Words Matter: The importance of patient-sensitive language
By Faith Hayden, ePublishing Specialist
“Sticks and stones will break my bones, but words will never harm me.”
Despite what childhood nursery rhymes proclaim, words matter. Language can be used to encourage or condemn, to enliven or dishearten. And in the medical field, words can be a healing tool in a physician’s armamentarium or the roadblock undermining the doctor-patient relationship. It can be the difference in a patient making well-informed decisions about their care or a patient bewildered by the treatment options. This is why patient-sensitive language—appropriate communication that physicians should use when delivering information to patients and their family—is a critical issue in oncology today.
Defining patient-sensitive language
Patient-sensitive language “is both cognizant of the medical situation regardless of its severity, yet hopeful and nontechnical,” said Don S. Dizon, MD, FACP, Assistant in Medicine with Massachusetts General Hospital, Gillette Center for Women's Cancer.
There are two types of patient-sensitive language, said Lidia Schapira, MD, staff oncologist with Massachusetts General Hospital, Gillette Center for Women’s Cancer. One is using words as a therapeutic tool to make patients feel valued and “known” instead of as just another case. The other is focusing on clarity and ensuring the disease and treatment are fully understood. That includes avoiding medical jargon and assessing the patient’s English fluency and literacy and numeracy level.
“You’re not going to start talking about medians to someone who doesn’t know how to add, and you’re not providing complicated references to someone who is barely literate or has a fifth-grade reading level,” said Dr. Schapira.
Choosing words carefully
Not isolating or blaming patients is a huge sticking point for Diane Blum, Chief Executive Officer for the Lymphoma Research Foundation and Cancer.Net Editor-in-Chief. For example, saying a patient “failed” treatment or a treatment needs to be “salvaged” are phrases that imply weakness on the part of the patient. Ms. Blum also takes issue with the oft-heard phrase “patient denies” because it implies the patient is lying. These particular language issues, said Dr. Dizon, are a result of how doctors are formally trained in medicine.
“If you read a medical student’s notes, it’s that language: ‘Patient denies alcohol use,’ and ‘Patient denies smoking,’” he said.
Dr. Dizon encourages oncologists to be especially mindful when communicating cancer risk factors to patients or speculating on why a patient may have developed cancer.
“We are learning about these risk factors and how you translate them into something actionable without seeming parental,” he said. “It’s a problem. How do we make people feel like they didn’t do this to themselves?”
For example, if a patient asks what caused their breast cancer, an oncologist may not necessarily say, “Because you never had children,” or “Because you don’t exercise,” but the implication may be there, said Dr. Dizon. “We never say that specific language, but we do say, ‘Protective factors include having a child early in life and exercise,’” he explained. “And then you have those people who didn’t have children, and they say, ‘So what you’re saying is I caused my breast cancer.’”
But patient-sensitive language isn’t just about how oncologists speak to their patients; it’s how oncologists speak to each other. For example, Dr. Dizon still hears oncology presentations in which the speaker says “the patient failed therapy.”
“You can sit in an audience as an oncologist or an oncology professional and understand exactly what that means,” he said. “But our talks aren’t siloed. The audience has grown beyond our peers. And one of the ways peers can change how the language is approached is communicate sensitive language when they are doing talks about therapy.”
Explaining therapy clearly
Patient-sensitive language doesn’t end with avoiding negative words and phrases; oncologists must also make sure patients understand their condition. This means avoiding “doctor-ese” and speaking as directly as possible.
“More than 60% of people in this country have less than a college education and may have more difficulty understanding the complexity of decision-making and treatment,” Ms. Blum said.
This is why assessing a patient’s education level is key. Dr. Schapira recommends taking an extensive patient history, asking questions such as, “Did you go to college,” and “What did you study?”
“The way someone responds can perhaps tell you a lot about them, such as how they express themselves and what’s important to them,” Dr. Schapira said. “It is part of what we call a social history. You learn something from that.”
Taking the time to gather this kind of patient information can be difficult for some oncologists, as can avoiding jargon. It takes time to ask a patient how things are going, and doctors are rushed. Furthermore, the patient population for a single oncologist can be extremely varied, and transitioning between one and another is challenging.
“Some of my patients are very well educated, and others can’t read or write. Some wish to discuss all available treatment options in detail and others just want me to tell them what to do as simply and quickly as possible,” Dr. Schapira said. Over the course of a busy day, Dr. Schapira said she needs to adapt quickly to provide the right amount and type of information depending on the individual patient’s needs. “I feel I need to ‘diagnose’ and ‘treat’ their need for information and guidance and do so efficiently and with the same degree of precision expected when we perform a technical procedure.”
Ms. Blum suggests oncologists provide patients with clear-cut written materials and medical illustrations, a number of which are available on Cancer.Net. She also emphasizes direct language, for example, saying, “There are three treatment options available. Let’s go through them one at a time.”
Although being mindful of patient-sensitive language isn’t easy, the good news is many of these communication tools are teachable, and this issue is on the oncology community radar.
“This is a conversation we need to have in medicine,” said Dr. Dizon. “I do believe there are areas that we as oncologists can do a little bit better in providing hope, empathy, and compassion by the way we talk to people and our colleagues.”
The ‘War’ Language Debate
How many times have you heard a colleague refer to the “war on cancer” or read in an obituary that someone “fought a brave battle against cancer?” War terminology and cancer seem to be intertwined in our society, but oncology professionals have mixed opinions on whether or not this language is helpful or harmful.
“I’m not a big fan of all the war terminology in cancer treatment,” said Diane Blum, Chief Executive Officer for the Lymphoma Research Foundation and Cancer.Net Editor-in-Chief. “In the heyday of chemotherapy, there was an idea that you wiped the cancer out, you obliterated the cancer as you would this pestilent on somebody. I don’t know many other illnesses where you read people fought. Do you read that people fought their battle with heart disease? No, you don’t. It’s really a language that’s used for cancer.”
For some patients, though, the war terminology may be helpful, even energizing.
“There’s one group of patients who really feel it is a war, that they are under attack and they need to fight,” said Don S. Dizon, MD, FACP, Assistant in Medicine with Massachusetts General Hospital, Gillette Center for Women's Cancer. “All you need to do is give someone chemotherapy with curative intent for ovarian cancer and these patients go from fear and sadness that they’ve been diagnosed with this, and they start treatment and realize their strength. They realize it’s armor, and they realize it’s weaponry, and they realize they’re fighting. There is a place for that, because I see it.”
There’s another group of patients who don’t see cancer as a war they need to devote their entire life to, they see it as a disease that warrants treatment.
“We talk about people living with cancer, living through cancer, cancer survivorship. All of these things are an antithesis in terms of a concept to this war mentality,” said Dr. Dizon. “If you’re in a war, we have to always fight. We have to constantly guard against recurrence. You’re consumed by this war. Whereas what ASCO is trying to say is there is a life, there is a new normal and we have to embrace it. The war mentality doesn’t fit into that.”
For more commentary on using the “war” metaphor for cancer, please see the Forum post, “No More Magic Bullets,” by ASCO member by Matthew S. Katz, MD.