This is the third installment in a series of four articles on narrative-based medicine, a protocol for building the therapeutic alliance that rests on holistic principles and addresses shortcomings in the evidence-based medicine and biopsychosocial models of practice. In the two previous installments, I introduced the core ideas of narrative-based medicine and compared it to evidence-based medicine and biopsychosocial models. This is a more practical piece, in which I provide a real-case description, an outline of the common approaches to the patient, and an example of how a narrative-based practice would work. This article is designed partly as an exercise, so as you read, you will find suggestions to stop, take notes, and only then read on. This exercise should offer a sense of how narrative-based medicine is meant to be applied in a practical setting, and is followed by observations on how this differs from more conventional approaches.

Case Study

The case description and all details that follow are real and used with permission. Names and any identifying details have been removed, although some details have been summarized for length.

Case Notes

Forty-year-old female, average weight/BMI. Sedentary lifestyle; desk job. Old cervical injury (C6 bulge). Hypermobile but functional, has not been assessed for Ehlers-Danlos. Visibly weak periscapular muscles with scapular winging, shoulder instability, and frequent mild pain on affected (right) side. Lower back pain for several months following known strain from heavy lifting. No other serious health complaints.

Patient presented with new symptoms including acute pain in the right posterior forearm and hand, refractory to analgesics (painkillers). Awakens most mornings with acute pain, as well as stiffness and dull pain in most finger joints, occasionally with redness and mild swelling (sausage finger description). Occasional Raynaud’s syndrome in fingers and toes triggered by minor environmental temperature changes. Rheumatology blood work negative; thyroid normal, all other blood work normal. No obvious physical or postural triggers and no other recent injuries.

Treatment

Ten minutes infrared radiation; 10 minutes TENS (transcutaneous electrical nerve stimulation) applied to upper back; 15 minutes shock-wave therapy (patient consulted first); 30 minutes massage.

Following the session, the patient said she felt largely relieved of the discomfort, and telephone follow-up during the week confirmed the pain had not returned. Several months later, it had still not returned.

Evidence-based medicine Approach

Best evidence-based medicine practices recommend incorporating clinical experience, the latest evidence, and patient preferences. Experience and training will differ from one practitioner to the next, as will familiarity with the evidence. This therapist was familiar with the patient, but this set of symptoms was new to both of them.

Ideally, this therapist should have sent the patient for imaging to see the state of the old neck injury, and in consultation he should have followed a sequence of movement assessments before beginning to treat the patient with a combination of electrotherapy and massage. He did neither, but he did question her closely on the quality, pattern, and behavior of the pain. On palpation, he located some tender points that elicited a twitch response in the patient’s levator scapulae, supraspinatus, and rhomboids, and gentle massage gradually eased the patient’s discomfort. A one-hour session using electrotherapy modalities combined with massage seemed to resolve the acute phase of the hand/forearm complaint. The patient refused acupuncture, and said she was unlikely to maintain an exercise regimen.

Can this therapist be said to have followed an evidence-based medicine approach, based on this description? What would you have done differently?

Biopsychosocial Details

This was a highly educated patient, aware of the basics of physical health, comfortable with scientific terminology. She had struggled with cervical pain for many years, and more recently, lower back pain due to work-related strain, and the therapist had unsuccessfully encouraged her before to attempt to adopt a gentle exercise regimen, but she had not done so.

The patient had no outside assistance for manual work around the home, was strongly independent, and saw the idea of seeking help as weakness. This episode had made her fearful, as prior to seeing the physiotherapist she had seen a series of specialists, fearing an autoimmune condition. Though her lab work had come back clear, she had endured several months of limited functionality and constant low-grade, occasionally acute pain, and was concerned that this might lead to sensitization.

