From a philosophical standpoint, one of the things I hate most about cancer is the use of “war” analogies. The “battle” may mobilize patients and families, but it may also interfere with education and informed decision making. And both patients and clinicians often take recurrence or disease progression personally as a failure. Even when everything is done perfectly, the outcomes aren’t. Why compound grief with the unnecessary stigma of “losing the war”?
Medical jargon also can interfere with retaining information effectively, and as a result, I have come up with plain language descriptions as much as possible. I try to use informative, nonthreatening analogies in explaining cancer and treatment. In my limited experience, people seem more engaged, ask more questions, and seem to retain what I’ve explained better. Here’s an example.
Lymph nodes and lymphatics by analogy
The lymphatic system is often misunderstood. In the setting of explaining the disease, many patients have heard about them for the first time at a cancer diagnosis, usually with referring to the cancer spreading and being bad. The issue comes up not only at first diagnosis but also on post-treatment scans and follow-up visits.
The analogy in use for the lymphatic system is that it’s our body’s security alarm system. It runs throughout the outside (skin) and has wiring (lymphatic channels) that run with the arteries and veins all through the body, allowing your body to detect an infection or injury and mount a fever and the immune response. Lymph nodes are like detection stations for the system. Lymph nodes are positioned throughout the body, but they can be an easy path of least resistance for cancer cells to use to travel.
From my experience, this analogy resonates with people, is a reasonably good representation of the disease process, and lessens fear and anxiety by providing an understandable comparison. It also avoids the fear factor of terms like “invasion” that we often use.
If I’m only discussing lymphatics in the setting of discussing side effects like lymphedema, I will use a highway analogy: arteries and veins are like the interstate, and lymphatics are more like a parallel access road to help move fluid back and forth. If the lymphatics are eliminated, in some cases the interstate can’t handle the traffic and fluid backs up. Lymph node removal sets up the potential for this backup, or lymphedema, which may be brought out by certain stressors that increase traffic. So a goal to limit lymphedema is to avoid those activities or exposures that stress the system.
These are two analogies that have worked well for me. What if we shared all of our best analogies and ways of describing cancer in a healthier way?
Here is my suggestion: Let’s create an online analogy bank as a resource for better communication. Here’s how we could do it:
1. Build a platform. We need a way to share the information, designed to allow us to classify the type of information, i.e., analogies for different scenarios. That might be accomplished with a simple contact form tied to a database. Tagging would also be used for multiple purposes.
2. Share your analogy/story. Do it in plain language, best usually at a 7th to 8thgrade educational level. Simple without medical jargon seems to work best. Submitters should not be anonymous, in my opinion.
3. Search tool to find the right analogy, right context. The best dynamic search tools I’ve seen are SmartPatients.com’s clinical trials search engine and Elance.com’s search engine to find web developers or other freelancers. I’m sure there are others; bottom line — search should be easy to use.
4. Vote analogies up or down. These votes would be subjective, but they may help distinguish what works from what doesn’t. The best analogies may filter to the top for more general use. It would be cool to have separate voting for clinicians and patients/caregivers, but I have no clue how to do that.
5. No comment? I’m mixed on commenting. It can be great, but it’s a massive hassle for spam/trolling. At least at the start, I’d favor voting over comments.
6. Freeware it. If an analogy bank creates great content, share it. Rather than trying to make it proprietary, I’d favor using a Creative Commons license, which allows for noncommercial use/tweaks with attribution.
7. Remix it offline. For the stories that resonate best with patients, use it in the exam room. Make a pamphlet. Use it in an educational video or audiotape.
What analogies do you use that help make it easier to explain medical concepts to your patients? Please consider sharing them and your thoughts on this proposal for a database.
Let’s make sense, not war.
Matthew Katz is a radiation oncologist. He blogs for ASCO Connection and can be found on Twitter @subatomicdoc and Google+.