Proxy Healthcare Decision-Making for Persons With Intellectual Disability: Perspectives of Residential-Agency Directors

Abstract

Directors of residential agencies for persons with intellectual disability in one U.S. state completed a self-administered, mailed survey to assess relative importance of information sources and decision factors in proxy healthcare decision-making. The most important sources were physician recommendations and input from the person; family input, care staff recommendations, and medical records were less valued. The person’s wishes and best interests and recommendations of medical experts were the most important decision factors. Less important were benefits and risks of the intervention, family wishes, and health status; little emphasis was accorded to religious affiliation and extra cost to agency. More research is needed on how best to elicit the wishes and determine what constitutes the “best interests” of these vulnerable individuals.

Quality of services and quality of life from service providers' perspectives: analysis with focus groups

“…2009). Yet, as Fisher et al . (2009) stated, more research is needed on how best to elicit the wishes and determine what constitutes the ‘best interests’ of vulnerable individuals.…”

A content analysis from a US statewide survey of memorable healthcare decisions for individuals with intellectual disability

“…As reported elsewhere in greater detail (Fisher et al, 2009), the vast majority of respondents rated the following three factors as “very important” in their decision-making process: the wishes of the individual (85% of respondents), assessment of the individual’s best interest (84–85%), and recommendations of medical experts (84%). Less emphasis was placed on benefits and risks of the intervention (61–71%), wishes of family (50–63%), and the individual’s health status (29–53%), and little emphasis on religious affiliation (22–39%), and extra cost to the agency beyond what the individual’s health insurance covered (11%).…”

“…As part of a larger project on surrogate decision-making, we asked agency directors several open-ended questions about their approach, and here we report our findings from an analysis of their narrative comments. The quantitative aspects of the survey are reported elsewhere (Fisher, Orkin, Green, Chinchilli, & Bhattacharya, 2009). …”

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

“…Service providers may also be challenged in providing an accurate description of the study if not thoroughly educated leaving the individual unable to fully understand the purpose of the study (Fisher et al . ).…”

“…End-of-life decision making by individuals with an intellectual disability is often a shared process (Kingsbury 2005). For example, shared decision making may involve the person with intellectual disabilities, a guardian, surrogate, formal caregiver, family member and medical personnel (Fisher et al 2009). The individual with intellectual disabilities voice can be lost when so many stakeholders are involved in the decision-making process.…”