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Intellectual Disabilities and Decision Making at End of Life: A Literature Review
Author(s) -
Kirkendall Abbie,
Linton Kristen,
Farris Saritha
Publication year - 2017
Publication title -
journal of applied research in intellectual disabilities
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.056
H-Index - 63
eISSN - 1468-3148
pISSN - 1360-2322
DOI - 10.1111/jar.12270
Subject(s) - intellectual disability , psychology , medical model of disability , limiting , foundation (evidence) , empirical research , actuarial science , business , political science , psychiatry , law , engineering , mechanical engineering , philosophy , epistemology
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.