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Palliative Care for Infants, Children, and Adolescents

A Practical Handbook

edited by Brian S. Carter, M.D., Marcia Levetown, M.D., and Sarah E. Friebert, M.D.

Publication Year: 2011

There are few things requiring more expertise, delicacy, and compassion than caring for an infant, child, or young adult with a life-limiting condition. Written by leading researchers, clinicians from relevant disciplines, family members, and advocates, this practical guide provides professionals involved in pediatric palliative and end-of-life care with comprehensive information in a single volume. Thoroughly updated and expanded, this edition includes chapters addressing the unique challenges facing children with HIV / AIDS and their families, care in home and ICU settings, difficult decision-making processes, and the importance of communication with the child and family as well as completely new chapters on spiritual dimensions of care and educational and advocacy initiatives. Intended for primary care physicians, pediatric practitioners and specialists, home care and hospice personnel, pastoral counselors, and affected families, the book includes useful resource and reference material and practical, hands-on tips. With contributions from an international group of expert educators, clinicians, and parents, this book takes a truly interdisciplinary approach to pediatric palliative care, presenting best practices, clear instruction, and the latest information and research for anyone involved in pediatric palliative and end-of-life care. Praise for the first edition "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 the American Academy of Child and Adolescent Psychiatry "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."—American Academy of Pediatrics Newsletter "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."—Journal of Palliative Medicine

Published by: The Johns Hopkins University Press


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pp. vii-viii

List of Contributors

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pp. ix-xiii

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pp. xv-xvi

In the seven years since the publication of Palliative Care for Infants, Children, and Adolescents, the field of pediatric palliative care has undergone explosive growth in recognition, availability, and opportunity. It has been gratifying to have played a role in this transformation and to be witness to the success of a field that is a passion for...


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1. Epidemiology and Health Services Research

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pp. 3-25

A team of pediatric health care providers—a social worker, a psychologist, a nurse, and a physician—convenes to design a new palliative and hospice care service for infants, children, and adolescents. Each member of the team has had extensive experience caring for youngsters who are living with life-threatening conditions. They realize, however, that their plans for this...

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2. Goals, Values, and Conflict Resolution

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pp. 26-55

Few tasks in pediatrics are as challenging as caring for children with life-threatening or terminal conditions. This challenge, unfolding over the course of a particular child’s care, requires health care professionals to weave knowledge, skills, and values into an effective effort to promote the patient’s family...

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3. Barriers to Integrating Palliative Care and Potential Solutions

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pp. 56-84

Aaron, a 3-month-old boy who has Krabbe disease, is referred to the palliative care team. He has undergone a bone marrow transplantation, which unfortunately failed to reverse the symptoms of the underlying disease. The disease has progressed, and he now depends on a ventilator, is unresponsive, and is not expected to survive more than a few...

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4. Educational Initiatives

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pp. 85-113

The provision of excellent pediatric palliative care is contingent on professionals who are prepared to deliver this complex care. Fortunately, in recent years there have been significant advances in the education of professionals both in formal training programs and through continuing education. This chapter summarizes several of these initiatives, including a model of nursing...

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5. The Art of Advocacy

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pp. 114-136

This chapter features the story of Nick Snow, a teenager from California who rallied to bring about change in the care of children faced with life-limiting and life-threatening conditions, while dealing with his own struggle against brain cancer. Key points in this chapter include the following...


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6. Decision Making

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pp. 139-168

Managing a life-limiting or life-threatening condition in partnership with an affected child and family inevitably requires making choices that vary in complexity, immediacy, and perceived significance; rarely is there a single “right” answer. Through clinical vignettes and focused summary of the literature, this chapter identifies factors involved in decision making...

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7. Communication Skills and Relational Abilities

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pp. 169-201

Good communication is the foundation of trusting relationships among the patient, family, and health care provider. Under ideal circumstances, there is free exchange of information and room for emotions that can be difficult to discuss, such as fears and anxieties on the part of the patient and family...

