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

Abstract

IMPORTANCE Shared decision-making requires key stakeholders to align in perceptions of prognosis and likely treatment outcomes. OBJECTIVE 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. DESIGN, SETTING, AND PARTICIPANTSThis 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.EXPOSURES 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. MAIN OUTCOMES AND MEASURESPrognosis 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. RESULTS 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).

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“…As clinician’s lead conversations about best medical options and prognosis, the family is invited to share the patient’s narrative and preferences. Since the disagreement between clinicians and families is widened by mutual misunderstanding of prognostic assessment [ 44 ], validated scores could be helpful in reducing this gap and facilitating these conversations. More specifically, training programs focused on prognostic assessment and predictive scores could facilitate their application in clinical practice.…”

Ethics of the algorithmic prediction of goal of care preferences: from theory to practice

“…Clinicians must balance a range of ethically challenging and complex demands, including providing treatment consistent with the patient’s presumed preferences and values; supporting the patient’s family and loved ones; ensuring timely decision-making and overseeing clinical care 1. However, as the literature has shown, there is often a considerable gap between the care that is received and the care patients would have wanted 2 3. Moreover, available instruments to record goal of care preferences, such as advance directives, still do not provide the guidance clinicians often need to identify patient preferences 4 5.…”

“…1 However, as the literature has shown, there is often a considerable gap between the care that is received and the care patients would have wanted. 2 3 Moreover, available instruments to record goal of care preferences, such as advance directives, still do not provide the guidance clinicians often need to identify patient preferences. 4 5 Moreover, those close to the patient tend to be part of the decision-making process, but research has shown that surrogates and next-of-kin are often limited in their ability to accurately predict their loved ones’ preferred care 6 7 and often suffer emotional distress in the face of such decision-making.…”

Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences

“…13 Data from the adult neurocritical care setting suggests that prognostic discordance between physicians and surrogates is common in the context of differences in understanding and optimistic beliefs. 14 Existing data in the adult traumatic brain injury setting further suggest that adult surrogates and clinicians have different prognostic communication preferences from each other. Whereas adult surrogates value the provision of numeric prognostic estimates and the reduction of prognostic uncertainty, clinicians often prefer to omit numeric estimates in the context of perceptions of surrogate numeracy and insufficient data to support prognostication.…”

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