Narrative Medicine

Narrative Medicine Monday: My Human Doctor

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Dr. Sara Manning Peskin writes in the New York Times about the fallibility of physicians and its emotional toll in “My Human Doctor.” Peskin introduces us to her patient, Shirley, who was given a diagnosis of multiple sclerosis. This patient finds that in assuming this chronic, often debilitating, disease, even the very word itself “crippled her. She’d stopped driving, stopped working, and adjusted to the stigma of having a chronic disease.” After a hospitalization due to a serious reaction to one of her medications, it was discovered that “Shirley might not have had multiple sclerosis at all.”

Peskin reflects that in medical training we do discuss errors but “[w]e don’t talk about the emotional trauma of hurting a patient. Instead, most physicians cope with guilt, self-doubt and fear of litigation in private. After our patients, we become ‘second victims’ of our mistakes.” Given the recent spotlight on depression and burnout in medicine, Peskin highlights an important point that we ignore to our peril. Some organizations are realizing this and offering more programs such as Balint, peer support groups, and expanded counseling services to explore and address this emotional trauma.

When Peskin suffers the consequences of a mistake made by her own physician, the response she receives is “‘I can’t turn back time.'” Peskin experiences first hand that “[a]pologies are difficult for doctors, not only because we have to cope with hurting someone, but also because we are scared of the legal implications of admitting culpability.” Peskin outlines how the U.S. system differs from many other countries, where the “‘no-fault’ system is based on injury from medical care and not on proof of physician negligence…” and “doctors and patients remain on the same side, and more patients get paid.”

Peskin does end up apologizing to her patient, Shirley, for the misdiagnosis of multiple sclerosis. They were then able to move forward in the doctor-patient relationship and discuss Shirley’s adjustment to the “possibility of not having a chronic disease.”

Writing Prompt: Think of a time your doctor made a mistake. How did they approach the error? Did they apologize? If you’re a physician, think of a mistake that you or a colleague made that is particularly memorable. What happened and how did you respond? How did the situation affect the patient-physician relationship? Consider writing about this experience from both the patient and the medical provider’s perspective. Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: On the Eve of My Mother’s Dying

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Writer Peggy Duffy’s flash nonfiction piece in the latest issue of Brevity, “On the Eve of My Mother’s Dying,” is a snapshot of her mother’s last days on hospice.

Duffy opens with the assertion that those who work in hospice “coordinate.” In my experience, both as a physician and as a family member, caring for those at the end of life, this verb rings true. The hospice people coordinate all the details of transport and durable medical equipment and adjustment of medications for comfort and, ultimately, Duffy realizes, “my mother is actively dying, and they strive to coordinate that too.”

Duffy’s father is upset they are not coaxing his wife into eating, despite her being unresponsive. The social worker explains to him “that unless my mother opens her eyes and asks for food, unless she can swallow, she cannot eat.” Duffy understandably struggles with her father’s resistance to accepting why they can’t give her mother water to drink: “Not long after I leave, he calls. Why won’t they give her water? She can’t swallow. What about on a teaspoon? You have to swallow even the tiniest amount of water. How can she survive without water? (Pause) She isn’t going to survive. I remind him she signed an advanced directive years ago when she was still lucid and knew what she was signing.”

Duffy is surprised at the stretching of time in the final days of her mother’s life: “I can’t work, can’t think, can’t sleep. I never knew dying could take so long.” If you’ve cared for a loved one on hospice, did you experience the same distortion of time as Duffy?

The piece ends with a touching, and surprising, kiss from Duffy’s mother: “Something long dormant stirs beneath my chest where my heart lies. I lay my head on her chest where her heart still beats.”

Writing Prompt: Have you had difficulty explaining any aspect of end of life care to a spouse, child or parent of a dying patient? Often loved ones have discussed clear wishes of what they would like done, and not done, when nearing the end of life. When it comes time to actually carry out actions according to these wishes though, this still can remain a painful process. Have you experienced this first hand? Write for 10 minutes.

