In 1997 Dana-Farber physician Joanne Wolfe founded the Pediatric Advanced Care Team to address the needs of youth facing serious illness and the end of life. With two recent grants from AVDF, Dr. Wolfe and her colleagues have created resources to help families engage in advance care planning, a major gap in the field.
Despite advances in pediatric palliative care and a desire on the part of parents for more opportunities for advance care planning, large scale adoption of advance care planning for children with life-threatening illness remains unrealized. Dr. Wolfe and Dana-Farber are filling that gap.
With an initial planning grant from AVDF, Dana-Farber met this need by creating two resources for use in pediatrics, one for parents and one for adolescents/young adults with serious illness. The guides include topics such as how to elicit understanding of illness, gain a shared understanding of hopes and worries, explore what is most important to the child and/or family, elicit sources of support and wishes for family involvement, and provide recommendations that fit the goals of the family. This is a novel area of research in pediatric palliative care which aims to improve communication and the quality of end of life care delivered to children with life-threatening illness and their families.
The project leaders have been especially pleased with the high degree of interest and support for this project from patients with serious illness, parents, and the providers who care for them. One parent reported “These are really good questions and I love this framework. Our son is doing well, so let’s take a look now at what we are looking at as we move ahead.” Another noted that the guide provides a framework to help parents address difficult decisions: “We want to talk about the future, and we don’t like it when the medical team comes in, drops a bomb, and then leaves without explaining what it means for my son, what it means for us as a family. I so appreciate when the staff sits down and takes the time to discuss the topics in this guide with us.”
A follow up grant awarded in 2020 is funding Dr. Wolfe and her colleagues to develop, pilot and evaluate the Pediatric Serious Illness Care Program (PediSICP). The primary aims of the PediSICP are to teach serious illness communication skills to non-palliative care health care professionals, in order to facilitate advanced care planning conversations with children and adolescents with serious illness, their families, and the providers who care for them. The hope, in doing so, is to improve important patient and family outcomes.
Dr. Kevin Churchwell, President and CEO of Boston’s Children’s Hospital, praised the effort: “This remarkable project will create a serious illness communication curriculum and training program to support clinicians all over the world in communicating with seriously ill children, adolescents, young adults and their families to ensure that care is aligned with patient and family goals and values.”
When the project is complete, Dana-Farber will disseminate their work to patients and families through The Courageous Parents Network.