Jane L Givens1,2, Sara Spinella3, Claire K Ankuda4, Erika D'Agata2, Michele L Shaffer5, Daniel Habtemariam1, Susan L Mitchell1,2. 1. Hebrew SeniorLife Institute for Aging Research, Boston, Massachusetts. 2. Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts. 3. School of Medicine, University of Rochester, Rochester, New York. 4. Department of Family Medicine, University of Washington, Seattle, Washington. 5. Department of Pediatrics, Seattle Children's Research Institute, University of Washington and Children's Core for Biomedical Statistics, Seattle, Washington.
Abstract
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.
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.
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