On a cold January morning in 2014, Renee Nicholson received a call with a unique request. A local doctor was searching for a writer who could help one of his patients. Nicholson, an assistant professor in the West Virginia University Multidisciplinary and Interdisciplinary Studies programs, fit that requirement.
The doctor said, ‘I need a creative writer.’ Which is weird, because usually it’s the creative writer that needs the doctor,” she joked.
After more than 26 years of service at WVU, Jamie Shumway wanted to write his memoirs. He had served as associate dean of medical education at the University and received the title of emeritus professor of medicine.
The only problem was that Shumway was almost completely immobile. Lou Gehrig’s disease — also known as ALS — left him with limited mobility and confined to a wheelchair. He spoke in gradually fading tones, nearly whispers. He was unable to lift his arms and operated his chair with a special joystick.
Not that this dampened his spirits. Shumway had lived a life to its fullest – travelling the globe, pursuing his career and falling in love — all trademarks of a life that was not enjoyed quietly.
If he were going to finish his project, he was going to need help.
Nicholson didn’t realize it, but she had just dipped her toes into a relatively new field of care called narrative medicine. A multidisciplinary approach to care, narrative medicine factors in an empathetic approach to patients, not just to their medical conditions. Such a benefit, experts say, can improve the quality of care and recovery.
Nicholson’s creative works have appeared in a number of literary publications and anthologies, and her own struggles with rheumatoid arthritis made her natural fit for the project.
When the two met, Shumway already had 500 pages of a transcript he and his family had assembled. He wanted to know if she would be able to help him. Although she hadn’t written anything like it before, she agreed.
Shumway was in palliative care — care given to patients with often-terminal illnesses that offers some comfort in their final months. With time precious, the pair met twice a week for two hours at a time.
“Jamie was not a ‘woe is me’ kind of guy,” Nicholson said. “He was productive, and really excited about writing his memoir. He had a smile that lit up the room.”
Nicholson took the transcripts and the stories shared during their meetings and crafted them into a narrative, working and reworking them, adding remembered stories and clarifying details. As the months went on, Shumway’s voice grew softer and more difficult to understand, until Nicholson says she couldn’t help but lean in to hear his stories.
Nicholson pushed aside her own work to focus on this project, knowing their time together was limited.
“It was his passion to have this book so it would be there for people in his family yet to come and his friends, but also I think for people to know the person he was before his disease,” she said.
Once all of the stories had been told and all of the details added, with the help of Shumway’s friends and family, Nicholson presented Shumway with a 250-page memoir of his life. With the help of his wife, who read the passages aloud to him, Shumway heard his story told as he wanted to be remembered: vibrant and full of life.
Shortly after they finished reading his memoir, Shumway passed away.
The use of narrative medicine, patient care advocates say, has become more prevalent, helping to honor the stories of illness and also enabling doctors to be more empathic, connecting more with their patients’ identity while helping patients express their needs more effectively.
“Narrative medicine is a way of tackling medical themes and subjects that’s not as structured in the hard sciences and allows you to really get into more subjective parts of the medical experience, which don’t lend themselves well to a randomized control trial,” said Matt Smith, M.D., associate professor of neurology and neuroscience at the WVU School of Medicine.
Using narratives to help terminally ill patients reflects a shift toward patient-oriented care. Students with humanities backgrounds are being welcomed into medical schools, with previous science-based requirements waived in order to admit those who have taken a different route and have different perspectives.
“The biggest thing [about narrative medicine] is that it actually humanizes you to the plight of the patient,” Smith said.
“Unfortunately, a lot of times, physicians like to believe that we have all these great answers and we can do great things — and that is often true — but realistically medicine is still an art that’s based on science and the primary goal is to relieve suffering.”
“Often that relief of suffering doesn’t come from science, it comes from empathy and therapeutic presence. I think the humanities lend themselves to that much more than the sciences that we traditionally emphasize to students and trainees.”
The shift toward encouraging students headed to medical school to study the humanities is evident at the West Virginia University School of Medicine, with students finding that a background in the humanities is beneficial to their application. These skills are useful for medical students to have during not only medical school, but on into their practice.
“There’s so much that makes a good physician, like well-roundedness and a greater understanding of how medicine and society work together and impact each other. It’s important for incoming students and residents to understand,” said Leila Famouri, a third-year medical student at WVU.
Often, it is their focus and experience as an undergraduate that helps students determine whether they want to become a physician or how they want to shape their practice. Studying outside the traditional hard sciences, Famouri said, exposes students to a variety of perspectives they may not otherwise see, both culturally and ideologically.
“From my experience, medical school admissions offices are focusing more on bringing in diverse voices, which is really great,” said Edward Hamrick, a second-year medical student at WVU. “There are people who are history majors and people who are English majors. It’s not all biology and chemistry [majors] in our class.”
Hamrick worked as a tutor in the WVU Department of English Writing Center — now the Eberly Writing Studio — as an undergraduate. That experience, he said, helped define the type of physician he wants to become. Often, patients have difficulty understanding the proper use of their prescriptions or courses of treatment, and Hamrick says learning to communicate with a diverse group of students has translated into better teaching skills as a medical student and future physician.
“One of the best things about working there is that I got to work with a lot of [English as a Second Language] students. I have stronger cultural competency from working at the Writing Center. I am also much more comfortable working with someone whose culture is different from mine,” Hamrick added.
Eberly College graduates said those who major or minor in English, philosophy or history can develop stronger critical thinking and communications skills in preparation for life as a medical student.
“I decided to major in philosophy after taking the Healthcare Ethics course, which many pre-med students take,” said Dr. Allison Lastinger, an Infectious Disease Fellow at WVU who majored in biology and philosophy as an undergraduate student.
“That class helped me understand that I would be a better physician if I became knowledgeable in subjects beyond the basic sciences. In school, I always enjoyed science, but I also loved English and history so philosophy was a natural choice for me.”
That background, she said, comes through in her medical career now as she considers different patient diagnoses, weighs treatment options and helps patients determine their best course of care.
“The curriculum in biology was very demanding because of the long hours in lecture, in the lab. I had to do a lot of memorization — although not as much as I would later in medical school — and many classes were in a lecture format with relatively few discussions,” Lastinger said.
“In philosophy classes on the other hand, students are rewarded for arguing and questioning — there are no right or wrong answers, there are arguments that are better articulated than others.”
For patients the shift to a more humanities-inclusive environment is helping to provide meaning, context and perspective on medical conditions.
Nicholson is collaborating with Dr. Carl Grey, an assistant professor in the WVU School of Medicine, to launch a two-year pilot program at the WVU Mary Babb Randolph Infusion Center. The program measures how expressive writing by lung and colon cancer patients helps with quality of life, and how it helps patients have meaningful discussions about advance care planning.
She’s also working with Jamie Shumway’s family to continue editing his memoir, and frequently speaks on the benefits of narrative medicine in eldercare.
Students who plan to attend medical school must also take into consideration what they can do to be stronger students, better doctors and more compassionate practitioners when it comes to patient-centered care, medical experts say.
Whether it is through helping patients tell their stories or listening carefully to their symptoms and concerns, the humanities have a firm place in the medical field.
“I would highly encourage any pre-medical student to broaden their horizons in terms of what they choose to experience in their undergrad years,” Famouri said.
“I know a lot of people who wouldn’t take more humanities-based courses — whether it’s languages, philosophy, religious studies or international studies — because they thought it wasn’t going to be useful in medicine. They thought it was all about the basic sciences, but I would definitely urge them that that’s not the case. It gives you a unique perspective on the world, and that’s going to impact the kind of physician you become.”