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

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Anita Catlin, D.N.Sc., F.N.P., Associate Professor of Nursing, Sonoma
State University, Rohnert Park, California

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Overview

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., Fran*ois-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, Californiain

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Editorial Reviews

SciTech Book News

A case-based clinical handbook, [ Palliative Care for Infants, Children, and Adolescents] combines a pragmatic approach to symptom management with a humanitarian approach emphasizing more abstract issues such as psychological support for both patient and caregiver.

Home Health Care Nurse

This practical guide provides professionals involved in pediatric end-of-life care with comprehensive information for hands-on care in a single volume.

E-Streams

Presents helpful, and thoughtfully written information on how to best help and treat terminally ill children, teens, and their families... An excellent resource for any medical provider... Informative, comprehensive and readable.

— Jeanelle Bitikofer

Doody's Review Service
Reviewer: Michael G White, MD (Ochsner Clinic Foundation)
Description: This is an excellent guide to the concepts and practice of palliative care for pediatric patients. It brings together information from many different experts to present a good overview of the subject.
Purpose: This book is written to advance both the concept and practice of palliative care for pediatric patients. This is an area of pediatric practice that is rarely addressed in a formal way and certainly worthy of the editor's efforts. The book is easy to read and provides a very good review of the current practices.
Audience: As it is broad in its objectives, the book seems to be broad in its target audience. It reads well and should be of interest to anyone interested in palliative care for pediatric patients.
Features: The authors review different aspects of palliative care, including general issues with our culture and society, a broad range of concerns for the dying child and family, and ways of providing an appropriate environment for the many different patients in need of palliative care.
Assessment: This is an excellent book. There are few books available covering this area, making this a valuable addition to the field of pediatrics. All practitioners involved with end-of-life care for pediatric patients should find this book valuable.
IAHPC Bookshop

Anyone involved with pediatric palliative care will benefit from reading this book. Highly recommended.

— Roger Woodruff

American Acadaemy of Pediatrics Newsletter

A great resource and learning tool... well-written, well organized, very practical, and user friendly as a reference for all disciplines involved with palliative care.

— Sonia Imaizumi, M.D.

American Academy of Pediatrics Newsletter
A great resource and learning tool... well written, well organized, very practical, and user friendly as a reference for all disciplines involved with palliative care.
International Journal of Nursing Studies
The voices of parents can be heard throughout, enabling the reader to learn what life is like for them and how we as health professionals can support them.

— Julia Downing

International Journal of Nursing Studies - Julia Downing
The voices of parents can be heard throughout, enabling the reader to learn what life is like for them and how we as health professionals can support them.
Journal of the American Academy of Child and Adolescent Psychiatry
An inspiring and accessible look at what end-of-life care for children should be—it is a text that should grace the shelf of every clinician facing the death of young patients.
Journal of Palliative Medicine
This book is rich with palliative care experts’ knowledge as well as humbling experiences of children and their families undergoing the latest stages of a life-threatening illness, the dying process, the death, and finally bereavement. Every chapter is written with a high degree of expertise and the authors’ compassion is ever present.

3 Stars from Doody
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Product Details

  • ISBN-13: 9780801880056
  • Publisher: Johns Hopkins University Press
  • Publication date: 6/28/2004
  • Edition description: Older Edition
  • Pages: 399
  • Product dimensions: 6.08 (w) x 9.02 (h) x 0.90 (d)

Meet 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 Principal, HealthCare Communication Associates in Houston, past chair of the American Academy of Pediatrics' Section on Hospice and Palliative Medicine, and a Soros Faculty Scholar Alumna of the Project on Death in America. Sarah E. Friebert, M.D., is Director of Palliative Care at Akron Children’s Hospital, associate professor of pediatrics at Northeast Ohio Universities Colleges of Medicine and Pharmacy, and chair of the American Academy of Pediatrics' Section on Hospice and Palliative Medicine.

Johns Hopkins University Press

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Table of Contents

Foreword by Kathleen M. Foley
Preface
List of Contributors

PART I SOCIETAL AND INSTITUTIONAL ISSUES
1 Epidemiology and Health Services Research / Chris Feudtner and Stephen R. Connor
2 Goals,Values, and Conflict Resolution/ Carson Strong, Chris Feudtner, Brian S. Carter, and Cynda H. Rushton
3 Barriers, Education, and Advocacy in Palliative Care/ Joel Frader, Elaine Morgan, Tiffany Levinson, Jason Morrow, John M. Saroyan, Mary Jo Gilmer, and Brian S. Carter

