title: Healthcare Proxy Awareness of Suspected Infections in Nursing Home Residents with Advanced Dementia.
abstract: OBJECTIVE
  To determine healthcare proxy involvement in decision-making regarding infections in individuals with advanced dementia.
  
  
  METHODS
  Prospective cohort study.
  
  
  METHODS
  Thirty-five Boston-area nursing homes (NHs).
  
  
  METHODS
  NH residents with advanced dementia and their proxies (N = 362).
  
  
  METHODS
  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).
  
  
  CONCLUSIONS
  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.
authors.affiliation: Hebrew SeniorLife Institute for Aging Research, Boston, Massachusetts.|Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts.
authors.forename: Jane L
authors.initials: JL
authors.lastname: Givens
authors.affiliation: School of Medicine, University of Rochester, Rochester, New York.
authors.forename: Sara
authors.initials: S
authors.lastname: Spinella
authors.affiliation: Department of Family Medicine, University of Washington, Seattle, Washington.
authors.forename: Claire K
authors.initials: CK
authors.lastname: Ankuda
authors.affiliation: Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts.
authors.forename: Erika
authors.initials: E
authors.lastname: D'Agata
authors.affiliation: Department of Pediatrics, Seattle Children's Research Institute, University of Washington and Children's Core for Biomedical Statistics, Seattle, Washington.
authors.forename: Michele L
authors.initials: ML
authors.lastname: Shaffer
authors.affiliation: Hebrew SeniorLife Institute for Aging Research, Boston, Massachusetts.
authors.forename: Daniel
authors.initials: D
authors.lastname: Habtemariam
authors.affiliation: Hebrew SeniorLife Institute for Aging Research, Boston, Massachusetts.|Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts.
authors.forename: Susan L
authors.initials: SL
authors.lastname: Mitchell
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D000890:Anti-Infective Agents / Q000627:therapeutic use; D001424:Bacterial Infections / Q000188:drug therapy* / Q000453:epidemiology*; D015331:Cohort Studies; D015897:Comorbidity; D016001:Confidence Intervals; D003657:Decision Making; D003704:Dementia / Q000188:drug therapy* / Q000453:epidemiology*; D005260:Female; D006801:Humans; D008297:Male; D009735:Nursing Homes; D016017:Odds Ratio; D011446:Prospective Studies; D019727:Proxy
chemical_list: D000890:Anti-Infective Agents
keywords: dementia; nursing home; surrogate decision-making