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Narrative Medicine Monday: The Name of the Dog

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In The New England Journal of Medicine essay “The Name of the Dog,” physician Taimur Safder remembers a lesson learned early in residency. Safder is stumped when, “as a freshly minted doctor,” he presents “a patient who was admitted for chest pain after walking his dog” and his attending asks a curious question: “‘What was the name of his dog?'” Safder is initially perplexed as to why this question even matters, but when the attending physician takes the group to the patient’s bedside to inquire, he realizes that very question “led to a transformation I did not fully appreciate at the time: there was an actual person behind that hospital-issued gown.”

This lesson proves valuable to Safder’s medical training. Through it, he forms similar connections with patients that allow him to “have difficult discussions about [the patient’s] immigration status and what it meant for his treatment plan,” and sign a “treaty under which [Safder] would read the ‘studies’ [the patient] brought in about black cherry and milk thistle and she would start taking one new medication every 2 months.” In learning about a person beyond their identity simply as a patient, trust develops and the patient-physician relationship can grow.

While caring for a patient who eventually ends up in hospice, Safder comes to another realization: “the question that I’d been carrying around since my first day of residency could work another type of transformation: it helped my patients see the person behind the white coat.”

Writing Prompt: Has there been a question you’ve asked a patient that revealed essential information about them as a person? Have you, as a patient, been asked a question by a medical provider that may not have seemed directly medically relevant but was important to them understanding you as a person? What was the question? What did it reveal? Write for 10 minutes.

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Narrative Medicine Monday: In Life’s Last Moments, Open a Window

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British physician and author Rachel Clarke advises in The New York Times that to care best for our terminally ill patients we should, “In Life’s Last Moments, Open a Window.” Dr. Clarke relays the story of a patient dying of cancer who was nonverbal but clearly in anguish. “We tried talking, listening, morphine. His agitation only grew.”

Clarke initially questions if the “sheer vitality of nature might be an affront to patients so close to the end of life — a kind of impudent abundance.” Instead she finds, as in the case of her patient with tongue cancer who merely wanted his door opened wide to the adjacent garden, many patients develop an “intense solace… in the natural world.”

It is the song of a blackbird outside her window that gives one of Clarke’s breast cancer patients perspective that even “[c]ancer is part of nature too, and that is something I have to accept, and learn to live and die with.”

Clarke shuns the idea that end of life care needs to equate to a “dark and dismal place.” Instead, she contends that what should dominate hospice “is not proximity to death but the best bits of living.”

Writing Prompt: Clarke’s patient Diane notes that cancer is a part of nature. What are the implications of this statement for you as a medical provider, as a patient, as a loved one? When you’ve been ill, have you found solace in nature? Write for 10 minutes.

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Narrative Medicine Monday: Vicious

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Tim Cunningham gives us a glimpse of Abdul, a teenage Rohingya refugee he encounters in a Bangladesh camp, in Intima‘s “Vicious.” Cunningham notes that his “belly was swollen like the rice fields” and “[t]hough described by many as non-literate because he had no official access to school, he could read the Quran with ease. His recitation of its Surahs was exquisite.”

When Cunningham meets Abdul in clinic, his pain is “everywhere,” as if “[h]is genocide had shifted internally, an annihilation of his once-healthy cells.” Abdul had lost his appetite entirely, did not “miss dahl and rice, mangos and bananas, though he knew that he should. ”

Cunningham imagines where he might transfer Abdul, had he the resources: “They would have diagnostics for his hepatomegaly and cachexia. They would have 24-hour staff, teams of nurses and physicians to treat and listen his life-story. The providers would all speak Rohingya. These thoughts were but daydreams. For extraordinary diseases, with extraordinary measures and extraordinary means, there are ways to treat illness.  If you are Rohingya, there is nothing.”

