Principal Investigators:
Nancy Berlinger, PhD, MDiv, The Hastings Center
George Fitchett, PhD, Rush University Medical Center
Wendy Cadge, PhD, Brandeis University
Erin Flanagan-Klygis, MD, Rush University Medical Center
Funder: Texas Children's Hospital
Article:
George Fitchett, Kathryn A. Lyndes, Wendy Cadge, Nancy Berlinger, Erin Flanagan, and Jennifer Misasi, "The Role of Professional Chaplains on Pediatric Palliative Care Teams: Perspectives from Physicians and Chaplains." Journal of Palliative Medicine 14, no. 6 (2011).
This is a copy of an article published in the Journal of Palliative Medicine ©2011 Mary Ann Liebert, Inc.; Journal of Palliative Medicine is available online at: http://www.liebertonline.com.
Advisory committee:
Martha Dimmers, MDiv, MSW
Manager, Pastoral and Spiritual Care Department
Children’s Hospital and Regional Medical Center, Seattle
Deborah Dokken, MPA
Associate Director
Initiative on Pediatric Palliative Care (IPPC)
Betty Ferrell, RN, MA, PhD
Research Scientist
City of Hope National Medical Center
Bebe Guill, MDiv, former chaplain
Duke University Medical Center pediatric brain tumor program
Now with the Institute for Care at the End of Life at Duke Divinity School
George Handzo, MDiv
Vice President, Pastoral Care Leadership and Practice
The HealthCare Chaplaincy
Former pediatric chaplain, Memorial Sloan-Kettering Cancer Center
Project background
Pediatric palliative care is a distinct specialty within palliative care. While palliative care often involves support for a patient’s family, pediatric palliative care teams typically work with a patient’s whole family, including parents, young siblings, and sometimes grandparents. It is also a specialty within pediatric medicine, as the care of seriously ill children usually takes place in the hospital.
Professional chaplains are pediatric palliative care providers. They listen to, talk with, and provide a supportive presence for sick children and their families. They collaborate with physicians and nurses to care for children coping with pain or treatment side effects. Medical staff seek out chaplains for emotional support, and for advice in learning how to respond to the suffering they witness. Chaplains are highly trained as listeners, and may, through close listening, learn things about the way a child’s illness is being experienced by a family that are not obvious to other team members. Chaplains may also have special insight into the religious and cultural factors that can shape how a child and family face illness and suffering. Because patients’ and families’ experiences can affect patient well-being and treatment decision-making, chaplains’ insights may contribute to improving the quality of pediatric palliative care offered to individual patients and throughout an institution.
Project goals and activities
At present, it is difficult for the nation’s 10,000 chaplains to learn how to assess and improve the quality of the care they provide, including the quality of their work in pediatric palliative care. To fill this research gap and meet this practical need, The Hastings Center and Rush University Medical Center designed and conducted a pilot study to learn about the role of chaplains in well-established pediatraic palliative care programs in children's hospitals in the U.S. IRB approval for this study was provided by Rush University Medical Center.
With assistance from our advisory committee of experts in research, standards, training, and care delivery in pediatric palliative care and in professional chaplaincy, we identified 28 well-established pediatric palliative care programs. We then surveyed these programs to learn how they provided spiritual care to patients and families. We randomly selected eight programs to study in detail.
For more information about this project, contact: Nancy Berlinger, berlingern@thehastingscenter.org