Tag: Medical Humanities

Health Humanities: An Anti-Racist Response to the Hidden Curriculum in Medical Education

Posted on by OTH

by Craig M. Klugman

Craig M. Klugman, Ph.D. is Vincent de Paul Professor of Bioethics & Health Humanities at DePaul University in Chicago. 

Medicine has a race problem. 

Many people have heard of the health disparities that affect people of color in the United States: They are less likely to have a primary care physician (KFF), less likely to have health insurance coverage (Branch and Conway), and suffer from higher rates of illness and death (Hill et al.).

Fewer people know that this problem also manifests in health care workers. First, there are fewer health care professionals of color than there should be based on their percentage of the U.S. population (Sullivan Commission). This means that a patient from a minority community is less likely to have a physician or a nurse who looks like them or shares their background. Second,  a recent study shows that racial health inequities in the U.S. health care system during the first years of the COVID-19 pandemic led to increased burnout and moral distress in all health care providers, no matter their race (Buchbinder et al.). 

Historically, Black patients were often denied care at hospitals, and real estate redlining meant that they likely lived (and continue to live) in medical deserts. Add in fewer economic opportunities as well as fewer educational opportunities and Black patients have had less access to being able to pay for medical care. 

Advances in medical knowledge often used Black patients as research subjects, seldom with their knowledge or consent. In the mid-1800s, James Marion Sims, the father of obstetrics and gynecology, developed surgical techniques on enslaved Black woman with neither their consent nor anesthesia (Lynch; Spettel and White). During the 40 years of the Tuskegee Syphilis Trials (1932-1972), 600 Black men were studied to observe the progression of their disease. However, health care professionals and researchers never informed the men of their disease nor how to protect their partners and the men were told that research tests were “treatment”. Once penicillin (the cure) was available, study personnel prevented the men from getting access. This history and many more examples created distrust of the medical community that has lasted until today. 

While modern medical school curriculums teach students to respect all patients and to treat people according to their needs not by the color of the skin, racial inequities in medical care persist. In addition to the social determinants of health touched upon above, another factor may be “The Hidden Curriculum” (Hafferty and Franks). This is the material that is not listed in the syllabus, does not appear in the textbook and will not be on the exam. The hidden curriculum is the behaviors, attitudes, and implicit biases that students absorb from their faculty through their training. 

Much of the didactic (classroom learning) years of medical education take place in lecture halls and labs where students learn from textbooks and case studies. Studies show that medical textbooks feature predominantly white bodies (Ighodaro et al.). Thus, students learn to diagnose and treat diseases as they appear in people with lighter skin but not in people with darker skin. For example, cancer on white skin is often quite noticeable, but on Black skin, less so. The result is that skin cancers in Black patients are diagnosed later when the disease is at a more advanced stage, harder to treat, and correspondingly, survival rates are lower (Brady et al.). The case studies that form the background of students developing clinical thinking skills traditionally featured patients who are male, white, cis, heterosexual, and able-bodied (Plataforma SINC). 

When a student moves into the second phase of medical school where they work with patients in clinics and hospitals, they quickly learn to emulate their physician-mentors who model skills, tool, and behaviors that are sometimes derived from historic racism. These clinical preceptors also grade the students who quickly learn to repeat what they are shown—often without explanation, history, or evidence—and not to question (Klugman). Thus, the system perpetuates biased stereotypes to the next generation of health professionals. For example, the long-used algorithm to estimate kidney function unfairly penalized Black patients because the calculations are based on a convenient lie about the physical musculature of Black bodies. The result is that Black patients are less likely to be placed on the transplant list (Neal and Morse). In another study, subjects (including medical personnel) expressed a belief that Black patients felt less pain, a lie rooted in the horrors of slavery. The result is that some doctors undertreat pain in their Black patients today (Hoffman et al.). 

One potential avenue for training physicians and other health care workers to practice anti-racist medicine is through health humanities. This field employs the methods of the humanities and arts to explore the experience of human illness and wellness. By having health professions students learn close reading, metaphor analysis, observation skills, communication skills, historical analysis and more, they can become more aware of the structural racism that people experience in everyday life and in the medical system (Banner). 

The tools of the humanities teach students to identify presumptions and biases that are embedded in the practice of medicine, challenging them, and then changing them (Crear-Perry et al.). For example, at the University of Nebraska Medical Center, medical students created an art exhibit using QR codes placed around campus that encouraged people to learn more about the history of racism in medicine and its effect on the health of populations of color (Keenan). Graphic medicine can use comics (visual images + text) to shine light on injustice in medicine. In one comic, the artists graphically explain the Tuskegee Syphilis Study and the generational health costs of its legacy (Taylor and Kindred). 

Many schools take students to museums where they learn observation skills through looking at images of art, a method to help them see what is in front of them and move beyond stereotypes they may bring when seeing patients (Balhara and Irvin; Klugman et al.; Klugman and Beckmann-Mendez). Learning improvisational theater techniques can help clinicians communicate better with patients and to understand patient perspectives (Fessell et al.). Forum theater is a method where the audience interacts with the actors and the story on the stage. This experience can help students to see race and racism as experienced by their patients and peers  (Manzi et al.). Fiction writing asks students to write about the life and health care experiences of a person different than themselves, helping them up to understand living with health challenges and navigating the medical system (Saffran). In Experiential Race Testimonies, students study health disparity statistics and then learn the stories of real patients whose lives are encapsulated in that data, putting a human face on the numbers (Ray). These examples are a few of many that have been introduced to medical education. 

