Improving Palliative Care for Cancer

Improving Palliative Care for Cancer
Author: National Research Council
Publisher: National Academies Press
Total Pages: 344
Release: 2001-10-19
Genre: Medical
ISBN: 0309074029

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.

When Children Die

When Children Die
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 713
Release: 2003-02-09
Genre: Medical
ISBN: 0309084377

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.

Pediatric Palliative Care

Pediatric Palliative Care
Author: Betty Ferrell
Publisher:
Total Pages: 161
Release: 2016
Genre: Family & Relationships
ISBN: 0190244186

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.

Oxford Textbook of Palliative Care for Children

Oxford Textbook of Palliative Care for Children
Author: Ann Goldman
Publisher: Oxford University Press, USA
Total Pages: 516
Release: 2012-05-24
Genre: Medical
ISBN: 0199595100

Comprehensive in scope and definitive in authority, this second 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 book is an essential resource for anyone who works with children worldwide.

In the Shadow of Illness

In the Shadow of Illness
Author: Myra Bluebond-Langner
Publisher: Princeton University Press
Total Pages: 321
Release: 2020-06-30
Genre: Medical
ISBN: 0691214700

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.

The Private Worlds of Dying Children

The Private Worlds of Dying Children
Author: Myra Bluebond-Langner
Publisher: Princeton University Press
Total Pages: 298
Release: 2020-05-05
Genre: Social Science
ISBN: 0691213089

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.

Hospice Care for Children

Hospice Care for Children
Author: Ann Armstrong-Dailey
Publisher: Oxford University Press, USA
Total Pages: 442
Release: 2001
Genre: Medical
ISBN: 9780195133301

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.

Shelter From The Storm

Shelter From The Storm
Author: Joanne Hilden
Publisher: Da Capo Lifelong Books
Total Pages: 242
Release: 2003
Genre: Family & Relationships
ISBN: 0738205346

A wise and compassionate guide to caring for a critically ill child.