Location

Greenspun College of Urban Affairs

Description

Presently, research suggests the involvement of individuals with intellectual disabilities (IDs) in making end-of-life (EOL) decisions appears to be minimal (Ellison & Rosielle, 2008).

The reasons for the lack of involvement include but are not limited to communication challenges, lack of education on caring for individuals with IDs by the medical community, incorrect assumptions that the individual lacks cognitive capacity to consent, and fear of legal consequences if formal caregivers are accused of not providing enough care. (Wagemans et al., 2010).

These factors then often culminate in the individual with IDs having decisions made for them by someone else, whom they may or may not know. Since they are often kept out of the decision-making process, individuals with IDs are at risk for undergoing unnecessary life extending treatments that prolong life while quite possibly quality of life diminishes (Wagemans et al., 2013).

Keywords

Caregivers; Consent (Law); Decision making; Informed consent (Medical law); Life and death, Power over--Decision making; People with mental disabilities; People with mental disabilities—Care; People with mental disabilities—Education; People with mental disabilities--Means of communication; Quality of life; Wills

Disciplines

Communication | Disability Law | Medicine and Health Sciences | Public Affairs, Public Policy and Public Administration

Language

English

 
Apr 21st, 1:00 AM Apr 21st, 2:30 AM

A Critical Analysis of Intellectual Disabilities and End-of-Life Decision Making

Greenspun College of Urban Affairs

Presently, research suggests the involvement of individuals with intellectual disabilities (IDs) in making end-of-life (EOL) decisions appears to be minimal (Ellison & Rosielle, 2008).

The reasons for the lack of involvement include but are not limited to communication challenges, lack of education on caring for individuals with IDs by the medical community, incorrect assumptions that the individual lacks cognitive capacity to consent, and fear of legal consequences if formal caregivers are accused of not providing enough care. (Wagemans et al., 2010).

These factors then often culminate in the individual with IDs having decisions made for them by someone else, whom they may or may not know. Since they are often kept out of the decision-making process, individuals with IDs are at risk for undergoing unnecessary life extending treatments that prolong life while quite possibly quality of life diminishes (Wagemans et al., 2013).