Courageous Parents Network Courageous Parents Network

Arika Patneaude is a licensed clinical social worker who is the director of bioethics and pediatric palliative care at Seattle Children’s Hospital. She is also a passionate advocate for health equity and awakening to unconscious bias in medicine and the impact it has on underresourced and historically excluded populations. I experienced her passion as a Call to Action in multiple ways.

Ashley and Theron are parents of three children, including Viggo Rick, who died at 6 months of complications related to Trisomy 5p. They offer so much wisdom to other caregivers and suggestions to clinicians about what helps (and what hinders) parents of newborns born with very rare, life-limiting conditions.

Mom Amy and her daughter Lauren's palliative care doctor, Erin, talk about Erin's care of 7-year old Lauren: how she saw her as the full child that she was -- not just a cancer diagnosis -- and how she managed Lauren's 'total pain' during her 3 years of treatment for cancer, including addressing Lauren's fear of dying.

CPN's Blyth Lord talks with child and adolescent psychiatrist Elena Lister about the importance, value and life-long positive impact of talking with children honestly about illness and death. "What is mentionable is manageable." This far ranging conversation focuses especially on supporting siblings of children who are sick or who have died from illness.

Jerris advocated for his daughter Faith from her diagnosis at age 4 with osteosarcoma, through 23 major surgeries, side effects, setbacks, and complications, until her death shortly after her 18th birthday. Towards the end, they met Dr. Bob Macauley who helped get Faith home. Jerris emphasizes the need to create a space for dads as advocates and emotional caregivers.

CPN's interview with Pediatric Palliative Care NP's Luke and Sean, Valley Children's Hospital, Madera, CA