Jane McGrail reports back from the April 2022 conference “A Crisis of Caring: The Humanities and Our Health”, where the National Humanities Center of North Carolina facilitated Medical Humanities conversations across an interdisciplinary cohort of experts.
Conference panelists included scholars, medical practitioners, and industry leaders. Held virtually to accommodate participants from diverse backgrounds and regions, the conference sought to investigate humanistic methodologies and epistemologies as tools for ameliorating the multiple crises facing healthcare today. In discussions catalyzed by the shared goal of elucidating the contributions the humanities can make to medicine, panelists built on one another’s diverse perspectives and varied areas of expertise. Over the course of four days of productive conversations, speakers and participants theorized about how humanistic modes of inquiry help to construct a practice of medical care that is based on empathy and that holds in balance the simultaneous human needs of both patients and practitioners.
Humanistic inquiry as a remedy for the pain of caring
As the conference’s title, “A Crisis of Caring: The Humanities and Our Health,” suggests, the nature of care was a key theme underpinning many of the conversations. Care, throughout this conference, assumed many forms, including the care that practitioners provide to their patients, the care that people take of their loved ones, and the moments where the practice of care is undermined by inequitable practices and systemic oppression. Panelists and attendees raised questions about how to care for clinicians, particularly during public health emergencies like the COVID-19 crisis, what it really means to practice care, and how health care can better recognize and support community-based caring.
In the conference’s keynote address, Rita Charon, Professor of Medicine and of Medical Humanities and Ethics at Columbia University, talked with Jane Thailkill, current Fellow of the National Humanities Center, about healthcare worker burnout and moral injury, and the remedy that humanistic inquiry offers for the pain of caring. In practice, Dr. Charon and her Narrative Medicine team at Columbia University have found that robust investigations of texts, art, and music help to reduce isolation and allow health care workers to begin to process the trauma they experience when care is in crisis.
Connected to the humanities’ potential to make space for broader practices of care is their ability to ask questions that encourage nuance. Humanistic methodologies serve as a corrective to scientific processes that seek singular answers. During her discussion with Jane Thrailkill, Charon advocated for the value of the humanities in medicine because, “It’s the creativity and the capacity to tolerate the ambiguity and to value the ambiguity that makes for great science. And it’s the capacity to ask a really great question.”
Asking radical questions
Panelists during the conference’s “Building a Speculative Archive” session picked up on Charon’s ideas and considered how developing careful and nuanced questions can allow for more equitable forms of medical care to flourish. By examining a crowd-sourced archive of objects, reflections, and art, panelists and conference attendees alike were challenged to imagine possible futures for medicine, health, and wellness. Discussants ultimately suggested that one way to bring more just speculative futures into being is by asking radical questions, attuning ourselves to a diverse range of voices, and putting inclusivity at the heart of our practices of care. One example of this work which was considered by the panel was the National Humanities Center’s COVID-19 Oral History Project, which seeks to preserve the untold stories of the pandemic by interviewing health care workers whose contributions are often made invisible. Panelists theorized this practice, of publicly recording the stories that belong to people on the margins, as a way for care to be built through asking questions, listening, and respecting multiple perspectives. These thinkers concluded that seeking ambiguity, collecting stories, and giving voice to people who have been silenced are forms of care that have the capacity to improve future responses to health care crises.
Across the conference, panelists also confronted health care’s role in perpetuating violations of the principle of care. They advocated for the humanities as tools to advance a more equitable practice of medicine by acknowledging and responding to the urgent health care crisis of systemic injustice. The panel, “Access and Inclusivity in American Medicine,” did the necessary work of acknowledging the structures of oppression, colonization, enslavement, and racism that have shaped the accessibility of health care. Speaking on the panel “Building a Speculative Archive,” Yolonda Y. Wilson, Associate Professor, Albert Gnaegi Center for Health Care Ethics at Saint Louis University, puts this problem clearly with the striking statistic that, “If all adults had died at the same rate as college educated white people, 71% fewer People of Color would have perished,” during the COVID-19 pandemic (Wilson 2022).
Global health crises do not affect all communities in the same way
Continuing the conversation on healthcare injustice, “Medical Research and Global Health Equity” panelists advocated for local and community-based health care efforts. In a discussion moderated by Robert Newman, President and Director of the National Humanities Center, leaders from organizations ranging from non-profits with specializations in grant-making and international development to biopharmaceutical corporations, agreed that global health crises do not affect all communities in the same way. This means that it is essential to prioritize local responses and community-led ways of knowing. Informed by humanistic methodologies in practice, they presented listening as the most important tool for promoting health justice because it begins the process of rebuilding the trust that has been violated by histories of atrocity and inequity in medical practices.
