Welcome Complex and Moral Issues: End-of-Life Decisions

Welcome to Developmental Disabilities Administration Health Initiative (DDA HI) at Georgetown University Center for Child and Human Development (GUCCHD). This website is for guardians of people with significant intellectual disabilities who have been given the responsibility to make decisions on behalf of people who as a result of their disability, have never expressed their intentions about their end-of-life care or preference for life-sustaining treatments. The resources and materials on this website will help guardians in making difficult and complex decisions about end-of-life care for adults with significant intellectual disabilities.

Why Should Guardians Be Prepared To Make End-Of-Life Care Decisions?

Decision-making is a fundamental right, and no less so than for people with intellectual disabilities. As people with intellectual disabilities assume greater integration within their communities, they are afforded expanded opportunities for decision-making. The overwhelming majority of people with intellectual disabilities have the capacity to make their own decisions. They can seek the counsel of significant others, family members and friends when making difficult and complex decisions about their end-of-life care and decisions related to life-sustaining treatments. However, the people whose cognitive functions are so limited that they may never be able to express their preferences for these decisions. The exercises in this website will assist guardians to prepare for end-of-life decisions that reflect the personality, beliefs, and values of people who are unable to make decisions for themselves.

For questions and personal assistance call the Developmental Disabilities Health Initiative at (202) 687-8544 or email DDAHI@georgetown.edu