In conditions, such as dementia, stroke, or critical illness, clinicians often rely on substituted judgment through a surrogate to assist in medical decision making. Surrogates may face tough decisions regarding whether to pursue or forego surgery, tube feeding, and cardiopulmonary resuscitation. Surrogates often have little confidence in their decision (Majesko et al., Reference Majesko, Hong, Weissfeld and White2012), though substituted judgment relies on the surrogate to determine the decision that the patient would have made. Prior studies suggest that surrogates predict patient preferences with only 68% accuracy (Shalowitz et al., Reference Shalowitz, Garrett-Mayer and Wendler2006). This month's study by Bravo and colleagues (Bravo et al., Reference Bravo, Sene and Arcand2017) explores differences in quality-of-life assessments between patients and surrogates as a potential explanation for surrogate inaccuracy.
In the study, 235 pairs of healthy older adults and their designated surrogates rated older adult quality-of-life in four health states (current health, mild/moderate stroke, incurable brain cancer, and severe dementia) and the desire for life-sustaining interventions (intravenous antibiotics, gallbladder surgery, tube feeding, and cardiopulmonary resuscitation) in each of the four health states. Interestingly, 46% of participants reported having previous discussions of their healthcare preferences with their surrogate. Despite these discussions, there was significant discrepancy in quality-of-life assessments. Surrogates both underestimated quality-of-life in the current health state and overestimated quality-of-life in mild/moderate stroke and incurable brain cancer. Surrogate accuracy in predicting patient-perceived quality-of-life varied from 36%–71%, with greatest concordance in severe dementia. Surrogate accuracy in predicting desire for treatment was slightly better than a flip of a coin (55% in severe dementia, the condition with greatest concordance). Discrepant quality-of-life ratings were associated with inaccuracy in predicting desire for treatment in the three hypothetical conditions. Effect sizes were small, however. Importantly, overestimations of quality-of-life were associated with overestimations of desire for treatment.
The study has important implications for medical decision making and care delivery. Simply naming a specific surrogate decision maker has not previously been shown to improve surrogate accuracy (Shalowitz et al., Reference Shalowitz, Garrett-Mayer and Wendler2006). Accuracy was similarly variable in this study of designated surrogates. In their current form, discussions between patients and surrogates also do not improve accuracy. The authors suggest discussing anticipated quality-of-life with patients in the presence of a surrogate. While this approach can be applied in scenarios that are common (stroke) or relevant to a specific patient (severe dementia in a patient with mild cognitive impairment), every scenario cannot be predicted. Moreover, hypothetical quality-of-life assessments and decisions are difficult even for patients. Quality-of-life is a fluid construct, shaped by current health, relationships, care location, prior experiences, and other factors. Quality-of-life assessment and care preferences change over time as physical, emotional, and cognitive states evolve. Discussing personal values and identifying a patient's source of meaning or satisfaction may therefore be as important as discussing hypothetical scenarios. Asking “What matters most to you?” or “What brings your life meaning?” in the surrogate's presence may prepare surrogates for making in-the-moment decisions when a scenario is no longer hypothetical (Sudore and Fried, Reference Sudore and Fried2010).
The study raises additional questions. The small effect size suggests that unidentified factors contribute to inaccuracy. Surrogates’ projecting what they would want for themselves or what they would want for their loved one in a given scenario may be sources of treatment discrepancy. It may also be pertinent to understand whether discrepancy varies for treatment decisions viewed as straightforward (antibiotics) versus more complex (surgery, tube feeding, and cardiopulmonary resuscitation). Identifying scenarios and treatments with greatest discrepancy, in addition to sources of patient-surrogate discrepancy, may help clinicians maximize discussions.
This study of surrogate inaccuracy builds upon literature that highlights the challenges of substituted judgment. Predicting a patient's desire for treatment based on speculation about their quality-of-life is, in some ways, a guess of a guess. Understanding and addressing sources of discrepancy may improve surrogate accuracy, and at the very least, better prepare surrogates to make difficult decisions when the time comes.
