The Foglight - When Doctors and Patients Don’t Actually Speak the Same Language

August 2023

Issue # 2 August 2023
In This Issue: Translating the Subtext 

Dear Reader,

When I became a professional medical navigator and advocate, I thought I’d spend a lot of my time explaining medical terms and conditions. As a physician, I knew that patients often didn’t understand what their doctors were saying. I thought it was from a lack of medical education. I was wrong.
 
What I know now is that patients and families need someone to translate the subtext of what the doctor is saying or thinking. It’s as if doctors and patients speak two different languages.

When Doctors and Patients Don’t Actually Speak the Same Language

Doctors and patients don’t always speak the same language. I don’t mean that the doctor might speak English, while the patient and his family speak Spanish or Russian, or Hmong—although that’s an issue, too. I mean that even when the doctor and the patient share a native tongue, they can still speak past each other. Even with the best of intentions, it happens all the time, and it’s one reason a patient advocate can be a huge help. I’ll give you a few examples.

I had a client who had developed some worrisome abscesses and had been septic. For some people with diabetes, their blood vessels are damaged, and they have a harder time clearing up infections. Although she was doing better now, she was understandably terrified—she had been really ill. She was feeling overwhelmed, and my friend told her I could help.

The woman and her husband invited me to a meeting with her surgeon. With watching via video, I saw the surgeon enter her office and begin to ask the woman questions. “Any nausea or vomiting?” the surgeon asked. With that question, I knew immediately that she was looking for signs of sepsis or recurrent infection. She was right to ask this question, but my client did not understand why she was asking, and answered by talking about her constipation. The surgeon had zero interest in her constipation. Her constipation was unpleasant, but it was not life-threatening. She attempted to interrupt my client and bring her back on track. But without answering the question about nausea or vomiting, my client returned to her constipation.

At this point, the doctor literally turned away from her patient and her husband. Her body language was unmistakable: she was bored, even annoyed. She sat back, and it looked as if she was going to stand up to leave. So I jumped in and told the surgeon what she wanted to know. “No,” I said, “she has had no nausea, no vomiting, no fever, no abdominal pain.” Having got the information she needed, the doctor re-engaged. “Oh, okay,” she said, as she settled back in her chair.

The conversation had been heading off the rails; the doctor was frustrated, worried that her patient would never tell her what she needed to know, and instead would continue to waste her time. But we saved the conversation, and now my client could talk to her doctor about her various concerns—including her future prognosis. For her own peace of mind, she needed a conversation with her doctor. And now she got one.

Here’s a second example. Sometimes a doctor will ask a family member if they should be planning on resuscitating a patient because their heart might stop or they might need a ventilator to support their breathing. They’ll ask the family member if the patient’s “code status” should be “full code” (do everything possible to save the patient if they can’t breathe or their heart stops), “DNR” (do not resuscitate if the heart stops), or “DNI” (do not intubate the patient, do not put them on a ventilator). But there is often a subtext to this simple question: that your loved one is really, really sick and close to dying. Or there is another possible subtext: the doctor thinks it’s futile to take certain measures, like intubation, so are you really sure that’s what the patient wants?

A family member may answer the doctor’s question—“Sure, intubate Grandpa,” or “No, don’t take any measures”—without realizing that the doctor, by asking the question, is also giving key information about how close the patient is to dying, how little time they may have left.

And now, a final example. I had a client whose mother, who had dementia, had an uncomfortable sensation of food getting stuck during meals. Her doctor performed an endoscopy, putting a tube down her throat to look into her stomach. I was on the phone with my client when the doctor came in to discuss his findings, which was that the woman's discomfort was nothing serious—it was just that her esophagus had gotten older and a bit stiff, causing a difficult time with certain foods.

The doctor listed several foods that commonly triggered this problem—not necessarily the foods that triggered this woman's symptoms, just foods that often precipitated such symptoms in the population at large. It was clear to me that the doctor thought the son should help his mother figure out which specific foods were involved with her symptoms. But the son was about to cut all the foods the doctor listed out of his mother's diet. When we spoke later that day, I explained to the son that the doctor was recommending symptom-based management, which involved removing only foods that specifically bothered his mother. Once we reviewed what the doctor said, and what he meant, the son understood, and he thanked me for making it easier for his mom to have a diet she would enjoy.

These doctors mean well. In the case of the surgeon, she had other patients waiting, and I’m guessing that she was worried about falling behind. In the case of the doctor asking about code status, the doctor really did want to honor the family’s wishes at a key juncture. With the woman having trouble eating, there was a simple miscommunication about how to manage a relatively benign condition. In each case, the doctors may think it’s obvious what they are implying. But in each case, the patient or his family can miss the point entirely. They don’t know what the doctor is saying, They just don’t speak the same language.

Dr. Gerda Maissel, MD CPE, BCPA

Dr. Maissel is a Board-Certified Physical Medicine
and Rehabilitation physician
and a Board-Certified Patient Advocate
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