The last time I wrote about language and health, specifically diabetes, I mentioned several words that impart judgment, shame and blame. People with diabetes live with and manage a demanding and challenging disease. When we use words like non-compliant or poorly controlled we are not taking into consideration all the factors that could be at play. Can the person afford insulin? Are they experiencing food insecurity? Did they ever receive diabetes education? What is their level of health literacy?
Two weeks ago I gave a talk about the messages we send to children and adolescents at diabetes camp. I discussed how we can send messages of judgment, or messages of strength and hope, simply based on the words we choose. Empowering campers is the work of diabetes camp professionals and volunteers. For nurses outside of the camp setting, the focus is also on empowering people – in hospitals, clinics, home care, public health, academics, etc.
At the end of my presentation, there was some discussion. The people in the room who live with diabetes strongly agreed with my suggestions about language and messaging. However, two people (who happen to be health care professionals) raised the point that “there are times when it’s necessary to use words like uncontrolled, good and bad.” They argued that doing otherwise is not giving good care. One of them also shared that she thought my talk was judgmental. At the break another participant came up to me and said she agrees that these words are not “PC.”
My first response to these comments was concern. I am clearly not using effective messaging about messaging if this is how people respond! Then after thinking about this feedback for several days I realized that it was very important for me to hear these points. This is how I can do a better job explaining what I’m trying to say. If I come across as judging people for using certain words, that absolutely defeats my purpose. If I come across as not giving good care by avoiding certain words, that’s not my intent either. And if we are simply thinking of the words we use in health care as “PC” or “not PC,” then we are not looking at the underlying problem. And isn’t that what we learned back in nursing school? (Look at the underlying problem, don’t just treat the symptoms.)
So my approach to all this is to go back to the problem, which is using language that is not appropriate for chronic care. Patients in 2016 are demanding holistic, person-centered care – and language is part of that care. Words create a context for people, and through that context people create meaning. So if they hear words that make them feel judged, they are likely to translate that into “I’m a bad person.” If they hear poorly controlled they may feel they are a failure.
Some ways we can change the messages we send to people include using words that put the person first: woman who has diabetes, people living with diabetes, or child with diabetes, instead of diabetic. We can use words that build on people’s strengths, rather than their weaknesses: takes her medication about half the time, rather than she’s non-compliant. And we can use words that focus on physiology, rather than judgment: blood glucose levels in the target range, elevated A1C, glycemic variability, glycemic stability, or blood glucose management, instead of any version of control.
When a patient has blood glucose levels that are clearly not in a safe or healthy range, we can start by asking questions. How do they feel about it? Find out what they know or don’t know. What are their resources? Ask if it’s ok to make some suggestions or share some guidance. Acknowledge that it’s hard and scary. This is how we can give good care and empower people. It doesn’t require judgment or judgmental words to help people make changes.
By focusing on sending messages that are person-centered and strengths-based, words that are consistent with those approaches will naturally follow. We can’t change the history of health care, or the words that went with it. But we can change the messages we send going forward.