The Patient’s Story
When you have mouth sores you think very carefully before even trying to take a bite of food; even something as innocuous as a yogurt smoothie is like swallowing a handful of nettles. This also happened to be the time when my hair truly fell out. Because I couldn’t eat my weight had dropped alarmingly. I happen to be one of those people who look a wreck when I have a mere head cold; I look horrible out of all proportion to my symptoms. This time when I looked in the mirror I was truly alarmed. This was not a case that the Look Good–Feel Better people could solve.
—J. Hooper1
Chapter Objectives
• Distinguish between the different “voices” encountered in the telling of a patient’s story
• Identify some of the literary forms used in health care communications
• Relate a patient’s narrative to his or her own experiences, values, and beliefs
For many decades, most health professionals believed that if they carefully observed a patient and listened to the patient’s responses to the numerous questions they posed, then they could arrive at an accurate clinical diagnosis and treatment plan. However, this approach to understanding the patient’s experience or story in order to offer effective interventions is not sufficient for several reasons. First, asking an established list of questions to arrive at a diagnosis of any type shapes the story along health care lines, not the “lived” experience of the patient.
Second, the patient’s role is passive in this traditional model of interviewing and ignores the fact that a “new” story of what is wrong, what needs to be fixed or needs attention, is being unilaterally created by the health profession. This chapter offers a different way of viewing what happens during interactions between health professionals and patients, as well as an understanding of the roles both play in creating the patient’s story.
Human beings experience illness, injury, pain, suffering, and loss within a narrative, or story, which shapes and gives meaning to what they are feeling moment to moment.2 One may say that our whole lives are “enacted narratives.” Another way to understand this is to think about life as an unfolding story. Narration is the forward movement of the description of actions and events that makes it possible to later look back on what happened. And it is through that backward action that we are able to engage in self-reflection and self-understanding.3 Illness and injury are milestones in a person’s life story. “The practice of medicine is lived in stories: ‘I was well until …’ ‘It all started when I was doing …’ are common openings of the medical encounter.”4 Think about an illness or injury “story” from your own life. How does your story begin? Is your story a tragedy or a comedy? Who has a starring role? Who has a supporting role? All of these elements of an illness or injury story tell us a lot about who you are as a person, how you see the world, and what is important to you. The same is also true of the patients you encounter in clinical practice.
Much of this book has emphasized that health professionals are called into a particular relationship with patients because of the importance of the illness experience or serious injury. The medium of that relationship is the patient’s story. This chapter will help you grasp the importance of paying attention to the unique and personal story of a particular patient’s life beyond the more general suggestions we have offered so far. Because the final focus of all of our efforts in health care is the patient, the insights that arise from viewing the patient’s account of what is meaningful about an illness or injury experience are essential to delivering high-quality care. Furthermore, narrative analysis or narrative theory can offer ways for health professionals to understand the stories that patients tell from a variety of perspectives. We highlight how different voices offer different stories of the patient’s predicament. We briefly explore some of the basics of narrative theory and apply it to health care communications, such as textbooks, scientific journal articles, and the medical record. We go beyond professional, scholarly literature to the humanities to include some examples of literature such as poetry and short stories to give you an opportunity to read and think in different terms about patients’ and health professionals’ experiences.
Who’s Telling the Story?
When a patient enters the health care system, regardless of the place of entry, an exchange of stories begins. It might be hard for you to consider the patient’s “history” portion of a traditional history and physical examination to be a kind of story, but it is. So are the entries in a medical record and the scientific explanation of a particular pathological condition in a textbook. Even within the health record, for example, many individuals who are members of the health care team contribute their voices and perspectives to the single entity of the patient’s health record.
Montgomery has convincingly argued that all knowledge is narrative in structure.5 Although her work focuses on the physician and patient encounter as a story, her insights apply to all health professional and patient encounters. In these encounters, the patient tells the story of an illness or injury, which she notes is an interpretive act in that the patient chooses certain words and not others and reports some incidents and not others. The physician [health professional] then interprets the story and translates it into a list of possible diagnoses. Frank suggests that the physician’s story is guided by the notion of “getting it right.” “Diagnostic stories are about getting patients to the appropriate treatment as quickly as possible.”6 From the patient’s perspective, however, getting it right may or may not be what is important. For example, a patient who has a chronic illness such as multiple sclerosis might have a story that is guided by figuring out how to cope with the unpredictable nature of the disease, or a dying patient might want to address challenges to his or her faith. Getting to a correct diagnosis does not seem like the appropriate response to either of these patients’ stories. The act of interpretation begins by really listening to what the patient is trying to say.
