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Using Patient Stories To Mentally Survive As A COVID-19 Clinician

Dr. Christopher Travis, an intern in obstetrics-gynecology, has cared for patients with COVID-19 and performed surgery on women suspected of having the coronavirus. But the patient who arrived for a routine prenatal visit in two masks and gloves had a problem that wasn’t physiological.

“She told me, ‘I’m terrified I’m going to get this virus that’s spreading all over the world,’” and worried it would hurt her baby, he said of the March encounter.

Travis, who practices at the Los Angeles County + University of Southern California Medical Center, told the woman he knew she was scared and tried to assure her she was safe and could trust him.

Asking many questions and carefully listening to the answers, Travis was exercising the craft of narrative medicine, a discipline in which clinicians use the principles of art and literature to better understand and incorporate patients’ stories into their practices.

“How do we do that really difficult work during the pandemic without it consuming us so we can come out ‘whole’ on the other end?” Travis said. Narrative medicine, which he studied at Columbia University, has helped him be aware of his own feelings, reflect more before reacting, and view challenging situations calmly, he said.

The first graduate program in narrative medicine was created at Columbia University in 2009 by Dr. Rita Charon, and the practice has gained wide influence since, as evidenced by the dozens of narrative medicine essays published in the Journal of the American Medical Association and its sister journals.

Learning to be storytellers also helps clinicians communicate better with non-professionals, said writer and geriatrician Dr. Louise Aronson, who directs the medical humanities program at the University of California-San Francisco. It may be useful to reassure patients — or to motivate them to follow public health recommendations. “Tell them a story about having to intubate a previously healthy 22-year-old who’s going to die and leave behind his first child and new wife, and then you have their attention.”

“At the same time, telling that story can help the health professional process their own trauma and get the support they need to keep going,” she said.

Teaching Storytelling To Doctors

This fall, Keck School of Medicine of USC will offer the country’s second master’s program in narrative medicine, and the subject also will be part of the curriculum in the new Kaiser Permanente Bernard J. Tyson School of Medicine in Pasadena, which opens its doors July 27 with its first class of 48 students. (KHN, which produces California Healthline, is not affiliated with Kaiser Permanente.)

Narrative medicine trains physicians to care about patients’ singular, lived experiences — how illness is really affecting them, said Dr. Deepthiman Gowda, assistant dean for medical education at the new Kaiser Permanente school. The training may entail a close group reading of creative works such as poetry or literature, or watching dance or a film, or listening to music.

He said there’s also “real, intrinsic value” for patients because a doctor isn’t only being trained to care about the body and medications.

“Literature in its nature is a dive into the experience of living — the triumphs, the joys, the suffering, the anxieties, the tragedies, the confusions, the guilt, the ecstasies of being human, of being alive,” Gowda said. “This is the training our students need if they wish to care for persons and not diseases.”

Dr. Andre Lijoi, a geriatrician at WellSpan York Hospital in Pennsylvania, recently led a virtual session for 20 front-line nurse practitioners who work in nursing homes. Two volunteers recited Mary Oliver’s 1986 poem “Wild Geese,” which reads, “Tell me about despair, yours, and I will tell you mine. Meanwhile the world goes on.”

Sharing the poet’s words helped the nurses relieve their pent-up tensions, enabling them to express their feelings about life and work under COVID-19, Lijoi said.

One participant wrote, “As the world goes on around me I mourn seeing my aging parents, planning my daughter’s wedding, and missing my great niece’s baptism. I wonder, when will life be ‘normal’ again?”

Processing Fear To Provide Better Care

Dr. Naomi Rosenberg, an emergency room physician at Temple University Hospital in Philadelphia, studied narrative medicine at Columbia and teaches it at Temple’s Lewis Katz School of Medicine. The discipline helps her “metabolize” what she takes in while caring for COVID-19 patients, including the fear that comes with having to enter patients’ rooms alone in protective gear, she said.

The training helped her counsel a worried woman who couldn’t visit her sister because the hospital, like others around the country, wasn’t allowing relatives to visit COVID-19-infected patients.

“I’d read stories of Baldwin, Hemingway and Steinbeck about what it feels like to be afraid for someone you love, and recalling those helped me communicate with her with more clarity and compassion,” Rosenberg said. (After a four-day crisis, the sister recovered.)

