It's a simple and beautiful moment. A mother holds her tiny baby and the father sings a gentle harmony to the tune of "Twinkle, Twinkle Little Star." This baby, however, is hooked up to a thin tube transporting essential nutrients to her heart and this lullaby is sung in the hushed silence of the Neonatal Intensive Care Unit.
Lillian Austin Hook was born just over a month ago, at 31 weeks, and had surgery for a triple intestinal atresia — a defect that causes obstructions in the intestines — three days later.
Since her arrival in the NICU, Lillian and her parents, Benjamin and Kara, are joined three days a week by Emily Pivovarnik, a NICU music therapist employed by MU. Pivovarnik sits in a chair directly in front of Kara and plucks her guitar softly, humming a litany of meditative lullabies while instructing Lillian’s parents to massage her head, limbs and back.
Pivovarnik’s bright smile and calming voice in an otherwise sterile environment is an example of a quietly growing trend in medicine. An increasing number of medical providers are weaving art into their medical work.
The arts and sciences are sometimes treated as separate spheres, and the humanities are often treated as a second priority in medical training. But supporters of the use of art in medicine say the sick and dying — and those who care for them — need the humanities.
This ritual is scientifically backed. The type of music therapy that Pivovarnik practices helps ease distressed infants out of their fight-or-flight response and counteracts the negative stimulation of the hospital environment. With each infant she sings to, Pivovarnik watches the monitor next to the incubator, neon lines and numbers showing the infants’ heart rates calming and their blood oxygen levels rising right before her eyes.
Ever since Pivovarnik took up piano lessons as a teenager, healing and music have gone hand-in-hand. At the time, her grandfather was in the nursing home with dementia. She would visit him every day after school, bringing her portable keyboard to practice and staying until visiting hours were over. As his memory faded, he would still light up when Pivovarnik played his favorite song, “Walking in a Winter Wonderland.”
“It was amazing how I would start to play, and he would hum along after not knowing who I was,” she said.
Pivovarnik came to MU in part because it was one of the few institutions in the country with a program offering training in NICU music therapy. She also spends time in the University Hospital working with older kids, playing quirky songs to encourage them to get up and play or helping them imagine dinosaurs and magic carpet rides to distract them from pain and anxiety. With her words and songs, kids use their imagination to escape the confines of the hospital. Most of her work is in the NICU with infants, where she hums simple, soft sequences to protect their delicate hearing.
“I really love something about helping someone that’s not going to remember it. Shaping their lives when they’re so little is just really special to me,” Pivovarnik said.
From arts to medicine and back again
When Damon Coyle was young, he told his parents that he wanted to be a “doctor artist.” To this day, he doesn’t know what he meant by that, but his work at the Shelden Simulation Center, where he crafts anatomically-correct sculptures that look and bleed like real body parts, “doctor artist” is an apt description of what he does.
Coyle is a Simulation Innovation Specialist, which means he is an inventor who engineers medical trainers, products designed to teach doctors and nurses a specific skill instead of practicing — and possibly botching — those procedures on a patient. He draws from three years of medical school and a fine-arts sculpture background to design dozens of trainers. They range from infant arms with translucent silicone skin that can be pricked with an IV to life-size skulls that imitate the feeling of operating on real bone.
Both arts and science are fused into every step of Coyle’s creative process. Doctors present him with a skill that needs to be trained and he works through his designs on paper. Then he moves to clay.
“This is where the real art comes in,” Coyle said. “Traditional fine art is when a ball of clay is in front of me and a ball of clay will transform into anatomical forms.”
Coyle’s scientific curiosity has always been rooted in his aptitude for art. He came from a family of drawers, with a grandfather who was an illustrator and two older brothers who always had pens in their hands. Coyle took an anatomy class in high school so that he could learn to more accurately draw the human form. He studied biology pre-med with a minor in art at MU, but eventually realized the medical school path wasn’t right for him.
“I soon realized that there was no time to practice what brought me real fulfillment,” Coyle said. “I had to put aside all art.”
Now Coyle has plenty of time to pursue his art, like the “chronic skill collector” that he is. At home, he has a woodworking shop where he carves fantasy-themed tobacco pipes. He’s not a big smoker, but he is a big J.R.R. Tolkien fan. He also makes keepsake puzzle boxes and furniture, brews his own mead, and has plans to someday build a bronze foundry.
As an undergraduate, Coyle’s interest in sculpture was born out of the realization that while canvas and paper have limited lifespans, bronze lives almost indefinitely. His new sculptures bend and bleed and live on in a different way, training future doctors and nurses with products that bridge the gap between the school and the clinic. Likewise, Coyle straddles the space between medicine and the arts, pouring hours each day into capturing the likeness of the human body.
“I think there needs to be more of an understanding that art and science aren’t these two separate industries or ideas,” Coyle said. “They really do coalesce and converge in so many different ways.”
Medicine in a messy world
For decades, doctors have been educated in a system that cut them off from the humanities to the detriment of both themselves and their patients. Robin Blake, a former MU medical school professor who worked as a physician for 30 years, went to medical school in the late '60s at Washington University in St. Louis. The closest thing to the humanities in their curriculum was a short course on the history of medicine that was taught by the librarian for one hour each week. It was lowest on the list of priorities, and the students knew that.
However, it didn’t take Blake long to notice the gaps in his medical education. He could list symptoms and treatments from the books, but he lacked some of the soft skills that would help him understand his patients. This was particularly evident when he spent four years working in an impoverished community in Appalachia.
