Chronic disease is exactly that, chronic. Therefore, a diagnosis of any chronic disease is life altering. I spend the majority of my days doing my best to take care of patients with diabetes. For their sakes, I ask them to be compliant, that is, to follow the many guidelines carefully so they stay as healthy as possible and avoid long-term complications of their disease.
Many times, a patient’s condition is not well controlled due to barriers that are preventing his successful compliance such as depression, poor insight into the disease, failure to adjust to the change in lifestyle that comes with the condition, or denial. Addressing these compliance barriers will hopefully facilitate future success in preventing complications.
In an attempt to understand a patient’s challenges to stay compliant, I decided to live the life of one of my patients for a bit. I recently wore an insulin pump for 72 hours. This was an extremely insightful experience!
Getting the Insulin Pump
The hours leading up to the insertion of the insulin pump, which is a small catheter underneath the skin (smaller than an IV) connected to a reservoir of insulin (for me it was saline), was surprisingly nerve racking. I was uncertain what it would feel like physically and emotionally to be connected to this device. What would it feel like to check my own blood sugar, to actually go through the process of counting carbs to figure out my correct “insulin” dose?
I met with the insulin pump representative who walked me through how to use the pump. Already I had learned a lot and was better prepared to treat my patients, and the pump wasn’t even inserted yet!
Inserting the pump underneath my skin was basically painless. I was ready and excited to go through this exercise.
Monitoring My Blood
It was late afternoon, a few hours since the pump had been inserted when I started feeling hungry. I sensed that my blood sugar was running low (I have been told I get cranky when this happens!). I scrambled to grab my supplies to monitor my blood sugar for the first time.
Since I had never done this on myself before, I failed miserably. At first, I didn’t get enough blood, and then the finger was at the wrong angle. Whew, I finally got it. I was relieved that my blood sugar was in the normal range. I can imagine that, over time, this may get easier to do, but also may become harder both emotionally and physically. Off to dinner I went.
The menu arrived and I picked out my appetizer and main course. I subsequently pulled out my carb counting book. Wow, that was a lot of carbs I ordered. I figured about 90 carbs, so I programmed the pump to give the correct units (somewhere around six units). It felt like I was giving myself a lot of units, despite the fact that many of my patients are on much higher amounts of insulin. I wondered how my patients feel as they go through this process of checking their blood sugar prior to eating at a restaurant and then have to time the insulin appropriately to cover the meal. I wondered how individuals handled the routine. So far, I was off to a decent start. I was determined to keep up my compliance.
Logging Blood Checks
Prior to bedtime I struggled to successfully check my blood sugar again. I still needed practice. That’s when I remembered that I forgot to log into my blood glucose book. This is the finger-stick diary that we rely on patients to bring to their appointments so we can adjust their blood sugar (the machine and newer devices work well, too).
Prior to working out the following morning, I set my temporary basal rate, which made me feel proud that I had done as I was taught. Although it is common to hear that doctors are not the best patients, I think doctors tend to have a type A personality and probably obsess about doing well in these kinds of tasks. I wondered what characteristics are common in “good” patients. Is there a set of unifying personality traits? These musings gave me interesting things to think about as I approach and help patients manage themselves.
The last 36 hours of my experiment to live the life of one of my patients went relatively smoothly. I settled into the role and at times forgot that I was attached to the pump, except when I ate and gave myself the “insulin” dose.
I had some powerful interactions with patients during this time. I showed two of my patients who currently have uncontrolled diabetes that I was wearing the pump and they were amazed that I was also going through the process of checking my finger sticks. This opened up a discussion about what it felt like to be wearing the pump, what it is like to sleep with it on and remove it prior to a shower, and so on. I know for sure that one of these patients is in the process of being set up for a pump, which will ideally improve her diabetic control and hopefully prevent long-term complications of this chronic disease. I hope it helped her hearing that I have a small inkling into what she’s going through.
While I always had respect and empathy for my patients, I now have a whole new perspective. I know what it feels like to wince in anticipation of the needle stick, to have people looking at you as you read your carb counting book in a restaurant. Compliance is essential, but I now have a better idea that to continuously take care of yourself so precisely requires a lot of work and commitment.Gregory B. Dodell, MD is a Junior Assistant Attending-Division of Endocrinology, Diabetes and Nutrition for St. Luke’s and Roosevelt Hospitals.