Download or read book Effects of a Unique Hematology Oncology Pediatric Palliative Care Program on Medical Decision making and Communication Between Healthcare Providers and Families written by Cassie Kline and published by . This book was released on 2011 with total page 23 pages. Available in PDF, EPUB and Kindle. Book excerpt: Purpose : In 2005, Rady Children's Hospital San Diego (RCHSD) instituted a unique Hematology-Oncology Palliative Care Program that was integrated into the existing Hematology-Oncology Program. The purpose of this study was to evaluate family satisfaction with this novel Hematology-Oncology Supportive Care Program and the Supportive Care Decision-Making Tool (DMT). A secondary aim was to identify factors that play an important role in patient/family medical decision-making. Methods : A survey was developed by the Hematology-Oncology Supportive Care Program team to evaluate family satisfaction with the Hematology-Oncology Supportive Care Program and DMT and also identify what factors play a role in patient/family medical decision-making. Families were asked to complete the self-administered questionnaire within four weeks of participating in a Supportive Care Team Conference and receiving a DMT. A smaller subset of study participants also completed a verbal interview. Results : Twenty parents or guardians of pediatric hematology-oncology patients who had received care at RCHSD were consented to participate in this study. All of the patients had approached one of the following treatment changes : stem cell transplantation, transition to end-of-life palliative care, or major treatment-related changes. All of the study participants had attended a Supportive Care Team medical decision-making conference and received a DMT. Eighty-five percent found that the supportive care team and physicians explained the treatment options, prognosis, and risks/benefits of each treatment appropriately. Additionally, ninety percent of those surveyed reported that they remembered receiving the DMT and found it to be clear and straightforward. Seventy percent found the DMT to be a good reference when questions or concerns about their child's treatment arose. Regarding treatment decisions, the most important considerations to the study participants were their child's quality of life, the child's chance of improving, perception of the child's wishes, and the hospital staff's advice. Of the people and services that were most useful in guiding medical decision-making, one hundred percent reported that nurses, ninety-five percent reported that physicians and ninety percent reported the Supportive Care Team helped guide treatment decisions. Ninety-five percent of parents reported the Supportive Care Team and the DMT were most helpful in the following areas : answering questions as the child progressed through treatment and providing guidance about whom to contact when questions arose. Of note, ninety percent of the study participants reported the DMT improved communication between the family and the healthcare providers and eighty percent reported the DMT helped the responding parent understand the child's condition. Conclusions : The Hematology-Oncology Supportive Care Program and DMT facilitated effective communication between families and healthcare providers, and provided families with decision-making support.
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 Specialized Pediatric Palliative Care written by Claudia Delgado-Corcoran and published by Springer Nature. This book was released on with total page 117 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Oxford Textbook of Palliative Nursing written by Betty Rolling Ferrell and published by Oxford University Press. This book was released on 2019-03-04 with total page 935 pages. Available in PDF, EPUB and Kindle. Book excerpt: The Oxford Textbook of Palliative Nursing remains the most comprehensive treatise on the art and science of palliative care nursing available. Dr. Betty Rolling Ferrell and Dr. Judith A. Paice have invited 162 nursing experts to contribute 76 chapters addressing the physical, psychological, social, and spiritual needs pertinent to the successful palliative care team. Organized within 7 Sections, this new edition covers the gamut of principles of care: from the time of initial diagnosis of a serious illness to the end of a patient's life and beyond. This fifth edition features several new chapters, including chapters on advance care planning, organ donation, self-care, global palliative care, and the ethos of palliative nursing. Each chapter is rich with tables and figures, case examples for improved learning, and a strong evidence-based practice to support the highest quality of care. The book offers a valuable and practical resource for students and clinicians across all settings of care. The content is relevant for specialty hospice agencies and palliative care programs, as well as generalist knowledge for schools of nursing, oncology, critical care, and pediatric. Developed with the intention of emphasizing the need to extend palliative care beyond the specialty to be integrated in all settings and by all clinicians caring for the seriously ill, this new edition will continue to serve as the cornerstone of palliative care education.
