COMMENTARY: by Kristy F. Woods, MD- Maya Angelou Center for Minority Health, Wake Forest University, Winston Salem, NC
Historical Perspectives on Racial Attitudes and the Impact of Health Care Disparities on End-of-Life Care in the African American Community
How do racial attitudes and disparities in healthcare impact end of life decisions? The past century has witnessed incredible advances in the prevention, diagnosis and treatment of acute and chronic diseases. With current and anticipated developments at the cellular and molecular level, future opportunities for continuing these advancements to improve life expectancy and quality of life for Americans are enormous. For those with incurable disease our ability to provide comprehensive care and palliation has similarly improved. Despite these achievements, it is clear that all of our citizens have not benefited equally. Differences in the incidence, prevalence, mortality rate of disease and other adverse health conditions persist among racial and ethnic minorities, the underinsured, and the poor in our country and remain a national tragedy.
On almost every health indicator collected by various U.S. government agencies, African Americans fare significantly worse than do white Americans. The 2005 National Healthcare Disparities Report notes that racial disparities in healthcare quality extend throughout the American healthcare system and are observed in almost every aspect of care, including end-of-life care. Payne and Freeman’s chapter draws specific attention to the historical perspective of these differences, highlighting that disparities in health status and healthcare quality have plagued blacks in this country for more than 350 years.
Any professional who manages the care of African American patients understands that the sources of racial and ethnic disparities are complex. In addition to the role of behavioral, environmental, and genetic factors, there is overwhelming evidence that access to care and healthcare quality significantly impact health outcomes.
This chapter highlights the overarching contribution of social and political influences on health determinants and inequities in healthcare. Sociopolitical factors have always impacted - and will continue to impact - poverty and socioeconomic status, public policy, health policy, and prejudice and/or bias based on race. For instance, the authors note that racial bias and stereotyping by healthcare professionals, while perhaps subconscious, may contribute to the lower quality of healthcare observed among African Americans, in general. For the chronically ill, vulnerable minority population dealing with end-of-life issues, differential decision-making based on race complicates the already challenging delivery of supportive services and palliative care.
The article concisely reviews the end-of-life movement and the growth of hospital and community-based hospice programs in America during recent decades. The goal of palliative care is to provide a death free of avoidable distress and suffering - that is, ’a good death,’ as defined by the Institute of Medicine Committee on End of Life Care. Payne and Freeman note that while African Americans comprise 13% of the US population and experience disproportionate death rates from HIV/AIDS, cancer, heart disease and other chronic conditions, fewer than 10% are utilizing hospice care. I believe that this disturbing fact touches on one of the most fundamental concerns regarding end-of-life care for African Americans - the urgent need to address the multifactorial causes of disparate healthcare quality and utilization.
For example, one may assume it is a part of the human condition to desire a ’good death’. Why then, are African Americans not utilizing available services at the same rate as whites? How does lifetime experience with the healthcare system influences end-of life decisions? Addressing these questions requires a comprehensive approach. Lack of access to quality and continuous care may result in lack of knowledge about these services. Lack of a primary care provider may also result in a black patients being referred less frequently to long and short-term care facilities. In addition, patient-centeredness of care takes on a more significant role as a quality indicator at the end of life. African Americans more often report poor patient-provider communication and mistrust of the healthcare system. Unique cultural and spiritual views may also contribute to decision-making during this time.
In order to fully reduce or eliminate healthcare disparities at the end-of-life, we must first address the compound causes of racial disparities that occur throughout the lifespan and that are highlighted historically in this chapter. We must also move forward with a patient-centered approach that focuses new efforts on the unique needs of African American patients, their families and their caregivers.