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Reconceiving Decisions at the End of Life in Pediatrics: Decision-Making as a Form of Ritual

ABSTRACT:Medical anthropologists have long recognized that healing practices and rituals may seek to address family dynamics, alter roles within a community, and resolve social rifts, and that illness itself may be rooted in social and cultural concerns as much as physical and biological ones. Within this framework, decision-making for children at the end of life can be conceptualized as a type of healing ritual, directed not at physical healing of the individual body, but at the healing of a family, which will continue beyond the patient’s death. Using this lens, the decision-making process becomes more important than the decisions themselves, as it is the process itself that initiates, or interferes with, family healing. This essay presents anthropological perspectives on the goals of healing and healing rituals, providing examples in which the recipient of healing was not the patient but the family or community. Drawing on this scholarship, the author reconceives decision-making at the end of life in pediatrics as a form of healing ritual, explores how this perspective might help clinicians to reframe situations that provoke moral and empathic distress, and analyzes the ethical implications of these arguments.