The little things

Pediatrics for Parents, Sept, 2003 by John E. Monaco

We certainly live in medically interesting times. Patients feel depersonalized, hospitals are financially strapped, doctors fear malpractice suits at every turn, and insurance companies seem to run everything.

Our latest challenge comes from the most recent government regulation to go into effect. It is designed to protect patient's privacy, and once the bugs are worked out I'm sure it will. But in its initial stages it has actually prevented the flow of important medical information.

Pressures and changes like this can sometimes foster cynicism. Thanks to our patients, children and their families, we are reminded of why we are here, sometimes just in the nick of time.

Recently we cared for an 11 year old boy with diabetes. He was from out of town, visiting with relatives in our community. They unfortunately were not familiar with his disease, so when his diabetes began to spiral out of control, partially because with all the excitement of his visit he had "forgotten" to take his insulin, they did not pick up on the subtle signs that his mother would have ordinarily noticed. By the time he reached us, he was nearly comatose.

His blood sugar was sky high, and he was profoundly dehydrated and acidotic from his body's reaction to lack of insulin. He was admitted to our pediatric ICU in critical condition, and his first night with us was quite rocky.

He recovered rapidly, however, but remained with us for several days in order to achieve better control of his blood sugar and to be sure that he and his hosts understood the importance of monitoring his condition. It was OK to be on vacation, but he could never take a vacation from his disease.

Once he felt better, his charming and energetic personality was more evident, and, as happens with many kids in the hospital, he became bored. TV wasn't satisfying and he was frustrated that the staff was too busy to play video games with him.

As it happened, we had a somewhat sick baby in the PICU during the same period. Her parents were diligently at the bedside day and night. She was only three months old, so other than holding, changing and feeding, there was not much more for the parents to do while she re-covered.

The baby's father became interested in our diabetic patient, mainly because he felt sorry for his predicament--being alone and out of town with no close family--and because he seemed so bored. Naturally he began to ask the nursing staff questions about the boy. Questions, due to the new "privacy guidelines," that they technically could not answer.

To him, it was simple human nature to inquire about another child's illness. It was a sign of caring, not an invasion of privacy. Unfortunately, rules and regulations don't cover theses subtleties of the human condition. As this caring father became frustrated, the nurses grew more concerned and asked me to speak to him.

"All I want to do is visit with him, maybe play some video games," he confessed to me. "I don't need to know any medical information ... I just feel so bad for him, all alone and bored."

That was enough for me. I told him we would look the other way. The next morning, while making rounds I walked into the boy's room. He had been transferred to the regular floor the day before. There, sitting next to his bed, was the father of the baby in the PICU. They both held controllers and were shrieking and shouting as they battled each other in whatever video game they had been playing. It turned out the father had brought a bunch of his old games from home and given them to the boy. I had not seen our diabetic patient so happy since he had been admitted to us.

I remembered thinking that there was more healing going on in that room than any we could have accomplished with medicine at that point. I also remembered hoping the nursing administrators would not happen by at that moment. They would not understand how much good could come from breaking the rules.

John E. Monaco, M.D., is board certified in both Pediatrics and Pediatric Critical Care. He lives and works in Tampa, Florida. He welcomes your comments, suggestions, and thoughts on his observations and experiences via email at johnmonaco@pedsforparemts.com