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Long Read: What Does it Mean to Listen, and How Can it Be Learned?

4 Apr, 17 | by amcfarlane

In the first of our “Long Read” series, Anders Juhl Rasmussen interviews Dr Rishi Goyal, Director of Medicine, Literature and Society and Associate Professor of Medicine at Columbia University Medical Centre, and an Attending Physician in the Emergency Department at Columbia University. Goyal is currently a Visiting Professor at the University of Southern Denmark in Odense, and Rasmussen gives some observations from a recent teaching session at Odense University Hospital before interviewing Goyal on the subject of narrative medicine.

Odense University Hospital, January 11, 2017

As visiting scholar in the optional Master’s degree course “Narrative Medicine and Language” Rishi Goyal entered the classroom with physical copies of the shorter texts that he had uploaded before class to the students’ digital BlackBoard. He didn’t use a computer himself, and he asked the students to do the same and sit as close to him as possible. If the tables could have been rearranged in such a way that everyone could face each other, he would have preferred that.

The teaching session opened with introductions during which everyone said their names and their professions, illuminating the different degree programs coming together in the classroom: nurse, midwife, physiotherapist and occupational therapist. On the classroom’s Blackboard, Rishi Goyal wrote the following keywords while explaining the central ideas that inspire his teaching at the interface of medicine and literature at Columbia University:

  • Uncertainty/doubt/ambiguity
  • Human complexity/variability
  • Resilience
  • Creativity
  • Patient perspective/point of view
  • Empathy

The first text discussed was by Audre Lorde. Lorde was suffering from breast cancer, and she addressed the ongoing impact of the illness in The Cancer Journals (1980). The first sections of the text were read aloud by a couple of students and then discussed in detail according to the principles of ‘close reading’ with a focus on style, narration and genre in relation to content.  A core hypothesis of narrative medicine is that the competence of attentive listening to patients’ stories is strengthened through training in close reading.

Rishi Goyal concluded that serious somatic illness affects not only the body, but also the mind. It disrupts a person’s sense of being a unified self as described for example by the sociologist Arthur Frank in The Wounded Storyteller (1995). Serious illness opens a rupture in the continuity of the self, a before-illness self and an after-illness self. Medicine and science work through generalities, but lives are lived as singularities. Medicine’s statistical evidence base cannot be applied to the individual life context without suppressing the singularity of every human being. And yet many patients ask for the certainty seemingly promised by statistics.

Rishi Goyal reminded the students that as human beings we never know exactly how the suffering of another feels. In the terms of the philosopher Emmanuel Levinas, the other person’s subjective perspective is never as knowable as one’s own is. The Other always lies beyond the comprehension of the Self. However, narrative medicine can build bridges between these differences and divisions. Audre Lorde’s insight was that suffering, which is often silenced, must be transformed into language before it can be acted upon or alleviated. After the classroom discussion, Rishi Goyal formulated a writing prompt. The students should write, in 7 minutes, about a moment where they were silenced or others around them were silenced. He told them not to spend too much time on thinking, because the answers weren’t meant to be anything beyond the moment. Finally, four or five of the answers were read aloud and discussed with engagement.

Then a short story by Lucia Berlin from her posthumous collection, A Manual for Cleaning Women (2015), was read aloud. Berlin wrote what might be called ‘self-fiction’ or semi-autobiographical stories that focused on families, working-class lives and the ravages of alcoholism.  In the text, the narrator questions whether to write about her own experiences from the first- or third-person point of view. Illness memoirs are almost always written in first person, but when you apply a third person point of view you create a distance between author and narrator and thereby capture the reader’s interest in otherwise trivial everyday life.

The students discussed the text with remarkable curiosity in the classroom, and Rishi Goyal demonstrated the difference in point of view when he formulated the next writing prompt: The students should write, again for 7 minutes, about themselves in the third person. Several of the students said afterwards that they had never before written about themselves in the third person, and that they were astonished at how the elementary change in point of view opened their eyes on themselves completely. Rishi Goyal mentioned the professor of anthropology and occupational therapist, Cheryl Mattingly, as a scholar who has scrutinized the potential of ‘narrative therapy’.

The third part of the session was a close reading of a few pages from Maggie Nelson’s recent work of ‘autotheory’, The Argonauts (2015). Here, language is interpreted as something that can be destructive or potentially dangerous, because language in a philosophical perspective doesn’t fit precisely with the singular, non-verbal experience. Introducing a completely different take on language than in the previous texts about illness memoir and point of view, Rishi Goyal widened the scope of human experiences and insight.

Even though he didn’t find time to discuss the fourth text, by Sarah Manguso, the students got the sense of a plurality of voices in the texts – and in the classroom. The students reflected on each others’ stories and their own life story through close reading, engaged discussion, and creative writing, and they practiced an anti-hierarchical and relational learning process in preparation for their future practice. Narrative medicine acknowledges, confronts and challenges divisions of race, gender, age and social class, while promoting a more humane medicine based on an approach that prioritizes the understanding of the other’s (patient’s or colleague’s) subjective point of view. Attentive listening – to both words and silences – leads to understanding and to better care.

