By Sara K Shaw Green and Claudia R Baquet.
The impact of COVID-19 on the United States has been and continues to be devastating. While the scientific community has advanced research to identify and combat the SARS-CoV-2 virus at an astounding rate, data continue to emerge that reflect how COVID-19 continues to disproportionately impact our nation’s most vulnerable and medically underserved populations. Rural communities are particularly vulnerable to the social, economic, and systemic consequences of COVID-19. These communities are intertwined with economic and systemic inequalities in healthcare infrastructure and access, higher rates of chronic disease and comorbidities, higher rates of poverty associated with reduced life expectancy in comparison to their more urban counterparts. Despite these known challenges and disparities among rural populations, rural communities continue to experience poor outcomes as a result of the ongoing pandemic, with a lower rate of COVID-19 testing and vaccine uptake, a higher resistance to public health recommendations, and a disproportionate rate of illness and mortality as a result of SARS-CoV-2 infection when compared to their urban counterparts.
Further expounding these disparities, rural communities have also received inconsistent guidance, and inadequate planning and implementation of public health measures, resulting in significant levels of mistrust in public health guidance and science. The inconsistency between public health messaging and policy implementation, often with little consideration for the cultural, social, and economic, consequences resulting from these one-size-fits-all methods implemented within isolated, rural areas, have drastically hindered effective public health measures.
In Florida, these concerns are especially pronounced, with continued high rates of transmission and fewer individuals fully vaccinated when compared to other parts of the United States. According to the most recent data from the Centers for Disease Control, of the 30 rural counties in Florida, nearly all have lower than 40% of its population fully vaccinated, with more than half of those counties less than 30%. Comparing these data to that of urban populations, Florida counties like Miami-Dade (62.2%), and Orange (51%), we see a significant disparity between rural and urban communities that requires further analysis. With the rapid rise of the Delta variant and current unchecked community spread present in Florida, it is imperative that researchers, clinicians, and public health officials assess the social, ethical, and behavioral implications (SEBI) of pandemic response, particularly within rural communities.
Conventional bioethical approaches often involve ethicists and researchers focusing on solving ethical dilemmas, inadvertently conscripting the field to a reactionary model in response to pressing ethical quandaries. As such, the constructs of conventional bioethics in the practical world are more commonly translated through policy, law, and health practice. Although conventional bioethical approaches are often subject to philosophical/theoretical and practical opposition, these prime facie principles are prevalent in every facet for which there are expectations of ethical conduct, thusly influencing the interpretation of meaning in the roles, decisions, and behaviors of medical providers, public health officials, researchers, and community members, often resulting in conflicts that are directly associated with poor health outcomes. These conflicts, as evidenced during COVID-19 public health emergency with the disconnection between public health recommendations and political decisions, has resulted in communities at odds with who to trust for consistent, ethical, and accurate guidance . It is imperative that these concerns be viewed through a lens that is both relevant and specific to individual communities, in order to fully understand the factors underpinning COVID-19 testing behavior and vaccine uptake, particularly among those communities most at-risk and for which measures have already been implemented and have fallen short.
Narrative bioethics is an approach related to the philosophy of ethics and implementation of ethical principles in biomedicine that explores the intersectionality between narrative and storytelling with that of values and morals as perceived by the communities or populations of whom are the subjects of ethical inquiry . It is through the lens of narrative bioethics that providers may identify causes of resistance to recommended health behaviors, minimize confusion caused by complex or community-irrelevant information, expand the reach of public health interventions to those not easily accessible by current strategies, increase engagement of those who may be otherwise uninvolved, and ground public health communications and medical practice in an ethical and inclusive framework. In stark contrast to conventional bioethical approaches largely founded on utilitarian principles and enforced through legal and regulatory guidelines, narrative bioethics incorporates the unique lived experiences of individuals as not only a tool for ethical decision making, but for ethical practice. Regarding COVID-19 and its disparate outcomes on medically underserved communities, particular attention should be paid to the narratives that exist between and among individuals in isolated, rural communities, to obtain localized and culturally relevant insights into effective public health strategies. The collection of narrative does not supplant evidence-based care, but rather compliments it by allowing a full consideration of the patient’s unique story, while simultaneously upholding the principles of autonomy and justice, particularly as it is both applied to and experienced by the patient.
Authors: By Sara K Shaw Green and Claudia R. Baquet,
SSG: Center for Translational Behavioral Science at Florida State University, College of Medicine
CRB: The Hope Institute; The University of Maryland (retired)
Competing interests: None declared.