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Onc talk: Helping patients know their diseases inside and out
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On a weekend mid-morning, I was flipping through radio stations as I drove to our local farmer’s market. I finally settled on National Public Radio’s “Car Talk” and treated myself to a few minutes of Click and Clack for the rest of my drive. Many of you undoubtedly are familiar with the two car gurus — brothers, MIT grads, hosts of a popular call-in radio show, and experts about all things cars. I marveled at their diagnostic skills, as they quickly pinpointed their callers’ problems, one after another, sight unseen, with little to no objective data to go by. I remembered a colleague joking that he wished he could be half the diagnostician as a doctor that Click and Clack were as automotive experts.
What struck me that morning, though, was how informed and perceptive the callers were about their cars — and how adept Click and Clack were about breaking down very complex problems into digestible information that their callers could understand. I started to think about the parallels between a car and a human body — and began to think about oncology and patient education in a new way. Could one imagine an NPR call-in show with an oncologist answering questions from patients and family members?
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When I was a senior resident — having been trained in good hospitals in internal medicine and pediatrics — many of the concepts of clinical oncology were still pretty foreign to me and even several of my supervising attendings. We struggled to understand our patients’ prognoses, and we viewed with skepticism the decisions to treat some of our older patients who had incurable diseases and other medical problems. I think this was because we didn’t clearly understand the subtleties of decision-making in clinical oncology — or the benefits that our patients might realize with certain kinds of treatment, palliative or otherwise, even when cure wasn’t a possibility.
I don’t think it was until part of the way through my first year of fellowship that I finally started to “get it” — when I began to think not just as an internist, but as an oncologist. And in reflecting back on educational principles, I understood that this was because through those first few months I had developed — through exposure and repetition — a context in which to assimilate the facts and concepts of the discipline.
If it was that difficult for me to grasp the tenets of clinical oncology after four years of medical school and another four of residency then what must it be like for my patients? In the clinic, we try to teach our patients what they need to know to take care of themselves and to live with their diseases, as hard as it may be, but what do they really understand? Do they know their bodies and their afflictions in the same way that many of Click and Clack’s callers know their cars?
After reading one of my columns, Dr. Richard Frank, the head of oncology at Norwalk Hospital in Connecticut, mailed me a copy of his recent book, Fighting Cancer with Knowledge and Hope. Conveniently, I was traveling to Boston on a plane around that time and I had a chance to read through it. Admittedly, I’m not an expert in patient education or health communication, and I’m not familiar with other books in this genre, but I really liked Dr. Frank’s book and thought it worth mentioning in this column.
The reason has to do with what I’ve talked about so far — in this book, the author provides a framework to help the reader understand the basics, all of the basics, about clinical oncology so that the reader can know his or her own disease in context. It makes sense, given the author’s background — he was previously a basic scientist at Memorial Sloan Kettering and was used to explaining highly complex biological processes to trainees. In the sciences, one has to know the background to understand the problem at hand.
I think that the approach in this book is a little different than the usual approach in clinic, for two reasons. First, there’s clearly far more that a reader could learn through thoughtful reflection upon 200 pages of printed material than via the time limitations of a clinic visit. But second, and this is where I was most intrigued, the idea here is that the learner needs to go through the whole course to master a topic. In addressing all issues — TNM staging, cancer biology, metastasis, diet, exercise, the goals of treatment, successful survivorship — the author anticipates common questions, addresses frequent misconceptions and provides thoughtful explanation throughout. Even more provocative, as the title implies, is that “knowledge” is as equal an ally in the battle against cancer as is “hope.”
I’m not sure how one would test these hypotheses: By acquiring a deeper repertoire of general cancer knowledge, are patients more hopeful? Do they live better? I don’t know the answers, but I think that interested patients could learn a lot from reading Dr. Frank’s book. And, if they would then be able to push their doctors with the kinds of insightful questions that Click and Clack regularly get from their listeners, I think that this could only be a good thing for all involved.
William Wood, MD, is a third-year hematology/oncology fellow at the University of North Carolina Chapel Hill and is a member of the HemOnc Today Editorial Board.