Download or read book Dying in America written by Institute of Medicine and published by National Academies Press. This book was released on 2015-03-19 with total page 470 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Download or read book Pediatric Palliative Care written by Betty Ferrell and published by . This book was released on 2016 with total page 161 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Download or read book The Private Worlds of Dying Children written by Myra Bluebond-Langner and published by Princeton University Press. This book was released on 2020-05-05 with total page 298 pages. Available in PDF, EPUB and Kindle. Book excerpt: Winner of the Margaret Mead Award A classic, moving study of terminally ill children that emphasizes their agency and shows how we can relate to dying children more honestly “The death of a child,” writes Myra Bluebond-Langner, “poignantly underlines the impact of social and cultural factors on the way that we die and the way that we permit others to die.” In a moving drama constructed from her observations of leukemic children, aged three to nine, in a hospital ward, she shows how the children come to know they are dying, how and why they attempt to conceal this knowledge from their parents and the medical staff, and how these adults in turn try to conceal from the children their awareness of the child’s impending death. In contrast to many parents, doctors, nurses, and social scientists who regard the children as passive recipients of adult actions, Bluebond-Langner emphasizes the children’s role in initiating and maintaining the social order. Her sensitive and stirring portrait shows the children to be willful, purposeful individuals capable of creating their own worlds. The result suggests better ways of relating to dying children and enriches our understanding of the ritual behavior surrounding death.

Download or read book When Your Child Is Sick written by Joanna Breyer and published by Penguin. This book was released on 2018-06-26 with total page 450 pages. Available in PDF, EPUB and Kindle. Book excerpt: An invaluable reference for parents of sick or hospitalized children by an experienced psychosocial counselor. To many parents, it is hard to imagine a more upsetting reality than one where their child is hospitalized, severely sick, or terminally ill. In When Your Child is Sick, psychosocial counselor Joanna Breyer distills decades of experience working with sick children and their families into a comprehensive guide for navigating the uncharted and frightening terrain. She provides expert advice to guide them through the hospital setting, at-home care, and long-term outcomes. Breyer's actionable techniques and direct advice will help parents feel more in-control of a circumstance that has upended their life. She alerts parents to key personnel in the hospital, gives dialogue prompts to help parents ask for the help they need, addresses the needs of their other children at home, offers advice on how to best utilize friends and family who want to help, includes stories from other families who have been there, and teaches coping techniques to help both parents and children weather the stress of prolonged illness and even death. When Your Child is Sick is a valuable guide to managing the myriad practical and emotional complications of an impossible situation.

Download or read book Dignity Therapy written by Harvey Max Chochinov and published by OUP USA. This book was released on 2012-01-04 with total page 216 pages. Available in PDF, EPUB and Kindle. Book excerpt: Maintaining dignity for patients approaching death is a core principle of palliative care. Dignity therapy, a psychological intervention developed by Dr. Harvey Max Chochinov and his internationally lauded research group, has been designed specifically to address many of the psychological, existential, and spiritual challenges that patients and their families face as they grapple with the reality of life drawing to a close. In the first book to lay out the blueprint for this unique and meaningful intervention, Chochinov addresses one of the most important dimensions of being human. Being alive means being vulnerable and mortal; he argues that dignity therapy offers a way to preserve meaning and hope for patients approaching death. With history and foundations of dignity in care, and step by step guidance for readers interested in implementing the program, this volume illuminates how dignity therapy can change end-of-life experience for those about to die - and for those who will grieve their passing.

