Patients' Participation in Clinical Ethics: A Vicarious Voice

AbstractDespite the prevailing norm of patient autonomy, a patient's direct participation in clinical ethics remains quite infrequent given that most often the patient is incapacitated. Often, clinical ethics consultants deal with someone representing the patient-either family members or a legal surrogate (DPA) who has decision-making authority. This stands in sharp contrast to most European countries, where an incapacitated patient typically falls under medical jurisdiction. Despite recent legal trends in Europe recognizing the role of advance directives and the possibility of a surrogate representing the patient (such as a "trusted person"), these persons are only "consulted" by the healthcare team; most often, they have no decision-making authority. This article explores these contrasting cultural differences regarding who (a legally recognized surrogate in the United States vs. mostly the physician in Europe) has the legitimacy to speak on behalf of the incapacitated patient who can no longer voice his/her preferences. Surrogates (often families) are in the United States given a voice for their incapacitated loved one because they are often those bearing the burden of any decisions; in many European countries, however, society (the state) at large will bear much of such cost. By looking into the broader contrasting framework of autonomy-focused bioethics, such as in the United States, versus public health ethics, which entails commitment to the common good before the individual, much of the differences of patients' role in clinical ethics and even the format of clinical ethics support services here and abroad can be better understood.