Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity

Abstract

Medical and technological advances have resulted in a growing cohort of children with medical complexity (CMC), many of whom would not have survived previously.^1,2 These children are often defined as having high family-identified needs, complex chronic disease necessitating specialized care, functional disability, and high health care utilization.³ They are among the most medically fragile pediatric patients and are at high risk of morbidity and mortality during childhood.^3,4 Given their baseline medical and technological needs, decision-making regarding medical interventions that optimally balances quantity and quality of life is challenging.