Replacing words that shame and blame in nursing care

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.

Nursing History and a Book

I was given a first-edition copy of Florence Nightingale’s book, Notes on Nursing, about a year-and-a-half ago. The book was in a glass case and slightly tattered from the looks of it. I was told I could do whatever I wanted with it – keep it, sell it, whatever.

I love old things. In fact, I have a copy of Elliott P. Joslin’s “Diabetic (sic) Manual for Doctor and Patient” that belonged to my great-great aunt and an old First Aid Handbook. But this one seemed different. I immediately felt it belonged in a place where nurses could enjoy it. I felt compelled to give it to my alma mater, University of Connecticut School of Nursing, because I know they have a collection of nursing artifacts and it would be well taken care of and displayed for nurses of generations to come.

This past Christmas I had the opportunity to hand off the cherished book to Thomas Long from the UCONN School of Nursing. He was actually excited that it wasn’t in perfect condition because that indicated that many hands had touched it and turned (and hopefully read) the pages. He asked how I came to own the book and where it had come from. Unfortunately I didn’t even know the story, so I couldn’t share it with him. I only knew that my friend’s mother had owned it.

Soon after I asked the friend who had given me the book and she told me the whole story:

My friend’s father’s sister was a Navy nurse during the 1940s. Soon after she was appointed the guardian of a boy who lost his parents. Later (I believe it was 1959) he purchased the Nightingale book for her (there is a letter with the book that shows the date and price of the purchase). This aunt lived with my friend’s parents the last several years of her life and when she died this book was found among her belongings. My friend’s mother kept it for the rest of her life.

If you are ever in Storrs, Connecticut, be sure to visit the School of Nursing at the University of Connecticut. There you will see the first-edition Notes on Nursing displayed as part of the Josephine Dolan Collection in the Widmer Wing of the Nursing Building. I look forward to seeing it there myself one day.

Humor in Health Care

There has been plenty of discussion about Kelley Johnson’s monologue and comments from The View. I just took a look at the response from the President of the American Nurses Association, who said, “Nurses don’t wear costumes; they save lives.” and its true, you won’t ever see a nurse wearing joker teeth welcoming a patient.

I am grateful to all the people who have stood up for nurses by responding, supporting, and making us feel like the honorable, trusted, and caring profession that we are. I am also thankful to Pamela Cipriano for her quote above, because that has encouraged me to take a lighter approach in this blog article. Everything doesn’t always have to be heavy or philosophical or serious, right?

While I understand what Pamela meant by “Nurses don’t wear costumes,” I will share that I did wear a costume once, when I was a staff nurse on an adolescent unit. It was Halloween and most of the nurses dressed in costumes that day. I was taking care of a particular 14-year-old boy who needed a new IV placed. In all my costumed glory, I went in and put an IV in this adolescent’s arm. His dad sat by the bedside as I did so. And his dad was a VP of the hospital. I never knew if that patient’s father was amused by my costume or annoyed thinking I wasn’t taking my job seriously. He didn’t say anything to me about it.

I sometimes think back to that experience, especially around Halloween, and wonder when it’s ok to infuse humor into health care. I sometimes use humor with patients I see for diabetes education, but then again those visits are not life or death situations. Hospital staff where I work still dress up every year, but I have never worn a costume to work again.

Personally, I like and appreciate humor. But when I’m the patient I do expect health care professionals to use it appropriately. I remember when I was a patient in room # e111, a joke that I didn’t “get” was sort of an issue I didn’t want on my mind. I’ve noticed in the Diabetes Online Community that people often discuss with frustration the jokes that are told about diabetes. Sometimes funny things happen to nurses at work, and those times (and memories) can help us get through tough jobs. In fact, humor can be one way nurses take care of themselves. Are there ways we can use humor to help people heal?

How do you use humor in health care? Or what funny thing that has happened while you were working in a health care setting? What did you learn from the experience?

Do nurses have to justify themselves…to each other?

I worked with a DNP student as her “clinical mentor” for the last year and a half. During one of our meetings she told me that she has had to justify her decisions at every point in her nursing career. When she first became a nurse she chose a BSN program. Then in her first job she was working with all ADN nurses who treated her differently because of her 4-year degree. When a position opened up in the Emergency Department, this nurse got the job because she had a BSN and she dealt with even more fall-out.

When my colleague decided to pursue a master’s degree, she was given a hard time for choosing  to become a CNS (Clinical Nurse Specialist) rather than an NP (Nurse Practitioner). Her most recent experience with having to justify her nursing career and education path was when she began an online DNP program. Why DNP and not PhD? Why online and not on campus?

My colleague’s story reminded me of discussions I’ve had in the past about how nurses treat each other and the age old “nurses eat their young.” I imagine this type of behavior happens in many professions; my biggest concern, though, is that what is known as the most trusted, the “caring” profession, would participate in it.

What is it about nurses or nursing that contributes to this phenomenon? Is it the stress we deal with in our daily jobs – leaving no energy for interpersonal relationships? Do our work settings or the people we work for cause us to feel inadequate leading to insecurities and jealousy? Does questioning ourselves lead to questioning others?

I have witnessed nurses who are incredibly loyal to each other and would do anything for one another. I have close, lifelong friendships with nurses I worked with years ago. I’ve also seen nurses treat each other unkindly and not support each other.

I believe that leadership makes a huge difference. In my experience, nurses who are valued, respected, and given autonomy treat each other better than those who feel micro-managed or not trusted. Management can make or break a nurse’s experience and maybe even how she or he treats their co-workers. That, of course, can trickle down to patient care, which is the whole point of what we do!

Leadership also happens in the classroom. Those who teach and shape nurses can encourage them to support each other and by doing so strengthen the profession. Leaders of our local, state, and national organizations can do the same. And those nurses who are on the front line, feeling the effects (good or bad) of professional relationships, can contribute to making nursing a consistently friendly profession by taking a leadership role in their workplace, or their professional organization. At the very least they can be friendly and helpful to their nurse colleagues.

I am proud to be a nurse, and I’m a passionate advocate for and supporter of the nursing profession. So when I hear stories like the one my friend told me, I get concerned. There are enough stresses and challenges in health care today. By standing together, nurses can make a difference to patients and to each other. I envision nurses as a group of health care professionals who have each others’ backs. I see nurses as being excited for another nurse who is advancing his or her career or education – an opportunity for growth as an individual, a team, a unit, and most important for improving patient care.

Language and Nursing Care

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.