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For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life. Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes. Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.
Caring for the Dying describes a whole new way to approach death and dying. It explores how the dying and their families can bring deep meaning and great comfort to the care given at the end of a life. Created by Henry Fersko-Weiss, the end-of-life doula model is adapted from the work of birth doulas and helps the dying to find meaning in their life, express that meaning in powerful and beautiful legacies, and plan for the final days. The approach calls for around-the-clock vigil care, so the dying person and their family have the emotional and spiritual support they need along with guidance on signs and symptoms of dying. It also covers the work of reprocessing a death with the family afterward and the early work of grieving. Emphasis is placed on the space around the dying person and encourages the use of touch, guided imagery, and ritual during the dying process. Throughout the book Fersko-Weiss tells amazing and encouraging stories of the people he has cared for, as well as stories that come from doulas he has trained and worked with over the years. What is unique about this book is the well-conceived and thorough approach it describes to working skillfully with the dying. The guidance provided can help a dying person, their family, and caregivers to transform the dying experience from one of fear and despair into one that is uplifting and even life affirming. You will see death in a new light and gain a different perspective on how to help the dying. It may even change the way you live your life right now.
Although the need for improved care for dying patients is widely recognized and frequently discussed, few books address the needs of the physicians, nurses, social workers, therapists, hospice team members, and pastoral counselors involved in care. Care of the Dying Patient contains material not found in other sources, offering advice and solutions to anyone—professional caregiver or family member—confronted with incurable illness and death. Its authors have lectured and published extensively on care of the dying patient and here review a wide range of topics to show that relief of physical suffering is not the only concern in providing care. This collection encompasses diverse aspects of end-of-life care across multiple disciplines, offering a broad perspective on such central issues as control of pain and other symptoms, spirituality, the needs of caregivers, and special concerns regarding the elderly. In its pages, readers will find out how to: effectively utilize palliative-care services and activate timely referral to hospice, arrange for care that takes into account patients’ cultural beliefs, and respond to spiritual and psychological distress, including the loss of hope that often overshadows physical suffering. The authors especially emphasize palliative care and hospice, since some physicians fear that such referrals may be viewed by patients and families as abandonment. They also address ethical and legal risks in pain management and warn that fear of overprescribing pain medication may inadvertently lead to ineffective pain relief and even place the treating team at risk of liability for undertreatment of pain. While physicians have the ability to treat disease, they also help to determine the time and place of death, and they must recognize that end-of-life choices are made more complex than ever before by advances in medicine and at the same time increasingly important. Care of the Dying Patient addresses some of the challenges frequently confronted in terminal care and points the way toward a more compassionate way of death.
When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an "overtreated" dying is feared, untreated pain or emotional abandonment are equally frightening. Approaching Death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decisionmakers that address specific barriers to achieving good care. This volume offers a profile of when, where, and how Americans die. It examines the dimensions of caring at the end of life: Determining diagnosis and prognosis and communicating these to patient and family. Establishing clinical and personal goals. Matching physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances. Approaching Death considers the dying experience in hospitals, nursing homes, and other settings and the role of interdisciplinary teams and managed care. It offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues such as assisted suicide. The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done."
A Field Manual for Palliative Care in Humanitarian Crises represents the first-ever effort at educating and providing guidance for clinicians not formally trained in palliative care in how to incorporate its principles into their work in crisis situations. A Field Manual for Palliative Care in Humanitarian Crises represents the first-ever effort at educating and providing guidance for clinicians not formally trained in palliative care in how to incorporate its principles into their work in crisis situations.
The new edition of this successful book has been up-dated to incorporate recent advances in both approach to, and treatment of, the terminally ill. Based on many years of monitoring clinical practice and research at St Christopher's Hospice, Dame Cicely Saunders presents practical, balanced advice on the general ethical and medical principles of caring for dying patients. This will continue to be an invaluable handbook for all hospice physicians and nurses as a compassionate source of factual information.
