental illness can recover, but thinks the idea merits research. She and others in the department are investigating funding in collaboration with the state’s Office of Rehabilitation to develop and extend the PACE model.

“Ideally,” she said, “We would set up a program that would operate side by side with ACT and apply outcome measures to both of them.”

A manual describing PACE is available from the National Empowerment Center by calling (800) POWER-2-U. Additional information can be found on the Web at www.contac.org/pace.htm. ▪