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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.
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.
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.
This book is a printed edition of the Special Issue "Pediatric Palliative Care" that was published in Children
A first-of-its-kind, point-of-care teaching tool, Pediatric Hospital Medicine: A High-Value Approach focuses exclusively on high-value care as it relates to the growing field of pediatric hospital medicine (PHM). This practical, approachable resource shares expert insights and guidance from Drs. Moises Auron, Colleen Schelzig, Sangeeta Krishna, and Anika Kumar, as well as faculty, physician, and NP staff, and current and former fellows at the esteemed Cleveland Clinic Children’s Hospital. High-yield, readable content ensures usefulness for pediatric hospitalists at the point of care who seek to reduce unnecessary diagnostic tests and treatments, and trainees who are reviewing and studying for board exams.
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.
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
Challenging Cases in Pediatric Hospital Medicine is a collection of interesting pediatric hospital medicine cases that address clinical conundrums or issues and are to be used as teaching cases of clinical reasoning. Other cases will use inpatient care as a launching point for complex ethical dilemmas or system-based care. Each chapter begins with the clinical competencies that will be addressed and the patient presentation. Next, the chapter steps through the case workup and management, as well as the case outcome and follow-up. Chapters conclude with valuable pearls, discussions of aspects of care that are not just disease management but a true reflection of the scope of pediatric hospital medicine. Recommended readings round out each chapter.
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.
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.