It’s Time to Update the Lexicon of Cancer
When I was a third-year student at Tufts University School of Medicine, I had a psychiatry attending who was adamant that we not write the phrase “the patient complains of” in the chart. This was in contrast to everything I had been taught.
The traditional method of obtaining a medical history always begins with the patient’s “chief complaint” — the sign or symptom that has led the patient to seek medical care. My attending’s point was that “complaint” is a negative term, often used to express dissatisfaction or annoyance. I followed his recommendations: I would try to remember to write “the patient reports” or “the patient endorses” as a way to accurately represent the patient’s symptoms without assigning any feeling or emotion to them.
Flash forward 15 years and I am now a practicing medical oncologist. I no longer spend the majority of my time writing daily progress notes in the hospital. The electronic medical record now allows us to collect and document the majority of a patient’s history through multiple clicks that populate the patient’s chart. But our language can still be careless at times.
In oncology, we will often attribute the cancer diagnosis to the patient. We will call our colleagues for advice on an “ovarian cancer patient” or refer to a person who has a type of breast cancer known as estrogen receptor positive as the “ER-positive patient.” Yet the patient is not their cancer. They have not taken on the characteristics of their cancer. When we use these words, we diminish a person’s identity. Cancer does not define an individual — it is something that happens to a person. My preferred language is to replace “cancer patient” with “a patient/person with cancer,” which separates the person from their diagnosis.
The absence of person-centered language can also create feelings of blame and shame. A search of biomedical literature reveals numerous clinical trial publications that refer to “patients who failed.” This phrase is also regularly used in cancer centers to describe scenarios in which a drug or treatment is no longer working and a cancer is spreading in the body.
Cancer treatment is not a multiple-choice test. You cannot pass or fail. You cannot score an A plus or a B minus. If the treatment is not effective in treating the cancer, it is not the patient who failed. The treatment failed the patient.
We further such negative connotations when we document in the chart that “the patient refused” a particular treatment recommendation. As a breast and gynecologic medical oncologist, I spend my days having very nuanced conversations with my patients about treatment options and decisions. For example, it can be challenging to decide whether to take a drug that reduces the risk of breast cancer recurrence by 5 percent and increases the risk of hot flashes, bone fractures, depression, and joint pain. This can get even more complicated for drugs that have other side effects such as the risk of a secondary cancer or heart disease. When a patient makes a decision, I trust that they have made an informed choice that is right for them. We must acknowledge and respect these decisions, even when we may not agree with them. If we are to foster trust, we cannot lead with judgment and should avoid comments that refer to a patient’s “refusal.”
In recent years, the language of war that is often used in reference to cancer — “losing the fight,” “battling disease” — has come in for criticism. The implication is that a patient who dies didn’t try hard enough to live. Yet for some who are newly diagnosed with cancer or who are undergoing cancer treatment, talking about “fighting cancer” can be empowering. Clinicians would do well to ask their patients what kind of language they’d prefer to use.
In a setting where the stakes are no less than life or death, the weight of language is more important than we realize. We must embrace a patient-centered lexicon in order to pave the way for open, honest, and vulnerable conversations with them. If we don’t, we risk losing the compassion and the humanism that should be at the heart of practicing medicine.
Dr. Eleonora Teplinsky is the Head of Breast Medical Oncology at Valley Health System in Paramus, N.J., and a Clinical Assistant Professor of Medicine at the Icahn School of Medicine at Mount Sinai. Follow her on Twitter and Instagram @drteplinsky.