Accuracy in Surrogate End‐of‐Life Medical Decision‐Making: A Critical Review

Abstract

Background Increasing age is accompanied by a greater need for medical decisions, due in part to age‐related increases in chronic disease and disability. In later life, medical decisions about end‐of‐life care in particular are likely. However, a significant percentage of these decisions are made by surrogate decision‐makers. “Surrogates” are most often instructed to use the substituted judgment standard and make decisions that patients would choose if they were able. Whether surrogates make decisions that adequately match patients’ preferences is a concern. Surrogates are generally poor predictors of patient preferences (Shalowitz et al., 2006). However, no critical review of this literature has yet been published. Method A critical review was conducted to summarise and provide a methodological critique of 25 studies. Results These studies generally concur that patient–surrogate agreement on medical decisions is poor. However, this conclusion is qualified by inconsistencies in methodological quality and the potentially limited generalisability of these findings. Conclusions Clinical research incorporating standardised hypothetical decision‐making protocols, as well as triangulated data collection methods, would bolster confidence in future findings. Investigations prioritising the surrogate decision‐making process, rather than solely the decisional outcome, could better identify ways to improve the decision‐making process for incapacitated patients.

Exploring variables related to medical surrogate decision-making accuracy during the COVID-19 pandemic

“…In concordance with Hare et al [22] , and evidence from the surrogate decision-making accuracy literature [40] , surrogates predicted patients’ preferences with poor accuracy. This finding adds to the body of evidence suggesting that individuals who make decisions for patients in end-of-life situations may not be trusted to consistently select the patient’s desired treatment (Torke, 2008).…”

“…The kappa statistic also has limitations with regards to its interpretation as a measure of chance-corrected agreement (e.g., the “kappa paradox,” [10] ). However, this statistic was reported in order to maintain consistency with the surrogate decision-making accuracy literature to date (e.g., Shalowitz, 2006; [6] , [30] , [40] ) and enable comparisons with prior studies.…”

Why Are They Wrong? Exploring Surrogates’ Accuracy When Predicting Patient Treatment Preferences

“…In concordance with Hare and colleagues' (1992) findings, and a preponderance of evidence from the surrogate decision-making accuracy literature (Shalowitz, 2002;Spalding, 2020), surrogates predicted patients' preferences with poor accuracy across the decision vignettes. Specifically, surrogates predicted preferences with accuracy that was significantly worse than that which would be expected by chance alone.…”

Neuroethics across the Disorders of Consciousness Care Continuum

“…174 While the process of "substituted judgment" (wherein surrogates of incapacitated patients are tasked with evaluating what a patient would have decided) provides some guidance in the absence of an advance directive, emerging evidence suggests that surrogates are often unable to correctly predict patients' preferences or harbor misinformed beliefs about expected quality of life following injury and disease. [175][176][177][178][179][180][181][182][183][184][185][186] Furthermore, many states lack default surrogate statutes altogether 187 ; in such states, if a patient did not previously specify a legal healthcare proxy, there is no automatic presumption of who ought to be regarded as a surrogate. Lengthy legal processes may be required to establish who should serve in that role.…”