Without Power, Without Glory: Palliative Care for Children the Nation’s Best Hospital Couldn’t Cure

Abstract

Based on ethnographic fieldwork and drawing on anthropological, clinical, and social science literature, Without Power, Without Glory examines the work of a palliative care team of physicians, social workers, and nurses who cared for children and families who faced catastrophe and could not be cured in an institution whose professional identity, metrics for success, and global advertising campaigns are centered on cure. This dissertation details the social construction of pediatric palliative care, which is often wrongly seen as both synonymous with hospice and clouded by the team’s close relationships with patients and families. Since the palliative care team often follows patients for many years, it also captures the way that children age out of innocence and into suspicion, especially with regards to pain medication for chronic illnesses. As a consult service that operates at a financial loss for the hospital, this dissertation reports on the palliative care team’s struggle to advocate for patients and families in the face of bureaucratic indifference. Though the hospital aggressively recruits children with complex illnesses for financial gain, it documents how comfort is pitted against technical care, which means the palliative care team and especially chaplaincy services are often excluded or not even hired. Finally, Without Power, Without Glory explores truth and lie in the disclosure of prognosis to families and shows how the responsibility to foresee is often diffused from the medical team onto children who are said to speak through tests.