Downloaded from http://mh.bmj.com/ on November 19, 2015 - Published by group.bmj.com

JMH Online First, published on July 15, 2015 as 10.1136/medhum-2015-010669 Original article

Charting Phelan’s ‘To Suffer a Sea Change’ Megan Winkelman,1 Jacqueline Ng,2 Audrey Shafer3 ▸ Additional material is published online only. To view please visit the journal online (http://dx.doi.org/10.1136/ medhum-2015-010669) 1

Berkeley, California, USA The Gavin Herbert Eye Institute, University of California, Irvine, California, USA 3 Department of Anesthesiology, Perioperative and Pain Medicine, Veterans Affairs Palo Alto Health Care System and Stanford University School of Medicine, Palo Alto, California, USA 2

Correspondence to Megan Winkelman, c/o Audrey Shafer, Department of Anesthesiology, Perioperative and Pain Medicine, 3801 Miranda Avenue, Anesthesia 112A, Palo Alto, CA 94304, USA; megan.winkelman@alumni. stanford.edu Accepted 8 June 2015

To cite: Winkelman M, Ng J, Shafer A. Med Humanit Published Online First: [ please include Day Month Year] doi:10.1136/ medhum-2015-010669

ABSTRACT Physicians and healthcare workers usually perceive their medical record entries as documentation rather than construction. In the following article, we extract a medical record from a narrative, Peggy Phelan’s pathography of glaucoma, ‘To Suffer a Sea Change’. From information about encounters described by Phelan, an ophthalmologist reconstructs progress notes similar to those that would be key to a glaucoma patient’s medical record. Rather than condemning the arcane pointilism of the medical record as a poverty of language, or isolating the pathography as an academic text, we hope to instead appreciate what their collaborative dialogue offers the study of disease. While the points of divergence between these texts will demonstrate failures in communication, they will also unearth an enriched dialogue.

The medical record is a complex admixture of numbers, words and images; an entry typically includes free text and data, with sections such as assessment and plan. Historically, medical records began as case reports, for example, a papyrus dating to 1600 BCE contains a surgical case report. Other case histories from Hippocrates (5th to 4th c. BCE) and prominent mediaeval Islamic physicians (9th to 10th c.) promoted the tradition of case histories as didactic tools.1 Physician notes on patients in casebooks or diaries as part of medical care itself did not occur regularly in Western medicine until the 18th c.; it was not until the turn of the 20th c. that hospital records began to play a part in patient care. Assigning a new patient a clinic number in order to collect all of a patient’s disparate records in a chart began in 1907 at the Mayo Clinic.2 A revolution in the technology of charting occurred in this century, but even before the clickboxes and drop down menus of the electronic medical record, the medical chart became circumscribed by formulaic, shorthand-driven, abbreviation-packed and acronym-laden jargon. Certainly some physician specialties, such as psychiatry, record a great amount of the patient’s personal and social details in notes; however, large swaths of many physicians’—and increasingly nurses’—chart entries for any given patient are nearly interchangeable with entries for other patients. Ever cognizant of the legal nature of the document, healthcare professionals compose, date, time and sign entries to provide a chronological history of a particular patient’s health issues, procedures, medications and other items deemed pertinent to the person’s state of well-being. Besides the many rules and laws about privacy and disclosure, other factors, such as fear about implying culpability or error and the hurried pace while charting contribute to the bland blend that constitutes much of health professionals’ entries in the

chart. The result is more than merely ‘bland’; such reductive brevity can ultimately undermine the collective reality of the patients and their conditions. To find methods for better approximating the patient’s well-being, scholars struggle to deepen and challenge the perception and use of the medical record. ‘Charting the Chart—An Exercise in Interpretation(s)’ expands the medical record of a woman in rehabilitation for a stroke. Direct entries follow common charting methods. In ‘Charting the Chart’, five experts from different professional backgrounds each deconstruct the same medical record to “describe the ways in which Mrs. R and other patients are decontextualized to fit the science, practice, and structures of discourse in the separate health professions.”3 When narrative theory is applied to the medical record, a reductionism is revealed, drawing attention to a gaping absence where the patient voice could be: “A good story… allows the reader to gain insight into a character’s personality and typical ways of thinking, behaving, and relating to others. Our understanding of the characters in this story is limited, at best”.3 A narrative lens demands that the text provide motive and character development, an investigation into who a character is, why they behave a certain way and how they change over time, requirements that the traditional medical record cannot satisfy. The practical consequences of this loss become apparent when a medical team makes life-changing decisions without understanding what the patient wants or believes about their care, a reality “disturbing in its consequences for both narrative and praxis”.3 Faced with these consequences, medical practitioners have begun experimenting with strategies that reintroduce the patient’s humanity to the practice of medicine, by emphasising the importance of the patient’s subjective experience and the shortcomings of medicine’s presumed objectivity. Some practitioners have even proposed that if no space for the patient’s story exists in the medical record, perhaps a new home may be discovered in the physician’s imagination. Such work extends from Kleinman’s discourse on the distinctions between the illness experience and disease as diagnosis.4 In ‘Eva’s Stories: Recognizing the Poverty of the Medical Case History’, Richard Sobel asks medical students to write case histories from literary works.5 He demonstrates this method by deriving a medical case history of a dying woman, Eva, from fiction, and then comparing his chart with the novelist’s narrative of this woman’s life. Sobel explains that “just as the medical resident would have filtered out Eva’s individuality in translating her story of her illness into his impoverished medical story of E.K.’s disease, I have abstracted (with some poetic license here and there) Eva’s medical ‘facts’ from Tillie Olsen’s short story ‘Tell Me a Riddle’”.5 With this

