Death and Resurrection in US Hospice Care: Disability and Bioethics at the End-of-Life Open Access

Braswell, Harold Stuart (2014)

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Death and Resurrection in US Hospice Care: Disability and Bioethics at the End-of-Life is a rethinking of the concept of "death" in US bioethics. Rather than defining death as an isolated biological endpoint, this dissertation attempts to reorient bioethics around an understanding of death as a dynamic social process. Such a definition requires examining the unique ways in which death is defined in both particular clinical situations and broader structures of health policy. The result is an understanding of death that is both more intellectually robust and clinically practical than current bioethical definitions of death.

I demonstrate the utility of this approach through a historical and ethnographic study of how death is defined in US hospice care. Through a historical study I argue that the modern US hospice movement developed a definition of death that was explicitly non-medical. In this non-medical conception, death was a matter of private kinship; its meaning was constituted by kinship relations in the private sphere. This definition of death led hospice care to be based on an outpatient treatment model, in which the patient's long-term care needs were to be met by his or her family. Through an ethnographic study of a "Amberview Hospice--a contemporary "modern" hospice organization--I argue that this model creates systemic problems in the treatment of patients who lack sufficient kinship support to sustain hospice care. As an alternative to this arrangement of treatment, I conduct an ethnographic examination of Our Lady of Perpetual Help Home, a charitable end-of-life care facility. "Our Lady" provides both long-term and hospice care to those patients who have been excluded from the health care system. This unique treatment modality is, in turn, based in the home's particularly Catholic conception of death. I argue that Our Lady's synthesis of hospice and long-term care is a model for the reorganization of US end-of-life care.

I conclude by arguing, based on my rethinking of the definition of death, that the reform of US hospice care should be considered a bioethical project.

Table of Contents

Table of Contents

Introduction: Bioethics, Disability Studies, and the Question of Death 1

Chapter 1: Death: A New Definition 29

Chapter 2: A Faithful Betrayal: Technology, Humanism, and the Medicalization of Death in the Modern US Hospice Movement, 1970-80 80

Chapter 3: A Gap in the System: Patients with Limited Kinship Support under the Medicare Hospice Benefit 121

Chapter 4: Death and Resurrection in Our Lady of Perpetual Help Home: The Dying God, The Eucharistic Enactment, and the Totality of Catholic End-of-Life Care 160

Conclusion: The Reform of US Hospice Care as a Bioethical Project 196

Bibliography 210

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