Duke Medical Ethics Journal
The Oeuvre of a Patient: Deriving a Health Humanities Precision Medicine From The Study of Authors
Precision Medicine in both connotation and denotation (“an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person” as described by the Precision Medicine Initiative established during the Obama administration) narrows in on genetics as a key apparatus to attainably remodel the patient encounter under the paradigm that each patient should receive specific care to their specific biopsychosocial composition (US NLM, 2020). Interestingly, genetics and the buzz around genetic editing is not just CRISPR and an alphabet of A, C, G, and T, because genetic editing maintains the code of all 26 letters in its form as a literary analytical methodology. Textual genetics, derived from “genetic criticism” or originally “critique génétique”, allows a different approach to understanding a person with great precision — the close digesting and synthesizing of a writer’s works in all of their iterations, their drafts, letters, that which was kept and that which was removed, and any accompanying texts that depict the experience of the writer in each space and time. In looking to improve care via a turn to the details that make patients so profoundly individual, I suggest the existence of a sub field of Health Humanities Precision Medicine that explores the process of deeply engaging with texts and the specialization in specific authors’ oeuvres to possess the skill of precisely understanding a person’s experience and their health as they depict it. The humanities scholar comes to wield an extremely rare and valuable tool in gaining the sense of knowing a person as deep as their every intention through the intense study and comprehension of authors, and this method of attention would serve as an additional apparatus for effectively implementing the goals of precision medicine into the current healthcare system.
II. Engaging with Literature: A New Kind of Learning for the Healthcare Provider
Before the solidification and expansion of programs designed specifically for the health humanities, several pioneers of the movement for integrating the humanities into healthcare and health education became doctors and literary scholars separately. As a pre-health student, I’ve found that pre-requisites to the MCAT and medical curriculum lead to a broad general understanding of the sciences as they may find future applications. In contrast, in humanities courses I was surprised to find such an extreme degree of specificity in areas of study, not realizing “The Defoe Society” made up of “Daniel Defoe Scholars” was a practice engaged in academia for example. However, I found great value in the attention to one individual this practice could have. Dr. Rita Charon, founder of the Columbia University Narrative Medicine Program, is a Henry James Scholar in addition to being an internist. However, this commitment to a specific writer is not rare, but so normal as to be joked about within Literature communities. Charon explains, “It is a commonplace that readers "have" authors. Ph.D. candidates who have to choose which author to study joke—or seriously come to see—that their author chooses them” (Charon, 2019). As a result, to delve into this field is to make oneself available for an author’s choosing, and for healthcare providers to be made available to this “fate” is an unavoidable outcome of thinking with a kind of precision that isn’t inherent to traditional medical pedagogy.
To “have” an author, it appears necessary to be familiar with their published works, but also to be familiar by contextualizing them in the depth and breadth of the before, after, and around— what was the inspiration, the aim, the style, the genre, who is the intended reader, who is the actual reader, and then how did it contribute to discourse, how did it impact the writer, the field, the world. As a result, there requires an immersion in the time and place of the author, and a tracking of what meaning-making exists in each product as well as each conception. The field of Genetics in literature, Genetic Criticism, is to consider not only the finished products, or the active contributions to the discourse or field, but also to be informed by that which was scrapped, fragments, as stated in Genetic Criticism edited by Ferrer, Deppman, and Groder, “Geneticists find endless richness in what they call the "avant-texte" [before-text]: a critical gathering of a writer's notes, sketches, drafts, manuscripts, typescripts, proofs, and correspondence” (TextualScholarship). The result is an oeuvre, the collection of external memory stores in all of their forms, accessed by one person to try to capture all that encompasses another.
