Which would you rather have: diabetes or cancer?
Michael Weiss, former chairman of the American Diabetes Association, was diagnosed with diabetes at the age of 35. He struggled with the frequent testing of blood glucose levels, insulin injections, adjustments in diet, and efforts to prevent complications like retinopathy and foot ulcers. Getting weighed and waiting to find out glycosylated hemoglobin (HbAIc) levels were terrifying experiences. Messages of failure lurked everywhere.
More than 20 years later, he received a diagnosis of colon cancer. The treatment required very little of him: no ongoing lifestyle modifications, no sticking himself with lancets and needles, no concerns about his condition fluctuating unexpectedly in potentially deadly ways. And there was an outpouring of support and concern from family, friends, and even clinicians that had not been offered when he got the diabetes diagnosis. For him, cancer was easy compared with diabetes.
Weiss shared his story at a symposium, the State of the Science on Nursing Best Practices for Diabetes Self-Management, held in Philadelphia on September 15 and 16, 2006, and sponsored by AJN, the American Diabetes Association, the American Association of Diabetes Educators, the Harvard Joslin Diabetes Center, and the University of Pennsylvania. His comparison of living with cancer and living with diabetes showed me the extent to which providers underestimate the physical, emotional, and technical complexities of diabetes self-management. (Highlights of his presentation are included in our report of this symposium, available online at http://www.nursingcenter.com/ajndiabetes. Also see the executive summary on page 73.)
His words brought to mind my experience more than 30 years ago with an adolescent girl repeatedly admitted to our medical ICU with type 1 diabetes. We blamed her for her hyperglycemic episodes, assuming she simply wasn't self-medicating or eating right (not that we were). We kept checking the drawer of her bedside stand for hidden food. I suspect that many providers regard patients with poorly controlled diabetes this way today.
Nurses and other providers may assume that patients have the tools they need to keep their blood sugar in a normal range. Aaron Kowalski, director of strategic research projects at the Juvenile Diabetes Research Foundation, discussed at the symposium his and his brother's ways of coping with type 1 diabetes. Both had repeated episodes of hyperglycemia and hypoglycemia. His brother's hypoglycemia unawareness led to a car accident when he lost consciousness at the wheel. Kowalski described the "transformation" brought on by their use of continuous blood glucose monitors: their health and their lives dramatically improved.
As reported in the April 11 issue of the Journal of the American Medical Association, 14 of 15 people with type 1 diabetes were able to stop insulin injections for varying periods after being treated with their own stem cells. The uncontrolled study suggests that we may one day be able to eliminate type 1 diabetes, but type 2 will persist in a society grappling with an epidemic of obesity.
Too many nurses are inadequately prepared to help patients better manage their diabetes. Perhaps all nurses who see patients with diabetes should be required to demonstrate competency in helping them manage their care, just as nurses are required to demonstrate competency in infection control. Mostly, we must put an end to the guilt trips that we impose on those whose disease isn't well managed. Awaiting HbAIc levels, having your feet or eyes examined, and getting your kidney function checked shouldn't be terrifying experiences; they should be opportunities for patients to voice their concerns-and for nurses to listen and to give the support they would give to patients with cancer.
Please examine the report of our symposium, which explores what is known-and unknown-about diabetes self-management. I hope that you'll use it as a basis for discussing how to better help your patients live well with diabetes.