title: Healthcare proxies of nursing home residents with advanced dementia: decisions they confront and their satisfaction with decision-making.
abstract: OBJECTIVE
  To describe the medical decisions confronting healthcare proxies (HCPs) of nursing home (NH) residents with advanced dementia and to identify factors associated with greater decision-making satisfaction.
  
  
  METHODS
  Prospective cohort study.
  
  
  METHODS
  Twenty-two Boston-area NHs.
  
  
  METHODS
  Three hundred twenty-three NH residents with advanced dementia and their HCPs.
  
  
  METHODS
  Decisions made by HCPs over 18 months were ascertained quarterly. After making a decision, HCPs completed the Decision Satisfaction Inventory (DSI) (range 0-100). Independent variables included HCP and resident sociodemographic characteristics, health status, and advance care planning. Multivariable linear regression identified factors associated with higher DSI scores (greater satisfaction).
  
  
  RESULTS
  Of 323 HCPs, 123 (38.1%) recalled making at least one medical decision; 232 decisions were made, concerning feeding problems (27.2%), infections (20.7%), pain (12.9%), dyspnea (8.2%), behavior problems (6.9%), hospitalizations (3.9%), cancer (3.0%), and other complications (17.2%). Mean DSI score +/- standard deviation was 78.4 +/- 19.5, indicating high overall satisfaction. NH provider involvement in shared decision-making was the area of least satisfaction. In adjusted analysis, greater decision-making satisfaction was associated with the resident living on a special care dementia unit (P=.002), greater resident comfort (P=.004), and the HCP not being the resident's child (P=.02).
  
  
  CONCLUSIONS
  HCPs of NH patients with advanced dementia can most commonly expect to encounter medical decisions relating to feeding problems, infections, and pain. Inadequate support from NH providers is the greatest source of HCP dissatisfaction with decision-making. Greater resident comfort and care in a special care dementia unit are potentially modifiable factors associated with greater decision-making satisfaction.
authors.affiliation: Division of Gerontology, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA. JaneGivens@hrca.harvard.edu
authors.forename: Jane L
authors.initials: JL
authors.lastname: Givens
authors.forename: Dan K
authors.initials: DK
authors.lastname: Kiely
authors.forename: Kristen
authors.initials: K
authors.lastname: Carey
authors.forename: Susan L
authors.initials: SL
authors.lastname: Mitchell
mesh_terms: D001900:Boston; D003657:Decision Making; D003704:Dementia; D005260:Female; D006801:Humans; D016014:Linear Models; D008297:Male; D008875:Middle Aged; D009735:Nursing Homes; D010549:Personal Satisfaction; D011446:Prospective Studies; D019727:Proxy / Q000523:psychology*