Winkelman M, et al. Med Humanit 2015;0:1–7. doi:10.1136/medhum-2015-010669

Copyright Article author (or their employer) 2015. Produced by BMJ Publishing Group Ltd under licence.

1

Downloaded from http://mh.bmj.com/ on November 19, 2015 - Published by group.bmj.com

Original article exercise, Sobel inverts the proposals of doctors like William Donnelly who argued that “medical students and physicians will construct more balanced accounts of human illness once they envision these accounts as ‘story,’ a form of narrative that traditionally accesses subjective experience as well as objective events”.6 The work of translating between medical practitioner and patient languages is a new tool for developing a broader and potentially more empathetic dialogue, reminding us that neither is fully objective or subjective. In the following article, we, like Sobel, extract a medical record from a narrative, though our story, ‘To Suffer a Sea Change’ by Peggy Phelan, is a pathography, not a work of fiction. Peggy Phelan, currently a professor of Drama and English at Stanford, writes about her first symptoms of glaucoma at 23, the disease’s progression over 5 years and finally her surgery. Her ophthalmologist, Dr George Spaeth, a leading glaucoma specialist whose many accomplishments included standardising a grading scale for the disease (see box 1), was deeply interested in Phelan’s literature studies. Phelan’s first person account reflects her academic stance: she examines her disease in the context of modern and mythical literature, history and art, searching for meaning in her pain, as well as the philosophical underpinnings supporting our understanding of vision.7 From information about encounters described in ‘To Suffer a Sea Change’, one of us, an ophthalmologist (JN), has reconstructed progress notes similar to those key to a glaucoma patient’s medical record. Although authenticity and truth are attributes routinely assigned by medical personnel to the medical record, we call those assumptions into question in this paper by the translation of a memoir into a necessarily fictionalised medical record. All physician specialties have their own set of abbreviations and usual formats; local dialects, training quirks and individual tastes provide some variability. However, of all the medical specialties, it could be argued that the ophthalmologist’s notes are the most arcane and exclusionary. Beyond ‘OD,’ ‘OS’ and ‘OU’ for right, left and both eyes, most non-eye specialists have a difficult time deciphering ophthalmological visit notes. The chief complaint section of a retina note can have over 20 letters, all in acronyms, with not one formed word. To a non-specialist, this may appear to be arcane pointilism or a poverty of language; to a specialist, however, it is rich text. Rather than read Phelan’s autobiographical pathography as an academic text in isolation, we hope to instead appreciate what a collaborative dialogue between the medical chart and the essay offers the study of disease. While points of divergence between these texts will demonstrate failures in communication, they will also unearth an enriched dialogue. From a side-by-side reading emerge new arenas for a more complete translation between doctor and patient; together the pathography and its corresponding medical record offer a key opportunity to reflect on contemporary ophthalmology, each revealing the arrows of time and locality, and echoes of their specific medical and historical context. Finally, due to the esoteric nature of signifiers in both ophthalmology and also in the humanities, our chosen analysis offers one of the widest possible divergences between patient and doctor texts. In ophthalmology’s especially ciphered language, and Phelan’s arcane literary references, the complex translation of patient experience with eye disease takes on an even starker contrast. The New Patient Consultation and two progress notes, labelled Return Visit—Urgent and Return Visit, (see online supplementary appendices A–C), describe Phelan’s visits to her ophthalmologist Dr Spaeth (see box 1 for explanations of 2

abbreviations used in the online supplementary appendices). These entries translate Phelan’s described experiences into the language of an ophthalmologist’s primary text, building the chart using Phelan’s descriptions of her appointments. When Phelan’s essay and Ng’s notes are placed side by side, it becomes clear that both texts endured their own selective editing, either for the sake of the story or for the sake of the diagnostician. The first progress note (see online supplementary appendix B) summarises an urgent return visit because of a “sudden painless superior VF loss for 15 min OU while walking to subway.” Such an entry bluntly summarises Phelan’s evocative depiction: In January of 1988, on a New York subway, I found my field of vision radically narrowed. By the time the subway reached Penn Station, I could see only my right foot and about a five-meter circle from the floor to my kneecap. Everything else was gone. I felt as if I had stumbled inside an enormous rolling stereo speaker and had become trapped in a very small, dark, and unbelievably loud mobile world.7

