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7. To Comply or Not to Comply? In Search of the Real Question

To The Editor:

After reading your recent editorial "Diabetes Education (for Doctors)," whose concerns I deeply share, I would like to comment on my experience as an Argentine diabetologist doing diabetes education for the local Hispanic community in Northern California.

Like many of your readers' ancestors, I came to America chasing a dream, not one of gold mines or better work conditions, but one fed by my awe at America's rich intellectual and scientific production, which seemed to set the foundation for Americans' pursuit of human rights and social change. Several American Diabetes Association (ADA) and American Association of Diabetes Educators conventions introduced me to colleagues in the diabetes community. These colleagues seemed to acknowledge the need to be medically, psychosocially, and culturally competent as well as politically committed and willing to exercise, in the words of Dr. Jay Skyler, "unrestrained creativity" in treating people with diabetes.

Why, then, was my experience as coordinator of a diabetes education program for Latinos in San Jose so appalling? I was located in the center of Silicon Valley, less than 1 hour away from the major teaching and research center at Stanford University. And yet for months, I heard stories of doctors diagnosing "mild diabetes," limiting dietary guidelines to the sole recommendation to "keep away from sugar and fat," displaying a complete ignorance of new medications, and attributing failure to control blood glucose to patients' cultural beliefs, and/or their noncompliance with their diabetic diets. All of this despite the clarity of the 1999 ADA Clinical Practice Recommendations on these points.

Being an educator, social scientist, and field researcher proved to be a fascinating, albeit painful, experience. I feverishly took notes on tortillas, bananas, and, of course, sugar, which were placed on the "forbidden" column of diet sheets, while green apples, for obscure reasons, held the privileged place of "good food for diabetics."

These beliefs and recommendations were not from indigenous healers, lay health personnel, or helpful next-door neighbors, but rather came from fully licensed health care providers, to whom these patients had access only by paying fees they could barely afford.

One patient said her doctor told her that her diabetes did not require insulin, despite the fact that her average blood glucose for the past 3 years was 400 mg/dl on the maximum dose of sulfonylureas. Although Mexican, she dutifully avoided tortillas and followed other dietary restrictions to no avail. She came to me for assistance, feeling helpless, after being accused of cheating on her diet.

An 11-year-old Hispanic boy was told by his pediatrician that his blood glucose level would improve (it averaged 300 mg/dl) only if he kept away from sweets. The boy, who was considered a problematic student from a minority culture, was on a split-mixed dose of NPH and regular insulin. I trained the family in carbohydrate counting, self-monitoring of blood glucose, and using multiple doses of lispro (Humalog) insulin with injection pens so that they could fine-tune the boy's medication and control his glycemia. However, his doctor was upset that I had changed the boy's prescribed dose of insulin.

My position and license allowed me to educate patients, but not to override a licensed doctor's prescriptions, so finally I had to quit my job.

Why this painful reality? What about the billions of dollars invested in research that shows beyond any reasonable doubt that diabetes is essentially a self-managed disease, requiring on the part of the provider technical expertise and capacity to train patients in decision making?

What about the numerous studies that show that the adequate treatment of diabetes, albeit costly, pays off in the long run, not just in dollars but in better quality of life? Do Hispanics' particular cultural beliefs account for their lack of access to adequate health services and competent health professionals? Or are they not able to follow prescriptions correctly due to language barriers?

I'm afraid not. Research presented at the June 1999 ADA Annual Meeting and Scientific Sessions showed that, while primary care doctors have listed "diabetic patients' noncompliance" as a major barrier to treating diabetes, a group of very literate diabetic patients listed as major barriers health care practitioners' insufficient knowledge about diabetes, their poor understanding of human behavior, and their use of blame to explain failures in treatment. These patients also identified as a barrier a profit-driven health care system that is inadequate to deal with the needs of this very complex chronic disease.

The medical community has made improvements in understanding the importance of making its messages culturally relevant. However, it has not done nearly as well in determining whether what we expect patients to comply with makes any medical sense at all. Under certain conditions, compliance would indeed be hazardous to our patients' health.

I suspect the answers to my questions can be found somewhere in between. Patients do need to take responsibility for their health to the best of their ability. However, it is equally important that profit not be the starting point for the provision of health care. Insofar as health is not understood to be a right of every human being and a shared social responsibility, our collective future is grim.

So can we, as individual health professionals, improve this situation? In principle, we are responsible for our day-to-day contact with patients, especially primary care physicians who take care of more than 75% of all patients with diabetes. Living with diabetes is not easy. Neither is being a primary care physician facing dozens of challenges other than diabetes.

However, having diabetes is not a choice, whereas becoming a doctor is.

I don't know any easy solutions to these pressing questions, but together with Mary Poppins I believe that "with a tuppence for paper and string, we can make our own set of wings." At the very least, we can make our profession more spiritually rewarding. And, who knows, maybe we'll also make a difference.

--Author Unknown

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