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The Crisis of US Hospice Care

Family and Freedom at the End of Life

Hospice is the dominant form of end-of-life care in the United States. But while the US hospice system provides many forms of treatment that are beneficial to dying people and their families, it does not encompass what is commonly referred to as long-term care, which includes help with the activities of daily living: feeding, bathing, general safety, and routine hygienic maintenance. Frequently, such care is carried out by an informal network of unpaid caregivers, such as the person's family or loved ones, who are often ill-prepared to offer this type of support.

In The Crisis of US Hospice Care, Harold Braswell argues that the stress of providing long-term care typically overwhelms family members and that overdependence on familial caregiving constitutes a crisis of US hospice care that limits the freedom of dying people. Arguing for the need to focus on the time just before death, Braswell examines how the relationship of hospice to familial caregiving evolved. He traces the history of hospice over the past fifty years and describes the choice that people dying with inadequate familial support face between a neglectful home environment and an impersonal nursing home.

A nuanced look at the personal and political dimensions that shape long-term, end-of-life care, this historical and ethnographic study demonstrates that the crisis in US hospice care can be alleviated only by establishing the centrality of hospice to American freedom. Providing a model for the transformative work that is required going forward, The Crisis of US Hospice Care illustrates the potential of hospice for facilitating a new way of living our last days and for having the best death possible.

About the Author

Harold Braswell is an assistant professor of health care ethics at Saint Louis University.

Endorsements

"A highly original book with the potential to influence various aspects of end-of-life scholarship and discourse. Braswell plants seeds for a new vision of the US family structure, social life, policy, and governance that would ease the burden on dying persons and their loved ones. Excellently written and approachable."

- Anita J. Tarzian, PhD, RN, University of Maryland

"Lucid and engaging. Combining stories with analysis, Braswell draws readers in, helping them see the human significance of the question at stake. A constructive appraisal of hospice's genealogy that highlights its vulnerabilities and celebrates its strengths, this beautifully written, intellectually challenging book will be of interest to a wide array of people."

- Farr Curlin, MD, Duke University

"In this extremely ambitious book, Harold Braswell, an important scholar in bioethics, leverages unique expertise and approaches drawn from disability studies, the history of medicine, social work, and ethnography into a cohesive whole. This truly interdisciplinary volume is an impressive achievement by an impressive scholar, and I have no hesitation in enthusiastically recommending it."

- Daniel S. Goldberg, Center for Bioethics and Humanities, University of Colorado, author of The Bioethics of Pain Management: Beyond Opioids

"Drawing on extensive research in various fields as well as his own ethnographic study, Harold Braswell demonstrates that the US hospice system cannot continue to depend on family caregivers and points to a path for reform. The Crisis of US Hospice Care is essential reading not only for health professionals, policymakers, and academics but for all of us, because we and our families inevitably will confront the issues Braswell raises."

- Emily K. Abel, University of California, Los Angeles, author of Living in Death's Shadow: Family Experiences of Terminal Care and Irreplaceable Loss

"The United States, with few exceptions, either pushes death to the corners of nursing homes and hospitals or heaps an impossible burden onto families and their homes. Braswell, rather than slouching toward assisted suicide, deftly articulates the cultural and structural changes required to give the dying and their families a nonviolent and freedom-giving alternative."

- Charles Camosy, Fordham University, author of Beyond the Abortion Wars: A Way Forward for a New Generation

"The pressure on families at end of life, which makes many feel inadequate as caregivers and some to be that way, is well described by Braswell in his quest to strengthen hospice in America. You don't have to agree with the author's emphasis on freedom to recognize that he has written a useful book with an important political message: families need more state support to assist them in providing care for dying loved ones."

- Arthur Kleinman, MD, Harvard University, coauthor of A Passion for Society: How We Think about Human Suffering

"With this elegant and deeply ethical guide on navigating the tasks of dying, Harold Braswell offers us a bracing ethnographic meditation on how love and work intertwine in end-of-life care. Focusing on the potential of hospice care, Braswell gathers personal, familial, and communal considerations into a set of policy recommendations that can guide how we manage the current demographic challenges of dying here and now."

- Rosemarie Garland-Thomson, Emory University, author of Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature
Johns Hopkins University Press
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