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

Mary Lay Schuster, Ann L. Russell, Dianne Bartels, Holli Kelly-Trombley



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.


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

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Copyright (c) 2015 Mary Lay Schuster, Ann L. Russell, Dianne Bartels, Holli Kelly-Trombley

Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated. 

Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.

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ISSN: 2159-8371 (Online); 1041-5718 (Print)