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[IP] Fwd: To Comply or Not To Comply (Clinical Diabetes)

       Ellen (CamelsRFun) forwarded this very interesting post to me this 
morning, so I'm passing it on to you....Once again serves to underscore that 
our best efforts are often thwarted by the very people who should be 
endorsing & championing such dedicated self-management. I'm beginning to 
wonder if things might have evolved more efficiently & smoothly had the 
advent of the DCCT results, new nutritional guidelines for carb counting, 
Humalog and pump therapy NOT coincided with pervasive managed care systems 
that undermined even the most dedicated physicians efforts???? Just a 
Regards, Renee

-- BEGIN included message

To Comply or Not to Comply: In Search of the Real Question 


To The Editor: 
After reading your recent editorial "Diabetes Education (for Doctors),"1
 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,2 "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 

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 

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 Sessions6 showed that, while primary care doctors have 
listed "diabetic patients' noncompliance" as a major barrier to treating 
diabetes,7 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.8-10 However, it 
has not done nearly as well in determining whether what we expect 
patients to comply with makes any medical sense at all.11-13 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.14,15 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.16 Living with diabetes is not easy.17
 Neither is being a primary care physician facing dozens of challenges 
other than diabetes.18 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 our 
tuppence of paper and strings, we will have 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. 

-- END included message