matter of life and death:

narrative (and) medicine

Clare Hayes-Brady

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How do we talk about getting old? About becoming or being ill? About dying? In recent years this question has been asked regularly, a response of sorts to what we might call the conceptual alienation of death and illness. As Atul Gawande wrote in his lyrical meditation on mortality Bring Mortal, death has never been more removed from life. The travails of the mortal body are sectioned away like so much gangrenous flesh, examined in sterile conditions, under bright, strange lights, by bright, strange eyes. The concept of dying of old age is being gradually defamiliarized. A doctor in an Irish hospital spoke to me once about elderly patients who slip away in hospital beds, peacefully, of old age, the kind of simple system shutdown that characterises the body’s planned, necessary obsolescence. This doctor mused that you cannot write “old age” on a death certificate in Ireland as a cause of death. Gawande’s reflection is one of a number of gestures towards developing a healthy grammar of mortality, along with the growth of the Death Cafe movement (www.deathcafe.com), a worldwide non-profit collective whose stated aim is “to increase awareness of death with a view to helping people make the most of their (finite) lives” and the growing cultural awareness of end of life care and the question of the right to die through as seen in the decorous documentary on Terry Pratchett’s death and in the bestseller Me Before You and its film adaptation, which emotively address the question of a young man choosing a good death over a bad life. At the recent funeral of a much beloved 95-year-old family member, I found myself in a conversation about the different cultural approaches to death we had encountered, from the almost joyous celebration of this life well lived that is so familiar to Irish mourners to the more private solemnities we had encountered at funerals in Britain, particularly England, where some of us have lived, and through the funeral practices of Middle Eastern and Asian communities, whose specifically time-bound customs emerge in some ways from climate, as do our own more protracted obsequies. Death, we concluded, is a thing the Irish do well, in the normal run of things. A death like this one – peaceful, natural, quite ordinary – is one to be thankful for. Tragic deaths, too, we agreed, were eased by the wellspring of support and openness that typifies the Irish mourning process, a kind  of reminiscence as consolation. Some years ago the sudden death of a friend was much magnified by a hasty and exclusive funeral; the profound grief and shock of the family made understandable their wish for solitude, but the unrelievedness of the loss made our collective grief radically individual and suddenly, terribly lonely, and meant that this death echoed in a way that others had not before and have not since. Joan Didion once commented that we tell ourselves stories in order to live; it appears that we also tell ourselves stories in order to cope with death. In making his plea for a sensible and direct relationship with death and its liminalities, Gawande say that he “never expected that among the most meaningful experiences [he would] have as a doctor – and, really, as a human being – would come from helping others deal with what medicine cannot do”. Gawande’s book begins with a reflection on pain and dignity in Tolstoy’s Ivan Ilych, and ends with the story of scattering his own father’s ashes in Varanasi; where medicine cannot reach, it appears, narrative steps in.

Death and narrative, then, are connected in various ways, but as Gawande argues, thinking about mortality should be part of the longer dialogue of healthcare, not merely a nexus of failure. How – and why – might we involve narrative in the day-to-day questions of medicine? In some ways, of course, narrative gathers around healthcare like swarming bees. Global news cycles pulse constantly with hysterical stories about healthcare. Stories about the ethics, efficiency and progress – and especially the cost – of medicine occupy perhaps more newspaper inches, blog space and airtime than any other topic. This is understandable enough, given both its centrality and its thorny issues of life and death, humanity and economy, dignity and rights. From (often justly) outraged articles over inefficiency in health systems to the breathless relation of the latest astonishing leap forward in knowledge to the clickbait headline that guarantees immortal life and baby-soft skin to those who are wise enough to buy this snake oil, a snapshot of media coverage of healthcare stories tells us where we are, what we fear and how we see ourselves as a society. In our stories about caring for the sick we see reflected our society, our politics, our wealth and the best of our thirst for knowledge, as well as our superstition, our moral wars and our capacity for truculence and selfishness. Far away from the practice of medicine, metanarratives of miracle and misery shape the way we think about life, health and death, so it is perhaps interesting to consider the possible applications of narrative within the practice of medicine. Education that focuses on the importance of communication in science in general is emerging as an important element of professional practice, with modules and whole graduate degrees focusing on communication for scientists – in Ireland, DCU’s MSc in Science Communication stands out as an example. Indeed, in a world in which climate change and evolution are routinely dismissed because of a “differing opinion”, it is important to move away from the “facts speak for themselves that characterised much of the scientific rhetoric of the late twentieth century. How, then, do we align the workings of narrative with the specific tasks of healthcare?