The Royal Library, Copenhagen, January 12, 2017

Anders Juhl Rasmussen: Let me begin with the basic question; what is ‘narrative medicine’ from your point of view?

Rishi Goyal: Fair enough, I think this is a critical question, and it’s not clear to everybody – even sometimes the practitioners of it. In the most basic sense, I would say that it’s better thought of as a series of practices or a stance. It’s medicine sustained with training in narrative and close reading skills particularly to enable health care practitioners to listen to patients’ stories, witness their suffering, and then be called to act on their behalf.

Narrative medicine is mediated through the three movements of attention, representation and affiliation. Attention refers to all the work that goes into truly listening to a patient’s story of illness; the second movement, representation, is that of writing; and the third and final movement, affiliation, is when health care practitioners and patients form an ethical relationship that is also a call for action. But interestingly, I think, narrative medicine is one aspect of a larger trend that we might call the medical humanities or critical health studies.

Critical health studies engage with medicine and biomedicine as a cultural product; in particular, it brings the political – emphasizing the anti-ideological stance of the humanities – to medicine. Narrative medicine is the anti-hierarchical classroom that is filled with diverse voices. It recognizes disease as a socio-cultural phenomenon as well as a biomedical one and approaches medicine through a critique of ideology, gender and race-based assumptions with an appreciation of the constructive dimensions of language. One simple purpose I find that the medical humanities can provide, is to denaturalize the biomedical sciences without, of course, diminishing our power to effect real change in the physical and mental world of our patients.

AJR: Does narrative medicine fundamentally alter, or rather complement medicine?

RG: I think it’s definitely meant as a complement, and I would even say medicine properly practiced doesn’t need to have the term narrative in it. All medicine should by definition be narrative medicine in the sense that narrative medicine prioritizes the patient’s voice, story and perspective, and attends to the meaning that the patient develops.

AJR: So it’s both a complement, and it does alter medicine?

RG: You could say that it reinvigorates medicine, and that it’s meant to be a counter to the very strong technologizing influences in modern biomedicine in which diagnostic tests like blood tests or CT-scans take away from the centrality of the patients’ narrative. But in my view, again, all medicine is narrative medicine.

AJR: How is narrative medicine related to the recent emphasis on patient-centered care?

RG: There are a few terms that have come up in the last 10-15 years, partly, I think, in relationship to, or as a reaction to what’s called evidence-based medicine: the importance of statistical analysis and particular kinds of knowledge. A version of patient-centred medicine has also been called shared decision-making, which is a strong reaction to the paternalism of the medical field that engenders a direct hierarchy between physician and patient. Patient-centred medicine is meant to re-centre our practice on the patient and their autonomy. I don’t know if it’s the case in Denmark, but in the United States there is a lot of interest in the individual genomics and genetic information and its expression. We’re calling that personalized medicine. And the idea is that we can actually use insights from individual DNA to effect both treatment and diagnostic work in medicine. In a certain interesting way, this personalized medicine has more in common with narrative medicine than it has with an earlier form of biomedicine. If you think about it, narrative medicine focuses on the particular contingent or the local or the unique as does personalized medicine. Generally biomedical sciences are interested in the generalities and categories, whereas narrative medicine and medical humanities privilege particular individual narratives, and in a certain kind of way personalized medicine is more similar to that because it’s treating each patient as an individual, particular locus.

AJR: Your department is different from Rita Charon’s department at Columbia, right? Would you describe the differences between the two departments?

RG: Certainly. Rita Charon’s program is a program in narrative medicine, and it’s groundbreaking without a doubt. It involves teaching at the medical school level as well as offering a Master of Science in Narrative Medicine. Students there are either mid-career health care workers, recent undergraduates, writers who are trying to find meaning in their own work, or academics. I direct an interdisciplinary undergraduate program called “Medicine, Literature, and Society”. We emphasize deep language learning, training in a social science discipline and study in comparative literature. All of the seemingly disparate disciplinary imperatives are united by a focus on health and disease. The course of study is four years, the students take 13 classes, they do reading in at least one foreign language, and we have classes on everything from race and gender to health care ideology, to public health. All of the students are looking at medicine as a cultural product. I find medicine and biomedicine fascinating, and sometimes we get overly caught up in the critique of biomedicine, but in fact organ transplantion or the genetic treatment of tumors are incredible life-changing technologies. I’m fascinated by how great fiction is able to find a powerful form of expression for new changing ways of life. The world today is changed deeply by the fact that gender and sexuality is something we can influence at the biological level. Our entire social structures are changing rapidly. I try to educate students to recognize and understand this and write about it.

AJR: In your answer here I can hear the constructivism in your stance towards medicine…

EG: Yes, but what makes it a little bit different is that I deal with flesh and blood problems every day at work as an emergency room physician. Therefore I can’t be too glib with my constructivism. I recognize without a doubt that some people die, some people live, that medical knowledge has progressed, and it has advanced, and that is a good thing.