“I began to realize that I knew how to diagnose and treat congestive heart failure, but I didn’t know how to deal with family violence, or family dysfunction, or kids who had terrible home situations,” Blake said. He realized that without a full understanding of how a condition like heart failure affects every aspect of a person’s life, he wasn’t really understanding the condition at all.
It’s these sort of questions and deficiencies that an emerging field called “medical humanities” tries to remedy. It proposes reforms in medical training that would use the humanities to train skills like critical thinking and empathy. In this approach to medicine, the patient is at the center and their story matters, Ingrid Berg said. Berg is a hospice and palliative care fellow at MU who is also pursuing a master’s degree in medical humanities.
Once upon a time, doctors tended to have a more rounded education that included many areas of study. At the turn of the 20th century, efforts to make medical practice more rigorous caused the field to become professionalized and standardized. Now, medical training is very procedural and technical.
“That rigidity can help with learning, with rote memorization, but it doesn’t necessarily help us think critically,” Berg said. “And it certainly doesn’t help us remember the humanity in what we do.”
The best doctors know that there is much more to medical care than following formulaic treatments. Stacy Turpin Cheavens, a medical illustrator employed by MU’s school of medicine, works closely with orthopaedic surgeons, physicians and researchers who need illustrations for patient education or academic papers. They bring her their rudimentary sketches and ideas and she uses her models and anatomy books to recreate the area of the body clearly and realistically.
In her work Cheavens has developed a new appreciation for the work of physicians. She sees them adapt their treatment based on a patient’s lifestyle or body. This is the kind of personalized approach that the “patient-centered care” of medical humanities demands.
“I’ve learned that science is an art. There’s not one set solution for every patient,” Cheavens said.
Cheavens herself works in a unique niche where art is clearly in the service of medicine. Like Coyle, she grew up with interests in science and art. She majored in biology at MU, minoring in art, and deferred her enrollment in a medical illustration master’s program to go to art school in Italy. At the Florence Academy of Art, she helped develop an écorché class. Écorché means “without skin,” referring to art where bodies are depicted with the musculature revealed. In her class, artists used sculpture as a vehicle to learn anatomy.
Part of her job now is to take photos from surgeries and wash the blood away, to “make it pretty” and easier to see what is happening in the patients’ bodies. In this way, she finds herself functioning as a bridge between patients and doctors.
“(My drawings allow) them to see the beauty of what’s going on,” Cheavens said. “It also kind of makes them appreciate the whole process of how their body works and how medicine is able to put things back together.”
"Breadth of life experience"
Robin Blake turned to the humanities in retirement, driven by the conviction that physicians should interact with art. His father worked as an artist for 75 years, so art had always been in his periphery. He watched Great Courses lectures, took university classes, read books and visited art museums, fashioning himself into an amateur art historian.
Now he leads an hour-long Zoom call every Friday with medical students and residents on the palliative care service. He guides them through structured discussions of several paintings in an activity that incorporates something called visual thinking strategy. They focus on observing and describing what they see, even things that don’t seem important at first. This is a research-backed activity meant to increase skills in observation, interpretation, analysis and synthesis — more of those less-appreciated but critical soft skills that physicians are asked to apply every day.
“I’ve learned that science is an art. There’s not one set solution for every patient,” Cheavens said.
Berg joins these Zoom calls whenever she can. She is somewhat of a poster-child for the medical humanities, tracing her interest back to shelves of beautiful books and a mother who had a master’s degree in German language and literature. Berg took a winding path toward a medical career, dabbling in journalism and studying in what was then Czechoslovakia shortly after the fall of the Berlin wall. A stint working in the health and fitness industry kindled an interest in the human body which led her to study kinesiology and continue to medical school.
“That breadth of life experience, that sort of marinating as a person … those were several seeds that were planted in me,” Berg said.
She attended medical school in suburban Chicago and moved to rural Wisconsin, where she worked as both a general practitioner and hospitalist. Then the pandemic came and stole the sense of satisfaction she once found in her work, eroding patient-doctor relationships and presenting a reality that she was not trained to face.
“COVID did many things, but I think it certainly brought into sharp relief how little attention we give to thinking about end-of-life and our mortality,” Berg said. “We certainly were not prepared for isolated end-of-life where folks were completely cut off from their loved ones. So it was absolutely devastating.”
If doctors had more humanities training, universally, Berg thinks many things could have been different. If they had known more about the history of medicine, for instance, they would have known that the 1918 Spanish flu pandemic killed 50 million people and so a deadly respiratory virus was not, in fact, unprecedented. They would have known that determined resistance to vaccines was not new. A broader perspective might have alerted them to possibilities contained in the pandemic uncertainty.
As advocates for the medical humanities insist, the arts heal the healers and provide a buffer against uncertainty. The arts run like a thread of humanity through a cold world of IV bags and tubes and beeping machines. It invites medical providers to listen to their patients' stories and care for them accordingly.
It’s a simple and beautiful moment. One of Berg’s hospice patients loves the poetry of Mary Oliver, so Berg calls her husband and he brings a book of Oliver’s work to the hospital. The poem, the art, is a brief respite from the pain.
Berg and others will continue to fight for humanities-informed, patient-centered health care until the impulse to offer poems to the dying is as automatic as parents singing to their premature daughter.
It’s what Benjamin and Kara Hook do, and Lillian responds.
Near the end of Lillian’s music therapy session, the baby reaches red, wrinkled hands toward her mother in a hug-like gesture. As the music plays, a sleepy Lillian smiles eight times.
For the audio transcript, click here.
