Perspectives on End-of-Life Decision Making for Adults with Intellectual Disabilities




Hughes, Caroline

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This thesis explores different perspectives on the end-of-life care and decision-making process for people with intellectual disabilities through a grounded theory, interview-based research methodology. After learning about the challenges inherent in end-of-life care, particularly in situations where patient input is limited due to factors such as intellectual disability, the perspectives of people who were present with the patient hold value in dictating qualities of the process. A series of semi-structured interviews were conducted, and nine emergent themes arose that illustrated aspects of the process that were either beneficial or harmful to the respondent and the patient and/or loved one. While reviewing and accumulating the findings from these interviews, these themes were compared to the literature surrounding the topic to offer possible solutions. This thesis also examines the need within the medical education system for increased teaching about the treatment of patients with disabilities.



Disability. End-of-life care. Decision making.