Palliative Care for Infants, Children, and Adolescents : A Practical Handbook

Palliative care for terminally ill adults is receiving growing recognition as a major component in medical care. Yet far less is known or understood about the needs of infants and children with life-limiting conditions. Developed by leading researchers and practitioners from relevant disciplines, this practical guide provides professionals involved in pediatric end-of-life care with comprehensive information for hands-on care in a single volume. Early chapters present the epidemiology of palliative pediatrics, ethical principles, education, and advocacy. Contributors next address the decision-making process, holistic symptom management, communication with the child and family, as well as their psychological and spiritual needs, and such issues as bereavement and caregiver suffering. Individual chapters focus on palliative care in specific settings (NICU, PICU, home, school, and community) and for major conditions (genetic disease, HIV, and cancer). Case studies discuss the experience and perspective of parents. Intended for primary care doctors, pediatric practitioners and specialists, home care nurses, hospice workers, and pastoral counselors, the book also includes a list of additional resources and support organizations for professionals and family members. Contributors Stephen R. Connor, Ph.D., Vice President, National Hospice and Palliative Care Organization, Alexandria, Virginia Lynn Czarniecki, M.S.N., C.N.S., Advance Practice Nurse, Department of Pediatrics, New Jersey Medical School, Newark, New Jersey Betty Davies, R.N., Ph.D., Professor and Chair, Department of Family Health Care Nursing, University of California at San Francisco, San Francisco, California Deborah Dokken, M.P.A., Parent and Family Advocate, Chevy Chase, Maryland Dale Evans, R.N., Ph.D., Vice President, Hospice and Community Services, Community Nursing Services, Salt Lake City, Utah Chris Feudtner, M.D., Ph.D., M.P.H., Director of Research and Attending Physician for PACT (Palliative Care Team), Division of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania W. Jeffrey Flowers, M.Div., Director of Pastoral Counseling, Medical College of Georgia Hospital and Clinics, Augusta, Georgia Joel Frader, M.D., Professor of Pediatrics, Medical Ethics, and Humanities, Northwestern University, Children's Memorial Hospital, Chicago, Illinois Gerri Frager, R.N., M.D., F.R.C.P.C., Medical Director, Pediatric Palliative Care Service, IWK Health Centre, Halifax, Nova Scotia, Canada David R. Freyer, D.O., Associate Professor of Pediatrics and Human Development, Michigan State University College of Human Medicine; Division of Pediatric Hematology-Oncology and Bone Marrow Transplantation, DeVos Children's Hospital, Grand Rapids, Michigan Sarah Friebert, M.D., Director, Division of Pediatric Palliative Care, Children's Hospital of Akron, Akron, Ohio J. Russell Geyer, M.D., Professor of Pediatrics, Division of Hematology-Oncology, Children's Hospital and Regional Medical Center, Seattle, Washington Mary Jo Gilmer, R.N., M.B.A., Ph.D., Associate Professor of Nursing, Vanderbilt University School of Nursing, Nashville, Tennessee Sam Grubman, M.D., Pediatrician, Department of Pediatrics, Saint Vincent's Hospital, New York, New York Maria Gudmundsdottir, R.N., Ph.D., Postgraduate Research Faculty, Department of Family Health Care Nursing, University of California at San Francisco School of Nursing, San Francisco, California Richard Hain, M.B.B.S., M.D., M.Sc., M.R.C.P., F.R.C.P.C.H., Senior Lecturer in Paediatric Palliative Care, University of Wales College of Medicine, Llandough Hospital, Cardiff, Wales Geraldine Haynes, R.N., B.S.N., Nursing and Palliative Care Consultant, Kirkland, Washington Ross M. Hays, M.D., Professor, Departments of Rehabilitation Medicine