Determining “Best Interests” in End-of-Life Decisions for the Developmentally Disabled: Minnesota State Guardians and Wards


  • Mary Lay Schuster Writing Studies University of Minnesota
  • Ann L. Russell Lead Ethics Consultant, Hennepin County Medical Center, Minneapolis, MN
  • Dianne Bartels Professor Emeritus, Center of Bioethics, Department of Medicine, University of Minnesota-Twin Cities. PhD and RN
  • Holli Kelly-Trombley PhD student in Family Social Science, University of Minnesota-Twin Cities; practicing licensed therapist.



End of life, best interests, developmentally disabled, state wards, guardians, quality of life.



In this article, we report the results of a study of 129 case files and 16 guardian interviews on end-of-life decision making for Minnesota state wards who are developmentally disabled and are seldom competent to assert their wishes. We review the legal cases, legislative statutes, and professional standards that guide public guardians in deciding whether to begin, continue, or withdraw or withhold life-sustaining medical treatment from their wards. In particular, we reveal how the guardians' recommendations to the state Public Guardianship Administrator include such ableist assumptions as "normal," "natural," and "reasonable," but we also recognize the guardians' resistance to mind/body dichotomies and their expertise in determining quality of life in the context of how their wards live those lives.






Social Sciences, Policy, and Applied Research