The patient’s sleep pattern was inconsistent and poor, and she worked long hours at her desk. She had previously experienced a series of family bereavements, ongoing caregiving responsibilities, a partner with chronic pain and mobility issues, and a relocation involving a lot of heavy carrying. Though these events had occurred over a year prior to the presentation of these symptoms, they may have resulted in stresses, tensions, and strains reflecting both physical and psychological trauma.

The therapist questioned the patient regarding daily activities, the pain onset and pattern, and her openness to following an exercise regimen. He also sought her preferences regarding treatment options. Discussion revealed she often carried heavy shopping bags and lifted heavy objects, and her office chair was the likely cause of coccygeal pain and cervical tension. The therapist emphasized the weakness of her back muscles, the compensation occurring due to this, and reminded her of previous visits due to cervical pain flares.

On inquiry, the patient was already aware of the anatomical interactions making this muscle weakness an important target for intervention. The therapist restated the reasons and benefits for making certain lifestyle changes, acknowledging the patient’s resistance to doing so, but did not provide a solution to overcome that resistance beyond demonstrating a couple of easy exercises to perform at home.

After this session, the patient bought a cart to carry heavy loads and shopping bags from her driveway to her door, and began getting outside paid help for the heavier yard work. The following winter, she wore gloves indoors to guard against the Raynaud’s symptoms, which had previously triggered digital joint pain. She bought a new office chair, paid more attention to her sitting posture, and guarded the painful arm, favoring the other whenever possible. Within a few months she had put on several pounds (going up two dress sizes), continued to avoid exercise, and her sleep continued to be patchy. A year after this episode (there had been no recurrences), she still favored her “good” arm and continued to avoid the heavier tasks she had done in the past. She did not seek further help.

Exercise

Note your answers to the following questions before reading further.

• Have the therapist’s attempts at helping this patient make lifestyle corrections been successful?

• Where did they succeed, where did they fall short,
and why?

• What would you have done differently, based on the information above?

• What information is still missing?

Narrative Medicine Approach

One of the key protocols of narrative medicine training involves learning to listen—and read—closely, in preparation for learning to read between the lines of a patient’s narrative. This narrative goes far beyond what is revealed by the case notes, and it bridges several gaps also left by the biopsychosocial approach, which too often boils down to attempts to educate and “correct” the patient, however gently, but does not always leave room to explore aspects of their own story that might reveal the solution.

Although what follows is not a substitute for training in narrative medicine, it is enough of a sample to provide a sense of how differently it can work to the other approaches.

Close Reading Exercise

As you read the following patient narrative, start by highlighting or underlining anything that stands out to you in general, and make a note of your observations. Then, come back to the following points and attempt to answer them. These are the elements you should look for in close reading.¹

Observation. What sensory elements are present in the narrative? What do you or the narrator see, hear, smell, touch, or feel?

Perspective. Whose perspective is the story told from? Is there more than one? Are some perspectives suggested, rather than stated? How are they communicated?

Form. What is the type (genre) of writing? Is it a story, a poem, a dark comedy? What imagery or symbols are used? Is the story told in chronological order, is it chaotic, does it point to other stories? What is the tone? Is it relaxed, friendly, formal?

Voice. Whose voice is narrating? Is it in the first person, second person, or third person? Is the narrator close to you or distant? Are they self-aware? In other words, do they seem aware of the implications of their narrative?

Mood. What is the mood of the narrative (sad, neutral, amused, hurting, calm)? What mood does it leave you in after reading it?

Motion. How does the story move? Does something change between the beginning and end? Does it take you on a journey? Does it move in circles, or does it communicate a feeling of being stuck?

As you read on, take a few moments to note your responses to the points above. Take your time to work with the story, to observe the word choices, and to think about this patient as a whole person.

Patient Narrative

Last winter, I spent several months in excruciating pain. First my back went, and I spent two months in bed. Then, I could barely use my hands. It drove me crazy.

