by Ronald S. Honberg
National Director for Policy and Legal Affairs
Jane, a 36-year-old woman suffering from schizoaffective disorder, is very frightened. In the past, her experiences in public psychiatric hospitals have been very traumatic. The last time she was hospitalized, the psychiatrist responsible for her treatment could hardly speak English. When she tried to explain that she didn’t want to take certain medications because they exacerbated her tardive dyskinesia, he either didn’t understand her or dismissed her as someone who was not capable of speaking in her own behalf. He prescribed Haldol to her, which, in fact, was one of the medications she didn’t want to take. She describes her hospitalizations as terrifying, dehumanizing experiences. “It’s not that I’m opposed to psychiatric treatment”, she says. “I know that I need treatment for my brain disorder. But, I’m not willing to accept treatment when I am given no say in how I am going to be treated. I would rather go to jail or become homeless again than to have to go back to the hospital.”
Mr. and Mrs. Smith have seen this happen so many times before. Their son, John, who suffers from schizophrenia, has stopped taking his medication. This, they know, will lead to gradual decompensation, with potentially horrendous consequences. Each time, they must stand by and watch their son deteriorate until he becomes so ill that he meets the state’s criteria for involuntary commitment and forced treatment. Each time, they worry that their son may not survive this episode. They worry that he will commit suicide or will be hurt by someone else because of bizarre and unpredictable behaviors stemming from his untreated severe mental illness. They also hate having to go to court to involuntarily commit their son. These periods of decompensation are particularly agonizing because their son, when he is doing well, has expressed on numerous occasions his understanding of his need for treatment and his appreciation of his parents for intervening when he is helpless and unable to help himself. Yet, when he goes off medications, he shuns his family, denies his illness and his need for treatment. “There must be a better way,” Mrs. Smith sighs. “I can’t bear to stand by and watch John suffer this way.”
These vignettes describe two scenarios quite familiar to persons with severe mental illnesses and their families. Consumers frequently experience situations in which they are given little control over important treatment decisions. Families just as frequently are frustrated by having to stand by and watch their loved ones deteriorate and suffer.
Psychiatric advance directives have recently emerged as potentially helpful tools in resolving these problems. There are essentially two types of advance directives. Instruction directives”, such as living wills, provide specific information about treatment and related wishes of individuals drafting them (declarants) should they lose capacity to make these decisions on their own. “Proxy directives” assign “health proxies” or “health care powers of attorney” to individuals entrusted to act as substitute decisionmakers should declarants lose capacity to make their own decisions. Frequently, advance directives combine both of these forms, blending specific instructions about healthcare preferences with identification of individuals assigned “health proxies.”