State decision-making approaches in seriously ill people with intellectual/developmental disability

State decision-making approaches in seriously ill people with intellectual/developmental disability
Journal of Pain and Symptom Management; by Matthew Castillo, Arlen G. Gaines, Caitlyn M. Moore, Cynthia X. Pan; 8/25
Hospice and palliative care (HAPC) clinicians supporting individuals with intellectual and developmental disabilities (IDD) navigate complex decision-making pathways while promoting autonomy and dignity. Approximately 1–3% of the global population lives with IDD, and many healthcare professionals feel ill-prepared to meet their unique needs, particularly in serious illness planning. This manuscript presents the case of Mr. A, an adult with Down syndrome, to illustrate practical ACP [advance care planning] and supported decision-making considerations across Maryland, New York, and Pennsylvania. Each state’s legal requirements for appointing a healthcare agent (HCA), determining capacity, and avoiding guardianship are discussed. Through thoughtful ACP and supported decision-making, HAPC clinicians can promote appropriate autonomy for individuals with IDD, fostering inclusive serious illness discussions and ethical practices across diverse legal landscapes.