Fourth year medical students at Thomas Jefferson University are given real-world insight into the minds of genetic cancer patients as part of their class, Scientific Foundation of Clinical Medicine. The class teaches students about the integration of science into patient diagnosis and treatment, specifically, how cutting edge developments, such as the ability to test for genetic foundations of disease, are translated into patient care.
The class is taught by Dr. David Loren, Assistant Professor of Medicine and Associate Director of Medical Endoscopy in the Division of Gastroenterology and Hepatology at Thomas Jefferson University and Hospitals (TJUH). A few years ago he began bringing in a few patients from the same family with a history of Hereditary Diffuse Gastric Cancer (HDGC) associated with the CDH1 gene mutation.
Sarah Charles, MS, CGC is a genetic counselor for the Jefferson Kimmel Cancer Center Network at TJUH. As part of the lecture, Charles speaks about how genetic testing impacts clinical care. Problems can arise for the patient if the counselor is saying one thing but their doctor is saying something different. She stresses the importance of physicians working with genetic counselors.
“Dr. Loren is a physician who works well with genetic counselors,” Charles said. “Just as ENTs [ear, nose and throat doctors] may work with audiologists or orthopedic surgeons work with physical therapists, physicians need to work with genetic counselors to provide a consistent experience for the patient.”
After Charles gives her presentation to the students, she sits in with the panel of HDGC patients. The patients give a brief background of their family history and tell their personal stories beginning with the decision to undergo genetic testing all the way through surveillance, surgery and feelings about the future.
Dr. Loren urges his students to pay attention to family history when it comes to cancer. Loren explains how a strong prevalence of family cancer should make a physician look at a patient more closely when attempting to make a diagnosis.
“When people get diagnosed with cancer at early ages or there’s too much cancer in the family, scratch your head and say ‘We need to think about this just a little bit more.’ “
But simply sharing their family history isn’t the only reason Loren brings these HDGC patients in to speak with his class. He feels it’s the best way to drive the point home that physicians need to recognize how individuals internalize the information presented to them by doctors and other medical professionals.
“As much as I talk about how a disease process can affect an individual, the impact is less than if they hear it from someone who’s living and breathing and has the insight and understanding to talk about that disease,” said Loren.
He attempts to humanize the process of the patient experience from counseling through testing and ultimately, proper treatment. It shows medical students the many facets of a patient point of view as they consult with various medical professionals.
“The collective experience of individuals who are affected by every aspect of, in this case, a genetically diagnosed disease, affects a patient’s life so profoundly and in so many different areas that I have no way to represent that. The only way to get that across to a person is to have them meet the patient.”
Medical students ordinarily have very limited interaction with patients as part of their coursework. Loren is giving these future physicians a rare opportunity to hear the patient’s perspective. He says the biggest challenge in doing this is getting patients to volunteer for the task.
“It’s a tremendous effort to take time out of their schedules to do it, so it’s an imposition on the patients. It’s a fairly time consuming event to sit for an hour, hour and fifteen minutes, to talk to students. People don’t like to do it so much.”
For patients like Rachel Wick, who lost her mother, grandfather and two great-aunts to stomach cancer in a span of three years, telling her story and helping to educate a new generation of physicians is hardly seen as an imposition.
“To me it’s very worth it. I participate in these panels in the hopes that doctors won’t immediately dismiss a patient’s concern. The first doctor my mother saw pushed her off to a different specialist,” said Wick. “These doctors will remember us, rather than if they read something in a textbook. It gives them more compassion.”
Indeed this is often the case in the mind of many physicians-in-training. The impression left on students after meeting with these patients affected by an inherited cancer syndrome is deep and long lasting.
“I do a lot of teaching, and of all the things that I do, the interaction of patients with students is uniformly the most positive experience that happens in everything that I do.” Loren stressed, “It affects them the most. Because they see how people can be helped by science, or can be helped by physicians.
“These are students who are going to be doctors and they internalize it very personally and they say ‘Wow, I can find these people. I can help these people. I can get these people to the right spot.’ So it’s always very positive. They love it. They appreciate it.”
For Wick and others in her family, the appreciation is mutual. Any opportunity to educate the general public about HDGC is important. The fact that in this case the audience is made up of the next generation of doctors is profoundly significant. More people have a greater understanding of HDGC thanks to Dr. Loren and TJUH for facilitating this experience that truly benefits everyone involved.