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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.
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."
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.
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.
A doctor on the front lines of hospital care illuminates one of the most important and controversial social issues of our time. It is harder to die in this country than ever before. Though the vast majority of Americans would prefer to die at home—which hospice care provides—many of us spend our last days fearful and in pain in a healthcare system ruled by high-tech procedures and a philosophy to “fight disease and illness at all cost.” Dr. Ira Byock, one of the foremost palliative-care physicians in the country, argues that how we die represents a national crisis today. To ensure the best possible elder care, Dr. Byock explains we must not only remake our healthcare system but also move beyond our cultural aversion to thinking about death. The Best Care Possible is a compelling meditation on medicine and ethics told through page-turning life-or-death medical drama. It has the power to lead a new national conversation.
“This beautiful book, full of wisdom and warmth, teaches us how to protect and preserve our most valuable possessions—the relationships with those we love. It shows that the things that matter definitely aren’t ‘things,’ and how to empower your life in the right direction.” —Dr. Stephen R. Covey, author of The 7 Habits of Highly Effective People Four simple phrases—“Please forgive me,” “I forgive you,” “Thank you,” and “I love you”—carry enormous power to mend and nurture our relationships and inner lives. These four phrases and the sentiments they convey provide a path to emotional wellbeing, guiding us through interpersonal difficulties to life with integrity and grace. Newly updated with stories from people who have turned to this life-altering book in their time of need, this motivational teaching about what really matters reminds us how we can honor each relationship every day. Dr. Ira Byock, an international leader in palliative care, explains how we can practice these life-affirming words in our day-to-day lives. Too often we assume that the people we love really know that we love them. Dr. Byock demonstrates the value of “stating the obvious” and provides practical insights into the benefits of letting go of old grudges and toxic emotions. His stories help us to forgive, appreciate, love, and celebrate one another and live life more fully. Using the Four Things in a wide range of life situations, we can experience emotional healing even in the wake of family strife, personal tragedy, divorce, or in the face of death. With practical wisdom and spiritual power, The Four Things That Matter Most gives us the language and guidance to honor and experience what really matters most in our lives every day.
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.
Pediatric palliative care is a field of significant growth as health care systems recognize the benefits of palliative care in areas such as neonatal intensive care, pediatric ICU, and chronic pediatric illnesses. Pediatric Palliative Care, the fourth volume in the HPNA Palliative Nursing Manuals series, highlights key issues related to the field. Chapters address pediatric hospice, symptom management, pediatric pain, the neonatal intensive care unit, transitioning goals of care between the emergency department and intensive care unit, and grief and bereavement in pediatric palliative care. The content of the concise, clinically focused volumes in the HPNA Palliative Nursing Manuals series is one resource for nurses preparing for specialty certification exams and provides a quick-reference in daily practice. Plentiful tables and patient teaching points make these volumes useful resources for nurses.
This book discusses the common principles of morality and ethics derived from divinely endowed intuitive reason through the creation of al-fitr' a (nature) and human intellect (al-‘aql). Biomedical topics are presented and ethical issues related to topics such as genetic testing, assisted reproduction and organ transplantation are discussed. Whereas these natural sources are God’s special gifts to human beings, God’s revelation as given to the prophets is the supernatural source of divine guidance through which human communities have been guided at all times through history. The second part of the book concentrates on the objectives of Islamic religious practice – the maqa' sid – which include: Preservation of Faith, Preservation of Life, Preservation of Mind (intellect and reason), Preservation of Progeny (al-nasl) and Preservation of Property. Lastly, the third part of the book discusses selected topical issues, including abortion, assisted reproduction devices, genetics, organ transplantation, brain death and end-of-life aspects. For each topic, the current medical evidence is followed by a detailed discussion of the ethical issues involved.