The winter was so cold I had to keep carrying in the wood wearing a belt for my back, but my hands would ache day and night. At one point, I couldn’t type. My fingers kept going blue as soon as the temperature fell. N. said I should wear gloves in my office, but I thought that was ridiculous. Every morning I thought it might be a little better, but my hands have become monsters. They have a mind of their own. I looked at the symptoms, and I’m starting to think this has to be rheumatoid arthritis. I’m the right age, and after everything that happened in the last couple of years, maybe my body decided to take revenge on me.

Dr. G. gave me the name of a rheumatologist. He was very nice, thought this was probably lupus, and sent me for a battery of tests. I spent a week convinced I knew what I was going to die of. I felt strangely relieved. After so much death, it was like a new friend had moved in. I knew what would take me. But I was wrong because the tests were clear. Surprised, the rheumatologist said there was nothing wrong with me, maybe it was somatized grief, and I just needed to give myself time to recover. He’d be right there, but there’s no cure for what I’ve been carrying. The next day, I woke up screaming in pain and called him right away. He told me the name of some painkillers, which I didn’t bother to get. The rest of the week was hell. I woke up screaming in pain almost every morning. It got so bad I was afraid to go to bed.

The lightbulb moment came when, as I writhed, sobbing, I shrieked at my partner, “FIRE! My hand is on FIRE!” He immediately insisted that I phone my physiotherapist—the one specialist I had forgotten, as I’d gone hunting after rare autoimmune conditions. I argued back, never having experienced the degree of pain that cervical radiculopathy can generate. Indeed, it seemed my old cervical disc bulge was having a temper tantrum, and my back had turned into a broken jigsaw after everything I’d done to it.

One visit to my physio, a new chair, and a new pillow delivered me from the agony within a few days. The neck grumbles occasionally, but the acute pain has not returned since. My back is beyond redemption.

Two things stayed with me about this experience. First, the key to the mystery was the word fire. I awoke screaming “fire,” and that unlocked it. My physiotherapist also zeroed into that description, asking me several times to be precise in how I was describing the sensation. The second thing is how my therapist made me laugh. He was working on my neck, and, poor man, for the 10th time tried to suggest I might moderate my activities, and start getting some exercise. We’re almost the same age and he teased me, reminding me that we’re not getting any younger. “But,” I said to him, “I do so much yard work, the house is huge, the grounds are huge. I chop and carry wood, and I do it all myself. That’s plenty of exercise!” Laughing, he replied: “My dear, that’s not exercise. You’re an intellectual, but you’re also a lumberjack!” We had a good laugh, and I’m grateful he puts up with me even though I’m such a bad patient.

Narrative Approach Exercise

Before reading further, please take the time to first highlight any points, words, or phrases that stand out. Then, work through the narrative using the six points for close reading (page 42). When you’ve done so, read on and compare your observations. It’s important to note that there are no right or wrong answers at this stage—you’re looking to get to know this patient through her narrative.

• Which words do you notice? What seems unusual to you?

• Notice the use of “temper tantrum” and “grumbles” to describe the chronic neck issue.

• Hands become “monsters,” her back becomes a “broken jigsaw.”

• Patient seems to want to distance herself from the parts of the body that are in pain, to separate herself from the sites of pain. In other places, she gives her painful body parts a personality—like a misbehaving toddler she just wants to hush (“mind of their own”; “take revenge”).

Observation

The narrative is very tactile. It focuses primarily on physical sensations, with little to nothing visual until “FIRE” is repeated and becomes central to the narrative. The only sound is of her “screaming in pain” (repeated) and “shrieking.” Pain is also given a sound: “tantrum,” “grumbling.” She seems to have everything under tight control until it breaks the surface—and then it’s explosive. The “pain” words are much more intense than anywhere else. The rest of the narrative is quite crisp and quiet in comparison. Control issues?

Perspective

The narrative is mainly told from the patient’s perspective, with a little bit from the therapist’s perspective too. The partner seems to have the most insight, but the patient seems very preoccupied and resistant to advice or help.