Charon explains of literary scholars’ experience after completing her PhD having been “chosen by” Henry James: “They become amenable to their authors, available to them, permeable to their writing, at home with their taste and sensibilities, gradually accruing their secrets. Some feel that they fall in love with their author. Others learn their authors' exact weaknesses or the places that hurt” (Charon, 2019). Ultimately, Charon states with a firmness as though it is a duty or chief responsibility, like the sanctity to “Do no harm”, that, “They champion them” (Charon, 2019). In taking part in accessing the words a writer has chosen to leave, Charon feels that “James lives his emotional life with or through me, his reader” and as a result, she faces the decision of “whether I want to reciprocate by living my emotional life with or through him”, to champion them. For a healthcare provider to embark on this relationship means to learn, or practice, what it feels like to be amenable and permeable, to hold secrets, to champion another person, and to decide to live with and through others: all acts that then integrate into their medical practice.
“to ask patients ‘what would you like me to know’ becomes analogous to demanding of an author, ‘what have you left, or given me, to know?’”
III. Becoming Expert of an Author and Health— in Practice
Charon provides very revealing demonstrations of the profound ways her perspective has been influenced by her study of Henry James. She notes, “I am not alone among readers of this journal to have pilgrimaged to Rye, to the Cambridge Cemetery, to Cheyne Walk, to Washington Place…But such efforts at approximations do not satisfy the urge to walk through the snowfield in the footsteps of the writer who walked through it before us” (Charon, 2019). She uses this feeling of treading in the footsteps found from the writer who left them there to reveal the way she can learn of people’s lives, to feel alongside them, and to notice where they are when they were found. For Charon to ask her patients, “what would you like me to know?” Becomes analogous to demanding of an author, “what have you left, or given me, to know?”.
Another prominent example of using the study of an author to change medical practice is seen in the work of Dr. Victoria Sweet, who is a leader of the “slow medicine movement” and an expert of Hildegard of Bingen. Slow medicine, as she conceives of it, recognizes, “Good medicine takes more than amazing technology; it takes time– time to respond to bodies as well as data, time to arrive at the right diagnosis and the right treatment” (Sweet, 2018). Sweet was a physician dissatisfied by the environment in which she practiced, feeling as though there was a fundamental rift between the hyper-structured care she could give and the raw, organic care that was needed to be received. Sweet turned to a curiosity with the Middle Ages and its role in providing a foundation from which these structures upon structures could emerge, calling it the “invisible matrix, the micro tubular structure, that underlies Western culture” (Sweet, 2017). What, or who, she found elucidated a crucial pivotal point of a different path health care could have taken, one that could be returned to still; Sweet learned of Hildegard of Bingen, a mystic, nun, and author of medical text in the twelfth-century. Having been chosen by her author, she completed a Master’s and Doctoral degree in the history of medieval medicine and was led with Bingen as her muse to integrate a slow, grassroots, holistic approach to her practice, and a way to transform how she cared for patients (Sweet, 2017). Through Bingen’s works, she began to choose to see her position in medicine as a gardener tending to growing plants, rather than a mechanic fixing a machine, fundamentally modifying her medicine to one of immensely responsive, unique care, like that of precision medicine. Sweet finds, “underneath our scientific modern medicine [is] an earlier way of understanding the body—erased, to be sure, just a faint shadow on our consciousness, but active in our thoughts and desires, nonetheless”, a precision in the depths of our bodies, experiences, and symptoms, that come from seeing it in another (Sweet, 2018).
In addition, Dr. Richard Martinez, who is a physician and Professor of bioethics, humanities, and psychiatry is an expert on Walker Percy. In the book entitled The Last Physician: Walker Percy and the Moral Life of Medicine, the contributors all express how the works of Percy have impacted how they practice medicine, of “the necessity for human connection in the midst of scientific and technological paradigms that distance practitioner from patient” and concluded that practicing medicine himself in turn helped Percy as a novelist, where “keen observation and sustained searching for answers are to be found in all of his fiction” (Martinez, 1999). Martinez, who is a Percy scholar, feels as though his work leaves him in a position where he will “turn to Walker Percy’s stories, essays, and life for signs, for messages. But with Walker Percy, one soon discovers that although the messages left along the path are generous, intelligent, and well crafted, to decipher hidden meanings and intentions requires a willingness to struggle” (Martinez, 1999). He digs into the life of Percy, having tried to meet him in the last year of his life in 1990, having studied him and his work for over two decades, knowing it is his habit that with friends, they will, “in Covington, discuss and reflect, listen and watch the quiet of the Bogue Falaya River, and smell the honeysuckle” as a result of the close kept record of his life (Martinez, 1999).