To use the humanities most effectively in anti-racist health education, one must read stories, watch films, and view art that are created by people of color and that take people of color as the central subject. The works should focus on how race, gender, disability, religious minorities, and sexual orientation “inform social, political, economic, and institutional structures, which then inform health and illness” (Banner). The health humanities can help students to learn to identify racist structures and practices, to bring the hidden into the light, to dismantle these discriminatory beliefs, and to be physicians and other health care professionals that work to bend the arc toward justice. 

This approach can lead to writing new case study narratives that feature a diverse cast of characters representing the wide range of patients to whom medical students will someday provide care, a step that some medical schools have undertaken (Sufian et al.). As for that kidney algorithm? In January 2023, a revised model was adopted that removes the racist assumptions (Organ Procurement & Transplantation Network). We also need to entice more students of color into the health care professions. Some effective methods have included removing standardized testing (which can have biased origins and questions), providing minority scholarships, mentoring, and role modeling. 

Perhaps most importantly, engaging in health humanities teaches students empathy—an ability to imagine what another person might be experiencing as well as sensing the emotions of another (Graham et al.). When working with patients who are different from the health care provider, empathy allows the imagination to see them as suffering human beings in need of care, deserving of compassion, and demanding respect. The result will be better health outcomes for patients, more inclusive medicine, and healthier healers. 

REFERENCES

Balhara, K. S. and N. Irvin. “”The Guts to Really Look at It”-Medicine and Race in Robert Colescott’s Emergency Room.” JAMA, vol. 325, no. 2, 2021, pp. 113-15, Medline, doi:10.1001/jama.2020.20888.

Banner, Olivia. “Structural Racism and Practices of Reading in the Medical Humanities.” Literature and Medicine, vol. 34, no. 1, 2016, pp. 25-52, doi:10.1353/lm.2016.0001.

Brady, J. et al. “Racial Disparities in Patients with Melanoma: A Multivariate Survival Analysis.” Clin Cosmet Investig Dermatol, vol. 14, 2021, pp. 547-50, PubMed-not-MEDLINE, doi:10.2147/CCID.S311694.

Branch, Breauna and Douglas Conway. “Health Insurance Coverage by Race and Hispanic Origin: 2021.” US Department of Commerce US Census Bureau, 2022. https://www.census.gov/content/dam/Census/library/publications/2022/acs/acsbr-012.pdf January 20, 2023.

Buchbinder, Mara et al. “Hospital Physicians’ Perspectives on Occupational Stress During Covid-19: A Qualitative Analysis from Two Us Cities.” Journal of General Internal Medicine, vol. 38, 2023, pp. 176-84, doi:10.1007/s11606-022-07848-z.

Crear-Perry, Joia et al. “Moving Towards Anti-Racist Praxis in Medicine.” The Lancet, vol. 396, 2020, pp. 451-53, doi:10.1016/S0140-6736(20)31543-9.

Fessell, D. et al. “Medical Improvisation Training for All Medical Students: 3-Year Experience.” Med Sci Educ, vol. 30, no. 1, 2020, pp. 87-90, PubMed-not-MEDLINE, doi:10.1007/s40670-019-00885-0.

Graham, J. et al. “Medical Humanities Coursework Is Associated with Greater Measured Empathy in Medical Students.” Am J Med, vol. 129, no. 12, 2016, pp. 1334-37, Medline, doi:10.1016/j.amjmed.2016.08.005.

Hafferty, Frederick. W. and Ronald Franks. “The Hidden Curriculum, Ethics Teaching, and the Structure of Medical Education.” Academic Medicine, vol. 69, no. 11, 1994, pp. 861-71, Medline, doi:10.1097/00001888-199411000-00001.

Hill, Latoya et al. “Key Facts on Health and Health Care by Race and Ethnicity.” Kaiser Family Foundation https://www.kff.org/racial-equity-and-health-policy/report/key-facts-on-health-and-health-care-by-race-and-ethnicity/. Accessed January 20 2023.

Hoffman, K. M. et al. “Racial Bias in Pain Assessment and Treatment Recommendations, and False Beliefs About Biological Differences between Blacks and Whites.” Proc Natl Acad Sci U S A, vol. 113, no. 16, 2016, pp. 4296-301, Medline, doi:10.1073/pnas.1516047113.

Ighodaro, Eseosa et al. “We Need More Illustrations of People of Color in Medical Textbooks — the Lack of Diversity Perpetuates Health Inequality and Stereot.” MedPage Today, 2022, https://www.medpagetoday.com/opinion/second-opinions/97383.

Keenan, John. “Project Explores History of Racism in Medicine.” University of Nebraska Medical Center, 2022. https://www.unmc.edu/newsroom/2022/05/10/project-explores-history-of-racism-in-medicine/. January 16, 2023.

