Advance Directives: Stigma Strikes Again

Stigma's effects are often most pernicious when they are least conscious. A case in point: Do people with mental illness not develop physical ailments as well? Might they not have preferences for how they wish to be treated if they become seriously ill? If the answer to those questions is, "Yes, of course," then why—with all the attention paid in the past two decades to promoting advance directives for end-of-life care—have persons with serious mental illnesses been utterly neglected when it comes to efforts to stimulate the use of advance directives?

Two papers by Foti and colleagues in this issue of Psychiatric Services underscore the irrationality of ignoring the needs and desires of people with mental illnesses with regard to end-of-life care. Interviewing a sample of community-dwelling patients, these authors found a high level of concern about end-of-life issues and strong interest in providing guidance to future decision makers about their treatment preferences. The choices they made were within the range of those expressed by groups without mental disorders. It is clear that the similarities to non-mentally ill populations entirely overshadow the divergences, including a nearly uniform ability to talk about these difficult issues without undue distress.

Foti and colleagues encourage mental health agencies to engage their patients in discussions aimed at completing advance directives. But such programs have met with mixed success among the general population, and, once more, people with serious mental illnesses are likely to resemble the rest of us. The 50 minutes it takes to complete the interview described by Foti and colleagues is a luxury few mental health agencies can afford without dedicated funding. And leaving it to the primary care system, which is almost as overwhelmed, will just ensure continuation of the inadequate status quo.

Moreover, a plethora of studies offer persuasive data showing that advance directives, even when completed, infrequently affect actual decision making when the end of life is near. Clinicians are usually unaware of the documents or are unable to gain access to them. Even when they are available, they are often ignored in the face of familial objections or neglected in the barely controlled pandemonium of emergency care.

What then should we expect regarding the future of end-of-life advance directives for persons with serious mental illnesses? The answer should be, The same as we do for everyone else. As dissemination efforts are undertaken and problems of access are solved, there is no reason a mental illness should preclude any person from benefiting from these initiatives.