Beware Abbreviated Explanations That May Undermine Your Meaning, Patients’ Understanding

Children can be unbelievably wise. Unhampered by social expectations, they say exactly what they think. My sweet grandson was recently hospitalized and required antibiotics for an infection. He is only 5. When the kind and very capable pediatric nurse was starting his IV, he was not happy about it. But even so, he sat still while she set everything up and tried to place the IV. Unfortunately, she could not thread the catheter which meant she had to try again. As she got everything ready for the second try she tried to console him by saying, “I’m so sorry. I have to try again. It’s going to be okay.” His response was unfiltered and immediate. “It is not okay.” 

He looked especially small in the big hospital bed, punky and droopy eyed. Yet he was clear and strong voiced when he added, “I did not give you permission.” Of course, he was crying and wiggling around as he said it, after all, he’s a 5-year-old. With or without permission he needed the IV and she expertly place it the second time. I don’t know how pediatric nurses do it but they have my respect.

As anxious as I was in the moment, he’d been febrile for nearly 3 weeks and no one could figure out what was going on, and despite those concerns, I smiled when he said it. Because, of course, he was right. He had not given anyone permission. It was not okay. And yet they were doing things to him that he did not want. I was amazed at how articulate he was for a 5-year-old. What is the old saying? Out of the mouth of babes. Fortunately, a course of antibiotics was all he needed and he recovered quickly. 

The idea of what he said stayed with me. The experience of him vulnerable and in the hospital made me think of my oncology patients. I know they don’t look the way they would if they were up and walking around, at least logically I can think that. Yet I am presented with them as they are, hospitalized and ill, looking punky and droopy and not at all themselves. Even when I’ve never met them, I know I am not seeing the person they see themselves as. They undergo so many things: surgery, IVs, chemo, all kinds of side effects. More doctor appointments and testing than anyone would ever like to have. Given half a chance, instead of sitting quietly and letting us care for them they might say, “I did not give permission to be sick.”No one wants to be sick and go through all of that. Of course, some might argue that they consented for all of the interventions, but truly, they have no more control than my little grandson did.

This made me think of the times I’ve tried to console or soothe and said, “It’s going to be okay.” What I meant is that I was there to help care for them. What I meant was I anticipated a good response to chemo or a reversal of low blood counts or the clearing of a secondary infection. Those are the “it’s-going-to-be-okay” sayings that are temporary or fixed on a particular small situation rather than the larger one at hand. How often do we truly understand the loss of control our patients experience? How many times have our patients faced a second or third hospitalization or complication? What do those words mean to them?