Download or read book In the Shadow of Illness written by Myra Bluebond-Langner and published by Princeton University Press. This book was released on 2020-06-30 with total page 321 pages. Available in PDF, EPUB and Kindle. Book excerpt: A revealing account of how families adapt to living with a chronically ill child What is it like to live with a child who has a chronic, life-threatening disease? What impact does the illness have on well siblings in the family? Myra Bluebond-Langner suggests that understanding the impact of the illness lies not in identifying deficiencies in the lives of those affected, but in appreciating how family members carry on with their lives in the face of the disease's intrusion. The Private Worlds of Dying Children, Bluebond-Langner's previous book, now considered a classic in the field, explored the world of terminally ill children. In her new book, she turns her attention to the lives of those who live in the shadow of chronic illness: the parents and well siblings of children who have cystic fibrosis. Through a series of narrative portraits, she draws us into the daily lives of nine families of children at different points in the natural history of the illness—from diagnosis through the terminal phase. In these portraits, as family members talk about their experiences in their own words, we see how parents, well siblings, and the ill children themselves struggle, in different ways, to contain the intrusion of the disease into their lives. Bluebond-Langner looks at how parents adjust their priorities and their idea of what constitutes a normal life, how they try to balance the needs of other family members while caring for the ill child, and how they see the future. This context helps us understand how well siblings view the illness and how they relate to their ill sibling and parents. Since the issues raised are not unique to cystic fibrosis but are common to other chronic and life-threatening illnesses, this book will be of interest to all who study, care for, or live with the seriously ill.

Download or read book Interdisciplinary Pediatric Palliative Care written by Joanne Wolfe and published by Oxford University Press. This book was released on 2022-01-11 with total page 625 pages. Available in PDF, EPUB and Kindle. Book excerpt: Interdisciplinary Pediatric Palliative Care provides a uniquely integrated, comprehensive resource about palliative care for seriously ill children and their families. The field of palliative care is based on the fundamental principle that an interdisciplinary team is optimal in caring for patients and their families throughout the illness trajectory. The text integrates themes including goals of care, discipline-specific roles, cultural and spiritual considerations, evidence-based outcomes, and far more. It emphasizes the value of words and high-quality communication in palliative care. Importantly, content acknowledges challenging periods between team members, and how those can ultimately benefit team, patient, and family care outcomes. Each chapter includes the perspective of the family of a seriously ill child in the form of a vignette to promote care team understanding of this crucial perspective. This second edition is founded on a wealth of evidence that reflects the innovations in pediatric palliative care science over the past 10 years, including initiatives in clinical care, research, and education. Interdisciplinary Pediatric Palliative Care is appropriate for all pediatric palliative clinicians (PPC), including physicians, nurses, psychosocial clinicians, chaplains, and many others. All subspecialists who deliver care to seriously ill children, will find this book a must-have for their work. Advance Praise for Interdisciplinary Pediatric Palliative Care, Second Edition "This new edition is as much a testament to pediatric palliative care's remarkable evolution as a field as it is a quintessential playbook for providing the high-quality holistic and compassionate care that families with seriously ill children desperately want. Every page thoughtfully weaves together how interprofessional teams can contribute collaboratively to learning about and supporting the preferences, needs and priorities of the precious patients and families in their circle of care. It is a must read for all practitioners to enhance their palliative care understanding, appreciation and ability as a foundation for optimizing quality of life in practice." - Rebecca Kirch, JD, Executive Vice President of Policy and Programs, National Patient Advocate Foundation "This book offers a truly contemporary and comprehensive view of the entire field of pediatric palliative care. The focus on social determinants of health, cultural humility, and disparities in care could not be timelier, and the section highlighting conflict and conflict resolution should be required reading. The continued and purposeful inclusion of interdisciplinary clinicians in producing each chapter models the palliative care team itself-an approach in which all voices are necessary as we seek to provide the most compassionate care possible." - Rachel Thienprayoon, MD, MSCS, FAAP, FAAHPM, Associate Professor of Anesthesia, Medical Director, StarShine Hospice and Palliative Care, Cincinnati Children's Hospital Medical Center

Download or read book As Big as it Gets written by Julie A. Stokes and published by . This book was released on 2007 with total page 48 pages. Available in PDF, EPUB and Kindle. Book excerpt: Provides advice to parents with a serious illness on how to support their child through their illness. Includes ideas for conversations and activities that will help a child feel resilient, strong and confident enough to share their feelings when a parent is seriously ill.

