What Seems to be the Trouble?

Stories in Illness and Healthcare

Trisha Greenhalgh, Merrill Goozner

• Publisher: CRC Press
• Year: 2017
• eBook ISBN: 9781315347240
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

This is published in association with the Nuffield Trust. There is a foreword By Sir Kenneth Calman Vice Chancellor, Durham University and former Chief Medical Officer. 'Excellent. [The book's] analytical and methodological approach is invaluable. It is a real privilege to listen to the stories of patients and their families, to hear details of personal events, comedies and tragedies, and to use the skills of listening and interpreting to make sense of the story. I have written elsewhere that the history of medicine is simply the re-classification of disease. Here are some new ways of classifying the issues with which we are faced in an effort to assist in the process of healing.' - Sir Kenneth Calman, in the Foreword.

Chapter One

---

Stories and illness

Vikram was born in June, June of 2002. Normal delivery, normal, no problems. That was in June, the last week of June. And around the mid-July, it was when we for the first time we felt that he wasn’t feeding very well. Now, when we say he wasn’t feeding very well, he used to take an awful long time to drink maybe 30 or 50 ml of normal milk, of SMA milk. He was on his mother’s milk as well, but he wasn’t doing very well on his mother’s milk either. He was taking a really long while to drink. We mentioned this to the health visitor and she said ‘that’s okay, that’s something, some babies do take long’. We also didn’t give it too much attention because [son’s name], that’s his older brother, he was a fussy eater, he was a fussy drinker and he still is. So we thought, possibly Vikram is also like that.

But eventually it did become a problem in that he didn’t get enough milk with that, in that he wasn’t taking enough. We went to the GP a few times but nothing really happened. And then we also realised that he was coughing more than normal. And it wasn’t a normal cough. So we mentioned this again, again they said it was something common, go away. And one other thing that we noticed at that time was that the back of his head when he was sleeping was getting all wet. Wet with sweat and his pillow was getting all wet, soggy. So we again mentioned this to the GP when we went and he said that was something that would go away. But nothing really happened.

Then on the 23 September, that was the day he was actually diagnosed, and on that day, that morning really we noticed he was coughing very bad. And this cough was much different than the cough that he’d had all along. And it was quite bad and it was not a normal cough, really bad. So we took him to the GP and we said ‘please listen to what is, see what his problem is’, and then the GP said ‘1 hear a murmur in his heart, can you go to the hospital?’ And they wanted us to go to the hospital. We went there and we were there all day and towards the end of the day they said that they suspected a hole in the heart which is the VSD [ventricular septal defect].

Vikram’s father, Database of Individual Patient Experience

www.dipex.org.uk

In one of the great works of literary analysis, Poetics, Aristotle proposed that a story (narrative)¹ has a number of defining characteristics, including chronology (the unfolding of events and actions over time), characters (people of greater or lesser virtue who take action and/or respond to the actions of others), context (the local and wider world in which the characters enact their business), emplotment (the rhetorical juxtaposition of events and actions to evoke meaning, motive and causality), and trouble (peripeteia – a breach from the expected, as in surprise or ‘twist in the plot’) (Aristotle, 1996b).

Chronology – the time dimension of narrative – is not merely the date-stamping of events. Philosopher Paul Ricoeur has been keen to emphasise the difference between cosmic time (measured by clocks, calendars and, ultimately, the movement of the planetary bodies) and ‘event time’ (measured by the significant happenings in a personal story as the narrator chooses to tell it). An interpreter told of a consultation with the refugee mother of a 16-year-old African boy with suspected psychosis. The psychiatrist asked ‘How long has he been behaving like this?’, to which the reply came ‘Since he saw me gang-raped’. The mother’s response, given in event time, provided infinitely more useful information about the boy’s illness than a response expressed in cosmic time. Indeed, for Ricoeur, the chronology of narrative emerges from the interface between cosmic time (which has common significance for all of us) and event time (which is particular to each of us) – as in ‘Vikram was born [event time] in June [cosmic time]’.

Trouble (Vikram’s illness, the gang-rape) is the raw material from which plot is woven. Until there is a breach in the humdrum of everyday life, from what we expected to happen (and from what does happen, day in, day out), there is no story (Bruner, 1986). In the illness narrative, the focus of trouble is death, disability, disfigurement, distress, intractable pain, loss of freedom, or social stigma. The essence of the illness narrative is how well or how badly health professionals, caregivers and patients evade or face up to these adversities – and this, of course, depends on their character. Heroes are made when individuals tackle their own illness-related troubles or step in (courageously, determinedly, selflessly) to help others out of theirs. The villain is he who maliciously exacerbates trouble, or she whose slothful inaction delays restitution. As Aristotle perceptively pointed out, most people are neither exceptionally virtuous nor wholly wicked. Rather, ‘trouble’ will bring out the best – or the worst – in an otherwise unremarkable individual.

