Documenting illness: Medical students’ films capture how patients, caregivers live with illness
They came without warning and didn’t go away: uncontrollable muscle twitches, weakness in his arms and hands, slurring of speech.
Even before the diagnosis in August 2011, Don Farrell and his wife Joan Darrah had figured out what they were confronting: amyotrophic lateral sclerosis (ALS), a neurological disease that is 100 percent fatal within two to five years after onset of symptoms.
“I can tell you that after the initial shock and grief, one makes a decision to move forward or not,” says Farrell in a documentary made by Penn State College of Medicine students Arissa Torrie and Brian Kinsman.
“It stimulated me to complete my life—not that I know what my life should be—but it stimulated me to finish it out strong, however that may be.”
Told through photographs and audio, “Don Farrell” is one of ten student documentaries that explore in searing and haunting detail the lives of patients facing debilitating diseases and terminal illnesses. Screened on May 1, the “Video Slam: Patient Project Documentary Films” is part of Penn State College of Medicine’s yearlong curriculum focused on giving first-year medical students insights into how patients live with illness.
Portraits of vulnerability and strength, the films capture the struggles of patients and their caregivers as they cope with uncertainty and anger. But the documentaries also reveal the power of the human spirit to adapt to unimaginable and heartbreaking situations.
For Dan Shapiro, chairman of the Department of Humanities who created the video documentary project, the project has personal meaning. A cancer survivor, Shapiro learned firsthand during his treatment that physicians do not always understand the emotional, mental, and physical difficulties patients and caregivers confront in managing illness.
“In people’s homes, students see how challenging it is to keep track of meds or to manage a family member’s care,” Shapiro said. “They see for themselves the innovative adaptations people have made to compensate for illness and the complications—financial, physical, emotional—that people confront.”
To gain that insight, students are required to interview their assigned patients in their homes at least twice. They also have to shadow them to a doctor or clinic visit. In addition, family members, friends, and physicians are interviewed.
Many students go beyond the requirements and include additional visits to patients’ homes or expand even further the circle of interviews, Shapiro said.
Before medical students Corinne Landis and Scott Paradise met Joan Thompson, they had learned in classes about multiple sclerosis, its symptoms, treatment, and prognosis. But talking with Joan, seeing how she negotiates walking and stairs, watching her write a phone number, were eye opening.
“It’s a disease, but it’s also someone’s life, and they are tremendously affected,” Paradise said. “They live daily with what we are learning in the books, and the books don’t give you insight into what illness is.”
The books also omit the stressors that can occur when adult children are taking care of their parents—a lesson students Ilene Tsui and Aaron Cantor learned as they interacted with 82-year-old Marian Boltz. Two of Boltz’s five children have primary responsibility for their mother who suffers from chronic pain, vascular issues and neuropathy, and has limited mobility because of her weight.
Tsui hopes that medical students who see their documentary will gain an appreciation for the sacrifices made by caregivers who are family members.
“As physicians, we will have our own opinion about a care plan, but we have to meet patients where they are and understand that family dynamics can trump our thinking,” Tsui said.
After the first visit to Farrell and Darrah’s home, Torrie remembered asking Kinsman, her project partner, how the couple could be so positive facing a terminal diagnosis. She wondered whether the positive attitude was a coping or denial mechanism.
Uncertain about how to approach the topic, she finally asked Farrell at one of their last visits, “Are you ever angry?” His answer: Yes.
“That made me think how we often focus on medical concerns and less on emotional issues,” Torrie said. “But in order to best help our patients and their caregivers, we need to recognize and be comfortable with their anger about their diagnosis and how that is changing their lifestyles and relationships.”
At the conclusion of the project in May, students host a special patient recognition dinner to honor and thank all of the patients and their families who were involved.