Download or read book Oxford Textbook of Palliative Care for Children written by Richard Hain and published by Oxford University Press. This book was released on 2021-03-24 with total page 535 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Download or read book Ethics Conflict and Medical Treatment for Children E Book written by Dominic Wilkinson and published by Elsevier Health Sciences. This book was released on 2018-08-05 with total page 190 pages. Available in PDF, EPUB and Kindle. Book excerpt: What should happen when doctors and parents disagree about what would be best for a child? When should courts become involved? Should life support be stopped against parents' wishes? The case of Charlie Gard, reached global attention in 2017. It led to widespread debate about the ethics of disagreements between doctors and parents, about the place of the law in such disputes, and about the variation in approach between different parts of the world. In this book, medical ethicists Dominic Wilkinson and Julian Savulescu critically examine the ethical questions at the heart of disputes about medical treatment for children. They use the Gard case as a springboard to a wider discussion about the rights of parents, the harms of treatment, and the vital issue of limited resources. They discuss other prominent UK and international cases of disagreement and conflict. From opposite sides of the debate Wilkinson and Savulescu provocatively outline the strongest arguments in favour of and against treatment. They analyse some of the distinctive and challenging features of treatment disputes in the 21st century and argue that disagreement about controversial ethical questions is both inevitable and desirable. They outline a series of lessons from the Gard case and propose a radical new 'dissensus' framework for future cases of disagreement. - This new book critically examines the core ethical questions at the heart of disputes about medical treatment for children. - The contents review prominent cases of disagreement from the UK and internationally and analyse some of the distinctive and challenging features around treatment disputes in the 21st century. - The book proposes a radical new framework for future cases of disagreement around the care of gravely ill people.

Download or read book A Different Dream for My Child written by Jolene Philo and published by . This book was released on 2009 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Devotional meditations for parents of critically or chronically ill children.Author Jolene Philo shares lessons from her own life, as well as the stories of other parents.

Download or read book Drawings from a Dying Child written by Judi Bertoia and published by Routledge. This book was released on 2013-04-15 with total page 213 pages. Available in PDF, EPUB and Kindle. Book excerpt: Drawings from a Dying Child concerns a young girl, Rachel, terminally ill with leukaemia. The book describes a series of drawings she made and shows how they reveal her inner experience, how she became fully aware that she was dying and even came to accept death. The result is a moving and informative story that will be invaluable to caregivers and families with a dying child. It provides new understanding of the experience of a dying child and suggests practical strategies for coping.

Download or read book On Children and Death written by Elisabeth Kübler-Ross and published by Simon and Schuster. This book was released on 2011-07-26 with total page 292 pages. Available in PDF, EPUB and Kindle. Book excerpt: On Children and Death is a major addition to the classic works of Elisabeth Kübler-Ross, whose On Death and Dying and Living with Death and Dying have been continuing sources of strength and solace for tens of millions of devoted readers worldwide. Based on a decade of working with dying children, this compassionate book offers the families of dead and dying children the help -- and hope -- they need to survive. In warm, simple language, Dr. Kübler-Ross speaks directly to the fears, doubts, anger, confusion, and anguish of parents confronting the terminal illness or sudden death of a child.

Download or read book Care of the Dying Child written by Ann Goldman and published by . This book was released on 1994 with total page 232 pages. Available in PDF, EPUB and Kindle. Book excerpt: This unique book considers the specific medical, psycho-social, and practical issues involved in caring for children dying from chronic diseases. Ann Goldman, herself a consultant paediatrician in palliative care at the Hospital for Sick Children, Great Ormond Street, recognizes the special needs of terminally ill children and their families. She confronts the problems and issues surrounding the care of these children in order to help paediatricians and other professionals provide the very best possible care for such patients. A range of contributors experienced in palliative care for children provide comprehensive coverage of the subject, including: consideration of the magnitude of the problem and the provision of services, pain control symptom management, family support and communication with children, spiritual issues, bereavement, stress. This practical, interdisciplinary approach to the specific needs of children with terminal diseases will be invaluable for every professional who wishes to enhance standards of care for dying children and their families.

Download or read book Improving Palliative Care for Cancer written by National Research Council and published by National Academies Press. This book was released on 2001-10-19 with total page 344 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Download or read book Shelter From The Storm written by Joanne Hilden and published by Da Capo Lifelong Books. This book was released on 2003 with total page 242 pages. Available in PDF, EPUB and Kindle. Book excerpt: A wise and compassionate guide to caring for a critically ill child.

Download or read book Supporting the Child and the Family in Paediatric Palliative Care written by Erica Brown and published by Jessica Kingsley Publishers. This book was released on 2007-06-15 with total page 306 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.