Articulating a justice ethic for rheumatology: A critical analysis of disparities in rheumatic diseases

Authors


A recent special section in Arthritis Care & Research addressed the problem of health disparities in the rheumatic diseases (1). These studies investigated differences in treatment and disease progression, revealing significant disparities between age, ethnicity, sex, and socioeconomic status. Collectively, these articles highlight broader concerns regarding access to treatment arising as a consequence of our health care system and augment the growing body of literature pertaining to inequities in health care delivery. Both the journal editors and the authors should be congratulated on directing our attention to such an important issue; however, the absence of commentary regarding the ethical implications that arise from these studies is noteworthy. More than simply a matter of health policy, these reports demonstrate the lack of distributive justice in our current health care system. Implied in these articles is the need for a deeper discussion within the field of rheumatology, one that seeks to understand the broader implications of these observations. It is not enough to simply observe these disparities; rather, there is a need to make explicit how their root cause is based in an ethical framework of justice and equality.

For individuals with chronic disease, the importance of equitable access to health care becomes all the more apparent. Rheumatic diseases often impair mobility, and therefore, at the most fundamental level, persons who are immobile are limited more broadly in their ability to participate in society and specifically in seeking medical care (2). Furthermore, due to the chronic nature of rheumatic diseases, effective treatment requires a consistent, longitudinal interaction with the medical system, a need not well served by our current construct of health care with its focus on acute conditions. There is the constant management of symptoms, the often complex medication regimens, and the need to balance daily activities with physical limitations. The medical system lacks an efficient integration and coordination of care to optimally deal with the continuity required in treating conditions such as the rheumatic diseases. To best care for this group of patients, we must understand how disparities interplay throughout the course of the disease. Therefore, in this commentary we will make explicit how ethical issues arise at all points along the rheumatic disease trajectory, first emphasizing variables contributing to the development of disease, then focusing on the variability in receiving a proper diagnosis and accessing treatment, and finally looking at disparities in followup care.

First, in examining how inequities place people at risk for the development of rheumatic disease, it is clear that various sociodemographic variables play an important role. As is shown by Busija et al (3) in the case of arthritis, lower education and income are strong predictors of arthritis in both men and women, controlling for other factors. Subsequently, throughout the progression of rheumatic disease, biologic constructs such as genetics and sex emerge as potential determinants of disease onset; nevertheless, socioeconomic and environmental factors emerge as more important influences over the disease course (4). These studies suggest that broader inequities in our society may have a direct impact on etiology of rheumatic diseases.

In addition to the impact disparities have on disease etiology, barriers to diagnosis also need to be understood using an ethical paradigm. Because early diagnosis in rheumatic diseases may be critical in lessening the permanent organ system damage and in some conditions disability and disfigurement, ensuring that all people receive accurate and timely diagnoses is of great concern (5). People with early rheumatic disease with few disease-specific features may not seek expert medical attention particularly when there are significant barriers to specialty care.

As is seen often in patients arriving at our hospital, patients may spend months, sometimes years, experiencing symptoms that go undiagnosed before receiving a proper diagnosis. These patients often have not had access to a rheumatologist in their neighborhood or community, may have been misdiagnosed, or have not been referred by their primary care physician until substantial damage has developed. Indeed, the study conducted by Gillis et al (6) demonstrated that patients with Medicaid travel farther to see a rheumatologist than people with private insurance. Increasing the burden of access in a population that already has a disease that is often disabling illustrates the problem of ensuring that all people are able to receive timely and proper diagnoses.

There are also disparities that are found in the treatment of rheumatic diseases. Many of these differences in treatment have sources that go beyond issues of access to care. Kane et al (7) demonstrated how total knee replacement (TKR), for instance, sorts along racial lines, with African Americans and Hispanics half as likely to undergo this surgery. Furthermore, Weng et al (8), in examining differences between races in utilization of knee replacement surgery, found that there were significant differences in factual knowledge, perceptions, and personal experience with TKR, differences that affect willingness to undergo the surgery. Additionally, some research (7) suggests that health literacy plays a significant role in utilization of TKR, as does the possibility of physician bias in referral and recommendation for the procedure. These studies demonstrate the complexity and multidimensionality of disparities in rheumatic diseases, and require future research and a varied framework to understand how the broad injustices that occur in our society influence in- equalities in health.

Finally, clear disparities in followup care and morbidity in rheumatic diseases have also been demonstrated. A multitude of barriers and broad inequalities not only in our medical care system but also in our society contribute to these unfair differences. For example, lower income and elderly patients with systemic lupus erythematosus are less likely to visit a rheumatologist for their followup care, and African Americans have significantly fewer rheumatology visits than whites (9). These results persist after adjusting for sociodemographic factors, health insurance, and disease severity, suggesting that a complex array of inequities in our society result in barriers to equitable followup care.

In the end, one of our primary goals is to lower the morbidity associated with rheumatic diseases. Yet, no matter how far medicine has come in terms of treatment and interventions, disparities will exist and people will not be properly cared for if we do not pay sufficient attention to the built environment in which we provide care. For example, Fernandez et al demonstrated that “overall poor socioeconomic status including less structured families, fewer years of formal education, higher levels of poverty, and inadequate health insurance may act not in an additive manner but in a synergistic manner over the years to account for the negative intermediate and final disease outcomes” that were observed (4).

If the aim of health care is “the prevention of death and disability, the relief of pain and suffering, [and] the restoration of functioning” (10), then effective health care should promote these aims through the enhancement of well-being by preventing illness and disability, allowing members of society to take full advantage of life's opportunities (11). As we have previously argued (2), ensuring that people have equitable access to health care becomes an issue of social justice, whereby it is the moral obligation of society to guarantee that people are treated fairly, with access to adequate care without excessive burden. As shown by Busija et al (3), people with rheumatic disease are less likely to report good health and well-being, and have higher levels of psychological distress. They endure physical disability, pain, and are unable to participate in many of life's activities. Thus, ensuring that persons with rheumatic disease have equitable access to medical care becomes an important ethical issue and a marker of justice in our society.

Taken together, these studies showcase how inequalities are not just standing differences in risk and morbidity in rheumatic disease, but that they represent true inequities—real differences that are “avoidable, unnecessary and unfair” (12). Therefore, if the disparities found within the current literature are due to previously hidden and unappreciated inequities in our society, then an elaboration of an appropriate ethical framework is needed to mitigate them. As such, we call for the rheumatology community to take on these issues by integrating ethics into their practice and research in order to move beyond simply acknowledging the disparities and ensuring ethically informed and just reform.

As written by Descartes, “the preservation of health is…without a doubt the first good and the foundation of all other goods of this life” (13). By expanding the range of current discourse in rheumatology to encompass general ethical principles and concepts, we follow Descartes' call to ensure a just society through the preservation of health. An ethical examination informs and strengthens our collective resolve to address the distributive justice claims of this marginalized population whose illness, with its attendant chronic disability, only compounds questions of inequity of care. Through such efforts, those involved in health care, specifically the care of the rheumatic diseases, can ensure that we develop a health policy that leads to creating a more just and fair society.

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