Parental goals of care for children with rare diseases: A content analysis of pediatric advance care planning conversations

Parental goals of care for children with rare diseases: A content analysis of pediatric advance care planning conversations
American Journal of Hospice and Palliative Medicine; by Tamiko Younge, Hailey Moore, Jessica D. Thompkins, Maureen E. Lyon; 7/25
Caregivers and surrogate decision makers for children with rare diseases often make complex medical decisions with limited prognostic information specific to their child’s disease. Our objective was to describe goals of care as explored through advance care planning conversations among the high-risk and high-need community of families with children with rare diseases. We identified 13 goals of care themes: maintaining stability, being happy, moving the body, thriving along their own path, reducing interventions, living a long life, curing disease, avoiding complications, connecting with others, having a village, an understanding world, knowing our child, and partnering with our medical team. Conclusions:Parents of children with rare diseases have a multitude of holistic goals related to their child’s care. High-quality advance care planning conversations may help families articulate these goals.