The first volume in the "What Do I Do Now?: Palliative Care" series, Pediatric Palliative Care uses a case-based palliative care approach to cover common and important topics in the examination, investigation, and management of children with serious illness. Each chapter provides a discussion of the diagnosis, key points to remember, and selected references for further reading. The book addresses a wide range of topics, including the goals of care, symptom management, care for neonatal and adolescent populations, and the emotional, social, cultural and spiritual needs of ill children and their families. Written by authors from a variety of fields such as nursing, chaplaincy, social work, and psychology, this book is suited for pediatricians, palliative care and hospice providers, nurses, and allied health practitioners. Pediatric Palliative Care is an engaging collection of thought-provoking cases which clinicians can utilize when they encounter difficult patients. The volume is also a self-assessment tool that tests the reader's ability to answer the question, "What do I do now?"

"We hope that the lives of all children will be filled with possibility, with open horizons and rainbows into the future. Children with serious illnesses, their families, and those who care for them, confront the realization that "not everything is possible," that despite dramatic scientific and medical advances, the lifespan of some children will be shortened. This threat of premature loss heightens the sense of time for children and families alike, and challenges clinicians to create new pathways of hope for them"--

This book is a printed edition of the Special Issue "Pediatric Palliative Care" that was published in Children

The first of its kind, this book describes pediatric palliative care in more than 23 countries. Each region in the world is covered and countries included are both resource poor and rich. Authors are multidisciplinary and regarded nationally and internationally in their field. Clinicians, advocates, policymakers, funders, and researchers will learn how programs were developed and implemented in each country. Authors describe children for whom pediatric palliative care is needed and provided for in their country. When applicable, a brief history of pediatric palliative care is included noting especially policy changes and legislative acts. For example, the chapter on Poland describes how pediatric palliative care grew from the Catholic church into a national movement spearheaded by several health care workers. The Pole national spirit that brought them through a change in political regime has also been a driving force in the pediatric palliative care movement. The chapter on South Africa, for example, illustrates how a resource poor country has been able to leverage philanthropic and government funding to make its dream of having an infrastructure of pediatric palliative care a reality. These are just a few examples of the inspiring stories that are included in this book. Readers from countries who wish to start a pediatric palliative care program, or advance an existing program, will learn valuable lessons from others who have faced similar barriers. Introduction and concluding chapters highlight the strengths and weaknesses of the modern pediatric palliative care movement.

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.

Perawatan paliatif yang tepat sangat penting untuk setiap anak dengan kondisi progresif yang tidak dapat disembuhkan. Perawatan ini untuk memberikan kualitas hidup terbaik di akhir kehidupan sambil mengurangi penderitaan fisik, psikologis, emosional dan spiritual. Prinsip perawatan ini adalah membangun sistem dan mekanisme pendukung. Dalam buku ini diberikan pula penjelasan mengenai tatalaksana pasien penyakit kronik. Spiritual Care merupakan salah satu bentuk layanan asuhan keperawatan yang mampu memberikan penguatan bagi pasien dengan penyakit kronik. Selain itu tatalaksana terhadap anak dengan penyakit kronik bisa diberikan guna peningkatan kualitas hidup anak, yakni oral care, tatalaksana nutrisi, tatalaksana kejang, tatalaksana perdarahan mulut pada anak.

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 the first time, Pediatric Clinics is devoting one issue to two clinically focused topics: Pediatric Palliative Care and Pediatric Hospital Medicine. Dr. Ottolini has organized her section to focus on a variety of issues of relevant to all pediatricians, but which pose special challenge to the Pediatric Hospitalists. As pediatric care has advanced, children who would not have survived infancy are growing into young adults with complex chronic diseases and dependence upon technology. They frequently require hospitalization to address exacerbation of underlying disease processes and procedures to improve their quality of life. The articles are devoted to patient care challenges of troubleshooting malfunctioning technology, co-managing medically complex patients pre and post-op with surgical colleagues, and the Hospitalist’s evolving role in performing procedures and sedation in this population of vulnerable patients. Also discussed rare strategies to maximize communication with parents, patients and primary care providers during hospitalization, especially for medically complex patients. Dr. Ullrich and Dr. Wolfe Pediatric have worked to bring relevant articles on palliative care to the pediatrician. While life-threatening conditions in childhood are rare, children with LTC account for a high proportion of pediatric hospital care, and about one half of such children die in the inpatient setting. The number of hospital-based pediatric palliative care programs has increased dramatically over the past decade to meet the palliative care needs of hospitalized children including symptom management, facilitation of communication, decision-making and advance care planning support, and coordination of care. Given these considerations, it is evident that the topics of pediatric palliative care and hospital medicine are fitting counterparts for this comprehensive issue.