Dr. Pamela Schaff (right) discusses narrative medicine in the Hoyt Gallery at the Keck School of Medicine of the University of Southern California, as Chioma Moneme, a student in the class of 2020, looks on. (Credit: Chris Shinn)

Close readings can also help students understand the various ways metaphor is used in the medical profession, for good or ill, said Dr. Pamela Schaff, who directs the Keck School’s new master’s program in narrative medicine.

Recently, Schaff led third-year medical students through a critical examination of a journal article that described medicine as a battlefield. The analysis helped student Andrew Tran understand that describing physicians as “warriors” could “promote unrealistic expectations and even depersonalization of us as human beings,” he said.

Something similar happens in the militarized language used to describe cancer, he added: “We say, ‘You’ve got to fight,’ which implies that if you die, you’re somehow a failure.”

In the real world, doctors are often focused narrowly, devoting most of their attention to a patient’s chief complaint. They listen to patients on average for only 11 seconds before interrupting them, according to a 2018 study in the Journal of General Internal Medicine. Narrative medicine seeks to change that.

While listening more carefully may add one more item to a physician’s lengthy “to-do” list, it could also save time in the end, Schaff said.

“If we train physicians to listen well, for metaphor, subtext and more, they can absorb and act on their patients’ stories even if they have limited time,” she said. “Also, we physicians must harness our narrative competence to demand changes in the health care system. Health systems should not mandate 10-minute encounters.”

Telling The Patient’s Whole Story

In practice, narrative medicine has diverse applications. Modern electronic health records, with their templates and prefilled sections, can hamper a doctor’s ability to create meaningful notes, Gowda said. But doctors can counter that by writing notes in language that makes the patient’s struggles come alive, he said.

The school’s curriculum will incorporate a different patient story each week to frame students’ learning. “Instead of, ‘This week, you will learn about stomach cancer,’ we say, ‘This week, we want you to meet Mr. Cardenas,’” Gowda said. “We learn about who he is, his family, his situation, his symptoms, his concerns. We want students to connect medical knowledge with the complexity and sometimes messiness of people’s stories and contexts.”

In preparation for the school’s opening, Gowda and a colleague have been running Friday lunchtime mindfulness and narrative medicine sessions for faculty and staff.

The meetings might include a collective, silent examination of a piece of art, followed by a discussion and shared feelings, said Dr. Marla Law Abrolat, a Permanente Medicine pediatrician in San Bernardino, California, and a faculty director at the new school.

“Young people come to medicine with bright eyes and want to help, then a traditional medical education beats that out of them,” Abrolat said. “We want them to remember patients’ stories that will always be a part of who they are when they leave here.”

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

A Family With Five Doctors & Two COVID Deaths

On the morning of April 1, Dr. Priya Khanna inched her way from the bedroom to the front door, using walls, doors and railings to hold herself up long enough to get to the stretcher waiting outside. She had been battling COVID-19 for five days and was struggling to breathe.

Her mother, also COVID-positive, watched helplessly as EMTs in full personal protective equipment guided Priya into the ambulance. Priya waved to Justin Vandergaag, a childhood friend walking alongside her. “I’ll see you later,” he said.

Ten days earlier, a similar scene unfolded when Priya’s father, Dr. Satyender Dev Khanna, was hospitalized for COVID-19.

The Khannas would soon suffer the most appalling of fates, as the two doctors from the same family encountered an illness against which they were fatally powerless.

Their story reveals the conundrum facing health care workers, who care for their patients while exposing themselves and their loved ones to risk. And it underscores how unprepared U.S. hospitals still were more than a month after news of community transmission of COVID-19 was first detected in the country.

COVID-19 has hit New Jersey hard, particularly in the north where the Khannas live. According to a database maintained by The New York Times, the state has recorded nearly 165,000 confirmed coronavirus cases and more than 12,300 deaths.

News of the pandemic had unsettled Priya, a 43-year-old nephrologist in the town of Glen Ridge. She suffered from a rare autoimmune disorder called small-cell vasculitis, and the medication she took to treat it compromised her immune system. She knew that if she contracted COVID-19 she would become very ill.

Priya, which means “beloved” in Hindi, had decided in college to become a doctor and graduated from Kansas City University of Medicine and Biosciences in 2003. Both her sisters were also doctors. She became certified in both internal medicine and nephrology, opened her own practice and was the director of two dialysis centers.

