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Humanities Education

A Conceptual Framework for the Use of Illness Narratives in Medical Education

Kumagai, Arno K. MD

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doi: 10.1097/ACM.0b013e3181782e17
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At its core, medicine is a type of applied humanism, that is, the application of science in recognition of human values and in the service of human needs. As defined by Branch and colleagues,1 humanism in medicine is “the physician’s attitudes and actions that demonstrate interest in, and respect for, the patient and that address the patient’s concerns and values.” Within the larger context of introducing humanistic approaches to patient care as part of medical training, many institutions, including our own, have incorporated narratives into the curriculum.1–6 The goal of these efforts is to introduce the patient’s perspective into the students’ understanding of illness in order to train physicians to adopt more “patient-centered” or “relationship-centered” approaches to delivery of medical care. The underlying principles of such efforts emphasize humanism, empathy, interpersonal connections, patient autonomy, and dignity.1,2,7–9 There is currently a plethora of ways in which narratives in particular2,10 and humanities and the arts in general—including literature,7,11 music,3 and visual art12—are being incorporated into medical education; however, the mere presence of nontraditional material does not guarantee that exposure to these subjects will result in more compassionate doctors. Given that resources are limited, and curricular time is a precious commodity, there is a compelling need for an overarching conceptual framework to guide the educational efforts to introduce humanistic principles into medical education.

In this article, I would like to propose an approach to the use of narrative in medical education that is grounded in theories of moral development and empathy, and to suggest specific pedagogical techniques that may effectively incorporate these theories into educational practice. As an example of how this approach may be implemented into actual curricular changes, I will describe The Family Centered Experience, a program started at the University of Michigan Medical School in the fall of 2003, which uses patient narratives to enhance the development of empathy in physicians-in-training.

The Development of Empathy

To understand and design educational approaches to fostering empathy in physicians-in-training, the nature and development of empathy should first be understood. Empathy may be generally defined as the capacity or action of “understanding, being aware of, or sensitive to, or vicariously experiencing the feelings, thoughts or experiences of another.”13 Implicit within this definition is the idea of individuals as social beings; and as a positive social attribute, the concept of empathy validates the relationships that are at the core of human interactions and is, therefore, intimately connected with the concept of moral development.

Throughout history, all societies and cultures have generated ethical principles and codes of conduct in order to reconcile individual self-interest with that of the group. More recently, cognitive-developmental theorists—most notably Jean Piaget,14 Lawrence Kohlberg,15 and their successors16—have proposed models in which the development of the self is intimately linked with discovery of the other. Development, according to these theories, occurs in an invariant sequence of stages that in part involves the gradual recognition that other individuals have perspectives and values which differ from one’s own. A fundamental aspect of these different stages is a reconciliation of self-interest with that of others, that is, the gradual acquisition of skills in exercising self-interest in the context of a society of similarly motivated individuals. Both Piaget and Kohlberg see progression through each of their respective developmental stages as occurring in a cognitive, rather than affective, domain; that is, although both thinkers stress the importance of social interaction in moral development, both see individual moral development as a cognitive process, largely divorced from the feelings that those experiences evoke.14,15,17

So, how can we reconcile cognitive moral development with the development of empathy, which, as described above, involves the affective, vicarious identification with another individual’s experiences? Developmental psychologist Martin L. Hoffman17 directly addresses this question by proposing a model that incorporates both cognitive and affective processes in the development of empathy. Hoffman17(p30) defines empathy as involving “psychological processes that make an individual have feelings that are more congruent with another’s situation than with his or her own.” Following the constructivist tradition of Piaget and Kohlberg, Hoffman places the development of empathy into the general context of development of the self, from an unclear self/other differentiation to a growing awareness of the “separateness” of self and others’ physical states, internal states, and, finally, thoughts, values, perspectives, and lives. Though he adds an affective dimension to his theory of development that is not present in Piaget’s14 and Kohlberg’s15 approaches, Hoffman17 shares their constructivist view of development as a series of chronological stages, which are grouped into early, unconsciousness reactions and more mature, higher-level conscious reactions.

