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Joint Center for Psychiatric Rehabilitation, Illinois Institute of Technology, Chicago
Copyright © 2011 by the American Psychiatric Association.
Although evidence supporting the effectiveness of several treatments for people with serious mental illnesses increases exponentially, adherence to such treatments remains alarmingly low. Service providers are concerned that absence of treatment leads to exacerbation of symptoms and to disabilities. At its extreme, treatment nonadherence becomes a legal issue for psychiatrists or other providers that leads them to make unilateral and sometimes restrictive decisions. Many family members share this concern about a loved one's nonadherence to treatment.
Unfortunately, some consumer advocates are troubled that giving this kind of responsibility to providers leads them to make overprotective decisions. The physical disability community refers to this as “dignity of risk” and “right to failure.” Attempting to make life “risk free” robs people of potential opportunities. People do not land a better job, move to a nicer neighborhood, build more intimate relationships, or enjoy fewer medication side effects if they do not consider and pursue the risky option. One of the things that make these pursuits a risk is the absence of a priori clear results. For example, it is uncertain whether meeting new people at a synagogue will broaden one's support network or cause more social anxiety. Many of a person's best achievements come the hard way: falling flat, picking oneself up, and moving on. Without these flops, people are unclear about their potential limits and miss out on unforeseen alternatives that may benefit them.
Some people seem to be unable to make clear decisions because of cognitive deficits associated with serious mental illnesses. Evaluating a person's decision capacity, however, is not a black-and-white process. Even people with major psychotic illnesses have lucid periods. What is the final arbiter of whether a person's decision represents a pathological process? Is a decision to stop medications by a person with a formal thought disorder necessarily indicative of poor cognition? Research shows that opting out of a treatment does not necessarily lead to worse symptoms or to disabilities. When an illness intensifies, a person rarely cascades into a situation with irreversible consequences. Most decisions about ending psychosocial treatments related to work or independent living do not lead to relapse and catastrophe. Even nonadherence to medication regimens does not necessarily lead to tragedy. Risk and failure are part of human agency. Saving people from these is taking away their dignity.
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