Priya Khanna (right) with younger sister Anisha Khanna-Sharma. (Courtesy of the Khanna family)

“She navigated the world with kindness and delight,” said a childhood friend, Laura Stanfill. She was “extremely selfless, a fiercely devoted friend and loyal,” said another, Melissa Auriemma. She gave long bear hugs and loved Lizzo, Hello Kitty, designer purses and anyplace with a beach.

Priya’s father fell ill in early March; the family is unsure how. Satyender, 78, was an immigrant from India who came to the U.S. with a medical degree and so little money that he did not know if he could afford the taxi ride to the hospital where he was to start his internship. In the 1980s, he became one of the first doctors in New Jersey to perform laparoscopic surgery, and was a trauma and general surgeon his whole career.

Five days after Satyender became sick, Priya’s mother, Kamlesh, a retired pediatrician, did, too. Priya, who lived with her parents, immediately isolated herself from them. She grew worried about her own health after a patient coughed directly in her face.

On March 20, Satyender was hospitalized, and a day later was placed on a ventilator. As a courtesy to Priya’s mother, the ICU physicians let her see her husband at the hospital he had worked at for more than 35 years. She suited up in her own personal protective equipment (PPE) and held his hand for a few minutes before being ushered away. It was a few weeks before what would have been their 50th anniversary.

“That was the last time she physically saw him alive,” said Dr. Anisha Khanna-Sharma, Priya’s younger sister and a pediatrician. “After that, we could only virtually see him on the iPad.”

Priya herself was taken to Clara Maass medical center, the 427-bed facility where her father was being cared for, on April 1. Because her sister Sughanda, an ER doctor, had her own full-body protective suit, she was able to gain better access than most visitors and found a situation reminiscent of a war zone.

Dr. Priya Khanna (seated) poses with friends Laura Stanfill (from left) Justin Vandergaag and Melissa Auriemma at her sister Anisha’s wedding in 2015. (Courtesy of the Khanna family)

There wasn’t enough proper PPE. Sughanda recalled intervening when the registration clerk, not wearing protective gear, leaned into Priya’s face to ask her questions. Priya didn’t receive a blanket or a pulse oximeter, and was not continuously connected to a patient monitor, the family said.

Sughanda and Anisha took turns FaceTiming with Priya. She was having trouble breathing, despite receiving 100% oxygen, and almost urinated on herself because she was too weak to walk to the common bathroom. She asked for a commode but never got one.

“They didn’t feed her,” said Anisha. “My sister didn’t get a meal at the hospital for the first 2½ days.” Instead, Anisha and Sughanda asked a nurse they knew to deliver food to her, and raised the alarm with hospital executives.

“Providing high-quality patient care is our priority, and that has never wavered even as we continue to treat those who are suffering from the coronavirus,” said spokesperson Stacie Newton. “While we do not comment on individual patients, we can assure you that all of our patients are treated with the utmost dignity and respect and any family concern is treated with attention, discretion, and privacy.”

Priya was weak but still reviewed patient files and texted with her replacement physician up until she went on a ventilator. Meanwhile, her sisters tried valiantly to find treatments. They put Priya and her father on a waitlist for the COVID-19 drug remdesivir. They sought and found hundreds of matches for an experimental treatment in which blood plasma from people who have recovered from COVID-19 is administered to patients.

Yet there were numerous bureaucratic delays. By the time the sisters were able to administer units to Priya and Satyender, it was too late, they said. Although it remains unclear at what point in the course of the illness the unapproved therapy is most helpful, Priya’s sisters are convinced their family could have benefited from earlier treatment.

“I think the doctors and nurses and staff did a phenomenal job in terms of doing what they could with what they had,” Sughanda said. “Was the hospital prepared for this? Absolutely not. Did they have enough resources to treat? Absolutely not. They did not have enough of anything to cover the surge of patients that were coming through the hospital.”

On April 13, Priya passed away, followed by her father on April 21.

After Priya died, Sughanda and Anisha both received packages in the mail of clothing Priya had bought for their children.

Every now and then, Auriemma, the childhood friend, rereads messages she sent Priya while she was in the hospital to cheer her up.

We gotta go to Oregon.

We gotta go out for lunch.

We gotta do our movie date.

“She was an excellent nephrologist. But it was short-lived,” said Kamlesh, Priya’s mother. “She touched so many lives, I can’t even tell you. She was the kindest, sweetest person I ever met in the whole world. I think that’s why God took her away from us. She was an angel.”

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.