The Philosophy and Practice of Patient Control in Hospice: The Dynamics of Autonomy versus Paternalism

Abstract

The hospice philosophy of care for the terminally ill emphasizes patients' control over their remaining time. This article is based on approximately three years of participant observation research in several hospice settings where the practice of providing patients control, or autonomy, during their remaining life and dying was explored. The findings suggest that, despite the best efforts of hospice staff, attempts to fulfill the goals of this philosophy were constrained by several factors: efforts at symptom control, patient residence, patient disease state, and staff limit setting. Examples, implications, and the staff's attempts at solution are discussed.