AJR: Is there a difference between ‘narrative medicine’ at Columbia and ‘narration in medicine’ as described in your article for the Living Handbook of Narratology? You said yesterday to me that there is an ongoing fight over the term ‘narrative medicine’.

RG: There are probably ways in which narrative medicine is sometimes used throughout the country and the world that possibly is different from what we think it should be. However, I think a healthy debate about the terms is certainly important. The other thing I was suggesting was that this field of medical humanities or the introduction of the humanities into medicine has taken place in many different settings, and people are calling it a lot of different things. Sometimes they call it health humanities, sometimes they call it critical health studies, sometimes just medicine and literature; often people are working with the same set of principles and concepts, but there is a bit of a war about the term.

The principles of narrative medicine

AJR: Now then, let’s continue to the central concepts of narrative medicine. As you would easily recognize, I have structured my questions with inspiration from the recently co-authored book from Columbia, The Principles and Practice of Narrative Medicine (2017). First of all, how would you explain the role of intersubjectivity in narrative medicine?

RG: So, intersubjectivity is definitely a complicated term that has multiple different genealogies in philosophy and in psychology. The way I think about it is, that it refers to a shared worldview or a shared understanding of an event or experience. In its most important sense subjectivity is intersubjectivity. There is no subject without an interlocutor or an other or a witness or a listener. So subjectivity is developed in the cauldron of intersubjectivity.

AJR: Good, then let me be more concrete. How is it possible to fully understand and be a part of the patient’s story of illness? Can a health care professional ever be too emotionally involved? Or how does one balance empathy with professional distance?

RG: These questions definitely come up. I certainly think that we need to have a stance of, what one of my colleagues (Sayantani DasGupta) calls, narrative humility, which is a kind of humility in front of the patient, particularly recognizing that the story of their illness is first and foremost their story. However, to abandon them to their own story would be unacceptable, and it would go against the whole principle of medicine and medical practice. So in a way, we co-author their illness narrative in the process of getting to know them, giving them space to voice their concerns, making them feel comfortable enough to be able to tell their story, to feel that they are being helped and taken care of. In terms of the idea of too much empathy or distance, I’ve always subscribed to the idea that you should treat your patients like you would want your family members to be treated. So, I don’t really feel there is such a thing as too much empathy or too much compassion. Curiosity, which is a term we didn’t bring up in class yesterday, is critical to narrative medicine, you simply have to be interested in your patient. Anatole Broyard, who was a New York Times journalist, died of prostate cancer, but before he died, he wrote a wonderful volume of essays called Intoxicated by My Illness (1992). One of his essays is called “The Patient Examines the Doctor”, and in it he says: I want to be interesting to my doctor, I want to be like a character in a novel, I want him or her to read me and to be enthralled by me. There is no question of distance here. In fact, it’s the opposite, and I think that’s important for medical practice.

AJR: Have you never experienced in your own practice as a doctor that you became too involved in your patients’ sufferings, and that it affected you negatively so you couldn’t help them properly?

RG: I don’t think so. I do think that the patient’s pain, their suffering and their death, influence and affect us, sometimes obviously and consciously, and sometimes unconsciously. Unfortunately, as an emergency physician I encounter death frequently, and it’s hard for me to predict, which patients affect me the most, but I’m certain that I’m taking in a lot of pain. I work and I teach medical residents, and often I will make them write, or I will give them the opportunity to write especially after particularly traumatic or emotional events in the emergency room. It’s incredible how that allows them to make sense of an otherwise senseless event. I think ultimately, death is senseless; there is no reason for it. And as physicians we have to understand and in a certain way accept death with some kind of stoic resignation. Most of us are still in a battle with death.

AJR: Do you use writing yourself to create distance towards traumatizing experiences?

RG: Yes, when I have time. I’m not like the family physician and poet William Carlos Williams who would write in between patients, though it’s incredible. I certainly use writing as a way of – like you said – getting some distance from the immediacy of the event and therefore being able to understand it and make some sense of it or at least put it into a context.

AJR: On an abstract level I could ask, if you understand your own subjectivity through the meeting with your patients in the emergency room?

RG: What I find true is that we as practitioners don’t recognize how much these patients, all of them, affect us. And the act of writing can sometimes release that and help us understand how much emotional baggage we are carrying.

AJR: I understand that learning to be an attentive listener might be the most important feature of narrative medicine. Yesterday, you asked the students, partly rhetorically, the question: what does it mean to listen? Now, I will ask the same question to you.

RG: This is an interesting moment, because it speaks to, if not the impoverishment, then I would say the inadequacy of language to reflect or represent what we mean by true listening. In a certain way, I think we need a language that is more resonant, that has more extension, that has more timbre, to understand these various kinds of listening from the biological hearing all the way to some cognitive activity that involves both the intellect and the emotions. From a practical perspective, listening means being present, it means to some degree creating the space in yourself, to receive the other person’s story, it means being engaged, being curious and being involved. I think it requires quiet, and that is a very complex problem for the emergency room, which is a space usually full of sound and fury, and so finding a way to quiet the external and your own internal environment is critical to listening well.

