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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."
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.
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.
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.
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.
Among the issues confronting America is long-term care for frail, older persons and others with chronic conditions and functional limitations that limit their ability to care for themselves. Improving the Quality of Long-Term Care takes a comprehensive look at the quality of care and quality of life in long-term care, including nursing homes, home health agencies, residential care facilities, family members and a variety of others. This book describes the current state of long-term care, identifying problem areas and offering recommendations for federal and state policymakers. Who uses long-term care? How have the characteristics of this population changed over time? What paths do people follow in long term care? The committee provides the latest information on these and other key questions. This book explores strengths and limitations of available data and research literature especially for settings other than nursing homes, on methods to measure, oversee, and improve the quality of long-term care. The committee makes recommendations on setting and enforcing standards of care, strengthening the caregiving workforce, reimbursement issues, and expanding the knowledge base to guide organizational and individual caregivers in improving the quality of care.
Palliative care provides comprehensive support for severely affected patients with any life-limiting or life-threatening diagnosis. To do this effectively, it requires a disease-specific approach as the patients’ needs and clinical context will vary depending on the underlying diagnosis. Experts in the field of palliative care and oncology describe in detail the needs of patients with advanced cancer in comparison to those with non-cancer disease and also identify the requirements of patients with different cancer entities. Basic principles of symptom control are explained, with careful attention to therapy for pain associated with either the cancer or its treatment and to symptom-guided antineoplastic therapy. Complex therapeutic strategies for palliative cancer patients are highlighted that involve both cancer- and symptom-directed options and address a range of therapeutic aims. Issues relating to drug use in palliative cancer care are fully explored, and a separate section is devoted to care in the final phase. A range of organizational and policy issues are also discussed, and the book concludes by considering likely future developments in palliative care for cancer patients. Palliative Care in Oncology will be of particular interest to palliative care physicians who are interested in broadening the scope of their disease-specific knowledge, as well as to oncologists who wish to learn more about modern palliative care concepts relevant to their day-to-day work with cancer patients.
Originally published as a series of articles in Missouri medicine.
This comprehensive guide thoroughly covers all aspects of neuropalliative care, from symptom-specific considerations, to improving communication between clinicians, patients and families. Neuropalliative Care: A Guide to Improving the Lives of Patients and Families Affected by Neurologic Disease addresses clinical considerations for diseases such as dementia, multiple sclerosis, and severe acute brain injury, as well discussing the other challenges facing palliative care patients that are not currently sufficiently met under current models of care. This includes methods of effective communication, supporting the caregiver, how to make difficult treatment decisions in the face of uncertainty, managing grief, guilt and anger, and treating the pain itself. Written by leaders in the field of neuropalliative care, this book is an exceptional, well-rounded resource of neuropalliative care, serving as a reference for all clinicians caring for patients with neurological disease and their families: neurologists and palliative care specialists, physicians, nurses, chaplains, social workers, as well as trainees in these areas.
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.