For more than five decades, Vernellia R. Randall, JD, MSN, BSN, professor emerita at the University of Dayton School of Law, has focused on disparities in healthcare for minorities and the poor. She also is the founder and editor of Race, Racism, and the Law (www.racism.org). In this Q&A, which has been lightly edited for length and clarity, Randall discusses how ethicists can play a crucial role in eliminating disparities.
MEA: What is the bioethics role in eliminating disparities in healthcare?
Randall: Traditional bioethics limits itself to individual problems and individual issues. Consequently, [bioethics] doesn’t deal with the needs of the community, particularly the African American community. That’s a flaw in how bioethics thinks. That’s a major issue that they have to deal with. There is no way to eliminate racial health disparities without focusing on the community. For instance, as a public health nurse, I understood that if I want to improve the health of the community, I have to look beyond the health of the individual. Bioethics has to do the same.
MEA: How can the ethics service start?
Randall: By asking questions of the hospital. Bioethicists can say, “We in bioethics are really concerned and want to ensure that this hospital isn’t systemically racist, because that is a bioethics issue. We need data on what you are doing. We need to be able to assess and recommend things to you.” Dealing with individual problems will only take us so far. I think a bioethics committee could legitimately ask for more information from the hospital. Before you start cleaning the community, you need to clean your own house. Ask questions like, “Are there more complaints from patients of color? What is the nature of those complaints? Is it something we as a committee can deal with?”
As soon as you begin to ask those questions and ask for information about your own institution, your institution will start to change. I wholeheartedly believe that is the lowest level of change that a person on the bioethics committee on a hospital can do. It may not go anywhere initially. A law school just ... adopted a model I recommended 20 years ago. Those things get pushed into the institutional memory. At some point, it may have an impact that you may not even know about. Just asking for the information will prompt changes. This comes from my belief about lawsuits. Lawsuits are effective because nobody wants to be sued. As soon as you have a lawsuit about something, the system changes.
All discrimination in this country is not illegal. Negligent discrimination is not illegal. It’s up to the bioethics committee to say, “This may not be illegal, but it’s still unacceptable.”
MEA: What else can bioethicists do in the hospital setting to drive change?
Randall: The bioethicists could be the lead on training hospitals on what disparities in social determinants of health exist in the African American community and why it’s important to eliminate those.
That might be something hard to get their head around, because bioethicists deal with issues of the individual patient. But it’s unethical to sit in an institution where there’s disparities. If you’re a bioethicist and you don’t know whether disparities exist, you’re being willfully blind. If you find out ... there is a disparity, then you would be obligated to do something about it as a bioethical issue.
Make sure that the African American community is represented on the hospital’s patient advisory committee. Are they represented in sufficient numbers, where one person doesn’t end up having to be the only voice for a whole community, or get drowned out because there are only one or two people? The patient advisory committees often function in such a way that they are sort of like grand juries. They kind of deal with whatever the hospital brings in front of them. The bioethicist can sit in the meeting and ask questions that you know is going to stir up stuff — not only in the minds of the people who are leading the hospital, but also the other people on the committee. It says to them: You have a right to ask for a lot more.
MEA: How can bioethicists be most effective in examining clinical practices at their own institutions, in areas where research has shown racial disparities?
Randall: You’ve got to arm yourself with all the ethical arguments and be ready to make a case for why.
Disparity in pain management is an ethical issue. Bioethicists can ask for data on what’s happening based on race in the institution, in terms of pain management. Bioethicists can also ask to see all the data on restraints. You can set up a subcommittee whose only issue is going to be looking at the records produced regarding restraint — who’s being restrained, for how long, and how it’s being carried out.
It can be a real substantive evaluation of one issue. That kind of approach will bleed into other areas. The hospital will say, “If they are going to start wanting this kind of information, we need to look at other areas as well.”
If not the bioethicist, who else in the hospital system is going to be responsible for checking to make sure that systemic racism isn’t occurring within the hospital? To me, bioethics has an interest, because of the ethical principle of justice, in making sure that the community is treated appropriately.
If the response is going to be, “We don’t collect that kind of data,” that in itself is a problem. The only reason not to collect race-based data, in this day and age, is because you don’t want to have to analyze it. The bioethics committee should not accept that the data are not collected. If you are asking for any demographic information other than date of birth, then you need to collect race and ethnicity data. If the response is, “People don’t like to give that data,” that is a problem. You can always put that someone preferred not to answer, and then that’s part of the analysis. You can look at how many people preferred not to answer and [if] that group [is] different in any way. As a member of the ethics committee, it is not your responsibility to do all of this. It’s the hospital’s responsibility. You are not collecting or analyzing the data. You are just asking questions. You’re a bioethicist. Asking questions is what you can do.