The scene is initially grounded in ‘when and where’, with the protagonist as the subject (“I found my field…”), creating a sense of control that is shattered sentence by sentence as the paragraph’s description continues. By ‘Everything else was gone’ the loss has been foreshadowed by the rising tension Phelan creates as she describes her narrowing field of view while the subway progresses on its route. The reader’s anxiety has risen along with Phelan’s. Further in the same progress note is: “Allergies/Drug Intolerances: Betagen (Eye irritation, bradycardia/heart block).” This fragment captures a narrow slice of Phelan’s lengthier, more involved and emotive description: Those fourteen days were miserable. The Betagen burnt going into my eye and it made me excessively sleepy. Twice, while watching television, I felt my heart stop, pause like a child about to cross the street who looks with exaggerated caution to the left and to the right before continuing…To avoid the burning (Betagen has a hydrochloric base), I had unconsciously changed the way I took my drops. I had found the duct in the bottom of my eye that leads to my nose, and after two weeks my nose had become infected.7

Similarly, in the progress note, Raynaud disease is mentioned but the manifestation is not described. In her essay, Phelan uses the diagnostic name but also details how the scientific explanation for the condition feels in her body and its impact on her psychology, writing: I continued to feel lightheaded and cold, and I developed Raynaud’s in my feet—a circulation problem which slows the blood’s passage to the extremities, first causing numbness and coldness for long periods and then burning and itching from a sudden rush of blood…My hands were sweating; my mouth was dry; my feet were freezing; I was endlessly thirsty. Instead of feeling “laid back,” I felt dried out, passionless, exhausted, empty. And so I spent another two years.7

Phelan seems to struggle mostly with the way her medications alter her daily symptoms. The medical chart has no shorthand for recording that Phelan feels ‘passionless’, but does offer different insights: ‘Inferior early undermining, superior erosion’ indicate, to an ophthalmologist, that neural tissue is being lost by glaucoma damage. A specialist can also interpret the increasing ‘C:D’ ratio as disease progression. The difference between the medical and Phelan’s accounts suggests what kinds of differences might have existed between Spaeth’s medical record and Phelan’s perspective. Whereas Phelan was coping with her Winkelman M, et al. Med Humanit 2015;0:1–7. doi:10.1136/medhum-2015-010669

Downloaded from http://mh.bmj.com/ on November 19, 2015 - Published by group.bmj.com

Original article Box 1 Medical record abbreviations Medical record sections (in order): CC, chief complaint; HPI, history of present illness; PMH/PSH, past medical/surgical history; POH, past ocular history; FHx, family history; SHx, social history; ROS, review of systems; A/P, assessment/plan General medical terms A&O, alert and oriented BID, twice a day BP, blood pressure CPM, continue present management ETOH, alcohol F, female Fu, follow-up Gtts, drops HA, headache H/o, history of HR, heart rate IVDU, intravenous drug use MI, myocardial infarction MMC, mitomycin C NKDA, no known drug allergies Occ, occasional OR, operating room PARQ, procedures, alternatives, risks, questions PCP, primary care physician Pre-op, requirements needed prior to surgery, including health clearance, paperwork, perioperative instructions Prn, as needed P/w, presents with RTC, return to clinic Yo, year old Ophthalmological general terms IOP, intraocular pressure OD, right eye ON, optic nerve OS, left eye OU, both eyes POAG, primary open-angle glaucoma OHTN, ocular hypertension Trab, trabeculectomy VF, visual field Exam APD, afferent pupillary defect CCT, central corneal thickness C:D, cup to disk ratio CVF, confrontation visual field DFE, dilated fundus exam Gonio, gonioscopy; D40f2+=based on Spaeth’s grading system of angle with D=open to ciliary body; 40=40° angle of anterior chamber; f=flat iris approach; 2+=mild pigment in angle HVF, Humphrey visual field; MD=mean deviation with patient’s results compared with those expected from the age-matched normative database MRx, manifest refraction NT, not tested Ortho, orthotropic/orthophoric SLE, slit lamp exam; W&q, white & quiet; AC, anterior chamber; D&q, deep & quiet; R&r, round & reactive SVP, spontaneous venous pulsations

