Welcome to Complex Moral Issues: End-of-Life Decisions for Adults with Significant Intellectual Disabilities, a website devoted to guardians who have been given the responsibility to make decisions on behalf of 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 concomitant restrictions upon their ability to communicate abstract and complex messages.
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. People with intellectual disabilities seek the counsel of significant others, family members and friends when making difficult and complex decisions about health care choices including end-of-life care and decisions related to life-sustaining treatments. The overwhelming majority of people with intellectual disabilities have the capacity to make their own decisions.
This site includes the following resources:
- A Questions and Answers page on topics related to people whose cognitive functioning is so limited that they have never been able to express their preferences for decisions that require abstract and complex reasoning.
- A review of Guardianship Statutes for all 50 states and the District of Columbia.
- A 3-step process ("Think-Act-Plan") for preparing for end-of-life decisions:
- 1. "Think" - 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 5 scenarios.
- 2. "Ask" - A Guided Interview to assist decision-makers who care for a person with significant intellectual disabilities before they meet with healthcare professionals.
- 3. "Plan" - A Worksheet that is to be used to assess various medical decisions and their impact on quality of life.
- A Glossary of common terms and links to further explanatory inform ai ton.
- A Reference Guide with annotations focused on intellectual disability, end-of-life decision making, and proxy decision making standards.
This work was supported by Georgetown University through a grant to the Georgetown University School of Nursing and Health Studies. Project faculty included:
- Carol Taylor PhD, RN, Professor, School of Nursing and Health Studies, Kennedy Institute of Ethics Scholar: principle investigator.
- Marisa C. Brown, MSN, RN Georgetown University Center for Child and Human Development - University Center for Excellence in Developmental Disabilities
- Erin Leveton, JD, Adjunct Professor, Georgetown University Law Center, & State Office of Disability Administration, D.C. Department on Disability Services
- Laura Guidry Grimes, Doctoral Candidate and Teaching Associate in Philosophy, Georgetown University.
The work was guided by input from members of an advisory committee that included:
- Project ACTION!: Thomas Mangrum, Jr. and Steven Powell
- Arc of DC: Mary Lou Meccariello
- DC Coalition of Service Providers: Danielle Darby
- Quality Trust for Individuals with Developmental Disabilities: Morgan Whitlach
- Georgetown University Kennedy Institute of Ethics: Arthur Kopelman, MD, Loretta Kopelman, PhD, and Laura Bishop, PhD
- Providence Hospital: Matt Lukasiak
- DC Developmental Disabilities Administration: Neha Patel, Deputy General Counsel