Dying in America


Book Description

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.




Approaching Death


Book Description

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."




Improving Palliative Care for Cancer


Book Description

In our society's aggressive pursuit of cures for cancer, we have neglected symptom control and comfort care. Less than one percent of the National Cancer Institute's budget is spent on any aspect of palliative care research or education, despite the half million people who die of cancer each year and the larger number living with cancer and its symptoms. Improving Palliative Care for Cancer examines the barriersâ€"scientific, policy, and socialâ€"that keep those in need from getting good palliative care. It goes on to recommend public- and private-sector actions that would lead to the development of more effective palliative interventions; better information about currently used interventions; and greater knowledge about, and access to, palliative care for all those with cancer who would benefit from it.




When Children Die


Book Description

The death of a child is a special sorrow. No matter the circumstances, a child's death is a life-altering experience. Except for the child who dies suddenly and without forewarning, physicians, nurses, and other medical personnel usually play a central role in the lives of children who die and their families. At best, these professionals will exemplify "medicine with a heart." At worst, families' encounters with the health care system will leave them with enduring painful memories, anger, and regrets. When Children Die examines what we know about the needs of these children and their families, the extent to which such needs areâ€"and are notâ€"being met, and what can be done to provide more competent, compassionate, and consistent care. The book offers recommendations for involving child patients in treatment decisions, communicating with parents, strengthening the organization and delivery of services, developing support programs for bereaved families, improving public and private insurance, training health professionals, and more. It argues that taking these steps will improve the care of children who survive as well as those who do notâ€"and will likewise help all families who suffer with their seriously ill or injured child. Featuring illustrative case histories, the book discusses patterns of childhood death and explores the basic elements of physical, emotional, spiritual, and practical care for children and families experiencing a child's life-threatening illness or injury.




Textbook of Palliative Care


Book Description

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.




Dying Well


Book Description

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.




The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life


Book Description

This major new work updates and significantly expands The Hastings Center's 1987 Guidelines on the Termination of Life-Sustaining Treatment and Care of the Dying. Like its predecessor, this second edition will shape the ethical and legal framework for decision-making on treatment and end-of-life care in the United States. This groundbreaking work incorporates 25 years of research and innovation in clinical care, law, and policy. It is written for physicians, nurses, and other health care professionals and is structured for easy reference in difficult clinical situations. It supports the work of clinical ethicists, ethics committee members, health lawyers, clinical educators, scholars, and policymakers. It includes extensive practical recommendations. Health care reform places a new set of challenges on decision-making and care near the end of life. The Hastings Center Guidelines are an essential resource.




The Art of Dying Well


Book Description

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).




Care of the Dying Patient


Book Description

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.




Dignity Therapy


Book Description

Maintaining dignity for patients approaching death is a core principle of palliative care. Dignity therapy, a psychological intervention developed by Dr. Harvey Max Chochinov and his internationally lauded research group, has been designed specifically to address many of the psychological, existential, and spiritual challenges that patients and their families face as they grapple with the reality of life drawing to a close. In the first book to lay out the blueprint for this unique and meaningful intervention, Chochinov addresses one of the most important dimensions of being human. Being alive means being vulnerable and mortal; he argues that dignity therapy offers a way to preserve meaning and hope for patients approaching death. With history and foundations of dignity in care, and step by step guidance for readers interested in implementing the program, this volume illuminates how dignity therapy can change end-of-life experience for those about to die - and for those who will grieve their passing.