A study of people diagnosed with cancer in North Carolina found that American Indians experienced lower-quality end-of-life care compared to white patients, according to UNC Lineberger Comprehensive Cancer Center researchers. Their findings are published in JNCI: the Journal of the National Cancer Institute.
Marc Emerson, PhD, MPH, and his colleagues conducted a retrospective cohort study of 163,285 North Carolinians (1,769 American Indians and 161,516 whites) who were diagnosed with cancer and died between 2003 and 2018. They found American Indians had higher rates of hospital and ICU admissions as well as emergency department visits in the last 30 days of life. Previous studies have linked these aggressive care measures with poorer quality of end-of-life care.
The data were drawn from the UNC Lineberger Cancer Outcomes Research Program’s Cancer Information & Population Health Resource (CIPHR). CIPHR connects cancer data with real-world factors — linking incidence, mortality and burden in North Carolina to health care, economic, social, behavioral and environmental trends impacting both individuals and communities.
The researchers report that within the study population, American Indians were nearly 80% more likely to live in a rural setting (54.5% vs. 30.4%) and more than twice as likely to be enrolled in Medicaid (22.6% vs. 9.8%), compared to whites. Furthermore, they found that American Indians who were younger, lived in more rural communities and were eligible to enroll in Medicaid were most likely to receive poorer end-of-life care.
Emerson said the researchers conducted the study to help identify the distinct end-of-life care needs of the American Indian population, including cultural preferences.
“By understanding the factors influencing care decision-making and identifying the structural and geographic barriers limiting access to care, we can help guide the development of policies and interventions to promote high-quality, culturally appropriate end-of-life care, including palliative and hospice care,” said Emerson, assistant professor of epidemiology at the UNC Gillings School of Global Public Health and UNC Lineberger member.
While these findings provide general insights, Emerson said developing a better understanding of tribal and individual preferences will be more beneficial.
“There is not one shared perspective on end-of-life care, so it will be important to engage with tribal communities to develop palliative and hospice care that is culturally relevant,” Emerson said. “This will inform the next steps of designing effective cancer interventions specifically for North Carolina tribal communities.”
Authors and disclosures
A complete listing of authors is available in the published paper.
This work was supported by the V Foundation for Cancer Research.