Racial/ethnic disparities are well-documented in the VA healthcare system, however, little is known in the area of end-of-life (EOL) care. Our preliminary work suggests the presence of large and significant disparities by race/ethnicity in family perceptions of the quality of care received by the Veteran and family at EOL, despite equal use of hospice and palliative care services. These findings illuminate the need to identify other care processes as well as organizational features that may explain the differences we observe. Racial/ethnic minorities are more likely to prefer life-prolonging, intensive measures near EOL and may be more likely to experience burdensome transitions as compared to non-minorities. These care patterns may contribute to overall dissatisfaction with care when rated by patients and their families; however, the nature of these relationships in VA is not known. A growing body of literature also suggests that the organization of nursing care- a modifiable characteristic of healthcare facilities - may play a key role in moderating racial/ethnic disparities, but has not been explored in the context of EOL care.
The objectives of this project are to: 1) examine end-of-life (EOL) care patterns, including burdensome transitions and intensive EOL care, comparing racial/ethnic minority to non-minority Veteran populations; and to describe organizational nursing characteristics of VA Medical Centers where minority and non-minority Veterans are cared for at the EOL; 2) identify the extent to which observed racial/ethnic differences in family perceptions of EOL care quality are associated with EOL care patterns and modifiable aspects of nursing care organization, including nurse staffing, the nurse work environment, and racial/ethnic diversity of nursing staff; and 3) explore the perspectives of bereaved family members of racial/ethnic minority and non-minority Veterans on factors that influence quality of EOL care, including EOL care patterns and nursing care.
We will employ a concurrent triangulation, mixed methods study design using a variety of VA secondary data sources collected between Fiscal Years (FY) 2011-2015. Major data sources include: the Clinical Data Warehouse (CDW), the VA Nursing Outcomes Database (VANOD), and the Bereaved Family Survey (BFS) - a well-validated instrument completed by bereaved family members of Veterans. The sample will include nearly all inpatient deaths in 142 VA Medical Centers nationally (n=~46,000) during the study period. BFS responses are available for nearly 60% of these decedents (n=~25,000). Multi-level logistic regression models will be used to examine the main effects of end-of-life care patterns and VA Medical Center organizational factors on end-of-life (EOL) racial/ethnic disparities in family perceptions of EOL care quality, as well as any potential cross-level interactions between patient- and facility- level factors. A modified grounded theory approach will be used to achieve the qualitative aim of the study.
As the Veteran population continues to grow in age and diversity, greater focus on care at end of life (EOL) will become imperative. Currently, there is a dearth of evidence to guide culturally-tailored, Veteran-and family-centered EOL care in VA Medical Centers.
- Agha A, Kutney-Lee A, Kinder D, Shreve S, Keddem S. "That is Care That you Just can't fake!": Identifying Best Practices for the Care of Vietnam Veterans at End of Life. Journal of pain and symptom management. 2020 Oct 17.
- Del Rosario C, Kutney-Lee A, Sochalski J, Ersek M. Does Quality of End-of-Life Care Differ by Urban-Rural Location? A Comparison of Processes and Family Evaluations of Care in the VA. The Journal of rural health : official journal of the American Rural Health Association and the National Rural Health Care Association. 2019 Sep 1; 35(4):528-539.