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8. Psychosocial Needs of the Child and Family

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pp. 202-226

Families with seriously ill children have begun on an uncharted journey with few road maps; despite our best efforts, families often feel they are traveling alone. Potentially life-altering decisions must be made, often quickly. The impact of a child’s chronic or sudden life-threatening condition on the nuclear family, extended family, and community is great. One role of the health care...

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9. Spiritual Dimensions

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pp. 227-243

Some of the most profound encounters with dying children and their families center on questions of spirituality and faith: Why? What happens? How will we survive? For many clinicians, responding appropriately to utterances of such transcendent gravity is perceived as extremely challenging. How, for example, should one react when a parent declares to the bedside nurse...

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10. Holistic Management of Symptoms

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pp. 244-274

TJ was a 16-year-old girl who lived with her mother and four younger sisters. She had first presented to medical attention with left arm and shoulder pain two years earlier, at which time a slow-growing tumor of the head of the left humerus was diagnosed. Unfortunately, the tumor progressed despite maximal treatment, and the oncology team felt that...

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11. Bereavement

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pp. 275-308

The death of one’s child can be among the most difficult losses to grieve. This is especially true when the child is underage and depends on the parent for life-sustaining activities. One goal of hospice and palliative care programs is to assist the family in being “prepared” for the death. Many hospice/palliative care professionals also speak about a “good” death. However...

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12. The Other Side of Caring: Caregiver Suffering

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pp. 309-342

Caring for children with life-threatening conditions and their families can be a source of profound satisfaction, renewal, and affirmation. Sharing the journey with sick and dying children and their families is a privilege that only a few experience. For these caregivers, suffering for and with is an...


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13. Palliative Care in the Neonatal-Perinatal Period

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pp. 345-386

Palliative care in the perinatal period is distinct in that care is provided in a setting usually associated with the joy of welcoming a normal newborn into the family. The birth of a baby with a life-limiting condition or fetal or newborn death is in stark contrast to the expected outcome of a natural and “normal” pregnancy, labor, and delivery. Likewise, in the NICU, the reality...

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14. Palliative Care in the Pediatric Intensive Care Setting

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pp. 387-413

Integrating the principles of palliative care into the pediatric intensive care unit (PICU) environment can be challenging because of physical, organizational, philosophical, and training issues specific to this setting. However, children receiving care in the PICU and their families have at least as much need for comprehensive child-centered care, control of symptoms, and...

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15. Palliative Care in the Home, School, and Community

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pp. 414-440

The benefits of home are many. In an interview after the death of their 2-year-old son at home, Mike and Gail Bielanin stated, “We wouldn’t have done it any other way. Being at home, away from those hospital walls, that cold steel crib, all those residents coming in every day . . . compared to sitting in our own comfy chair, our own living room, eating our own food...

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16. Palliative Care for the Child Who Has a Genetic Condition

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pp. 441-464

Katy’s parents have survived earth-shattering news that their second-born daughter has Canavan leukodystrophy, a rare inherited disorder in which spongy degeneration of the central nervous system leads to progressive mental deterioration. She has increased muscle tone, poor head control, megalocephaly, and blindness. Her parents and sister have ridden the roller coaster...

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17. Integrating Palliative Care with HIV Care and Treatment

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pp. 465-487

Pediatric and adolescent HIV and AIDS were first recognized less than 3 decades ago. In this period of time, the scientific understanding of and medical treatment for HIV infection have changed dramatically, altering the course of this life-threatening disease from relentlessly progressive and fatal to chronic and manageable with currently available treatment. Effective...

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18. Integrating Palliative Care with Pediatric Hematology/Oncology

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pp. 488-520

Pediatric hematology/oncology is a gratifying field, largely because so many children who have cancer are cured and because health care providers enjoy long-term relationships with children and their families. Both of these facts can make integrating palliative care into pediatric hematology/oncology care particularly challenging, especially when the child is likely to survive...


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pp. 521-539

E-ISBN-13: 9781421402130
E-ISBN-10: 1421402130
Print-ISBN-13: 9781421401492
Print-ISBN-10: 1421401495

Page Count: 576
Illustrations: 11 line drawings
Publication Year: 2011

Edition: second edition