According to Hoffman,17(p4) a key aspect of empathy is empathic distress, which he defines as the psychological discomfort that one feels when encountering someone who is suffering. The response to empathic distress may take the form of one of several reactions, depending on the individual’s developmental stage. Early reactions in infants are involuntary, rapid, and do not involve cognitive awareness. Beginning with older children and adolescents, responses may include mediated association, in which an individual may feel empathy towards the sufferings of another without the other’s being physically present; that is, a response to another individual’s distress may be elicited through language, such as stories, songs, movies, etc., or pictorial representation, such as photographs or paintings. Such mediated association requires recognition of the other, an ability to adopt the other’s perspective, and consideration of the other’s experiences in light of one’s own experiences and values. More advanced stages involving conscious modes of empathy—which are more pertinent to adult learning—include role-taking, which may consist of self-directed role-taking, wherein someone else’s experience elicits a response in which the individual imagines how he or she would feel in a similar situation, and other-directed role-taking, wherein another person’s experiences elicit a response in which the individual imagines how he or she would feel in a similar situation while taking the other person’s life context into account. Like Kohlberg, Hoffman envisions a close association between empathy and justice. According to Hoffman,17(pp250–275) in its more mature manifestations, empathy towards a distressed or disadvantaged group may take the form of a commitment to social justice, with an implicit recognition of the value that each individual has within the group.

Hoffman17(p87) maintains that maturation of the empathic response also involves the gradual transformation of empathic distress into sympathetic distress. The initial feelings of distress at the sight of someone who is suffering gradually mature into a feeling of concern for the other person, and the motive to comfort oneself (i.e., to relieve one’s own empathic distress) is transformed into a desire to help. This response is both affective and cognitive in that the emotional response is coupled with a cognitive awareness of oneself and others as separate, independent entities. Hoffman17(p80–81) also proposes that in the more mature stages of empathic development, sympathetic distress may be enhanced by so-called hot cognitions, that is, situations in which the plight of another person triggers the recollection in the observer of a similar event or situation in his or her past. This recall is thus charged with affect, and the person may respond by either self-directed or other-directed role-taking.

The Family Centered Experience

With an understanding of the nature and developmental aspects of empathy, we may now consider the value that narrative brings to medical education. I would like to do so by discussing these themes within the context of the Family Centered Experience (FCE), a comprehensive, required, two-year program at the University of Michigan Medical School that uses patient narratives to foster humanistic, patient-centered approaches to medicine.4 In the FCE, pairs of first- and second-year medical students make home visits to families of individuals with chronic illness to listen to stories of the volunteers’ experiences with chronic illness and its care. Three visits per year are scheduled with the same family for the two years of the program, and the visits are organized according to different themes pertaining to the experience of illness, for instance, the impact of illness on the self and family; the relationship between doctors and patients; receiving bad news; stigma and illness; and resources and obstacles in accessing and receiving health care.

After each of the home visits, students meet in small groups of 10 to 12 students with a faculty clinician facilitator. To foster and maintain an environment of safety for discussions of highly personal or emotionally charged issues within each group, the small groups and their clinician instructor remain the same throughout the two years of the course, and the instructors undergo extensive faculty development in topics as diverse as interactive teaching, active learning, facilitation of contentious or difficult discussions, and feedback and evaluation.18 Through interactive, student-led discussions, the students share impressions and insights generated from their conversations with their volunteers and engage in activities, such as role-playing or perspective-taking exercises, that are designed to help the participants bring their own personal experiences, assumptions, and biases into the discussions. Exchanges are enhanced by readings from literature and the social sciences, preparatory reflective essays, and “free-form” interpretive projects. The latter involve collaborative work by pairs of first-year students, with the objective of expressing the students’ personal understanding of their volunteers’ perspective and experiences using a wide variety of media. These efforts have resulted in original works as varied as multimedia presentations, short stories, one-act plays, songs, music, dance, sculpture, paintings, and mini-documentaries.

Twice yearly, students are evaluated by the depth and quality of their understanding and insights regarding the patient’s experience of illness, as well as their readiness to engage in self-reflection as part of the learning process. The basis for these assessments is the quality of their reflective essays and contributions to the discussions. Patients’ feedback about the students with whom they share their stories is also a critical element in student assessments. The activities of the FCE serve as a foundation for the students to explore the patient’s perspective; the program’s ultimate aim is to train physicians who are equally skilled in understanding both the complexities of clinical medicine and the personal, cultural, and psychosocial aspects of illness and its care.4

Empathy and Narrative: The FCE’s Pedagogical Approach

Although we often speak of medical education in terms of the acquisition of knowledge and skills, it is clearly much more than that. As described by Hafferty and others,19,20 the development of physicians is shaped by a hidden curriculum, which, through role modeling, informal conversations, expectations, and social norms, exerts a powerful influence—both beneficial and pernicious—on the attitudes, values, and behavior of physicians-in-training. The culture of medical training affects the meaning of medicine that individual physicians develop, and, in this environment, learning occurs on cognitive, affective, and experiential levels. Shaping the ways in which students learn the meaning of medicine is, therefore, a critical part of medical education. One of the ways in which meaning is learned is through stories. In fact, in the context of human history and culture, stories arguably represent the most effective vehicle that human beings use to communicate the meaning of an existentially important experience to one another. Stories may therefore foster and develop empathy in physicians-in-training in a number of critical ways.

