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Most individuals with intellectual disability can participate in treatment decisions when they are very ill or approaching the end of life. Decision-making is a fundamental right, and no less so than for people with intellectual disabilities. There are times, however, when guardians need to become involved in morally complex decisions with or on behalf of the individual who is very ill. Georgetown University Center for Child and Human Development- UCEDD has developed a website, Complex Moral Issues: End-of-Life Decisions for Adults with Significant Intellectual Disabilities, to help guardians who have been given the responsibility to assist people who have never been able to express their intentions about end-of-life care and life-sustaining treatments due to the extent of their cognitive disability and limited ability to communicate abstract and complex messages.
The website includes a Questions and Answers page on issues that a guardian may encounter, such as pain, palliative care, hospice, the role of the guardian and the hospital ethics committee. It has a Review of Guardianship Statutes for all 50 states and the District of Columbia and a three-step process ("Think-Act-Plan") for preparing for end-of-life decisions. This process includes an Ethics Workup that provides a framework for applying ethical decision-making about health care treatment on another’s behalf. This framework contains case analysis of five scenarios. It also includes a Guided Interview to assist decision-makers who care for a person with significant intellectual disabilities before they meet with healthcare professionals and a Worksheet to assess various medical decisions and their impact on quality of life. The website also has a Glossary of common terms and links to further explanatory information and a Reference Guide with annotations focused on intellectual disability, end-of-life decision making, and proxy decision making standards. These resources were developed in collaboration with the Georgetown School of Nursing and Health Sciences (Principal Investigator: Carol R. Taylor, RN, PhD). Please contact Marisa Brown, MS, RN, Georgetown UCEDD, Director DDA Health Initiative, for further information (firstname.lastname@example.org).The website may be accessed at: