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

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9780801879692: 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 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

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About the Author:

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.

Excerpt. Reprinted by permission. All rights reserved.:

FOREWORDIn 1993, a World Health Organization (WHO) committee drafted guidelinesto ensure humane, compassionate care for children with life-limiting illness,specifically cancer. This WHO monograph, Cancer Pain Relief and PalliativeCare for Children, called attention to the needs of children, infants, andadolescents with cancer for pain relief, symptom management, and treatmentof their psychological distress. WHO advocated a three-pronged approachto facilitate the integration of palliative care into health care delivery systemsand reform health care policies, to provide professional and public education,and to make available drugs for pain and palliative care.

Since then, increasing attention has focused on not only the needs of childrenwith cancer but also the needs of all children with serious illnesses, rangingfrom HIV/AIDS to genetic and neurodegenerative diseases, fromneonates to adolescents. Joining with WHO, international health care policyand medical organizations―including the Council of Europe, the EuropeanUnion, and various European and American professional medical andnursing organizations―have adopted the proposition that pediatric palliativecare needs to be an essential aspect of medical care services. This pointwas made most emphatically in the 2003 Institute of Medicine (IOM) reportentitled "When Children Die."The IOM's interdisciplinary panel of pediatricexperts framed their consensus about the need to improve care for childrenby stating that "children with fatal and potentially fatal conditions andtheir families fail to receive competent, compassionate and consistent careto meet their physical, emotional and spiritual needs."This evidence-basedreport emphasized that there is an existing body of knowledge that could, ifapplied, readily improve the care of children and their families. Like theWHO monograph, the IOM report called for professional education, policyreform, increased public awareness, and research focused on addressingthe palliative care needs of children and their families, ranging from symptommanagement to grief and bereavement programs.

Yet significant barriers―attitudinal, educational, and institutional―prevent children from receiving the care that they deserve. This clinical handbookaddresses the educational challenges set forth in the IOM report. It isa compendium of educational material uniquely edited to facilitate healthcare professionals' understanding of how to think about, talk with, and practicecaring for the seriously ill child with competency and compassion. Eachchapter weaves into the text a brief clinical scenario in a cogent, readable style,articulating the important issues and reviewing assessment and managementstrategies.

The chapters are rich in their emphasis on physician, patient, and familycommunication and even model useful dialogue. In contrast to other textsthat present such material abstractly, this handbook contextualizes the informationusing a case-based method. This approach is effective in describingand differentiating what the facts are and in identifying the elements of asuccessful clinical encounter (namely, wisdom, judgment, empathy, and compassion).The handbook also fosters sophisticated thinking about the processof decision making.

The interdisciplinary teams of chapter authors frame the information ina pragmatic and integrative manner. Reading each of the chapters is like sittingwith a master teacher. You hear the focused attention on the details ofthe case but you learn much more than the facts. You learn how to thinkabout the issues, not merely the solution or the treatment protocol. Whatthis handbook does so well is to emphasize the work of the interdisciplinaryteam in providing care and to recognize that the secret of caring for childrenis in caring for them, their parents, their siblings, their caregivers, and theirhealth care professionals. This brilliant clinical handbook is an extraordinaryresource, an educational tool that clinicians can use to educate themselves.Why is it so important that health care professionals who care for childrenlearn pediatric palliative care? I learned the answer to this question frompoignant interviews with parents whose children did not receive appropriate,humane palliative care. Parents entrust their seriously ill children to thecare of a physician and an interdisciplinary team. They believe that the caretheir child receives will be the best care. We can assure these parents that thisis so only if health care professionals have the skills and knowledge to integratesymptom management and psychological support into the difficult andemotionally wrenching situations of caring for a seriously ill dying child.

From a positive perspective, this clinical handbook is only one initiativein a series of ongoing efforts to advance palliative care for children. Thereare a growing number of pediatric health care professionals with specialexpertise in pediatric palliative care. The American Academy of Pediatrics,the National Hospice and Palliative Care Organization, the American Academyof Hospice and Palliative Medicine, the Hospice and Palliative CareNursing Association, and the Association of Social Work Oncologists havedeveloped initiatives to educate their members in the principles and practiceof palliative care.

The challenge going forward is to create a seamless health care system,integrating the best in innovation with the best in palliation. In this way, wecan assure children and their caregivers that we deserve their trust by meetingtheir needs for palliative care.Kathleen M. Foley, M.D.

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