Healthcare Proxies of Nursing Home Residents with Advanced Dementia: Decisions They Confront and Their Satisfaction with Decision‐Making

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Abstract
OBJECTIVES: 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. DESIGN: Prospective cohort study. SETTING: Twenty‐two Boston‐area NHs. PARTICIPANTS: Three hundred twenty‐three NH residents with advanced dementia and their HCPs. MEASUREMENTS: 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). CONCLUSION: 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.