Concordance Between Proxy Level of Care Preference and Advance Directives Among Nursing Home Residents With Advanced Dementia: A Cluster Randomized Clinical Trial

Abstract

Context: Care consistent with goals is the desired outcome of advance care planning (ACP).

Objectives: The objectives of this study were to examine concordance between advance directives and proxy care preferences among nursing home residents with advanced dementia and to determine the impact of an ACP video on concordance.

Methods: Data were from Educational Video to Improve Nursing home Care in End-stage dementia, a cluster randomized clinical trial conducted in 64 Boston-area facilities (32/arm) from 2013 to 2017. Participants included advanced dementia residents and their proxies (N = 328 dyads). At the baseline and quarterly (up to 12 months), proxies stated their preferred level of care for the resident (comfort, basic, or intensive) and advance directives for specific treatments (resuscitation, hospitalization, tube-feeding, intravenous hydration, antibiotics) were abstracted from the charts. At the baseline, proxies in intervention facilities viewed an ACP video. Their care preferences after viewing it were shared via a written communication with the primary care team. At each assessment, concordance between directives and proxy preferences was determined.

Results: Among the residents (mean age, 86.6 years; 19.5% male), the most prevalent directive was DNR (89.3%) and foregoing antibiotics was least common (parenteral, 8.2%; any type, 4.0%). Concordance between directives and each level of care preference was as follows: comfort, 7%; basic, 49%; and intensive, 58%. When comfort care was preferred, concordance was higher in intervention versus control facilities (10.8% vs. 2.5%; adjusted odds ratio, 2.48; 95% CI, 1.01-6.09).

Conclusion: Better alignment between preferences for comfort-focused care and advance directives is needed in advanced dementia. An ACP video may help achieve that goal.

Keywords: Dementia; advance care planning; advance directives; cluster randomized clinical trial; nursing home; preferences.

Figure 1

Comparison of concordance between trial arms by proxy level of care preference. Any preference, AOR=1.37, 95% CI=0.82–2.27, P=0.230; comfort care preference, AOR=2.52, 95% CI=1.03–6.17, P=0.042; basic medical care preference, AOR=0.86, 95% CI=0.42–1.74, P=0.671; intensive medical care preference, AOR=1.83, 95% CI=0.43–7.79, P=0.414.