Conflict of interest
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In conditions, such as dementia, stroke, or critical illness, clinicians often rely on substituted judgment through a surrogate to assist in medical decision making. Surrogates may face tough decisions regarding whether to pursue or forego surgery, tube feeding, and cardiopulmonary resuscitation. Surrogates often have little confidence in their decision (Majesko et al., Reference Majesko, Hong, Weissfeld and White2012), though substituted judgment relies on the surrogate to determine the decision that the patient would have made. Prior studies suggest that surrogates predict patient preferences with only 68% accuracy (Shalowitz et al., Reference Shalowitz, Garrett-Mayer and Wendler2006). This month's study by Bravo and colleagues (Bravo et al., Reference Bravo, Sene and Arcand2017) explores differences in quality-of-life assessments between patients and surrogates as a potential explanation for surrogate inaccuracy.
In the study, 235 pairs of healthy older adults and their designated surrogates rated older adult quality-of-life in four health states (current health, mild/moderate stroke, incurable brain cancer, and severe dementia) and the desire for life-sustaining interventions (intravenous antibiotics, gallbladder surgery, tube feeding, and cardiopulmonary resuscitation) in each of the four health states. Interestingly, 46% of participants reported having previous discussions of their healthcare preferences with their surrogate. Despite these discussions, there was significant discrepancy in quality-of-life assessments. Surrogates both underestimated quality-of-life in the current health state and overestimated quality-of-life in mild/moderate stroke and incurable brain cancer. Surrogate accuracy in predicting patient-perceived quality-of-life varied from 36%–71%, with greatest concordance in severe dementia. Surrogate accuracy in predicting desire for treatment was slightly better than a flip of a coin (55% in severe dementia, the condition with greatest concordance). Discrepant quality-of-life ratings were associated with inaccuracy in predicting desire for treatment in the three hypothetical conditions. Effect sizes were small, however. Importantly, overestimations of quality-of-life were associated with overestimations of desire for treatment.
The study has important implications for medical decision making and care delivery. Simply naming a specific surrogate decision maker has not previously been shown to improve surrogate accuracy (Shalowitz et al., Reference Shalowitz, Garrett-Mayer and Wendler2006). Accuracy was similarly variable in this study of designated surrogates. In their current form, discussions between patients and surrogates also do not improve accuracy. The authors suggest discussing anticipated quality-of-life with patients in the presence of a surrogate. While this approach can be applied in scenarios that are common (stroke) or relevant to a specific patient (severe dementia in a patient with mild cognitive impairment), every scenario cannot be predicted. Moreover, hypothetical quality-of-life assessments and decisions are difficult even for patients. Quality-of-life is a fluid construct, shaped by current health, relationships, care location, prior experiences, and other factors. Quality-of-life assessment and care preferences change over time as physical, emotional, and cognitive states evolve. Discussing personal values and identifying a patient's source of meaning or satisfaction may therefore be as important as discussing hypothetical scenarios. Asking “What matters most to you?” or “What brings your life meaning?” in the surrogate's presence may prepare surrogates for making in-the-moment decisions when a scenario is no longer hypothetical (Sudore and Fried, Reference Sudore and Fried2010).
The study raises additional questions. The small effect size suggests that unidentified factors contribute to inaccuracy. Surrogates’ projecting what they would want for themselves or what they would want for their loved one in a given scenario may be sources of treatment discrepancy. It may also be pertinent to understand whether discrepancy varies for treatment decisions viewed as straightforward (antibiotics) versus more complex (surgery, tube feeding, and cardiopulmonary resuscitation). Identifying scenarios and treatments with greatest discrepancy, in addition to sources of patient-surrogate discrepancy, may help clinicians maximize discussions.
This study of surrogate inaccuracy builds upon literature that highlights the challenges of substituted judgment. Predicting a patient's desire for treatment based on speculation about their quality-of-life is, in some ways, a guess of a guess. Understanding and addressing sources of discrepancy may improve surrogate accuracy, and at the very least, better prepare surrogates to make difficult decisions when the time comes.
Conflict of interest
None.