AJR: You have written the aforementioned article “Narration in Medicine” in the Living Handbook of Narratology (2013). Could you repeat to me; what are the core narrative concepts of narrative medicine?

RG: Sure, I’ve been quite influenced by classical narratology, from Percy Lubbock’s The Craft of Fiction (1921) to structuralist and post-structuralist accounts like Gérard Genette’s Narrative Discourse (1980), which focus on specific features of interest in the novel; mood, order, duration, frequency and voice. I think what narratology does is that it analyzes and gives us concepts for things that would otherwise be unnoticed, that can fly under the radar, we would say, and yet these are key features of all narratives; it’s how we make meaning of our world. As a physician, I must admit that there is a real world, and we can’t pretend there isn’t, but as a thinker and literary scholar I often approach narrative as something that constructs reality. There is not one set of frameworks that I privilege over another, but when I teach I certainly give attention to perspective, point of view, and genre. And genre in particular for medical students is fascinating, because people can recognize how genres create certain kinds of outcomes. In a way, the genre determines the story; in a detective story only certain things are possible and those things are different from what’s possible in a romance. If the patient’s narrative is restricted to certain genres, only certain stories can be told. Breast cancer narratives, for example, are often stories of survival; what happens to all the patients, then, that die of metastatic stage IV breast cancer? Their stories remain lost or unhearable.

AJR: Would it be true to argue that the deep narrative interest is defining for narrative medicine in contrast to medical humanities?

RG: I think, that’s true. Narrative medicine is, as I said, part of a larger concept, which might be the interaction of literary or humanities studies with medicine and culture. One thing about narrative medicine, you have to understand, is that narrative medicine is meant as a technology to train health care practitioners to better listen to and act on behalf of patients.

AJR: So there’s a very close relationship between how to listen to a patient and how the formalist concepts in narratology are applied?

RG: That is properly one of the primary hypotheses in narrative medicine. That the ability to read a book, a poem, or a short story is similar to the act of listening well and by training in the one, reading and writing, you can improve the other, listening and acting.

AJR: A few in the field of medical humanities have formulated a critique of the strong emphasis on narrative, formalist concepts in narrative medicine. What is your answer to this critique?

RG: I don’t have too much of an answer to it. The formalist tendencies of narratologists have been critiqued by post-structuralists and post-modernists. I think it’s more like a recipe than a roadmap.

AJR: You don’t find the aforementioned critique a severe critique of narrative medicine?

RG: Not particularly. The bigger question to me is: does the practice of reading and writing improve your practice as a physician? That’s the question. Personally I think so, but we are certainly in the process of trying to collect more evidence, to design more trials, to convince medical schools and funding bodies to support this kind of work.

AJR: We will return to this later. Now, Rita Charon calls close reading ‘the signature method’ of narrative medicine. Does narrative medicine have its own version of close reading?

RG: No, it’s meant to be similar to the close reading of literary studies. It’s basically textual analysis and interpretation of isolated passages with bracketing of everything outside the text. Close reading is aligned with symptomatic reading, which, I was thinking today, is even more aligned with medicine. The text is symptomatic of something else, and that is similar to the way the physicians encounter the body and the patient. You recognize symptoms, and you’re supposed to ‘read’ the interior meaning or model behind those symptoms. It’s a novel version of exterior versus interior. Close reading techniques are in this sense very productive.

AJR: So close reading of shorter texts as we do it in literary studies, is the best way to teach the principles of narrative medicine?

RG: The same textual practices that the literary scholar would apply to the text, is what the physician or healthcare worker in training will apply to the text. Today we are having a discussion of the value of close reading in humanities. Both surface reading and distant reading have come up as alternatives to close reading in the recent years, but they are difficult to practice, if you are a literary scholar who likes the particular in the text.

AJR: Then I would like to ask, even though you might have given an answer already, what do literary scholars have to offer students of the health sciences?

RG: Everything! The question is, what do we think the humanities are for? On the one hand we think of close reading as a technical skill. To me, it really is more a stance of the humanities that the literary scholar brings to narrative medicine, which is to question the assumptions of medicine that assume a false naturalization or a false nature, I would say. You know, the one thing medicine is not – and practitioners of medicine are not always aware of or able to understand this – is that each act of medicine is only provisional. We are in a moment of time, and perhaps someone thinks that we are heading towards complete knowledge, though I doubt that will happen, I think rather that most medicine is temporary in the sense that something was superseded, and it’s important for people to recognize that this is not the only way or the given way.

AJR: Both you and Rita Charon are educated doctors and literary scholars. Do you think it’s necessary to have a double education to teach close reading in health sciences?