Narrative theory helps us understand what patients are experiencing and to appreciate or adopt others’ perspectives.7–9 Narratives pull elements together such as events, characters, and setting in a meaningful way. If we think about a novel as one type of narrative, the preceding explanation makes sense in that we expect that every novel will include events, characters, and setting arranged in some manner. The novel will also include a plot, point of view, and motivation so that we can understand why the characters act the way they do. It is only when we apply these components of narrative theory to written communication within the health care setting that things get confusing because the genres are so different. One way to help clarify the application of narrative theory to clinical practice is to begin with the narrator or the person who tells the story. You will see that when the narrator shifts, so does the content of the story.
From the Patient’s Perspective
One way to highlight the different ways that the same story can be viewed is to look at it from various perspectives. For example, how is a cerebral vascular accident (CVA) seen from the perspective of the patient, written about in the medical record, and described in a medical textbook? Before we look at these different “stories” about a CVA, consider the most basic differences in language here regarding what we call the neurovascular injury in question, a cerebral vascular accident, or, in common language, a stroke. Think of all the metaphoric meanings of the word “stroke” that are stripped away by the use of the clinically sterile term: cerebral vascular accident. Even this technical term uses a word that leaves room for interpretation because an accident connotes a variety of meanings. An accident is unintended, not foreseen. Think about how we would view this diagnosis if the term were cerebral vascular event rather than accident. What is the difference between an event and an accident? Next consider how health professionals distance themselves even further from the patient’s experience by replacing “cerebral vascular accident” with the acronym “CVA.” We will now return to the patient’s perspective with a personal account of a man who had a stroke. He recounts his experience in the past tense. This is common because most patient stories are recollections.10 The following is an excerpt from a much longer account of the stroke that changed this person’s life:
On May 23rd, 2004, I was reading a Hopalong Cassidy novel by Clarence Mulford, the best western author ever, late at night when an artery on the right side of my brain burst and began bleeding into my skull. I suddenly experienced the mother of all headaches. Headaches for me were rare. I’d had fewer than five in my entire life. As I read, the words on the page broke apart into individual letters that started crawling off the page like ants off a paper plate. It was a hallucination, and it wouldn’t be my last. I walked to the bathroom to get some aspirin, the only pain reliever on hand. I felt “removed,” very “spacey.” I looked in the mirror as I passed by and was shocked by what I saw. My mouth drooped on the left side. Suddenly my bowels knotted up and my stomach did a flip. My face looked like melted wax. I suspected I was having a stroke because of the droop. I remember seeing Kirk Douglas after his stroke. Following a short bout of diarrhea, I vomited. This worried me because I’d seen many animals let go from both ends when they were fatally injured. My left leg wouldn’t work, and my left arm felt like it was made of wood. Walking was impossible. I fell more than a dozen times while returning the thirty plus feet to my bed. Each time I got up, only to fall again. I refused to just lay there. My thinking was confused and clouded, but I vaguely knew I was in trouble.11
The description is written in the first-person voice. Voice is the personality of the writer coming through the words on the page. Voice can give the reader an indication of the uniqueness of the person who is speaking in the text. When a writer uses the first-person voice, it feels as if the writer is talking directly to the reader. The story begins with what could appear to be an unnecessary detail in that the patient tells us what he was reading and his opinion of the author’s work. Although we do not need to know which western novel he was reading or even if he was reading at all, this information gives us some insight into how the patient marked the moment the stroke began and a bit about his values and tastes.
REFLECTIONSThis is probably not the first time the patient told the story of his stroke, although it could be the first time that he actually wrote about his experience. In the telling and retelling of landmark experiences such as the trauma associated with a stroke, “the narrative provides meaning, context, and perspective for the patient’s predicament. It defines how, why, and in what way he or she is ill. It offers, in short, a possibility of understanding which cannot be arrived at by any other means.”12 When a patient begins to tell you the story of his or her illness, you might be able to discern whether this is a familiar, often told story or if the patient is still trying to figure out what happened and make sense of the experience. Clearly, only in retrospect could the patient know that “an artery on the right side of my brain burst.” He includes this information in his written account to help make sense out of what happened, but he could have easily left that clinical explanation out of his story and just provided the facts of what progressed that night.
