7 steps to eliminating the war analogy in cancer care

7 steps to eliminating the war analogy in cancer careFrom 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?

A proposal

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+.

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  • Lisa

    I agree about the use of war analogies in relation to cancer. But I don’t quite understand the jump from war analogies to the use of medical jargon when talking with patients. As a cancer patient, I understand the need for clear explanations and the use of educational material. But to limit language to a 7th or 8th grade level? When I had my first breast biopsy, I was handed a phamplet about breast cancer. It explained staging concepts in simple terms. I found the phamplet next to useless and had to to a lot of research on my own. The tools I’ve found the most useful are on line medical dictionary and the National Cancer Institute web site.

    • subatomicdoc

      Thanks for sharing, Lisa. I agree that for some, oversimplification isn’t adequate. Some patients are very engaged, do research ahead of an office visit, know the terminology or found other resources more helpful. But in my experience, most people are overwhelmed or anxious enough they don’t retain everything I’ve said when I keep it simpler.

      When it’s not enough information, it just takes a little listening on my part to realize that and we can always get more technical, more detailed. In the setting of an online resource, you can always have more sophisticated analogies or details to draw upon. We also may need to account for different learning styles: verbal, visual, tactile.

      Communication is part of the art of medicine. It’s imperfect, it takes practice and humility. Both the war analogy and medicalese (medical language) deserve scrutiny rather than rote acceptance. Itwould be great to have a resource that would help me learn how to best help my patients.

      • Lisa

        Perhaps you could add a section to the analogy data base that would just be a listing of on line resources, sorted by subject. When someone comes across something great, that they find useful, they could add it. I think patients who like to do their own research would appreciate links to sites you consider reliable. I know I spent a lot of time after my diagnosis on google searches, often looking at low quality material. I would have appreciated a list of recommended links.

        • subatomicdoc

          Excellent idea, Lisa. That would be best done by the database administrators (should the idea above every become reality). I learned the hard way the downside of crowdsourcing is lots of spam. Unless you have someone curate, it’s detrimental. So curating links would make a lot of sense.

    • Anne-Marie

      Communication is a process, really. I think it usually takes multiple conversations over time for people to absorb the information they need.

      Although health literacy is a huge issue, I think we need to be careful not to make assumptions by giving everyone the same dumbed-down information. The 1 or 2 lymphoma brochures I was given were so generalized as to be almost meaningless, and written in a sugar-coated “now don’t you worry” tone that was… well, condescending is the best word I can come up with.

      I’ve often thought it would be really beneficial if part of the initial oncology consultation could include an assessment of the patient’s preferences for receiving information. That way the doctor doesn’t have to guess, and the patient doesn’t feel poorly served by information that’s either over their head or too basic to be helpful.

      FWIW, I have never liked the military analogies. Language does matter. I would love to see the conversation reframed.

  • Patient Kit

    As a cancer patient, I have mixed feelings about the war analogies. But maybe that’s because I can easily embrace the role of mighty warrior princess. ;-)

    I think your plain language analogy shared database is a great idea. Personally, I prefer doctors to explain things to me using the medical jargon because it saves me a step in doing further research if I don’t have to figure out the correct scientific name for each analogy on my own. But, thinking of my elderly mom, who can’t remember that a cancer doc is an oncologist or a bone doc is an orthopedist, I think many patients would benefit from these analogies. You docs will have to figure out and/or ask us patients, which kind of patient we are and proceed to communicate accordingly.

    I will say that, when I had a (thankfully benign) lesion in my femur that caused the bone to spontaneously fracture while I was doing nothing more traumatic than walking down the street, my orthopedic surgeon explained that the lesion was something like the perforated edge between postage stamps that made it an easy place to break the stamps apart. That was 12 years ago and I never forgot that analogy (though I went on to learn all kinds of scientific things about bones. ) In fact, when talking about broken bones to other peeps who aren’t docs, I find myself using my own analogies. For example, I remind them that bones aren’t dead like Halloween skeletons but are live organs that hurt when they break and think of a bad toothache and magnify it many times and that’s what my fractured femur felt like – a giant tooth ache in my leg. :-D

    • subatomicdoc

      Thanks for sharing your experience and your thoughts. I think for some people, the war analogy can be motivating and empowering. But not for everyone, and having ways to personalize the discussion would be great. It sounds like your doctor had a helpful analogy that resonated with you.