RG: It’s not realistic to expect that people should spend that much time on their training and school. Though, I do have a long-term vision of developing a Ph.D. Program in which students combine medical sciences and humanities. Experience of death and illness is everyone’s lot, unfortunately. From that perspective, the literary scholar has to come as a literary scholar or a humanist. I think narrative medicine is also particularly oriented to literary studies, because it makes the work matter again. In the humanities, we often ask, why are we doing this, what is this for, and it can be frustrating not to have an answer! I know that it’s easier for my students to understand literary studies through the lens of the body and how disease and health affect them.

AJR: So awareness of mortality and disease in literary reading with medical students can possibly contribute to literary studies as such?

RG: Absolutely. I think literary studies needs to understand what it’s for. I don’t think it’s enough to say, well I’m going to publish another scholarly edition of, let’s say, George Eliot’s novel Middlemarch (1872), even though those are valuable and important; I think we need to ask ourselves, in what way does the practice of reading and writing impinge on the world of action and activity in society?

AJR: Does that mean that scholars who teach narrative medicine could help literary students – and scholars – to become better readers?

RG: That would be interesting. I don’t know if I have ever experienced that. Normally it’s the other way around.

AJR: What kind of texts are your favorites, when you teach close reading?

RG: It’s a complex question for me, because one of my personal complications with narrative medicine is the shortness of texts. I am trained in the humanities to read for completeness. If you are going to read a D.H. Lawrence poem, you read all of his poems, and if you read a Victorian novel, you read the whole novel. I’m not sure if a piece of the text is representative of the whole. However that aside, I try to pick texts that have a plurality of voices; by that I mean across time, across gender, across race, across age. I don’t generally focus on it, but it’s there so that the students are exposed to the different voices, because I take very seriously George Eliot’s description of the reason we read. She says, “The greatest benefit we owe the artist, whether painter, poet, or novelist, is the extension of our sympathies.” By choosing these diverse voices, we extend our sympathies even more. In a way, the novel is a kind of virtual reality device for us to be able to enter into another’s mind. So I like writing that has a complex literary language, that is very imagistic, I often like meta-fictional texts, and I also like texts that develop a fully-voiced consciousness.

AJR: Is your insistence on a plurality of voices in the texts related to narrative medicine’s vision of social justice in healthcare?

RG: I think it’s central to any of the approaches in the humanities. One of the goals in narrative medicine is to provide equity in care. Certainly in the United States, we can see that there are health outcomes that are radically different based on race and gender, and those are not biologically mediated, they are culturally mediated. We need to figure out ways to overcome those health disperses.

AJR: You have been in Denmark several times and know about our welfare state. Do you think we have similar divisions here that might be overcome by narrative medicine?

RG: There are two ways, I would think about this. On the one hand, I think there is a gender divide in how people use health care in this country. My sense is that women are more likely to see a physician, and men are less likely, and that is going to have an effect on the health outcome, I think. That difference may be explained by biological reasons, but I think it’s also a matter of cultural differences. On the other hand we live in a world with mass migration, and the Danes have to confront a population of people that are on the outskirts of the margins and don’t have the same access to care. In a socially just world, their economic or citizen status should not affect their health outcomes.

AJR: Right, let me return one last time to the question of reading. In academia, we have ‘close reading’ and ‘creative writing’. Can you imagine a term like ‘creative reading’?

RG: That makes me think of Roland Barthes’s term of the ‘readerly’ text and the ‘writerly’ text. For him the readerly text is the classic 19th-century novel that has a strong central focus and voice. The writerly text, which Barthes is more excited about, is the post-modern text that is co-created by the reader and the writer. In a way, that writerly text concept resonates very well with narrative medicine. The patients’ narratives are co-authored between the patient and the physician. There might be some way to think of Barthes’s writerly text and co-created narratives – and that might be a kind of creative reading.

AJR: Why then is creative writing, and creativity as such, so important for medical – and human – understanding?

RG: There is something that happens in the act of representation, in the act of writing, that I think is central to why narrative medicine has an effect. And I’m not sure if I can give you the right answer to this. When I was teaching yesterday, what the students found fascinating was writing about themselves in the third person. They suggested that by doing that they were able to confront complex emotional situations in a rational way. On the one hand the writing act allows that to happen, but it seems to be much more than that. Creativity is at the centre of so many human activities, and that freedom to be creative is important. In the sciences and in medicine particularly, there isn’t enough space for that. Creative writing is a moment of freedom that allows these young students to say something indirect. It’s sometimes hard to say something in the face of a person, whereas looking at it from a different degree or through a fictional lens, allows people to confront their emotional responses better.

AJR: Would you agree if I said that the question of creativity in itself is a symptom of a civilized and technologized world that has lost the immediate contact with creativity as something elementary in our existence as human beings?

RG: That is a very profound thought. Maybe you are right. There is a way in which we all are overly sedimented by civilization. Sigmund Freud would say that civilization only happened because we repressed a certain set of primary impulses and ideas – and in a way creativity may have been repressed to allow us to be civilized.