Health Record
Beginning with the patient’s direct experience of the trauma that he has undergone, let us move forward in time to a different setting and interpretation of the story of his CVA and what is happening to him. The patient reports that he was eventually discovered by his brother and taken to an emergency department at a local hospital. In a hospital, one of the vehicles for communication between health professionals who care for a specific patient is the health record. The health record might be handwritten but is today more commonly electronic health records (EHRs). How might the patient’s story continue in the EHR? Here are three typical entries, the first from the nurses’ notes, the second from the medical progress notes, and the third from physical therapy. Assume that they were written 3 days after the patient was admitted to the hospital.
Nurses’ Notes–7/18/20__ Impaired physical mobility; impaired verbal communication R/T aphasia; unilateral neglect; fear and anxiety
9:00 A.M.
AM Assessment Notes: Pt. irritable and tearful. Repeatedly asked for “book” but no books found in bedside stand. Pt. then pointed to photo of his wife on over-bed stand. Pt. calmed down when reassured wife would visit soon. Pt. ignores L arm when moving in bed. Pt. needed assistance with breakfast. Poor appetite.
Plan: Continue to support pt.; consult with speech, occupational, and physical therapy as needed; use every encounter to support communication; obtain picture board; remind pt. to attend to L arm and leg affected by sensory alteration.
Physician’s Progress Notes–7/18/20__ Dx: R hemisphere hemorrhagic infarct.; Pt. stable; echo, CXR, repeat MRI; contact speech/OT/PT for rehabilitation assessment.
Physical Therapy Notes – 7/18/20__:
S: Pt. teary. No c/o pain.
O: Alert, oriented to place and person. Cooperative with therapist but is impulsive. Range of motion is within normal limits. Flaccid paresis in left upper limb. Left lower limb strength is zero. Poor hip extension, hip adduction and knee extension. Minimal spasticity in left lower limb extensor mm. Pt. demonstrates denial of left upper and lower limb. Could not assess sensation due to emotional labiality. Pt. needs maximal assist to roll in bed and supine to sit. Sitting balance is poor. Did not stand patient.
A: Left hemiparesis. Dependent in mobility and basic activities of daily living. Good rehabilitation candidate with goal to achieve ability to perform bed mobility and transfers with minimal assist and ability to locomote via walking with assist.
P: Recommend for inpatient stroke rehabilitation when medically stable.
REFLECTIONSClearly, there is a difference in how the patient and health professionals describe what is going on. In Chapter 9 we discuss the use of jargon in health care and how it serves a useful purpose of facilitating communication between health professionals but also works to distance patients from caregivers. The jargon in these sample entries from a fictitious medical record almost becomes impenetrable to a novice in the official language of health care. Did you understand all of the terms and abbreviations? What is “flaccid paresis?” Did you know that “R/T” means “related to,” that “echo” is shorthand for “echocardiogram,” and that “CXR” is an acronym for “chest x-ray?”
Although the patient describes his experience of having a stroke in the first-person voice, the EHR refers to him in the third person. He is now “Pt.,” which is shorthand for “Patient.” In the assessment notes from the physical therapist, the patient is almost completely invisible in the account. We will discuss point of view in more detail later in this chapter. It is sufficient here to note the type of voice used in writing and the implications of using a particular voice. Third-person voice distances us from what is going on in the narrative. The EHR may even move further away from these textual accounts to drop boxes that merely require a check or click to categorize the diagnosis or problem and the plan of care. One final comment about all health records, whether written or electronic—they are essentially monologues with each member of the health care team entering information and offer little to no opportunity for interaction.
Consider one more version of the patient’s story, this one even further removed from the personal experience of a CVA. In a current medical diagnosis textbook, the clinical signs and symptoms of an intracerebral hemorrhage (ICH) are described as follows:
Although not particularly associated with exertion, ICHs almost always occur while the patient is awake and sometimes when stressed. The hemorrhage generally presents as the abrupt onset of focal neurologic deficit. Seizures are uncommon. The focal deficit typically worsens steadily over 30 to 90 minutes and is associated with a diminishing level of consciousness and signs of increased ICP such as headache and vomiting.
The putamen is the most common site for hypertensive hemorrhage, and the adjacent internal capsule is usually damaged. Contralateral hemiparesis is therefore the sentinel sign. When mild, the face sags on one side over 5 to 30 minutes, speech becomes slurred, the arm and leg gradually weaken, and the eyes deviate away from the side of the hemiparesis. The paralysis may worsen until the affected limbs become flaccid or extend rigidly. When hemorrhages are large, drowsiness gives way to stupor as signs of upper brainstem compression appear. Coma ensues, accompanied by deep, irregular, or intermittent respiration, a dilated and fixed ipsilateral pupil, and decerebrate rigidity. In milder cases, edema in adjacent brain tissue may cause progressive deterioration over 12 to 72 hours.13
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