Disability Perspectives on Health Care Planning and Decision-Making

Background: Despite the needs for people with disabilities to plan for times of serious illness in order to receive good end-of-life care and to have their wishes respected, this community has often been overlooked in the extensive research, programs, and policies regarding advance care planning and palliative care. This article reviews the literature addressing the significance of disability on health care decision-making, advance care planning, and end-of-life care. Special attention is provided to assessing the life values or preferences of persons with intellectual disability with limited decisional capacity. Recommendations are suggested for more inclusionary dialogue, research to better inform palliative care services, and new planning models for individuals with limited capacity.