AJR: You have two young children, and I have a little child. To children the creative impulse wouldn’t be anything to question. Why is it different for us?

RG: The emphasis on making is very important to me. I’m working with a sociologist, and we are thinking about designing classes in which the students make things. That’s all I can say about it so far, because I don’t know what that means, but I think the act of reading and writing, but then also making something, whether it’s a design or an object, simply working with your hands, I think these are critical acts of teaching and learning that have been removed from most educational practices.

The practice of narrative medicine

AJR: Now let’s turn our attention to the practical aspects of narrative medicine. Do you always teach narrative medicine in small classrooms?

RG: Almost always. We have different formats so we teach medical students, we teach nursing students, we teach public health students, we teach mid-career physicians, nurses and occupational therapists, and we teach writers with no medical training. One of the fascinating things about narrative medicine is that there are so many different groups of students, and they bring totally different experiences to the table. Doing sessions is almost always in small groups, because you have to be able to share your reading, to be intimate and open, otherwise the process doesn’t work. Sometimes we will have lectures for hundreds of people, but the lectures are only the supplement. The work happens in small groups with the texts, the reading and the writing.

AJR: Is that a difference between teaching medicine and narrative medicine?

RG: No, at least in United States there has been a move towards a mixture of teaching in small settings and large groups. Medical schools are consequently supplementing their large style formats with small group case analysis or bedside teaching.

AJR: So teaching students narrative medicine in a large auditorium, as we might do here in Odense in the future, can only be a supplement to the small format?

RG: I think so. I don’t think the point is to teach the theory or principles of narrative medicine, it really is a doing kind of activity. It’s not about knowing it per se.

AJR: Could you describe the ideal relational process of teaching narrative medicine?

RG: One of the reasons why narrative medicine focuses on shorter or short texts is because of the reality of everyday medical education and medical life where people feel very pressed by time. Ideally, texts are read beforehand and thought about before you even arrive. However, that’s not always practical so often we all read in class, usually at least twice, if the text is short enough, once to yourself silently and once aloud in a group. I like to hear students read. You can hear their different inflexions; they get engaged differently when they read. I encourage them to read with a pencil and to mark things. The question of what to mark in the text is open and should be open. You can ask them to circle words that they find interesting, confusing, that might have layered meanings, or structures within the text, some sort of pattern they might recognize. Reading with a pencil, I think, is particularly valuable.

AJR: I have noticed yesterday, that you dislike laptops among the students in your teaching, and you don’t use a computer yourself. Why?

RG: The only reason I dislike the laptop is that we have so many screens in everyday life; we should create space in our lives without screens, I think. Besides that, the screen can be distracting because there is likely to be a window or a browser open with e-mail, and the distractions are a potential problem.

AJR: Could you say more about the writing prompts? My own experience from teaching narrative medicine is that sometimes they work and sometimes they don’t.

RG: That’s true. It’s a kind of trial and error. You have to see if it’s going to create the right effect in the student. But the writing prompt that works almost always works. It’s not that they work in some contexts. And what is a good writing prompt? I think it’s one that’s not too specific, that allows for open endedness, and that allows the students to immediately reflect. A writing prompt encourages the student to not just say something, but also to reflect on how it’s said. We want the students to write “in the shadow of the text”, as we say in narrative medicine. So the text that they read should resonate with them. The text and the prompt should then encourage the student to make use of the text. It’s not a critical exegesis of that text. That is why I like that phrase, writing in the shadow of the text.

AJR: Is it also a matter of being aware of how close form and content are related to each other?

RG: Yes, and I think that is why the focus on narratology’s formalism has been present in narrative medicine as opposed to just thematic interests. There is something in these formal structures and the content-form relationship that are cognitively very crucial to understanding.

AJR: What did you do during the writing prompts that you gave the students yesterday?

RG: I always write myself too for a number of reasons. One, it’s an opportunity I get to leave the classroom and escape into my own writing. Two, it suggests that I’m not above the activity. You get a lot more comfort from the students when they see you’re participating in it as well. And especially when it comes to sharing your work, if you are going to take that leap, the students will follow.

AJR: Could it create problems that you on the one hand practice together with the students and on the other hand have to grade their papers?

RG: At the end of the day you are their teacher, and I think they understand that. Medical students are often processing very complicated emotions so they have to feel comfortable to do this work. It’s not only an intellectual activity; it’s also emotional.

AJR: Is it important that the text you choose treats illness? Or do you agree with Rita Charon that it sometimes can disturb the focus on textual form, if the text treats illness?

RG: I understand that argument, but I don’t subscribe to it. I think, especially when you deal with science students, you have to gain their trust and their interest. They are smart students, and they are interested in the sciences, so if you are trying to bring in the humanities – for me – it works much better to bring in textual themes that look familiar to them. Still, it’s got to be great writing. But I think having a little bit of something that feels like medicine is effective and more powerful.

