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This unique book is a first-of-its-kind resource that comprehensively covers each facet and challenge of providing optimal perinatal palliative care. Designed for a wide and multi-disciplinary audience, the subjects covered range from theoretical to the clinical and the practically relevant, and all chapters include case studies that provide real-world scenarios as additional teaching tools for the reader. Perinatal Palliative Care: A Clinical Guide is divided into four sections. Part One provides the foundation, covering an overview of the field, key theories that guide the practice of perinatal palliative care, and includes a discussion of perinatal ethics and parental experiences and needs upon receiving a life-limiting fetal diagnosis. Part Two delves further into practical clinical care, guiding readers through issues of obstetrical management, genetic counseling, neonatal pain management, non-pain symptom management, spiritual care, and perinatal bereavement care. Part Three discusses models of perinatal palliative care, closely examining evidence for different types of PPC programs: from hospital-based programs, to community-based care, and examines issues of interdisciplinary PPC care coordination, birth planning, and team support. Finally, Part Four concludes the book with a close look at special considerations in the field. In this section, racial, ethnic, and cultural perspectives and implications for PPC are discussed, along with lessons in how to provide PPC for a wide-range of clinical and other healthcare workers. The book closes with a look to the future of the field of perinatal palliative care. Thorough and practical, Perinatal Palliative Care: A Clinical Guide is an ideal resource for any healthcare practitioner working with these vulnerable patient populations, from palliative care specialists, to obstetricians, midwifes, neonatologists, hospice providers, nurses, doulas, social workers, chaplains, therapists, ethicists, and child life specialists.
The first resource of its kind, this authoritative handbook holistically addresses the multidimensional aspects of perinatal and neonatal palliative care. Written by an interprofessional team of renowned specialists, it is both a text and an evidencebased reference for all members of the palliative care team. This book helps individual team members forge interdisciplinary approaches to care, assess current programs, improve the quality of care, and tailor new models of care. Encompassing the perspectives of numerous multidisciplinary healthcare providers, the book underscores the unique aspects of perinatal and neonatal palliative care, with a focus on improving quality of life, as well as comfort at the end of life. It describes healthcare for neonates and pregnant mothers, care and support of the family, planning and decision-making, and effective support for grief and bereavement, addressing all palliative and neonatal care settings. Other chapters focus on the prenatal period after diagnosis of the expected baby's life-threatening condition. These include such topics as care of the mother, delivering devastating news, and advance care planning. Each chapter contains photos, figures, and/or tables and case studies with clinical implications and critical thinking questions. Also included is an extensive listing of relevant palliative care organizations. Paintings and poetry provide an artistic backdrop to the authors' inspiring words. Key Features: Addresses a growing need for specific provider resources in neonatal palliative care Covers the clinical and emotional aspects of palliative care for babies and their families Abundant resources for effective and compassionate family-centered care Case studies with critical thinking questions Accompanying video clips of healthcare and family interactions Supplemental image bank included
This textbook details the nursing care of babies with life limiting conditions and sets the context within the philosophy of internationally collaborative neonatal palliative care emphasising emotional and practical support for their families. Currently, increasing interest from nursing and medical fields regarding palliative care for babies in the antenatal and neonatal period is evident. This innovative and unique text provides experienced nurses and student nurses alike with realistic guidance in caring for babies with palliative care needs, alongside the crucial support for their families and identifies important strategies for professional self care. Nursing experts in this field collaborated to develop a reference book which supports holistic and integrated clinical practice. Parents’ experiences of what they consider helpful or not so helpful are interwoven throughout the chapter. There is currently no other textbook which offers the above information and guidance specifically for nurses and allied health professionals. As such this book will appeal to all nurses and health professionals working within the neonatal palliative care specialty in a global context.
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.
"This book describes and affirms the wide range of experiences and emotions that can follow a life-limiting prenatal diagnosis. It offers encouragement and practical ideas for moving forward, including guidance for decision-making, strategies for coping with the remainder of your pregnancy, and ideas for nurturing and being with your baby, before and after birth and death. This book also describes the concept of perinatal hospice and palliative care, which is a well-established way of supporting parents whose babies are expected to die before or shortly after birth"--
Amy Kuebelbeck shares how she and her husband made the decision to forgo extreme measures to save her son Gabriel after learning at five months pregnant he suffered from hypoplastic left heart syndrome and discusses how they prepared for his inevitable death after being born.
This book develops a virtue-based defense of the value of perinatal hospice. Engaging with important themes from the work of MacIntyre and Adams, it shows how perinatal hospice manifests virtues crucial to meeting the needs of families in these difficult circumstances.
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?"
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 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.