The Nemours Alfred I. DuPont Hospital for Children was gracious enough to welcome the fellows last week. We were able to meet with patients, clinicians and administrators. We followed patients as they saw Certified Diabetes Educators (CDEs), Psychologists, Doctors and Dietitians throughout Nemours’ pediatric diabetes ward. Everyone that showed us around was incredibly gracious, and truly inspiring to watch work.
Diabetes, like other chronic illnesses, presents unique challenges in each individual case, which is amplified in children. Dietary changed for the child quickly turn into dietary changes in the household, psychological strain in the family can quickly become strain in diabetes treatment and a missed insulin injection can result into a missed day of work for a parent.
As I watched as a young child learned to use an insulin pen, pump and continuous glucose monitor, I could not help but admire the beauty of the technology as it married with the child’s needs. The new technology allowed doctors a window into patient blood glucose data, some of which is collected every five minutes and transmitted over Bluetooth. Parents can monitor blood sugar from the sidelines of soccer games, doctors can look up data to prevent emergency room visits, and overall stress can be lowered and quality of life is raised. But what was truly amazing was not the technology but the people.
Some of the technology was cumbersome, unrefined or just old. One mom was worried that the pump was more trouble that it was worth, and she was making a very valid point. On the other hand the nurses were light on their feet, adapting to each person. Between appointments they traded notes, briefed each other on the next round of patients, researched cases and provided moral support to each other. No matter the age or demographic of the patient, nor the nature or quality of their care, the nurse put their entire effort into trying to improve health. Their love was truly inspiring, we were all amazed as we watched entire medical teams pool their knowledge trying to make each individuals care the best it could be.
It also highlighted the problem with the pumps and the pens. When a patient’s family has given up on the care plan the pen cannot change, it won’t remind them the merits of care or urge them to take their medicine. If a child is scared of taking their shots in their stomach it can’t show them the acceptable ways to give the shot on the lower back. An insulin pump can’t incorporate low carb snacks into a child’s life in such a way that they don’t feel alienated.
As an engineer I immediately jump to trying to make a smarter pump, a better needle or an app to smooth out the bumps in care. Surely I could make a pen that told the user how to change injection locations, or a pump that chimed with motivation quotes through the day. But each patient has their own micro-chasm of needs, and no one is the same as another. The fancy equipment didn’t seem to correlate to care outcomes; some of the best A1c values came from some of the oldest technology. So, as I try and decipher the nebulous chronic illness that is type 2 diabetes, I look instead to the nurses and the caregivers. The one thing that each success had in common was a pillar within the care. In each patient there were moments of stress, when education, time, or sometimes just a shoulder to lean on was needed. There was a person who was there to be stern when necessary, or loving, empathetic, even aloof. A sustainable solution for type 2 diabetes care will come with capturing this lightning in a bottle.