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

J Appl Res Intellect Disabil. 2017 Nov;30(6):982-994. doi: 10.1111/jar.12270. Epub 2016 Jul 25.


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.

Keywords: barriers; capacity; decision making; end-of-life; informed consent; intellectual disability.

Publication types

  • Review

MeSH terms

  • Communication*
  • Decision Making*
  • Disabled Persons
  • Health Knowledge, Attitudes, Practice
  • Humans
  • Intellectual Disability / psychology*
  • Patient Participation*
  • Terminal Care / psychology*