Commentary by Dan Shapiro, Ph.D., Director, Medical Humanities Program, University of Arizona College of Medicine
Last year I asked 8 medical students to make films about patients. In pairs, they spent 8 months visiting and filming a patient and filming their real lives. They had to make at least three visits (most made 5-6), interview someone else in the patient’s life, go to a medical visit, and capture how the patient adhered, or failed to adhere, to the medical regimen. In fact, they went to home visits, birthday parties, festivals, sat in waiting rooms and met with a variety of health professionals. Then we edited their videos down to 7 minutes and showed them publicly and then in the curriculum.
Here’s the idea behind the project. Our medical school curricula have evolved, but were largely constructed between 1910 and 1950 when most patients presented with acute illnesses. Lengths of stay averaged more than three weeks in some hospitals and the medical trainee could watch, first hand, the entire illness experience from start to finish. Now, we spend 75% of our health care dollars on chronic illnesses and yet our trainees only see a smidgeon of the patient’s life.
In 1987 I was diagnosed with Hodgkin’s Disease and spent the next five years in and out of treatment. I had a few relapses, a bone marrow transplant, and more chemotherapy and radiation than one person should be allowed to enjoy. Along the way, I met a lot of physicians. While they were pleasant and competent, few had any idea of what it was like to live with the disease and its harsh treatments. And if they’d had a better idea of what it was really like to live with illness — they could have done a better job of preparing me for the predictable psychological and physical challenges I endured.
So, a few years ago I was editing a home vacation movie (new macintosh software gave all of us access to great editing software) when I noticed that there were things on the tape I hadn’t seen when I’d been taping the experience. I also observed that the act of editing is time consuming and requires careful thought — creating an organized narrative means understanding the important and less important parts of a person’s story. That’s where the idea came from.
We made four brief films including a woman with metastatic breast cancer, a young man with AIDS, a family coping with juvenile onset diabetes, and a woman living with a head injury, status post motor vehicle accident 25 years ago (in which her daughter was killed). While 8 data points are hardly convincing, to a person the medical students described this is as highly impacting experience and as of this writing I have 19 students signed up for this year’s project. They’ll likely work in groups of two or three.
Consider some of the issues portrayed on the films: Some are practical, such as, How do you get a six year old child to take a needle regularly? Which approaches to adhering to complex mediclal regimen work the best? And some are psychological, such as, How do you cope with the question of why me? How do you keep going when you’re convinced you’re about to die?
Here’s the bottom line:
Until our medical training systems realign to focus more energy on prevention and care of the patient with chronic illness, it behooves us to invite articulate patients to teach our students — our physician teachers have part of the story AND our patient experts have part of the story.
I’ll step off this little soap box now. Thanks for reading my diatribe.
Please send comments and questions to this blog, and feel free to e-mail Dan Shapiro at firstname.lastname@example.org