Surrogate and physician understanding of patients' preferences for living permanently in a nursing home

OBJECTIVE: To evaluate patients' willingness to live permanently in a nursing home and surrogate and physician understanding of that preference. DESIGN: Evaluation of cross-sectional interview data from a cohort study. SETTING: Five academic medical centers. PARTICIPANTS: Seriously ill hospitalized adults enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). MEASUREMENTS: Patients' willingness to live permanently in a nursing home was measured on a 5-point scale ranging from 'very willing' to 'rather die'. Ordinal logistic regression was used to identify patient demographic and clinical characteristics associated with this preference. Surrogate and physician perceptions of patient preferences were compared with patients' responses, and factors associated independently with surrogate and physician understanding of patient preference were identified. RESULTS: Of 9105 patients, 3262 (36%) provided responses to the study question: 7% were 'very willing' to live permanently in a nursing home, 19% 'somewhat willing' 11% 'somewhat unwilling', 26% 'very unwilling', and 30% would 'rather die'. Older age was associated independently with less willingness to live permanently in a nursing home (odds ratio [OR]= .90 per decade; 95% confidence interval [CI]: 0.85, 0.96). Patients with more education (OR = 1.03 per year; 95% CI:1.00,1.05) and more disabilities (OR = 1.05 per disability; 95% CI:1.01,1.09), and black patients (OR = 1.46 compared with white patients; 95% CI:1.20,1.76) were more willing to live in a nursing home. Surrogates understood 61% of patients' nursing home preferences but identified only 35% of patients who were willing to live permanently in a nursing home. Physicians identified 18% of patients willing to live permanently in a nursing home. CONCLUSION: Patient attitudes about living permanently in a nursing home can be elicited, cannot be reliably predicted from demographic and clinical variables, and are frequently misunderstood by surrogates and physicians. Elicitation of patient preferences regarding permanent nursing home placement should be explored before patients become unable to participate in decision making in order to enhance the concordance of patient preference with the way they spend the end of their lives.