Concerns of surrogate decision makers for patients with acute brain injury: A US population survey.

Abstract:

OBJECTIVE:To determine whether groups of surrogates for patients with severe acute brain injury (SABI) with poor prognosis can be identified based on their prioritization of goals-of-care (GOC) decisional concerns, an online survey of 1,588 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 patient with SABI and were randomized to 1 of 2 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 4 groups. All groups shared concerns regarding respecting patient wishes and minimizing suffering. The 4 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 5 groups. Four of the 5 groups had similar concern profiles to the 4 SD groups. The largest (29.0%) expressed the most prognostic doubt. An additional group (15.8%) prioritized religious concerns. CONCLUSIONS:Although 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.

journal_name

Neurology

journal_title

Neurology

authors

Hwang DY,Knies AK,Mampre D,Kolenikov S,Schalk M,Hammer H,White DB,Holloway RG,Sheth KN,Fraenkel L

doi

10.1212/WNL.0000000000009406

subject

Has Abstract

pub_date

2020-05-12 00:00:00

pages

e2054-e2068

issue

19

eissn

0028-3878

issn

1526-632X

pii

WNL.0000000000009406

journal_volume

94

pub_type

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