front cover of And a Time to Die
And a Time to Die
How American Hospitals Shape the End of Life
Sharon R. Kaufman
University of Chicago Press, 2006
Over the past thirty years, the way Americans experience death has been dramatically altered. The advent of medical technology capable of sustaining life without restoring health has changed where, when, and how we die. In this revelatory study, medical anthropologist Sharon R. Kaufman examines the powerful center of those changes: the hospital, where most Americans die today. She deftly links the experiences of patients and families, the work of hospital staff, and the ramifications of institutional bureaucracy to show the invisible power of the hospital system in shaping death and our individual experience of it. In doing so, Kaufman also speaks to the ways we understand what it means to be human and to be alive.

“An act of courage and a public service.”—San Francisco Chronicle

“This beautifully synthesized and disquieting account of how hospital patients die melds disciplined description with acute analysis, incorporating the voices of doctors, nurses, social workers, and patients in a provocative analysis of the modern American quest for a ‘good death.’”—Publishers Weekly

“Kaufman exposes the bureaucratic and ethical quandaries that hover over the modern deathbed.”—Psychology Today

“Kaufman’s analysis illuminates the complexity of the care of critically ill and dying patients [and] the ambiguity of slogans such as ‘death with dignity,’ ‘quality of life,’ and ‘stopping life support.’ . . . Thought-provoking reading for everyone contemplating the fate of us all.”—New England Journal of Medicine

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front cover of Dying Green
Dying Green
A Journey through End-of-Life Medicine in Search of Sustainable Health Care
Christine Vatovec
Rutgers University Press, 2023
The slow violence being inflicted on our environment—through everything from carbon emissions to plastic pollution—also represents an impending public health catastrophe. Yet standard health care practices are more concerned with short-term outcomes than long-term sustainability. Every resource used to deliver medical care, from IV tubes to antibiotics to electricity, has a significant environmental impact. This raises an urgent ethical dilemma: in striving to improve the health outcomes of individual patients, are we damaging human health on a global scale?
 
In Dying Green, award-winning educator Christine Vatovec offers an engaging study that asks us to consider the broader environmental sustainability of health care. Through a comparative analysis of the care provided to terminally ill patients in a conventional cancer ward, a palliative care unit, and an acute-care hospice facility, she shows how decisions made at a patient’s bedside govern the environmental footprint of the healthcare industry. Likewise, Dying Green offers insights on the many opportunities that exist for reducing the ecological impacts of medical practices in general, while also enhancing care for the dying in particular. By envisioning a more sustainable approach to care, this book offers a way forward that is better for both patients and the planet.
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front cover of Making Health Care Whole
Making Health Care Whole
Integrating Spirituality into Patient Care
Christina Puchalski
Templeton Press, 2021

In the last fifteen years, the field of palliative care has experienced a surge in interest in spirituality as an important aspect of caring for seriously ill and dying patients. While spirituality has been generally recognized as an essential dimension of palliative care, uniformity of spiritual care practice has been lacking across health care settings due to factors like varying understandings and definitions of spirituality, lack of resources and practical tools, and limited professional education and training in spiritual care.

In order to address these shortcomings, more than forty spiritual and palliative care experts gathered for a national conference to discuss guidelines for incorporating spirituality into palliative care. Their consensus findings form the basis of Making Health Care Whole. This important new resource provides much-needed definitions and charts a common language for addressing spiritual care across the disciplines of medicine, nursing, social work, chaplaincy, psychology, and other groups. It presents models of spiritual care that are broad and inclusive, and provides tools for screening, assessment, care planning, and interventions. This book also advocates a team approach to spiritual care, and specifies the roles of each professional on the team.
 
Serving as both a scholarly review of the field as well as a practical resource with specific recommendations to improve spiritual care in clinical practice, Making Health Care Whole will benefit hospices and palliative care programs in hospitals, home care services, and long-term care services. It will also be a valuable addition to the curriculum at seminaries, schools of theology, and medical and nursing schools.
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front cover of Meaning in Suffering
Meaning in Suffering
Caring Practices in the Health Professions
Edited by Nancy Johnston and Alwilda Scholler-Jaquish
University of Wisconsin Press, 2007
     Compelling, timely, and essential reading for healthcare providers, Meaning in Suffering addresses the multiplicity of meanings suffering brings to all it touches: patients, families, health workers, and human science professionals. Examining suffering in writing that is both methodologically rigorous and accessible, the contributors preserve first-hand experiences using narrative ethnography, existential hermeneutics, hermeneutic phenomenology, and traditional ethnography. They offer nuanced insights into suffering as a human condition experienced by persons deserving of dignity, empathy, and understanding. Collectively, these essays demonstrate that understanding the suffering of the "other" reveals something vital about the moral courage required to heal—and stay humane—in the face of suffering.
 
 
Winner, Nursing Research Category, American Journal of Nursing
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front cover of Prelude to Hospice
Prelude to Hospice
Florence Wald, Dying People, and their Families
Abel, Emily K.
Rutgers University Press, 2018
Hospices have played a critical role in transforming ideas about death and dying. Viewing death as a natural event, hospices seek to enable people approaching mortality to live as fully and painlessly as possible. Award-winning medical historian Emily K. Abel provides insight into several important issues surrounding the growth of hospice care. Using a unique set of records, Prelude to Hospice expands our understanding of the history of U.S. hospices. Compiled largely by Florence Wald, the founder of the first U.S. hospice, the records provide a detailed account of her experiences studying and caring for dying people and their families in the late 1960s and early 1970s. Although Wald never published a report of her findings, she often presented her material informally. Like many others seeking to found new institutions, she believed she could garner support only by demonstrating that her facility would be superior in every respect to what currently existed. As a result, she generated inflated expectations about what a hospice could accomplish. Wald’s records enable us to glimpse the complexities of the work of tending to dying people. 
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front cover of Values at the End of Life
Values at the End of Life
The Logic of Palliative Care
Roi Livne
Harvard University Press, 2019

This insightful study examines the deeply personal and heart-wrenching tensions among financial considerations, emotional attachments, and moral arguments that motivate end-of-life decisions.

America’s health care system was built on the principle that life should be prolonged whenever possible, regardless of the costs. This commitment has often meant that patients spend their last days suffering from heroic interventions that extend their life by only weeks or months. Increasingly, this approach to end-of-life care is coming under scrutiny, from a moral as well as a financial perspective. Sociologist Roi Livne documents the rise and effectiveness of hospice and palliative care, and growing acceptance of the idea that a life consumed by suffering may not be worth living.

Values at the End of Life combines an in-depth historical analysis with an extensive study conducted in three hospitals, where Livne observed terminally ill patients, their families, and caregivers negotiating treatment. Livne describes the ambivalent, conflicted moments when people articulate and act on their moral intuitions about dying. Interviews with medical staff allowed him to isolate the strategies clinicians use to help families understand their options. As Livne discovered, clinicians are advancing the idea that invasive, expensive hospital procedures often compound a patient’s suffering. Affluent, educated families were more readily persuaded by this moral calculus than those of less means.

Once defiant of death—or even in denial—many American families and professionals in the health care system are beginning to embrace the notion that less treatment in the end may be better treatment.

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