Cunningham’s prose elicits a visceral response to his patient’s physical and emotional trials, but it is Abdul’s word of response to a difficult intravenous stick that give both Cunningham and the reader pause: “Vicious.”

Writing Prompt: If you’re a medical provider, are there certain assumptions you make about a group of patients you see? How did you feel when Abdul repeatedly says “vicious?” What do you think that word might mean to him? What does it mean to you? Have you worked in a resource-poor setting or with a marginalized group of patients before? Recall an encounter with a patient. Write for 10 minutes.

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Narrative Medicine Monday: The Bright Hour

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I first came across Nina Riggs’ book, The Bright Hour, because of its comparison to another popular memoir, physician author Paul Kalanithi’s When Breath Becomes Air.

Riggs was a poet, and her writing style reflects this; short chapters with descriptive elements and a musicality to the sentences that leaves us wanting more. She is honest and funny. Diagnosed with breast cancer in her thirties, a life just hitting its stride with two young boys in tow.

In describing Atul Gawande’s book Being Mortal, Riggs illuminates the heart of her own memoir “of living and dying.” She notes the attempt “to distill what matters most to each of us in life in order to navigate our way toward the edge of it in a meaningful and satisfying way.”

Riggs navigates the world of oncology and the process of dying with candor and a clear sense of self. When her oncologist discusses her case with colleagues she bristles at the standard name for the meeting of minds: “Tumor board: the term kills me every time I hear it. You’re just saying that to freak me out, I think. What is actually a group of doctors from different specialties discussing the specifics of your case together around a table sounds like a cancer court-martial or a torture tactic.”

She takes her young sons to her radiation oncology appointment in the hopes of getting them interested in the science behind the treatment. In the waiting room, she becomes acutely aware of how, taken as a group, her fellow cancer “militia” appear: “Suddenly I am aware of so many wheelchairs. So many unsteady steppers. So many pale faces and thin wisps of hair and ghostly bodies slumped in chairs. Angry, papery skin. Half-healed wounds. Growths and disfigurements straight out of the Brothers Grimm. So many heads held up by hands.” Have you ever been entrenched in a world of medicine or illness and then suddenly seen it from an outsider’s perspective?

Riggs ushers the reader into her new world as breast cancer patient. In a particularly striking scene following her mastectomy, she goes to pick out a breast form from the local expert, Alethia. “‘Welcome!’ She says. ‘Let’s find you a breast!’ She tells me that according to my insurance, I get to pick out six bras and a breast form…. The one she picks comes in a fancy square box with gold embossed writing: Nearly Me.” As Riggs’ contemporary, I could see the grave levity in the situation; Riggs is a master at sharing her experience, heartache and humor alike.

In the end, this is a memoir of a young woman who is dying. She acknowledges this and realizes that, near the end, there is a metamorphosis of light: “The term ‘bright spot’ takes on a whole new meaning, more like the opposite of silver lining: danger, bone pain, progression. More radiation. More pain medicine. More tests. Strange topsy-turvy cancer stuff: With scans, you long for a darkened screen…. Not one lit room to be found… not one single birthday candle awaiting its wish. No sign of life, no sign of anything about to begin.”

Writing Prompt: If you’ve read Kalanithi’s When Breath Becomes Air or Atul Gawande’s Being Mortal, how does their approach to writing about dying compare with The Bright Hour? Riggs comments on a kinship with the “Feeling Pretty Poorlies” she meets during her radiation treatment but because of HIPPA privacy regulations, never knows if they finished treatment or if it was “something else” that caused them to disappear. Did you ever participate in a treatment where you saw the same people regularly? Did you wonder about them after that time ended? Think about the privacy rules set in place to protect patients’ privacy. What are the benefits? Do you see any drawbacks? Write for 10 minutes.

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Narrative Medicine Monday: Titanium Seed

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Poet Judith Skillman’s “Titanium Seed,” published recently in the Journal of the American Medical Association, describes the new “part of flesh inside” that is hers “to carry through / airports, not setting off / any alarms, they assure me, / not anything other than / a placeholder for cancer.”

