Surrogate Decision Making

Clinical Center

Investigators

Linked publications & trials

Abstract

Many patients are unable to make medical decisions for themselves (Raymont V, et al 2004; Silveira MJ, et al 2010). Current clinical practice relies on shared decision-making between clinicians and surrogates to make treatment decisions for these patients. This decision-making process is meant to promote medical care that accords with the patient's own preferences and values. However, empirical data suggest that this approach faces two significant challenges. First, surrogates and clinicians have trouble predicting which treatment course patients would have chosen. Second, surrogates often experience significant emotional distress as a result of making treatment decisions. The goal of the present project is to identify ways to address these concerns and, thereby, improve surrogate decision-making. We have proposed to supplement the process of shared decision-making with a Patient Preference Predictor (PPP). A PPP would provide a prediction of which treatment a given patient would want based on the treatment preferences of similar patients in similar circumstances. Additional information might be obtained from the patient's own medical records, as well as their on-line activities. Preliminary research suggests that incorporating a PPP into the shared decision-making process might help to improve the extent to which medical decisions reflect the preferences of decisionally incapacitated patients and alleviate some of the emotional burden experienced by their surrogates and clinicians. A survey of patients that we conducted found that, if the use of the PPP would increase the predictive accuracy of the shared decision-making process, a majority of patients believe that incorporating it into the shared decision-making process would be beneficial (Rid et al, 2014). Based on these findings, we interviewed surrogates who have been involved in making decisions for an incapacitated patient to explore their perspectives on the PPP and how to incorporate it into medical decision-making. This study found that surrogates, like patients, are largely supportive of the use of a PPP. However, the findings also suggest that there will be two important challenges to address. First, a number of surrogates indicated that they make decisions based on what they think is in the best medical interests of the patient, not based on what decision the patient would have made for themselves. Second, surrogates indicated that they should have the final say in what decisions are made. These findings are in tension with previous findings from our group that patients believe their own treatment preferences and values should determine which treatments they receive during periods of decisional incapacity. In future work, we plan to consider how to address this tension.