KFF. “Adults Who Report Not Having a Personal Doctor/Health Care Provider by Race/Ethnicity.” Kaiser Family Foundation https://www.kff.org/other/state-indicator/percent-of-adults-reporting-not-having-a-personal-doctor-by-raceethnicity/. Accessed January 20 2023.

Klugman, Craig M. Does Medical Education Make Physicians Susceptible to Participating in Torture? Bioethics Today, 2013 Palo Alto, CA:  https://bioethicstoday.org/blog/does-medical-education-make-physicians-susceptible-to-participating-in-torture/. Accessed January 20, 2023.

Klugman, Craig M. et al. “Art Rounds: Teaching Interprofessional Students Visual Thinking Strategies at One School.” Academic Medicine, vol. 86, no. 10, 2011, pp. 1266-71, doi:10.1097/ACM.0b013e31822c1427.

Klugman, Craig. M. and Diana Beckmann-Mendez. “One Thousand Words: Evaluating an Interdisciplinary Art Education Program.” Journal of Nursing Education, vol. 54, no. 4, 2015, pp. 220-3, doi:10.3928/01484834-20150318-06.

Lynch, Sarah. “Fact Check: Father of Modern Gynecology Performed Experiments on Enslaved Black Women.” USA Today, 2020, https://www.usatoday.com/story/news/factcheck/2020/06/19/fact-check-j-marion-sims-did-medical-experiments-black-female-slaves/3202541001/.

Manzi, Joel et al. “Responding to Racism in the Clinical Setting: A Novel Use of Forum Theatre in Social Medicine Education.” Journal of Medical Humanities, vol. 41, 2020, pp. 489-500, doi:10.1007/s10912-020-09608-8.

Neal, R. E. and M. Morse. “Racial Health Inequities and Clinical Algorithms: A Time for Action.” Clin J Am Soc Nephrol, vol. 16, no. 7, 2021, pp. 1120-21, Medline, doi:10.2215

/CJN.01780221.

Organ Procurement & Transplantation Network. “Understanding Race & Gender.” US Department of Health & Human Services https://optn.transplant.hrsa.gov/patients/by-organ/kidney/understanding-the-proposal-to-require-race-neutral-egfr-calculations/. Accessed January 20, 2023.

Plataforma SINC. “Medical Textbooks Use White, Heterosexual Men as a ‘Universal Model.” ScienceDaily, 2008, www.sciencedaily.com/releases/2008/10/081015132108.htm.

Ray, Keisha S. “Going Beyond the Data: Using Testimonies to Humanize Pedagogy on Black Health.” Journal of Medical Humanities, vol. 42, 2021, pp. 725-35, doi:10.1007/s10912-021-09681-7.

Saffran, Lise. “Fiction Writing.” Research Methods of Health Humanities, edited by Craig M. Klugman and Erin Gentry Lee, Oxford University Press, 2019, pp. 268-86.

Spettel, S. and M. D. White. “The Portrayal of J. Marion Sims’ Controversial Surgical Legacy.” J Urol, vol. 185, no. 6, 2011, pp. 2424-7, Medline, doi:10.1016/j.juro.2011.01.077.

Sufian, S. et al. “Centering Patients, Revealing Structures: The Health Humanities Portrait Approach.” J Med Humanit, vol. 41, no. 4, 2020, pp. 459-79, Medline, doi:10.1007/s10912-020-09640-8.

Sullivan Commission. “Missing Persons: Minorities in the Health Professions.” Duke University Medical Center, 2016. general editor, Sullivan Commission on Divesrity in the Healthcare Workforce, https://campaignforaction.org/wp-content/uploads/2016/04/SullivanReport-Diversity-in-Healthcare-Workforce1.pdf Accessed January 20, 2023.

Taylor, Whit and Chris Kindred. “African-Americans Are More Likely to Distrust the Medical System. Blame the Tuskegee Experiment.” The Nib, February 26 2018, p. Comic. https://thenib.com/tuskegee-experiment/. Accessed January 17, 2023.

COMMENTARY: The Science of Can and Can’t

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by Alissa Simon

The laws of physics appear straightforward. From elementary school on, we learn of their lasting permanence. However, as theoretical physicist Chiara Marletto points out in her recent book The Science of Can and Can’t: A Physicist’s Journey Through Counterfactuals, they are far from perfect. She notes that we do not totally understand the nature of some of these laws, but also that these laws have been tested, and in some cases, replaced by theories of relativity. She writes, 

“There are no absolute sources of certain truth: any good solution to a problem may also contain some errors. This principle is based on fallibilism, a pillar of [Karl] Popper’s explanation of rational thinking. Fallibilism makes progress feasible because it allows for further criticism to occur in the future, even when at present we seem to be content with whatever solution we have found. It leaves space for creating ever-improving theories, stories, works of art, and music; it also tells us that errors are extremely interesting things to look for. Whenever we try to make progress, we should hope to find more of them, as fast as possible.” (16)

In other words, if we believe in progress, then we must believe in the fallibility of our best theories. Reading this book at times felt heretical, so strong was my grip on the laws of physics. (Please note that I am not a scientist, and so I have a high school vocabulary for much of this discussion.) Yet, Marletto’s words inspired me as no other recent non-fiction has. She asks us to think for ourselves and question our preconceived notions – even those seemingly permanent ones that we learned in school along the way. 