Revised edition of the best-selling memoir that has been read by over a million people worldwide with translations in 29 languages. After too many years of unfulfilling work, Bronnie Ware began searching for a job with heart. Despite having no formal qualifications or previous experience in the field, she found herself working in palliative care. During the time she spent tending to those who were dying, Bronnie's life was transformed. Later, she wrote an Internet blog post, outlining the most common regrets that the people she had cared for had expressed. The post gained so much momentum that it was viewed by more than three million readers worldwide in its first year. At the request of many, Bronnie subsequently wrote a book, The Top Five Regrets of the Dying, to share her story. Bronnie has had a colourful and diverse life. By applying the lessons of those nearing their death to her own life, she developed an understanding that it is possible for everyone, if we make the right choices, to die with peace of mind. In this revised edition of the best-selling memoir that has been read by over a million people worldwide, with translations in 29 languages, Bronnie expresses how significant these regrets are and how we can positively address these issues while we still have the time. The Top Five Regrets of the Dying gives hope for a better world. It is a courageous, life-changing book that will leave you feeling more compassionate and inspired to live the life you are truly here to live.
This “comforting…thoughtful” (The Washington Post) guide to maintaining a high quality of life—from resilient old age to the first inklings of a serious illness to the final breath—by the New York Times bestselling author of Knocking on Heaven’s Door is a “roadmap to the end that combines medical, practical, and spiritual guidance” (The Boston Globe). “A common sense path to define what a ‘good’ death looks like” (USA TODAY), The Art of Dying Well is about living as well as possible for as long as possible and adapting successfully to change. Packed with extraordinarily helpful insights and inspiring true stories, award-winning journalist Katy Butler shows how to thrive in later life (even when coping with a chronic medical condition), how to get the best from our health system, and how to make your own “good death” more likely. Butler explains how to successfully age in place, why to pick a younger doctor and how to have an honest conversation with them, when not to call 911, and how to make your death a sacred rite of passage rather than a medical event. This handbook of preparations—practical, communal, physical, and spiritual—will help you make the most of your remaining time, be it decades, years, or months. Based on Butler’s experience caring for aging parents, and hundreds of interviews with people who have successfully navigated our fragmented health system and helped their loved ones have good deaths, The Art of Dying Well also draws on the expertise of national leaders in family medicine, palliative care, geriatrics, oncology, and hospice. This “empowering guide clearly outlines the steps necessary to prepare for a beautiful death without fear” (Shelf Awareness).
From Ira Byock, prominent palliative care physician and expert in end of life decisions, a lesson in Dying Well. Nobody should have to die in pain. Nobody should have to die alone. This is Ira Byock's dream, and he is dedicating his life to making it come true. Dying Well brings us to the homes and bedsides of families with whom Dr. Byock has worked, telling stories of love and reconciliation in the face of tragedy, pain, medical drama, and conflict. Through the true stories of patients, he shows us that a lot of important emotional work can be accomplished in the final months, weeks, and even days of life. It is a companion for families, showing them how to deal with doctors, how to talk to loved ones—and how to make the end of life as meaningful and enriching as the beginning. Ira Byock is also the author of The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life.
This book introduces a process-based, patient-centered approach to palliative care that substantiates an indication-oriented treatment and radical reconsideration of our transition to death. Drawing on decades of work with terminally ill cancer patients and a trove of research on near-death experiences, Monika Renz encourages practitioners to not only safeguard patients' dignity as they die but also take stock of their verbal, nonverbal, and metaphorical cues as they progress, helping to personalize treatment and realize a more peaceful death. Renz divides dying into three parts: pre-transition, transition, and post-transition. As we die, all egoism and ego-centered perception fall away, bringing us to another state of consciousness, a different register of sensitivity, and an alternative dimension of spiritual connectedness. As patients pass through these stages, they offer nonverbal signals that indicate their gradual withdrawal from everyday consciousness. This transformation explains why emotional and spiritual issues become enhanced during the dying process. Relatives and practitioners are often deeply impressed and feel a sense of awe. Fear and struggle shift to trust and peace; denial melts into acceptance. At first, family problems and the need for reconciliation are urgent, but gradually these concerns fade. By delineating these processes, Renz helps practitioners grow more cognizant of the changing emotions and symptoms of the patients under their care, enabling them to respond with the utmost respect for their patients' dignity.