If you had walked into the room and seen her standing there, commanding the attention of her audience with her bright smile and engaging nature, you’d never guess the road she’s walked. Her energy and enthusiasm make it easy to forget she’s endured 21 surgeries, and there’s certainly no sign of the ileostomy bag lying discreetly underneath her dress as she moves about the room, giving her presentation. Evonne Kaplan-Liss, M.D., has battled the impact of a severe case of ulcerative colitis nearly her entire life, but now, she’s making history as the nation’s first-ever medical school dean devoted entirely to patient communication.
“Practicing good medicine is extremely important, to be sure,” Evonne said to the room full of trainees, all interested members of the Fort Worth community hoping to get a first peek at the curriculum she’s written for a brand-new medical school, the Texas Christian University and University of North Texas Health Science Center School of Medicine. “But what can make or break a patient’s experience, and ultimately affects the outcome of their health, is the way a physician communicates and empathizes with them.”
Evonne knows this all too well.
At just 17 years old, Evonne endured a four-month hospital stay to address severe inflammation and ulcers. Evonne’s case was particularly challenging, running the risk of perforating her large intestine. She and her parents were faced with impossible choices, but were encouraged when they were approached by a surgical team who said they had a “state-of-the-art” procedure that could prevent Evonne from requiring an ileostomy bag. Relieved by the notion that their daughter could avoid a childhood with a bag, her family quickly agreed to move forward with the surgery.
“Words matter,” Evonne told the room. “One medical term in a single moment changed the entire trajectory of my life.”
During the next 30 years, Evonne endured 20 more surgeries, all stemming from complications from that initial procedure when she was a 17-year-old. When she and her parents heard the doctors describe the surgery as “state-of-the-art,” they assumed it meant “latest and greatest,” “the very best option,” or “on the cutting-edge of technology.” What they didn’t know was, though the procedure had been performed successfully on adults, Evonne would be one of the few children to have this operation.
“I sunk into a deep depression,” Evonne said. “I was only 17 years old and rather than seeing my entire life ahead of me, I just saw this disease and all it had taken. I didn’t know how I could move forward and pursue my dreams when I was stuck in this cycle of illness and surgery.”
But a chance encounter with a fellow patient changed everything.
While recovering from her latest hospital stay, Evonne flipped on the TV to an NBC program called “This is Your Life.” The reality documentary series surprises featured guests by taking them on a journey through their life, narrated by family and friends. This particular episode was highlighting an NFL kicker named Rolf Benirschke who had recently made a triumphant comeback after battling ulcerative colitis and receiving an ostomy. Upon hearing the familiar diagnosis, Evonne immediately perked up and called her parents into the room just in time for the revelation of Rolf’s narrator: one of Evonne’s beloved doctors.
“That moment was a turning point for me,” Evonne said. “Here’s this healed and whole guy who is out there playing professional football after, not only enduring the same disease I had, but also receiving care from the same doctor that I was currently seeing. It gave me hope. If this is how his life turned out, maybe I didn’t have to give up on what I wanted for myself, too.”
Evonne and Rolf had the chance to meet when Rolf’s team, the then San Diego Chargers, was in Evonne’s hometown of New York City to play the Giants. Evonne’s family attended practice the day before the game and, despite their age difference, the two had an immediate connection, evident as soon as Rolf gave Evonne a delicate hug, knowing exactly how she felt recovering from her procedure.
“We compared surgeries, our pain, our fears and our thoughts,” Evonne said. “He told me how hard it was for him at first to take locker-room showers around his teammates with a bag hanging from his side, but understood that without the bag, he wouldn’t be alive.”
That empathy gave Evonne a new perspective: she could do it. It wouldn’t be easy, and her journey with the disease wasn’t over, but the kindness of this understanding stranger proved to her that she was still in control of her life.
Evonne went on to attend Northwestern University, graduating with a journalism degree. After years working as a young journalist for several nationally syndicated programs, including ABC News’ “Nightline,” Evonne decided to pursue her long-time dream of becoming a doctor. She graduated from the Mount Sinai School of Medicine, completing residencies in both pediatrics and preventive medicine, while also receiving her master’s degree in public health from Columbia University.
Coupling her unique skillsets as both a journalist and a physician with her first-hand knowledge of life as a patient, Evonne has made it her mission to turn pain into progress. She teaches medical professionals how to communicate with patients clearly, effectively and with demonstrated empathy by using improv techniques, narrative reflection and the art of storytelling.
“I loved practicing medicine, but I knew I had walked this road for a purpose, and I wanted to make a greater impact,” Evonne shared with the room. “I knew if I could train doctors in the art of empathy, teach them how to stand in their patients’ shoes and communicate what was happening within their bodies clearly and concisely, that could positively affect untold numbers of people.”
There’s plenty of data to back up Evonne’s observation. Communication errors are to blame in 70 percent of adverse health outcomes, and that number is costly, resulting in more than 2,000 deaths and $1.7 billion in losses in the last five years alone.
Evonne surveyed the trainees about their best experiences with physicians and what specifically made those interactions memorable. A dozen responses from the audience ranged from “he held my hand,” to “I never felt rushed,” or “she asked me questions.” Interestingly, not a single person mentioned a medically specific observation.
Evonne can relate with each of these sentiments, recalling beloved doctors, like the one who appeared on the TV show with Rolf, as well as those who had every intention of delivering positive, effective care, but whether through poor training or personality differences, fell short.
“Most people are surprised to learn that empathy can actually be taught,” Evonne said. “It’s an attribute that’s certainly innate in some, but that doesn’t mean it can’t be developed and cultivated in others.”
Before joining the Texas Christian Univeristy and University of North Texas Health Science Center School of Medicine, Evonne served as the medical program director for the Alan Alda Center for Communicating Science at Stony Brook University. She’s taken her knowledge on the road, conducting workshops for medical professionals around the country and has trained more than 8,000 scientists, physicians and other medical professionals in the art of empathy and communication over the last seven years. Now, she’s taking that knowledge and turning it into a formalized medical curriculum.
“To instill these attributes in physicians from the very beginning is an unbelievable opportunity,” Evonne said. “No other medical school that I’ve seen in the nation has a four-year communications curriculum woven throughout every course and every encounter, and the ripple effect of this is going to have an untold positive impact on the health care community.”
Evonne would know. After all, it was empathy from a stranger that inspired a high school girl to keep going.
Last fall, Texas Christian University hosted a two-day event to share details about the new medical school with interested members of the university community. Evonne spoke about her plans for the communication curriculum, and then departed for a trip home to New York City.
The next day, a colleague shared with Evonne that she ought to meet one of the attendees that had arrived late and missed Evonne’s presentation. He was the father of a current Texas Christian University student and was incredibly interested in the medical communication program, as he had been a chronic patient himself, struggling with an ulcerative colitis diagnosis that nearly robbed him of his NFL career.
It was Rolf.
Unbeknownst to the two of them, Evonne and Rolf had each spent their careers working toward the same mission. Evonne, teaching doctors communication and empathy, and Rolf, developing patient support programs for pharmacy and medical device companies.
Since that day, the two have reconnected, sharing details of their independent work and hopes for the new medical school.
“Because of a kind football player who inspired me so many decades ago, there will be students today who benefit from the lessons we each learned as patients,” Evonne said. “I couldn’t think of a more perfect time for a reunion, and the reminder of how an empathetic gesture can change the course of not just one, but countless lives.”