By agebuzz Contributing Editor Julie Buyon
Often in my work as a patient advocate, I find myself in the position of being a translator – not from a foreign language into English but rather from medical jargon into plain words. It’s always challenging to understand a lot of new information, especially when the terminology is technical, unfamiliar, and possibly frightening – but that’s a situation we increasingly encounter as we get older and achier!
Few medical schools emphasize communication skills as part of their curriculum, so while a doctor’s ability to diagnose and resolve a medical issue may be superb, his or her ability to explain it all to you may not be at the same level of excellence. If you don’t understand your diagnosis, treatment recommendations, or how to take your medications, your visit to the doctor probably won’t help you recover as quickly or lead to better health.
A Powerhouse Patient wants to leave the doctor’s office knowing the answer to these questions:
-What is my main problem?
-What do I need to do?
-Why is it important for me to do this?
It can be intimidating to visit the doctor, and uncomfortable to admit that we don’t fully understand what’s going on. It can make us feel anxious, confused, and stupid. As I have discussed in every post, the best care comes from partnering with your health care team – they are the medical experts and you are the YOU expert. Part of being the YOU expert is knowing what methods of communication make the most sense to you and let your doctor know what those are.
First, try to get comfortable with admitting that you don’t understand a lot of the medical terms being used, and ask the doctor to explain the information again in plainer language. I have, on occasion, asked my doctors to explain things to me as if I were a 12-year-old. I’d rather start simple and work up to more complexity, and I find that pretending that I am 12 helps the discussion start at a level I know I will likely understand.
And don’t think you’re alone in not understanding “doctor speak”. Nobody does, except people who work in health care. It’s a well-recognized obstacle to good patient care, and there’s even a field known as “health literacy” addressing the ability to communicate and understand health information. In fact, there’s a law about it. The Plain Writing Act of 2010 requires federal agencies to use clear communication that the public can understand and use, including The Centers for Disease Control (CDC). Take a peek at their guidance for communicating with the public. Here’s a great example:
CDC Original Sentence: Wood dust, associated with cancers of the nasal cavities and sinuses, is a known carcinogen for unprotected workers exposed regularly from sanding operations and furniture manufacturing.
Plain Language Sentence: Workers who breathe wood dust from sanding operations and furniture manufacturing can develop cancers in their noses and sinuses.
At a hospital where I once worked, I heard a doctor tell a patient “You have an adenocarcinoma of your esophagus but it should be responsive to treatment.” Translation: “You have a lump in the tube that connects your throat to your stomach. The lump is caused by some cancerous cells that are growing too much. We have some treatments we can try that have worked well for other people with this problem to help them get better.” The plain language version may sound a little simplistic, but armed with that basic understanding, a Powerhouse Patient can begin to formulate some good questions to get more information.
Of course, no matter how plain the language is, if you and your doctor don’t speak the same language fluently make sure you bring someone with you who can serve as a translator.
I love a good analogy. It really helps me understand things, and I know that’s true for many people. The daily pill I take is, as my doctor explains, like a fence between me and cancer. That’s a concept I can wrap my head around.
Analogies work by comparing something we are familiar with (like a fence) to something we are unfamiliar with (medication), giving us a framework to help us understand new or complex information. Many of us have heard comparisons explaining that the heart is like a pump, or that the circulatory system is like pipes throughout our body. In fact, a group of Family Physicians in Pennsylvania keeps a list of analogies their physicians use frequently. For example, comparing hypertension to pressure on pipes: High blood pressure is like having high pressure in a pipe. It damages the pipe, but you often don’t see a problem until it bursts.
Analogies can also put health information into an emotional context. The first time I was diagnosed with cancer, I spoke with a woman who had experienced a similar diagnosis. She told me that several years after her treatment, the illness episode just felt like a dent in her fender. My goal as I went through treatment was to feel the same way about my experience and having that perspective helped me tremendously.
So if you’re having trouble understanding something, ask your doctor to try to explain it to you with an analogy that will help put it in context for you. And if he or she needs some help, send them the link to the analogies list!
Numbers – statistics, rates of disease incidence, disease survival rates – are the way some people make sense of information. If you’re a numbers person, ask your doctor for information in that form, such as appropriate recent studies about your condition. There’s usually plenty out there.
For people less comfortable with numbers, it’s especially important that you ask your doctor to put the data in context so you can better understand. If your doctor tells you that the 5-year survival rate for a kind of cancer is 91%, do you understand that means that of 100 people with that cancer, 91 of them will still be alive 5 years after the cancer was found? Never be embarrassed to ask for something to be explained in a different way!
Show Me: Videos, Visual Aids and Infographics
Some of us, me included, find visuals a big help.
Infographics are a way of visually communicating information in an engaging and concise manner. Here’s a terrific one from the Australian government explaining why social distancing can slow the spread of Covid-19.
Source: Australian Government
Or, consider this: Women giving birth are told how much their cervix has dilated, but since the US isn’t on the metric system most of us have little understanding of what being dilated 4 centimeters means. Well, 4 centimeters is a Ritz Cracker, 8 centimeters is a baseball, and 10 is a bagel. Now I get it!
Tumor sizes are reported in centimeters, but that can be challenging to visualize. The National Cancer Institute has a library of visuals to help explain cancer information, including this helpful visual about tumor size.
Many illness-specific organizations have many visual aids available on their web sites, such as the American Heart Association’s interactive learning tool. And videos can be a great way to get a handle on a complex health topic, such as this one about cholesterol from WebMD. The National Institutes of Health, the FDA, medical societies, and illness-specific organizations (like The American Heart Association) are all rich sources of information graphically represented.
Take Stock and Speak Up!
With so much information about Covid-19 in the news, pay attention to what formats help you best understand what is happening. Is it the video you saw on Facebook, the chart in the newspaper, the animation on your online news site, a magazine article, or something else? Make a note of what works for you in your healthcare notebook as a reminder. Then, at your next doctor’s appointment, let your doctor know what kind of communication works best for you. If he or she can’t supply a video or chart or analogy on the spot, ask that one be sent to you so that you can better understand. That’s one of the things that makes for a great partnership!
Julie Buyon is a palliative care patient advocate. She has professional and personal expertise in assisting people with complex illnesses navigate the health care environment. Julie’s role is to help patients feel empowered, and her agebuzz posts are intended to make sure agebuzz readers have all the tools and info they need to advocate for themselves and their loved ones. Julie would love agebuzz readers to email her at email@example.com with any questions or problems encountered with the health care system, and she will do all she can to address those issues in upcoming blog posts. She also welcomes feedback regarding her advice or recommendations. Read all of Julie’s agebuzz posts here and get in touch with Julie now at firstname.lastname@example.org.