'An Emotional Slap in the Face': The Language of Cancer

Don S. Dizon, MD; Tatiana M. Prowell, MD


June 17, 2019

This transcript has been edited for clarity.

Don S. Dizon: Hi. I'm Don Dizon, professor of medicine at Brown University and director of women's cancers at Lifespan Cancer Institute in Providence, Rhode Island. With me is Tatiana Prowell, associate professor in the breast cancer program at Johns Hopkins Kimmel Cancer Center in Baltimore, Maryland. She is also the breast cancer scientific liaison at the US Food and Drug Administration. Welcome to Medscape Oncology Insights.

The topic we're going to talk about today is something that Tatiana and I have discussed on various social media platforms. It relates to communication, particularly in an age when medical communication is not siloed. What we hear as professionals is what our audience hears, what our patients hear, and what our caregivers hear. Tatiana, what are your thoughts about how oncologists talk today?

A lot of the language that's baked into medicine reflects a time when medicine was more paternalistic, when patients were not equals or partners.

Tatiana M. Prowell, MD: It's interesting. We were all chosen to go to medical school based on grades, scores, and at least in part on our ability to relate to other people. This ability may be assessed through a personal statement or interviews. Medical schools care about the fact that we can communicate, but then they beat our ability to communicate out of us over the course of our medical training. I'm always struck by how, when I go back and talk to elderly family members, for example, I'll be trying to understand what happened with their medical situation in the hospital and they'll tell me that they had blood poisoning. I think, blood poisoning? And then I'll realize, right—that's bacteremia. That's what I used to call it. Or they'll say, "I had double pneumonia," and that's what we used to call bilateral lung infiltrates. So we teach people in medical school to forget how to communicate like normal people. That's the first issue.

The second issue is that a lot of the language that's baked into medicine reflects a time when medicine was more paternalistic, when patients were not equals or partners. That time is still reflected in our language, and I worry that it has the ability not only to make patients feel disrespected, but also to influence our own thought patterns.

Dizon: To pick up on that—I don't want to call it dehumanization, but the language of oncology that was instilled in us early in our fellowships is a language that we tend to adopt as a second skin. So we talk to each other about "that cancer patient"; for example, "How is that ovarian cancer patient doing?" We are full of empathy but we're really looking at people based on their disease. There was a time when that was okay, because you only got information through your doctor, and your medical record wasn't something patients could access. But I believe that our colleagues don't necessarily appreciate that shift. What is your impression in clinical practice?

Prowell: Even now, our fellows and our residents, who have grown up during a time when patients are much more partners with us than they were when I trained a quarter of a century ago, even now they are still learning the language that we were raised on, right? So we're saying, "the patient progressed" when in fact the tumor got worse. We're saying "the patient was a screen failure" or "failed their treatment" when, if anything, our process failed or our medication failed. When we have a clinical trial that wasn't designed for the sorts of patients we see and therefore the patient is not eligible for the clinical trial, we call them a "screen failure." I think it makes us feel better about ourselves. Or we say the patient failed treatment, and in some sense it kind of removes the responsibility from us as physicians or scientists, that we still don't have adequate therapy for a lot of our patients. I believe that this language is actually a defense mechanism.

Dizon: On the one hand, it's a defense mechanism, but I think you're being generous. I believe the other reason that language works in our field is because I understand inherently what you meant when you said that the patient failed treatment. I understand and I'm assuming what you mean. My concern is about how I've walked into a patient's room and said, "You're failing this treatment and we need to move on." And I got the equivalent of an emotional slap in the face because patients don't want to feel like they failed anything. I've learned through social media that people actually do hear that, even beyond their own personal experiences. Have you had any exposures into that world that sort of struck you on social media?

Prowell: It has happened both on social media and in the clinic, even with language that I wouldn't say is overtly disrespectful or anything, but just all the ways that we can confuse patients. For example, I've said a scan was negative and had a patient break into tears because she understood that to mean the results were bad. That's what negative means. Whereas I meant the scan is all clear, looks great. So there are ways we can be misunderstood, and some of those ways are offensive and some involve simply failing to communicate well, failing to convey the right information. It's all failing to give the right information in one sense or another.

I've really appreciated so many patient advocates from the breast cancer social media world on Twitter calling these things out. I'm sorry I don't know which patient advocate this was, but someone said, "I don't like how people keep referring to this as 'the disease'; it makes me feel like I'm infested." It was such an interesting word, and as I thought more about it and we talked about this a little on Twitter, it felt antiquated, as if it was from a time when cancer was unspeakable because the prognosis was so poor. We're not even going to call it cancer; we're going to call it "the disease," and we're going to say "the disease progressed," right? And this is built into our language. We include it in the formal tools we use to assess response to our imaging, right? When you have language that is so deeply ingrained in the culture of medicine and science, changing it is a lot of work. It's like changing your name.

