"What Is the Most Important to Them?" Swiss Health Care Proxies, Nurses, and Physicians Discuss Planning Practices for Aged Care Residents Who No Longer Have Medical Decision-Making Capacity.

INTRODUCTION: Multiple morbidities, including neurodegenerative diseases such as dementia, which result in diminished decision-making capacity (DMC), make care and care planning complicated for residential aged care facility (RACF) residents. While advance care planning has been highlighted as essential for ensuring that this population receives care that is coherent with their wishes, there are few models specifically designed for this population. This study aimed to explore the current practices for care planning and decision-making for Swiss RACF residents who no longer have medical DMC. METHODS: Semi-structured focus groups were conducted with 23 nurses in three RACFs and with 13 physicians working in 9 RACFs. Semi-structured interviews were conducted with 18 health care proxies of 16 residents without DMC. Thematic analysis was conducted to identify the most salient themes across the dataset. RESULTS: Analyses identified many collaborative processes between nurses, physicians, and health care proxies including family meetings, reconstructing residents' presumed will, making anticipatory decisions, and documenting these decisions. These processes were, however, highly variable and differed between institutions and between residents within each facility, with a lack of standardization. This variability was highlighted to be problematic for information transmission within facilities and in case of hospital or facility transfer. CONCLUSIONS: These results highlight the importance of standardized yet flexible processes of care planning for people who no longer have DMC and provide insights for the development of such models specifically designed to address this problem.

Prognosis Predictions by Families, Physicians, and Nurses of Patients with Severe Acute Brain Injury: Agreement and Accuracy.

BACKGROUND: Effective shared decision-making relies on some degree of alignment between families and the medical team regarding a patient's likelihood of recovery. Patients with severe acute brain injury (SABI) are often unable to participate in decisions, and therefore family members make decisions on their behalf. The goal of this study was to evaluate agreement between prognostic predictions by families, physicians, and nurses of patients with SABI regarding their likelihood of regaining independence and to measure each group's prediction accuracy. METHODS: This observational cohort study, conducted from 01/2018 to 07/2020, was based in the neuroscience and medical/cardiac intensive care units of a single center. Patient eligibility included a diagnosis of SABI-specifically stroke, traumatic brain injury, or hypoxic ischemic encephalopathy-and a Glasgow Coma Scale ≤ 12 after hospital day 2. At enrollment, families, physicians, and nurses were asked separately to predict a patient's likelihood of recovering to independence within 6 months on a 0-100 scale, regardless of whether a formal family meeting had occurred. True outcome was based on modified Rankin Scale assessment through a family report or medical chart review. Prognostic agreement was measured by (1) intraclass correlation coefficient; (2) mean group prediction comparisons using paired Student's t-tests; and (3) prevalence of concordance, defined as an absolute difference of less than 20 percentage points between predictions. Accuracy for each group was measured by calculating the area under a receiver operating characteristic curve (C statistic) and compared by using DeLong's test. RESULTS: Data were collected from 222 patients and families, 45 physicians, and 103 nurses. Complete data on agreement and accuracy were available for 187 and 177 patients, respectively. The intraclass correlation coefficient, in which 1 indicates perfect correlation and 0 indicates no correlation, was 0.49 for physician-family pairs, 0.40 for family-nurse pairs, and 0.66 for physician-nurse pairs. The difference in mean predictions between families and physicians was 23.5 percentage points (p < 0.001), 25.4 between families and nurses (p < 0.001), and 1.9 between physicians and nurses (p = 0.38). Prevalence of concordance was 39.6% for family-physician pairs, 30.0% for family-nurse pairs, and 56.2% for physician-nurse pairs. The C statistic for prediction accuracy was 0.65 for families, 0.82 for physicians, and 0.76 for nurses. The p values for differences in C statistics were < 0.05 for family-physician and family-nurse groups and 0.18 for physician-nurse groups. CONCLUSIONS: For patients with SABI, agreement in predictions between families, physicians, and nurses regarding likelihood of recovery is poor. Accuracy appears higher for physicians and nurses compared with families, with no significant difference between physicians and nurses.

Adapting to a New Normal After Severe Acute Brain Injury: An Observational Cohort Using a Sequential Explanatory Design.

