Lost in Translation: Communicating with Newly Diagnosed Cancer Patients
We need to understand how word choices may be interpreted in a way that was never intended.
Regardless of whether cancer is detected early or advanced, most people face the prospect of their own mortality at diagnosis.
For those patients who are newly diagnosed, they may only recall the experiences of friends and/or relatives, or how treatment was portrayed in film and television. In their minds, chemotherapy means hair loss, weight loss, fatigue, and nausea and vomiting. Radiation therapy means burns. Surgery means disfigurement.
It's essential to keep this in mind when communicating our clinical impressions and recommendations, a scenario perhaps best illustrated by the Far Side cartoon featuring a dog named Ginger. In one panel, labeled “What we say,” the dog's owner is scolding her: “Ok Ginger, I've had it! You stay out of the garbage! Understand, Ginger? Stay out of the garbage!” The second panel shows what the dog actually hears: “Blah, blah, GINGER, blah blah GINGER blah blah blah...”
For those hearing the diagnosis of cancer for the first time or facing the diagnosis of recurrence or metastases, it is likely that most of what is heard is not the discussion of the diagnosis, staging, implications, and treatment. During that first visit, it's likely that all the patient hears is “Blah, blah, CANCER, blah blah CANCER.”
There are data that this may actually play out in real life. In one study, 260 patients with newly diagnosed cancer who had met for the first time with an oncologist were profiled.1 All patients were interviewed to determine what they were told about diagnosis, prognosis, and treatment, and their answers were compared to audiotaped recordings of the actual conversations. Irrespective of age, participants recollected less than half of the information that was presented. In addition, those who asked the most questions had the poorest recall.
Beyond these issues, we need to understand how our word choices may be interpreted in a way that was never intended, no matter the clinical scenario. It often arises because the language of oncology (or “oncospeak”) often does not translate accurately to those outside of the field. I wrote about this in an ASCO Connection column a few years ago.2
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Years ago, I made the mistake of telling a patient with recurrent ovarian cancer that she had failed treatment, only to witness the blunt and emotional impact these words had on her.
After reading about my experience with that patient, Katherine O'Brien, a patient advocate, shared a similar story with me. Katherine was initially diagnosed with metastatic breast cancer to her bones, but at one of her visits, her oncologist suggested she undergo “restaging.”
To Katherine, the word restaging suggested that a mistake had been made—perhaps she did not have stage IV breast cancer. To her, “restaging” represented a wonderful escape clause. As she put it: “What I heard was, Blah, blah, HOPE, blah, blah HOPE.”
Cancer As A War
When we speak of cancer as “war”, we set the disease and its treatment in terms of victors and losers. Our patients are soldiers, armed with the gear for battle—chemotherapy and radiation therapy; theirs is a valiant fight, one in which there can be only one victor. All sounds good, and highly motivating. But what about those for whom the “war” never ends and those in whom the war is ultimately “lost”? Are they “casualties” or did they “surrender”?
Cancer is a disease, and one that can be treated. With advances in medical therapy, more and more are living with the disease. It is no more a war than any other condition affecting humans.
Language of Blame
An important part of oncology research is aimed at answering the question, “what causes cancer?” It is not only of academic interest, however. Patients often have a desire to learn how and why they were diagnosed with cancer. The risk factors associated with certain cancers have been established. Perhaps the best example is that of lung cancer and smoking.
However, discussion of risk factors with our patients should be carefully considered, because the last thing our patients need is to walk away from any conversation stigmatized and feeling that their cancer was self-inflicted.
The importance of the issue was illustrated in a qualitative study by Chapple and colleagues that included 45 patients with lung cancer.3 Using patient interviews, they documented that the stigma related to lung cancer was shaped by its association with smoking, the wider public perception that it was therefore self-inflicted, as well its association with being lethal.
RELATED: How to Communicate Metastatic Breast Cancer Pain
In addition, patients reported that the assumption their cancer was “of course” caused by smoking was one shared not only by family and friends, but also was what their own physicians had presumed.
A Way Forward
While this may sound like an exercise in political correctness, the power of words extend far beyond the “appropriateness” of word choice; they go to the heart of patient engagement and shared decision making.
These examples illustrate how our words and how we communicate affects our patients and lend credence to the importance of communication. So how can clinicians ensure that they and their patients are on the proverbial same page? As discussed in an article by Dizon and colleagues, there are multiple steps clinicians can take to help ensure what we say is actually what our patients hear.4 These include:
- Ensure a shared understanding of the past: this can be done by asking patients what they understand of their own illness. In this way, any new discussion can begin from a similar viewpoint of what has already transpired.
- Be aware of emotions: Although data suggest that oncologists are not adept at responding to emotional cues from our own patients, it is essential that we do so.5 How patients respond to what is said can be a cue for oncologists to pause or slow down the conversation and allow the patient the time they need to absorb what is being discussed or is happening. Several studies show that doing so can not only help build trust and rapport between a clinician and patient, but can also improve the recall of what transpired during a patient visit.6
- Be cognizant of word choice: Clinicians should understand the many of the terms we use as a part of routine communication among oncology professionals can have a different and unintended meaning for our patients.
For both clinicians and our patients, aiming for better communication may improve the goals for shared decision-making, which can span the entire continuum of the cancer journey. We must frame our discussions in proper contexts so that our own patients can join us in making plans, whether for treatment or surveillance.
- Jansen J, Butow PN, van Weert JCM, et al. Does age really matter? Recall of information presented to newly referred patients with cancer. J Clin Oncol. 2008; 26(33):5450-5457.
- Don S. Dizon. The Power of Words. ASCO Connection. http://connection.asco.org/Commentary/Article/ID/3219/The-Power-of-Words.aspx. Published May 19, 2012. Accessed August 28, 2012.
- Chapple A, Ziebland S, McPherson A. Stigma, shame, and blame experienced by patients with lung cancer: qualitative study. BMJ. 2004;328(7454):1470.
- Dizon, DS, Politi MC, Back AL. The power of words: discussing decision making and prognosis. Am Soc Clin Oncol Educ Book. 2013:33;442-446.
- Pollak KI, Arnold RM, Jeffreys AS, et al. Oncologist communication about emotion during visits with patients with advanced cancer. J Clin Oncol. 2007;25(36):5748-5752.
- Jansen J, van Weert JC, De Groot J, et al. Emotional and informational patient cues: the impact of nurses' responses on recall. Patient Educ Couns. 2010;79(2):218-224.