Eliminating Racial Disparities in End-of-Life Care and Death Quality Through Policy Action

Project Summary

The project team is evaluating the effects and barriers of the 2016 Medicare reimbursement policy changes for advance care planning (ACP) and hospice care on racial disparities in ACP and death quality. They will work with focus groups consisting of Black and white caregivers and healthcare providers of recently deceased persons to understand their perspectives on the systemic barriers to better understand what they are and identify policy recommendations.

Research Question(s)

  1. What are the structural and institutional barriers to advance care planning and hospice care among Black patients? 
  2. Have changes in Medicare reimbursement of doctor-patient end-of-life consultations changed death quality disparities?


  1. The research findings will inform systems-level policy solutions on how to reduce the racial disparities in the quality of end-of-life experiences, especially for Black older adults and their kin. 
  2. The research will engage Black patients and caregivers in the development and dissemination of the research and inform healthcare policy, organizational practices, clinical care, and education that will lead to greater patient knowledge and empowerment.

Racial Equity Implications

Black Americans experience poorer quality deaths than whites, including more untreated pain, lower rates of hospice use, and receipt of care discordant with their preferences due to lower rates of ACP. Most research focuses on individual-level explanations such as patients' religiosity or health literacy, yet fails to consider Black patients' historic and contemporary marginalization in the U.S. healthcare system. Black Americans are more likely to receive aggressive but ultimately futile medical treatments at the end of life, are less likely to be referred to hospice, have shorter hospice stays before death, and are less likely to designate a trusted person to make decisions on their behalf when they cannot. Medicare reimbursement policies can potentially become a lever that can be used to improve end-of-life outcomes at the population level and also eliminate Black-and-white disparities therein – when they are deployed effectively.


Health outcomes: mental and physical stress, quality of end-of-life care including hospice use at the population level and Black-and-white disparities


Using a sequential mixed methods design, the team will provide a holistic and multi-level assessment of the enhancements and obstacles to attaining a high-quality death and racial disparities therein. This multi-level approach is intended to yield rich insights into the mechanisms through which Medicare reimbursement changes affect racial disparities in end-of-life care quality, with particular attention to multiple (and potentially discrepant) perspectives on these processes.

Black senior man sitting down and talking to a Black female doctor who is filling form listening to elderly patient
Grantee and Partner organizations

Vanderbilt University
Boston University

Grant status
In Progress
Principal investigators
Lucie Kalousová, PhD
Deborah Carr, PhD
Start date
Award amount
36 months

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