Background: 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 of VA Medical Centers (VAMCs) 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.
Specific Aims :
The specific aims of this project are to: 1) examine 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 VAMCs 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. Significance and Relevance to Veterans' Health: As the Veteran population continues to grow in age and diversity, greater focus on care at EOL will become imperative. Currently, there is a dearth of evidence to guide culturally-tailored, Veteran-and family-centered EOL care in VAMCs. Methodology: 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 VAMC organizational factors on 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. Innovation: No study, within or outside of VA, has examined the intersection of patient factors, the organization of nursing care, and racial/ethnic disparities in quality of EOL care. This study will also include the largest qualitative assessment to date of racial/ethnic minority family members' perceptions of care received by Veterans at EOL. Expected Results: By identifying the relative importance of Veteran- and facility-level characteristics that contribute to the development of racial/ethnic disparities in satisfaction with EOL care received in VAMCs, this study will provide immediate actionable knowledge, as well as foundational evidence for the development of intervention efforts to achieve an equitable and Veteran-centered healthcare system.
Bereaved family members of black and Hispanic Veterans surveyed by VHA rate the quality of end-of-life care in VA Medical Centers significantly lower than whites, and it is unclear why. While most Americans, including Veterans, say they would prefer to die at home, many die in the hospital, putting them at risk for receiving poor quality care that is not consistent with their preferences. The risk may be especially high for racial/ethnic minorities. This study will examine how specific care provided, such as complex transitions and intensive medical interventions, and broader organizational factors related to nursing care may contribute to racial/ethnic differences in bereaved families' perceptions of end-of-life care quality for Veterans. These data are needed in order to guide the development of interventions and policy responses for reducing disparities in VA end-of-life care.