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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.
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.
An updated edition of the most respected book on hospice care—for both patients and caregivers. This warm and informative resource on hospice and other end-of-life care options now gets an update. It receives a new preface and revised guidance on elders who need more long-term care and support, recommendations on pain medications, and advice for those living extended lives with treatable, but not curable, diseases. Written by a hospice nurse, Living at the End of Life reassures us that this difficult time also offers an opportunity to explore and rediscover a richer meaning in life. Drawing on her years of experience, Bell has created a comprehensive, insightful guide to every aspect of hospice care and the final stages of life. For people in hospice, as well as their friends and families, this is an indispensable and trustworthy source of comfort and spiritual healing.
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."
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 second edition provides the most up-to-date information on all aspects of palliative care including recent developments (including COVID-19), global policies, service provision, symptom management, professional aspects, organization of services, palliative care for specific populations, palliative care emergencies, ethical issues in palliative care, research in palliative care, public health approaches and financial aspects of care. This new Textbook of Palliative Care remains a unique, comprehensive, clinically relevant and state-of-the art book, aimed at advancing palliative care as a science, a clinical practice and as an art. Palliative care has been part of healthcare for over fifty years but we still needs to be explained. Healthcare education and training has been slow to recognize the vital importance of ensuring that all practitioners have a good understanding of what is involved in the care of people with serious or advanced illnesses and theirfamilies. However, the science of palliative care is advancing and this new edition will contribute to a better understanding of this specialty. This new edition offers 20 new chapters out of over 120, written by experts in their given fields provide up-to-date information on a wide range of topics of relevance to those providing care towards the end of life no matter what the disease may be. We present a global perspective on contemporary and classic issues in palliative care with authors from a wide range of disciplines involved in this essential aspect of care. The Textbook includes sections addressing aspects such as symptom management and care provision, organization of care in different settings, care in specific disease groups, palliative care emergencies, ethics, public health approaches and research in palliative care. This new Textbook will be of value to practitioners in all disciplines and professions where the care of people approaching death is important, specialists as well as non-specialists, in any setting where people with serious advanced illnesses are residing. It is also an important resource for researchers, policy-and decision-makers at national or regional levels. Neither the science nor the art of palliative care will stand still so the Editors and contributors from all over the world aim to keep this Textbook updated so that the reader can find new evidence and approaches to care.
This book is about how, when, and why our dead visit us. Allan Kellehear--a medical sociologist and expert on death, dying, and palliative care--has gathered data and conducted studies on deathbed visions across cultures.
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.
What should medicine do when it can’t save your life? The modern healthcare system has become proficient at staving off death with aggressive interventions. And yet, eventually everyone dies—and although most Americans say they would prefer to die peacefully at home, more than half of all deaths take place in hospitals or health care facilities. At the End of Life—the latest collaborative book project between the Creative Nonfiction Foundation and the Jewish Healthcare Foundation—tackles this conundrum head on. Featuring twenty-two compelling personal-medical narratives, the collection explores death, dying and palliative care, and highlights current features, flaws and advances in the healthcare system. Here, a poet and former hospice worker reflects on death’s mysteries; a son wanders the halls of his mother’s nursing home, lost in the small absurdities of the place; a grief counselor struggles with losing his own grandfather; a medical intern traces the origins and meaning of time; a mother anguishes over her decision to turn off her daughter’s life support and allow her organs to be harvested; and a nurse remembers many of her former patients. These original, compelling personal narratives reveal the inner workings of hospitals, homes and hospices where patients, their doctors and their loved ones all battle to hang on—and to let go.
Nursing Care at the End of Life: Palliative Care for Patients and Families explores the deep issues of caring for the dying and suffering. The book is based on the Hospice Family Caregiving Model previously published by the author and focuses on the practice implications of care for the dying. The book is written in a clear and user-friendly style, and is ideal for undergraduate nursing students learning about dying, suffering, and caring for individuals and their families.