Reducing Racial Disparities at End-of-life: Using Narratives to Build Trust and Promote advance Care Planning

Abstract

Black Americans are less likely than White Americans to have advance directives, die while receiving hospice services, or have their end-of life wishes honored. The root causes of disparities include imbalance of resources, lack of trust in health care institutions, lack of adequate education regarding end-of-life options, communication differences of health care providers with black vs white patients, variable access to hospice services in different communities, and poorer pain management for Black patients compared to White patients. Because root causes are numerous, comprehensive solutions are required. When advance care planning is in place, people are more likely to choose care focused on priorities and comfort than on seeking aggressive, sometimes futile, interventions in the last weeks of life. One important component of the solution should include listening to narrative stories of Black people as they encounter life-limiting diagnoses. Gathering the stories about life events and how strength was found through adversities can be a tool for growing trusting relationships and engaging in shared decision-making. Health care professionals should invite Black patients with serious illnesses to explore the sources of their strengths and identify their core values to work toward developing directives for the nature and place of their end-of-life and help to mitigate disparities in high quality end-of-life care.