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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.
As a society, we have made amazing gains in being able to detect and treat cancer. Even so, about half the people who are told by their doctors that they have cancer will die within a few years. This means that every year about one million people find out that they have cancer and are treated, and about one-half million people die of cancer nationwide. So far, most cancer research and treatment has focused on trying to cure cancer. There hasn't been much attention paid to other important issues, such as pain control and taking care of other troubling symptoms. Now more and more people are aware that there are cancer care needs beyond just trying to cure it. Attention is now being paid to helping people with cancer cope better with the problems that may arise when people are being treated or as they approach death.
Improving care for the patients who are in the last phase of their lives has been a field that most health care providers have struggled with during last few years. Having worked with hundreds of providers throughout the country, these experienced authors know what providers need when it comes to implementing a quality improvement project. This guide will provide user-friendly, step-by-step instructions on how to implement a quality improvement project in the full range of care settings. The instructions will be brought to life with specific examples from actual successful projects and key information on the best practices in the industry. Readers will also be pointed to resources available online and elsewhere, with information on how to access them. The guide will be written in an informal, maximally helpful style, with checklists, tables, and boxed information. Answering 80% of the questions in less than half the space, The Common Sense Guide is the perfect portable companion to Dr. Lynn's desk reference, Improving Care for the End of Life. The book will be of great interest to all health care professionals involved in the care of those with serious chronic illness -- doctors, nurses, social workers, chaplains, clinic administrators, quality improvement experts, and so forth.
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.
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 document is a brief summary of the Institute of Medicine report entitled When Children Die: Improving Palliative and End-of-Life Care for Children. Better care is possible now, but current methods of organizing and financing palliative, end-of-life, and bereavement care complicate the provision and coordination of services to help children and families and sometimes require families to choose between curative or life-prolonging care and palliative services, in particular, hospice care. Inadequate data and scientific knowledge impede efforts to deliver effective care, educate professionals to provide such care, and design supportive public policies. Integrating effective palliative care from the time a child's life-threatening medical problem is diagnosed will improve care for children who survive as well as children who die-and will help the families of all these children. The report recognizes that while much can be done now to support children and families, much more needs to be learned. The analysis and recommendations reflect current knowledge and judgments, but new research and insights will undoubtedly suggest modifications and shifts in emphasis in future years.
This title is directed primarily towards health care professionals outside of the United States. Content has been thoroughly revised and updated in line with changes in practice and policy both locally and internationally, particularly the UK NICE guidance on Supportive and palliative care for people with cancer and the Care of the Dying Pathway. It reflects the rapid development of palliative nursing as an emerging specialty. It helps in the process of defining palliative nursing and how it interfaces with other disciplines within the specialty. The text is divided into three sections and comprehensively, yet sensitively, covers all aspects of palliative nursing. Key themes covered include pain control, symptom control, loss and grief, and handling loss. . A strong emphasis is placed on the integration of theory and practice and evidence based care. . Reconciliation of the theory and practice is achieved by the use of case studies. . It addresses malignant and non-malignant palliative care. . Research and extensive literature support each chapter. Content has been thoroughly revised and updated in line with changes in practice and policy both locally and internationally, particularly the UK NICE guidance on Supportive and palliative care for people with cancer and the Care of the Dying Pathway . Three new chapters on: . Sexuality . Care of the Dying Pathway . Changing roles of the nurse in palliative care . New appendix on North American drug names equivalents for the international market
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.
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.
It is innately human to comfort and provide care to those suffering from cancer, particularly those close to death. Yet what seems self-evident at an individual, personal level has, by and large, not guided policy at the level of institutions in this country. There is no argument that palliative care should be integrated into cancer care from diagnosis to death. But significant barriers-attitudinal, behavioral, economic, educational, and legal-still limit access to care for a large proportion of those dying from cancer, and in spite of tremendous scientific opportunities for medical progress against all the major symptoms associated with cancer and cancer death, public research institutions have not responded. In accepting a single-minded focus on research toward cure, we have inadvertently devalued the critical need to care for and support patients with advanced disease, and their families. This report builds on and takes forward an agenda set out by the 1997 IOM report Approaching Death: Improving Care at the End of Life, which came at a time when leaders in palliative care and related fields had already begun to air issues surrounding care of the dying. That report identified significant gaps in knowledge about care at the end of life and the need for serious attention from biomedical, social science, and health services researchers. Most importantly, it recognized that the impediments to good care could be identified and potentially remedied. The report itself catalyzed further public involvement in specific initiatives-mostly pilot and demonstration projects and programs funded by the nonprofit foundation community, which are now coming to fruition.