The thinkers on panels across the conference called for a renewed emphasis on communication in health care and maintained that humanistic learning allows medical providers to practice empathetic listening and recognize patients as individuals rather than data. The conference community posited that medical education is a site where humanistic tools and methodologies can be integrated into health care practices. Jacqueline Kellish, Director of Public Engagement at the National Humanities Center, moderated a discussion with author Eula Biss about her powerful piece, “The Pain Scale,” where they took up important considerations about communication between patients and practitioners. After Biss’s opening conversation with Kellish, all conference participants were given the opportunity to engage in dialogue with Eula Biss about their shared experience of reading “The Pain Scale.” A recurring theme throughout this discussion was the difficulty of translating subjective experiences of pain for others. Biss spoke compellingly about the value of intentional metaphors as expressive tools for patients in the medical sphere. Imposed carelessly, Biss acknowledges, metaphors can perpetuate systemic harm. Harnessed carefully, however, metaphors can be powerful tools for supporting empathy and finding a common language between patients and providers.
Resisting the weaponisation of metaphors
Speaking from a diverse range of professional roles and backgrounds, including photography and filmmaking, neurology, medical illustrations and graphic medicine, biomedical communication, and creative writing, our “Genres of Empathy” panelists also thought deeply about metaphor in medicine. They addressed the need for people working in medicine and medical education to resist the weaponization of metaphors, which have, for example, been used to justify forms of discrimination against transgender individuals. Sneha Mantri, Assistant Professor of Neurology and Director of the Program in Medical Humanities at Duke University, articulated the important role that the study of narrative can play in uncovering the ways these metaphors become embedded in our cultural consciousness. Narrative can also help us to educate health care workers and the public on how to resist these damaging ways of thinking and speaking.
The importance of a medical humanities-based approach to educating the next generation of providers came up again in the panel entitled, “Caring and Understanding in a Global Health Context.” Panelists spoke about the importance of medical education that takes a holistic view of health as more than just the absence of disease. They articulated the danger of constructing dichotomies that undermine the complexity of varied and multiple human experiences and advocated for a policy of mutual caring that would use humanistic knowledge to promote equity in healthcare.
A vision of hope for the future of caring and of medicine
Although these discussions laid bare some of the ongoing crises facing health care practices worldwide, panelists shared a vision of hope for the future of caring and of medicine. In “Genres of Empathy,” panelists reflected on co-creation as a tool for avoiding what Chimamanda Ngozi Adichie calls, “the danger of a single story” (Adichie 2009). Tying together the ideas about asking careful questions and listening closely that reverberated throughout the conference, panelists called for the use of humanistic tools to bring people from diverse backgrounds together to tell their stories. The “Access and Inclusivity in American Medicine” panel shared hope that, because the CDC declared racism a public health crisis in 2021, we can commit to redressing the wrongs that have been committed against people on the margins and work to build a more equitable future where race and social class are not the primary determinants of health outcomes. The week’s concluding event, the “Building a Speculative Archive” discussion, left us with a reminder that this work is hard, but that a future of equitable care will only be built by confronting these challenges.
Adichie, Chimamanda Ngozi. 2009. “The Danger of a Single Story.” Filmed October 2009 at TED2009, Long Beach California. https://www.ted.com/talks/chimamanda_ngozi_adichie_the_danger_of_a_single_story.
Charon, Rita. 2022. “A Time of Crisis | A Crisis of Time.” Filmed April 2022 at A Crisis of Caring: The Humanities and Our Health Conference, National Humanities Center, North Carolina. https://nationalhumanitiescenter.org/crisis-of-caring-humanities-and-our-health/#recordings.
Wilson, Yolonda. 2022. “Building a Speculative Archive.” Filmed April 2022 at A Crisis of Caring: The Humanities and Our Health Conference, National Humanities Center, North Carolina. https://nationalhumanitiescenter.org/crisis-of-caring-humanities-and-our-health/#recordings.
About the author
Jane McGrail is a doctoral candidate and teaching fellow in the Department of English and Comparative Literature at the University of North Carolina at Chapel Hill. She also leads community engagement and instruction for the COVID-19 Oral History Project at the National Humanities Center. Her research focuses on community literacy and public pedagogy.