Pediatric Palliative Care
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
Books and Videos
Resources and Professional Organizations
Teaching/Training and Research
End-of-Life Care on the NICU
Policy Statements/Precepts
Publications:
A Call for Change: Recommendations to Improve the Care of Children with Life-Threatening and Life-Limiting Conditions, Children's International Project on Palliative/Hospice Services (ChIPPS). Available through the National Hospice and Palliative Care Organization. http://www.nhpco.org/i4a/store/?pageid=3260
Cancer Pain Relief and Palliative Care for Children, published by the World Health Organization in collaboration with the International Association for the Study of Pain. http://www.soros.org/death/who.htm
The Compendium of Pediatric Palliative Care, Children International Project on Palliative/Hospice Services (ChIPPS). Available through the National Hospice and Palliative Care Organization. http://www.nhpco.org/i4a/store/?pageid=3260
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 at
http://www.nap.edu/.
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. Bibliography
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. http://content.nejm.org/
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
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 .
Resources and Professional Organizations:
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. http://www.chionline.org/
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. http://www.hopestreetkids.org
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. http://www.ippcweb.org/
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. http://www.jasonprogram.org/
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. http://www.kidspath.com
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. http://www.cshcn.org/palliativecare/
Robert Wood Johnson Foundation (RWJF) has a section on their website about Pediatric Palliative Care, which includes a list of Programs as well as additional resource information. http://www.rwjf.org/news/special/pediatricPrograms.jhtml
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. http://www.starbright.org/
The Center for Study of Society and Medicine has syllabus in PDF format for a Palliative Care Teaching Program for Pediatric Residents
http://www.societyandmedicine.org/teaching/palliative-care.asp
Ethics in Neonatal Intensive Care
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://www.aap.org/policy/re0007.html