Putting People Over the Disease in the Care Visit

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Melinda Maryniuk, co-author of a paper on people first language

“Diabetic.” “Non-compliant.” “Morbidly obese.”

These terms and more are being called out in the diabetes community as a judgmental barrier to improving a patient’s health. An alternate approach called People First Language was suggested in a recent commentary published in Clinical Diabetes written by Melinda Maryniuk, M.Ed., R.D., C.D.E., Director, Care Programs at Joslin and Jane Dickinson, R.N., Ph.D., C.D.E., at Teachers College, Columbia University.

“Through messages that empower people with diabetes, we can build trust and rapport,” they write. “Putting the person first helps us truly focus on and empower individuals; it sends the message that we think the person is more important than the disease or the numbers used to gauge its control.”

Speaking of Diabetes caught up with Melinda to discuss the paper.

Speaking of Diabetes: It seems like this idea of People First Language goes along with shared decision making, the idea that patients and doctors should arrive at care goals together through open conversation. How can this almost partnership between healthcare provider and patient improve care? 

Melinda Maryniuk: The intent of the language movement is to create more trusting and open communications between patient and provider while minimizing the shame, blame and guilt that can often accompany medical visits. Language should be non-judgmental and emphasize what the person is doing well (sometimes referred to as “strength’s based”.)  For example, health care providers are guided to avoid making statements like “your blood sugar levels look good” but instead, “your blood glucose levels are within target most of the time.” Or instead of “looks like you’re not checking your blood glucose very often— and you only do it a few times a week.  You need to do better,” that can be framed in a more positive way, like: “It looks like you’re checking your blood glucose twice a week. What makes it possible to do it on those days, and how might you increase it on a few other days?”

Framing conversations in a more positive way – facilitates more productive conversations and thus leads to better collaborative care /shared decision making.  And, ultimately, better outcomes.

SD: What made you and your co-writer decide to write this paper now?

MM: It’s time! Jane has been talking about this a lot and has been doing some research in the area.  She is a PWD – T1 (person with type 1 diabetes) and is passionate about the topic. Also, it was her idea to propose a position paper. It started with American Association of Diabetes Educators and now it has grown to include the American Diabetes Association (ADA). That paper is almost done and aiming to be released at the ADA Scientific Sessions in June. We’re doing a session on it.

There are several diabetes organizations, including Diabetes Australia and the International Diabetes Federation that have been recently published position papers on the use of language in diabetes care and these have been gaining much attention. The ADA and AADE have recently come together to create a paper that both reviews the literature and makes recommendations for more person-centered language.

SD: How can patients ask their healthcare providers to shift to using People First Language? How can they start that conversation in a way that a healthcare provider will respond to? 

MM: Know that we, through articles like this and the soon-to-be-released position paper, are trying to get the word directly to physicians and health care providers, including diabetes educators.

However, in the meantime, you have the right to express your concerns and feelings regarding how different words and use of language makes you feel. At the same time, we recognize that not everyone is bothered by the same words or phrases. Let your health care provider (as well as friends and family members!) know if there are certain words or phrases that bother you. For example, some people don’t like to be called “a diabetic.” If your HCP makes a comment such as “since you are a diabetic, check your feet more often to avoid risks of foot problems,” you can kindly let them know that you prefer not to be called “a diabetic” but that there are other ways this could be said, such as “since you have diabetes…” You are so much more than a label and diabetes is only one part of who you are.

2 Responses to Putting People Over the Disease in the Care Visit

  1. Cindy Lou says:

    As a patient I want to hear a lot less about chronic and progressive and much more about what I can do to control my Type 2 with my diet and exercise and choices I make.

  2. A diagnosis should never take over a patient’s identity and like stated in this important article the way in which the healthcare system addresses these patients needs to be more cognizant.

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