Background
Infections are common in advanced dementia. Little is known about healthcare proxy involvement in decision making regarding infections.
Design
Prospective cohort study
Setting/Participants
362 nursing home (NH) residents with advanced dementia and their proxies in 35 Boston-area facilities.
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 207/395 episodes (52%), yet proxies were aware of only 156/395 (39%). Proxies participated in decision-making for 89/156 (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 occurrence 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), 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 > 7 hours/week (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 experienced by NH residents with advanced dementia. Proxy awareness of episodes and documentation of provider/proxy discussions are not congruent.