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Ensuring fair treatments is ethical responsibility
Health care institutions need to do more to ensure minority patients receive equal access to breast cancer screening and aggressive therapies, according to information collected by a researcher at the University of Pittsburgh Gradu ate School of Public Health.
The good news is that the ethics committee can take a leading role in ensuring fairness in treatments and procedures among all patients in the hospital.
According to his recent analysis of several national research studies, black and white women experience similar outcomes when they are diagnosed at the same stage of disease and given similar treatment. Nationwide, however, mortality rates for black women meet or exceed those of white women, even though the incidence of breast cancer is lower among African-Americans.
"I did an overview article, combining a lot of research on this topic," explains James J. Dignam, PhD, research assistant professor at the school’s department of biostatistics. Dignam is author of a study published in the January issue of CA: A Cancer Journal for Clinicians.1 "It seemed that [in] the studies that take into account early detection, similar stage of diagnosis, and then treatment for disease stage — when those factors are comparable — the outcomes are more similar."
The findings indicate that the disparity in outcomes is largely due to environmental and social factors rather than physiological differences in disease progression among the two groups.
Although some of the studies reviewed indicated differences in tumor size, tumor resistance to therapy, and age at diagnosis (which may indicate a small propensity to poorer prognosis for black women), those factors were not enough to justify the significant disparity in outcomes, Dignam adds.
Differences in receiving appropriate therapy
Most disturbing among the findings were indications that black and elderly women at some institutions were less likely to receive diagnostic and therapeutic options in accordance with nationally accepted guidelines for breast cancer treatment. "With a lot of studies, what we saw was that the treatment that was given at a particular stage was not necessarily the optimum," he says.
For example, when studies compared women with the same stage of disease, black women more often showed characteristics associated with poorer prognosis, which would call for more aggressive therapies, such as chemotherapy in addition to or instead of tamoxifen therapy. But, many of the studies reviewed showed that black women were not undergoing those therapies.
In addition, many of the studies indicated that black women were much more likely to receive total mastectomy rather than lumpectomy with radiation therapy in cases where either procedure would be appropriate.
Dignam attributes that to a knowledge gap at certain institutions of the latest evidence-based recommendations for treating those conditions.
"The National Institutes of Health [NIH] frequently convenes consensus panels of experts, and sometimes experts from other areas do the same," he says. "They form guidelines on when certain diagnostic tests should be ordered and — based on the result — which treatments are indicated. Because we are at an institution [Univer sity of Pittsburgh] that performs clinical research, we are aware of these recommendations when they are being made. But we tend to forget how long it can take for that information to get out and become part of the common practice."
Dignam also attributes the disparity to economic factors. More black women may seek treatment at financially strained urban hospitals with fewer resources available for diagnostic testing and early detection screening. "If the early diagnosis isn’t there, then often the other treatment options are not going to be possible," he adds.
Additionally, there’s the issue of insurance. Patients with inadequate or no insurance may be given treatment options that are less expensive.
The problem isn’t limited to women with breast cancer, experts say. Minority Americans have problems getting equal treatment from the health care system across the board, not just for breast cancer, and the reasons are complex, advises Barbara Ross-Lee, DO, dean of The Ohio University College of Osteopathic Medicine and the first African-American woman to head a U.S. medical school.
"There is an institutional bias against minorities in the system, which is compounded by access issues," says Lee. "One of the largest barriers is poverty, then whether the patients are uninsured or underinsured. But it is not that simple to think that changing poverty, specifically, would solve everything. There are other social and cultural factors as well."
For example, a Department of Veterans Affairs retrospective review of cardiac patients2 found that the only significant difference in whether some patients received catheterization or revascularization procedures while others did not was the patient’s race, she continues.
To counter ethnic bias, hospitals need to be aware that the cultural and social biases of their clinicians will be reflected in the overall care their patients receive, says Ross-Lee. Ethics committees play a crucial role in ensuring policies are developed to address the potential for discrimination.
Compounding that problem are issues related to minorities’ trust of institutional systems such as hospitals, she adds. "Often, minorities delay and do not seek treatment for a long time. There is a historical culture in the minority community that avoids use of the health care system. Because they tend to come in isolated from the large institutional system . . . there has never been any effort to build their trust."
In many of the trials Dignam studied, black women were more likely to be diagnosed with a more advanced stage of breast cancer, indicating they may have waited longer before seeking treatment, he says. That can have the most significant impact on the patient’s survival.
"The stage of the primary breast cancer at diagnosis remains the foremost determinant of ultimate outcome," he writes in the research paper. "The benefit obtained from effective treatments is modest compared with the predictive effect that disease stage has on prognosis."
What hospitals should be doing
Hospitals first should strive to ensure they are following the latest treatment recommendations from the NIH and other consensus panels, says Dignam. Standard treatment guidelines will reduce the possibility of patients with the same disease characteristics receiving unequal treatment. Hospitals also must communicate the need for early diagnosis and preventive screening to all patients more effectively, he adds.
Those changes are not likely, however, until health systems are held accountable for the health of their communities at large, Ross-Lee says.
"In my opinion, we need to start looking at ways to hold institutions and providers accountable for overall health," she says. "Right now, we hold them accountable through our legal system for errors related to disease, but we need to also hold them accountable for health status. If you are in a community, by virtue of the fact that you are the health system in that community, the health status of that community is your responsibility."
For example, hospitals that discover they are diagnosing a number of black women with late-stage breast cancer should feel it is their responsibility to facilitate preventive screening and breast cancer awareness in that community, Ross-Lee says. "We need to put that level of accountability for health into the health system."
Both Dignam and Ross-Lee say minorities also are underrepresented in clinical research, and recruiting more minority participation is needed to help discover the reasons for the disparity in health outcomes and determine the remedies.
"We don’t get the recruitment we would like, even in our trials," Dignam says. "We have a percentage of minority participation that is relative to their presence in the population, but the overall studies are not large enough that we have a significant number of African-American, Asian, and other minorities represented."
Research only means to treat
The numbers of minority participants are not high enough to determine the impact of different treatments in those specific populations, Ross-Lee agrees. However, she expresses concern that some medical policy-makers see more minority participation in research as a direct means of providing at-risk populations with access to new and/or costly treatments.
"There is an ethical question for me in that it seems that some people are saying that the only way women can achieve the appropriate treatment, or the full range of options of treatment, is by engaging in research or by becoming a research subject," she says. "It is very scary. I do hear people propose that the way to improve the access of minorities to care is that they should go into research projects.
"At the same time, you hate to oppose this when you know that there are women out there dying because they don’t have all of the options or the cutting-edge treatments, but I think that is our default position. If we did the job we are supposed to do [in providing equal access to screening and treatment], then this issue would have never come up."
1. Dignam, JJ. Differences in breast cancer prognosis among African-American and Caucasian women. CA Cancer J Clin 2000; 50:50-64.
2. Peterson ED, Wright SM, Daley J, et al. Racial variation in cardiac procedure use and survival following acute myocardial infarction in the Department of Veterans Affairs. JAMA 1994; 271:1,175-1,180.
Kahn KL, Pearson ML, Harrison ER, et al. Health care for black and poor hospitalized Medicare patients. JAMA 1994; 271:1,169-1,174.
• James J. Dignam, University of Pittsburgh, Graduate School of Public Health, Department of Biostatistics, 403 Professional Building/GSPH, Pittsburgh, PA 15261.
• Barbara Ross-Lee, DO, The Ohio University, College of Osteopathic Medicine. Contact: Carl Denbow, Director of Communications, OU-COM 330 TEB, The Ridges, Athens, OH 45701.