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