Authors

  1. Ferrell, Betty PhD, MA, FAAN, FPCN, CHPN

Article Content

"AND A LITTLE CHILD SHALL LEAD THEM[horizontal ellipsis]"

I recently received an excited text message with the above words from a friend and colleague, Gay Walker, RN, who has led the pediatric palliative care efforts at Trinity Kids Care Hospice Program in California. Gay was texting from Sacramento, where she had just provided testimony to the state legislature on the success of the Pediatric Waiver, which has provided for palliative/hospice care to be administered concurrently with disease-focused therapies for children. The results of this pilot work have demonstrated excellent care provided at reduced cost. The results are so impressive that there is now action in the legislature to consider a similar waiver for adults so that they too can receive such combined care.

 

We often think of pediatric palliative care as being new to the field, with few pediatric palliative programs. We may think that pediatric palliative care is building on adult care, but that simply is not true. Quite the contrary, I would say that much of what has been done in pediatrics has created a strong foundation for the adult world. Have you recently heard of the concept of "patient-centered care" or "family-centered care?" Our pediatric colleagues have years of experience in these concepts. Is "family conferencing" a new practice or one that you are trying to improve in your setting? Interdisciplinary care planning? Our pediatric colleagues do routinely what we often believe we are inventing.

 

Since 2003, when we launched our first End of Life Nursing Education Consortium (ELNEC)-Pediatric course, I have had the opportunity to observe closely many pediatric palliative care nurses. They are amazing!

 

I have listened intently and watched as nurses such as Gay Walker in California and now Diane Parker in South Carolina have fought battles from insurance companies to state legislatures to get care needed by seriously ill children. Pediatric palliative care nurses are tireless, and they are focused.

 

Nurses such as Vanessa Battista and Gina Santucci in Philadelphia are working in major academic centers and children's hospitals to create palliative care programs. These nurses guide residents, intricately manage symptoms, and support patients through decision making. These nurses lay their souls on the line to stop the fast-paced engines of engrained systems of care to honor the life of a single child.

 

We often speak of the "conspiracy of silence" in end-of-life care, where our public, patients, and professionals want to avoid death. Never is this more true than in pediatrics, where the loss of a child is so unimaginable, so against the natural order, and thus so avoided. But nurses such as Cheryl Thaxton at Duke University and Amy Haskamp at Riley Children's Hospital in Indiana have been voices that have broken the silences because they know that children deserve better.

 

The advances in pediatric palliative care are spreading worldwide. In my work through ELNEC in Africa, Eastern Europe, Russia, Asia, and around the world where children too frequently die of AIDS, malaria, cancer, infections, and tuberculosis, nurses are learning about palliative care. Just 2 weeks ago, Joetta Wallace from Miller Children's Hospital in California and Kathy Perko from Doernbecher Children's Hospital in Oregon went to Taiwan to teach more than 450 pediatric nurses palliative care. What a great gift to this country.

 

We are fortunate in our field to have had pioneer researchers including Dr Pam Hinds and Dr Betty Davies, whose research has described important pediatric experiences such as decision making by children and families and bereavement care.

 

Nurses Rana Limbo and Kathie Kobler are role models for transforming clinical care. Their work in creating meaningful rituals at the time of infant death is profound. If you have not seen it, view their book, Meaningful Moments: Ritual and Reflection When a Child Dies (2013: Gunderson Medical Foundation), which captures the art of pediatric palliative care as nurses orchestrate rituals of caring for children in the hours before or following death.

 

Now is the time to support expansion of pediatric palliative care. Do all you can to support, celebrate, and honor these colleagues. We are fortunate that certification in pediatric palliative care is now available through the National Board for Certification of Hospice and Palliative Nurses. That is a very important way to recognize and raise the bar of palliative pediatric care.

 

Let us raise high the field of pediatric palliative care. We have followed in their small but mighty steps, and now we stand on the shoulders of our pediatric palliative nursing giants.

 

Betty Ferrell, PhD, MA, FAAN, FPCN, CHPN

 

Editor-in-Chief

 

bferrell@coh.org