Recently, the British Medical Journal (BMJ) ran a compelling opinion piece1 from Boston physician Dr. Abraar Karan on why some patients just don’t seem to understand what their doctors are telling them. Here’s how he opens his essay:
“‘Why am I here?’ Mrs. S looked up at me for the first time since I had entered the room and begun speaking to her. I had spent the past five minutes talking about the need for her to start new medications for her heart failure. She had nodded along for most of the conversation, but I wondered if she had heard, or more importantly understood, anything I had been saying. She had had three admissions for worsening heart failure in the past few months. And yet she looked at me and said, ‘Do I have heart problems? No one ever told me!’”.
Dr. Karan, who is an internal medicine resident at the Brigham and Women’s Hospital/ Harvard Medical School, and author of the book “Protecting the Health of the Poor: Social Movements in the South“, 2 felt understandably discouraged and disappointed by her puzzling response to his important explanations. Was her apparent confusion because no other doctor had explained the diagnosis to her? Or that the explanations had been too complicated or jargon-heavy for her to comprehend? Or was this a symptom of her low health literacy? (Health literacy is simply the capacity we have to obtain, process and understand basic health information and services needed to make good health decisions for ourselves).3 Dr. Karan also asked himself, “Have we as a medical system collectively failed to communicate effectively?” but he eventually began to wonder if perhaps none of these issues was the sole culprit all by itself.
Maybe this wasn’t just about a doctor’s ability to communicate the facts of a medical condition. When he discussed this troubling case with his colleagues, some mentioned to him that “communication is only one part of the equation”. One experienced doctor suggested the possibility that Dr. Karan’s patient was in denial.
“What if I had missed an important consideration – that Mrs. S just wasn’t quite ready to accept her diagnosis? Denial is a complex coping mechanism – a universal emotion that almost anyone reading this has dealt with – and which may play a much larger part in people’s ability to understand their own illness than we appreciate.”
Was she aware, he wondered, that she was possibly nearing the last year or two of her life (repeat heart failure admissions do, in fact, predict mortality4 )? “I then wondered – maybe it was not a failure to explain on the part of her medical teams, but her own difficulty with acceptance that she was quite sick.”
And even if she were not in denial, was his patient perhaps just too overwhelmed by this distressing news to properly process what it meant?
“I fear that we don’t always take the time, or are even adequately trained, to figure out what patients do and don’t understand, what they do and do not accept, and what they are and are not able to cope with in that moment. In one study5, nearly 40% of hospitalized patients had no understanding regarding their plan of care for the day – and only 32% remembered the name of even one of their doctors (60%, however, could name their nurses).”
My own response to Dr. Karan’s observations was mixed. Everything he wrote made sense to me. And for 10 years, I’ve been grappling with this same question of why doctor-patient communication seems so fraught with potential misunderstanding, including my essays on the dangers of heart patients in denial, and women’s treatment-seeking-delay behaviors during heart attack. But something also seemed to be missing, and in my subsequent reader response to the BMJ, I described the missing bit as “the inherent hierarchy in medicine that supports this communication gap”.
Here’s what I wrote:
“While growing up in my family during the 1950s, I observed how deferential my parents, especially my mother, always were towards our longtime family physician, and of course towards any specialist that physician may have ever referred them to over the years.
“My mother, who was whip-smart but had little formal education, believed that whatever doctors were telling her was right, that any recommendation was the best one, that doctors wouldn’t be prescribing anything unless she really needed it. And that was good enough for her
“She was also highly aware of a doctor’s very valuable time, and thus reluctant to waste it by asking him to repeat what he’d just said, or to clarify complicated instructions, and most important, extremely reluctant to appear stupid in front of him if she had to admit she hadn’t understood what he was talking about.
“I’m pretty sure she had smiled and nodded throughout each medical visit no matter what the doctor said, and very likely even answered “No, Doctor!” when asked if she had any further questions or concerns. For decades, her family physician likely felt confident after each visit with Mom that all had gone well, and that he had appropriately explained what each test result, medical decision or upcoming procedure was all about.”
I also shared a story I’ve told many times because it knocked me over when it happened during one of my Heart-Smart Women presentations:
“I was reminded of my own mother recently when an elegantly-dressed older woman in one of my audiences raised a beautifully manicured hand during the Q&A and asked me: ‘Carolyn, my doctor says I have a ‘heart rhythm’ problem. What does that mean?’ “I wondered at the time how this articulate, intelligent woman had managed to leave her doctor’s office without knowing anything about her diagnosis. The likely reason: she was very much like my own mother….”
But this apparent inability to understand the doctor is not unique to elderly women. When a cardiologist was called into the Emergency Department during my previously misdiagnosed heart attack and said to me the words “You have significant heart disease,” I could see his lips moving and I could hear sounds coming out of his mouth. But I honestly could not comprehend one word he said after that fateful pronouncement. I may have been nodding as if I understood. And I think I may have signed something, too…
As Dr. Karan’s conclusion suggests, neither he nor any physician can ever be completely reassured that even a smiling, nodding patient understands anything that’s being said. He blames what he calls the “undiagnosed disconnect between what doctors think their patients understand and what they actually understand”, and he further urges that integrating medical communication as a formal practice of study into medical school curricula would be an important start:
“Mrs. S said to me that no one had ever told her she had heart issues, and I tried my best to explain further. Yet I couldn’t be entirely sure that she understood, accepted, or even truly wanted me to be explaining this to her in that moment in time. She looked at me, smiled, nodded, and offered a polite, ‘Thank you.’ But in a few weeks or months’ time, will she ask her next doctor the same question, and might they also wonder, as I did, where her previous doctors went wrong?
“As much as we must ask how much our patients understand about their illness, we must also ask ourselves how much we understand about our patients. Patients do not always remember what we say, but they will always remember the way we made them feel. “We need to do better at knowing what to say, how to say it, and when to say it if we want communication to truly work.”
This story is printed with permission from the blog Heart Sisters, created and run by Carolyn Thomas (for more information, please visit https://myheartsisters.org/). Carolyn is a patient and an advocate for women with heart disease, and in addition to her successful blog, she also recently authored the book “A Woman’s Guide to Living with Heart Disease” ( Johns Hopkins University Press, 2017).