As a final demonstration, Joanne Trautmann Banks, is credited with making a name for the field of literature and medicine, and is the principle expert and primary editor of the six-volume collection of the Letters of Virginia Woolf. The late Trautmann Banks was a professor to medical students at Pennsylvania State University, and came to know Woolf and her dense network through the sacred mediating of the publication of her letters. She wrote Healing Arts in Dialogue: Medicine and Literature about the transformative first meeting in 1975 of nine of the most world-renowned experts in literature, within medicine, and how this could inform the future. These were physicians and simultaneously D.H. Lawrence, Williams Carlos Williams, and Boswell scholars, fiction writers, poets, and critics (Banks, 1983). Alongside these peers, Trautmann Banks became a protector of Woolf, a heralder of all that she means to the literary canon, from experts to high school curriculum and pop culture. She wrote, “I promised to publish the important letters that were certain to come to us in the next few years at attics were cleaned and lives put in order. With this article we fulfill our promise” (Banks, 1984), where Trautmann Banks becomes a healthcare provider at its root, in baring the outcome, the diagnosis, in telling the family what is going on at its deepest, and she knows only through being in the attic needing cleaning what Woolf wanted to be known.
While these function as case studies, and can in no means serve as a generalization of the whole, they function as meaningful, phenomenological evidence, of the capacity for studying authors and their respective oeuvres as a transformative methodology to precision in medicine. When snowy footprints, gardening, honeysuckle, and dusty attics become symptoms, embodied, and important to who a person is and how they live, that becomes a detail needed for the unique treatment of an individual. To know how an author spends their days is to think of health by the contemporary theory of the social determinants of health, to recognize that the patient deserves an individual, specified care regimen just as much for the unique DNA of their external lives as for the DNA of their internal ones.
IV. The Contribution of a Health Humanities-take on Precision Medicine: Expert of a Patient?
In order to suggest a Health Humanities Precision Medicine, to assert the study of authors as like analyzing genetic code, the outcomes are needed. After these physicians were chosen by an author, how does that translate back into the exam room, in a practical, feasible way? In the case of Dr. Sweet, she writes that she “found a fuller way to relate to her patients”. Through Bingen, Sweet couldn’t unsee the comparison of “contemporary hospitals to palimpsests, manuscripts that have been overwritten with new texts, but still contain traces of the originals” and as a container of the past, she committed to “bring some of these premodern medical practices out of the shadows, out of the recesses of our thoughts and desires, and to renew them for our daily use” (Sweet, 2018). What she finds is that patients may be more thoroughly healed not by mending an ailment on the surface but a care for their being, and the proposal of her Ecomedicine Unit (ECU) explained: “What would make the ECU “ecomedical” would be that natural medicaments would be preferred to synthetic ones, and organic food, fresh air, sunlight privileged over prepared food, artificial light, and air conditioning” (Sweet, 2018). She found success in cost-efficiency and care quality in developing this kind of slow Bingen care, where people ate the precise food of their lives, and healed in the precise needed spaces for their lives rather than the typical hospital standard.
In the metaphor of genetics, Charon notes that studying an author might quite literally change the physiology of the reader — her own life literally changed, as if knowing James could leave her very DNA methylated: “Akin to the biological notion of epigenetics, in which external conditions either permit or prohibit actual genes from acting, perhaps the emotional underground of a creative work might ‘turn on’ or ‘turn off’ some powerful processes in the reader” (Charon, 2019). Doctors may literally turn on new capacities through their engagement with literature, and she finds that they may be better “equipped” to respond to texts, and in turn narratives and lives around them. Charon in her practice has found that “In the process, perhaps, the reader intensifies his or her own awareness of being conscious—awakening to self, making more capacious the volume of being” and she can bring this conscious awakening to all of the stories and experiences she has and bares witness to, granting both herself and her patient a more capacious space for being. She welcomes her patients to explore space and their stories, aware of all of it in its wholeness. This can’t not be advantageous for precision medicine, as Charon knows about patients’ feelings, family histories, fears, curiosities, developments and declines. She can then embark on a partnership with each patient’s unique oeuvre, as though each patient was a Henry James, to design a plan of healthcare that is a part of their oeuvre.
