The Crisis of U.S. Hospice Care: Family and Freedom at the End of Life

Braswell (health care ethics, Saint Louis Univ.) explores the political pressures and practical realities that led the founders of the hospice movement in the United States to make family caregivers an integral part of modern hospice care. The author argues that one of the major failures of the hospice system is its reliance on informal networks of unpaid caregivers—most often family members—who manage daily tasks such as bathing and feeding, rather than professional long-term care. The reason, Braswell explains, was an effort to reduce cost and provide a cheap alternative to professional care in order to secure Medicare funding. Braswell documents how economic and social pressures, as well as increased mobility and lack of skills, means that many families cannot provide the proper care for loved ones, often with tragic consequences for patients. Braswell combines historical archival work, philosophical analysis, ethnography, political theory, theology, and autobiographical fragments. The result is an intriguing historical and ethnographic study.