The majority of respondents endorsed the possibility of incorporating a PPP into the process of shared decision-making based on its potential to increase surrogates' predictive accuracy and/or reduce surrogate distress. These data provide strong patient support for further research to assess whether, in practice, the use of a PPP can increase the chances that incapacitated patients receive the treatments they prefer and reduce the burden of making decisions on their surrogates.

Objective Clinical practice aims to respect patient autonomy by basing treatment decisions for incapacitated patients on their own preferences. Yet many patients do not complete an advance directive, and those who do frequently just designate a family member to make decisions for them. This finding raises the concern that clinical practice may be based on a mistaken understanding of patient priorities. The present study aimed to collect systematic data on how patients prioritize the goals of treatment decision making. Method We employed a self-administered, quantitative survey of patients in a tertiary care center. Results Some 80% or more of the 1169 respondents (response rate = 59.8%) ranked six of eight listed goals for treatment decision making as important. When asked which goal was most important, 38.8% identified obtaining desired or avoiding unwanted treatments, 20.0% identified minimizing stress or financial burden on their family, and 14.6% identified having their family help to make treatment decisions. No single goal was designated as most important by 25.0% of participants. Significance of Results Patients endorsed three primary goals with respect to decision making during periods of incapacity: being treated consistent with their own preferences; minimizing the burden on their family; and involving their family in the decision-making process. However, no single goal was prioritized by a clear majority of patients. These findings suggest that advance care planning should not be limited to documenting patients’ treatment preferences. Clinicians should also discuss and document patients’ priorities for how decisions are to be made. Moreover, future research should evaluate ways to modify current practice to promote all three of patients primary goals for treatment decision making.

Objective: Current practice frequently fails to provide care consistent with the preferences and values of decisionally-incapacitated, critically ill patients. It also imposes significant emotional burden on their surrogates. Algorithmic-based patient preference predictors (PPPs) have been proposed as a way to address these two concerns. While previous research found that patients strongly support the use of PPPs, the views of surrogates are unknown. This study assesses the views of experienced surrogates regarding the use of PPPs as a means to improve treatment decision making for incapacitated patients.Setting: Two academic medical centers and two community hospitals.Subjects: Experienced Surrogates [n=26].Interventions: An initial quantitative survey followed by an in-depth interview and a final quantitative survey.Measurements: Overall level of support for PPPs and views on how a PPP should be used, if at all, in practice.Main Results: Overall, 21 participants supported the use of PPPs. The remaining five indicated that they would not use a PPP because they made decisions based on the patient’s best interests, not based on which treatments the patient would choose for themselves. Some respondents expressed concern that PPPs might be used to deny expensive care or be biased against minority groups. Finally, 24 respondents indicated that surrogates, not patients, should decide how treatment decisions are made, including whether and how to use PPPs.Conclusions: Surrogates, like patients, strongly support the use of PPPs as a means to improving decision-making for incapacitated patients. These findings provide support for developing a PPP and assessing its use in practice. At the same time, patients and surrogates disagree over whose preferences should determine how treatment decisions, including whether to use a PPP, are made. These findings reveal a fundamental disagreement regarding the guiding principles for surrogate decision-making that need to be addressed by attempts to improve current critical care practice.

Background Current practice relies on patient-designated and next-of-kin surrogates, in consultation with clinicians, to make treatment decisions for patients who lose the ability to make their own decisions. Yet, there is a paucity of data on whether this approach is consistent with patients’ preferences regarding who they want to make treatment decisions for them in the event of decisional incapacity. Methods Self-administered survey of patients at a tertiary care center. Results Overall, 1169 respondents completed the survey (response rate=59.8%). Of the 229 respondents who had previously designated a surrogate, 78.2% wanted their surrogate to make treatment decisions in the event of decisional incapacity, whereas 21.8% wanted their doctors to make treatment decisions. Of the 822 respondents who had not designated a surrogate, 66.1% wanted their family to make treatment decisions, whereas 33.9% wanted their doctors to make treatment decisions. The most common explanation provided for why respondents wanted their surrogate or family to make treatment decisions for them in the event of decisional incapacity was the belief that loved ones knew the patient‘s treatment preferences. Conclusions Contrary to current practice, 33.9% of respondents who had not designated a surrogate, and 21.8% of those who had designated a surrogate indicated that they wanted their doctors to make treatment decisions for them in the event of decisional incapacity. Moreover, many of those who wanted their surrogates or family members to make treatment decisions explained this preference by citing a belief that loved ones knew the patient’s treatment preferences. This belief is undermined by prior research which suggests that surrogates and family members frequently are unable to predict which treatments their charges would want. Future research should assess these two concerns with current practice and, where necessary, identify approaches to address them.

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