Reading this book inspired questions about humanity’s relationship to progress. Can humans sustain a mindset of perpetual unknowns? Marletto says that we should hope to find errors as quickly as possible, and I agree, but I also wonder what the human threshold for change might be. Constant questions challenge, and often annoy, us. Is that because of the way that we are taught about education and knowledge? Do we have misconceptions about the meaning of knowledge? We enter elementary school with a creative genius which colors the world any way we like. In primary grades, we are taught to look, explore, and question. However, snapshots of higher education show students taking notes, dictation, and tasked with memorization. This style of education may solidify the notion that knowledge is eternal. Marletto continues: 

“Any conjectured explanation which seems to be working may be found to be false at any time. As I said, this happened with Newton’s theory of gravitation when it was superseded by quantum theory and general relativity. We can never know whether a physical theory that we have formulated is true; all we can say is that it has so far not been found to be false. This may seem a little unsettling, but it is an extremely interesting fact about how knowledge is created; and, as I said, it is central to the possibility of making progress, via criticism.” (24)

This challenges my notions of knowledge, which previously felt monolithic, substantial, and solid. Marletto’s definition of knowledge is flexible, elastic, and tenuous. She accepts fallibility as a necessary feature of knowledge, which means that it is always subject to improvement and change. I sat with this notion for some time, and even re-read the end of her book while doing so because her words are extremely valuable and profound. Maybe I alone crowned knowledge king, in which case, I will work to unseat it from its throne. Rather than memorizing facts (which may or may not be useful depending on your discipline), I have the ability to become a better student. Open curiosity is a very valuable trait in lifelong learning.  And yet, so is knowledge. There is a tension here in the way that I want knowledge to be certain and steadfast, but also flexible. 

Marletto’s book incorporates literary analysis as a way to show how knowledge is a journey. This marvelous blend of disciplines breeds pathways to insight and carves the path for future science research, a path unmired from historical cement. Marletto asks us to create, to be creative readers, to evolve. She writes, “What matters is whether, along the journey, the character has or has not managed to create more knowledge while preserving his or her own individual capacity to create new knowledge. So an ending can be a fertile starting point; it depends on whether the character reaching the end is still capable of being creative. In fact, a successful nostos [return] does not have an ending. Its ending is the starting point of new adventures.” (225) Rather than accepting an end with finality, she claims that we have power to change and adapt, to find new questions and reassess our initial questions. Investigations become better as they gain data. 

I admit, this new way of thinking may not be new to everyone. Yet, more often than not, as educators, we assume our role is to instruct and form, to pass on knowledge of a firmer sort. What I would rather see in the classroom, however, is the ability to pass on questions. Demonstrate failure (a failed experiment or theory or manuscript, or what have you) as a step in the path towards success. What parts of our existing world have we not yet investigated? Where do our theories fail? Revitalizing questions will revitalize creativity, something that Marletto deems extremely important. She says, “Creativity is one of the main tools we have to form stuff that can last. If one is interested in making the good outcomes of our civilisation last and improve, then understanding how creativity is nurtured – both at the individual and at the societal levels – is essential.” (220) Fostering exploration will help students identify their own innate curiosity. 

I realize that this might cause stress for both educators and students. Constant challenge will unseat all stability. Questions that seem long resolved can be revisited, sometimes with fruitless efforts. All of this comes at the cost of time, so it is important that students select specialties based upon interests. Passion will drive questions with an energy that might overcome all other roadblocks. There is more to be done with regards to knowledge and its source. There is also more to be done with creativity. These two seemingly divergent topics are inherently related as I discovered partially due to Marletto’s excellent text. 

By mixing disciplines Marletto grants new eyes to old questions. More importantly, she inspires curiosity and demands us to undo some of our preexisting knowledge….a Herculean, and quasi-antiscientific effort. It makes me wonder why we believe – so strongly – that what we know is correct? I admire the courage of this book because it is creative, multi-disciplinary, and insightful. Moreover, Marletto explains complex scientific notions in ways that are accessible to the layperson. She invites all of us, regardless of degree or discipline, to join the journey.

INTERVIEW: Dr. Kimberly Myers

Posted on by OTH

 

Oh, the Humanities (OTH) recently conducted a Q and A session with Dr. Kimberly Myers. Dr. Kimberly R. Myers. Dr. Meyers is Professor of Humanities and Medicine and Distinguished Educator at Penn State College of Medicine, where she designed and co-directs Observation & Interpretation, a required course in art museum-based education for first-year medical students, and where she founded and hosts the Penn State Health Physician Writers Group, the group being a way for doctors to pursue creative writing for publication in medical journals. Dr. Myers also created with photographer Wendy Palmer the 2015 exhibition Edges of Light: Images of Breast Transformation with photographer Wendy Palmer which has toured the U.S. Her publications include the books Breast Cancer Inside Out: Bodies, Biographies & Beliefs (Peter Lang, 2021); Graphic Medicine Manifesto (Penn State University Press, 2015, co-authored with MK Czerwiec, Ian Williams, Susan Merrill Squier, Michael J. Green and Scott T. Smith), Clinical Ethics: A Graphic Medicine Casebook (Penn State University Press, 2022, co-authored with Molly Osborne, Charlotte Wu, and illustrated by Zoe Schein), and Illness in the Academy (Purdue University Press, 2007).  

