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Dickinson & Guzman Transcript

To watch the interview in full, click here.

Steve: This is Steve Freed with Diabetes in Control and we’re here at the American Diabetes Association 77 Scientific Session 2017. We are here to present you some really exciting interviews with some of the top endos from all across the world. We have two special guests with us today. We have Jane Dickinson, RN, PhD CDE and Susan Guzman, PhD. It’s kind of an interesting combination and maybe we can start off with Jane and tell us a little bit about what you do.

Jane: Sure, so I’m a nurse and diabetes educator and I oversee and teach in the solely online master of science in diabetes education in management at Teachers College which is the Graduate School of Education Health in Psychology at Columbia University.

Steve: Who do you teach?

Jane: It’s an interprofessional program, so we have students who represent all different disciplines; all the disciplines who represent diabetes educators basically.

Steve: Most of them are nurses, I presume?

Jane: No, not even most of them. We have nurses, dietitians, pharmacists, PT’s, social workers, health educators…

Steve: Family practitioners?

Jane: …we have a cardiologist, optometrist, exercise physiologist, you name it.

Steve: Susan, tell us a little about what you do.

Susan: So, I am a clinical psychologist and I specialize in diabetes and I work at the Behavioral Diabetes Institute, which is a nonprofit organization that’s devoted to the emotional and behavioral aspects of diabetes?

Steve: Maybe we can start off with what is the language of diabetes?

Jane: Well, we’re giving a talk on Sunday about why language matters in diabetes and we were asked to give this talk because the ADA and the AADE are working together on a language paper, and the reason that language matters and diabetes is because words are part of people’s context and people shape meaning in their experience with diabetes based on the messages that they hear around them.

Steve: How did you get interested in the language of diabetes?

Susan: I have been interested in the language of diabetes since my first day working in diabetes as a training psychologist, so I started rounding with the medical teaching team on people who were admitted with some diabetes-related medical problem at the hospital. When we would go into the room, the physicians would start talking about people like “non-compliant” and “in denial” and using words that I found kind of surprising. And as a psychologist my job is to listen. When I pulled up a chair and listened to their stories, I heard a lot of good reasons why people were struggling and I realized words like “non-compliant” didn’t describe the problem at all.

Steve: Are there specific words that cause a problem?

Jane: Well, the reason I got interested in language and diabetes actually was way back almost 30 years ago at diabetes camp. We started talking about how the words that we were hearing and reading and even saying really had an impact on people’s experience with diabetes, and so at the camp we started looking at a few words in particular, and the first and foremost was “diabetic” and we really eradicated the word “diabetic” from camp and we started calling it the Ick word. and then we stopped saying “test” and we substituted test for checking blood glucose or blood glucose monitoring. The reason for that is because it’s not a test; it’s not a pass-fail or a good/bad, which was another set of words we got rid of at camp, which was good and bad. And there’s a lot of shame blame and judgment connected to those words like good and bad and compliance and adherence. “Control” is another one that can be very heavy for people with diabetes, so those are some of the words that I have noticed and mentioned, “denial…”

Susan: Yeah, “in denial” is another one of them. It’s not necessarily the words that we want to focus on, it’s the meaning behind them. Because words evolved and what we really want to communicate is that how we talk to people and about people with diabetes really matters and the words that we use have had an impact. They can contribute to stigma. They can push people away from wanting to take action and yet other words can really make people feel more included, more listened to, and not pushed away.

Steven: You guys are doing a good job because when I first started the newsletter I used the word “diabetic” a couple of times and must had a thousand complaints.

Jane: Really?

Steve: Yeah. People are well aware of words like that. Are there other specific words that you find problematic?