"Extending this, the United States is in the midst of a “doctor shortage” and COVID-19 has only further elucidated the limits of doctor accessibility, resources, and infrastructure."
V. Necessary Considerations of Author and Patient Representation
Despite the potential room for medical benefits that could emerge from this kind of epistemic pursuit, to invest in the learning of a person through their writing, it is a suggestion with crucial limitations that require acknowledgment. For example, quite simply, becoming an expert on an author requires many years that take attention away from caring for patients, in a medical training system that is already very time-intensive, and expensive. Extending this, the United States is in the midst of a “doctor shortage” and COVID-19 has only further elucidated the limits of doctor accessibility, resources, and infrastructure. While “slow medicine” is designed to combat the fact that doctors spend increasingly less time in direct contact with patients, it remains a reality within the current framework, and this may not lend itself to adopting a health humanities precision medicine that is contingent upon enough time and attention for success.
Accessibility is not only constrained by time, but the current literature canon that has the power to open up physicians better to connection and precise human understanding is overwhelmingly Western, and at least white, male, cisgender, or of high socioeconomic status, if not some combination of all of them. This means if a physician becomes more accessible equipped with the skill to champion others, like their author, it will be inherently tied to who is like their author. Studies reveal that patients’ health benefits from representation, and this is hindered in the humanities as it is in medicine, and the very canon that can act as a tool is only as effective as its inclusion of people and works to understand. This is therefore a call for more representation in the physicians who hope to treat with precision medicine, but also a call to academia, publication companies, and the several layers of power structures that turn an author into a “classic” writer and construct the archetype of the author of whom to be an expert. This requires the large consideration of histories that weren’t granted a place in history, and making sure that stories can get told, not to be lost like those of marginalized communities throughout history. How does one become an expert on an author who isn’t known to be an author? In an ideal medical pedagogy, in consideration of cultural and structural competencies, of social determinants of health, of empathy and active listening, an expansive range of authors could serve as a resource to come to understand people deeply, and precisely, whether they resemble the physician or not.
These considerations also invite the acknowledgement of flaws in the magnitude of credit given to narrative, and whether patients would like healthcare that uses a humanities approach as precision medicine. Unni Wikan explains “people bleed stories, but academics gather narratives” (Woods, 2011). Ultimately, in an effort to better connect, this pursuit could create a kind of distancing, and requires buy-in from patients who see this as a kind of humanizing of the physician rather than a deifying or elitism. If the pursuit functions merely as a kind of academic leverage, its benefits are lost.
In seeing health as a biopsychosocial phenomenon, precision medicine should not take a solely inward-out approach, and rather should also seek to work outward-in at the same time to take “into account individual variability in genes, environment, and lifestyle for each person” as the definition outlines as the goal. Health humanities scholars have demonstrated extreme alterations in their practice of medicine following engagement with literature and the trend of specialization on the topic of a specific author, a proposed methodology for participating in precision medicine. In addition to genetic methods to understand a patient’s life, textual or literary genetic methods should complement them. While there are drawbacks to this effort, as with any, it has the capability to broaden and deepen the way healthcare providers interact with patients who they entrust to “champion them”. By gaining the skills to follow a writer and be immersed in their thoughts so as to be able to consider oneself as knowledgeable as a friend, when a patient requests this skill, it can be practiced and ready. Despite a need for a literary canon that represents all those who healthcare reaches, and even those it doesn’t, literature in theory has the potential to make a diagnosis and a treatment a part of each person’s collection of works, their oeuvre.
Review Editor: Min Ju Lee
Design Editor: Shanzeh Sheikh
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