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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

In conversation with emigrants from Laos and Cambodia, Jean M. Langford repeatedly met with spirits: the wandering souls of the seriously ill, dangerous ghosts of those who died by violence, restless ancestors displaced from their homes. For these emigrants, the dead not only appear in memories, safely ensconced in the past, but also erupt with a physical force into the daily life and dreams of the present.

Inspired by these conversations, Consoling Ghosts is a sustained contemplation of relationships with the dying and the dead. At their heart, as Langford’s work reveals, emigrants’ stories are parables not of cultural difference but rather of life and death. Langford inquires how and why spirits become implicated in remembering and responding to violence, whether the bloody violence of war or the more structural violence of social marginalization and poverty. What is at stake, she asks, when spirits break out of their usual confinement as symbolic figures for history, heritage, or trauma to haunt the corridors of hospitals and funeral homes? Emigrants’ theories and stories of ghosts, Langford suggests, inherently question the metaphorical status of spirits, in the process challenging both contemporary bioethics of dying and dominant styles of mourning. Consoling Ghosts explores the possibilities opened up by a more literal existence of ghosts, from the confrontation of shades of past violence through bodily ritual to rites of mourning that unfold in acts of material care for the dead instead of memorialization.

Ultimately the book invites us to consider alternate ways of facing death, conducting relationships with the dead and dying, and addressing the effects of violence that continue to reverberate in bodies and social worlds.

End-of-life issues and questions are complex and frequently cause confusion and anxiety.  In Death with Dignity,theologian, medical ethicist, and pastoral caregiver Peter A. Clark examines numerous issues that are pertinent to patients, family members, and health care professionals, including physiology, consciousness, the definition of death, the distinction between extraordinary and ordinary means, medical futility, “Do Not Resuscitate” orders, living wills, power of attorney, pain assessment and pain management, palliative and hospice care, the role of spirituality in end-of-life care, and physicians’ communication with terminal patients. Patients, family members, medical students, and health care professionals will find in Death with Dignity thepractical and ethical knowledge they need to capably and confidently cope with end-of-life challenges.

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.

     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

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. 

A volume of the Russell Sage Foundation's Social Science Frontiers, occasional publications reviewing new fields for social science development. This paper explores the links between the social and biomedical sciences concerning the prolongation and termination of life, with the aim to stimulate scholars, foundations, and government agencies to further study death and dying in American society.

Seven in ten Americans over the age of age of sixty who require medical decisions in the final days of their life lack the capacity to make them. For many of us, our biggest, life-and-death decisions—literally—will therefore be made by someone else. They will decide whether we live or die; between long life and quality of life; whether we receive heroic interventions in our final hours; and whether we die in a hospital or at home. They will determine whether our wishes are honored and choose between fidelity to our interests and what is best for themselves or others. Yet despite their critical role, we know remarkably little about how our loved ones decide for us.
             
Speaking for the Dying tells their story, drawing on daily observations over more than two years in two intensive care units in a diverse urban hospital. From bedsides, hallways, and conference rooms, you will hear, in their own words, how physicians really talk to families and how they respond. You will see how decision makers are selected, the interventions they weigh in on, the information they seek and evaluate, the values and memories they draw on, the criteria they weigh, the outcomes they choose, the conflicts they become embroiled in, and the challenges they face. Observations also provide insight into why some decision makers authorize one aggressive intervention after the next while others do not—even on behalf of patients with similar problems and prospects. And they expose the limited role of advance directives in structuring the process decision makers follow or the outcomes that result.
           
Research has consistently found that choosing life or death for another is one of the most difficult decisions anyone can face, sometimes haunting families for decades. This book shines a bright light on a role few of us will escape and offers steps that patients and loved ones, health care providers, lawyers, and policymakers could undertake before it is too late.
 

There has hitherto been limited systematic social research on the prolongation and termination of life, and minimal agreement of the resolution of the moral and social dilemmas that dying provokes. Among the topics discussed by the contributors are: the social context of dying—when, where, and why people die; what they think about death; the cultural background of the patients' attitudes; and how medical practitioners cope with terminal illness. The social, ethical, legal, and economic problems arising from the prolongation and termination of life are also set forth.

Reexamines the nature of death and dying as seen from the physician's point of view. Unlike other treatments of the subject, this study is concerned not with what physician's should do for the critically ill, but with their actual behavior. Based on extensive interviews with physicians in several medical specialties, more than 3000 questionnaires completed by physicians in four specialties, and studies of the records of actual hospital patients, the book shows that while withdrawal of treatment in certain types of cases is widespread, euthanasia is rare.