Center to Advance Palliative Care

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Pediatric Palliative Care

The following is excerpted from: Solomon MZ, Dokken DL, Fleischman AR, Heller K, Levetown M, Rushton CH, Sellers DE, Truog RD. for IPPC, 2002. The initiative for pediatric palliative care (IPPC): Background and goals. Newton, MA: Education Development Center, Inc. http://www.ippcweb.org/initiative.asp .

Courtesy of The Initiative for Pediatric Palliative Care: http://www.ippcweb.org/ .

There is growing empirical evidence that the health care system is failing children and families, when they are confronted by a life-threatening illness. Too many children undergo painful procedures and suffer from the symptoms of advancing disease without adequate relief, despite the fact that modern medicine has the means to relieve their pain and improve most symptoms.1,2 Families of gravely ill children can feel abandoned and overwhelmed, often suffering emotional and sometimes financial consequences for years to come. Social supports to children and families before and after death are woefully inadequate, and health care professionals themselves are often left without emotional support for the difficult work they do. In their training, physicians and nurses have received virtually no opportunities to practice the skills necessary for communicating effectively with dying children and their families.3 Practicing health care professionals also lack guidance on how best to manage the conflicting goals and values that can arise in difficult cases.4 Such conflicts are made all the more challenging by the broad cultural and religious diversity represented in the U.S. population. Moreover, while there is an ongoing national effort to improve palliative care among adult patients, very little has been done so far in the United States on behalf of children and their families.

Clearly, the problem of pediatric palliative care is a multifaceted one that will need to be addressed through multiple reinforcing strategies: medical education, regulatory reform, changes in health care financing, and hospital quality improvement efforts, as well as broad social changes in the ways in which our society views children, families, death and dying.

1. Wolfe J, Grier H, Klar N, Levin S, Ellenbogen J, Salem-Schatz S, Emanuel E, Weeks J. Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine, 2000;342(5)
2. Galloway KS, Yaster M. Pain and symptom control in terminally ill children. Pediatric Clinics of North America, 2000;47(3):711-746.
3. Sahler, OJ, Frager G, Levetown M, Cohn F, Lipson M. Medical education about end-of-life care in the pediatric setting: Principles, challenges and opportunities. Pediatrics, 2000;105(3).
4. Cassidy RC, Fleischman AR. Pediatric Ethics – From Principles to Practice. Monographs in Clinical Pediatrics. The Netherlands: Harwood Academic Publishers GmbH, 1996.

The following materials are suggested as a starting point for those who are exploring opportunities to provide pediatric palliative care services.

Publications

End-of-Life Care: Special Issues in Pediatric Oncology , Hilden, Himmelstein, Freyer et al. From Improving Palliative Care for Cancer , eds. Foley and Gelband, National Cancer Policy Board, National Research Council, 2001. Available from The
National Academies Press.

Hospice Care for Children, 2nd ed., Armstrong-Dailey and Zarbock, eds., Oxford University Press, 2001.

Innovations in End-of-Life Care: An International Journal of Leaders in End-of-Life Care, Vol. 2, No. 2, 2000. This issue is dedicated to issues of pediatric palliative care. It contains a comprehensive bibliography on pediatric palliative care issues.

Symptoms and Suffering at the End of Life in Children with Cancer, Wolfe, Grier, Klar et al. NEJM, vol. 342, no. 5, February 3, 2000. NEJM

When Children Die: Improving Palliative and End-of Life Care for Children and their Families. Institute of Medicine (IOM). http://www.nap.edu/catalog/10390.html

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Books & Videos

Palliative Care for Infants, Children, and Adolescents. A Practical Handbook. Edited by Brian S. Carter, M.D., F.A.A.P., and Marcia Levetown, M.D. Foreword by Kathleen M. Foley, M.D. 416 pp, $29.95 paperback, ISBN 0-8018-8005-X, Baltimore: Johns Hopkins University Press, 2004.

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.

When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families edited by Marilyn J. Field and Richard E. Behrman, 712 pp, $35.96, ISBN 0-309-08437-7, Washington, DC, National Academies Press, 2003.

