Families Teach Med Students What Textbooks Can't

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Medical school is good at teaching students about what causes diseases and how to treat sick patients. It's not as good at helping aspiring doctors understand the non-medical struggles that patients face, from battling with insurance companies to feeling socially isolated.

So a group of Harvard Medical School students is reaching out to patients and their families to try to learn what textbooks can't teach them about living with illness. Their effort is part of a student-run program called "More to Life Than Genes." It aims to get students out of the classroom and into the lives of people who have genetic disorders.

WBUR's Sacha Pfeiffer reports.


It's lunchtime. Dozens of first- and second-year students at Harvard Medical School pour into a campus conference room and grab free sandwiches, salads and brownies. After they fill their plates they sit at one of the tables scattered around. At most of tables there's already a family sitting down, including a child in a wheelchair. This is a rare chance for the medical students to meet informally with the kinds of patients they might treat someday. Some of the students seem unsure what to say at first. The conversation starts flowing when a father describes a typical night for his son.

RODNEY HEGER: He wakes up four, five, six, seven times, eight times, sometimes nine times a night, where he'll have to get rolled from his back to his side, from his side to his back, go to the bathroom at night, you know, because we've got to use a pee cup. And there are nights like that where eight or nine times leaves us both exhausted when school rolls around, you know?

That's Rodney Heger from Norwell. His 16-year-old son Zachary has Duchenne muscular dystrophy, a fatal genetic disorder that affects only boys and men and causes them to lose muscle function. Zach needs a wheelchair to get around and his father has to help him feed himself and do other basic tasks.

STUDENT: Do kids ever ask you about your condition or what it's like to be in a wheelchair ever?

ZACHARY HEGER: Not really. I don't like to tell them because they usually make fun of me and stuff.


STUDENT: What would you like them to know about what it's like?

ZACHARY HEGER: They should just have a class that teaches them about people in wheelchairs — treat them like they're a normal person and not like an alien.

Getting treated like an alien. It's a window onto Zach's life that these Harvard Medical students might never see if they only meet him in a doctor's office. Over lunch they hear about other aspects of his life, too. How his bed at home is actually a hospital bed. How he needs a personal care attendant. How he takes a shower.

RODNEY HEGER: We installed in our house a — you know when you go get your hair done? You know those sinks that you lean back in? So that he leans back in his wheelchair and we can wash his hair.

GAURAV GULATI: It makes you realize that there's a lot more to what these patients are going through than just what's on their chart and what medicines you're prescribing to them.

Gaurav Gulati is a first-year medical student at Harvard. He says his conversations with the patients and their families were eye-opening.

GULATI: It's been really enlightening to hear how people day-to-day deal with things like what it's like at school or with insurance or how you had to move because there's too many stairs in your house. We're never going to learn that in a genetics class out of a textbook. We're not going to learn it really not even in the hospital because, you know, med students are busy, residents are busy. You don't ever get a sense for what it's like for them at home.

Life at home. Life at school. Financial worries. How a teenage boy in a wheelchair tries to meet girls. These are the daily realities that come up at these voluntary lunches, which coincide with a class on human genetics. The lunches are organized by students themselves. They already know about the genetic mutations that cause disease and the drugs that can ease symptoms. But they want to know more about everyday life for patients and their families.

BRIAN TSENG: I love the fact that I was hearing conversations with parents talking about expenses, insurance issues, school challenges, modifying a home, how much a wheelchair costs.

Brian Tseng is an assistant professor at Harvard Medical School who specializes in pediatric neuromuscular diseases. He says the insight students get from these casual interactions can make them better physicians.

TSENG: These are things that first-year medical students will not get in medical school, and to me that is an incredibly important element of medical school that is missing.

Chensi Ouyang agrees that classroom learning can only teach so much. She's a first-year medical student at Harvard.

OUYANG: I have to say most textbooks are extremely dry. It's not real. You just read it, but you don't feel it, you know? You don't really hear the voices of the people who are suffering. Here you do.

And by hearing those voices, students get a better understanding of the lives of patients — an understanding they hope will make them better and more compassionate doctors.

This program aired on January 8, 2009. The audio for this program is not available.

Sacha Pfeiffer Twitter Host, All Things Considered
Sacha Pfeiffer was formerly the host of WBUR's All Things Considered.