An Advance Care Planning Video Decision Support Tool for Nursing Home Residents With Advanced Dementia: A Cluster Randomized Clinical Trial

Abstract

Importance: Better advance care planning (ACP) can help promote goal-directed care in patients with advanced dementia.

Objectives: To test whether an ACP video (vs usual care) has an effect on documented advance directives, level of care preferences, goals-of-care discussions, and burdensome treatments among nursing home residents with advanced dementia.

Design, setting, and participants: The Educational Video to Improve Nursing home Care in End-stage dementia (EVINCE) trial was a cluster randomized clinical trial conducted between February 2013 and July 2017, at 64 Boston-area nursing homes (32 facilities per arm). A total of 402 residents with advanced dementia and their proxies (intervention arm, n = 212; control arm, n = 190) were assessed quarterly for 12 months.

Interventions: A 12-minute ACP video for proxies with written communication of their preferred level of care (comfort, basic, or intensive) to the primary care team.

Main outcomes and measures: The primary outcome was the proportion of residents with do-not-hospitalize (DNH) directives by 6 months. Secondary outcomes included preference for comfort care, documented directives to withhold tube-feeding and intravenous hydration, documented goals-of-care discussions, and burdensome treatments (hospital transfers, tube-feeding, or parenteral therapy) per 1000 resident-days. Exploratory analyses examined associations between trial arm and documented advance directives when comfort care was preferred.

Results: The mean age of the 402 study residents was 86.7 years [range, 67-102 years]; 350 were white (87.1%) and 323 were female (80.3%), with DNH directives that by 6 months did not differ between arms (63% in both arms; adjusted odds ratio [AOR], 1.08; 95% CI, 0.69-1.69). Preferences for comfort care, directives to withhold intravenous hydration, and burdensome treatments did not differ between arms. Residents in intervention vs control facilities were more likely to have directives for no tube-feeding at 6 months (70.10% vs 61.90%; AOR, 1.79; 95% CI, 1.13-2.82) and all other time periods, and documented goals-of-care discussions at 3 months (16.10% vs 7.90%; AOR, 2.58; 95% CI, 1.20-5.54). When comfort care was preferred, residents in the intervention arm were more likely to have both DNH and no tube-feeding directives (72.20% vs 52.80%; AOR, 2.68; 95% CI, 2.68-5.85).

Conclusions and relevance: An ACP video did not have an effect on preferences, DNH status, or burdensome treatments among residents with advanced dementia, but did increase directives to withhold tube-feeding. When proxies preferred comfort care, advance directives of residents in the intervention arm were more likely to align with that preference.

Trial registration: clinicaltrials.gov Identifier: NCT01774799.

Figures

Figure 1

Consort diagram of nursing homes and participants. a Unable to contact proxy (n=163), resident did not have dementia (n=56), resident died before consent obtained (n=47), proxy could not meet (n=24), resident GDS score <7 (n=17), proxy did not speak English (n=9), resident in coma (n=4), no proxy (n=1); b Unable to contact proxy (n=158), resident died before consent obtained (n=53), resident did not have dementia (n=49), proxy could not meet (n=20), resident in coma (n=13), resident GDS score <7 (n=8), proxy did not speak English (n=5), no proxy (n=1); c All participants at nursing home completed follow-up either before the facility closed or at another study facility and were included in the primary outcome analysis; d Discharged from nursing home after baseline assessment (n=1), 3 month assessment (n=1); e Discharged from nursing home after: baseline assessment (n-1), 9 month assessment (n=2); f Proxy unstable and could not continue to provide consent for resident; g Unable to contact after: baseline assessment (n=4), 3 month assessment (n=2), 6 month assessment (n=3); h Unable to contact after: baseline assessment (n=3), 3 month assessment (n=2); i Excluded 1 resident with only baseline data, included all residents with ≥1 follow-up assessment.