AJR: Do you think there is a significant difference between medical students and the students from different degree programs (sick nurse, midwife, physiotherapist, occupational therapist) you have met yesterday?

RG: I wouldn’t say a significant difference, but I would say that medical students tend to be a little bit more dismissive initially. As I mentioned yesterday, social work students and nursing students are already doing this kind of work without recognizing it, so they take to it very easily. I prefer we do this a little bit, to have students from different schools in one group together. We have a project about collaboration, because it’s an important aspect of medical practice, and it’s an important aspect of all work life. What’s interesting is that there isn’t a lot of focus on it in any kind of under-graduate or graduate training. Everybody gets a transcript, everybody gets a grade, and yet in most professions they are going to work with other people. We don’t know how to train people to do that yet. One of the goals of the narrative medicine workshops is to teach people like social workers, sociologists, and medical students to collaborate.

AJR: That’s very interesting, I think. Do you have something to say about how narrative medicine can be applied in the rehabilitation of patients with serious illness?

RG: Illness memoirs are a perfect example. The memoir genre or self-writing is really a growing phenomenon throughout the world, because people are finding in writing that something happens, and that they can stitch their identity back together again. We have a whole slew of wonderful illness narratives. In The Two Kinds of Decay (2008) by Sarah Manguso, which we were going to read yesterday but did not have time for, there is no doubt that her writing is helping her manage her own illness. She is a professional writer, but I think also non-professional writers can gain something through writing. One of the truths about illness is that it divides you from yourself, it separates you from the person you thought you were or were going to be. The work of healing involves rebuilding that relation to yourself, and the act of writing can help you. Cheryl Mattingly writes about this in a book called Healing Dramas and Clinical Plots (1998). She is an occupational therapist and anthropologist as well.

AJR: Would you go as far as using the concept of therapeutic potential in creative writing?

RG: I think so. Again, I don’t do a lot of that personally. I don’t make my patients write, and it’s partly because of the structure of my medical practice, though I have been talking to some in my residency about trying to do a project about this. One thing I brought up yesterday was that we are finding that for patients who come to the hospital, whether or not they end up with a serious or life threatening disease, just the act of being evaluated for a serious disease is creating anxiety. Many patients are having higher rates of depression and PTSD. The question becomes: did the potential illness cause the depression, or did the depression cause the potential illness?

AJR: But you simply need to develop more research in this field?

RG: Yes, a lot more.

Developing the field in the future

AJR: I would like to end the interview by posing some further questions about the future of narrative medicine. Are you familiar with the recent qualitative research study (2014) of the medical students’ responses to their narrative medicine seminars at Columbia?

RG: I think, the study reported that the students were developing certain kind of features, ‘habits of mind’ even, like creativity, self-reflection; they are very satisfied with narrative medicine. I taught narrative medicine to medical students weekly for a while, and that was a fundamentally interesting experience because there’s resistance to it from some students initially but I find that most students, if they overcome that resistance, find it to be an incredibly rewarding process.

AJR: But it’s not enough to have qualitative research studies, you need, as we discussed earlier, some kind of evidence-based evaluation of your programs?

RG: That is, as I have said, the next step for us. In the humanities in general there isn’t a lot of data collected, and they probably don’t need it. It’s self evident that it’s a valuable activity. For medical school deans in the sciences they want evidence in their own terms, and we must think about what kind of outcomes matters for the students. What do we think is important, and in what way does narrative medicine affect those outcomes.

AJR: Do you think it’s possible to prove changes in physicians’ practice in this way?

RG: Absolutely. Even though I don’t know what that study would look like. There are these studies that I’m not particularly fond of like the PET scans of your brain when you read an uncomplicated text compared to a complicated text. That kind of evidence doesn’t convince me very much. Asking questions around language and identity from a neuroscience lens can provide evidence in the future. I think we are going to see more studies of cognition, and that may be one direction. But those scans of the brain that I have seen are not sophisticated enough.

AJR: Do you know about Rita Felski’s monograph Uses of Literature (2008)? She is a guest professor at University of Southern Denmark in Odense leading the project Uses of Literature: The Social Dimensions of Literature from 2016 to 2021. How, in your opinion, could narrative medicine be seen as a ‘use of literature’ that has social dimensions?

RG: First of all, it’s very exciting that she is spending time here and helping to develop these programs, and thinking about Rita Felski’s work in relation to narrative medicine is a very rich idea. And I do know her work! For me, the Uses of Literature reinvigorated or, to use a term which I think Felski also uses, it re-enchanted the world of literature with pleasure, beauty and interest. I think she called her book an ‘un-manifesto’, and she reminds us of the importance of the experiential states and of phenomenology, and I think without a doubt those are central concepts to narrative medicine, to the lived experience and to the practitioners. The theory of narrative medicine is, as I have already explained, very much in the service of practice. Both narrative medicine and Uses of Literature want to ground themselves in everyday practice and find a central role for the concept of recognition. It’s possible to look more at Felski’s idea of recognition and see if narrative medicine can gain something from that.

