NotesFAQContact Us
Search Tips
Peer reviewed Peer reviewed
Direct linkDirect link
ERIC Number: EJ1156911
Record Type: Journal
Publication Date: 2017-Nov
Pages: 13
Abstractor: As Provided
ISSN: ISSN-1360-2322
Intellectual Disabilities and Decision Making at End of Life: A Literature Review
Kirkendall, Abbie; Linton, Kristen; Farris, Saritha
Journal of Applied Research in Intellectual Disabilities, v30 n6 p982-994 Nov 2017
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.
Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail:; Web site:
Publication Type: Journal Articles; Information Analyses; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A