Stories of Medicine: putting “care” back into healthcare

Sarina Lalla is a medical student in the Class of 2020 at McMaster University

 

When McMaster medical students learn about medical conditions in a problem-based setting, we frequently use the mnemonic “DEEPICT” (Definition, Epidemiology, Etiology, Prognosis, Investigations, Clinical presentations, Treatment) to approach them. Medical schools focus on teaching students about these important aspects of diseases; with time and practice, this information can be retained and applied by students to make them better clinicians.

However, there is also value in understanding a disease through the eyes of patients. More specifically, it is critical to recognize how facing an illness and navigating the healthcare system impacts their lives. Patients are the experts on their own experiences, and the knowledge they can present in the form of stories can teach us a lot. While we learn how to interpret information in the form of bloodwork and imaging, patients present first and foremost with a story.

Unfortunately, through our models of learning, patient narratives can be overlooked in a student’s training — particularly if they are stressed, overwhelmed with work, and faced with time constraints. This is a widespread issue in the field.

To bridge the gap between the classroom and the hospital, a group of students at the Michael G. DeGroote School of Medicine have created Stories of Medicine. This project aims to highlight patients’ experiences as they are faced with various diagnoses, treatment options, and management plans.

Alex Pearce, a medical student in the class of 2019 at McMaster University, is the founder of this narrative medicine project. With a Bachelor of Knowledge Integration degree from the University of Waterloo, Pearce is very familiar with epistemology and the importance of different ways of knowing. “By presenting more patient narratives in medical education, we can diversify our epistemological perspectives,” she explains. “I think that this is very important — not only to build empathy, but because knowledge of patient experiences can guide our clinical decisions, too.”

The idea of launching this project came to her during a small group session in pre-clerkship. “I remember our group was going over a certain case and someone mentioned, ‘if X happened, you would just put in an NG tube.’ I was struck by how easy it was for us to imagine providing a treatment without an understanding of the weight that would carry in a patient’s life. It’s easy for medicine to start looking like a flowchart of, ‘When X happens, provide Y,’ and I started thinking about how important it is to be exposed to patient perspectives early in our training to help us recognize the impact our decisions have on patients’ lives.”

Alex reached out to her classmates to see if anybody was interested in this, and a team was born: Serena Arora, Xyza Brual, Sarina Lalla, Rebecca Lauwers, and Jennifer Gordon all stepped up to the plate. “The best part of the project was finding a team of people who were as passionate about patient narratives as I am and who were willing to give up so many afternoons and evenings to meet and make this project the best they could,” says Pearce. They began to bounce ideas and suggestions around, working diligently until Stories of Medicine came to be.

Stories of Medicine is a website that features pages associated with the major fields within medicine; it aims in its own way to build a “Calgary Guide to Narrative Medicine”. On each page is a collection of videos, podcast interviews, images, poems, books, blog posts, and other forms of media featuring patient stories. These are grouped according to the disease or medical procedure that the patient has experienced. The team has attempted to ensure that major conditions and procedures within each specialty are represented. “Finding so many amazing and unique stories and perspectives... this reminded me of what I love about medicine. I think we are so privileged in medicine to be able to close the door in clinic and have such honest conversations with patients about their current issues and stressors and do our best to help them. For me, this was really great to have during the grueling parts of clerkship — a great way to remind myself of why I actually love this work,” Pearce notes.

Additionally, one intersectional page features healthcare experiences from members of vulnerable populations. “We wanted to recognize that there are populations of people whose lived experiences stray from the mainstream based on different aspects of their social location, but didn’t feel it was enough to just try and include them within the categories we had already set up,” Pearce explains. “The truth is that vulnerable populations interact with healthcare differently well before they arrive at a diagnosis, and it is important to highlight that experience as well. We have tried to provide a variety of perspectives from marginalized groups on this page, but we know it is likely impossible that we’ve made a completely exhaustive and representative list.” She emphasizes that she hopes that readers will provide feedback on this page for further improvement.

With Stories of Medicine, our team hopes that by learning more about our patients’ experiences, we can better support them. Moreover, we want our project to help future and current physicians across the world keep in mind the person in front of them — not just the pathophysiology of their disease. We believe that this will ultimately allow us to create more meaningful encounters and provide better care.

“I hope that medical students will gain a deeper appreciation for how their interactions and treatment plans impact patients,” Pearce said. “I hope that it builds a curiosity to not only understand the mechanism of any given treatment, but to also understand the lived experience of the person undergoing that treatment.”

You can find Stories of Medicine at www.storiesofmedicine.com.

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