The Oxford Handbook of Ethics at the End of Life
The Oxford Handbook of Ethics at the End of Life
Stuart J. Youngner is the Susan E. Watson Professor of Bioethics and Chair of the Department of Bioethics at Case Western Reserve University School of Medicine. He has written and spoken extensively about definitions of death, organ and tissue transplantation, end‐of‐life decisions, and clinical ethics consultation.
Robert Arnold, MD, Professor of Medicine, UPMC Montefiore Hospital
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Abstract
This handbook explores the topic of death and dying from the late twentieth to the early twenty-first centuries, with particular emphasis on the United States. In this period, technology has radically changed medical practices and the way we die as structures of power have been reshaped by the rights claims of African Americans, women, gays, students, and, most relevant here, patients. Respecting patients’ values has been recognized as the essential moral component of clinical decision making. Technology’s promise has been seen to have a dark side: it prolongs the dying process. For the first time in history, human beings have the ability to control the timing of death. With this ability comes a responsibility that is awesome and inescapable. How we understand and manage this responsibility is the theme of this volume. The book has six sections. Section I examines how the law has helped shape clinical practice, emphasizing the roles of rights and patient autonomy. Section II focuses on specific clinical issues, including death and dying in children, continuous sedation as a way to relieve suffering at the end of life, and the problem of prognostication in patients who are thought to be dying. Section III considers psychosocial and cultural issues. Section IV discusses death and dying among various vulnerable populations, such as the elderly and persons with disabilities. Section V deals with physician-assisted suicide and active euthanasia (lethal injection). Finally, Section VI looks at hospice and palliative care as ways to address the psychosocial and ethical problems of death and dying.
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Front Matter
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Introduction
Stuart J. Youngner andRobert M. Arnold
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Section I Clinical and Legal Issues
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1
Legal Issues in Death and Dying: How Rights and Autonomy Have Shaped Clinical Practice
Alan Meisel
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2
“So What Do You Want Us to Do?”: Patients’ Rights, Unintended Consequences, and the Surrogate’s Role
Mark Aulisio
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3
Death at the Beginning: The Neonatal Intensive Care Unit
Renee D. Boss
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4
Dying Children and the Kindness of Strangers
John Lantos
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5
Medical Futility and Potentially Inappropriate Treatment
Douglas White andThaddeus Pope
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6
Conscientious Objection
Mark R. Wicclair
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7
Continuous Sedation at the End of Life
Sigrid Sterckx andKasper Raus
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8
The Ethics of Medically Assisted Nutrition and Hydration at the End of Life: Separating the Wheat from the Chaff
Daniel P. Sulmasy
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9
Disorders of Consciousness and Neuro-Palliative Care: Toward an Expanded Scope of Practice for the Field
Joseph J. Fins andMaria Masters
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10
Ethical Issues in Prognosis and Prognostication
Alexander K. Smith andPaul Glare
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1
Legal Issues in Death and Dying: How Rights and Autonomy Have Shaped Clinical Practice
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Section II Theoretical, Cultural, and Psychosocial Issues
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11
The Smell of Chlorine: Coming to Terms with Death
Stuart J. Youngner
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12
Talking and Working with Dying Patients: True Grief and Loss
Lisa Humphrey
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13
The Nature of Suffering
Eric J. Cassell
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14
On Our Difficulties Speaking to and About the Dying
David Barnard
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15
The Cost of Dying Among the Elderly in the United States: Ethical Issues
Susannah Rose andJanelle Highland
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16
Death, Dying, and the Disabled
Anita Silvers andLeslie Francis
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17
The Effect of Social Media on End-of-Life Decision Making
Jessica Berg
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18
Cultural Factors
Megan Crowley-Matoka
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19
Ethnicity as a Factor
Kimberly S. Johnson andRamona L. Rhodes
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20
Reframing Care in End-of-Life Care Helpful Themes from a Catholic-Christian Understanding of Death
Michael McCarthy andMark G. Kuczewski
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11
The Smell of Chlorine: Coming to Terms with Death
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Section III Physician-Assisted Death
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Section IV The Emergence of Palliative Care and Hospice
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End Matter
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