There has been a steady growth in the provision of day care services for people with life-threatening illnesses who live at home. This book includes details of the range of therapies and services that a multi-disciplinary team can provide to address the physical, emotional, psycho-social and spiritual needs of these patients and their families, thus enabling them to remain in their own homes.
Supporting the Child and the Family in Paediatric Palliative Care provides a comprehensive overview of good practice in caring for terminally-ill children, young people and their families. Drawing from extensive personal experiences of working in paediatric palliative care, the author provides guidance on issues including symptom management and pain relief; cultural, religious and spiritual aspects of care; and the role of education for life-limited children. Addressing the importance of individual needs, the book looks at emotional, social and cognitive support at different stages of the illness, how parents and professionals can respond to children's own questions about death, and the impact of life-limiting illness on the whole family - including grandparents and siblings. The material offers helpful suggestions on how to support families in making informed choices during distressing periods, such as where their child will die and how to prepare for the funeral. This book is a practical and invaluable tool for nurses, paediatricians, hospice care staff, bereavement counsellors and all those caring for life-limited children.
Children with life-threatening and terminal illnesses--and their families-- require a unique kind of care to meet a wide variety of needs. This book, the first edition of which won the 1993 Pediatric Nursing Book of the Year Award, provides an authoritative source for the many people involved in caring for dying children. It draws together contributions from leading authorities in a comprehensive, fully up-to-date resource, with an emphasis on practical topics that can be put to immediate use. The book covers the entire range of issues related to the hospice environment and is intended for all those who participate in the hospice-care process: physicians, nurses, social workers, teachers, clergy, family therapists, parents, and community service volunteers.
Taking as its focus a highly emotive area of study, The Dying Process draws on the experiences of daycare and hospice patients to provide a forceful new analysis of the period of decline prior to death. Placing the bodily realities of dying very firmly centre stage and questioning the ideology central to the modern hospice movement of enabling patients to 'live until they die', Julia Lawton shows how our concept of a 'good death' is open to interpretation. Her study examines the non-negotiable effects of a patient's bodily deterioration on their sense of self and, in so doing, offers a powerful new perspective in embodiment and emotion in death and dying. A detailed and subtle ethnographic study, The Dying Process engages with a range of deeply complex and ethically contentious issues surrounding the care of dying patients in hospices and elsewhere.
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.
Day care centres are growing important in palliative care, providing a variety of services from out-patient clinics to art therapy classes. They are proving to be a cost-effective way of providing care, and of accustomising patients to the hospice environment before full time admittance. They can also improve quality of life by giving patients and carers time away from one another. This book provides a comprehensive overview of the current philosophy, patterns and policies of pallaitive day care. It places emphasis on the need to evaluate performance in palliative day care and describes in detailk audit, health economics, research and their associated problems and pitfalls.
Symptom control, management of psychosocial and spiritual concerns, decision-making consistent with values and goals, and care of the imminently dying that is appropriate and sensitive are among the critical issues in palliative care. This book explores progress made and future goals.
The specialty of palliative care has traditionally grown out of oncology and there has been little research into the needs of patients dying from causes other than cancer. Few non-cancer patients receive hospice in-patient, home care or day care although a good proportion of hospices say that their services are available to non-cancer patients. As a result, the importance of palliative care for non-cancer patients is now being increasingly recognized internationally, and in the UK a committee reporting to the Department of Health recommended that palliative care should be accessible to all patients who need such care. Palliative Care for Non-Cancer Patients considers the needs and experiences of patients dying from, for example, stroke, heart disease or dementia by,drawing on a range of disciplines and specialties in medicine. The provision of palliative care for patients dying from causes other than cancer raises a number of important questions for policy makers and purchasers. This book summarizes what is known about the needs of and appropriate service provision for people dying of causes other than cancer and begins to set a research agenda.
There are few things requiring more expertise, delicacy, and compassion than caring for an infant, child, or young adult with a life-limiting condition. Written by leading researchers, clinicians from relevant disciplines, family members, and advocates, this practical guide provides professionals involved in pediatric palliative and end-of-life care with comprehensive information in a single volume. Thoroughly updated and expanded, this edition includes chapters addressing the unique challenges facing children with HIV/AIDS and their families, care in home and ICU settings, difficult decision-making processes, and the importance of communication with the child and family, as well as completely new chapters on spiritual dimensions of care and educational and advocacy initiatives. Intended for primary care physicians, pediatric practitioners and specialists, home care and hospice personnel, pastoral counselors, and affected families, the book includes useful resource and reference material and practical, hands-on tips. With contributions from an international group of expert educators, clinicians, and parents, this book takes a truly interdisciplinary approach to pediatric palliative care, presenting best practices, clear instruction, and the latest information and research for anyone involved in pediatric palliative and end-of-life care.