Winkelman M, et al. Med Humanit 2015;0:1–7. doi:10.1136/medhum-2015-010669

VAsc, visual acuity without correction; VAcc, visual acuity with correction; VAphsc, visual acuity without correction using pinhole WNL, within normal limits

medication and episodes of vision pain or loss, Spaeth likely tracked her worsening stats. This intuition is affirmed by Phelan’s description of their conversation about whether to undergo surgery. Spaeth recommends this surgery but Phelan recalls: I resisted his suggestion, surgery was too radical, and my condition, while unpleasant in many ways, was not intolerable. In other words, I was stalling—trying to conjure a miracle cure, a scientific leap, an alchemical elixir, the philosopher’s stone. Cutting my eye seemed so much worse than learning to live under the physiological slowdown of Timoptic and the sudden rush of pain.6

In this telling, Phelan draws a self-deprecating parallel between her personal hope for a non-invasive cure and man’s mythic quests for eternal life. Since she is writing in the aftermath of these events, rather than in the moment of illness, we cannot know whether she possessed this same perspective in the throws of her disease. Still, her decision to express her resistance to medical advice, particularly in the context of popular mythology, is powerfully relatable. She appeals to a common human response to ageing and illness, the frantic desire to return to health as instantly and unbelievably as that health seemed to have been snatched away. Here Phelan recognises the illogic of expecting some ‘miracle cure’, while also deftly capturing the innate resistance to invasive interventions felt by many patients, as well as the motivations orchestrating such defiance. When another extreme episode of pain and blindness forces her to seek care at the hospital, “Spaeth informed [her] that he was no longer suggesting that [she] have the surgery, but was telling [her] that [she] should”.6 With this verdict hanging over her, Phelan travels to France to ponder her decision as she studied Reims’ cathedrals, and Chagall’s stained glass windows. Phelan researches her surgery using the context she works with as a humanities scholar: investigating art, culture and history of man’s psychological relationship with vision and with cutting the eye. Her response to the recommendation that she undergo ocular surgery underscores the way that a patient’s personal history and tools used to make sense of the body can influence her medical decision making, a reckoning that may be ignored or misunderstood by a doctor. From Phelan’s return to Spaeth’s office, we have created Progress Note 2 (see online supplementary appendix C): “1 year passed. Vision stable, occ eye pain unchanged. Stable on drops, still fatigue and Raynaud symptoms. Occ migraine with aura, followed by PCP. Wants to discuss possible surgery.” Interestingly, the first half of the note indicates no significant difference in Phelan’s condition. Without her essay, a reader would not be able to understand her changed attitude towards surgery. This chart note does not explain why a patient acts the way she does, though understanding patient behaviour, for example, in explaining underlying compliance or noncompliance with medical advice, is an essential part of doctoring. The end of the progress note reads: “Discussed at length option for trab + MMC. Patient would like to proceed with OS

3

Downloaded from http://mh.bmj.com/ on November 19, 2015 - Published by group.bmj.com

Original article first to prevent further deterioration in better eye…Scheduler to contact for pre-op and OR date.” As this note is authored from the physician’s perspective, it fails to capture key power dynamics between doctor and patient, for example, that Phelan interpreted the interaction as Spaeth essentially ordering her to have the surgery. The note doesn’t say how the surgery decision was made, only that the patient ‘would like to proceed’. Even after the surgery is set in motion, Phelan’s writing reveals further evolutions in her thinking about her self and her disease, as evidenced here: “By the time December arrived, I was positively eager to have the surgery finished, if only to have a ‘real’ event to oppose the psychological phantoms I was living with”.7 Her relationship with glaucoma and with her eye surgery is not limited to her hospital or clinic encounters; instead ‘the psychological phantoms’ that prey on her self-doubt about cutting into her eye haunt every part of her life. Some discrepancies seem more significant than others. For example, in the taking of her family history Phelan says, “I remember Aunt Alice back in Ireland who had an eye operation —for glaucoma, I think, but I’m not certain”.7 Later, as Phelan digs through her family’s medical history in the hopes of finding clues about her condition she writes, “Aunt Alice has been absorbed into my family’s version of Irish myth: no two accounts of her eye operation concur, and she herself has died”.7 Our constructed record provides a blunt interpretation of this vague recollection as family history ‘FHx’ of glaucoma (see online supplementary appendix A). It seems unlikely that this summary would have overly influenced the course of Phelan’s treatment regimen, but the attribution also seems an assumption. The loss that occurs in this conversion seems important in a broader sense, prompting the question of when reductionism in the medical record is appropriate and effective, and when it diminishes the quality of patient care. Perhaps part of the loss is that the medical record is not designed to reflect uncertainty, as about Aunt Alice. Despite an inevitable lacuna, the patient narrative and its corresponding medical record share a common challenge: both must be at once specific enough to honour the illness’s place in an individual’s story, and also relatable enough to stay situated in the context of a broader disease and its population-wide presence. Again and again Phelan yokes together the private relationship she has to her glaucoma and the political ramifications of what parts of the illness experience that can or can’t be captured in words. She writes, “Words walk to the threshold but will not enter the rooms of the body where pain runs wild. Deserted by words, pain lacks temporal sequence or spatial order: it makes a sound that syntax cannot carry”.7 Phelan describes the ways language fails to contain illness (a common theme in patient narratives) while her prose remains personal, couched in specific experiences like losing her peripheral vision on the subway. Still Phelan’s self is inextricable from her description of the nature of pain. Her eloquence, her choice in diction and metaphor, steep the sentence in her special subjectivity. The insertion of the self is sometimes explicit: “When I was twenty-three, I did not know the borders or language of my body’s country. An American student pursuing a doctorate in English literature, I planned to dope out how words worked: to learn what burdens they could carry, which ones they refused to shoulder”.7 Phelan learns language’s limitations not by studying but by living, implying that doctors may not master the practice of medicine without recognising the moments where medical expertise loses its potency. Neither a medical text nor a patient account can shoulder the full truth of an illness. However, when a patient’s voice is as