AJR: And maybe vice versa?

RG: I think so.

AJR: Narrative medicine involves studying literature and art (paintings, music, etc.). Could narrative medicine embrace attention to language and linguistic studies? In Denmark literary studies and linguistics are closely related.

RG: The term narrative medicine is an elastic term. As I said in the beginning of this interview, it’s rather a stance or a set of positions. We read poems, we read drama and engage with visual imagery; it would be pedantic to focus too hard on the term. It’s much more a question of the use of arts in general. Oscar Wilde famously defined art as “something that is quite useless”. A lot of us grew up with that idea, and one of the pleasures of art is that it’s non-utilitarian. But for narrative medicine it’s a different question, because it really is about trying to think of the value of everyday life. Once upon a time art had a religious function. I think we, over the years, lost some of its storytelling function, and narrative medicine tries to bring back some of these older values of literature.

AJR: Would you like to elaborate this profound thought? I understand that you are interested in historicizing medicine.

RG: I take Frederic Jameson phrase very seriously; he says “always historicize”. For Jameson, reading is an act of recovering the relationship between freedom and necessity. There is a dialectic of history, and all literary texts are somehow representative of that conflict. To understand any text, you have to understand its historical context. One of the complicated issues around medicine is that we name diseases after people, and nobody remembers who those people were except the historians. In humanities, history is always a part of the activity, whereas in medicine, history is often erased, and I think that makes it seem like the present is always inevitable. That is something I push back a little bit. If something seems too natural, you lose the importance of doubt and uncertainty.

AJR: Is your point of view influenced by Michel Foucault’s idea of genealogies?

RG: It could be. Illnesses have a history; they are not like species. We don’t look into a garden to find them there. To some extension, we construct illness. It represents reality, but illness is not naturally given. We could also begin to talk about biopolitics and biopower.

AJR: Maybe also Foucault’s concept of ‘episteme’ could be useful, if you want to relativize the medical knowledge of the present?

RG: The borders of health and illness, like the normal and the pathological, are fragile – new illness emerge and old illnesses disappear, possibly as a result of epistemic shifts. Sometimes an illness is a product of the pharmaceutical industry. The pharmaceutical industry makes a medicine and then decides that they now need a condition to treat. Unfortunately, it can go that way too. We need people to unravel this as well.

AJR: Close to the end, what do you think is the future of narrative medicine?

RG: The picture of narrative medicine is bright. It’s exciting that we from Columbia can practice and participate in the development of narrative medicine in Odense. It’s something that we can learn from back in New York, and it’s important to be understood and uncovered in multiple places. The global trend is very exciting.

AJR: If you find the time to write a monograph about narrative medicine, and I hope you will soon, what will it focus on?

RG: I exist wholly in two different worlds. On the one hand I practice emergency medicine, and I’m a doctor. On the other hand I am a reader and a literary scholar. When I’m doing one or the other, I try to really be in the method of each discipline. For me, I’m fascinated by the contemporary novel and a current cultural trend that values the neurological over the mental or the psychiatric. I am working on a book about the neurological turn.

 

 

References

Broyard, Anatole. Intoxicated by My Illness: And Other Writings on Life and Death. Ed.

Alexandra Broyard. Clarkson Potter. New York. 1992.

Berlin, Lucia. A Manual for Cleaning Women. Selected Stories. Farrar, Straus and Giroux. New

York. 2015.

Charon, Rita. Narrative Medicine: Honoring the Stories of Illness. Oxford University Press.

Oxford/New York. 2006.

Charon, Rita et al. The Principle and Practices of Narrative Medicine. Oxford University Press.

Oxford/New York. 2017.

Comer Kidd, David and Emanuele Castano. “Reading Literary Fiction Improves Theory of

Mind”. Science, 342, 2013, p. 377-380.

Felski, Rita. Uses of Literature. Blackwell Publishing. Oxford/Malden. 2008.

Goyal, Rishi. ” Narration in Medicine” in Peter Hühn et al. (eds.) The Living Handbook of

   Narratology. Hamburg University. Hamburg. 2013.

Lorde, Audre. The Cancer Journals (special edition). Aunt Lute Books. San Francisco. 1980.

Manguso, Sarah. The Two Kinds of Decay. Farrar, Straus and Giroux. New York. 2008.

Mattingly, Cheryl. Healing Dramas and Clinical Plots: The Narrative Structure of Experience.

Cambridge University Press. Cambridge. 1998.

Miller, Eliza et al. “Sounding Narrative Medicine: Studying Student’s Professional Identity

Development at Columbia University College of Physicians and Surgeons”. Academic

   Medicine, 89, 2014, p. 335-342.

Nelson, Maggie. The Argonauts. Graywolf Press. Minneapolis. 2015.

 

 

Anders Juhl Rasmussen has a PhD in Danish literature and is currently a postdoctoral research fellow in narrative medicine at University of Southern Denmark in Odense. He is also the coordinator of The Nordic Network for Narratives in Medicine.

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