Jane: You know, believe it or not, and it’s a tough word to get rid of, but “prevention” is hard for people, especially people with type 2 diabetes. We had a conversation with a gentleman recently who said: “You know, if you do everything by the book and you do everything that they say, it will prevent type 2 diabetes” when you get it anyway, you feel like a complete failure,” and so what we try to say is “risk reduction” or “reducing risks.” Then “failure” is another one when you hear and read all the time somebody failed metformin or somebody failed sulfonylureas. They didn’t fail, the drug failed them. It didn’t work and so we try the next thing

Steve: So, it’s really the psychology of the word that really makes the difference. Would you say?

Susan: I would say it’s the meaning that it communicates, a lot of times these words like prevention are communicated with good intent, so it’s not necessary that they intend to be harmful but then, that whole stigma of diabetes is that that you did something to bring this on yourself and now you’re being punished as a result. So, when we say words like “prevent,” people think if you’ve done what you’re supposed to do he wouldn’t have diabetes and that unfortunately it’s not true for a lot of people, in fact most people.

Steve: Are there specific words that cause a problem?

Jane: Well, the reason I got interested in language and diabetes actually was way back almost 30 years ago at diabetes camp. We started talking about how the words that we were hearing and reading and even saying really had an impact on people’s experience with diabetes, and so at the camp we started looking at a few words in particular, and the first and foremost was “diabetic” and we really eradicated the word “diabetic” from camp and we started calling it the Ick word. and then we stopped saying “test” and we substituted test for checking blood glucose or blood glucose monitoring. The reason for that is because it’s not a test; it’s not a pass-fail or a good/bad, which was another set of words we got rid of at camp, which was good and bad. And there’s a lot of shame blame and judgment connected to those words like good and bad and compliance and adherence. “Control” is another one that can be very heavy for people with diabetes, so those are some of the words that I have noticed and mentioned, “denial…”

Susan: Yeah, “in denial” is another one of them. It’s not necessarily the words that we want to focus on, it’s the meaning behind them. Because words evolved and what we really want to communicate is that how we talk to people and about people with diabetes really matters and the words that we use have had an impact. They can contribute to stigma. They can push people away from wanting to take action and yet other words can really make people feel more included, more listened to, and not pushed away.

Steven: You guys are doing a good job because when I first started the newsletter I used the word “diabetic” a couple of times and must had a thousand complaints.

Jane: Really?

Steve: Yeah. People are well aware of words like that. Are there other specific words that you find problematic?

Jane: You know, believe it or not, and it’s a tough word to get rid of, but “prevention” is hard for people, especially people with type 2 diabetes. We had a conversation with a gentleman recently who said: “You know, if you do everything by the book and you do everything that they say, it will prevent type 2 diabetes” when you get it anyway, you feel like a complete failure,” and so what we try to say is “risk reduction” or “reducing risks.” Then “failure” is another one when you hear and read all the time somebody failed metformin or somebody failed sulfonylureas. They didn’t fail, the drug failed them. It didn’t work and so we try the next thing

Steve: So, it’s really the psychology of the word that really makes the difference. Would you say?

Susan: I would say it’s the meaning that it communicates, a lot of times these words like prevention are communicated with good intent, so it’s not necessary that they intend to be harmful but then, that whole stigma of diabetes is that that you did something to bring this on yourself and now you’re being punished as a result. So, when we say words like “prevent,” people think if you’ve done what you’re supposed to do he wouldn’t have diabetes and that unfortunately it’s not true for a lot of people, in fact most people.

Steve: Even in the political world we see a lot of misuse, and it’s really important because that goes to funding and politicians think it’s the person’s fault because they ate too much, they didn’t exercise, and they smoke or drink…

Susan: it’s a lifestyle of disease

Steve: …they should be punished, they don’t provide the income to help that patient. So the psychology of the word I guess is really important. How do change it? How do you change, especially you deal with medical professionals, how do you get them to change the use of these words?