This excerpt is exceptional in its location of agency and its self-deprecating humour. Phelan’s ‘bizarre physics’ contorts to create a situation in which she causes the pain in her eye. Her narrative defies science and logic to make her culpable of her pain. What motivates this move is a desire to reason with the unreasonable, which is her body’s betrayal. Shouldering the blame for disease seems preferable to accepting the body’s random, uncontrollable missteps. Phelan further probes the intersection between cultural expectations of the body and her experience living within its malfunctions. She writes, “Of course the body has means and is meaningful: I know pleasure makes it fluent; pain makes it speechless”.7 Whereas before she projected her own meanings on the body’s system of causality, here she confronts inherited and lived notions of ‘the body’. Deconstructing this sentence in depth reveals much about expectations the author has absorbed by or projected on the body. ‘Of course’ implies the body is an obvious arena for communication and exchange, and choosing the metaphor of speech (‘fluent’ vs ‘speechless’) subtly subverts the dichotomy between body and self. Typically the ‘self ’ speaks, using the body, rather than the body’s physicality directing expression of the self. This amalgam is reinforced by the sentence construction: the body’s means and its meanings, again traditionally distinct attributes, are playfully intertwined. Then in the second clause the body and the self are split again. ‘I know”’emphasises Phelan’s identity constructed apart from the body, and positions the self even as a master of the body, claiming dominance by knowledge. Yet such dominance is both posited and also undermined in the same breath. Choosing ‘it’ as the subject representing what is presumed to be Phelan’s body has consequences, namely that Phelan’s insight about pleasure and pain is abstracted to a single, universal body, thereby deepening the dualism of self and body. Thus in one sentence the reader experiences the body as the self as well as the body as an outsider, exemplifying the complex relationship with the body developed throughout the essay. Doctors do not invoke ‘bizarre physics’, as Phelan does, to explain the cause of a symptom, but they also cannot evoke the emotional milieu of living with disease. Clearly it takes a skilled communicator to effectively share the terrifying experience of losing one’s health. This efficacy seems rooted in writing not while inside the experience but afterwards, in retrospect. Woolf addresses this paradox in ‘On Being Ill’, writing: “Illness makes us disinclined for the long campaigns that prose exacts”.8 Phelan’s paragraph demonstrates why clearer communication may happen in recovery. For example, the powerful description that walking the subway is like stumbling inside a stereo is likely one that took time to develop after the actual experience: during the episode one would assume she would have been too consumed by pain and fear to wax poetic. As this essay was

4

Winkelman M, et al. Med Humanit 2015;0:1–7. doi:10.1136/medhum-2015-010669

strong as Phelan’s, the sharing of one patient narrative conjures up the ghosts of all absent patient voices past by addressing the erasure of patients’ voices, experience and agency. Her story is never more accessible than when she evokes the confusion and vulnerability of an unexpected health episode. She writes: Zooming around a bend, I feel a staggering push behind my right eye. The right upper half of my face is on fire: I am certain that my eye has fallen out of its socket and is bouncing around somewhere on the mat of my mother’s Honda…Theories of bizarre physics swarm around my mind: could it be that by pushing the accelerator with my foot I’ve unleashed some kind of mechanical fury that has run up my body and propelled my eye out of its socket?.7

Downloaded from http://mh.bmj.com/ on November 19, 2015 - Published by group.bmj.com

Original article published in 1991 and tracks events occurring from 1983 to 1987, it seems safe to assume that the writing was done mostly after the events actually occurred. Additionally, Phelan herself suggests that the most effective story may not be the most literal: This is a story…recast in different tenses, of the progressive erosion of my eyes…The sequence matters but the tenses scramble. Pain lives in a perpetual present uncertain of sound’s location. Catching up to pain and leaving it behind are equally impossible, yet narrative sequence demands separations and forces a more or less arbitrary point to play the part of “origin.”7