Emplotment is the use of literary devices to align events and link them through the purposeful actions of characters, thereby getting our heroes and villains in and out of trouble, and to show (at least implicitly) whose fault it all was. Trouble, and the response to it, is conveyed through literary tropes such as repetition, metaphor, irony, surprise, and so on.² There may be a period of suspense in which we, the audience, do not know how bad the impact of the trouble will be (the ‘cliffhanger’ – what one writer (Mattingly, 1998) has described as ‘the emotionally charged moment of not-knowing’). But as Aristotle himself made clear, dramatic suspense is often a blunt instrument in the literary world, and a good plot is usually achieved through subtler tropes (Aristotle, 1996b).

In the excerpt at the beginning of this chapter, for example, Vikram’s father uses the word ‘normal’ six times – to refer variously to his son’s birth, his first few minutes of life, the milk he was fed, and the nature and frequency of his early cough. As the story unfolds, expressions depicting Vikram as not-ill (‘normal’, ‘common’, ‘okay’, comparable to his not-ill brother) gradually give way to those depicting Vikram as ill (‘not normal’, ‘really bad’, ‘his problem’), until it becomes clear that a family catastrophe (the diagnosis of Vikram’s major heart defect) is unavoidable – a state of affairs that Aristotle called recognition (anagnorisis – the change from ignorance to knowledge; the ‘aha’ moment in the story). But even at the outset, there is a hint of concern – the seeds of trouble. As we read the story fragment, we are repeatedly and rhetorically pulled between ‘Vikram as not-ill’ and ‘Vikram as ill’, and in this way the narrator conveys something of the anxiety and confusion that he and his wife felt before the definitive diagnosis was made.

Aristotle described a number of genres for plots in ancient Greece – chiefly tragedy, comedy and epic. Most Hollywood plots can be classified as adventure (the good guy overcomes trouble to win a reward), romance (the good guy gets the girl), irony (the self-styled hero is exposed as a fool) or melodrama (a charged battle between good and evil, usually with a climactic battle towards the end). Arthur Frank, a professor of sociology who has written movingly about his own serious illnesses (Frank, 1991, 1995), divides illness narratives into four broad genres:

• restitution (the doctor-hero accurately diagnoses and treats the illness and/or the patient-hero successfully navigates a complex system of care to achieve the desired cure)
• tragedy (the doctor-hero does his or her best but the patient nevertheless succumbs – or, perhaps, the patient-hero struggles unsuccessfully to survive and be heard in the face of medical incompetence or insensitivity)
• quest (the patient-hero embarks on a journey to find meaning and purpose in his or her incurable illness)
• chaos (the story is incoherent, unsatisfying, and does not make sense) (Frank, 1995).

Vikram’s father’s narrative, which has begun as tragedy, could yet develop into either restitution (if his son’s heart condition is successfully treated) or a more profound tragedy (if it isn’t). The use of comedy in illness narratives is surprisingly common, especially when people are describing a brush with an inefficient healthcare system (‘they said “We’re wheeling you down for your operation, Mr Brown, as we’ve finally found your notes”, and I said, “My name’s Smith actually; Brown died in the night” ‘). The use of humorous tropes sublimates the anxiety about a ‘near-miss’ medical mishap, and also effectively highlights the absurdity of disorganisation and staff indifference when human life hangs in the balance.

Context is the concrete here-and-now of the story being told. A parent’s narrative about his infant with ventricular septal defect isn’t about congenital heart disease in general, but about this family living in this house, at this time, and coping – or failing to cope – with this child, cared for by this medical system. Illness is the trouble that throws a spanner in the works – but in order to understand the illness, we need also to understand the ‘works’ into which the spanner is thrown.

‘central difficulty with clinical renderings of patient sufferings is that in their abstractness, the world of the patient is left out. This world is above all a practical and moral one in which patients have life projects and everyday concerns, things ‘at stake’. What comes to be ‘at stake’ for any individual depends, in part, on the local moral world the patient inhabits. Illness . . . creates a ‘resistance’ which hinders or prevents the sufferer from carrying out plans and projects.’

(Mattingly, 1998)

There is another important dimension to context. All narratives, although on one level personal and specific, are on another level a reflection of a particular society with a particular set of norms and values. For example, Vikram’s father’s story about his son’s delayed diagnosis is also a story about the responsibility of the GP as gatekeeper to specialist care. In a different healthcare system in a different country, Vikram would have been taken directly to a paediatrician. In yet another country, his first encounter might have been with a witch doctor. Those of us who work as GPs in the UK face a huge challenge – to detect early signs of serious illness when it presents non-specifically (that is, with symptoms that also occur very commonly in not-ill patients).³

Illness narratives convey important cultural messages about appropriate social roles (how should a good doctor, a good family member or a good citizen behave towards a person with this sort of illness?) and about what to do in particular circumstances (for example, after childbirth, or when newly diagnosed with epilepsy). Katherine Montgomery Hunter, a professor of literature who spent many years doing fieldwork in a hospital, has demonstrated that the ritualistic exchange of stories by doctors in the ‘grand round’ is a critical way of passing on both scientific knowledge and professional norms and values (Hunter, 1991), a theme to which I shall return in Chapter Six (Stories and ethics).

