A messy necessary end

Abstract

Objective: To promote development of written advance directives and appointment of a proxy for health care by patients who are under the care of a neurologist.

Background: Since 1989, the American Academy of Neurology (AAN) has endorsed but not actively promoted advance directives. In the years since publication of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), much published material has contradicted the notion that creating advance directives offers patients a useful means of extending their autonomy.

Methods: The author reviewed the post-SUPPORT literature, in which numerous articles criticize and others continue to uphold the use of advance directives. He also conducted a pilot study concerning the health care proxy. Additionally, he reexamined his experiences as an ethics consultant, mindful of the medical literature unfavorable to advance directives, to challenge his own opinion that creating directives and appointing a health care proxy are valuable activities for all adults to engage in and for neurologists to promote.

Results: Very few articles focus on advance directives and neurology. This literature is not present in neurology specialty journals. Only two of the five neurologists approached by the author were positive about advance directives and collaborated fully in the pilot study. Reviewing his experiences provided the author with numerous examples of the actual or potential usefulness of health care proxies.

Conclusions: Increasing the advance directives literature in neurology specialty journals may lead to the creation of health care documents by more neurologic patients and development of innovative ways of extending the autonomy of previously competent individuals. The author has recently formed a volunteer organization, Patient Advocates to Preserve Autonomy (PAPA), to increase effectiveness of advance directives. It is hoped that the reservations of some neurologists about advance directives and proxy decision-making may be lessened if they improve their knowledge of the subject and convince themselves that addressing it is one of the obligations attendant on providing “principal care” for many of their patients. The focus initially needs to be on attitudes, rather than methods. However, this pilot study showed that a passive approach is ineffective. A campaign within the AAN to promote advance directives as an aspect of principal care would be helpful. Patients who have lost the capacity to make their own health care decisions often benefit from advance directives and, especially, from having an appointed health care proxy. Those benefits may improve if patient, proxy, and physician are carefully prepared for their roles.