Intellectual Disabilities and Decision Making at End of Life: A Literature Review
Journal article
Åpne
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https://hdl.handle.net/11250/3067439Utgivelsesdato
2017Metadata
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Originalversjon
Kirkendall, A., Linton, K. & Farris, S. (2017). Intellectual Disabilities and Decision Making at End of Life: A Literature Review. Journal of Applied Research in Intellectual Disabilities, 30(6), 982–994. https://doi.org/10.1111/jar.12270Sammendrag
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.