OBJECTIVES: Treatment decisions following severe acute brain injury need to consider patients' goals-of-care and long-term outcomes. Using family members as respondents, we aimed to assess patients' goals-of-care in the ICU and explore the impact of adaptation on survivors who did not reach the level of recovery initially considered acceptable. DESIGN: Prospective, observational, mixed-methods cohort study. SETTING: Comprehensive stroke and level 1 trauma center in Pacific Northwest United States. PARTICIPANTS: Family members of patients with severe acute brain injury in an ICU for greater than 2 days and Glasgow Coma Scale score less than 12. MEASUREMENTS AND MAIN RESULTS: At enrollment, we asked what level of physical and cognitive recovery the patient would find acceptable. At 6 months, we assessed level of recovery through family surveys and chart review. Families of patients whose outcome was below that considered acceptable were invited for semistructured interviews, examined with content analysis. RESULTS: For 184 patients, most family members set patients' minimally acceptable cognitive recovery at "able to think and communicate" or better (82%) and physical recovery at independence or better (66%). Among 170 patients with known 6-month outcome, 40% had died in hospital. Of 102 survivors, 33% were able to think and communicate, 13% were independent, and 10% died after discharge. Among survivors whose family member had set minimally acceptable cognitive function at "able to think and communicate," 64% survived below that level; for those with minimally acceptable physical function at independence, 80% survived below that. Qualitative analysis revealed two key themes: families struggled to adapt to a new, yet uncertain, normal and asked for support and guidance with ongoing treatment decisions. CONCLUSIONS AND RELEVANCE: Six months after severe acute brain injury, most patients survived to a state their families initially thought would not be acceptable. Survivors and their families need more support and guidance as they adapt to a new normal and struggle with persistent uncertainty.

'We Have Guidelines, but We Can Also Be Artists': Neurologists Discuss Prognostic Uncertainty, Cognitive Biases, and Scoring Tools.

INTRODUCTION: Ischemic stroke is a leading cause of disability and mortality worldwide. As acute stroke patients often lose decision-making capacity, acute management is fraught with complicated decisions regarding life-sustaining treatment (LST). We aimed to explore (1) the perspectives and experiences of clinicians regarding the use of predictive scores for LST decision making in severe acute stroke, and (2) clinicians' awareness of their own cognitive biases in this context. METHODS: Four focus groups (FGs) were conducted with 21 physicians (13 residents and 8 attending physicians); two FGs in a university hospital and two in a regional hospital in French-speaking Switzerland. Discussions were audio-recorded and transcribed verbatim. Transcripts were analyzed thematically. Two of the four transcripts were double coded to establish coding framework consistency. RESULTS: Participants reported that predictive tools were not routinely used after severe stroke, although most knew about such scores. Scores were reported as being useful in quantifying prognosis, advancing scientific evidence, and minimizing potential biases in decisions. Their use is, however, limited by the following barriers: perception of inaccuracy, general disbelief in scoring, fear of self-fulfilling prophecy, and preference for clinical judgement. Emotional and cognitive biases were common. Emotional biases distort clinicians' knowledge and are notably: bias of personal values, negative experience, and cultural bias. Cognitive biases, such as availability, confirmation, and anchoring biases, that produce systematic deviations from rational thinking, were also identified. CONCLUSIONS: The results highlight opportunities to improve decision making in severe stroke through the promotion of predictive tools, strategies for communicating prognostic uncertainty, and minimizing cognitive biases among clinicians, in order to promote goal-concordant care.

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

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 Participants: 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. 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 Measures: 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. 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). Conclusions and Relevance: 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.

Goal-Concordant Care After Severe Acute Brain Injury.

Background: Patients with severe acute brain injury (SABI) lack decision-making capacity, calling on families and clinicians to make goal-concordant decisions, aligning treatment with patient's presumed goals-of-care. Using the family perspective, this study aimed to (1) compare patient's goals-of-care with the care they were receiving in the acute setting, (2) identify patient and family characteristics associated with goal-concordant care, and (3) assess goals-of-care 6 months after SABI. Methods: Our cohort included patients with SABI in our Neuro-ICU and a Glasgow Coma Scale Score <12 after day 2. Socio-demographic and clinical characteristics were collected through surveys and chart review. At enrollment and again at 6 months, each family was asked if the patient would prefer medical care focused on extending life vs. care focused on comfort and quality of life, and what care the patient is currently receiving. We used multivariate regression to examine the characteristics associated with (a) prioritized goals (comfort/extending life/unsure) and (b) goal concordance. Results: Among 214 patients, families reported patients' goals-of-care to be extending life in 118 cases (55%), comfort in 71 (33%), and unsure for 25 (12%), while care received focused on extending life in 165 cases (77%), on comfort in 23 (11%) and families were unsure in 16 (7%). In a nominal regression model, prioritizing comfort over extending life was significantly associated with being non-Hispanic White and having worse clinical severity. Most patients who prioritized extending life were receiving family-reported goal-concordant care (88%, 104/118), while most of those who prioritized comfort were receiving goal-discordant care (73%, 52/71). The only independent association for goal concordance was having a presumed goal of extending life at enrollment (OR 23.62, 95% CI 10.19-54.77). Among survivors at 6 months, 1 in 4 family members were unsure about the patient's goals-of-care. Conclusion: A substantial proportion of patients are receiving unwanted aggressive care in the acute setting after SABI. In the first days, such aggressive care might be justified by prognostic uncertainty. The high rate of families unsure of patient's goals-of-care at 6 months suggests an important need for periodic re-evaluation of prognosis and goals-of-care in the post-acute setting.