Clare (OTH): Dr. Myers, I had the pleasure of attending a recent talk that you gave at Trinity College, Dublin on graphic medicine. Your presentation’s theme was, briefly, that the medium of comics can enhance the training and practice of healthcare providers and can be an important source of information and support for patients and caregivers contending with illness. There was some very cogent feedback from the audience. What was the most unexpected question or response from the session — or something else that stood out to you about the event? 

Dr. Myers: Thanks, Clare, for reaching out with these questions. What stood out most for me was that we had such a lively discussion from both sides of the Atlantic—even though here in the U.S., where we’re five to eight hours behind you in Ireland, we began before breakfast! Our meeting was a fine example of the ways graphic medicine—that is, issues of health, illness, and wellbeing conveyed in the form of comics—can so easily open up discussion among people from all walks of life. Comics is a great ice-breaker. One reason for its effectiveness is likely subconscious—that is, comics aren’t threatening because they are associated with childhood. People who view a comic typically assume they’ll “get it.” There’s no pressure to sound erudite when commenting on it and there’s no test to follow, so they feel free to offer their thoughts about what’s going on in the panels.  Further, comics is a democratic medium in that it has the capacity to engage people no matter their understanding of a particular language or their cultural contexts. Pictures and words work together to create understanding and/or questions, and it usually feels natural to invite other people to share our responses when we talk about comics. When we gathered at Trinity, it was interesting to see the plentiful comments in chat that continued throughout our entire spoken discussion. 

 

OTH: In your essay in Graphic Medicine Manifesto (2015) you talk about coming to appreciate comics later than some of your co-contributors—as a child who was a voracious reader you preferred biography and “proper” fiction. Have you encountered a prejudice against adults reading comics amongst doctors and other members of the medical community?

Dr. Myers: As learned professionals, whatever our professions, we probably all initially carry some unconscious bias against comics as a “serious” medium. There’s actually a debate within the graphic medicine community whether we should call what we do “graphic medicine” or “comics.” For some GM folk, the former term lends legitimacy to our work that might otherwise be dismissed as juvenile. Inasmuch comics could seem lightweight to some, it’s wonderful to engage in discussion of a medically-themed comic and witness that skepticism evolve, somewhat magically, into surprise and then conviction that we’re onto something with this comics thing. That’s one of the pleasures of working in this field: it’s just plain fun to experience how comics work as an art form in its own right and also as a catalyst for social engagement. 

To be sure, though, creating comics and readings comics are also very demanding work, as we have to attend to multiple dimensions simultaneously. Just to give you brief insight into the complexity of this process, here’s an overview of how our team created each of the eight comics that comprise Clinical Ethics: A Graphic Medicine Casebook. We created the narrative arc, the essence of what would happen within the story. This includes the kind of characters we wanted (e.g., gender, race, socio-economic status, etc.) and the fine points of the ethical dilemma we were featuring. We consulted with ethics experts to double-check our own training and practice, with patients and caregivers, and with lay readers, including students (our targeted audience) to gauge how effectively we were conveying information and inspiring questions that would lead to invested discussion. The drawing of the comics themselves included a story board, pencil sketches, basic ink drawings, edits, and final inking . . . and there were multiple revisions between each stage of this process. In the verbal sphere, we had to make language concise enough for comics while also ensuring adequate detail and precision to convey the complexity of any situation requiring deliberation multiple stakeholders in the medical-ethics situation we were depicting. It took several months to move each 6- to 8-page comic from idea to publishable art. 

 

OTH: Some academic librarians have had success using unconventional methods in reaching “nontraditional” learners—for instance, Central Methodist University in Missouri has used Pinterest as a library marketing and information literacy tool. Library staff created boards from images of books and videos and found that this form of social media “lends itself very well to sharing information to visual leaners and traditionalists alike.” Are medical comics also suitable for visual learners, and what are some other cohorts who might also find them helpful? 

Dr. Myers: Yes, medical-themed comics are quite useful for visual learners as well as non-native speakers, low-literacy patients and younger people. It’s important, however, to distinguish between graphic medicine and illustrated guides, for instance pictures showing how to use an inhaler for asthma. Graphic medicine is also different from medical illustrations like those one would find in an anatomy textbook and from visual depictions of bioscientific processes like diagrams of neural pathways. Graphic medicine is more expansive and complex than these other genres, not in terms of the knowledge and talent needed to create or understand them, but in terms of their scope. Graphic medicine artifacts attend simultaneously to structural, biological, psychological, and social dimensions (to name a few) of an illness experience. 

 

OTH: Let’s talk about another visual medium. When talking about the 2015 exhibition Edges of Light that you created using photos of you by Wendy Palmer and reflective text by yourself, you say that after receiving a diagnosis of breast cancer, the decision to meet with a photographer and document your pre-surgery body was taken very early on. Why choose photography as a medium and not, for instance, a comics-style illustration? 

