Intellectual Disabilities and Decision Making at End of Life: A Literature Review

Abstract

Background Individuals with an intellectual disability are vulnerable to having end-of-life decisions made for them merely due to the presence of a disability. As a result, decisions made by others may not reflect the exact wishes of the individual.

Methods This review examines literature on individuals with an intellectual disability in making end-of-life decisions from the years 2000 to 2014. A total of 38 articles were found with 12 articles having a direct focus on end-of-life decision making.

Results The emerging themes include the following: (i) assumption of lack of capacity, (ii) inconsistency in evaluating capacity and communication challenges and (iii) third party decisions.

Conclusions Earlier discussions about end-of-life planning before the diagnosis of a life-limiting illness would be beneficial. Lacking is a consistent approach to determining capacity for individuals with an intellectual disability. The findings from this review provide a foundation for a decision tree in end-of-life decision making for individuals with an intellectual disability.