In this short essay, I present a work in progress of a research project on the COVID-19 pandemic and the ethical issues that this pandemic and the way it has been handled have raised for clinical practices and public health measures.
Many public health departments, medical institutions and health organizations around the world developed bioethical guidelines to help health professionals, administrators and public authorities in their decision-making processes from triages of COVID-19 patients in a context of scarcity to public health strategies to slow the spread of the coronavirus. These guidelines vary a lot from country to country. This makes sense because each country has different cultural and socioeconomic contexts as well as different health systems which require guidelines able to answer how the challenges of this pandemic are presented within the particularity of each country. Sometimes, the strategy must be even more localized to consider the specificity of a particular region within a country. For instance: challenges to address the COVID-19 pandemic in São Paulo City with 11 million people and in a community in the Amazon region are not the same, although both areas in Brazil are covered by the same public health system. The USA has similar challenges, such as differences between rural and urban areas and the health care resources available for them.
Although bioethical guidelines and protocols for clinical practices and public health measures vary significantly from region to region, I have noticed that these guidelines have been developed by health professionals and leaders from the perspective of where they are located. This is justified considering the urgency for guidelines and support that a pandemic demands. However, most of these bioethical protocols did not include voices from communities, especially from those who use health care services and are likely to need them in case of being infected by the coronavirus. The same criticism applies to public health measures that did not include the voices of those at the bottom, especially representatives of marginalized groups, such as Blacks, immigrants, indigenous persons, and the poor, who were disproportionally impacted by the pandemic. In Brazil and the USA, these communities suffer more with infections, hospitalizations and deaths. In addition, they are more impacted by the socioeconomic consequences of the COVID-19 pandemic, such as unemployment, housing eviction and hunger.
At the beginning of the pandemic, the context of urgency justified a top-down approach to develop guidelines to address the ethical challenges raised by COVID-19. However, time has passed and it is important to assess and improve these bioethical protocols. Today, we know more about the coronavirus and COVID-19. We know more about what worked and what didn't work. And we know that the challenges created by this pandemic do not impact all people in the same way. We are not all in this together as many of us said in March and April of 2020. An apt metaphor now is: We are all in the same ocean, but while some people are in luxurious boats and yachts, others are in rafts, clinging to a piece of wood while being hit by aggressive waves. Socioeconomic injustices and health disparities that were part of the U.S. and Brazilian societies before the coronavirus outbreak have been crucial in determining the fate of marginalized communities in the middle of the COVID-19 pandemic.
At this point in the pandemic, there is no justification not to include or consider the voices and experiences of marginalized communities in assessing and developing new bioethical guidelines for clinical practice and public health measures for COVID-19 patients along with strategies for resource allocation, mitigation of the spread, and vaccine distribution. Including these voices is an ethical imperative for Catholic health institutions that is rooted in Catholic social principles, such as preferential option for the poor and subsidiarity. These are all highlighted by Pope Francis as essential ethical guides to help us address this pandemic with a "shared passion to create a community of belonging and solidarity" (Fratelli tutti, no. 36).
Considering the bioethical challenges raised by the COVID-19 pandemic in clinical practice and in public health and the need to assess ethical protocols and guidelines developed to help address these challenges, this research is seeking to listen to voices of representatives of marginalized communities who have had a significant experience with COVID-19. These include persons who were infected and hospitalized, had a relative who was hospitalized or died, or who lost a job and socioeconomic status due to public health measures to mitigate the spread of the virus.
In numerous documents, texts and speeches, Pope Francis affirmed that we need to go the periphery of the world where the poor, the marginalized, and the most vulnerable are. In the periphery, we must have an encounter with those who are suffering in their reality, listen to them, and be open to learning from them. Although not official, this suggests the possibility of a potential new Catholic social principle: the principle of listening and learning from the other in an experience of encounter in the edges of existence.
In his recent encyclical, Francis affirms: "The ability to sit down and listen to others, typical of interpersonal encounters, is paradigmatic of the welcoming attitude shown by those who transcend narcissism and accept others, caring for them and welcoming them into their lives" (Fratelli tutti, no. 48). Moreover, the privileged place of encounter is the periphery, according to Pope Francis in last book Let Us Dream: The Path to a Better Future: "You have to go the edges of existence if you want to see the world as it is. I've always thought that the world looks clear from the periphery, but in these last seven years as Pope, it has really hit home. You have to make for the margins to find a new future" (p. 11). This teaching of Pope Francis guides this research in order to assess the ethical guidelines that were created to respond to the bioethical challenges raised by COVID-19.
From a global perspective, the collection of qualitative data and use of the dialogical educational method of Paulo Freire, combined with insights from Catholic Social Teaching, this research project is addressing key ethical challenges that the COVID-19 pandemic presents for socially vulnerable groups in Brazil and the USA, countries with different health systems and the top two with most deaths because of COVID-19. First, I mapped the main ethical dilemmas that COVID-19 pandemic has created for clinical practice and public health strategies, focusing on the experience of socially vulnerable groups, especially the poor and racially marginalized communities. Guidelines and protocols to respond to ethical challenges created by the pandemic are being confronted by narratives of experiences from patients, their families, and others from marginalized groups in order to understand the impact of these responses in their lives. Moreover, the result of this confrontation will be analyzed from the perspective of the Catholic Social Teaching as a guide for decision-making processes in health care that includes the need of socially vulnerable groups when clinical and public health strategies are developed to address a pandemic. The ultimate goal is to create resources for health institutions, particularly for Catholic health systems, and public health authorities to evaluate their current ethical guidelines and protocols, improve them or develop new ones, with the participation of new voices from communities in the context of this pandemic and for future epidemics toward more efficient, inclusive, fair and less controversial actions of health promotion.
Alexandre A. Martins, MI, Ph.D.
Theology Department and College of Nursing