PART II THE CYCLE OF CARE
4 Decision Making in Pediatric Palliative Care/ Yarrow McConnell, Gerri Frager, and Marcia Levetown
5 Communication at the End of Life/ Ross M. Hays, Geraldine Haynes, J. Russell Geyer, and Chris Feudtner
6 Psychosocial and Spiritual Needs of the Child and Family/ Stacy F. Orloff, Kathleen Quance, Sara Perszyk, W. Jeffrey Flowers, and Erwin Veale Jr.
7 Holistic Management of Symptoms
Richard Hain, Sharon Weinstein, James Oleske, Stacy F. Orloff, and Susan Cohen
8 Bereavement / Betty Davies, J. William Worden, Stacy F. Orloff, Maria Gudmundsdottir, Suzanne Toce, and Lizabeth Sumner
9 The Other Side of Caring: Caregiver Suffering/ Cynda H. Rushton

PART III SPECIAL CARE ENVIRONMENTS AND PATIENT POPULATIONS
10 The High-Risk Newborn/ Suzanne Toce, Steven R. Leuthner, Deborah Dokken, Brian S. Carter, and Anita Catlin
11 Palliative Care in the Pediatric Intensive Care Unit/ Marcia Levetown, Stephen Liben, and Marylene Audet
12 Palliative Care in the Home, School, and Community/ Bruce P. Himelstein, Stacy F. Orloff, Dale Evans, and Janice Wheeler
13 The Child with a Genetic Condition/ Sara Perszyk and Anthony Perszyk
14 The Child with HIV Infection/ Brian S. Carter, James Oleske, Lynn Czarniecki, and Sam Grubman
15 Children and Adolescents with Cancer/ Joanne M. Hilden, Sarah Friebert, Bruce P. Himelstein,
David R. Freyer, and Janice Wheeler
Appendix: Websites, Organizations, and Other Resources
Index

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Preface

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.

Read More Show Less

Foreword

In 1993, a World Health Organization (WHO) committee drafted guidelines to ensure humane, compassionate care for children with life-limiting illness, specifically cancer. This WHO monograph, Cancer Pain Relief and Palliative Care for Children, called attention to the needs of children, infants, and adolescents with cancer for pain relief, symptom management, and treatment of their psychological distress. WHO advocated a three-pronged approach to facilitate the integration of palliative care into health care delivery systems and 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 children with cancer but also the needs of all children with serious illnesses, ranging from HIV/AIDS to genetic and neurodegenerative diseases, from neonates to adolescents. Joining with WHO, international health care policy and medical organizations?including the Council of Europe, the European Union, and various European and American professional medical and nursing organizations?have adopted the proposition that pediatric palliative care needs to be an essential aspect of medical care services. This point was made most emphatically in the 2003 Institute of Medicine (IOM) report entitled "When Children Die." The IOM's interdisciplinary panel of pediatric experts framed their consensus about the need to improve care for children by stating that "children with fatal and potentially fatal conditions and their families fail to receive competent, compassionate and consistent care to meet their physical, emotional and spiritual needs." This evidence-based report emphasized that there is an existing body of knowledge that could, if applied, readily improve the care of children and their families. Like the WHO monograph, the IOM report called for professional education, policy reform, increased public awareness, and research focused on addressing the palliative care needs of children and their families, ranging from symptom management to grief and bereavement programs.

Yet significant barriers?attitudinal, educational, and institutional? prevent children from receiving the care that they deserve. This clinical handbook addresses the educational challenges set forth in the IOM report. It is a compendium of educational material uniquely edited to facilitate health care professionals' understanding of how to think about, talk with, and practice caring for the seriously ill child with competency and compassion. Each chapter weaves into the text a brief clinical scenario in a cogent, readable style, articulating the important issues and reviewing assessment and management strategies.

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

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

From a positive perspective, this clinical handbook is only one initiative in a series of ongoing efforts to advance palliative care for children. There are a growing number of pediatric health care professionals with special expertise in pediatric palliative care. The American Academy of Pediatrics, the National Hospice and Palliative Care Organization, the American Academy of Hospice and Palliative Medicine, the Hospice and Palliative Care Nursing Association, and the Association of Social Work Oncologists have developed initiatives to educate their members in the principles and practice of 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, we can assure children and their caregivers that we deserve their trust by meeting their needs for palliative care. Kathleen M. Foley, M.D.
Professor of Neurology, Neurosurgery and Clinical Pharmacology
Weill Medical School of Cornell University;
Attending Neurologist, Pain and Palliative Care Service
Memorial Sloan-Kettering Cancer Center;
Director of Palliative Care Initiative, Open Society Institute

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