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Intellectual Disabilities and Decision Making at End of Life: A Literature Review
Abbie Kirkendall1, Kristen Linton2, Saritha Farris3
1Greenspun College of Urban Affairs, School of Social Work, University of Nevada at Las Vegas, Las Vegas, NV, USA.
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.
