Anger vs. compassion. (Children in Hospitals ...).
Occasionally we run into patients, and their families, who take us through all of these emotions. The challenge for us as caregivers is to accurately identify what we are feeling, and then to try to make those feelings productive. Let me give you an example.
Joshua is a 15 month old boy who was born with "short gut syndrome." Due to some accident of in utero development, he was born with very little small bowel -- or much less than he needs to effectively digest and absorb his food. So, he has spent the last 15 months with a surgically placed tube directly into his stomach delivering elemental formula, as well as an intravenous line surgically placed in his superior vena cava for the administration of hyperalimenation. His family has no insurance, so the state has provided him with 12 hours a day home nursing. Here is where the problems begin.
Much of the rest of the time Joshua is cared for by his two teen aged cousins. His mother and aunt, his adult caretakers, both have jobs away from home much of the time. Needless to say, these probably well meaning teens (early teens at that) have a variable level of understanding of Joshua's complex medical needs. This is exemplified by the fact that when he cries, and they can't console him, they give him a bottle with milk from the refrigerator. This causes Joshua to get horrendous diarrhea since he is completely unable to digest cow's milk.
I was introduced to Joshua late one weekend night by the emergency room doctor who called to let me know that this young boy had a "spiral fracture" of his femur (the large bone of the leg) and that child abuse was strongly suspected. I cringed, as I always do in this scenario, but agreed that the PICU was a good place to watch him that night since he would undoubtedly require aggressive IV narcotics for pain and sedation for the muscle spasms he would undoubtedly experience. Also, kids like this need to be watched especially closely since parents have a tendency to try to sneak them out of the hospital. But the fractured leg wasn't his only problem.
Even cursory examination revealed that his central IV line location appeared infected, and he had the worst diaper rash we had ever seen. Worst of all, he was the saddest little boy you could imagine and only wanted to be held -- all the time. Since his family was rarely present caring for him, this put a tremendous demand on the nurses (who frankly would have rather hold Joshua than attend to some of their other duties). Naturally, emotions ran high among the staff.
But even this would have been tolerable, had it not been for the anger of the family ... that's right, the anger. It seemed we could do nothing right. We didn't know how to dress the central line (an intravenous line that inserted into a deep vein) or the gastric tube. We didn't know how he liked to be held. Why did we put on such a huge cast knowing that he had frequent diarrhea? And why couldn't we do something to make him more comfortable? All this amidst constant threats to take him to the other hospital across town.
Soon, the staff began to harbor anger towards Joshua's family, and this is when the real challenge began. It was crucial, in fact it was our absolute duty, to stay focused. We had to keep our eye on the ball. Taking care of Joshua was our primary goal. In doing so we might not make everyone happy, but as long as he was taken care of, we had to be happy. And realizing that became liberating. Joshua's smiles became much more important than family recriminations, and with those little rewards, we were much more able to do our jobs.
We were forced to identify and integrate all the emotions we faced in this stressful scenario, and channel them to the most productive plan for the course at hand. It was a lesson we hope to never forget, and to teach every chance we get.
John Monaco, MD, is pediatricians who specializes in pediatric intensive care. He welcomes your comments.
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|Author:||Monaco, John E.|
|Publication:||Pediatrics for Parents|
|Article Type:||Brief Article|
|Date:||Sep 1, 2001|
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