A SCHOLARLY BOOK REPOSITORY
Examining the works cited above, as well as memoirs by Mitch Albom, Roland Barthes, Jean-Dominique Bauby, Art Buchwald, Randy Pausch, David Rieff, Philip Roth, and Morrie Schwartz, Jeffrey Berman's analysis of this growing genre yields some surprising insights. While the authors have much to say about the loneliness and pain of dying, many also convey joy, fulfillment, and gratitude. Harold Brodkey is willing to die as long as his writings survive. Art Buchwald and Randy Pausch both use the word fun to describe their dying experiences. Dying was not fun for Morrie Schwartz and Tony Judt, but they reveal courage, satisfaction, and fearlessness during the final stage of their lives, when they are nearly paralyzed by their illnesses.
It is hard to imagine that these writers could feel so upbeat in their situations, but their memoirs are authentically affirmative. They see death coming, yet they remain stalwart and focused on their writing. Berman concludes that the contemporary end-of-life memoir can thus be understood as a new form of death ritual, "a secular example of the long tradition of ars moriendi, the art of dying."
Encompassing twenty years of working alongside persons living with HIV/AIDS in New York, Irving documents the radical but often unspoken and unvoiced transformations in perception, knowledge, and understanding that people experience in the face of death. By bringing an “experience-near” ethnographic focus to the streams of inner dialogue, imagination, and aesthetic expression that are central to the experience of illness and everyday life, this monograph offers a theoretical, ethnographic, and methodological contribution to the anthropology of time, finitude, and the human condition. With relevance well-beyond the disciplinary boundaries of anthropology, this book ultimately highlights the challenge of capturing the inner experience of human suffering and hope that affect us all—of the trauma of the threat of death and the surprise of continued life.
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.
A Few Months to Live describes what dying is like from the perspectives of nine terminally ill individuals and their caregivers. Documenting a unique study of end-of-life experiences that included detailed conversations in home care settings, the book focuses on how participants lived their daily lives, understood their illnesses, coped with symptoms-especially pain-and searched for meaning or spiritual growth in their final months of life. The accounts are presented largely in the participants' own words, illuminating both the medical and non-medical challenges that arose from the time each learned the "bad news" through their final days of life and memorial services.
Describing the nationwide crisis that surrounds end-of-life care, the authors contend that informal caregiving by relatives and close friends is an enormous and too-often invisible resource that deserves close and public attention. By incorporating not only the ill person's but also the family's perspective, they portray the nine participants in the contexts of their daily lives and relationships rather than simply as patients. Addressing such issues as palliative care, quality of life, financial hardship, grief and loss, and communications with medical personnel, the authors identify how families, professionals, and communities can respond to the challenges of terminal illness and the need to confront life's end.
In the course of caring for the ill or dying, health care professionals are sometimes the only ones available to provide spiritual comfort to their patients. In our modern pluralistic society, where patients could come from any number of religious traditions, it can often be difficult to find exactly the right words in these situations.
Prayers and Rituals at a Time of Illness and Dying: The Practices of Five World Religions by experienced physician and theologian Pat Fosarelli offers clear instructions for health care professionals on how to better understand the needs of their Buddhist, Hindu, Muslim, Christian, and Jewish patients during these difficult times. Devoting separate chapters to each tradition, Fosarelli briefly outlines the basic beliefs and then looks at the main tenets of each religion, exploring the varied approaches that they take to illness and end-of-life issues. For each tradition, she also describes practices and offers suitable prayers. Each chapter suggests modifications that may be necessary for Western hospitals, modifications for children, and specific suggestions about what not to do or say in respect to different faith traditions.
This easy-to-use, pocket-sized resource will be referenced again and again by physicians, paramedics, hospital and military chaplains, pastoral counselors, hospice providers, and other medical professionals.
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.
In the quarter century since the landmark Karen Ann Quinlan case, an ethical, legal, and societal consensus supporting patients' rights to refuse life-sustaining treatment has become a cornerstone of bioethics. Patients now legally can write advance directives to govern their treatment decisions at a time of future incapacity, yet in clinical practice their wishes often are ignored.
Examining the tension between incompetent patients' prior wishes and their current best interests as well as other challenges to advance directives, Robert S. Olick offers a comprehensive argument for favoring advance instructions during the dying process. He clarifies widespread confusion about the moral and legal weight of advance directives, and he prescribes changes in law, policy, and practice that would not only ensure that directives count in the care of the dying but also would define narrow instances when directives should not be followed. Olick also presents and develops an original theory of prospective autonomy that recasts and strengthens patient and family control.
While focusing largely on philosophical issues the book devotes substantial attention to legal and policy questions and includes case studies throughout. An important resource for medical ethicists, lawyers, physicians, nurses, health care professionals, and patients' rights advocates, it champions the practical, ethical, and humane duty of taking advance directives seriously where it matters most-at the bedside of dying patients.
These Granite Islands is an arresting novel about a woman who, on her deathbed, recalls the haunting and fateful summer of 1936, a summer that forever changed her life. Sarah Stonich’s debut novel, set on the Iron Range of Minnesota, is an intimate and gripping story of a friendship, a portrait of marriage, and a meditation on the tragedy of loss.
In Vigil, Shapiro chronicles with heart-wrenching lyricism the final four weeks of Beth's life in a hospice, attended by her parents, brothers, husband, daughter and friends. One by one, as loved ones arrive to visit Beth, Shapiro reveals fragments of their personal history, bringing to life a troubled and poignant past. A visit from their brother David triggers the memory of a searing betrayal—the parents disowned Beth after learning from David that she was secretly dating a black man; a visit from the parents recalls their bitter quarrels over Beth's radical politics; a visit from Beth's black husband brings the painful memory of their wedding and her parents' refusal to attend. These recollections and feelings that surface with each visit evoke the unresolved, deeply disturbing issues that kept the Shapiro family estranged for so long, making the reconciliation that Beth's death brings to her family all the more extraordinary.
Shapiro gives an unconventionally honest account of our responses—horror, relief, impatience, exhaustion, exhilaration, projection, fear, self-criticism, and a sense of fulfillment—in the presence of the dying. Concluding with a selection of moving poems, Shapiro affirms the astonishing link between creativity and healing, and provides a coda to the whole experience. The price of human connection may be great, but human connection, in the end, has the power to redeem even the most painful of human experiences.
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