A middle-aged Zambian woman is wheeled into my office by her husband. She appears withdrawn and a look of hopelessness is etched across her face. Her clothing is loose and she looks malnourished. She is quiet and lets her husband do the talking. He explains that she hasn’t walked in several months, and she can no longer control her urination or bowel movements. Her husband pleads, “Doctor, tell us what’s causing this.” The woman looks uneasy. I reach out, touch her arm and ask, “Did you have something more you want to add to what your husband told me?” She looks surprised, but then quickly blurts out, “I wanted to tell you about my left breast.” She proceeds to tell me her left breast has been bothering her for months. It’s been growing in size and it hurts to touch. Her back has been hurting her as well. With her permission, I examine her left breast. Although it was not immediately noticeable under her loose clothing, her left breast is significantly larger than the right. It’s hard as a rock and there is dimpling. She tells me she’s been seen by a few doctors before this visit, but no one ever examined her breast before. They examined her legs and focused on her weakness. I continue to get more history, followed by a detailed neurologic exam. Once I feel I’ve gathered enough information, I spend time explaining to her and her husband that I’m concerned she may have breast cancer that has metastasized to her bone and is causing compression of her spinal cord, causing her legs to be weak. The pain on both of their faces is immediately visible. I fill out an investigation request form for an MRI of her spine and advise them to get the MRI done urgently in case any surgical intervention can be performed. I also instruct them to be seen immediately at the Cancer Hospital for a biopsy of her breast and further work-up. At the end of the visit, they manage to place a smile on their faces as they vigorously thank me for being so thorough and for spending so much time with them. I manage a smile back, but as they exit the room, my heart sinks inside my chest.
My formal exposure to narrative medicine began this academic year when I enrolled in the Johns Hopkins health humanities distinction track. Unknowingly, however, I was already diving into the world of narrative medicine at the start of my global health journey in Zambia. Each day practicing neurology in Zambia feels like a struggle against time. There are countless patients seeking neurologic care with only a handful of neurologists to manage the country’s overwhelming burden, which is typical of low to middle income countries worldwide. Although there are multitudes of patients to be seen, I am compelled to dedicate adequate time at each bedside, as I am experiencing firsthand the importance of hearing patient stories.
The core readings in the health humanities curriculum focus on the practice of narrative medicine and its importance in patient care. “Narrative knowledge is what one uses to understand the meaning and significance of stories through cognitive, symbolic and affective means.”1 Understanding each patient’s story is vital in order to arrive at the proper diagnosis and to address the patients’ pressing needs. Overall, it facilitates better patient care.
Allowing Patients to be Heard
Narrative medicine calls for doctors to ask questions, listen carefully and acknowledge each answer. It facilitates discussion between patient and provider, and necessitates that the provider remains open and accepting throughout the discussion. I like to call it healing through hearing. It’s important to listen to all of the patient’s concerns, and not just those regarding their chief complaint. By focusing solely on one area of a patient’s history, physicians may neglect other factors that could be negatively impacting the patient’s health. For example, if the narrative remains confined to physical illness, we may not understand the mental or socioeconomic elements at play.
Thoughtful listening is crucial when I obtain histories from patients who are HIV-positive and who present with concern for central nervous system opportunistic infection. In this population, it’s imperative to obtain an accurate and thorough history regarding the onset and progression of symptoms, recent CD4 count, viral load, current medications and any recent changes to the antiretroviral (ART) regimen. But it’s equally important to ask about access to resources and social support. In such complex situations, narrative medicine prompts physicians to be creative and to avoid following a scripted path. It asks us to dig deeper. Yes, the physician should aim to properly diagnose and treat the patient’s current infection, but managing the patient effectively entails a more comprehensive investigation. Is the patient having difficulty accessing transport to the nearest facility that provides the ARTs? Does he or she frequently forget to take the medications due to cognitive issues? Could HIV-associated neurocognitive disorder (HAND) be contributing to medication noncompliance? Narrative medicine compels the physician to ask more questions and uncover more answers.
Self-reflection and Growth
Besides enhancing patient care, narrative medicine influences physicians’ identity development. Physicians are constantly exposed to the tragedies and suffering of others. The physician experience is beautifully depicted in this statement by Rita Charon: “Altruism, compassion, respectfulness, loyalty, humility, courage and trustworthiness become etched into the physician’s skeleton by the authentic care of the sick. Physicians absorb and display the inevitable results of being submerged in pain, unfairness and suffering while being buoyed by the extraordinary courage, resourcefulness, faith and love they behold every day in practice.”1 When caring for patients, physicians experience situations that can provoke a wave of emotions — joy, hope, anger, despair and sorrow. At times, the magnitude of the sadness can be paralyzing. Each doctor responds differently to grief, and many experience identity challenges as they move forward in their training. Narrative medicine engages doctors to self-reflect and “grow in their personal understanding of illness.” It is also a valuable tool to develop social empathy by engaging with patients more closely. In doing so, doctors can immerse themselves in the patient experience and work toward alleviating pain and suffering. It’s healing through hearing at its best.
Unfortunately, not all medical institutions require the health humanities to be incorporated into the medical school curriculum, but I find it is an integral part of training that should be emphasized. Narrative medicine challenges doctors to respond to complex, ambiguous situations with a thoughtful and creative approach. It encourages personal growth and provides physicians with the tools to overcome disappointment and setbacks in their careers and personal lives. It fosters activism and empowers physicians to recognize and act upon disparities that exist in health care, ultimately leading to better patient outcomes and improved patient satisfaction. It implores the physician to investigate the patient’s illness as a whole, including the mental and socioeconomic factors that may afflict them. For how can we effectively help our patients if we don’t truly understand their ailment(s) in the first place?
1Charon, R. Narrative Medicine: A Model for Empathy, Reflection, Profession, and Trust. JAMA. 2001; 286 (15): 1897–1902. doi: 10.1001/jama.286.15.1897
2Hawkins, AH, MacEntyre MC. Teaching Literature and Medicine. New York, NY: Modern Language Association; 2000.
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