Principles and Purpose: The Patient Surrogate's Perspective and Role

Abstract

The critical role of surrogates—commonly if erroneously called “Informal caregivers”—has been generally ignored by clinical and bioethical literatures. While assumed to provide no more than ancillary support, these patient representatives directly or indirectly affect patient care to the extent they inhibit or facilitate both home-based care and patient decisions regarding treatment alternatives. Members of this group include relatives and neighbors who may or may not act in consort as advisors, assistants, care providers, and surrogate decisionmakers acting on the patient's behalf with members of the medical community. Not only do they often possess a critical voice strongly influencing both patient care decisions and, after discharge, home care and rehabilitation, this paper argues they do so from a perspective that is often radically different from one endorsed by medical professionals.