Download or read book Palliative Care in Pediatric Oncology written by Joanne Wolfe and published by Springer. This book was released on 2017-12-20 with total page 313 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
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 Pediatric Palliative Care written by Stefan J. Friedrichsdorf and published by MDPI. This book was released on 2019-02-08 with total page 253 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book is a printed edition of the Special Issue "Pediatric Palliative Care" that was published in Children
Download or read book Pediatric Hospital Medicine and Pediatric Palliative Care An Issue of Pediatric Clinics written by Mary C. Ottolini and published by Elsevier Health Sciences. This book was released on 2014-08-28 with total page 257 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
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 When Children Die written by Institute of Medicine and published by National Academies Press. This book was released on 2003-01-09 with total page 712 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Textbook of Interdisciplinary Pediatric Palliative Care E Book written by Joanne Wolfe and published by Elsevier Health Sciences. This book was released on 2011-01-26 with total page 512 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Comprehensive Cancer Care for Children and Their Families written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2015-08-31 with total page 91 pages. Available in PDF, EPUB and Kindle. Book excerpt: Childhood cancer is an area of oncology that has seen both remarkable progress as well as substantial continuing challenges. While survival rates for some pediatric cancers present a story of success, for many types of pediatric cancers, little progress has been made. Many cancer treatments are known to cause not only significant acute side effects, but also lead to numerous long-term health risks and reduced quality of life. Even in cases where the cancer is considered curable, the consequences of treatment present substantial long-term health and psychosocial concerns for children, their families, their communities, and our health system. To examine specific opportunities and suggestions for driving optimal care delivery supporting survival with high quality of life, the National Cancer Policy Forum of the Institute of Medicine and the American Cancer Society co-hosted a workshop which convened experts and members of the public on March 9 and 10, 2015. At this workshop, clinicians and researchers in pediatric oncology, palliative, and psychosocial care, along with representatives from the U.S. Food and Drug Administration, National Cancer Institute, Children's Oncology Group, pharmaceutical companies, and patient advocacy organizations, discussed and developed a menu of options for action to improve research, quality of care, and outcomes for pediatric cancer patients and their families. In addition, parents of children with cancer and pediatric cancer survivors shared their experiences with care and provided poignant personal perspectives on specific quality of life concerns and support needs for children and families across the life spectrum. This report summarizes the presentations and discussion of the workshop.
Download or read book Palliative Care for Infants Children and Adolescents written by Brian S. Carter and published by JHU Press. This book was released on 2011-10-15 with total page 769 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Pediatric Palliative Care Global Perspectives written by Caprice Knapp and published by Springer Science & Business Media. This book was released on 2012-01-03 with total page 463 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book When Children Die written by Institute of Medicine and published by National Academies Press. This book was released on 2003-10-30 with total page 16 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Palliative Care in Oncology written by Bernd Alt-Epping and published by Springer. This book was released on 2015-03-26 with total page 302 pages. Available in PDF, EPUB and Kindle. Book excerpt: Palliative care provides comprehensive support for severely affected patients with any life-limiting or life-threatening diagnosis. To do this effectively, it requires a disease-specific approach as the patients’ needs and clinical context will vary depending on the underlying diagnosis. Experts in the field of palliative care and oncology describe in detail the needs of patients with advanced cancer in comparison to those with non-cancer disease and also identify the requirements of patients with different cancer entities. Basic principles of symptom control are explained, with careful attention to therapy for pain associated with either the cancer or its treatment and to symptom-guided antineoplastic therapy. Complex therapeutic strategies for palliative cancer patients are highlighted that involve both cancer- and symptom-directed options and address a range of therapeutic aims. Issues relating to drug use in palliative cancer care are fully explored, and a separate section is devoted to care in the final phase. A range of organizational and policy issues are also discussed, and the book concludes by considering likely future developments in palliative care for cancer patients. Palliative Care in Oncology will be of particular interest to palliative care physicians who are interested in broadening the scope of their disease-specific knowledge, as well as to oncologists who wish to learn more about modern palliative care concepts relevant to their day-to-day work with cancer patients.
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 2021-07-27 with total page 1269 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.