She depicts the experience of getting a breast ultrasound, “the technician rubbing her wand / over and up hills of black / and white.” Skillman’s poem illustrates the anxiety associated with waiting for a diagnosis, the uncertainty of the pause that occurs after an aberrancy is found but before a definitive answer is revealed.

The seed represents an alteration of Skillman’s body, this reality of the possibility of cancer she harbors in her flesh unseen. She outlines how the patient is at the mercy of the medical diagnostician, describing how she lies “between two triangle pillows – / placed like an offering / to this Demi god who may / or may not find what appeared / on his screens.”

Writing Prompt: Think of a time you had a biopsy or lab test or imaging done and had to wait for the results. Sit in that space of uncertainty. Describe the experience. Did colors return, as they did for Skillman, when she receives a benign diagnosis? How did knowing contrast with the period of waiting? Try writing about this space of waiting from both the patient and medical provider’s viewpoint. Write for 10 minutes.

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Narrative Medicine Monday: Narrative Humility

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“Telling and listening become an antidote to isolation, a call for community.” – Sayantani DasGupta

Dr. Sayantani DasGupta is a leader in Narrative Medicine and faculty at Columbia University. What is narrative medicine? DasGupta explains it this way:

“Narrative Medicine is the clinical and scholarly movement to honor the central role of story in healthcare. Long before doctors had anything of use in our black bags—before diagnostic CAT scans, treatments for blood loss, or cures for tuberculosis—what we had was the ability to show up and to listen; to stand witness to birth, death, illness, suffering, joy, and everything else that life has to offer.”

In this TEDx talk at Sarah Lawrence College and in an essay in Creative Nonfiction on the same topic, she expands on the concept by describing narrative humility:

“Narrative humility means understanding that stories are not merely receptacles of facts, but that every story holds some element of the unknowable.”

DasGupta asserts that “listening to another person is an act of profound humanity; it is an act of profound humility. This is particularly true at those charged moments of illness or trauma, change or suffering.” Have you found this to be true, either as a patient or as a medical provider?

In a healthcare system plagued with burnout, DasGupta argues that narrative humility, learning to listen well to patients, can “deepen medical practice, bringing satisfaction and joy back to an ancient profession that is so much more than a business.”

Writing Prompt: Do you agree with DasGupta that we need to “once again train clinicians to elicit, interpret, and act upon the stories of others, that we hold in equal stead multiple ways of knowing—the scientific and the storied, the informational and the relational?” Why or why not? How can we do this? If you’re a medical provider, were you taught how to listen in your training? Have you considered the concept of narrative humility? Do you think it’s possible to practice this way in today’s healthcare system? Write for 10 minutes.

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Narrative Medicine Monday: Brain on Fire

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Susannah Cahalan’s gripping book Brain on Firerecounts her sudden descent into psychosis and her parents’ frantic search for the cause. (Fair warning that this post contains spoilers to this real-life medical mystery.) Cahalan, a successful young New York City journalist, notes small changes at first: mild numbness, forgetfulness, nagging insecurities.

After Cahalan suffers an overt seizure, she is further evaluated by a top neurologist. He is convinced, after her MRI, exam and blood work all come back normal, that her symptoms are due to alcohol withdrawal, despite no history of heavy alcohol or illicit drug use.

I was struck by the glaring assumptions made by her physician; the details of her narrative were lost on him and the opportunity for detecting her rare diagnosis was missed. Cahalan later in the book asserts the misdiagnosis was a “by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. It’s a bad system. Dr. Bailey is not the exception to the rule. He is the rule.”

I couldn’t agree more with Cahalan. Our system as it currently stands requires physicians to see more patients in less time, respond to more emails, make more phone calls and review more lab results, often at the end of a nonstop 10 hour day. It’s no wonder details of a patient’s narrative are missed. There’s no space to think deeply about a case, delve into the specific details that may provide a vital clue.

