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

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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.

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