An Advance Care Planning Video Decision Support Tool for Nursing Home Residents With Advanced Dementia

Abstract

Importance Better advance care planning (ACP) can help promote goal-directed care in advanced dementia. Objectives To test whether an ACP video (versus usual care) impacted documented advance directives, level of care preferences, goals-of-care discussions, and burdensome treatments among nursing home residents with advanced dementia. Design Educational Video to Improve Nursing home Care in End-stage dementia was a cluster randomized clinical trial conducted between February, 2013 and July, 2017. Setting 64 Boston-area nursing homes (32 facilities/arm) Participants 402 residents with advanced dementia and their proxies (intervention, N=212; control N=190) assessed quarterly for 12 months. Interventions 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)/1000 resident-days. Exploratory analyses examined associations between trial arm and documented advance directives when comfort care was preferred. Results The proportion of residents (mean age, 86.7; White, 87.1%; and female, 81.5%) with DNH directives by 6 months did not differ between arms (63% in both arms; adjusted odds ratio (AOR)=1.08, 95% confidence interval (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 versus control facilities were more likely to have directives for no tube-feeding at 6 months (70.1% versus 61.9%, AOR=1.79, 95% CI=1.13-2.82) and all other time periods, and documented goals-of-care discussions at 3 months (16.1% versus 7.9%, AOR=2.58, 95% CI=1.20-5.54). When comfort was preferred, residents in the intervention arm were more likely to have both DNH and no tube-feeding directives (72.2% versus 52.8%, AOR=2.68, 95% CI=2.68-5.85). Conclusions and Relevance An ACP video did not impact preferences, DNH status, or burdensome treatments among residents with advanced dementia, but increased 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.

Fact Box decision support tools reduce decisional conflict about antibiotics for pneumonia and artificial hydration in advanced dementia: a randomized controlled trail

“…Furthermore, the reduction on decisional conflict we observed with our brief tool was similar to that of a more intense 20-minute decision support tool [15]. Compared to video-based supports [14,[16][17][18], Fact Boxes are brief, handy, inexpensive and easier to incorporate into real-life care settings.…”

“…Most users rated the Fact Boxes positively on helpfulness, content, layout and length, and 97% of physicians stated that they would use them as a communication tool. This RCT builds upon limited prior research examining the effects of decision support tools in advanced dementia [12][13][14][15][16][17][18]. The findings corroborate the beneficial impact of these instruments on reducing decisional conflict [12,13,15].…”

“…Our findings that Fact Boxes aided professional guardians is particularly notable because it was relatively unknown what type of decision support they would benefit from when making end-of-life choices for patients [30]. The finding that one Fact Box impacted preferences to forego antibiotics is also noteworthy, as it suggests comfort-focused care can be promoted by a less time intensive decision support tool than previously identified [14][15][16][17][18].…”

“…Decision support tools improve medical decision-making by improving knowledge and reducing decisional conflict [12][13][14][15]. The few decision support tools designed specifically for proxies of patients with advanced dementia promote preferences for more comfort-focused care [14][15][16][17][18]. A prior randomized controlled trial (RCT) showed that a 20-min, paper-print decision support tool about feeding options in advanced dementia reduced surrogates' decisional conflict, improved their knowledge, fostered communication with providers and resulted in residents receiving increased eating assistance [15].…”

“…A prior randomized controlled trial (RCT) showed that a 20-min, paper-print decision support tool about feeding options in advanced dementia reduced surrogates' decisional conflict, improved their knowledge, fostered communication with providers and resulted in residents receiving increased eating assistance [15]. While most of these tools have been found to be effective, they are tailored to only a single group of decision makers [12][13][14][15][16][17][18]. In contrast, Fact Boxes are short, inexpensive, paper-based decision support tools that are tailored for a variety of decision-makers.…”