Monday, September 10, 2012
Barbara A. Noah (Professor of Law, Western New England University, School of Law) recently published her article entitled The Role of Race In End-Of-Life Care, 15 J. Health Care L. & Pol'y 349 (2012). The introduction from the article is below:
More than a decade into the twenty-first century, racial discrimination, de facto segregation, and all of the inequalities that flow from these conditions remain firmly embedded in American society. The impact of racial inequality and racism on the health of African Americans and other racial and ethnic minorities often results in concrete threats to the lives of individual patients and, more generally, is fundamentally inconsistent with the ethics and goals of the health professions. Racial disparities in health care delivery and dysfunctional communication between physician and patient at the end of life can combine to exert a pernicious impact on the process of dying--a process that by its nature poses challenges to individual identity and autonomy.
Even as a portion of society clings to and perpetuates biases against those in the minority, health professionals, health institutions and regulatory bodies must try harder. At the governmental and institutional levels, policy makers must redouble their efforts to address persistent health disparities. At the individual patient level, physicians and other health care providers owe each patient their best effort--to respect and know each patient as an individual and to provide care for each patient that is consistent with that person's values, preferences, and beliefs. Some physicians already succeed in communicating well with their patients, but many others struggle with the necessary skills, time pressure, discomfort about confronting death and dying, biases and assumptions about their patients, or simply a lack of awareness of the issues involved in end-of-life care.
Previous research in the area of health disparities has demonstrated that African Americans and other racial and ethnic minorities suffer disproportionately from certain diseases and are in poorer health overall compared to white Americans. African Americans also have shorter life expectancies and higher rates of infant and maternal mortality. Class independently influences health as well, and the gap in wealth between whites and racial minorities continues to widen--the median wealth of white households is now 20 times that of African American households. Other factors such as “health literacy”--the ability to obtain, understand, and utilize health information--also play a profound role. A large body of literature addresses the widespread prevalence and causes of health disparities. Apart from disparities in health, there is overwhelming evidence that race adversely affects the amount and quality of health care provided to minority patients. In broader terms, there is irrefutable evidence of racial bias in health care delivery. The lasting effects of societal discrimination impact the quality of care that minority patients receive and, consequently, their trust in the health care system and its providers. Although attention to these problems in the academic literature has raised awareness of the issues, all agree that there are no simple solutions.
This essay focuses on one important aspect of racial disparities that has received comparatively little attention in the legal literature--the existence and causes of racial differences in end-of-life decision making and in the utilization of palliative and hospice care. African Americans and other racial minorities in the United States utilize palliative care and hospice less frequently than white Americans. These minority populations also tend to resist advance care planning and instead opt to receive more life-prolonging care at the end of life, even when quality of life and prognosis are poor. After a lifetime of limited access to health care compared with whites and, in some cases limited treatment options (because of lack of insurance coverage or biased clinical judgment by physicians), African Americans and other racial and ethnic minorities utilize strikingly higher levels of aggressive, life-prolonging care at the end of life. Much of the explanation for these disparities in end-of-life care appears to lie in problems with communication and trust between physician and patient, although broader influences of culture and religious belief also play a role. The complexities of communication between minority patients and their physicians run in two directions, creating a destructive synergy that can dampen empathy in the relationship and negatively impact care at the end of life. Although many cultural factors play a role in the decision making of African American patients regarding end-of-life care, this essay focuses primarily on issues of trust and communication because these impact African Americans most directly.
Several responses to these trends deserve consideration, including improving those aspects of medical education that emphasize quality communication and cultural competence, recruiting more physicians from different races in order to build trust at the institutional and individual level, relaxing rigid notions of when hospice and palliative care are appropriate, and recognizing that more medical care at the end of life does not necessarily produce better outcomes. The United States is a nation that struggles collectively with confronting mortality and has witnessed significant ethical and legal conflicts about appropriate end-of-life care in individual cases. In this broader context, minority patients must navigate the dying process with all of the additional complexity that arises from lack of trust in the system, poorer overall health status, limited access to care and, sometimes, the biases of health care providers. Unfortunately, though unsurprisingly, the law addresses these issues only at the margins.