What’s Said and Left Unsaid

In the video Voices From the Lived World of Illness, Adrienne Barnes tells us, “I thought I could go into the doctor’s office and hear what they said and understand it all and go back and report it to my 9,000 family members…but it’s become a really big joke because I am incapable of going now to see a doctor, remembering what they said and two, paying attention. I am mostly focusing on wanting to hear something good.”


Following Adrienne’s comment, we hear George Lewis say, “I think one thing I’ve heard sometimes you don’t hear. You’re hearing what’s being said but don’t comprehend. I just know in my life whether it’s business or whatever… A day later or days later I’d be thinking about a question I wished I had asked or thought of. For me, even if the doctor told me that minute, I might not remember everything—I might not comprehend.”


Adrienne, a nurse diagnosed with pancreatic cancer, and George, facing lymphoma and kidney cancer, were featured in Voices From the Lived World of Illness, a 2005 video produced by the Center for Communication in Medicine. The video was brought to the attention of The Health Show, a radio program recorded at WAMC (Albany, NY) and distributed nationwide through National Public Radio. The show’s host spoke with me and Dr. Bernard Bandman, the video’s co-producers, and we agreed to appear on the show.  Dr. Lidia Schapira, an oncologist and medical advisor on the project, would join us on the phone from Boston.


After playing what by Adrienne and George had to say about the challenges of communication surrounding medical language, the host looked across the studio desk and asked Dr. Bandman for his reaction. This led to an explanation of studies that showed doctors may assume patients who do not ask questions are uninterested in being involved in healthcare decisions. Dr. Bandman noted, “Patients are often intimidated and don’t want to be perceived as difficult and don’t always share their views or ask questions, especially those from less educated backgrounds.” He added that, as a result, misunderstandings may not be expressed.


Citing my experience as a medical humanist, I said “It’s often a matter of what is said and what is left unsaid.” I gave an example of a patient’s wife having called me because her husband had been admitted to the hospital. She knew the function of my role was to document what patients understood about their health status and plan of care. The patient’s wife said, “I don’t understand. The doctor told us he wouldn’t be having any more treatment. We thought that meant he was cured.”


I related another instance when a patient confided, “Do you know what the doctor said to me? He asked if I was religious man and at that moment I knew, it wasn’t good.”


To which I added, “Doctors have the difficult task of trying to reconcile a patient to illness and in some cases their impending death.”


Dr. Schapira, on the phone from her office at Massachusetts General Hospital, reminded us, “Remember that doctors are also normal human beings coping with the continuous onslaught of bad and sad news… that they are personally and deeply affected by the news before they convey it to patients.”


She went on to say, “Ideally the doctor will elicit the patient’s concerns but in practice this step is often overlooked. Even very sophisticated and educated people often are overwhelmed by emotion when they hear the word cancer or recurrence and unable to understand or retain information.”


What Adrienne and George shared about their experiences and the comments we made led the host to note how communication in the medical encounter can be overwhelming for patients and healthcare professionals alike. To emphasize this point, he played a clip of Pat Barr, a breast cancer patient, who emphatically stated, “Doctors should think about sharing some of the responsibility… being sure there is someone around who can translate the language.”


Those who receive and provide medical care have long recognized that language differences can be a major barrier in the delivery of safe and effective healthcare services. So, what can be done to remedy this? The first step is for patients to recognize their responsibility in asking questions and expressing concerns, beginning at the time of diagnosis. This action will demonstrate interest in being engaged in conversations about their health status and planning of care. But just as much as patients need to identify and communicate issues that matter to them, healthcare providers need to listen and speak in a language that can be understood. To assist with this process, I created SpeakSooner: A Patient’s Guide to Difficult Conversations, a tool to help patients prepare for serious illness discussions in the hope that nothing is left unsaid.