BY COURAGEOUS PARENTS NETWORK

One of the most gratifying developments for Courageous Parents Network has been the response to our work, mission, and digital content from medical providers, clinicians and other professionals who work with families of seriously ill children. They value our expertise and are hungry for the parent perspectives conveyed both in person and in our videos. In the past month, we have presented to the following groups and learned from what they shared back.

Primary Care Pediatricians in a large medical group in Portland, Maine:  We attended at the invitation of the Dr. Christine Bennett, a pediatrician who seeks to bring Advance Care Planning and “Discussions about Serious Illness” into the large primary care pediatrics practice where she works. While it is the case that pediatricians enter primary care to help raise healthy children, it is also the case that some children will be born or diagnosed with life-threatening conditions; and for these children and families, the role of the primary care pediatrician can be pivotal and life-changing. We know that first hand as our pcp made a huge difference in our family’s journey and did advance care planning, with lots of meaty conversations, with us. Several other CPN families similarly stress the importance of the pcp.

Part of the morning involved the pediatricians’ role-playing ‘the conversation’ with a parent. In the debrief that followed, several of them commented that they saw how well-suited they already are to talking with families about their care goals and values and what they want for their child. Indeed!

The Annual Primary Care Pediatrics Conference hosted by Massachusetts General Hospital for Children: In a similar vein, we joined Dr. Pat O’Malley to present on Advance Care Planning and Palliative Care to a group of pediatricians from around the country and world (one was from Brazil, where the Zika virus has wreaked havoc on families). One of the attending pediatricians shared his challenge of a particular family: the baby was recently diagnosed with a condition which is still always fatal in early childhood but the parents will only focus on their hope for his recovery and survival. Dr. O’Malley talked about framing the conversation as that delicate balance between Wishes and Worries – “I too wish for a miracle and I worry about what happens if we don’t get that miracle. Can we talk about what you wish for if that miracle doesn’t happen?”

New England Regional Genetics Group: We presented Courageous Parents Network and the value of Pediatric Palliative Care to a conference of genetic counselors. Several members of the audience commented that they always enjoy hearing most from the patient population. They were appreciative of CPN’s recent unit on genetic counseling, including the role of counseling in helping families consider having other children.

Hebrew College/Andover Newton Seminary: We spent a morning with Rabbinical and Christian chaplaincy students, taking about Courageous Parents Network, grief, personal narrative and family resiliency in the face of serious illness. Through our parent videos, we explored the role of a higher power in helping (or hindering) families with complicated decision-making. Every parent wants to know they have done the best they could for their child, and when the decisions are as burdensome and life-changing as they can be with these medically-fragile children, how does faith and religion help with that?

University of Massachusetts Medical School: We spent an afternoon with first and second year medical residents involved with the SideKicks program which helps medical students build relationships with pediatric patients and prepares them to become more empathic physicians. A meaty part of the Q&A that followed focused on prognostication. What is the value of reporting that there is an 85% survival rate – for a particular type of pediatric cancer, for example – when, for each individual family with a newly diagnosed child, the odds are really 100% or 0%. The students reported how valuable it is for them to get out of the academic setting and spend time directly with families in the intimacy of their home environment.

I have 2 take-aways from these recent activities:

These professionals are deeply committed to the well-being of children and the siblings and parents of these children. It is a heavy responsibility to be a professional who accompanies and leads these families; but they see it is a sacred privilege. As a parent, I am reminded of the beauty of the human spirit that manifests in a really good doctor, nurse, social worker, counselor, chaplain.

These professionals value the parent perspective and voices that Courageous Parents Network brings them as a means to deepen their understanding of the lived family experience and be the empathetic physicians they wish to be. It is really why they went into medicine in the first place: to help people; and Courageous Parents Network is there as part of that.

Onwards!