Parental Goals of Care for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Planning Conversations

Tamiko Younge, Hailey Moore, Jessica D. Thompkins, Maureen E. Lyon, Division of Neonatology, s National Hospital, Center for Translational Research, s National Research Institute, s National Hospital, Center for Genetic Medicine Research, s National Research Institute, s National Hospital, Department of Pediatrics, The George Washington University School of Medicine and Health Sciences

American Journal of Hospice and Palliative Medicine®

Published online on July 02, 2025

Abstract

American Journal of Hospice and Palliative Medicine®, Ahead of Print.
IntroductionCaregivers and surrogate decision makers for children with rare diseases often make complex medical decisions with limited prognostic information specific to their child’s disease. This diverse population may share common goals related to ...