Here Phelan acknowledges that she will employ narrativising and literary techniques to homogenise, distort and reconstruct a story of her glaucoma that will best register with her audience. Phelan’s decision to choose a ‘more or less arbitrary point’ to mark the beginning of her disease defies the scrambling effects of relentless pain, but also sacrifices the parts of her story that would confuse the linear progress of a traditional story. Frank notes that the telling of a past illness experience is frequently told with astounding clarity because the experience is felt as a current experience: ‘haunting the present’.9 Phelan’s narrative is ‘recast in different tenses’ both so the reader gets caught in that haunted moment, and also so Phelan can package her pain into a digestible narrative arc. Just as Phelan’s pathography presents a selective set of truths, so does the medical record. Doctors may complain that the internet breeds hypochondriacs with freshly researched symptoms and diagnoses, but the way medicine frames a set of physical experiences also alters communication about disease manifestations. It may be that the physical limitations of disease are not the only limitation to the expression of a condition’s experience. The assignment of a diagnosis has consequences beyond the clinic. Phelan writes, “Spaeth gave me the diagnosis ‘primary open-angle glaucoma suspect.’ I was immediately fond of the word suspect-not the thing itself, but not quite routine”.7 The patient is exposed to the language of healthcare without the context that a medical education, for example, would provide. At the same time, doctors may use this language while not understanding its other resonances that patients might proceed. The diagnostic label may have one set of meanings to a doctor and other, myriad meanings to a patient struggling to integrate the disease into identity. ‘Suspect’ is a routine word used without mystery in medicine; ‘x suspect’ or ‘suspect x’ means everything points to ‘x’ as diagnosis. But to Phelan, “Taking in the word allows me to postpone taking in the autobiographical ‘facts,’ which are rather baffling; they are too obscure, too immersed in other people’s lives and lies to grab hold of ”.7 Accepting a new narrative about who you are and what you will be able to do is an immense task that demands far more from a patient than simply hearing a diagnosis. In online supplementary appendix A, Assessment/Plan ‘A/P’, the major findings from the family history to the essential elements of the physical exam (note the telling lack of mention of the patient experience such as the patient’s pain) provide evidence that glaucoma is the diagnosis in less than a line of text. The standard omission of patient experience in the assessment contributes to the underlying message: the chart is the definitive representation and interpretation of the course of events that led to medical care. How a patient feels about their diagnosis has no routine place in the medical record. When, as in ‘Charting the Chart’, the patient acts against medical advice, the reasons for doing so are obscured by the record’s organisational limitations. The premise Winkelman M, et al. Med Humanit 2015;0:1–7. doi:10.1136/medhum-2015-010669

that a medical chart contains all pertinent information implies that anything not there is irrelevant or extraneous. Phelan’s essay challenges this stance. Her comments validate the importance of the many in-between moments, everything to and from the doctor’s office, that get little, if any, acknowledgement by medical professionals. If the doctor–patient encounter is seen as the patient telling the story of painful or otherwise uncomfortable or unusual experiences, the difficulty Phelan encounters while trying to process her illness experiences alone must be magnified when an additional party, the physician, is added to the exchange. Think back to Mrs R from ‘Charting the Chart’, the elderly, impoverished woman with a complicated family life and mercurial feelings regarding her own illness and treatment. Her chart told a multiauthored story, constructed anew by each professional. The article’s authors suggest possible avenues for better integrating Mrs R’s needs and perspective into her care, but Phelan’s narrative implies that even with a renowned writer’s perfect control and prime opportunity for sharing a story of illness much still goes unexpressed, or only acknowledged by way of mentioning its indescribable nature. Her speechless pain intimates that what patients don’t say may be as important as what they do. If we accept this premise of deficiency, doctors have the strange honour of encountering people telling what may be the most important story of their lives in their least fluent moments. In Phelan’s words, “My descriptions, the words I could summon into syntax, would be just as important to the ‘arrest’ as would the technology of ophthalmology…”.7 Story, she implies, is as powerful as treatment, but the capacity to understand the perspective from which the patient crafts their story is equally essential. Dr Spaeth’s character represents the physician who respects his patient’s authority, in the study of language as well as in the experience of her body. On the day of Phelan’s surgery, Spaeth greets her in French, and casually reminds her that he is mad at her for not sending him her essay critique on The Tempest. This distracts her from her frenzied fear: “all of this is like background music in the loud arena created by Sapeth’s admission”.7 Phelan writes, We continue to speak, and as we do I become more and more absorbed in the distortions and clarity of what I am able to see. By insisting on speaking, perhaps Spaeth helped me look for the thing I should have never seen. I had told him about The Tempest at least two years before; we never alluded to it again until this extraordinary morning.7

