In 1993, I gave an inservice for nurses on a School-Age Pediatrics Unit. The purpose of my talk was to discuss the importance of putting patients first by avoiding calling them by their diagnoses. We discussed how “diabetic” and “asthmatic” and “leukemic” and “sickler” are labels, and that there is so much more to each child than a disease or medical condition. I was saddened last year when I came across my notes from this talk and realized that things haven’t changed enough. We have not eliminated the words in health care that can hurt people, and maybe even lead to negative health outcomes.
I am a nurse and certified diabetes educator. I have been working with people who have diabetes for 20 years. I’ve lived with diabetes myself for almost 40 years, which is certainly one of the reasons I take language seriously – I know how it makes me feel. I remember my pediatric nursing courses, where we learned to avoid words that were potentially frightening to children, such as “stretcher” and “shot.” Instead we were taught to use “gurney” and “injection.” I also remember a friend who was infuriated when the family physician called his baby “failure to thrive.” “No one is going to call my son a failure,” he fumed, not understanding what the term meant.
In diabetes care there are many words that imply judgment, shame and blame. Words such as “compliance,” “control,” “test,” “good,” and “bad.” And the list goes on – I have heard people with diabetes referred to as “recalcitrant,” “non-compliant,” and even “neurotic.” Nurses discuss patients through both speaking and writing. They sometimes use these words directly with patients, and often with each other. I believe that people with diabetes can sense when a health care professional deems them “non-compliant” or “poorly controlled,” even if they refrain from saying those words to their faces.
Where do those words come from? Why would people who choose a helping, serving career such as nursing, use words that could hurt people? It started with the acute care model, on which our health care system was founded. People came to health care professionals for help and were told what to do to “get better.” Taking medication for an infection, or changing a bandage, is very different from managing the daily tasks of a chronic disease. Since health care professionals don’t go home with their patients and help them manage their disease day in and day out, it truly is self-care or self-management. And it’s hard to deny that our health belongs to us. Therefore, words like “compliance” and “adherence” don’t belong in chronic care. Those words mean doing what someone else wants. People with diabetes make choices every day, and those choices determine how they take care of themselves, how they feel, and their health outcomes.
Another judgmental word is “control.” “Glycemic control” is so ingrained in our diabetes terminology that very likely most people don’t realize how often they say it and read it. But how much control does the person with diabetes actually have? Despite modern advances in technology and medications, it is not physically possible to keep blood glucose levels in the normal range all the time for those with diabetes. With much effort it is possible to manage diabetes, but perfection cannot be achieved. Using words like “control” makes it appear that control is possible and those with diabetes are not doing a good enough job.
Diabetes is a demanding disease with an emotional toll. Many, if not most people with diabetes experience some level of diabetes distress due to the stresses of diabetes. These stresses include the daily tasks of poking fingers, taking medications, scheduling and attending health care visits, and thinking about every morsel of food they eat. Add to that the constant questions and concerns from family and friends and society in general. Having to endure judgmental words from health care professionals on top of all that could really be the last straw. What if our words lead to further burnout or discouragement? Better yet, what if changing our words could empower people with diabetes to take better care of themselves?
Nursing is known as the caring profession because we truly care about people and their health. It’s time to match our words with what we do and what we stand for. Becoming aware of the words we use is the first step. Let’s really pay attention to the words we speak, read and hear in practice and in everyday life, and think about how they could be affecting people’s health. Stay tuned for a future blog post with ideas for words that empower people. And please feel free to add your own experiences with language in nursing care.