A messy necessary end - Health care proxies need our support

Objective: To promote development of written advance directives and appoint ment of a proxy for health care by patients who are under the care of a neu rologist. Background: Since 1989, the American Academy of Neurology (AAN) h as endorsed but not actively promoted advance directives. In the years sinc e publication of the Study to Understand Prognoses and Preferences for Outc omes and Risks of Treatments (SUPPORT), much published material has contrad icted the notion that creating advance directives offers patients a useful means of extending their autonomy. Methods: The author reviewed the post-SU PPORT literature, in which numerous articles criticize and others continue to uphold the use of advance directives. He also conducted a pilot study co ncerning 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 a nd appointing a health care proxy are valuable activities for all adults to engage in and for neurologists to promote. Results: Very few articles focu s on advance directives and neurology. This literature is not present in ne urology specialty journals. Only two of the five neurologists approached by the author were positive about advance directives and collaborated fully i n the pilot study. Reviewing his experiences provided the author with numer ous examples of the actual or potential usefulness of health care proxies. Conclusions: Increasing the advance directives literature in neurology spec ialty journals may lead to the creation of health care documents by more ne urologic patients and development of innovative ways of extending the auton omy of previously competent individuals. The author has recently formed a v olunteer organization, Patient Advocates to Preserve Autonomy (PAPA), to in crease effectiveness of advance directives. It is hoped that the reservatio ns of some neurologists about advance directives and proxy decisionmaking m ay be lessened if they improve their knowledge of the subject and convince themselves that addressing it is one of the obligations attendant on provid ing "principal care" for many of their patients. The focus initially needs to be on attitudes, rather than methods. However, this pilot study showed t hat a passive approach is ineffective. A campaign within the AAN to promote advance directives as an aspect of principal care would be helpful. Patien ts 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 physic ian are carefully prepared for their roles.