State Decision-Making Approaches in Seriously Ill People With Intellectual/Developmental Disability.

Abstract

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. Advance care planning (ACP) for this population is complicated by historical discrimination, ongoing inequities, and inconsistent legal frameworks. Supported decision-making offers a rights-based alternative to surrogate decision-making, preserving individuals' autonomy. This manuscript presents the case of Mr. A, an adult with Down syndrome, to illustrate practical ACP 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, Hospice and palliative care (HAPC) clinicians can promote appropriate autonomy for individuals with IDD, fostering inclusive serious illness discussions and ethical practices across diverse legal landscapes.