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 Marylene Audet, Montreal, Quebec, Canada
Anita Catlin, D.N.Sc., F.N.P., Associate Professor of Nursing, Sonoma State University, Rohnert Park, California
Susan Cohen, M.A., A.D.T.R., C.C.L.S., Supervisor, Child Life-Creative Arts Therapy, Tomorrow's Children Institute, Hackensack University Medical Center, Hackensack, New Jersey
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 and Pediatrics, University of Washington School of Medicine, and Director, Palliative Care Consulting Service, Children's Hospital and Medical Center, Seattle, Washington
Joanne M. Hilden, M.D., Chair, Department of Pediatric Hematology- Oncology, and Medical Director, Pediatric Palliative Care, The Children's Hospital at The Cleveland Clinic, Cleveland, Ohio
Bruce P. Himelstein, M.D., F.A.A.P., Pediatric Palliative Care Program Director, Children's Hospital of Wisconsin; Associate Professor, Division of Hematology-Oncology, Department of Pediatrics, Medical College of Wisconsin, Milwaukee, Wisconsin
Steven R. Leuthner, M.D., M.A., Associate Professor of Pediatrics and Bioethics, Medical College of Wisconsin, Milwaukee, Wisconsin
Tiffany Levinson, R.N., M.S., F.N.P., Stem Cell Transplant Nurse Practitioner, Children's Memorial Hospital, Chicago, Illinois
Stephen Liben, M.D., F.R.C.P., Director, Palliative Care Program, Montreal Children's Hospital, Montreal, Quebec, Canada Yarrow McConnell, B.Sc., Student, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada
Elaine Morgan, M.D., Associate Professor of Pediatrics, Department of
Hematology-Oncology, Children's Memorial Hospital, Northwestern University, Chicago, Illinois
Jason Morrow, M.D., Ph.D., University of Texas Medical Branch, Galveston, Texas
James Oleske, M.D., M.P.H., François-Xavier Bagnoud Professor of Pediatrics, and Director, Division of Pulmonary, Allergy, Immunology, and Infectious Diseases, Department of Pediatrics, New Jersey Medical School, Newark, New Jersey
Stacy F. Orloff, Ed.D., L.C.S.W., Manager, Child and Family Support Program, The Hospice of the Florida Suncoast, Largo, Florida
Anthony Perszyk, M.D., Geneticist and Pediatrician, Division of Genetics, Nemours Children's Clinic, Jacksonville, Florida
Sara Perszyk, R.N., B.S.N., Pediatric Palliative Care and Hospice Nurse, Child and Family Support Program, The Hospice of the Florida Suncoast, Largo, Florida
Kathleen Quance, M.S., C.C.L.S., Counselor, Child and Family Support Program, The Hospice of the Florida Suncoast, Largo, Florida
Cynda H. Rushton, D.N.Sc., R.N., F.A.A.N., Associate Professor of Nursing, Faculty, Phoebe Berman Bioethics Institute, and Coordinator, Harriet Lane Compassionate Care, Johns Hopkins University and Children's Center, Baltimore, Maryland
John M. Saroyan, M.D., Fellow, Pediatric Pain and Anesthesia, College of Physicians and Surgeons, Columbia University, New York, New York
Carson Strong, Ph.D., Professor of Human Values and Ethics, University of Tennessee Health Sciences Center, Memphis, Tennessee
Lizabeth Sumner, R.N., B.S.N., Director of the Children's Program, San Diego Hospice Corporation, San Diego, California
Suzanne Toce, M.D., Professor of Pediatrics, St. Louis University; Attending Neonatologist, Cardinal Glennon Children's Hospital, St. Louis, Missouri
Erwin Veale Jr., M.Div., Associate Director of Pastoral Care and Counseling, and Chaplain, Children's Medical Center, Medical College of Georgia Health, Inc., Augusta, Georgia
Sharon Weinstein, M.D., Director of Pain Medicine and Palliative Care, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah
Janice Wheeler, M.Ed., President and Founder, Project Joy and Hope for Texas, Pasadena, Texas
J. William Worden, M.Ed., Ph.D., Professor of Psychology, Rosemead Graduate School of Psychology, Laguna Niguel, California
