Association between Digital Delegation and Medical Surrogate Decision-Making Behaviors among Caregivers in the US: A Cross-sectional Study

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Abstract

Rapid population aging and the increasing digitization of everyday activities are expanding caregivers’ responsibilities beyond physical caregiving to include serving as digital proxies to help manage and use patients’ online accounts. Digital proxying entails navigating sensitive decisions that often overlap conceptually and practically with traditional surrogate end-of-life decision-making (SDM); however, little empirical research has examined whether and how digital proxies engage in advance care planning-relevant behaviors. We conducted a national online survey of U.S. adults to assess lifetime experiences with digital financial and medical proxying, physical caregiving, and engagement in SDM-related behaviors. Analyses of 591 respondents who reported providing physical care showed that compared with non-proxies, formal digital proxies – caregivers with institutional or explicitly authorized access to patients’ digital accounts – were significantly more likely to have engaged in SDM behaviors (odds ratio (OR): 4.73, p = 0.01), and to have greater extent of SDM discussion (average marginal effect (AME) = 1.14, p = 0.06). Similar patterns emerged among caregivers serving as financial digital proxies and legal agents. Despite high levels of engagement, nearly 40% of formal medical proxies reported not having fully discussed SDM roles with relevant parties. Moreover, informal medical proxies – caregivers who assisted with digital account management without formal authorization, reported more missed opportunities to engage in SDM behaviors. Together, these findings indicate that engagement in advance care planning-related SDM varies systematically with digital delegation behaviors. Digital proxy roles may therefore represent an important and underutilized entry point for interventions designed to support caregivers in eliciting patient values and making preference-sensitive decisions.

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