The Intersectional Impact of Race/Ethnicity and Sex on the Experience of Pain at the End of Life Among Older Adults

Background and Purpose: The experience of pain in the final months of life is one of several quality-of-life indicators among individuals with chronic illnesses. In the Clinical Guidelines for Quality Palliative Care, the National Coalition for Hospice and Palliative Care lists pain management as one of the key roles of the care team, including the assessment of and treatment of pain. Prior studies have found that Black, Indigenous and/or people of color (BIPOC) and females are more likely to experience negative end-of-life outcomes. However, no known studies have employed an intersectional approach to understand pain at the end of life. As such, the purpose of this study was to examine the experience of pain at the end of life among older adults based on the intersection of race/ethnicity and sex.

Methods: Data were derived from the 2012 to 2019 National Health and Aging Trends Study (NHATS), which is an annual longitudinal panel survey of Medicare beneficiaries aged 65 and older living in the United States. During each round of the study, the NHATS conducts a Last Month of Life (LML) interview with proxies of individuals who died between the previous and current round. The dependent variable was pain in the last month, which asked proxies whether the individual experienced pain in the last month or not (yes/no). The main independent variable was the intersection of race/ethnicity and sex, and additional explanatory variables guided by the social determinants of health were also included. Chi-square tests were used to determine the association between pain and each independent variable, and multivariate logistic regression models were employed to predict the experience of pain based on the intersection of race/ethnicity and sex.

Results: A total of 3,300 older adults were included in the study. After accounting for other explanatory variables, results showed that White females (OR=1.618, CI=1.613-1.623), Black males (OR=1.141, CI=1.133-1.148), Black females (OR=1.303, CI=1.295-1.311), Hispanic males (OR=1.131, CI=1.122-1.139) and Hispanic females (OR=1.279, CI=1.269-1.289) were all more likely to experience pain in the last month of life compared to White males.

Conclusions and Implications: The results of this study support the theory of intersectionality, with White males being the least likely to experience pain at the end of life. While pain is a primarily subjective experience, the level of pain an individual feels can be dependent on a number of factors including the severity of the illness, the attentiveness of the providers and the type of pain management method. With prior research showing that providers are more likely to disbelief complaints of pain among BIPOC and females, the pain experienced by BIPOC and females may result from provider bias and prejudice. Interventions should therefore include the improvement of communication about pain between providers and patients, with a focus on enhancing provider cultural humility and instilling patient trust. Future research should consider qualitative accounts to better understand the reasons behind these observed disparities and policy initiatives should address the improvement of health insurance among BIPOC individuals and females as a pathway to improving quality of care.