A report on palliative and end-of-life care for children and family bereavement. A listing of only a few of the problems this volume takes up gives a sense of its breadth: inadequate assessment and management of pain and pain medications that are tested for use on adults but not on children; lack of insurance or insurance that forces parents to choose between curative and palliative care; fragmented health and social services that frustrate parents trying to coordinate care for their children; language and cultural barriers; inadequate bereavement care; and a paucity of research to guide clinical decision making. To read Michael Rowe's full book review in the October, 2003 Archives of Pediatrics and Adolescent Medicine click here: http://archpedi.ama-assn.org/cgi/content/full/157/10/1035?etoc

The Initiative for Pediatric Palliative Care (IPPC) is developing a comprehensive curriculum centered on six modules:

  • Engaging with Children and Families
  • Relieving Pain and Other Symptoms
  • Improving Communication and Strengthening Relationships
  • Sharing Decision-Making
  • Responding to Suffering and Bereavement
  • Establishing Continuity of Care

http://www.ippcweb.org/video.asp.

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Resources & Professional Organizations

Concurrent Care for Children Requirement: Implementation Toolkit
Concurrent Care for Children: Implementation Toolkit provides information on the options available to states that are implementing Section 2302 or are considering expansion of pediatric palliative care services to children. This toolkit is provided by the District of Colombia Pediatric Palliative Care Collaborative (DCPPCC) and the National Hospice and Palliative Care Organization (NHPCO).

The Children's Project on Palliative/Hospice Services (ChiPPS), a project of NHPCO, is working to concretely enhance the science and practice of pediatric hospice and palliative care, and to increase the availability of state of the art services to families.

Children's Hospice International: The main focus of this organization is on the quality of life for the dying child and the ongoing, strengthened life of the family. They work closely with medical professionals as a research and resource bank, providing technical assistance, standards of care, research and education. Children's Hospice International

Hope Street Kids ' mission is to eliminate childhood cancer through advocacy, education and cutting-edge research, and to help support children with cancer and their families during and after treatment. Hope Street Kids

The Initiative for Pediatric Palliative Care represents a consortium of organizations joining forces to improve the care and the quality of life of these children and their families. The website provides curriculum, videos, quality improvement tools, that would be helpful for starting, measuring and enhancing a pediatric palliative care program. Initiative for Pediatric Palliative Care

The Jason Program provides medical, emotional and spiritual care to Maine's critically ill and dying children and their families. The program is led by a team of professionals working in collaboration with Maine's communities. The Jason Program

Kids Path: A model of care for seriously ill and grieving children. Started in the Carolinas the program is now working towards establishing a consortium of Kid Path palliative providers across the United States. Kids Path

The Pediatric Palliative Care Consulting Service of the Center for Children with Special Needs. This site offers information and resources on palliative care for parents and professionals who advocate and care for children with special health care needs. Pediatric Palliative Care Consulting Service

The STARBRIGHT Foundation is dedicated to the development of projects that empower seriously ill children to combat the medical and emotional challenges they face on a daily basis. Starbright Foundation

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Teaching/Training & Research

Ethics, Decision-Making and Advance Care Planning
The third module of NHPCO’s Pediatric Palliative Care Online Training Series, Ethics, Decision-Making and Advance Care Planning, is now available through NHPCO’s E-Online. The series provides instant access to educational resources for pediatric care providers, written by leading pediatric palliative/hospice care experts across the country. Two other modules, Pediatric Palliative Care Principles and Standards and Pediatric Palliative Care Delivery Models, are also available. Each module offers valuable content, case studies and practical examples to help your organization deliver quality care for children with life-threatening conditions and their families. Learn more and access the online modules at nhpco.org/pediatrics.

The Children's Project on Palliative/Hospice Services (ChiPPS), a project of NHPCO, is working to concretely enhance the science and practice of pediatric hospice and palliative care, and to increase the availability of state of the art services to families.

End-of-Life Care on the NICU

Ethics in Neonatal Intensive Care (PowerPoint file)

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Policy Statements/Precepts:

American Academy of Pediatrics - Policy Statement on Palliative Care for Children:
This statement presents an integrated model for providing palliative care for children living with a life-threatening or terminal condition. Advice on the development of a palliative care plan and on working with parents and children is also provided. Barriers to the provision of effective pediatric palliative care and potential solutions are identified.
http://aappolicy.aappublications.org/

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Legislative

California’s Pediatric Palliative Care Waiver Approved by Federal Government

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