David Foster Wallace’s cult favourite novel Infinite Jest borrows from Hamlet in its opening meditation on embodiedness. “I am in here” muses protagonist Hal, opening the narrative with a sharp division between the mind (I) and the body (here). The cooperation and conflict of mind and body has explicitly occupied Western thought since Descartes, and exists in almost every tradition of thought or belief in some form, from the religious tenet of the immortal soul to the transhumanist fantasy of an uploadable consciousness. Like countless other writers, Wallace goes on to trouble this division, in Infinite Jest by tormenting his characters with mental and physical problems from drug addiction to isolation, from paraplegia to the struggle for mastery of the physical self. Addicts in recovery talk of the loss of the self, the loneliness and fear that comes with addiction, the dislocation and pain of a life and body beyond control. The physical and mental are tied to one another, bound and hopefully healed by witnessing, by the act of narrative. The writer’s knowledge of the body is as important as the physician’s; to represent the knotting and unknotting of muscle, the flow of blood, the jangling of nerves and wail of hormones, the author must be an anatomist, no less than the painter, the sculptor, the doctor. In the context of practicing medicine, too, narrative is indispensable, whether we know it or not. Doctors and surgeons work with the body, but the body’s experience is mediated through language; the data of medical practice, of x-rays and MRIs, of scanning and prodding and peering and listening, are fundamentally underpinned by the question, the massive, abstract, unanswerable “where does it hurt?”, a gap between patient and physician that can be bridged only by telling a story. A medical practitioner does not have direct access to the experience of a patient; even the patient themselves does not have the capacity to experience and acknowledge pain in a way that is extra-linguistic, so it is only through narrative that any kind of healing can take place. In other words, strange as it seems, physicians and nurses are (or ought to be) some of our finest and most important interpreters of story. Over the last number of decades, this connection has begun to be recognised, and the term “narrative medicine” has become one term for the context in which Gawande’s encounter with Ivan Ilych took place, though the module went by another name. The vital importance of ‘narrative competence’ to the practice of medicine is today broadly recognised in academic and practical settings, with narrative medicine forming one of the branches of the emerging discipline of medical humanities. Though medicine and literature may have come to seem poles apart in the specious contemporary grammar of humanities versus science, the two disciplines offer much to each other in terms of creativity, empathy and practicality, colliding in their mutual reliance on the lived experience of body and mind. Indeed, the emergence of medical humanities as an academic discipline reflects a kind of collapse of the invidious oppositionality of science and the arts.

The specific goals of narrative medicine vary widely, from encouraging holistic thinking in medical students to retroactively diagnosing fictional characters to developing bibliotherapy programmes, running the gamut from literary criticism and creative practice to public health policy and individual patient communication. The scope for productive exchange between the disciplines is enormous. Narrative medicine offers scope to improve cultural literacy around illness and disability through simple visibility. Like any marginalised group, the politics of representation around ill or disabled characters can be fraught with complication, but the visibility of a condition affects awareness and acceptance on an individual and social basis, and sometimes research focus and funding at a higher level. Seeing Julia, the autistic Muppet recently introduced to Sesame Street, reflects a greater level of awareness of autistic spectrum disorders. Julia’s importance is not necessarily linked to the search for or desirability of etiologies and treatments of autism, but her visibility provides a vital non-medical vocabulary for the recognition and discussion of an illness. This form of visibility involves high-level social awareness of a range of conditions and health practices, and is therefore an important tool at the disposal of public health policy makers, but it is also important on an individual basis, in the life of a young patient with a disability who sees a superhero who looks like them, or who reads about a character living with a chronic illness. The cultural inclusion of characters encountering specific medical issues, be they questions of aging in Anne Tyler’s The Beginner’s Goodbye, reproductive politics in the 2014 film Obvious Child or the ethics of human cloning in Kazuo Ishiguro’s Never Let Me Go, the cultural representation of the body both reflects and conditions our engagement with our self-image. Like the best fiction has always done, these narratives offer space within which to consider the implications of living in certain conditions, individually and societally. The shock of recognising our own experiences in fiction or film offers scope to think and speak abstractly about lived experiences, or potential lived experiences. Posthumanist narratives imagine scenarios in which we might live forever, a goal under hot pursuit by a subculture of transhumanists discussed in Mark O’Connell’s remarkable 2017 book To Be a Machine; a condition that is at once wholly alien and strangely familiar; it is possible that science may divest us of our physical limitations at some future point, but fiction has been doing it for millenia. 

