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.
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.
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.
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.
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.
Pediatric Palliative Care: A Model for Exemplary Practice lays out a road map for health-care providers interested in optimizing care for seriously ill children and their families. Grounded in clinical practice and the study of positive rather than problematic encounters between providers and parents, the book presents an evidence-based model of exemplary interaction. The chapters offer a clear understanding of the complex, holistic process of interaction between providers and parents, as well as the personal and professional knowledge and skills needed to interact in optimal ways. This is a one-of-a-kind guidebook for health-care providers interested in (re)discovering how to maximize positive outcomes for both families and providers. It is also a valuable source of inspiration for educators, supervisors, and hospital administrators who want to facilitate personal and professional development and create supportive environments for students, providers, seriously ill children, and their families.
The Textbook of Interdisciplinary Pediatric Palliative Care, by Drs. Joanne Wolfe, Pamela Hinds, and Barbara Sourkes, aims to inform interdisciplinary teams about palliative care of children with life-threatening illness. It addresses critical domains such as language and communication, symptoms and quality of life, and the spectrum of life-threatening illnesses in great depth. This comprehensive product takes a first-of-its-kind team approach to the unique needs of critically ill children. It shows how a collaborative, interdisciplinary care strategy benefits patients and their families. If you deal with the complex care of critically ill children, this reference provides a uniquely integrated perspective on complete and effective care. Respect interdisciplinary perspectives, and provide the most comprehensive care. Use an integrated approach to address the physical, psychological, social, and spiritual needs of children and their families. Understand and heed your strengths and vulnerabilities in order to provide the best care for your patients. Recognize the necessity of linking hospital-based palliative care with community resources. Implement consistent terminology for use by the entire palliative care team. Access the full text online with regular updates and supplemental text and image resources.
The importance of palliative care for children facing life threatening illness and their families is now widely acknowledged as an essential part of care, which should be available to all children and families, throughout the child's illness and at the end of life. The new edition of the Oxford Textbook of Palliative Care for Children brings together the most up to date information, current knowledge, evidence, and developments of clinical practice in the field. The book is structured into four sections. 'Foundations of Care' describes core issues, the foundations on which paediatric palliative care is based. 'Child and Family Care' looks at different aspects of psychological, social, and cultural care for the sick child or young person, and their family. These chapters cover the time course of the illness, around the time of death and support for the bereaved family. 'Symptom Care' focuses on the uses of medication, specific symptoms, and their management. Finally, 'Delivery of Care' examines practical approaches to care in different environments and the needs of clinicians. Two new editors join the team from Canada and South Africa, reflecting our aims to contribute towards the development of care for children across the world, and to be a resource for both experienced clinicians and those new to the field. Comprehensive in scope, exhaustive in detail, and definitive in authority, this third edition has been thoroughly updated to cover new practices, current epidemiological data, and the evolving models that support the delivery of palliative medicine to children. This includes two new chapters, looking in detail at 'Decision Making' and 'Perinatal Care', and a new section highlighting the emerging importance of 'Palliative Care for Children in Humanitarian Crises'. This book is an essential resource for anyone who works with children worldwide.
When a child has to say good-bye to someone she loves, the process can be easier with a friend at her side. Join Scarlet, her best friend Elby, and the critter gang as they say good-bye to someone Scarlet loves. Follow them as they learn about hospice services and do some activities along the way. This beautifully illustrated, hardcover edition will become a treasured family keepsake. Use it to remember your child's thoughts and save it to share years later. Includes a story about Scarlet, activities, journal page, and place to write a letter to a loved one. This book won a ClearMark Award and the Mom's Choice Awards Gold.
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.