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Concerns of surrogate decision makers for acute brain injury patients: a US population survey

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Dec 16, 2020 version files 442.48 KB

Abstract

Objective: To determine whether groups of surrogates for severe acute brain injury (SABI) patients with poor prognosis can be identified based on their prioritization of goals-of-care (GOC) decisional concerns, an online survey of 1588 adults recruited via a probability-based panel representative of the US population was conducted.  

Methods: Participants acted as a surrogate for a GOC decision for a hypothetical SABI patient and were randomized to one of two prognostic scenarios: the patient likely being left with a range of severe functional disability (SD) or remaining in a vegetative state (VS). Participants prioritized a list of 12 decisional concerns via Best-Worst Scaling. Latent class analysis (LCA) was used to discover decisional groups.

Results: The completion rate was 44.6%; data weighting was conducted to mitigate nonresponse bias. For 792 SD respondents, LCA revealed four groups. All groups shared concerns regarding respecting patient wishes and minimizing suffering. The four groups were otherwise distinguished by unique concerns that their members highlighted: an older adult remaining severely disabled (34.4%), family consensus (26.4%), doubt regarding prognostic accuracy (20.7%), and cost of long-term care (18.6%).  For the 796 VS respondents, LCA revealed five groups. Four of the five groups had similar concern profiles to the four SD groups. The largest (29.0%) expressed the most prognostic doubt. An additional group (15.8%) prioritized religious concerns.

Conclusions: While surrogate decision makers for patients with SABI are concerned with respecting patient wishes and minimizing suffering, certain groups highly prioritize other specific decisional factors.  These data can help inform future interventions for supporting decision makers.