Spaeth relocates the power he has as the surgeon in the surgery theatre to his patient by creating a space for her authority in literature and performance studies. He is treating the most debilitating part of her experience of this disease, which is her fear of losing her self to the degradation of her body. In sharp contrast, Phelan reports that her other surgeon, Dr Brandt, “begins to quiz me with a fascinated urgency. He wants to know what I can see; he has never seen his work from the other side. My open eye is too tender, I don’t want to tell him”.7 Where Brandt invades the part of Phelan she feels most private to plunder for information, Spaeth asks that Phelan teach him what it means to understand the world from her particular place in it. Such a doctor heals by learning the language of the patient, rather than forcing translation. Interestingly, after her surgery and in the painful but manageable maintenance of her chronic condition, Phelan alters her assessment of pain’s communication from speechlessness to vocal but foreign: “The language of my body’s pain speaks in another tongue: hastier, less organized, hotter than sound”.7 5

Downloaded from http://mh.bmj.com/ on November 19, 2015 - Published by group.bmj.com

Original article Phelan does write about the physical sensations of glaucoma, but she does so with considerable care. Pain is not actually mute, but whispers in an unknown tongue, a pidgin language of experience and expression. Thus, Phelan extends and internalises Scarry’s exploration of the difficulty of expressing one’s pain to another person: for Phelan, the language of her own pain is foreign.10 Furthermore, it is little wonder that Phelan wrestles with writing her pain and its various manifestations, as pain is “an interdependent, inseparable, multidimensional union of the two elemental human forces… psyche (mind) and soma (body)”.10 In the medical record, however, under Chief Complaint, ‘CC’, pain is simply noted with few qualifiers (see online supplementary appendices A–C). Indeed, the term ‘chief complaint’ has been critiqued as demeaning to the patient’s voice; advocates of ‘CC’ as ‘chief concern’ have, however, not successfully changed this term.6 During her surgery, Phelan remains conscious, taking in her changing vision with only local anaesthesia. She recalls, “In my delirium I see how much I want to believe that there is a connection between the body and the self, between the holes in the words and the holes in seeing, between humming and syntactic sounds”.7 Here Phelan’s desire to bridge the gap between her identity and her body reveals the core trauma of illness, that to surrender to medicine requires an altered understanding of the self as limited by the body’s physiological workings, rather than the body as a tool obeying the self ’s commands. As in her initial visit to the ophthalmology wing, Phelan struggles to incorporate the pursuit of treatment with a long-held understanding of self, typically at one with the body as a healthy vessel. A tension exists between submitting to medicine, in the hopes that one’s flaws are fixable, and protecting the long-held dominion of the immutably powerful self from siege. Phelan summarises this tension, stating, “Technology wants to find the hole, the flaw, the place where I crack open. I want to be impermeable”.7 One imagines her Operative Report would dryly list, as for just about any glaucoma patient, preoperative and postoperative diagnoses, operation performed, medications and implants used, complications and final condition (eg, stable). After the horrific pain Phelan experiences while driving she sees her physician ( prior to Spaeth) but notes, “I cannot recite this story in an unknown doctor’s office. It sounds so contrived, so utterly dramatic. I say instead: ‘My eyes have been very painful lately. I think I may need eyeglasses’”.7 Here Phelan exposes the editing of the patient experience that takes place even before speaking to a physician. In response to this minor complaint the doctor “does some vision tests and reports that [she does not need eyeglasses]. Then, almost as an afterthought, he measures [her] intraocular pressure. The right eye is at 32, the left at 28. ([She] later discover that average pressure is 16.)”.7 In this case, the body speaks a truth that the patient conceals. In others, cultural norms and a lack of patient advocacy in translating experiences of illness to caretakers may impede treatment. Why, then, does this happen? These truncated, caveated, asterisked stories come into being because the experience of illness endangers the author’s sense of self, which is essential for guiding the narrative. Phelan writes, “Without vision, I felt I could not locate myself; I would never be able to persuade the law, in calm words, that I had a home somewhere my eyes could see. Where was this home? My body had exiled me, split me from myself. Science has a ‘truth’ to explain my temporary blindness. It’s logical, objective, and searingly inadequate”.7 Science’s ‘truth’ cannot account for the patient’s lived experiences, and without understanding those experiences, problems of communication and corresponding treatment multiply.

