David Y Hwang1, Andrea K Knies2, David Mampre2, Stanislav Kolenikov2, Marci Schalk2, Heather Hammer2, Douglas B White2, Robert G Holloway2, Kevin N Sheth2, Liana Fraenkel2. 1. From the Yale School of Medicine (DYH, AKK, KNS), Division of Neurocritical Care and Emergency Neurology, Department of Neurology, New Haven, CT; Johns Hopkins School of Medicine (DM), Baltimore, MD; Abt Associates (SK), Columbia, MO; Abt Associates (MS), Chicago, IL; Booz Allen Hamilton (HH), Social Science Group, Washington, DC; Department of Critical Care Medicine (DBW), University of Pittsburgh School of Medicine, Pittsburgh, PA; Department of Neurology (RGH), University of Rochester Medical Center, Rochester, NY; and Yale School of Medicine (LF), Department of Internal Medicine, New Haven, CT. david.hwang@yale.edu. 2. From the Yale School of Medicine (DYH, AKK, KNS), Division of Neurocritical Care and Emergency Neurology, Department of Neurology, New Haven, CT; Johns Hopkins School of Medicine (DM), Baltimore, MD; Abt Associates (SK), Columbia, MO; Abt Associates (MS), Chicago, IL; Booz Allen Hamilton (HH), Social Science Group, Washington, DC; Department of Critical Care Medicine (DBW), University of Pittsburgh School of Medicine, Pittsburgh, PA; Department of Neurology (RGH), University of Rochester Medical Center, Rochester, NY; and Yale School of Medicine (LF), Department of Internal Medicine, New Haven, CT.
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.
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.
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