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A new study published in the Journal of the American Medical Association Internal Medicine (JAMA IM) found several factors – including staff assumptions about minoritized groups – may play a role in the variability in the quality of care provided to U.S. nursing home residents with advanced dementia 

The study, “Nursing Home Organizational Culture and Staff Perspectives Influencing Variability in Advanced Dementia Care: The ADVANCE Study,” identified organizational factors and staff perceptions at nursing homes that may drive known variability in the type of care provided nursing home residents with advanced dementia, especially in the use of more aggressive interventions like tube-feeding or hospitalizations. These aggressive interventions are considered by many to be markers of poor quality of care, as they often do not promote clinical benefits or comfort among persons with advanced dementia. 

Prior research has shown Black residents (versus white residents and those in facilities in the southeastern part of the United States) get more aggressive care, including greater use of feeding tubes and hospital transfers. 

Ruth Palan Lopez, Ph.D., G.N.P.-B.C., F.A.A.N., Professor and Associate Dean of Research, Jacques Mohr Chair at MGH Institute of Health Professions School of Nursing, and Susan L. Mitchell, M.D., M.P.H., Senior Scientist, Hinda and Arthur Marcus Institute for Aging Research at Hebrew SeniorLife and Professor of Medicine at Harvard Medical School, are the lead authors of the study.   

“The study identified several factors that nursing homes could target to improve delivery of goal-directed care to all residents. One is to improve provider knowledge and communication skills that less aggressive interventions may be more in line with the residents’ wishes and best evidence,” said Dr. Lopez. “For example, many nurses may believe that feeding tubes prolong the life of advanced dementia patients, but this is not borne out by existing studies. Nursing homes need to make sure their staff is aware that hand feeding is better for residents. Based on prior research, aggressive interventions can be less effective compared to less-intensive interventions, like feeding residents manually, while requiring more time of the nursing staff provides better care to their patients.” 

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The most concerning finding was that staff in nursing homes had preconceptions that families of Black residents did not want to engage in advance care planning and preferred more aggressive care.                                                                                                   

“Staff preconceptions that Blacks are less willing to engage in advance care planning and want more aggressive care speaks to the need to address systemic racial biases in nursing homes,” said Dr. Mitchell, noting that nursing homes in the United States tend to be racially segregated and low-resource homes tend to have more Black residents. “Achieving health equity for all nursing home residents with advanced dementia must be the driving force behind all efforts aimed at reducing disparities in their care.” 

Researchers conducted 169 staff interviews at 14 nursing homes in four states. They identified factors that were typical of nursing homes that provided less intensity of care including: the quality of the physical environment (e.g., good repair, non-malodorous), the availability of standardized advance care planning, greater staff engagement in shared decision-making, and staff understanding that feeding tubes do not prolong life. Aggressive intervention was considered suboptimal. 

More equitable advanced dementia care, the study concluded, may be achieved by addressing several factors, including staff biases towards Black residents. Other solutions include increasing support and funding for low-resourced facilities, standardizing advance-care planning, and educating staff, patients, and their families about evidenced-based care and goal-directed decision-making in advanced dementia. 

Other researchers collaborating in this study work at Beth Israel Deaconess Medical Center, Harvard Medical School, Meyers Primary Care Institute, University of Massachusetts Medical School, Oregon Health & Science University School of Nursing, the University of Tennessee at Martin, Emory Center for Health in Aging and the Nell Hodgson Woodruff School of Nursing at Emory University, the Center for the Study of Aging and Human Development at Duke University School of Medicine, and the Geriatrics Research Education and Clinical Center at Veteran Affairs Medicine Center. 

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