Jane: Well, the thing I try to focus on is like, Susan said, the meaning for the messages behind what we’re saying and if we really change our mindset to: it’s not about us the professionals; it’s about the person sitting across from us or sitting next to us and so it’s, you know, a way to get rid of the words like “compliance” and “adherence” because compliance and adherence mean the person is supposed to be doing what I want, but when really it’s about the person, it’s not about what I want; it’s not my agenda, it’s theirs, so changing that mindset from it’s not about me the professional is one way to change the words

Susan: I think that we don’t want to be the word police. It’s something that she and I have talked about, it’s that, you know, people will turn to us and say “is that okay to say” and we want to push back and then say: What do you think? How do you think that makes people feel or how do you think that that comes across? Like we want people to think about the words, not just have a substitute word because that’s what really happened with non-compliance and adherence, nonadherence they just substituted the word. Non-compliance got to be like: “You don’t do what I’m telling you to do. You’re non-compliant and we decided as a profession that was unacceptable.” So, adherence was more like following a behavior, but it got substituted so instead of saying “that non-compliant patient,” people would say that “non-adherent patient,” and so it sort of lost the meaning behind it. Again, what Jane was saying, It’s not about the health care professional, so in patient-centered care, we’re focusing on the person. There’s good reasons people do or don’t things, and rather than judging that, we ask, why? How often are you taking your medications? And describing that as a behavior rather than they’re non-adherent.

Steve: What other organizations are concerned about the diabetes language? I know ADA, obviously.

Jane: ADA and, like I said, AADE, the American Association of Diabetes Educators are working together to publish a paper about this very topic: the use of language and diabetes care and education. And other organizations that are interested, there’s one out of Australia it’s called Diabetes Australia and they published a position statement on language back in 2012 and they have followed that up with some research and lots of work on this topic. The IDF also has a language philosophy published on their website and so they are behind being mindful of our messages. I know that in the diabetes online community there is…so in the lay community, there is a lot of focus on the language of diabetes as well.

Susan: …and the American Psychological Association too. It has made recommendations about language in chronic health conditions and disabilities.

Steve: I saw a lecture not too long ago about what makes a good presenter for audiences, and the comment was that a good presenter presents the information to the audience and the audience takes that information, goes home and uses that in their practice. Then there’s a presenter who has all these wonderful slides and you walk out the door you don’t remember anything that he said, okay, and so what would you like medical professionals, family practitioners, pharmacist, nurses, dietitians to take away from your presentation? What is maybe three or four most important things?

Jane: Well, I would say put the person first and when you put the person first the language will follow. And you can’t use the word “diabetic” and put the person first. It just doesn’t work. And then the other thing for me is a strengths-based approach. So looking at what the person is doing, what they’re doing well, what they’re doing at all, and focusing on that.

Susan: Those are good ones. I think that I would add probably to think about how when we communicate about a challenge like living with diabetes, we have to think about words that can contribute to the burden of living with the disease, so when we are using words that make people feel judged and blamed, it has a big impact. As a psychologist,  I can tell you that that it contributes to anxiety, depression, diabetes distress and makes people want to pull away from being engaged with their disease rather than feeling welcomed in and encouraged.

Steve: When you’ve given the medical professional something else to think about besides blood sugars, hypertension and foot care and eye care. So, you are adding more complication into the equation.

Susan: But really, it’s a philosophy, so if you think about it, like my job isn’t to fix that person, it’s to be a good listener, treat them with respect, treat and collaborate with them, work on what they have to bring to the table in terms of strength, and actually when you approach it like that, the language sort of naturally follows.

Steve: Yes, I could see that. If you don’t want to blame the patient for eating too much, you’re going to talk to the patient in a different tone and in a different way, so it’s really the idea will actually change your words.

Jane: And something you just said that our body language and our tone are just as important as our words.

Steve: It’s the same thing when a medical professional talks about physical activity. You know, they can’t really talk about it intelligently unless they’re doing it. The patient knows that. Again, I want to thank you for your time and enjoy the rest of your stay in San Diego. Thank you.