Exploring the failure of hospice in America to care for patients and families at the end of life. Hospice is the dominant form of end-of-life care in the United States. But while the US hospice system provides many forms of treatment that are beneficial to dying people and their families, it does not encompass what is commonly referred to as long-term care, which includes help with the activities of daily living: feeding, bathing, general safety, and routine hygienic maintenance. Frequently, such care is carried out by an informal network of unpaid caregivers, such as the person's family or loved ones, who are often ill-prepared to offer this type of support. In The Crisis of US Hospice Care, Harold Braswell argues that the stress of providing long-term care typically overwhelms family members and that overdependence on familial caregiving constitutes a crisis of US hospice care that limits the freedom of dying people. Arguing for the need to focus on the time just before death, Braswell examines how the relationship of hospice to familial caregiving evolved. He traces the history of hospice over the past fifty years and describes the choice that people dying with inadequate familial support face between a neglectful home environment and an impersonal nursing home. A nuanced look at the personal and political dimensions that shape long-term, end-of-life care, this historical and ethnographic study demonstrates that the crisis in US hospice care can be alleviated only by establishing the centrality of hospice to American freedom. Providing a model for the transformative work that is required going forward, The Crisis of US Hospice Care illustrates the potential of hospice for facilitating a new way of living our last days and for having the best death possible.

A comprehensive review of grief and loss issues facing professionals and families due to the COVID-19 pandemic.

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."

Produced as a companion to the Hospice Foundation of America's fifth annual National Bereavement Teleconference, this volume examines how key aspects of identity affect how individuals grieve. Variables explored include culture, spirituality, age and development level, class and gender.

This book provides an unique resource for registered nurses working in hospice palliative care at home and for the community, outside of acute care settings and also incorporates literature related to palliative care in acute health care settings, as part of the overall services and supports required. Very few resources exist which specifically address hospice palliative care in the home setting, despite the fact that most palliative care occurs outside acute care settings and is primarily supported by unpaid family caregivers. An overview of the concerns for individuals and families, as well as specific nursing interventions, from all ages would be an excellent support for nursing students and practicing registered nurses alike. The book structure begins with a description of the goals and objectives of hospice palliative care and the nursing role in providing excellent supportive care. Chapters include research findings and specifically research completed by the authors in the areas of pediatric palliative care, palliative care for those with dementia, and the needs of family caregivers in bereavement. Interventions developed by the editors are provided in this book, such as the “Finding Balance Intervention” for bereaved caregivers; the “Reclaiming Yourself” tool for bereaved spouses of partners with dementia; and The Keeping Hope Possible Toolkit for families of children with life threatening and life limiting illnesses. The development and application of these theory-based interventions are also highlighted. Videos and vignettes written by family caregivers about what was helpful for them, provide a patient-and family-centered approach./div The book will benefit nursing students, educators and practicing registered nurses by providing information, theory, and evidence from research.

In this full length book with a new preface added, Barbara Karnes shares her insights and experiences gathered over decades of working with people during their final act of living. For both professionals and lay people, this book weaves personal stories with practical care guidelines, including: living with a life threatening illness, signs of the dying process, the stages of grief, living wills, and other end of life issues. The Final Act of Living: Reflections of a Long-Time Hospice Nurse is an end of life book; a resource that reads like a novel, yet has the content of a textbook.Barbara wrote this book following years of being a hospice nurse at the bedside of hundreds of people in the months to moments before death. From the stories and experiences she shares, you will see that death doesn't just happen, there is an unfolding; there is a process to dying. The Final Act of Living is used as:*A resource on end of life for palliative care nurses*A training handbook for hospice nurses and volunteers*A reference book for anyone working with end of life issues: Lay ministers, social workers, counselors, nurses, chaplains*An easy read for anyone interested in dying and grief*A text book in college and university classes, CNA training, social work and LPN/RN classesThis material may be described as an "end of life book" however, as the title states, its content and philosophy is all about The Final Act of Living.