Purpose: The purpose of this study was to understand and catalog the proxy decision making process from the perspective of residential agency directors. Based on their response, we devised a model to identify the key members involved in decision making by proxy and delivery of care and also categorize key factors that can improve decision making and caregiving.

Methods: We conducted a survey of 262 directors of licensed residential agencies in Pennsylvania using Dillman’s Total Survey Method to assess which factors influenced proxy decision-making on behalf of individuals with MR. Four focus group meetings were completed to validate survey findings. Survey data were analyzed using SPSS, and we transcribed all focus group interviews and performed content analysis to determine common themes. Individual interviews were analyzed using conjoint analysis to identify the relative contribution of pre identified factors in decision making for chronic dental care and end of life decision making. The analysis also identified key members involved in the proxy decision making process and their importance in decision making.

Results: 158 (60%) of the 262 identified state agencies completed the survey. Respondents were middle aged (mean, 49 years) with an average of nine years experience (95% CI: 8-10) in surrogate decision-making. 18 of 20 directors invited to the focus groups participated. 50 agency directors participated in the individual interviews. Key members identified in the decision making process were the individual themselves, medical experts, the agency, the individuals’ family, and guidelines from the state. Barriers to decision making and access to care included ambiguous state guidelines, lack of confidence in medical recommendations, difficulty in deciding “best interest” and lack of sensitivity in care givers.

Conclusion: Residential agency directors consider what is best for the individual as well as the individuals’ wishes when making health care decisions for those with ID. However, getting the individual to be an active participant in the decision making process could be challenging. Sometimes individuals do not make the best decisions for themselves, mostly out of fear of a given procedure. Family involvement in decision making is not always practical, particularly if the family members have not been in touch with the individual for a long time. State guidelines are ambiguous with respect to issues involving informed consent and offer little choice in end of life decision making, especially if the condition is not terminal. Our findings also identified a knowledge gap among health care workers in relation to this vulnerable population. Educational programs on issues surrounding “informed consent”, “legal obligations”, and “advanced directives” are needed. “Sensitivity training” in healthcare curriculums may improve communication, develop confidence in caregivers and improve treatment outcomes and quality of life for those with ID. Further research is needed on how best to assist decision makers in making these difficult choices.

Future studies will focus on improving quality of life and end of life decision-making, as individuals with ID are aging, outliving family caregivers, and increasingly requiring the services of residential agencies and consequently proxy decision makers.