Columbia University offers a Master of Science in Narrative Medicine that aims to develop “humane and effective medical practice” through its drive to “strengthen the overarching goals of medicine, public health, and social justice, as well as the intimate, interpersonal experiences of the clinical encounter”. It is an old and perhaps overdetermind chestnut that fiction helps us to develop empathy. A brief search returns hundreds of essays, articles and opinion pieces ranging from the journalistic to the rigorously researched and peer reviewed to support the hypothesis that reading makes us better people. A 2013 Scientific American article even notes that literary fiction in particular (over genre fiction, which in this case seems to be code for romance) appeared to expand the capacity for empathy in the subjects of a study at New York City’s The New School. Whether reading does make us more empathetic, and whether more empathy is an unequivocal good, are questions for another time; self-improvement is not the reason we read, though if it is a side-effect it is a welcome one. But one side effect of reading that receives less attention and is arguably more relevant is that of different vocabularies. Empathy is a tricky thing to measure, but while empathy may well be important to the efficient practice of medicine, there is a level before empathy: understanding. Physicians speak a particular language, a tongue of bastardised Greek/Latin hybridities and syllabic iterativity, of molecules and organs, -ectomies, -ostomies, -itises and –oses. Not without reason is this language called clinical: it is alienating, hierarchical and often frightening. Although this vocabulary becomes second nature to its speakers, as professional jargon does in any industry, and is not necessarily wielded with divisive intent, its effects are often polarising. At a conference on health and narrative in Dublin in March, one of the speakers, an eminent and reflective physician, spoke of his experiences with patients whose clinical experiences left the feeling both unheard and uninformed, due not to the poor practice of their doctors, but to the chasm between their vocabularies; a doctor for whom the term tachycardia comes more readily than racing heart meets a patient cowed by fear and respect for the physician’s expertise, whose anxiety prevents him from articulating his unique experience of illness, and an important detail is lost in translation. Empathy is not, strictly speaking, the problem here: rather, it is the incompatibility of vocabularies. The virtue of reading in this case is not that it teaches us to empathise with a suffering patient (surely this should come naturally) but that it tunes our ears to other language, that it hears in halting and subjective phrases the translation of clinical markers, the found poetry of symptom and presentation.

Interestingly, the communication and incommunicability of pain is a problem that has occupied philosophers of language for centuries. Wittgenstein observed the unity of the self in the experience and expression of pain, while Rorty offered a materialist approach in Philosophy and the Mirror of Nature that privileges focusing on the event rather than the experience of pain, suggesting that we should say “my c-fibers are firing” rather than “I am in pain”. Leaving aside the fact that, as Ornstein points out, we rarely say “I am in pain” to express discomfort, and the fact that (according to Puccetti) “C-fiber activity is a poor candidate for identification with feeling pain”, Rorty’s pragmatic approach seems to come close to the ideal of communication between doctor and patient: we should be using the same language to describe the objective, material cause of a problem. This, of course, is not how the world works, as Rorty concludes. We operate in the context of multiple, imprecise languages. Because we cannot (as Wittgenstein realised) refine ambiguity out of communication, the problem of imperfect communication is an enduring and almost certainly permanent condition of medical practice. Narrative medicine offers the possibility that we might both expose medical practitioners to the many kinds of non-medical language used to describe pain and illness and introduce patients to some of the ways of recognising and articulating the operations of the body. If, in other words, we cannot all use the same language, narrative medicine might encourage points of linguistic and representational contact. It is easy to see the applications in mental health contexts, where a patient might describe anxiety, depression or other inarticulable forms of anguish by reference to existing narrative representations of this emotion; I have heard and read of cases in which the language of young adult novels including John Green’s The Fault in Our Stars and Suzanne Collins’ The Hunger Games Trilogy are used to discuss attributes of mental health issues in young patients. More broadly, the concept of bibliotherapy invites patients to take some control of their mental health through “prescribed” texts, and the potential of fiction and memoir as well as self-help literature in this practice is currently under investigation.

The complex relationship between language and the self is at its most fundamental when it comes to expressing and understanding the physical condition and operation of the human body. Far from abstract thought experiments, beard-scratching academic discussions of transhumanist futures and bloodless, mechanistic anatomy lessons, the human in the body aches and exults, meeting the world at a border that grows more blurred all the time, a liminal unspace characterised and created by self-narration. The authentic expression of embodied experience is of paramount importance to the writer of fiction and memoir, and the research that goes into the writing of illness is enormous. It seems clear that the perceived division between narrative and medicine is a false and foolish one, and that, as Gawande argues, if we thought more about the human along with the anatomical elements of medical care, our strained relationship with mortality might be somewhat eased.