The form is like a journal entry, fairly informal, but self-aware in that some details seem to have been added in expectation that strangers might read it. She explains details about her activities to fill in the gaps. Repeated imagery of body parts almost as enemies. The story is told in chronological order, but it seems as if there is a backstory she is not telling, something already absorbed, accepted, or that she doesn’t want to share. Possibly related to the “somatized grief” mentioned, but not explored.

The patient says “there’s no cure.” Is this the root of the problem? Despite the explosions of graphic, pain-related imagery, the narrative is controlled, and there is a sense of having given up on getting help (“no cure,” “beyond redemption”) or some deep resistance to it. The sub-story, with the rheumatologist and suspected lupus, is incredibly cold—as if she is content with such a potentially serious diagnosis. That is peculiar—in combination with the mention of grief, maybe needs exploring.

The patient tells the sub-story of the conversation with the therapist hinting at the one line that got her to change a few things. She liked being compared to a lumberjack.

Voice

It’s all in the first person; some of it is businesslike. Some of the more colorful details make it seem quite intimate, but in fact, it’s fairly remote. The patient is creating distance between herself (the controlled voice) and the pain breaking through and coming closer to us. Almost as if she’s offended by it.

The patient says she is a “bad patient” and is aware of what the therapist is trying to help her do, aware that she’s not going to do it, and feels sorry for his efforts that she’s already decided will fail. She doesn’t seem to want to help herself—or doesn’t want to acknowledge needing help? Does she feel unable to help herself? Is the resistance because she doesn’t believe it will work?

Mood

The patient’s mood is neutral in some places, but shows moments of graphic pain, fleeting moments of darkness, and although the mood at the end is almost satisfied and amused, it leaves something unfinished, uncomfortable.

Motion

The story moves toward a kind of resolution of the immediate problem, and the patient seems happy enough that she’s no longer in pain—as if her problem is now resolved. The backstory seems unresolved, though, and it may be key to understanding the resistance to help or change.

Notes

We still know very little about this patient’s family and cultural background. We’ve read about grief, caregiving duties, and work, and can guess she is in a rural area (large yard, carrying firewood) but little else. These elements would need to be sensitively explored before taking too much for granted. Cultural essentialism (reducing our understanding of the individual on the basis of generic or stereotypical cultural characteristics) must be avoided.

Patient Feedback

On being asked to reflect on her narrative based on these comments, the patient provided the following further feedback:

I chose raw and graphic words to describe pain because I wanted the reader to see me writhing, to have no doubt as to its intensity. I do not analyze it, and I do not call it “my” pain. It is “the” pain because I want to separate it from me.

This experience is unacceptable to me—I just wanted it to stop—but I endured it for three months before seeing someone. I didn’t take action because I did not want to “own” my pain. I wanted to distance myself from it, not allow it in.

I liked the therapist’s description of me as an “intellectual lumberjack” because, to me, that meant someone who endures hardship and physical strain as part of life, who ignores warning signs, and who is altogether rugged when it comes to how they handle themselves physically. That sums me up rather well. The therapist has known me for a few years, so he knows I know what I “should” be doing.

I have an ingrained “can-do” attitude to physical effort, which doesn’t actually reflect my degree of fitness. I hate exercise. Spending what I see as time I don’t have on mind-numbingly boring exercises is my idea of torture. I know the logical arguments, I understand the science, but it’s not going to change because nobody has yet been able to show me how I can systematically incorporate those lifestyle hacks into my daily routine without getting bored—or admitting I need to do so. It has always been easier to just ignore the pain. This was the first time I couldn’t.

Questions to Consider

Consider these questions and jot down your answers.

• How would you talk to such a patient?

• Is this someone who gets listed as “difficult” and gently pushed toward a different therapist?

• Is this someone who might be judged and dismissed for what seems like a willful refusal to take advice?

• Might it be easier to simply shrug the backstory off as something irrelevant?

