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.
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.
This textbook is the first to focus on comprehensive interdisciplinary care approaches aimed at enhancing the wellbeing of children with cancer and their families throughout the illness experience. Among the topics addressed are the epidemiology of pediatric cancer distress, including physical, emotional, social, and spiritual dimensions; the role of the interdisciplinary team; communication and advance care planning; symptom prevention and management; care at the end of life; family bereavement care; and approaches to ease clinician distress. The contributing authors are true experts and provide guidance based on the highest available level of evidence in the field. The book has not only an interdisciplinary but also an international perspective; it will appeal globally to all clinicians caring for children with cancer, including physicians, nurses, psychosocial clinicians, and chaplains, among others.
Childen's palliative care has developed rapidly as a discipline, as health care professionals recognize that the principles of adult palliative care may not always be applicable to children at the end of life. The unique needs of dying children are particularly evident across Africa, where the scale of the problem is overwhelming, and the figures so enormous that they are barely comprehensible: over 400,000 children in Africa died from AIDS in 2003, and out of the 166,000 children a year diagnosed with cancer, 85% of these are in the developing world. Despite the enormous need, provision of children's palliative care in Africa is almost non-existent, with very few health workers trained and confident to provide care for dying children. The challenges of providing palliative care in this setting are different to those in more developed countries, contending with the shortage of physical and human resources in addition to the vast scope of the care needed. Written by a group with wide experience of caring for dying children in Africa, this book provides practical, realistic guidance by improving access to, and delivery of, palliative care in this demanding setting. It looks at the themes common to palliative care--including communication, assessment, symptom management, psychosocial issues, ethical dilemmas, end of life care, and tips for the professional on compassion and conservation of energy--but always retains the focus on the particular needs of the health care professional in Africa. While containing some theory, the emphasis is on practical action throughout the book. Children's Palliative Care in Africa provides health care professionals working in Africa, and other resource-poor settings, with the confidence, knowledge, and capacity to improve care for the terminally ill child in constrained and demanding environments.
These guidelines have been developed to support countries to relieve pain in their paediatric populations. These guidelines address persisting pain in children caused by conditions such as cancer, HIV/AIDS, sickle-cell disease, burns, trauma, and phantom limb pain. Recommendations -- developed following a careful and transparent appraisal of available evidence -- are presented for the pharmacological treatment of mild, moderate and severe pain. The guidelines include chapters on the various systems used to classify pain and on the evaluation of pain, which reviews the available tools for routine pain measurement in children. Provision of sustainable pain relief within health care systems is covered in a separate chapter. Since morphine and other opioid analgesics -- required for the relief of moderate-to-severe pain in children -- are listed under the 1961 UN Single Convention on Narcotic Drugs, the new guidelines include an annex explaining the Convention's requirements for the handling and procurement of opioid analgesics for the relief of pain.
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
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.
Practical Management of Complex Cancer Pain provides practical advice on advanced pain management techniques for cancer pain. Comprehensive case histories give readers insight into the treatment of pain management.
One in three people will develop some kind of cancer in their lifetime. The overall cancer incidence has increased by 25% since 1975. Anaesthetic involvement in hospital interactions has been estimated at around 75%, and so anaesthetists are likely to have major input into the care of the cancer patient. This input may start with the preoperative assessment, but often extends to the intensive care unit and the management of both acute and chronic disease, or procedural related pain. This book is comprised of five main sections dealing with cancer, anaesthesia for cancer surgery, intensive care, pain management and supportive and palliative care. The chapters are authored by acknowledged specialists in their field of cancer patient management. The anaesthesia section discusses not just major surgery but includes the specific and subtle differences that exist in the diverse types of specialist cancer surgery. The pain section deals with the current status of several specific cancer pain problems with contemporary evidence and recent developments in management. This book also introduces novel ways of looking at conventional treatments such as the genetic aspects of opioid use. For a complete understanding of the cancer patient, other aspects of care are also considered, including psychological care and complementary medicines.
