Understanding and addressing structural racism and its impact on the quality of end-of-life care in older Black adults
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Older Americans are not all likely to receive high quality end-of-life (EOL) care due to the substantial variations in care quality as well as in goal-concordant care, adequate pain treatment, and palliative care access across organizations and geographic regions. Despite decades of research documenting variation in EOL care quality, there has been little progress in achieving uniform improvement. This is in part due to a failure to recognize organizational and systems-level factors (e.g., education, employment, and healthcare systems) as a root causes of variation in care quality. There is a critical gap in our understanding of how organizational and systems-level factors the life course influences the quality of serious illness care for older adults near the end of life. The objective of this project is to understand and address those factors as they relate to the systems level the quality of care provided near the end of life. I use a research approach that centers mutual learning and collaborative planning with local patients. This project’s career development plan will provide Dr. Elizabeth Dzeng with skills and knowledge in participatory research methods, implementation sciences, clinical trials, leadership in local-academic partnerships, geriatrics, and life course perspectives. A Beeson award will enable her to become an independent investigator in understanding and addressing the role of systems-level factors in EOL care using participatory methods and support her long-term goal of becoming an international research leader in geriatric palliative care. This study will be conducted at the San Francisco Bay Area to enable understanding of the influence of local and organizational histories, policies, and regions on healthcare. Dr. Dzeng has already been establishing local connections and developing her Patient Advisory Board. The first aim of this proposal seeks understand older adults’ experiences with systems-level factors and how these are perceived to influence care near the end of life. The project’s second aim is to examine how individual and organization-level factors influence the quality of care provided near the end of life and assess what enables or prevents improvements within healthcare organizations. The third aim is to refine and test an intervention that connects hospital leaders and local representatives to tailor a co-ordinated care approach aimed at improving the experience of older adults near the end of life. This study is highly innovative because it would be the first study to examine and address organizational and systems-level factors in geriatric palliative care using life course perspectives and participatory research methods. It uses novel interview and participatory methods to examine the multi-level factors that contribute to variation in EOL care. This study is significant because it will develop understanding at a deeper level of end-of-life care varies for patients with different life courses and address this variation through a multi-disciplinary, multi-component intervention. This study will inform a future R01 application for a multi-center hybrid effectiveness-implementation pragmatic trial of an organizational-level protocol intervention to mitigate variation EOL care quality.
PROJECT SUMMARY/ABSTRACT Black Americans are less likely to receive quality end-of-life (EOL) care in part due to racial disparities in goal- concordant care, inadequate pain treatment, and reduced palliative care access, among others. Despite dec- ades of research documenting racial disparities in EOL care, there has been little progress in rectifying these inequities. This is in part due to a failure to recognize structural racism (e.g. anti-Black discrimination and mis- treatment created and reinforced by multiple societal institutions including education, employment, housing, policing, and healthcare) as a root cause of racial disparities. There is a critical research gap in our under- standing of how structural racism influences racial disparities in the receipt of quality EOL care and interventions to address them. The objective of this Beeson proposal is to understand and address structural racism and its influence on the receipt of quality EOL care in older Black adults. This project's career develop- ment plan will provide Dr. Elizabeth Dzeng with skills and knowledge in CBPR, implementation sciences, clinical trials, leadership in community academic partnerships, structural racism scholarship, geriatrics, and life course perspectives. A Beeson award will enable her to become an independent investigator in understanding and addressing structural racism in EOL care using CBPR and support her long-term goal to become an inter- national research leader in health and racial equity in geriatric palliative care. This study will be conducted at two sites, the San Francisco Bay Area and Birmingham, Alabama, to provide institutional and local variation to enable understanding of the influence of local and institutional histories, policies, and cultures on healthcare. Dr. Dzeng has already been establishing community connections and developing her Community Advisory Board. The first aim of this proposal seeks to understand the lived experiences of structural racism that older Black adults face and how they perceive it influences EOL care. The project's second aim is to understand how structural racism at the institutional and community level drives inequities in the provision of quality EOL care and the barriers and facilitators to institutional change. The third aim is to design, pilot, and determine the ac- ceptability and feasibility of an intervention that adapts a multi-component pathway to hospitals to mitigate structural racism in EOL care. This study is highly innovative because it would be the first study to systemati- cally examine and address structural racism in geriatric palliative care using life course perspectives and CBPR. It uses novel interview methods and CBPR to examine the multi-level factors that contribute to racial inequities in EOL care at a systemic level. This study is significant because it will develop understand at a deeper level of how structural racism impacts end-of-life care and address structural racism through a multi- disciplinary multi-component intervention. This study will inform a future R01 application for a multi-center hy- brid effectiveness-implementation pragmatic trial of an institution-level anti-racism protocol development intervention to mitigate structural racism in EOL care.
