Caregiver holding a resident's hand

A study of end-of-life care for nursing home residents with advanced dementia has found a persistent — but not necessarily accurate — assumption among clinicians, administrators and other staff that Black residents’ families prefer intensive interventions.

Investigators observed operations and conducted interviews with 169 staff members in 14 nursing homes across four states. The facilities that practiced low-intensity care for residents with advanced dementia had more pleasant physical environments and more standardized advance care planning processes, reported senior author Susan L. Mitchell, M.D., of Hebrew SeniorLife in Boston and Harvard Medical School. These facilities also had greater staff engagement in shared decision-making, and staff members who did not value tube feeding.

Yet in all of the nursing homes, staff members expressed assumptions that “proxies for Black residents were reluctant to engage in advance care planning and favored more aggressive care,” Mitchell and colleagues reported. 

It’s a bias that must be addressed, the authors concluded.

“Given pervasive staff biases toward proxies of Black residents, achieving health equity for nursing home residents with advanced dementia must be the goal behind all efforts aimed at reducing disparities in their care,” they wrote.

The 169 staff member participants included administrators, directors of nursing, nurses, certified nursing assistants, social workers, occupational therapists, speech-language pathologists, dieticians, medical clinicians and chaplains.

The study, titled ADVANCE (Assessment of Disparities and Variation for Alzheimer Disease Nursing Home Care at End of Life), was conducted between June, 2018 and July, 2021. 

Full findings were published in JAMA Internal Medicine.