First, narratives of illness offer a glimpse into the subjective experience of illness; they offer an entry into the “kingdom of the sick”—in Susan Sontag’s21 words—and, in doing so, provide a complementary perspective to the biomedical knowledge acquired through the study of disease processes.2,7,8(p206) As such, narratives may stimulate mediated empathic associations and responses in the listener, even in the absence of the individual who suffers. If, however, actual people (e.g., individual patients) participate in the educational experience, the physical presence of, and interactions with, another human being whose life is profoundly affected by chronic illness, as well as the story he or she tells, may foster an interpersonal link in affective, cognitive, and experiential domains. This, in turn, will enhance perspective taking, stimulate other-directed role taking, and serve as the basis for a hot cognition17 for empathic feelings between the learner and another individual. Daloz22 refers to this type of interaction as a “constructive engagement with otherness” in which the listener may form a personal attachment with someone previously viewed as very different from himself or herself. This opportunity to develop perspective taking is particularly important for those students who have not had any personal experience with significant illness or injury and who may look on patients from the privileged position of youth or health. In contrast, the often “two-dimensional” individual patients portrayed in paper-based cases do not allow for true interpersonal interactions, and, because of the medically based language in which the cases are often written, they may actually dehumanize the patient and minimize observers’ appreciation of the patients’ suffering.23,24

In the FCE, we4 have found that a face-to-face conversation with an individual with chronic illness, as well as with members of his or her family, add complexity to the learner’s understanding of the experience of illness by offering the opportunity to meet the patient in what Kleinman8(p206) has described as “the messy, confusing, always special context of lived experience.” In a recent study,25 a second-year student who had worked with a volunteer with diabetes and advanced complications remarked,

Our patient had diabetic neuropathy: she has prostheses for her feet, she had a kidney transplant, and she’s had eye problems from it too…. [T]hese were permanent things I really didn’t know could really occur. Even after we learned about it in class, it really doesn’t strike you until you see it. Like every day she still can’t stand on her feet, she has to use prostheses. If you go visit her at her house, she has to wear these shoes to walk around or get up to see someone.

From such encounters, students may acquire an understanding of chronic illness that is personal and immediate rather than abstract and “statistical”: their knowledge of the illness is emotionally and empathically charged from the personal relationship which develops between student and patient–storyteller. In addition, comparison of the stories of different individuals with the same medical condition (e.g., breast cancer, multiple sclerosis, or type 1 diabetes) may serve to underscore the diversity of backgrounds, beliefs, and human responses to chronic illness in such a way that the particular (e.g., an individual with chronic illness), as well as the general (the spectrum of human experience), may be explored.4

Second, very closely linked with their ability to foster perspective taking, narratives derive their power to communicate meaning in part through their ability to appeal to fundamental, universally held emotions—loss, anger, jealousy, joy, sadness, a sense of injustice, etc. This appeal gives hot cognitions their psychological and emotional force and may arouse a sense of urgency in the listener to address the causes of an individual’s suffering. In addition, when coupled with a moral dilemma or evidence of inequality, this type of hot cognition may inspire a commitment to understand and address causes of social injustice.17(p250–275) Recognition of the universality of emotions may span the distance created by time, language, culture, race, socioeconomic class, gender, or sexual orientation to evoke a “shock of recognition” within the self for the emotions, struggles, and life of a very different other.26

