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

List of Contributors

ix M. Karen Ballard, M.C.M., B.C.C., Director, Chaplaincy Services Department, Akron Children’s Hospital, Akron, Ohio Jennifer Brown, Parent and Consultant, Memphis, Tennessee David Browning, M.S.W., B.C.D., Senior Scholar and Co-Director, Patient Safety and Quality Initiatives, Institute for Professionalism and Ethical Practice, Children’s Hospital Boston and Harvard Medical School, Waltham, Massachusetts Lori Butterworth, Co-Founder, Children’s Hospice and Palliative Care Coalition; Founder, Jacob’s Heart Children’s Cancer Support Services, Santa Cruz, California Brian S. Carter, M.D., F.A.A.P., Professor of Pediatrics, Division of Neonatology, Monroe Carell, Jr. Children’s Hospital at Vanderbilt, Nashville, Tennessee Anita J. Catlin, D.N.Sc., F.N.P., F.A.A.N., Professor of Nursing, Sonoma State University, Rohnert Park, California Susan O. Cohen, M.A., A.D.T.R., C.C.L.S., Pediatric Advanced Illness Care Coordinator, The David Center for Children’s Pain and Palliative Care, Hackensack Medical Center, Hackensack, New Jersey Margaret Comeau, M.H.A., Director, Catalyst Center, Health and Disability Working Group, Boston University School of Public Health, Boston, Massachusetts Devon Dabbs, Co-Founder and Executive Director, Children’s Hospice and Palliative Care Coalition, Watsonville, California Deborah L. Dokken, M.P.A., Consultant and Parent Advocate, Chevy Chase, Maryland CONTRIBUTORS x contributors Elana E. Evan, Ph.D., Director, UCLA Children’s Comfort Care Program; Assistant Professor of Pediatrics, Pediatric Pain Program, David Geffen School of Medicine at UCLA, Los Angeles, California Betty Ferrell, Ph.D., R.N., F.A.A.N., Research Scientist, City of Hope National Medical Center, Duarte, California Chris Feudtner, M.D., Ph.D., M.P.H., Director, Department of Medical Ethics; Director of Research and Attending Physician, Pediatric Advance Care Team and Integrated Care Service, Division of General Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania Kris Ford, parent Sarah E. Friebert, M.D., F.A.A.P., F.A.A.H.P.M., Director, A Palette of Care Program, Haslinger Division of Pediatric Palliative Care, Akron Children’s Hospital, Akron, Ohio; Associate Professor of Pediatrics, Northeast Ohio Universities Colleges of Medicine and Pharmacy, Rootstown, Ohio Mary Jo Gilmer, Ph.D., M.B.A., R.N., Professor of Nursing, Vanderbilt University School of Nursing, Nashville, Tennessee Robert J. Graham, M.D., Associate, Division of Critical Care, Department of Anesthesiology, Perioperative and Pain Medicine, Children’s Hospital Boston, Boston, Massachusetts Dianne Gray, B.S., President, Hospice and Healthcare Communications, Naples, Florida Brian Greffe, M.D., Director, National Children’s Hospital International, PACC; Professor of Pediatrics, Hematology, Oncology, and Bone Marrow Transplantation, Department of Pediatrics, University of Colorado, Denver, Colorado Lee Ann Grimes, Faculty, Project DOCC—Delivery of Chronic Care; Parent, Houston, Texas Richard Hain, M.D., LATCH Senior Lecturer in Paediatric Palliative Medicine, Department of Child Health, Cardiff University School of Medicine, University Hospital of Wales, Cardiff, United Kingdom Melody Hellsten, M.S.N., P.N.P., Director of Community Programs, Center for Comprehensive Care of Children with Complex Chronic Conditions, Christus Santa Rosa Children’s Hospital; Instructor, Department of Pediatrics, University of Texas Health Science Center at San Antonio, San Antonio, Texas Kari R. Hexem, M.P.H., Center for Pediatric Clinical Effectiveness, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania Susan M. Huff, R.N., M.S.N., Director, Pediatrics at Home, Johns Hopkins Children’s Center, Baltimore, Maryland contributors xi Nancy Hutton, M.D., Medical Director, Harriet Lane Compassionate Care Program; Director, Intensive Primary Care Clinic; Associate Professor, Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland Hollye Harrington Jacobs, M.S., R.N., M.S.W., former End-of-Life Nursing Education Consortium (ELNEC) Pediatric Coordinator, City of Hope National Medical Center, Duarte, California; Vice President of Programs, Dream Foundation; Author; Educator; Huffington Post Contributor, Santa Barbara, California Barbara Jones, Ph.D., M.S.W., Associate Professor, School of Social Work, University of Texas at Austin, Austin, Texas Patrick M. Jones, M.D., M.A., Assistant Professor of Pediatrics, Division of Neonatal-Perinatal Medicine, University of Texas Health Science Center Medical School, Houston, Texas Jeffrey C. Klick, M.D., Director, Pediatric Palliative Care, Children’s Healthcare of Atlanta, Clinical Assistant Professor of Pediatrics, Emory University School of Medicine, Atlanta, Georgia Kendra D. Koch, Chair, Parent Advisory Council, Dell Children’s Medical Center, Austin, Texas Dexter Lanctot, M.Div., B.A.Ph., Chaplain, Pastoral Care Services, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania Steven R. Leuthner, M...