Film shows how clash of cultures affects treatment
Mohammed Kochi was dying of gastric cancer, but he insisted that he was recovering.
“I believe that Allah has taken my disease away completely,” the 59-year-old Afghani immigrant confided to his imam. He had just returned from a hajj, the pilgrimage to Mecca that is one of the holiest rites of Islam, and the trip had left him glowing with joy. “My prayers directly blessed my heart,” he said.
It’s a brief moment in the documentary, “Hold Your Breath,” that reveals the difficulties in overcoming cultural barriers in treating patients.
The film follows Kochi, who years earlier had fled Kabul for Fremont, Calif., as he struggles with whether to pursue chemotherapy following surgery to remove the cancer from his stomach. And it shows in wrenching detail how miscommunication and misunderstanding between people from two very different worlds—medical professionals at Stanford Hospital and Kochi and his Afghani family and friends—lead to decisions that Kochi later appears to regret.
While gripping to watch, the hour-long movie is not intended simply to pull at viewers’ heartstrings but to educate both doctors and patients on how to bridge better the cultural divides that have become commonplace in U.S. hospitals and clinics.
The documentary will premiere at 5 p.m. Jan. 26 at the Lucile Packard Children’s Hospital auditorium, with a reception for the filmmaker to follow. It was produced by Maren Grainger-Monsen, MD, senior research scholar and director of the Biomedical Ethics in Film Program at the medical school’s Center for Biomedical Ethics.
“There’s a a lot of effort to train staff about cultural competency, but people aren’t even sure what the problems are,” remarked Grainger-Monsen. “My goal is to put a human face on the issue.”
“Hold Your Breath” grew out of an earlier project, “Worlds Apart,” in which Grainger-Monsen presents four short videos that document the confusion that can occur when doctors treat patients from cultures different from their own. That project, which included a 14-minute segment on Kochi, is now being used in more than 345 medical schools, residency programs, medical centers and other institutions as a teaching tool to improve cultural sensitivity. (It’s accompanied by a facilitator’s guide for discussions about the programs.)
The expanded film allows Grainger-Monsen, who won an Emmy Award for a previous show, to present Kochi’s story as a complex narrative tracing his battle with cancer, from his first learning he had the disease to his death in 2002. It shows how his feelings about his illness change over time, how medical staff’s assumptions about his beliefs may take his treatment down the wrong road, how the language barrier contributes to the confusion and how Kochi and his family’s difficulty in acknowledging his cancer may have caused him to delay pursuing chemotherapy that might have allowed him to live longer.
“You get to watch the misunderstandings between Mr. Kochi and the providers unfold even though everyone involved is compassionate and intelligent,” said Grainger-Monsen. “You see that there wasn’t one easy answer—no one had done anything ‘wrong’ on either side.”
Still, she noted that one shortcoming stands out: “I think the main reason the misunderstandings took place is that family members were acting as interpreters as opposed to having trained professional medical interpreters.”
The documentary focuses, in particular, on George Fisher, MD, PhD, associate professor of medicine (oncology), who was overseeing Kochi’s treatment. He is shown diligently explaining on several occasions the limited benefits that chemotherapy could offer, but still recommending it—as he would for any member of his own family. When Kochi opted against pursuing the therapy, Fisher understandably concluded that Kochi’s decision was dictated by his religious convictions. And based on what Fisher heard from translators, he had good reason to believe that was the case.
Yet what eventually emerges is that Kochi may have misunderstood what chemotherapy entails and had wrongly believed that it would prevent him from continuing his daily prayers. While it seemed reasonable for Fisher and others on the medical staff to assume that such treatment was against his religion, Grainger-Monsen shows that it was not so black and white. At one point in the documentary, she records Kochi’s imam telling him that Allah commands the patient “to follow the doctor’s orders 100 percent.”
What made the communication still more complicated is that it apparently ran against Afghani cultural mores to tell Kochi his diagnosis of cancer and his bleak prognosis. A family friend who translated for Kochi remarked, “In Afghan culture the doctor doesn't speak directly to the patient and say you will die in two to three months; instead the doctor speaks only to the family and tells them in a way so subtle, they barely understand.”
While doctors nationwide are now required to be trained in cultural competency, Grainger-Monsen observed that the profession is still struggling with how such competency can be achieved. In that regard, she hopes a remark that Fisher makes toward the end of the film—that he wished he had asked Kochi deeper philosophical questions about his desires—stays with viewers. She also noted that it would help if there were more professional translators and liaisons to immigrant communities.
Already the film appears to be raising awareness of the many possibilities for misunderstanding. It was recently shown to a group of journalists who had been in a three-day seminar on health-care disparities as a result of cultural barriers. “The reporters told me that they didn’t buy that there was a problem until they had seen this film,” Grainger-Monsen said.
The film, which may be shown on the Public Broadcasting System later this year, has had a few other screenings, including one for the Kochi family. Grainger-Monsen recalled that before they saw it, they expressed how they still felt angry about the hospital’s treatment of their father.
But after seeing the film the family’s anger was gone. “They told me that they realized that Dr. Fisher had made a real effort to be there for their father,” Grainger-Monsen said. “It made them understand that the problem is in the system.”