Dizon: When I've written about this topic, there are people who kind of roll their eyes and say, "It's as if you're trying to introduce political correctness into the oncology world and that makes me uncomfortable." What do you say to folks who may have that opinion?

Prowell: First, frankly, our opinions about this don't matter. The patient's opinions matter. So if we believe that we are making some exceptional allowance to not hurt patients' feelings, well, we should. If we feel as though we're going above and beyond so that we're not misunderstood, we should. So to anyone who objects to it on those grounds, I would say that I don't really care, because what matters is what the patients are hearing and what the patients feel when we say these things.

Second, we know that linguists have looked at this, for example, in languages that have gender associated with their nouns—that the simple fact of language actually influences your thought. For example, take words like "death," which have different genders in different languages. The word for death in German is masculine, but death in Russian is feminine. And if you look at paintings by German and Russian artists who have personified death, German painters almost always paint death as a man, and Russian painters almost always paint death as a woman. There is no obvious reason for why that would be. There is no reason to believe that this is some sort of bias. This has nothing to do with political correctness. This is just a simple fact of how the language we are taught from birth—and in the case of medicine, the language we were taught from our rebirth as medical students—actively influences our thought.

The language of failure needs to go.

Dizon: That is fascinating. There is no place for blame, obviously, but the language we use can sometimes place blame. The more difficult point, and this is where I sort of hit a wall, is that changing the way we talk is almost as if you're fighting with windmills. It's one thing to say in fellowship, "I want us all to really think about how we're phrasing things, so that this generation of up-and-coming oncologists won't talk about things the way I was taught to talk about things." But it's quite another thing to go through an annual meeting, whether the American Association for Cancer Research or the American Society of Clinical Oncology (ASCO) or any other organization, and see poster after poster, presentation after presentation, where the traditional PowerPoint slides come up: "Seventy patients were looked at, 30 failed screening," and then you go on to the next. Survival: "We haven't reached median survival yet."

You're an up-and-coming academic. What is our responsibility in terms of forcing or encouraging–I don't know which verb makes more sense—the shift in language?

Prowell: I believe it's neither forcing nor encouraging as much as it is modeling. Think how much of medicine is still an apprenticeship. We do what we see those who are senior to us do, whether that's medical students looking at the interns or interns looking at the senior residents or residents looking at the fellows and so on. That part of it starts with modeling the kind of world we'd like to see. That is probably the most important thing. Also, we have to realize that this is a long process and it's natural with all change for people to resist it because it's unfamiliar. Doing anything differently from the way you're used to doing it naturally involves actual effort, and people are wired to resist things that involve actual effort. It's hard to get people to exercise, right? So it's interesting.

I remember sitting in high school in the late '80s and hearing a teacher say "fireman," and one of my classmates, a girl, said, "Say 'firefighter.'" The teacher said, "I have a better idea. Why don't we just say 'fire extinguisher'?" And I thought to myself, "Wow, what a takedown." But now when you say "firefighter," no one blinks at that. It's a long process. It may take decades, it may be that for the children of the people in medical school now, the right language will end up winning. We just have to model it, and we have to be patient that we're not going to see the end of the work in our career lifetimes.

Dizon: In one sense, I agree with you that it's going to take a long time, but in another it's discouraging that we won't see it. Right now, for our audience, what are the five changes you would make? Instead of saying it that way, think about saying it this way. Can you think of five ways you would rephrase things?

Prowell: Yes. The language of failure needs to go. We need to stop saying "screen failure" and "treatment failure." If there's failure, if we want to retain that word, then we need to flip the order so that the treatment failed the patient. The eligibility criteria failed the patient. So that's part of it. The failure language needs to go.

Dizon: I totally agree with you.

Prowell: I'd like to see the word "subjects" go, and that's difficult because we have that language deeply ingrained. We have offices of human subjects research. We have that language deeply ingrained in regulatory standards and clinical trials. I'd like to see that go. I was struck by Joe Sparano, during the TAILORx presentation at ASCO, referring to the trial participants as volunteers.

Dizon: So was I.

