Assessment of Discordance Between Physicians and Family Members Regarding Prognosis in Patients With Severe Acute Brain Injury

Whitney A Kiker,J Randall Curtis,Claire J Creutzfeldt,Leah I B Andrews,Rachel Rutz Voumard,Robert G Holloway,Ruth A Engelberg,Lyndia C Brumback

doi:10.1001/jamanetworkopen.2021.28991

Abstract

Shared decision-making requires key stakeholders to align in perceptions of prognosis and likely treatment outcomes. For patients with severe acute brain injury, the objective of this study was to better understand prognosis discordance between physicians and families by determining prevalence and associated factors. This mixed-methods cross-sectional study analyzed a cohort collected from January 4, 2018, to July 22, 2020. This study was conducted in the medical and cardiac intensive care units of a single neuroscience center. Participants included families, physicians, and nurses of patients admitted with severe acute brain injury. Severe acute brain injury was defined as stroke, traumatic brain injury, or hypoxic ischemic encephalopathy with a Glasgow Coma Scale score less than or equal to 12 points after hospital day 2. Prognosis discordance was defined as a 20% or greater difference between family and physician prognosis predictions; misunderstanding was defined as a 20% or greater difference between physician prediction and the family's estimate of physician prediction; and optimistic belief difference was defined as any difference (>0%) between family prediction and their estimate of physician prediction. Logistic regression was used to identify associations with discordance. Optimistic belief differences were analyzed as a subgroup of prognosis discordance. Among 222 enrolled patients, prognostic predictions were available for 193 patients (mean [SD] age, 57 [19] years; 106 men [55%]). Prognosis discordance occurred for 118 patients (61%) and was significantly more common among families who identified with minoritized racial groups compared with White families (odds ratio [OR], 3.14; CI, 1.40-7.07, P = .006); among siblings (OR, 4.93; 95% CI, 1.35-17.93, P = .02) and adult children (OR, 2.43; 95% CI, 1.10-5.37; P = .03) compared with spouses; and when nurses perceived family understanding as poor compared with good (OR, 3.73; 95% CI, 1.88-7.40; P < .001). Misunderstanding was present for 80 of 173 patients (46%) evaluated for this type of prognosis discordance, and optimistic belief difference was present for 94 of 173 patients (54%). In qualitative analysis, faith and uncertainty emerged as themes underlying belief differences. Nurse perception of poor family understanding was significantly associated with misunderstanding (OR, 2.06; 95% CI, 1.07-3.94; P = .03), and physician perception with optimistic belief differences (OR, 2.32; 95% CI, 1.10-4.88; P = .03). Results of this cross-sectional study suggest that for patients with severe acute brain injury, prognosis discordance between physicians and families was common. Efforts to improve communication and decision-making should aim to reduce this discordance and find ways to target both misunderstanding and optimistic belief differences.

Highlights

Effective shared decision-making ideally requires clinicians, patients, and families to have a mutual understanding of patient and family values, and of the patient’s most likely prognosis and outcomes of treatment options.[1,2,3] Substantial differences between prognostic perceptions of these stakeholders may compromise the patient’s or family’s ability to make an informed decision that is value-concordant to the individual patient.[4]
Prognosis discordance occurred for 118 patients (61%) and was significantly more common among families who identified with minoritized racial groups compared with White families; among siblings (OR, 4.93; 95% CI, 1.35-17.93, P = .02) and adult children (OR, 2.43; 95% CI, 1.10-5.37; P = .03) compared with spouses; and when nurses perceived family understanding as poor compared with good (OR, 3.73; 95% CI, 1.88-7.40; P < .001)
Prognostic uncertainty is high after severe acute brain injury (SABI), a group of devastating neurologic conditions including stroke, traumatic brain injury, and hypoxic ischemic encephalopathy after cardiac arrest.[11,12,13]

Summary

Introduction

Effective shared decision-making ideally requires clinicians, patients, and families to have a mutual understanding of patient and family values, and of the patient’s most likely prognosis and outcomes of treatment options.[1,2,3] Substantial differences between prognostic perceptions of these stakeholders may compromise the patient’s or family’s ability to make an informed decision that is value-concordant to the individual patient.[4]. Prognostic uncertainty is high after severe acute brain injury (SABI), a group of devastating neurologic conditions including stroke, traumatic brain injury, and hypoxic ischemic encephalopathy after cardiac arrest.[11,12,13] Patients with SABI often require life-or-death treatment decisions early on during their hospital stay but are unable to participate in the decision-making process themselves. Members are tasked with participating in highly consequential treatment decisions by integrating medical and prognostic information with their loved one’s presumed goals of care.[14]

Methods

Results

Discussion

Conclusion