Dr. Myers: The short answer, Clare, is that the original motivation for the exhibit was purely personal. Like many women, I wondered how my body would look after mastectomy, and I wondered if, at some point in the future, I might want to remember what my body looked like “before.” I had only a week between diagnosis and my first surgery (lumpectomy), and I acted on that impulse very quickly because I didn’t have time to deliberate. It was only later, after chemotherapy, mastectomy, and surgical reconstruction, that I revisited the photographs that Wendy had taken. We were struck by how many different emotions she had captured, and we thought that other women might find some community—even solace—in seeing someone else’s journey of physical transformation. That’s when we narrowed the 400+ unposed photos to the 30+ photos that constitute the actual exhibit (part of which is reproduced in Breast Cancer Inside Out). After we chose the photos, I wrote the brief verbal reflections, recalling what I was feeling in that moment. I could do this easily because of the remarkable nuance Wendy had captured on film. 

 

OTH: In your book Breast Cancer Inside Out, you bring together essays from patients, practitioners involved in breast cancer treatment, and academics from the health humanities field.

The aim of the project, as you say in the introduction, is to move towards an inclusive health humanities account of breast cancer, one which gives voice to those with lived experience. As an educator, do you feel that the stories of breast cancer patients have particular resonance for the field of medical humanities? And as someone with her own experience of this disease, do you hope that patients who are living with or have lived with breast cancer will read this book?

Dr. Myers: I’ll tackle your second question first. I do hope that people living with breast cancer—the patients and also the family, friends, and healthcare professionals who care for them—find the book meaningful and helpful. I created this particular book because it was what I needed and wanted when I was diagnosed but couldn’t find all in one place: various components of diagnosis and treatment; insights from people who shared my illness; personal perspectives from doctors, nurses, therapists, and other professionals who care for those with breast cancer; wider contexts of scientific, historical, cultural, academic, and artistic significance. Nobel laureate Toni Morrison once said, “If there’s a book that you want to read but it hasn’t been written yet, then you must write it.” Breast Cancer Inside Out is the book I wish I’d had.

I think stories about all illness experiences are valuable, integral in fact, to medical humanities because we’re meaning-making creatures and we make meaning through the stories we tell and those we hear. One thing I discovered with my first book, Illness in the Academy, is that people who have experienced breast cancer have a need and a desire to write and otherwise tell their stories. If I were a medical anthropologist, I would conduct a study on why breast cancer pathographies are so popular and seemingly much more plentiful than first-person accounts of other illness experiences. My conjecture is that it has to do with the fact that the disease affects mostly women. I’m not an essentialist with regard to gender, but I do think women tend to form communities around deeply personal struggles perhaps more often than men do. Sharing stories about breast cancer can certainly be a bonding experience, one that women might imagine men could not as fully, if at all, understand. Whether the impulse grows out of a community or serves to create a community, I believe many people have a desire to help others who are faced with the trauma of a potentially life-threatening illness. Stories in the form of first-person reflections, photographs, comics, visual and other artifacts can create virtual support groups.        

OTH, thanks very much for providing an opportunity to think about what I do from different angles.

OTH Bookshelf: Medical Humanities

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“Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.” – Marie Curie

 

This issue of OTH Bookshelf focuses on the burgeoning topic of medical humanities, a discipline defined by the University of Michigan as “a broad field, encompassing the interface between the science of the health professions and other disciplines, including history, literature, creative writing, performing arts, visual arts and journalism.”

This OTH list of more than 150 open access academic titles includes the book’s author or editor names, title and title remainder, year of publication, publisher, and open access format (PDF, EPUB, MOBI, etc.) Subject headings in the list are taken from WorldCat records or Library of Congress records, if available: if not, original cataloging of subject headings is provided in WorldCat format, for consistency. The DOI (Digital Object Identifier) of the book is given if it is available on the publisher’s website; if not, the URL is provided. The ISBNs listed are for the online version of the book if available, and if more than one online ISBN is available the ISBN for the PDF version has been preferred; if there is not an online or e-book ISBN, the ISBN featured on the publisher’s website is included. The book’s license type (Creative Commons, etc.), terms of use or copyright restrictions are included if these have been provided by the publisher. Those monographs hosted on the National Library of Medicine – National Center for Biotechnology’s Bookshelf which are outputs of Wellcome Trust funding have been made freely available as part of the Wellcome Trust’s open access policy. 

If our readers are aware of any title or publishers that are not included, please feel free to submit them for consideration. (To be included in OTH Bookshelf, a book must be available to read online and/or download for free and must have been assigned an ISBN.) And we welcome your suggestions for topics that might be covered in a future issue of OTH Bookshelf.

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Notes on New Books

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by OTH Staff

Below are selected upcoming and recently published titles related to the History of Medicine and Medical Humanities for the January 2022 issue of OTH.  OTH does not receive any compensation for promoting these books and inclusion on this list is not an endorsement of any views. 