      • Patient Kit

        I absolutely agree. All patients are different — thankfully, yes? Or how boring would it be if we were all the same? I’m a big fan of good communication skills. I’m lucky that my GYN oncologist is a very good communicator. Weirdly, our earliest conversations seem both vivid and surreal to me a year later. He learned pretty quickly that I am one of those patients who is comforted by more info. Perhaps detailed info makes me feel more in control — if not of what is happening then, at least, of understanding what is happening. But I also have friends who were comforted by knowing as little as possible. As the cliche goes, we all deal with things in our own way. And we need docs who understand that.

        • subatomicdoc

          It sounds like you’ve found some docs that are a good fit. As a doctor, I love the variety in meeting different people. Of course, it would be great if it weren’t around a cancer diagnosis…but I do get to see how I can help make it easier.

  • betsynicoletti

    I agree with this. We “battle” cancer, heroically, but do we “succumb cowardly” to heart disease? “Suffer from” depression? Words are important.

  • RichardMahony

    Define medical ‘jargon’. The use of exact terms in science and technology is only ‘jargon’ to those who refuse to accept that when it comes to mathematics, science and technology, precision in language is essential.

    The problem with medicine, which like engineering is a technology rather than a science, is that the language of medicine too often is imprecise and inconsistent. To take just one example, the difference between a lesion and a tumour, between a tumour and a cancer, is rarely explained in rigorous, precise terms to patients, and this is because it is clear from reading the literature that oncologists themselves cannot always agree on a rigorous, precise definition of these terms that always applies to every case.

    In mathematics, physics and chemistry, the use of precise language is crucial to avoiding confusion. Doctors, of course, have to talk not only to their medical peers but to patients but the solution is for patients to take the trouble to get up to speed on their particular diagnosis and to learn the agreed and accepted medical terms – not for doctors to dumb down and patronise their patients by using inaccurate metaphors that rarely work when examined critically.

    If a patient cannot or will not take the trouble to learn the terms that apply to their condition then so be it. The doctor must then make the best of a bad job. This is no different to an architect, an accountant, or a lawyer having to converse with a customer who cannot or will not make the effort to learn a set of new vocabulary even though it is in their best interest to do so rapidly.

    Generally, in countries like the USA today, we are too quick to let folks off the intellectual hook. This has applied to the USA since WW2, where there is now a well-established long-standing tradition, dating back to the McCarthy era, of contempt and antipathy to intellectuals who refuse to dumb everything down in order to make life easier for those who are too lazy or stupid to learn basic concepts in science and technology.

    • subatomicdoc

      Good points Richard. Medicine is a social science more than a true science. I tend to favor clarity but there are practical barriers. I do think that patients, unlike clients of the other services you mention, are often in a vulnerable position and don’t feel they can ask questions. That makes it harder still. While I understand what you’re trying to say about the US, I think it’s an overly broad generalization about anti-intellectualism seeping into the doctor-patient relationship.

  • Lisa

    I’ve never heard of Google Scholar. I am going to have some spend some time poking around there.

    Initially, I was looking for basic information and as my diagnosis was pretty straightfoward I didn’t feel the need to delve too deeply. After my diagnosis became slightly more complicated, I was able to find one relevant study on PubMed. As that supported what my oncologist said I was satisfied.

    Thing is I wound up becoming an accountant after I dropped out of nursing school (it took one clinical year for me to decide I would never work in a hospital). I have just enough background to understand medical literature if I use a medical dictonary. The one advantage I have is I understand statistical concepts and the concept of risk.

  • buzzkillerjsmith

    I think the phrase is dumb too.

    How about American Expeditionary Force on cancer? How about skirmish on cancer? Maybe the Police Action on cancer? Border incursion on cancer? Liberation Movement? The Cancer Self-Defense Force? Anti-cancer Resistance Front?

  • subatomicdoc

    Thank you for your suggestion, I’m not familiar with that handbook. Good to know there may be some hint that this method would have some benefit.

  • subatomicdoc

    Thanks for sharing your experiences, Cathy. I’m glad to hear you think it may be helpful. It sounds as if you’ve done a good job being involved in your own care and thought about it a lot. I agree that this has to be a grass-roots approach. Hopefully it will ‘take root’ somewhere!