ChiPPS Pediatric Palliative Care Newsletter
Issue #8, August 2007

Edited by Charles A. Corr, PhD, CT, Christy Torkildson, RN, PHN, MSN,
and Mary Kay Tyler, RN, MSN, CNP

Issue Topic: Neonatal Loss
Download this Issue's collection of articles (PDF)

Welcome to the eighth issue of the ChiPPS electronic newsletter. This e-newsletter links to a PDF collection of articles contributed by a number of our colleagues in the field. ChiPPS (the Children’s Project on Palliative/Hospice Services) is a program of the National Hospice and Palliative Care Organization. This newsletter has been developed by the ChiPPS Education Work Group, co-chaired by Christy Torkildson and Mary Kay Tyler.

Comments about the activities of ChiPPS, its Education Work Group, or this issue of the newsletter are welcomed. We also encourage readers to suggest topics, contributors, and specific ideas for future issues of this newsletter. Please contact Christy and Mary Kay via e-mail. Reach Christy at ctorkildson@georgemark.org or Mary Kay at mktyler@hospicewr.org.

As we customarily do in each issue of our e-newsletter, we want to offer some items that may be of interest.

1.  Pediatric Palliative Care Track at CTC. ChiPPS is proud to have created an educational track of sessions that are part of NHPCO’s Clinical Team Conference to be held in New Orleans, November 29 – December 1, 2007. These concurrent sessions are designed to promote best practices in the field and provide learning opportunities to advance the knowledge, skill, and competence of clinical staff. More information about the CTC is available online at NHPCO’s conference Web page. http://www.nhpco.org/i4a/pages/Index.cfm?pageID=4586

2. Melissa Gilbert to Speak. Actor Melissa Gilbert, a recognized leader in entertainment, is giving voice to the needs of seriously-ill children and their families in her role as spokesperson and President of the Board of Directors of the Children’s Hospice and Palliative Care Coalition (CHPCC). Ms. Gilbert is scheduled to deliver the opening plenary at the NHPCO’s 8th Clinical Team Conference on Thursday, November 29, 2007. Additionally, Ms. Gilbert will discuss “Partnering for Children,” a national campaign launched by Children’s Hospice and Palliative Care Coalition and the National Hospice and Palliative Care Organization to raise awareness about the unique needs of children with life threatening conditions and their families. Read the press release at http://www.nhpco.org/i4a/pages/Index.cfm?pageID=5269 announcing this special guest speaker.

3. Caring Connections. NHPCO's Caring Connections initiative continues to add new brochures to its collection of resources that are available on the redesigned Caring Connections Web site, www.caringinfo.org. Brochures of interest to those involved with pediatric care include "Talking with Your Child about Illness and Treatment," "Your Child's Pain," "When Your Child Dies: Coping with Grief," and "Talking with Your Child's Doctor." These brochures, available in English and Spanish, may be downloaded in PDF at no charge. Multiple copies are available for purchase through NHPCO’s Marketplace, www.nhpco.org/marketplace.

Issue #8: Neonatal Loss.
Download the following collection of articles on neonatal loss (PDF):

Passing the Torch: Hard-lessons Learned and Shared from One Family to Another
Beth Seyda, BS, and Ann Fitzsimons, BS, MBA 

The story of two families, two babies, and the gift of sharing.

Palliative Care and the Special Care Newborn
Brian S. Carter, MD, FAAP 

This article addresses the important concept of palliative care for newborn infants, some ethical principles underlying decisions for such care, and a brief “how to” section on the provision of family-centered, comprehensive palliative care in the SCN.

Experience with Implementation of a Palliative Care Team in the NICU
Gay Gale, RNC, MS, and Alison Brooks, RN, MS, CNS 

In this article Alison and Gay talk not only about  the model but the challenges faced when reality intrudes, providing some direction for consistency and quality of care.

Providing Emotionally Supportive Care to Parents Facing the Choice between Palliative End-of-Life Care and Intensive Care in the NICU
Deborah L. Davis, PhD 

Continuing from the previous issue (#7) of this newsletter, in the article Providing Emotionally Supportive Care to Parents as They Face Decisions after Prenatal Diagnosis of a Baby’s Life-Limiting Condition; Deborah gives specific examples and suggestions to provide emotional support to family and staff in decision-making in the NICU.

Twins A and B: The Story of Alfred and Bubba
Rana Limbo, PhD, APRN, BC 

Rana tells the story of “Alfred and Bubba” as a resource for staff working with parents of critically-ill twins or other multiples with insights from nurses and physicians who cared for these babies.

Moments Held: Healing with Documentary Photography
Todd Hochberg 

Todd shares how his documentary photographs through their storytelling qualities about relationships can help shape and maintain connection to experience and offer healing after loss. Examples of his images are shown.

Educational Resources
Karen Paradise Baranowski, RN 

Karen provides resources in our newsletter and maintains an up-to-date calendar on the NHPCO Web site that can be found at http://www.nhpco.org/pediatrics

Thank you for taking time to read this issue and for any feedback that you can offer us. Providing pediatric palliative and hospice care to children, adolescents, and their family members has made great strides in recent years, even though it is certainly not always easy and still faces many challenges and obstacles. We wish you all the best in your good work..

If you are not on our mailing list and received this newsletter from a friend or some other source, please send an email message to CHIPPS2@NHPCO.org requesting to be added to our mailing list. If you are a member of NHPCO, you can go to the Communications Preferences tab in your individual member record online and “opt-in” for communications from ChiPPS. Member Services will be happy to help you adjust your communications preferences; contact them at 800/646-6460.

Visit the ChiPPs Web page at www.nhpco.org/pediatrics for further materials and resources of interest.

© ChiPPs Newsletter, NHPCO 2007.