Prowell: He didn't even say "participants"; he said "volunteers." It took me a second, but I watched the row of people around me as he said it again, people being confused, thinking, Were these people who were assisting with the trial? Actually, it took a few times of his saying it for the audience to realize that he was talking about the people who are in the trial. What a powerful choice of words, and as important as that platform was and as important as that clinical trial was for the practice of breast cancer, that moment was what I remember most from the presentation. That moment was what I heard the most people talk about after that presentation, and not only patient advocates, but my colleagues. I believe it makes the point that if you are in a position of prominence, you have an obligation to be thoughtful about your words. You have an obligation to model how it could be done better. Getting rid of "subjects"—again, it's complex—and replacing that with "volunteers" or "participants," something that acknowledges that these people who join our clinical trials are our partners in drug development.

Dizon: And they did it voluntarily.

Prowell: Absolutely. And as with all volunteers, it was a ton of unpaid work, right? So that's the second change of words. Third would be—and this is not oncology-specific—but maybe some of the language around obstetrics and gynecology [needs changing]. Things such as "estimated date of confinement." I remember being pregnant and seeing that and thinking, "Estimated date of confinement"? What on earth? There is a lot of language relating to pregnancy, and it's hard to imagine that these are not gender issues, but I'd like to see some of that language go. That would be the third one.

The fourth one is not a term as much as it is phrasing, and I'm guilty of it too. I catch myself all the time. We say "patients" instead of "people with (a given condition)." I made the decision to change it on my Twitter bio, which had said "serving cancer patients via clinical care, medical education," and so on. I made the choice to change that to say "serving people with cancer," which, on Twitter, requires a lot more characters than "cancer patients." [Laughter] So it was a real choice, but I thought it was important to put the people first and the disease that they have second.

Dizon: I keep saying it's not an adjective.

Prowell: It's not—absolutely. And I get it; it's shorthand, it's compressed. I understand why we talk like that, but I do worry that when we put the condition before the patient, we're putting the condition before the patient in our minds, and we'll see that borne out in rounds when people will say, "the pancreatic cancer case."

Dizon: Or "the cancer in bed two."

Prowell: Absolutely. It troubles me a lot. So that's number four. What's five? There are so many to choose from and I only have one more, so I'm going to let you choose number five.

Dizon: The ones I'm always struck by, you mentioned earlier, and that's the whole notion around scanning and response criteria: "You didn't meet the criteria for a complete response," or "You didn't meet criteria for this," or "Your disease is stable." There is a language we use in clinical trials, which I don't believe we can change because that's how we understand each other. But the interpretation of it when it's written up deserves some mention as well. I've known people who said, "You were restaged and your restaging shows that you're in complete remission," and it's just confusing.

So when you restage, does that mean you took me from a stage II to stage I, or what does that mean? Or stage IV but you weren't sure so you checked and now I'm a stage II? So it's just this combination of phrases we use every day and I think it's useful, but we have to be able to interpret that. The language of oncology isn't one that people are born into. We took 3 years to learn it.

Prowell: Right.

Dizon: Our patients deserve the same kind of time.

Prowell: I'm going through my own notes in my head, and another piece is the language that disbelieves the patient. There's a lot of that. "The patient denies illicit drug use." I have become very intentional since I've started thinking more about this, to say, "The patient states she has never used illicit drugs." Period. It is a statement of fact. When we say "denies," officially we mean the same thing, except that if you have a patient reading a note, which is common now in OpenNotes, what do they think when they see that? Do they think that I don't believe them? Because the truth is it's very rare that I don't believe a patient who is saying they've never used drugs. But when I write that, and I have written it thousands of times, I worry that it has a real risk of being misunderstood.

Dizon: Yes. That's the reality of medicine today. Patients have access to the records. Patients have access to studies. Patients have access to our presentations. We need to look at this through that lens, that this is no longer a closed society and network knowledge is the rule of the game.

Prowell: How do you do that now that patients access their clinical notes routinely? Do you write your notes in different language to be more understandable to them, and do you find that that takes you a lot more time because it's not the natural phrases you're used to rattling off?

Dizon: Well, I'm going to answer that question with a plug. Every single oncologist should join Twitter, because it teaches you to be succinct and clear in what you're saying. I have faculty who struggle with notes and how long they are because they are trying to explain things. But if you use nontechnical language, short phrases, the intention is there and people can read that. But I do ask myself whether I'm comfortable with my patients reading this note, and it's for that reason—I think I'm like you—I'm a little bit more cautious but also just very clear about what I'm doing. I think our patients deserve that.

Prowell: Absolutely. I agree.

Dizon: Thank you so much for joining me, Tatiana. It was great having you. And thanks very much to our audience for listening to this program. I hope it helps you in your own medical practice.

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