As Cahalan’s mental fitness deteriorates and her paranoia heightens, her mother insists she be admitted to the hospital and her neurologist acquiesces, finding a bed with 24-hour EEG monitoring at New York University Langone Medical Center.

Cahalan doesn’t retain many memories of the month she was hospitalized but does piece them together for the reader, using video obtained while being monitored for seizure activity, hospital notes and the recollections of her family and friends. Through these she paints heartbreaking snapshots of a young vibrant woman’s loss of function and reality.

Cahalan eventually comes under the care of a physician who finds time to listen to her story, every detail from the beginning. His diligence connects her to the proper clinician and results in her correct diagnosis and treatment. Cahalan’s account made me think of Dr. Danielle Ofri’s book What Patients Say, What Doctors Hear. The details of her story were so imperative to discerning, even suspecting, the correct diagnosis. Hers is a cautionary tale that reiterates the need for system reform if we want our doctors to have the time to put their extensive training to use and get it right.

Writing Prompt: After Cahalan recovers, she notes that she has difficulty distinguishing “fact from fiction.” She muses on memories lost and formed and struggles with the fear that she could, at any time, relapse. The experience causes her to reframe the brain as vulnerable. Do you think of the brain as fragile? Why or why not? Do you agree with Cahalan that a primary defect in the medical system is one that forces providers to see so many patients to “maintain their bottom line”? Think of a time this affected you as a patient. If you’re a provider, think of a time a diagnosis was delayed or missed because of systemic pressures resulting in a missed piece of a patient’s narrative. Write for 10 minutes.

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Narrative Medicine Monday: Grace and Forgiveness

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Oncologist Dr. Catriona McNeil writes about a severe adverse outcome her patient suffers in The Journal of Clinical Oncology’s “Grace and Forgiveness.”

Dr. McNeil treats her patient, Liz, who also happens to work in the same hospital, with a standard chemotherapy for breast cancer. When Liz suffers a rare but known possible complication from her chemotherapy, McNeil finds herself grappling with feelings of guilt, of responsibility. She initially wonders if she made a mistake, if there could be some other cause to her patient’s catastrophic decline: “The chemotherapy order had been checked and rechecked. Had I made a mistake? … She’d had nowhere near a cardio-toxic dose of chemotherapy. No, it couldn’t be that. Until eventually it could no longer be anything else.”

McNeil considers the early clinical studies of the chemotherapy she used, how those oncologists also might have “sat with a distraught family in a tiny room and had the same awful conversation. And yet how bland and unthreatening those little rows of text in the medical journals had seemed. How they’d sat so neatly in a small font near the bottom of the toxicity tables—cardiac death, 0.1% or thereabouts; just a handful of patients. Rare. Unlikely.”

This essay illustrates the limitations of medicine and the bias of human nature. It’s difficult to acknowledge we or our patients could suffer a detrimental complication, especially when it’s statistically rare. McNeil conveys the weight prescribing providers carry when such an event occurs. Although we all know, as patients and physicians, that there are no guarantees in medicine, it is jolting to experience what McNeil calls “the trauma of an adverse patient outcome.” Even though there “had been no malice or intent, no mistake or neglect,” McNeil still harbors guilt as she alone “had signed the chemotherapy order.”

Any treatment advised, from ibuprofen to chemotherapy, can have dire side effects. Learning to grapple with those consequences and continue to move forward with empathy for both self and the patient poses a great challenge to the medical profession.

Writing Prompt: As a patient, think of a time you’ve suffered an adverse outcome from a treatment prescribed by your physician. Even if you were well informed about the risks, benefits and alternatives, how did the experience affect you? Did it alter your opinion of your doctor or of medicine in general? If you’re a medical provider, write about a time you prescribed the best treatment available but your patient had a detrimental outcome. How did that affect you and your practice? Write for 10 minutes.

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