Executive Summary
Health disparities for minorities are continuing due to multiple complex factors. In addition to social justice, the economic cost of disparate care is an ethical concern. According to experts, bioethicists can:
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Approach hospital leaders to lobby for organizationwide changes.
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Educate providers on providing culturally competent care.
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Raise the issue of disparate care during ethics consults.
A recent tragic case involving informed consent obtained from parents with limited English proficiency led to a successful lawsuit against the hospital. The parents were told the risks of surgery for their child included kidney damage, but there was no interpreter in the room.
“The child ended up on dialysis for the rest of his life. The parents sued, and the hospital settled for $12 million in a matter of weeks,” says Thomas A. LaVeist, PhD, director of the Johns Hopkins Bloomberg School of Public Health’s Hopkins Center for Health Disparities Solutions.
“This is a tragedy on so many levels — not only for the family, but also for the hospital, the surgeon, and the people served by the hospital,” says LaVeist.
From an ethicist’s perspective, social justice is an obvious reason to care about health and inequalities. “But that’s not the only reason why this matters. There is a utilitarian argument as well,” LaVeist says. “It is expensive to pay out claims of that type, or to have people be sicker than they should be.”
Eliminating health disparities for minorities would have reduced direct medical care expenditures by $229.4 billion for the years 2003-2006, according to a 2011 study.1 “If we don’t get a handle on health disparities, the implications are far bigger than social justice,” says LaVeist, the study’s lead author.
Clearly, more is being done now to address disparities than five or 10 years ago, says Augustus A. White, III, MD, PhD, director of the Culturally Competent Care Education Program at Harvard Medical School in Boston. White is author of Seeing Patients: Unconscious Bias in Health Care (Harvard University Press, 2011). “So in that sense, there’s progress — but not in the sense of epidemiological studies that show disparities that were once noted are gone,” he says.
Under the Affordable Care Act (ACA), adds White, “more people are insured. That’s an important issue, because it means people are likely to have some kind of care.”
Also, the National Center on Minority Health and Health Disparities, created in 2000, was re-designated as the National Institute on Minority Health and Health Disparities under the ACA. “So it has more clout, and hopefully will be more effective in diminishing disparities,” says White.
However, Cynthia Jones, PhD, associate professor of philosophy and director of the Pan American Collaboration for Ethics in the Professions at The University of Texas–Pan American in Edinburg, has little confidence that the ACA will lead to a decrease in health disparities.
Conditions need to be ameliorated earlier, she says, to prevent diseases like Type 2 diabetes from reaching the point where they are critical. “Health disparities are the result of a complex tangle of factors, and despite decades of attention and research, we have yet to see movement in these disparities,” says Jones. “Dumping more money into high-cost care is unlikely to affect change.”
Problem is multifactorial
Reducing disparities is “an extremely complex issue,” says White. “Healthcare itself is so complex, with many variables — policies, politics, human behavior and technology. All of those things are very formidable problems.”
Bioethicists have an obligation to do whatever they can to diminish healthcare disparities, says White. This includes approaching hospital leaders.
“Ask CEOs and chiefs of services if there is a place for some specific institutional engagement on disparities,” he says. When such matters are discussed, says White, “the ethicist needs to be at the table. The issue is it’s not ethical to penalize people for being in some particular group by providing care that is less good.”
To address healthcare disparities at their institutions, bioethicists can do the following, according to experts:
“Historical inequities have resulted in lack of trust, which can impact health outcomes,” says Jones. “Providers can attempt to mitigate trust issues through stressing culturally competent care.”
The bioethicist can point out that a particular condition tends to be managed in a disparate fashion. “Ask, ‘What can we do to ensure that this patient is receiving good and appropriate care, and not disparate care?’” says White.
“People are trying to explore ways to provide feedback to physicians, so they can learn if they are thought to be culturally competent,” says White, adding that physicians with poor feedback can obtain training to improve their cultural competence.
Disparate care often occurs unintentionally. “Everyone has biases. The bias is only a problem if it impacts behavior,” says LaVeist. “Awareness might help people to check themselves.”
Committees can unknowingly make decisions that have a differential impact on patients based on their race, ethnicity, or income status. “Someone needs to be in a position to say, ‘What is the impact of this on the vulnerable populations that we serve?’” says LaVeist. “Often, there is no one making that observation.”
If hospitals are viewed as unfriendly to minorities, this will affect their market share negatively. “With the expansion of Medicaid comes a whole new market of paying customers who previously didn’t get care or got uncompensated care,” says LaVeist. “Why wouldn’t you want to get their business?”
Such decisionmaking usually occurs at the board level, says LaVeist, “and it trickles down to the operational level of people running departments. But I never see bioethicists involved.”
Bioethicists need a good understanding of the financial cost of disparate care in order to call attention to the problem at the institutional level.
“Bioethicists tend to be more comfortable with a social justice framework, but utility is quite important,” says LaVeist. “It is the language that administrators are going to understand.”
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LaVeist TA, Gaskin D, Richard P. Estimating the economic burden of racial health inequalities in the United States. Int J Health Serv 2011; 41(2):231-8.
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Cynthia Jones, PhD, Associate Professor of Philosophy/Director, Pan American Collaboration for Ethics in the Professions, The University of Texas–Pan American, Edinburg. Phone: (956) 665-8081. Email:[email protected].
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Thomas A. LaVeist, PhD, Director, Hopkins Center for Health Disparities Solutions, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD. Phone: (410) 955-3774. Fax: (410) 614-8964. Email: [email protected].
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Augustus A. White, III, MD, PhD, Director, Culturally Competent Care Education Program, Harvard Medical School, Boston, MA. Phone: (617) 998-8802. Fax: (617) 998-8808. Email: [email protected].