 

Medicine in the Talmud: Natural and Supernatural Therapies between Magic and Science

by  Jason Sion Mokhtarian

“Despite the Talmud being the richest repository of medical remedies in ancient Judaism, this important strain of Jewish thought has been largely ignored—even as the study of ancient medicine has exploded in recent years. In a comprehensive study of this topic, Jason Sion Mokhtarian recuperates this obscure genre of Talmudic text, which has been marginalized in the Jewish tradition since the Middle Ages, to reveal the unexpected depth of the rabbis’ medical knowledge. Medicine in the Talmud argues that these therapies represent a form of rabbinic scientific rationality that relied on human observation and the use of nature while downplaying the role of God and the Torah in health and illness. Drawing from a wide range of both Jewish and Sasanian sources—from the Bible, the Talmud, and Maimonides to texts written in Akkadian, Syriac, and Mandaic, as well as the incantation bowls—Mokhtarian offers rare insight into how the rabbis of late antique Babylonia adapted the medical knowledge of their time to address the needs of their community. In the process, he narrates an untold chapter in the history of ancient medicine.”

Published by the University of California Press, coming May 2022.

 

Insulin – The Crooked Timber

by Kersten T. Hall

From the Author:

“It’s about what technology can – and perhaps more importantly can’t – do for us. When insulin was first used to treat diabetic patients in the early 1920s, newspapers were full of triumphalist headlines about it being a miracle cure for diabetes. Clinicians involved in this work such as the eminent US diabetes specialist Elliott Joslin however knew that it was nothing of the sort. For even as he was likening the power of insulin to save lives with the vision of Ezekiel, the Old Testament prophet who is supposed to have seen a valley of dry bones rise up and be restored to life, Joslin was issuing a stern warning to both doctors and patients about this new discovery.

 ‘Insulin is a remedy which is primarily for the wise and not for the foolish, be they patients or doctors, he warned, before adding ‘Everyone knows it requires brains to live long with diabetes, but to use insulin successfully requires more brains.’

 Joslin had recognised that, while insulin was necessary to live with Type 1 diabetes, it alone was not sufficient. Effective control of the condition required the use of insulin to be accompanied by appropriate behaviour on the part of the patient regarding diet and exercise.

It’s a lesson that I’ve had to learn since my diagnosis but it’s also one that I think has taken on a particular relevance to us all in the past 18 months since the outbreak of the SARS-CoV2 pandemic. It’s very tempting to think that technology alone will do all the heavy lifting in solving the many challenges that we face – such as those of climate change, AI or managing a global viral pandemic. But very often such technological solutions will only be at their most effective if they go hand in hand with appropriate behaviour on our part. This is as true for managing a global viral pandemic through a combination of vaccines and social measures such as wearing masks in public places, as it is for the management of Type 1 diabetes with insulin.

 So as we face the challenges of a global pandemic, AI and climate change, it seems to me that, since I first began writing this book, the story of insulin has lessons for us all – whether or not we happen to be injecting ourselves with it.”

Published by the University of Oxford Press, coming March 2022.

 

Health and Healing in the Early Modern Iberian World: A Gendered Perspective

by Sarah E. Owens and Margaret E. Boyle

From the Publisher:

“Recognizing the variety of health experiences across geographical borders, Health and Healing in the Early Modern Iberian World interrogates the concepts of “health” and “healing” between 1500 and 1800. Through an interdisciplinary approach to medical history, gender history, and the literature and culture of the early modern Atlantic World, this collection of essays points to the ways in which the practice of medicine, the delivery of healthcare, and the experiences of disease and health are gendered.

The contributors explore how the medical profession sought to exert its power over patients, determining standards that impacted conceptions of self and body, and at the same time, how this influence was mediated. Using a range of sources, the essays reveal the multiple and sometimes contradictory ways that early modern health discourse intersected with gender and sexuality, as well as its ties to interconnected ethical, racial, and class-driven concerns. Health and Healing in the Early Modern Iberian World breaks new ground through its systematic focus on gender and sexuality as they relate to the delivery of healthcare, the practice of medicine, and the experiences of health and healing across early modern Spain and colonial Latin America.”

Published by the University of Toronto Press, April 2021.

NLM Announces 2022 History Talks

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via National Library of Medicine (NLM)

This story was originally published by the National Library of Medicine. See the original story here: nlm.nih.gov/news/NLM_Announces_2022_History_Talks.html

The National Library of Medicine (NLM) announces its 2022 History Talks. All talks are free, live-streamed globally, and archived by NIH VideoCasting.

NLM History Talks promote awareness and use of NLM and related historical collections for research, education, and public service in biomedicine, the social sciences, and the humanities. The series also supports the commitment of the NLM to recognize the diversity of its collections—which span ten centuries, encompass a range of digital and physical formats, and originate from nearly every part of the globe—and to foreground the voices of people of color, women, and individuals of a variety of cultural and disciplinary backgrounds who value these collections and use them to advance their research, teaching, and learning.

Interviews with the speakers in this series are published in Circulating Now, the blog of the NLM History of Medicine Division. Explore https://circulatingnow.nlm.nih.gov/tag/nlmhisttalk/  on the blog and stay informed about NLM History Talks on Twitter at #NLMHistTalk.

