The Crisis of US Hospice Care: Family and Freedom at the End of Life

by Harold Braswell

Overview

Exploring the failure of hospice in America to care for patients and families 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.

Product Details

ISBN-13:	9781421429823
Publisher:	Johns Hopkins University Press
Publication date:	11/26/2019
Pages:	288
Product dimensions:	5.90(w) x 9.00(h) x 1.00(d)
Age Range:	18 Years

About the Author

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

Table of Contents

Acknowledgments
Introduction
1. Beyond the Right to Die
2. Depending on the Family
3. Birth of a Crisis
4. What Happens to Dying People When Love Is Not Enough
5. Caring across the American Political Divide
6. When the End of Life Begins
Conclusion
Afterword: How My Mother Died
Notes
Index

What People are Saying About This

Anita J. Tarzian

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.

Rosemarie Garland-Thomson

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.

Farr Curlin

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.

Arthur Kleinman

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.

Emily K. Abel

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.

Daniel S. Goldberg

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.

Charles Camosy

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.

From the Publisher

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

Editorial Reviews

The Crisis of US Hospice Care is an honest look at the current problems with hospice care in the United States . . . [Braswell] has opened a door into the real challenges we face in achieving a society. For as Mahatma Gandhi cautioned us, a society's true measure can be found in how it treats its most vulnerable members.
—Stephen R. Connor, PhD, The Worldwide Hospice and Palliative Care Alliance, Omega: Journal of Death and Dying

From the Publisher

This book is an incisive account of U.S. hospice policy and practice since its origins in the late 1960s. But it is much more than that. Drawing insightfully on diverse perspectives including bioethics, the health humanities, and disability studies, the book is also an impassioned call for a political movement around the experience of dying that would not only redress policy flaws but make U.S. society more hospitable to dying people and their families and ultimately 'create a new basis for how we understand freedom, our collective mythology, and our national identity.'

Bulletin of the History of Medicine - Jesse Ballenger

Braswell's book is extremely accessible for audiences of any level while raising important questions . . . It would be a valuable reading for medical professionals, public health professionals, and anyone else interested in healthcare that is provided at a vulnerable time of peoples' lives.

Yale Journal of Biology and Medicine - Anthony Chui

The Crisis of US Hospice Care is an honest look at the current problems with hospice care in the United States . . . [Braswell] has opened a door into the real challenges we face in achieving a society. For as Mahatma Gandhi cautioned us, a society's true measure can be found in how it treats its most vulnerable members.

Omega: Journal of Death and Dying - Stephen R. Connor

Reading The Crisis of US Hospice Care was a joyful experience . . . Braswell's use of emotional stories gave his argument a soul that could not be ignored and brought me on an unforgettable emotional journey . . . I believe this book should be read by every American that knows someone who is dying and/or will eventually die themselves.

The Journal of Religion, Spirituality, and Aging - Brooke Heckel

This book is an impressive example of the interdisciplinary scope that works of bioethics can attain. Readers well versed in the topic will find much that is familiar—but often with a new twist that keeps them on their toes. There is also much in these pages that challenges the conventional wisdom on end-of-life care that has evolved over the last half century.

Hastings Center Report - Bruce Jennings

02/07/2020

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. VERDICT This important book should be required reading for both hospice professionals and bioethicists, as it connects ethical insights with rich ethnographic work and penetrating analysis.—Aaron Klink, Duke Univ., Durham, NC

Library Journal