Healthcare proxy awareness of suspected infections in nursing home residents with advanced dementia

Objectives To determine healthcare proxy involvement in decision-making regarding infections in individuals with advanced dementia. Design Prospective cohort study. Setting Thirty-five Boston-area nursing homes (NHs). Participants NH residents with advanced dementia and their proxies (N = 362). Measurements Charts were abstracted monthly (up to 12 months) for documentation of suspected infections and provider-proxy discussions for each episode. Proxies were interviewed within 8 weeks of the infection to determine their awareness and decision-making involvement. Factors associated with proxy awareness and discussion documentation were identified. Results There were 496 suspected infections; proxies were reached for interview for 395 (80%). Proxy-provider discussions were documented for 207 (52%) episodes, yet proxies were aware of only 156 (39%). Proxies participated in decision-making for 89 (57%) episodes of which they were aware. Proxy awareness was associated with antimicrobial use (adjusted odds ratio (AOR) = 3.43, 95% confidence interval (CI) = 1.94-6.05), hospital transfer (AOR = 3.00, 95% CI = 1.19-7.53), infection within 30 days of death (AOR = 3.32, 95% CI = 1.54-7.18), and fewer days between infection and study interview (AOR = 2.71, 95% CI = 1.63-4.51). Discussion documentation was associated with the resident residing in a dementia special care unit (AOR = 1.71, 95% CI = 1.04-2.80), the resident not on hospice (AOR = 3.25, 95% CI = 1.31-8.02), more provider visits (AOR = 1.71, 95% CI = 1.07-2.75), proxy visits of more than 7 h/wk (AOR = 1.93, 95% CI = 1.02-3.67), and episode within 30 days of death (AOR = 3.99, 95% CI = 1.98-8.02). Conclusion Proxies are unaware of and do not participate in decision-making for most suspected infections that NH residents with advanced dementia experience. Proxy awareness of episodes and documentation of provider-proxy discussions are not congruent.