The academic literature on narrative contains a number of different viewpoints on what narrative is. Consider, for example, three contrasting views:

1. The referential (mimetic) perspective. Narrative (storytelling) is a person’s report on what happened. In the words of sociolinguist William Labov, whose narrative-based research from the 1950s is still widely cited, narrative is ‘the recapitulation of past experience’ by means of an account consisting of ‘at least two past tense event clauses where the order of the clauses represents the order of events’ (Labov, 1982). The referential perspective is considered by many academics to be somewhat outdated, but it is still very much part of the medical tradition – the doctor or nurse ‘takes a history’ (i.e. asks questions of the patient and then writes down the ‘facts’). Anthropologists have demonstrated that medical students get progressively less adept at capturing the key elements of a person’s illness narrative as they progress from Year 1 to Year 3 of their clinical medical training (Good, 1994). This is not to say that they get worse at recording the ‘facts’, but (perhaps) that their pursuit of a faithful representation of events suppresses key literary elements (such as a patient’s choice of metaphor) that could inform a diagnosis or therapeutic choice, and it also makes them less able to contribute to a transformative telling (see below).
2. The transformative (anti-mimetic) perspective. Narrative does not merely report what happened, but in some way it also changes it. Most importantly, an autobiographical narrative does not merely describe the self – it creates that self. In Vikram’s father’s narrative of the trips to and from the primary healthcare team, Vikram is presented as a victim (vulnerable and helpless as he is in the face of medical reassurances that will be revisited in retrospect), and he himself is presented as a devoted father who becomes a hero through his dogged insistence that his child must be re-examined.
   Many writers have emphasised the critical importance of storytelling in the creation of identity – we tell stories about ourselves (and others like us) in order to affirm, and sometimes to change, who we are (Bruner, 1990;Riessman, 1990;Mishler, 1999;Holstein & Gubrium, 2000). The illness narrative not only describes the experience of suffering and depicts efforts to overcome or make sense of it – it also reframes or reaffirms the narrator’s identity (Kleinmann, 1988; Riessman, 1990; Mattingly & Garro, 2000). I shall discuss this theme in more detail in Chapter Two (Stories and healing).
3. The performative perspective. Narrative is not merely a looking back at action, but is itself an action. For example, the illness narrative might be viewed as a play enacted on the ‘stage’ of the consulting room (a performative narrative) – a theme explored particularly in the fieldwork and theoretical approach of US anthropologist Cheryl Mattingly (Mattingly, 1998). The notion of performative narrative was also used by Erving Goffman in his seminal work on the construction of the self. Social actors, he claimed, stage performances of desirable selves to preserve face in situations of difficulty, such as chronic illness. Talk is not primarily about giving information to a recipient, but about the staging of dramas to an audience (Goffman, 1981). Those interested in the performative framing of narrative should also see Victor Turner’s work on social performance (Turner, 1986) and Clifford Geertz’s discussion of action as text (Geertz, 1988). In Chapter Four (Stories and organisations) I apply the concept of performative narrative to the challenge of organisational change, rejecting mechanical plan-do-study-act cycles in favour of the more enticing metaphor of social drama.

Clinicians who first learned to evaluate medical texts according to the rules of evidence-based practice (in which all written sources are classified according to a strict quality hierarchy) often hold the view that nothing ranks below story – especially the raw, unverified narrative of the patient’s own words – in the hierarchy of evidence. Such individuals, even those who resist this hierarchy, often seek a comparable set of criteria to check the ‘worth’ of an illness narrative. I have already argued that narrative truth is fundamentally different from scientific truth, but where does this leave us in practice? A number of authors have attempted to address the quality of the illness narrative from a theoretical standpoint, and several potential criteria (listed below) are worth considering further. The story told by Vikram’s father on page 3 was first collected as part of a research project (see www.dipex.org.uk), and was certainly never intended to be evaluated as a piece of literature. Nevertheless, it meets a number of criteria of a ‘good story’, which are listed below.

Aesthetic appeal – i.e. the story is pleasing to hear and recount, and demonstrates a kind of internal harmony. Aristotle in ancient times and philosopher Kenneth Burke in the twentieth century (among many others) emphasised the importance of achieving a balance between the different elements in the story (characters, plot, context, actions, trouble, and so on) (Burke, 1945; Aristotle, 1996b). The artistic merit of a story is a central preoccupation of literary criticism and mostly beyond the scope of this book, but as Launer suggests, we can all spot a good story in clinical practice, just as we can in the arts (Launer, 2002). The patient who makes a minor illness into a melodrama induces less sympathy than they might otherwise have gained. One who inserts too much detail will be viewed as a ‘poor historian’ (and in medicine’s rather shameful past, might have been formally labelled as such on the front of their medic...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Contents
• Foreword
• Foreword
• Preface
• The Nuffield Trust
• List of Trustees
• About the author
• Acknowledgements
• Chapter One Stories and illness
• Chapter Two Stories and healing
• Chapter Three Stories and learning
• Chapter Four Stories and organisations
• Chapter Five Stories and research
• Chapter Six Stories and ethics
• References
• Index