Third, narratives have the ability to foster identification with the other; however, in presenting ideas, beliefs, life circumstances, or perspectives that are not congruent with one’s own, certain narratives also create emotional or cognitive dissonance within the self. By posing morally ambiguous or conflicting situations or situations which challenge the validity of one’s worldview, certain stories stimulate self-reflection on one’s own perspectives, values, and biases and are all the more powerful in doing so because of their link with fundamental processes in learning and moral development. Both Piaget27 and Kohlberg15 believe that progress from one developmental stage to another is initiated by a cognitive disequilibrium, which occurs when an individual encounters unfamiliar or new ideas, values, perspectives, or circumstances. This conflict stimulates self-reflection, as well as a heightened awareness of oneself and others in the world, and it results in new learning on a fundamental level which incorporates these new perspectives into one’s own worldview. The importance of this concept is underscored by its prominence in the work of other theorists as varied as Hoffman,17 Mezirow,28 Freire,29 Giroux,30 and Habermas.31 I would propose that this is also the mechanism underlying the educational importance of Branch et al’s32 “critical incident reports,” Bolton’s7 “meaningful moral dilemmas,” or Wear and Nixon’s33 view of literature’s ability to evoke discomfort and vulnerability. These approaches may be used to stimulate critical self-reflection and engaged discussion on questions of humanism, patient care, professionalism, ethics, and social justice.

An example of the use of narrative to provoke cognitive disequilibrium can be found in Fadiman’s34Spirit Catches You and You Fall Down, a text we use in the FCE. The conflicts between the family of Lia Lee, who is Hmong, and their white American pediatricians, Neil Ernst and Peggy Phillips, are all the more tragic, not because one party is absolutely wrong, but because both parties are partially right. The best intentions of each, nonetheless, result in devastating consequences. This conflict between two “rights”—the Lees’ and their doctors’—create divided loyalties in the thoughtful reader and provoke reflection on one’s own perspectives and values. They force the question, “What would I do if I were the Lees or their pediatricians?”

In the FCE, we also incorporate this concept in small-group interactions through the instructors’ posing of questions or introducing examples of clinical situations which involve ethical conflicts, ambiguities, or controversies in order to stimulate thoughtful discussion. In this setting, the instructors are trained to gently challenge the students’ preconceptions and biases regarding illness, disability, medical care, and doctoring in order to stimulate an honest exploration of their own, each other’s, and society’s assumptions, values, and beliefs.18 This type of engaged discussion may be achieved productively within the small groups because of their longitudinal nature and fostering of trust within the groups, the confidentiality of each group’s discussions, close monitoring by faculty instructors, and “ground rules” established early on by each group.

As mentioned above, in the small groups, we aim for the creation of reflective discussion to explore the insights the students have gained from the stories of their volunteers. Mezirow35(p11) defines reflective discourse as a “critical assessment of assumptions [that] leads towards a clearer understanding by tapping collective experience to arrive at a tentative best judgment.” Reflective discourse is not mere discussion of a particular subject. Rather, it is the collective engagement of diverse personal identities, values, life experiences, and beliefs in developing a deeper understanding of the meaning of an experience. I would agree with Branch’s36 assertion that small-group discussions are superior to lecture-type formats in fostering ethical, humanistic professional identities among physicians-in-training in part through their capacity to stimulate active self-reflection and engagement with others. In addition to self-reflection, and critical to this type of discourse, are an openness to a diversity of views, participation of traditionally silenced voices (e.g., women, students of color, gay/lesbian students), empathic and active listening, and suspension of judgment. By giving voice to different perspectives, the group becomes open to diverse (and, at times, divergent) worldviews, which may enhance growing and learning through cognitive disequilibrium27 and consensus building through engaged discourse as the basis for moral action.31 In this setting, the instructor’s role is not to impart information but to facilitate discussion and pose questions that stimulate deeper exploration of the themes.18,29,35,37

Beyond Professionalism: Transformative Medical Education

Empathy, which is at the core of patient-centered, humanistic approaches to medicine, is based on the vicarious identification with another individual’s suffering. Fostering this quality in physicians-in-training requires more than an acquisition of knowledge, skills in communication, or lists of codes of behavior: it involves a transformation of perspective and activities that stimulate self-reflection and engaged discourse, an internalization of humanistic values, a critical exploration of one’s own and society’s assumptions, biases, and values, and a commitment to enact the values that the profession espouses.33,38,39

