Intern JAMA Med. 2022 Jan 24. doi: 10.1001/jamainternmed.2021.7921. Online ahead of print.
IMPORTANCE: Regional, facility, and racial and ethnic variability in the intensity of care provided to nursing home residents with advanced dementia is well documented but poorly understood.
OBJECTIVE: To assess factors associated with facility and regional variation in the intensity of care for nursing home residents with advanced dementia.
DESIGN, CONTEXT, AND PARTICIPANTS: In the qualitative study ADVANCE (Assessment of Disparities and Variation for Alzheimer’s Disease Nursing Home Care at End of Life), conducted June 1, 2018 through July 31, 2021, nationwide 2016-2017 Medicare Minimum Dataset information identified 4 hospital referral regions (HRRs) with high (n=2) and low (n=2) intensity of care for patients with advanced dementia based on hospital transfer rates and tube feeding. Within these RRHs, 14 facilities providing relatively high-intensity and low-intensity care were recruited. A total of 169 nursing home staff were interviewed, including administrators, directors of nursing, nurses, certified practical nurses, social workers, occupational therapists, speech therapists, dietitians, medical clinicians and chaplains.
MAIN OUTCOMES AND MEASUREMENTS: Data included 275 hours of observation, 169 staff interviews, and abstraction of public nursing home materials (eg, websites). The framework analyzes explored organizational factors and staff perceptions in HRH and nursing homes in the following 4 domains: physical environment, process of care, decision-making process, and implicit and explicit values.
RESULTS: Of the 169 staff interviewed, 153 (90.5%) were female, the mean (SD) age was 47.6 (4.7) years, and 54 (32.0%) were black. Tube feeding rates ranged from 0% in 5 low-intensity facilities to 44.3% in 1 high-intensity facility, and hospital transfer rates ranged from 0 transfers per resident-year in 2 low-intensity facilities to 1.6 transfers per resident-year in 1 high-intensity facility. The proportion of black residents in facilities ranged from 2.9% at 1 low-intensity facility to 71.6% at 1 high-intensity facility, and the proportion of Medicaid recipients ranged from 45.3% at 1 low-intensity facility. 81.3% intensity in 1 high intensity facility. intensity setup. Factors distinguishing facilities providing the least intensive care from those providing the most intensive care facilities included a more pleasant physical environment (eg, in good condition and not smelly), standardized advance care planning, more high staff commitment to shared decision-making and unstated staff values against tube feeding. Many perceptions of staffing were pervasive (e.g. adequate staffing needs), with no distinct trend between nursing homes or HRMs. Staff at all nursing homes expressed the assumption that proxies for black residents were reluctant to engage in advance care planning and favored more aggressive care. With the exception of nursing homes with the least intensive care, many staff believed that feeding tubes prolong life and have other clinical benefits.
CONCLUSIONS AND RELEVANCE: This study found that variability in the care of patients with advanced dementia can be reduced by addressing modifiable nursing home factors, including improving support to low-resource settings, standardizing advance care planning and educating staff about evidence-based care and shared decision-making. Given the pervasive staff bias against Black resident surrogates, achieving health equity for nursing home residents with advanced dementia must be the goal behind all efforts to reduce disparities. in their care.