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

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JHU Press, Jun 24, 2004 - Medical - 399 pages
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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.

ContributorsStephen R. Connor, Ph.D., Vice President, National Hospice and Palliative Care Organization, Alexandria, VirginiaLynn Czarniecki, M.S.N., C.N.S., Advance Practice Nurse, Department of Pediatrics, New Jersey Medical School, Newark, New JerseyBetty Davies, R.N., Ph.D., Professor and Chair, Department of Family Health Care Nursing, University of California at San Francisco, San Francisco, CaliforniaDeborah Dokken, M.P.A., Parent and Family Advocate, Chevy Chase, MarylandDale Evans, R.N., Ph.D., Vice President, Hospice and Community Services, Community Nursing Services, Salt Lake City, UtahChris 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, PennsylvaniaW. Jeffrey Flowers, M.Div., Director of Pastoral Counseling, Medical College of Georgia Hospital and Clinics, Augusta, GeorgiaJoel Frader, M.D., Professor of Pediatrics, Medical Ethics, and Humanities, Northwestern University, Children's Memorial Hospital, Chicago, IllinoisGerri Frager, R.N., M.D., F.R.C.P.C., Medical Director, Pediatric Palliative Care Service, IWK Health Centre, Halifax, Nova Scotia, CanadaDavid 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, MichiganSarah Friebert, M.D., Director, Division of Pediatric Palliative Care, Children's Hospital of Akron, Akron, OhioJ. Russell Geyer, M.D., Professor of Pediatrics, Division of Hematology-Oncology, Children's Hospital and Regional Medical Center, Seattle, WashingtonMary Jo Gilmer, R.N., M.B.A., Ph.D., Associate Professor of Nursing, Vanderbilt University School of Nursing, Nashville, TennesseeSam Grubman, M.D., Pediatrician, Department of Pediatrics, Saint Vincent's Hospital, New York, New YorkMaria 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, CaliforniaRichard 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, WalesGeraldine Haynes, R.N., B.S.N., Nursing and Palliative Care Consultant, Kirkland, WashingtonRoss 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, WashingtonJoanne 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, OhioBruce 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, WisconsinSteven R. Leuthner, M.D., M.A., Associate Professor of Pediatrics and Bioethics, Medical College of Wisconsin, Milwaukee, WisconsinTiffany Levinson, R.N., M.S., F.N.P., Stem Cell Transplant Nurse Practitioner, Children's Memorial Hospital, Chicago, IllinoisStephen Liben, M.D., F.R.C.P., Director, Palliative Care Program, Montreal Children's Hospital, Montreal, Quebec, CanadaYarrow McConnell, B.Sc., Student, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, CanadaElaine Morgan, M.D., Associate Professor of Pediatrics, Department of Hematology-Oncology, Children's Memorial Hospital, Northwestern University, Chicago, IllinoisJason Morrow, M.D., Ph.D., University of Texas Medical Branch, Galveston, TexasJames 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 JerseyStacy F. Orloff, Ed.D., L.C.S.W., Manager, Child and Family Support Program, The Hospice of the Florida Suncoast, Largo, FloridaAnthony Perszyk, M.D., Geneticist and Pediatrician, Division of Genetics, Nemours Children's Clinic, Jacksonville, FloridaSara Perszyk, R.N., B.S.N., Pediatric Palliative Care and Hospice Nurse, Child and Family Support Program, The Hospice of the Florida Suncoast, Largo, FloridaKathleen Quance, M.S., C.C.L.S., Counselor, Child and Family Support Program, The Hospice of the Florida Suncoast, Largo, FloridaCynda 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, MarylandJohn M. Saroyan, M.D., Fellow, Pediatric Pain and Anesthesia, College of Physicians and Surgeons, Columbia University, New York, New YorkCarson Strong, Ph.D., Professor of Human Values and Ethics, University of Tennessee Health Sciences Center, Memphis, TennesseeLizabeth Sumner, R.N., B.S.N., Director of the Children's Program, San Diego Hospice Corporation, San Diego, CaliforniaSuzanne Toce, M.D., Professor of Pediatrics, St. Louis University; Attending Neonatologist, Cardinal Glennon Children's Hospital, St. Louis, MissouriErwin Veale Jr., M.Div., Associate Director of Pastoral Care and Counseling, and Chaplain, Children's Medical Center, Medical College of Georgia Health, Inc., Augusta, GeorgiaSharon Weinstein, M.D., Director of Pain Medicine and Palliative Care, Huntsman Cancer Institute, University of Utah, Salt Lake City, UtahJanice Wheeler, M.Ed., President and Founder, Project Joy and Hope for Texas, Pasadena, TexasJ. William Worden, M.Ed., Ph.D., Professor of Psychology, Rosemead Graduate School of Psychology, Laguna Niguel, California

 

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Contents

Epidemiology and Health Services Research
3
GoalsValues and Conflict Resolution
23
Barriers Education and Advocacy in Palliative Care
44
The Cycle of Care
69
Communication at the End of Life
112
Psychosocial and Spiritual Needs of the Child and Family
143
Holistic Management of Symptoms
165
Bereavement
198
Special Care Environments and Patient Populations
249
Palliative Care in the Pediatric Intensive Care Unit
275
Palliative Care in the Home School and Community
294
The Child with a Genetic Condition
310
The Child with HIV Infection
334
Children and Adolescents with Cancer
350
Websites Organizations and Other Resources
377
Index
387

The Other Side of Caring Caregiver Suffering
222

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Page 346 - A SIMPLE child That lightly draws its breath, And feels its life in every limb, What should it know of death ? I met a little cottage girl : She was eight years old she said ; Her hair was thick with many a curl That clustered round her head. She had a rustic, woodland air, And she was wildly clad ; Her eyes were fair, and very fair ; Her beauty made me glad. " Sisters and brothers, little maid ! How many...

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About the author (2004)

Brian S. Carter, M.D., is a professor in the Department of Pediatrics, Division of Neonatology, at Vanderbilt University Medical Center. Marcia Levetown, M.D., is Director of Palliative Care at the Methodist Hospital in Houston and a Soros Faculty Scholar Alumna of the Project on Death in America.

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