The type of learning that the use of narratives attempts to enhance is, thus, fundamentally different than that involved in the teaching of the biomedical sciences. It is transformative: it consists of a process that involves learning on cognitive, affective, and experiential levels and results in a shift in nonverbalized, habitual, taken-for-granted frames of reference towards a perspective that is more open, reflective, and capable of change.28 This shift in perspective is not limited to a particular subject but encompasses a wholly different way of seeing oneself in relationship to others and the world. For example, after listening with openness and sincerity to a family’s story of their thoughts, feelings, and fears surrounding the diagnosis of type 1 diabetes mellitus in their 10-year-old daughter, a medical student, whose prior understanding of the disease has been limited to a knowledge of pathophysiological mechanisms and insulin therapy, may begin to understand that “diabetes isn’t just about blood sugars” but that it represents an entire way of living in which each minute of each day involves choices, risks, and restrictions.25 Through the story and through the self-reflection and discussion the story may provoke, the student’s awareness of the patient and the family may change such that there is a shift from a purely instrumental, cognitive knowledge of the biomedical sciences to knowledge that incorporates an understanding of biological processes into an orientation associated with serving human needs.40 This shift represents not a change in beliefs about diabetes but a change in the frame of reference with which the student approaches individuals with diabetes in particular and, with additional discussion and insight, individuals with chronic disease in general.25 With this awareness, the doctor–patient relationship changes from subject-to-object communication to intersubjective communication and action: the patient is no longer reified as an object to be worked on but an active subject to be worked with.

So, how do we know whether efforts incorporating narratives yield the desired results? As mentioned above, the students’ understanding of the patient’s perspective is assessed during the two years of the FCE through scheduled evaluations by faculty instructors, as well as feedback from the volunteers. However, this does not answer the question of whether the programmatic development of narrative approaches—as well as the substantial commitment of resources this entails—results in shifts in students’ perspectives toward more humanistic, patient-centered approaches to medical care. Several quantitative instruments have been published to assess changes in students’ attitudes toward medicine and patient care—for instance, the Patient-Practitioner Orientation Scale41,42—and ongoing, longitudinal survey studies of students’ attitudes are currently being conducted at our institution. Nonetheless, I would argue that if the intention of these studies is to document a shift in “meaning perspective” (Mezirow)35 in students’ attitudes towards patients and medicine, qualitative approaches may yield a more in-depth, rich understanding of the impact of such interventions. Whereas quantitative methods may measure the prevalence of certain attitudes and beliefs, qualitative methods are uniquely capable of exploring the meanings which individuals confer on events or life experiences.43,44 With this in mind, we recently conducted two qualitative studies to assess the impact of the FCE on medical students: the first, a focus-group study of first-year medical students, explored the understanding of the psychosocial dimensions of illness students gained through conversations with FCE volunteers,4 and the second, a study using in-depth, one-on-one interviews with second- and third-year students whose FCE volunteers had diabetes, investigated the ways in which the conversations shaped the students’ understanding of diabetes and how this knowledge differed from that acquired through traditional lectures and textbooks.25 Both studies have offered evidence that the personal interactions between the students and volunteer patients of the FCE have fostered an understanding of chronic illness in general, and diabetes in particular, that combines the instrumental biomedical knowledge gained through traditional educational approaches with a personal, affective, and experiential knowledge acquired through the students’ relationships with patients and their families. As one student respondent described the process, “It opens your eyes, it’s enlightening and I think it makes you see things and realize things that maybe you hadn’t seen before.”4

Narratives, either through literature or as the personal stories of individuals with illness, help prepare the ground on which such a transformation may occur by allowing glimpses into the subjective world of lived experience, forging emotional links with the other, stimulating self-reflection through cognitive dissonance, and eliciting resonance of similar, fundamental emotions in the learner. Also key to this type of approach is transformation of the educator’s frame of reference to one that incorporates a shift from the expert/novice paradigm to an explicit validation of the perspectives, values, and experiences which students bring to the learning environment. Although I would completely agree that the culture in which medicine is taught and practiced must be critically assessed to address the more negative, dehumanizing influences of the hidden curriculum,38,39,45 a critical gaze must be also directed on the ways in which the incorporation of narratives and humanism is framed. Indeed, because most medical students enter their training with idealism and compassion and subsequently have it “trained out” of them,33 it is inappropriate—and, perhaps, presumptuous—for medical schools to “teach” students empathy. It is, instead, our responsibility to engage the students in learning activities which allow them to shape the empathy and idealism that they bring into the educational environment into powerful tools for healing. The Brazilian educator Paulo Freire29(p81) once characterized the act of teaching as the practice of freedom. This perspective, I believe, lies at the heart of humanistic approaches to medicine: to “rehumanize” the relationships between doctors and patients, students, and teachers such that the value of human beings is realized, not as a means to an end but as an end in itself.


The author would like to thank Casey White, Rachel L. Perlman, Monica L. Lypson, Joseph C. Fantone, and Paula T. Ross for many important discussions; Dr. Lindy F. Kumagai for his suggestions, inspiration, and commitment to medical education; and the volunteers, students, and faculty of the Family Centered Experience for their efforts in teaching and learning.


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