Complete details of all NLM History Talks are available from the NLM History of Medicine Division website at https://www.nlm.nih.gov/hmd/index.html.

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The National Library of Medicine (NLM) is a leader in research in biomedical informatics and data science and the world’s largest biomedical library. NLM conducts and supports research in methods for recording, storing, retrieving, preserving, and communicating health information. NLM creates resources and tools that are used billions of times each year by millions of people to access and analyze molecular biology, biotechnology, toxicology, environmental health, and health services information. Additional information is available at https://www.nlm.nih.gov.

A Critical Eye Toward the Medical Humanities: Inaugural Public Humanistic Inquiry Lab interrogates race and medicine

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by Laura Meader

This post originally appeared on Colby News on August 26, 2021. View the original story here: https://news.colby.edu/story/a-critical-eye-toward-the-medical-humanities/.  

This fall marks the launch of an important new multidisciplinary research initiative at Colby that draws on the strength of the humanities to confront questions and problems of crucial civic importance. 

The Public Humanistic Inquiry Lab, or PHIL, initiative creates space and resources for a three-year faculty research collaborative that works across disciplines. Members of a PHIL interrogate traditional narratives, forge unexpected connections, and imagine new forms of outward-facing humanistic inquiry.

The lab is the result of a two-year planning effort by Colby’s Humanities Division to elevate the humanities and the cross-disciplinary research of faculty in the humanities, said Adrianna Paliyenko, chair of the Humanities Division who led the effort. “The PHIL is an opportunity to demonstrate the way in which humanistic inquiry remains central to the core of a liberal arts education,” said Pailyenko, Colby’s Arnold Bernhard Professor in Arts and Humanities.

Primary funding for the PHIL comes from the Margaret T. McFadden Fund for Humanistic Inquiry, made possible through a $1-million gift from Trustee Emerita Anne Clarke Wolff ’87 and Benjamin “Ted” E. Wolff III ’86. The endowed fund is named in honor of Provost and Dean of Faculty and Professor of American Studies Margaret McFadden, an accomplished and respected academic leader at the College.

While medical professions have recognized that racial and health inequities are closely linked, the humanities and social sciences point to structural racism’s impact on health outcomes across time and place and offer new ways of thinking about medicine in racialized societies. 

The inaugural PHIL, “Critical Medical Humanities: Perspectives on the Intersection of Race and Medicine,” will be led by Tanya Sheehan, William R. Kenan Jr. Professor of Art, and Jay Sibara, assistant professor of women’s, gender, and sexuality studies. Across her career, Sheehan has worked at the intersection of American art history and medical humanities, with a focus on the study of race and representation. Sibara’s scholarship brings together the fields of critical race and critical disability studies, literature, and the environmental humanities.

With the participation of 12 faculty across the College, the 2021-24 PHIL aims to stimulate campus-wide interest in critical medical humanities, which relies on interdisciplinary analytical tools to interrogate the power structures that have defined medical practices and to reveal the socially constructed, intersectional, and embodied experiences of health and illness. Among its principal activities will be sharing faculty research through the Medical Humanities Colloquium, collaborating with leading scholars around the world, organizing publications, and hosting conferences and other public events. 

According to Principal Investigator Sheehan, “the inaugural PHIL represents a unique opportunity for Colby faculty to share the critical questions they are asking about the relationship between medicine and race, to engage in collaborative research at Colby, and to participate in innovative international partnerships.” So far, Sheehan has been developing partnerships with Princeton University, the Australian Health and Medical Humanities Network, the digital project Visualizing the Virus, and others. She envisions the PHIL will “create opportunities for Colby faculty to publicly lead in the field of medical humanities and support their efforts to promote both scientific advancement and racial justice through their research and teaching.”

While medical professions have recognized that racial and health inequities are closely linked, the humanities and social sciences point to structural racism’s impact on health outcomes across time and place and offer new ways of thinking about medicine in racialized societies. 

“I’m excited to be a part of an initiative that will bring together and support faculty from across many fields engaging in research at the nexus of medicine and race,” said Associate PI Sibara. “For example, by examining the systems of inequity that have historically associated racial difference with disease and linked whiteness to perceptions of physical and social fitness, and by examining the ways in which visual, literary, and performing artists have responded to these inequities, the PHIL’s participants will collectively offer alternative frameworks for understanding the meaning of health, illness, care, and medicine in racialized societies.”

By engaging students in faculty-led research, the PHIL also hopes to prepare the broader Colby community to reflect on race in health experiences and professions. This work will be accomplished through an expansion of Colby’s medical humanities curriculum and the organization of local events. In addition to sponsoring two CARA (Colby Academic Research Assistants) students in 2021-22, Sheehan and Sibara have also begun conversations with Jessica Matzko, who directs pre-health advising through DavisConnects, about developing workshops for Colby students and the Waterville community that address aspects of healthcare and race. Student internships with the PHIL’s international partners are also in the works.  

“As the Covid-19 pandemic continues to devastate communities of color, and as more Americans confront racial injustice,” Sheehan explained, “now is the time for Colby faculty to lead conversations about race and medicine.”