Barriers To Communication About Diabetes Mellitus

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Original Research

Barriers To Communication About Diabetes Mellitus

J Fam Pract. 2000 June;49(6):507-512

References

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Patient: Loss of limbs…. Now there is other things, I know kidneys can fail; I know that, and the heart can stop, I know that. But I’m worried about my feet…. Anytime [there’s] a strange color, I’m here. What’s wrong with this? (I)

Pessimism

Finally, physicians in many instances expressed a sense of pessimism or melancholy with of their experience of treating patients or their knowledge of likely medical outcomes.

So nephropathy, we believe, is related to the length of time the person has had diabetes and the control they’ve had over the years. Once a patient has gross proteinuria, end-stage renal failure or kidney transplant is within 5 years. What I’ve heard from the nephrologist is once you have microalbuminuria it’s like a 15-year type of progression from microalbuminuria to end-stage renal disease. The ophthalmologists believe that anyone who’s had diabetes over 10 years, you can detect some degree of retinopathy. (Fourth-year medical student, L)

I think medical students get the experience of diabetes in the hospital frequently, so they see diabetics that are having their second cardiac bypass, or having their legs cut off, or on dialysis. They see the worst end of diabetes instead of seeing the beginning. And so we come into working with diabetics without a lot of hope, and so we sort of go, “this is a horrible disease.” And someone who is diabetic doesn’t want to hear that. (attending, I)

Patients who do not have friends or relatives with severe complications associated with diabetes, however, are often hopeful or at least uncertain about what the future will bring.

Discussion

The Theme of Control

Among the themes revealed through content analysis, control is both the most common and the most complex. Used ubiquitously in both interviews and during observations of clinicians and patients, it has so many connotations that confusion is unavoidable. It is used by patients to refer to things the patient actually does to affect blood sugar as well as other outcomes (like his or her emotional state or the reactions of other people). In the physician narratives, “control” is generally thought of as an objective measurable condition, a range in which a patient’s blood sugar is thought to be relatively healthy. Where personal or subjective factors enter the equation, “compliance” is the operative physician term, although slippage between the 2 terms-compliance and control-is not uncommon. The ambiguity surrounding the term “control” highlights the fact that clinicians are uncertain about the agency or pathophysiology of this disease. Is the patient responsible for poor metabolic control, or do bad outcomes happen for reasons beyond his or her control? Are clinicians and patients in agreement about what might be in the patient’s control? The answers to these questions have major implications for the management of diabetes. If poor control is viewed as a problem of poor compliance (compliance used in the sense of doing something voluntarily and relatively easily), it is easy to blame the patient, especially if he or she is obese, poor, unemployed, or poorly educated. If poor control is not a result of poor compliance, however, or if compliance, as defined by the physician, beyond the practical ability of the patient, then the physician will look for other strategies to increase metabolic control.

Control represents a core value in physician culture^11,24 rather than indisputable scientific wisdom. Tight control of blood sugar levels is a principle on which doctors have acted since long before the recent studies showing its effectiveness for preventing poor long-term outcomes.^25,26

The Themes of Frustration, Long-Term Outcomes, and Pessimism

The frustration experienced by physicians caring for patients with diabetes results from many things, some of which are clearly avoidable. At the beginning of the research process, we hypothesized that this frustration was primarily due to the difference in the frames^27,28 or explanatory models^29,30 that patients and physicians use in thinking about diabetes. This hypothesis was borne out by radical differences in the symptoms and signs the respective parties focus on during treatment, most notably the distinction between internal and external signs.

This hypothesis is also justified by the differences between the perspective of patients who generally do not know where the disease will end up, and the more teleological perspective of the physician who can measure and time the breakdown of organ systems. From the physician’s viewpoint, that breakdown is more likely when control is less than optimal. This perspective leads to a profound pessimism, which not only belies the more optimistic tone of the medical consultation but leads to a series of conundrums. For example, while physicians privately acknowledge their doubts about the benefits of glycemic control or whether it is even possible for their patients will lose weight, they often end up blaming their patients for negative outcomes.