Medical Language and Other Barriers

Sometimes doctors communicate and help less than we think we do

The Edwin Smith Papyrus; the world’s oldest surviving surgical text. Written about 1600 BC.

I was talking to an older woman about her rather complicated, newly diagnosed medical condition. It was added on top of her already complicated list, including chronic kidney disease, heart disease and lung disease.

A CT scan read by the radiologist left me trying to parse out the words everyone expects with every test, every scan, every Google search. The words “mass,” “tumor,” “cancer.”

Older faces are less shocked than the young when they hear those terrible words, but I think that inside, their hearts race in fear also. They ask themselves, or God, “as if the rest wasn’t enough? Why this?” They, too, want every available minute with the people they love.

(They are the same young people as ever, but in old people suits, you know.)

She asked exactly what I meant. She was intelligent but I was speaking a foreign language. “Medicalease” is it’s own tongue, with dialects and subdialects based on specialty and anatomy, disease classification, drug and surgery.

“The thing is, there’s a mass, or a tumor that is (yes, ma’am, maybe cancer) and it’s on the edge of the kidney and, well there’s a kind of clot there. But our urologist, the kidney specialist here, says that it’s too complicated and so we have to send you to a specialist (a few hours away) who is a “uro-oncology” specialist. But you’ll need an MRI…so we’ll have to make some calls and arrange for them give you and appointment and then you can drive up and have the consultation.”

The look on her face, and on her husband’s face, was one of exhaustion and confusion. Modern medicine is crazy complicated and the truth is, it’s hard to communicate medical conditions, therapies, plans and prognoses to folks outside medicine (but stuck inside medicine due to illness, poor flies in amber). Sometimes it’s hard for those of us in medicine to understand!

She probably heard something like: “Blah, blah, blah, tumor, blah, blah cancer, blah blah procedure, blah, travel, blah ma’am.” Not that she was stupid. Just that she was probably terrified.

After I tried to explain the findings, it was down to “what to do next.” She and her husband just didn’t have the resources or available help to travel far away for care. They were older, and dependent on family members who work. I could see that it was going to be challenging. I felt terrible. I felt powerless. This was one of those situations where the “social determinants of health” was front and center.

In our valient attempts to apply modern medicine to the inevitable afflictions of human life, in particular those that strike in later years, and impact those who live in more remote areas, we so easily forget that sometimes, what we offer is as difficult as the disease.

We offer diagnoses that may or may not be treatable, described in words that may not be understandable, to people who often find the whole thing unimaginable and unaffordable. Then we try to send them down the river of medical therapy that is barely navigable without help.

Often they simply can’t do what we ask.

Oh, we become frustrated and call them noncompliant. But real world issues stand in the way. The seniors, especially, may not be able to use MyChart, or office websites, or text messages. They may have difficulty hearing phone calls. They may have no one to take them hours from home for appointments or procedures and if they do go are often alone and afraid.

They may need to stay with a sick relative or a treasured pet.

They may be helping to raise their grandchildren…or great grandchildren.

I don’t know the answer in these situations.

I love what we can do for people, when it really helps them.

On the other hand, I sometimes wonder if we were happier before tests and scans, when we just became, at a certain point, ill and progressively weaker. Each day, perhaps, hoping that the next would be better. There was suffering and I don’t really want to go back to it. But we were not as bound to the certainty of terrible diagnoses.

It was probably easier to hope for miracles.

I’ve been thinking about “bedside manners” or as I’ve come to think of them, “bedside mannerisms.”

Part of that, quite aside from the glorious modern capacities of medicine, is that we have to simply learn to talk to people in a way they understand, in language that makes sense.

And we have to come up with a plan for them that illustrates that we understand their lives and what they can, and cannot do. The perfect plan in our minds might be fully impossible in their lives.

But as in so many things, perfect is often the enemy of good.

So let us speak clearly, let us listen fully, let us understand the lives of the men and women before us, hurting and afraid.

After all, that’s where the best medicine begins.