“Consider the Following Situation,” Parental Treatment Preferences for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Plans

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 November 12, 2025

Abstract

American Journal of Hospice and Palliative Medicine®, Ahead of Print.
IntroductionCaring for a child with a rare disease frequently involves making difficult medical decisions with limited disease-specific information. Advance care planning can assist families in articulating their values and treatment preferences. We aimed ...