• What are the implications of that?

• Is this someone who would respond to attempts at pain education?

• Might they respond better to touch?

• What is it they really need, and is it what they think they need?

• How would you work with these issues within your scope of practice?

Now, compare your notes and observations from this section with the notes you made after the “Biopsychosocial Details” section.

• What has changed?

• What more have you discovered about this patient?

• What do you still not know?

• How would you proceed?

Learning from Patient Narratives

This example illustrates how narrative medicine can reveal insights about a patient that go beyond the superficial. Compare the case notes at the beginning to the checkbox approach to the biopsychosocial model to the close reading of the patient’s narrative and their feedback.

Conclusion

This short guide is only a small part of what narrative medicine entails; fuller training includes learning to work with your own words and those of others in a small group setting, allowing vulnerability and observation to reveal how we tell our stories. Once that skill is grasped, it can be applied to patient narratives to help you explore their stories in a systematic, compassionate way that goes well beyond a checklist approach that will still leave disconnected pieces.

In this patient’s narrative, the rheumatologist did in fact apply a biopsychosocial approach. He gave the patient several opportunities to ask questions and asked how she felt and what stressors may be in the background. But this information was left hanging, and once the test results were seen to be clear, the patient was dismissed with the remark “maybe it’s somatized grief.”

The rheumatologist’s diagnoses may have been correct, but it gave the patient no direction; rather, it seemed to confirm her need for control. The physiotherapist did not go much further with it, but he did achieve a few small successes by showing her that she had been genuinely seen, her quirks acknowledged, her wishes—and her resistance—respected, turning the relationship into an alliance of equals. He followed up a few times to check on her progress, encouraging her to make little changes where he thought she might respond. Though these are small steps, this is the kind of meaningful encounter that can begin to foster trust, allowing the therapist to frame the necessary advice in a way that actually gets through.

If trained in the application of narrative medicine, it is easy enough to adapt intake forms by asking new patients to write a short narrative of their experience of their condition before their session. Explain that you are requesting this information so that you can understand the full extent of their experience, beyond what a checklist can reveal. Invite them to be as open and uninhibited as possible in their writing. Tell them you want to understand their condition through their eyes, and that this will help you serve them better. Then, have them email it within two or three days before attending your clinic, which will allow you the time to work through the narrative and explore it in a similar way to the exercise we went through here—while also checking the boxes on the more standard forms. In this way, you have a starting point to work from before meeting the patient, it does not take much additional time to process, and you can begin building the foundation of trust and cooperation prior to your first meeting.

Learn More

For more details on the practical application of narrative-based medicine in a clinical setting, see Dr. Charon’s book The Principles and Practice of Narrative Medicine (New York: Oxford University Press, 2017). To learn more about narrative medicine in general, see the notes included in the “Listen, My Body Electric” article in the March/April 2021 issue of Massage & Bodywork (page 42). Finally, The Close Reading Guide (used in this article) is adapted from a workshop given by the Narrative Medicine Faculty at Columbia University in March 2021, where free weekly sessions are run to introduce clinicians, humanities scholars, and all interested parties to narrative medicine (narrativemedicine.blog).

Note

1. Adapted from: Rita Charon, Nellie Hermann, and Michael J. Devlin, “Close Reading and Creative Writing in Clinical Education: Teaching Attention, Representation, and Affiliation,” Academic Medicine 91, no. 3 (March 2016): 345–50, https://doi.org/10.1097/ACM.0000000000000827.

  With 20 years in teaching and more than a decade in journalism and academic publishing, Sasha Chaitow, PhD, is series editor for Elsevier’s Leon Chaitow Library of Bodywork and Movement Therapies and former managing editor of the Journal of Bodywork & Movement Therapies. Based between the UK and Greece, she teaches research literacy and science reporting at the University of Patras, Greece. She is also a professional artist, gallerist, and educator who exhibits and teaches internationally.