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: To examine concordance between advance directives and proxy care preferences among nursing home residents with advanced dementia, and determine the impact of an ACP video on concordance. Methods: Data were from Educational Video to Improve Nursing home Care in End-stage dementia (EVINCE); a cluster randomized clinical trial conducted in 64 Boston-area facilities (32/arm) from 2013–2017. Participants included advanced dementia residents and their proxies (N=328 dyads). At 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 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: comfort, 7%; basic 49%; and intensive, 58%. When comfort care was preferred, concordance was higher in intervention versus control facilities (10.8% versus 2.5%; adjusted odds ratio, 2.48, 95% confidence interval, 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.

Triggered Palliative Care for Late-Stage Dementia: A Pilot Randomized Trial

“…In the nursing home setting, we have shown that dementia-specific decision aids can improve communication and decision-making for family caregivers, enhance palliative care treatment plans, improve goal-concordant care, and reduce hospitalizations. 46,47,48,49,50 Ongoing clinical trials include primary palliative care interventions to improve decision-making about treatment for infection in advanced dementia (TRAIN-AD AG032982) in nursing homes and dementia palliative care delivered community-dwelling patients and their families (IN PEACE AG057733). Given the large population of persons with Alzheimer’s and related dementias, and the prolonged suffering associated with this condition, improvements in both specialty and primary palliative care are necessary to improve outcomes.…”

Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review

“…Documentation of values and preferences AD completion, 116,122,123,127,159 documents or discussions, 17,80,120,125,127,130 Goal concordant care Via medical record review alone 62,89,96,99,128,161 or also surrogate report 91,131,132 80,121,162 spiritual well-being, 90 surrogate well-being, 123,132 symptom management, 80 peacefulness 89 10 0 (0)…”

Characteristics of Advance Care Planning Interventions Across Dementia Stages: A Systematic Review

“…The studies originated from the United States (Ahronheim, Morrison, Morris, Baskin, & Meier, 2000; Catic et al, 2013; Cohen et al, 2019; Hanson et al, 2017; Hilgeman et al, 2014; Mitchell et al, 2018; Orsulic‐Jeras, Whitlatch, Szabo, Shelton, & Johnson, 2019; Reinhardt, Chichin, Posner, & Kassabian, 2014; Song et al, 2019) and the United Kingdom (Brazil et al, 2018; Sampson et al, 2011). The study designs were randomized controlled trials (Ahronheim et al, 2000; Brazil et al, 2018; Cohen et al, 2019; Hanson et al, 2017; Hilgeman et al, 2014; Mitchell et al, 2018; Reinhardt et al, 2014; Sampson et al, 2011) and pre‐ and post‐test with or without a control group (Catic et al, 2013; Orsulic‐Jeras et al, 2019; Song et al, 2019).…”