Frustration was also tied to specific efforts by clinicians to perform patient education, particularly in the areas of diet and exercise. In this area clinicians highlighted their own lack of preparation or the difficulty they believed patients would have meeting tough dietary recommendations.
I have people who have a hard time following the dietary recommendations. They may not have enough money to buy [fresh] fruits and vegetables…. The first thing…is to talk to them about nutrition,…but we aren’t taught, as doctors, nutrition. (attending, I)
The diet’s the main thing, them following the diet. And it’s hard for me to teach them thinking I would have a hard time with this diet myself. (nurse, I)
I think most of them have 10 or 15 concerns that are ahead of the diabetes, so we’re having to get throughall those things before we hit the behavior change in dealing with diabetes. You know, child-care issues, transportation issues, violence. Everything. You’ve got to find out those things that are ahead of the diabetes. (PA, I)
Another major source of frustration is related to counseling patients about the risks of diabetes. In the face-to-face interviews, several clinicians emphasized the complexity of the disease or the difficulty of making asymptomatic patients aware of the risk of devastating consequences from “uncontrolled” diabetes.
For the most part there’s no symptoms…. They don’t feel better necessarily once they’re being treated. (attending)
It’s frustrating for the patients, because a lot of times they don’t understand…. There’s not necessarily symptoms associated with diabetes. (attending, I)
Diabetes encompasses so many things…their whole life. (nurse, I)
HIV patients see hope when they do something that makes a positive change in their life…whereas diabetics have a harder time getting through to that. (PA, I)
As a result of their frustration with attempts to educate and counsel patients, clinicians often relied on numbers and drugs to attempt to manage diabetes.
It’s hard to talk to them about nutrition, and you try to talk to them about exercise, and again a lot of times that’s hard for our patients who live in urban areas where they don’t want to walk outside, or there’s no place for them to exercise…so quickly you move to drugs. (attending, I)
Thus, an attending with a good “recipe” for teaching the “meds” was greatly appreciated. In an interview, a PA revealed that the head of the diabetes clinic was great at discussing “the meds,” and was a good mentor in clinic, but virtually ignored patient care issues.
I was taught by Dr X, and she is wonderful. She runs a diabetes clinic, and she’s real frank about talking about diabetes…. We talked a lot about treatments and, you know, what are the meds to begin with, but as far as behavior change and how to do any of that kind of stuff-the negotiating, diabetes management-we didn’t talk about that. A real cookbook type of thing…when we got in the clinic I think we saw the subtleties…or not-so-subtleties of treating diabetes. (I)
It appears that the formal teaching is about drugs; the behavioral management is picked up more informally, and therefore, may be perceived by the clinician-in-training as less valued. Thus, instead of education and counseling issues, the case presentations by resident physicians, students, and other clinicians to attending physicians tended to focus on numbers (the patient’s current blood sugar or glycohemoglobin level), compliance with treatment plans for oral hypoglycemic agents or insulin, and whether to increase drug therapy. As this represents the culturally expected behavior of physicians in clinical teaching settings, it took overt encouragement by the attending supervisor to focus their attention on other issues.
Long-Term Outcomes
Another major source of frustration for both clinicians and patients stems from the radical differences in the signs and symptoms that patients and clinicians focus on in treatment. Physicians are primarily concerned with the internal states or processes that lead to serious morbidity and death.
So I just want to go over some of the big complications and see how we can intervene; the biggest concern is diabetic nephropathy, usually very severe retinopathy…nephropathy. (L)
In contrast, the patients we spoke with seemed relatively unconcerned about the effect of diabetes on internal organs and rarely mentioned the heart, pancreas, or kidneys unless they were specifically asked about them. Patients did, however, express grave concern about wounds that would not heal, amputation, and external manifestations of the disease, such as blindness or other symptoms which reveal their condition to the public.
Interviewer: What do you fear most about diabetes?