With this appreciation, we can begin to unpack the many translations that occur in every doctor–patient encounter. Kleinman argues that “Diagnosis is a thoroughly semiotic activity: an analysis of one symbol system followed by its translation into another”.4 Marshall and Bleakley examine a variety of translation issues and note a multitude of lost-in-translation concerns; for example, they believe: “Patients’ accounts are not necessarily trustworthy, and dialogue between doctor and patient is a process of negotiation of meanings”.12 Of course, physicians’ accounts can be fraught as well. Dr George Spaeth, Phelan’s glaucoma specialist, summarises this well by stating, ‘Vision is seeing the significance of what you see—more than just the ability to resolve objects’.13 Even when there is trust and respect between doctor and patient health decisions inevitably involve a bartering over ‘truth’, as is evidenced in Phelan’s writing about her conversations with Spaeth. Phelan’s truth is lived and intrinsically valid but medicine still must categorise her body’s changes in order to translocate the experience into the realm of science. She writes after her surgery:

6

Winkelman M, et al. Med Humanit 2015;0:1–7. doi:10.1136/medhum-2015-010669

My eye sits where it always has, above the cheek, below the brow. Pain’s present tense, endless tension, makes the story impossible to end. Conviction is impossible when the criminal roams from room to room. My story is finally the same as those of all the other patients; I understand the waiting room now. The only difference between me and them comes from the words I’ve suffered to find and the words I’ve suffered to flee. This ending, then, is merely the site of these words’ vanishing point.7

The personal illness narrative, existing both within and apart from the disease’s community, cannot be standardised. In this final paragraph, Phelan leaves readers grasping for more, for a thesis, for a conclusion, for a future; instead we are only left with the spectre of unending pain echoing in our ears as pressure builds in Phelan’s eyes. Perhaps the most important exchange amid the many translations of the medical record and the patient’s words is the recognition by doctor and patient alike that communication about the experience of health and illness is shaped not by merely biology, but by the dynamic and considerable forces of vocabulary, power and history. Contributors Each author of this article is able to identify which coauthors are responsible for specific other parts of the work, and have confidence in the integrity of the contributions of our coauthors. We have each made substantial contributions to the conception and design of the work, or the acquisition, analysis or interpretation of data. We have each contributed to drafting the work or revising it critically for important intellectual content. We each agree to be accountable for all aspects of the work and ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. Competing interests None declared. Provenance and peer review Not commissioned; externally peer reviewed.

REFERENCES 1 2 3 4 5 6 7 8 9

Gillum R. From papyrus to the electronic tablet: a brief history of the clinical medical record with lessons for the digital age. Am J Med 2013;126:853–7. Siegler EL. The evolving medical record. Ann Intern Med 2010;153:671–7. Poirier S, Rosenblum L, Ayres L. et al. Charting the chart—an exercise in interpretation(s). Lit and Med 1992;11:1–22. Kleinman A. The illness narrative. Suffering, healing and the human condition. New York, NY: Basic Books, 1988:3–6, 16. Sobel RJ. Eva’s stories: recognizing the poverty of the medical case history. Acad Med 2000;75:85–9. Donnelly WJ. Righting the medical record. Transforming chronicle into story. JAMA 1988;260(6):823–5. Phelan P. To suffer a sea change. Georgia Rev 1991;45(3):507–25. Woolf V. On being ill. Ashfield, MA: Paris 2002:1–2. Frank A. The wounded storyteller: body, illness, and ethics. Chicago: U Chicago Press, 1995:60.

Downloaded from http://mh.bmj.com/ on November 19, 2015 - Published by group.bmj.com

Original article 10 11 12

Scarry E. The body in pain: the making and unmaking of the world. New York, NY: Oxford U Press, 1985:4. Morris DB. The culture of pain. Berkeley, CA: U California Press, 1991:158. Marshall R, Bleakley A. Lost in translation. Homer in English; the patient’s story in medicine. Med Hum 2013:13;47–52.

Winkelman M, et al. Med Humanit 2015;0:1–7. doi:10.1136/medhum-2015-010669

13

George Spaeth: glaucoma expert ‘living life right. Ocular Surgery News U.S. Edition. 15 February 2002. http://www.healio.com/ophthalmology/glaucoma/ news/print/ocular-surgery-news/%7B111be781-a76b-406c-866f-53add8be57bb %7D/george-spaeth-glaucoma-expert-living-life-right (accessed 5 Dec 2014).

7

Downloaded from http://mh.bmj.com/ on November 19, 2015 - Published by group.bmj.com

Charting Phelan's 'To Suffer a Sea Change' Megan Winkelman, Jacqueline Ng and Audrey Shafer Med Humanities published online July 15, 2015

Updated information and services can be found at: http://mh.bmj.com/content/early/2015/07/15/medhum-2015-010669

These include:

Supplementary Supplementary material can be found at: Material http://mh.bmj.com/content/suppl/2015/07/15/medhum-2015-010669.D C1.html

References Email alerting service

This article cites 7 articles, 0 of which you can access for free at: http://mh.bmj.com/content/early/2015/07/15/medhum-2015-010669 #BIBL Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.

Notes

To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/

Charting Phelan's 'To Suffer a Sea Change'.

Physicians and healthcare workers usually perceive their medical record entries as documentation rather than construction. In the following article, w...
200KB Sizes 1 Downloads 8 Views