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When talking to, or about patients, words matter. Words can hurt and make patients feel blame or guilt about having cancer. It’s not usually done on purpose, so with increased awareness of what words mean to patients, everyone can be a bit more conscientious about what they say and how they say it. This is a current and important topic talked about in a recent Medscape interview (Dizon and Prowell, 2019) and blog posted on Patient Empowerment Network (Ennis-O’Connor, 2019). This problem is being addresses head on by the American Society of Clinical Oncology (ASCO) who has made a commitment by providing a guidance to faculty of the 2020 ASCO Annual Meeting about the language of respect (ASCO, 2019). This guidance has a section on ‘respect of the patient’. They address three areas; do not blame patients, respect the role of the patient, and do not dehumanize patients. This document is important and will open up a respectful dialog among patients, providers and the public. Everyone needs to be aware of how their words can affect how patients feel.
Blaming patients is so common, it happens every day. If a patient says they have lung cancer, the first thing everyone asks is “Did you smoke?”. It is so bad that many patients say, “I have lung cancer and I never smoked”. Patients are compelled to apologize because of this perception of blame which perpetuates the stigma of a lung cancer diagnosis. The same blame is felt when people suggest a change in diet or more exercise implying the patient did not eat right or exercise enough and that is why they got cancer. Listen closely, you will hear it. Before you speak, think about what the patient may feel. Getting cancer was not their fault, so we need to stop blaming patients for their cancer diagnosis.
Unfortunately, a lack of respect for patients also happens in the health care system. Some common language and phrases convey blame on patients. For example, many times while sitting through a professional presentation, the speaker will say “20 patients failed the treatment”. Patients do not fail treatment, treatments fail patients. Putting the blame on the patient for the failure of a treatment is just wrong. This is also used when talking about response, progression and screening. There are ways to talk about these concepts without blaming patients (see table below).
Patients are even blamed in death. One common metaphor used in cancer is that patients ‘fight’ cancer and are in a ‘battle’ with cancer. When this metaphor is used it assumes there is a winning side and a losing side. It assumes patients can actually win if they fight hard enough and if they die, they have lost the battle. Unfortunately, cancer is not fair and when patients die, they are not losers. Cancer kills patients. Patients should not be blamed for dying, for not fighting hard enough. This is one metaphor that is so common in how we talk about cancer we do it without thinking about how it sounds to a patient who is dying from cancer or living with terminal cancer. This is also one of the most hurtful to patients. I think Stuart Scott said it best in his acceptance speech for the Jimmy V Foundation award in 2014, “When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.” (V Foundation, 2019) There is a fight against cancer and that is being done in the laboratory developing new drugs to kill cancer, that is where the fight lies, not with the patient who is living through their cancer the best they can.
Address patients as people and not as their disease, they are more than their disease. They are not defined by their disease. So instead of saying a “triple negative breast cancer patient”, say a “patient who has triple negative breast cancer”. They are not solely their disease; they are so much more. This is becoming more important as we define specific tumor mutations. Don’t say “the PI3K mutation patient”, the patient has a tumor that has a PI3K mutation, the patient is not the mutation.
It is important to be clear when talking to and about patients. Patients should be respected and never blamed for getting cancer or dying from cancer. It seems so simple, but it will take an effort to change. ASCO is leading the way pointing out how commonly used language needs to change, and they will challenge those making presentations at their 2020 ASCO Annual meeting to be the first to change their language. I know It is not going to change overnight but I do see a wave of change coming.
|Don’t say this||Say this|
|20 patients failed the treatment.||The treatment did not work in 20 patients|
|20 patients did not respond to treatment.||20 patients had tumors that did not respond to the treatment.|
|The patient progressed.||The patient’s tumor grew.|
|20 patients were screen failures.||20 patients were not eligible for the study.|
|The patient lost their battle with cancer.||The patient died from their cancer.|
|PI3K mutation patient.||Patient with cancer that has a PI3K mutation.|
Respectful language. Examples of what should be said to be more respectful to patients.
Edited by Adil Muneer
Dizon, D.S. and T. M. Prowell, 2019, An Emotional Slap in the Face’: The Language of Cancer, Medscape Commentary, June 2019. https://www.medscape.com/viewarticle/914359
Ennis-O’Connor, M., 2019, Words Matter: Why Cancer Isn’t a Game of Winners or Losers Patient Empowerment Network, 2019. https://powerfulpatients.org/2019/04/24/words-matter-why-cancer-isnt-a-game-of-winners-or-losers/
American Society of Clinical Oncology (ASCO), 2019, 2020 ASCO Annual Meeting, Faculty Instructions. https://s3.amazonaws.com/files.oncologymeetings.org/prod/s3fs-public/2019-12/The_Language_Of_Respect-Final-12-09-2019.pdf?null
The V Foundation for Cancer Research, 2019, Stuart Scott Memorial Cancer Research Fund, 2014 ESPY Awards, https://www.v.org/research/stuart-scott-memorial-cancer-research-fund/