Purpose: This statewide survey of residential agencies in Pennsylvania identifies key factors perceived by directors as important in proxy healthcare decision-making.
Methods: PA state licensed residential facilities were surveyed using Dillmans's Total Survey Method. The survey consisted of closed and open-ended questions where participants reported decisions involving medical and surgical procedures, including cancer care, end of life, and residential placement issues. Response options to discern ethical concerns (e.g. respect for autonomy, beneficence, or justice), included: “rely on your best judgment,” “decide as a team with others,” “do as medical expert suggests,” “go along with family wishes,” “follow state regulations and policies,” and “have knowledge of individual wishes.”
Results: 158 (60%) of the 262 identified state agencies completed the survey. Respondents were middle aged (mean, 49 years; 95% Confidence Interval (CI): 48-51), predominantly females (54%), white (95%) with an average of nine years experience (95% CI: 8-10) in surrogate decision-making. Factors rated commonly as “very important” in decision-making included the wishes of the individual with MR (85.1%), assessment of the individual's best interests (83.5%), and recommendations of medical experts (83.8%). Directors placed less emphasis on benefits and risks of interventions (61-71%), family wishes (50-63%), and individual's health status (29-53%), and little emphasis on the individual's religious affiliation (22-39%), intervention's logistics (21-36%), and intervention's cost to agency (11%).
Conclusion: Proxy decision-making involves several challenges, especially with concomitant involvement of the individual with MR in decision-making, given the rule of “self determination.” While recommendations by medical experts rank highly in decision-making, according to directors, individuals with MR “usually do not make the best decision for their health – usually out of fear of the needed procedure.” There is a lack of understanding of how decisions are made when factors conflict with one another. While findings from this study recognized specific factors in decision-making by proxy, it also identified the decision makers concerns' about stigma, lack of knowledge and inadequate understanding by health care providers of the special needs of this population. Knowledge of these factors will assist health care providers to better advocate for their clients and provide better quality services.