Weighing something

The other night, I started writing about one of the things I hate about the NICU, which is that no one there talks about death. I didn't finish it, so I didn't post it, thinking I'd get to it the next night.

The following morning, instead of our usual attending rounds, we had a "debriefing," which is basically a meeting of everyone in the NICU involved in the care of a patient who has died. As these things often are, it was a lovely example of the support that people can show for each other at moments when they question their own actions and motives. But beyond that, the session helped me understand why people in the NICU do what they do.

For an intern like me, there are plenty of things to hate about the NICU: long hours, patients we often can't touch and can't ever talk to, questionable ethics of some of the things we do. But there's also a lot to like: acuity of disease, opportunities to educate families, interesting physiology, occasional adrenaline rushes, and the odd chance to "test neurological status" by letting a baby suck on your finger. In our NICU, there is also as much free coffee as a person can drink, and really, isn't that enough?

But in the NICU-and in pediatric medicine in general-we don't talk about death. This is in direct contrast to adult medicine, where we are trained to reflexively consider what will happen if, instead of making patients better, we make them much, much worse. As part of every admission to an adult medicine service, we determine the "code status" of each patient, asking when we need to stop trying to make them live. Some people want us to withdraw care when they're no longer able to breathe independently, others when their heart stops beating. Some people don't ever want us to stop, and that's fine, too-but we ask.

In the NICU, we don't ask-at least, not until it's hardly a question any more. And in not asking, it seemed to me that we were choosing for these babies a lifetime of painful existence-the kind of existence that we give adult patients the option of avoiding having to live for even one unnecessary day.

But that's not exactly what's happening, and I didn't get it until I heard the NICU staff talk about it. Everyone who works in the NICU is at times conflicted about whether intervening to prolong the lives there is ultimately to their patients' benefit. Nevertheless, they do intervene, and they do it for two reasons.

The first is their committment to families. Their best reason to do what they do is to give parents time to align their hopes and dreams for their children with the reality of their prognoses, and on the basis of that, to make choices. Their next best reason is their own experience: about once a week, a child comes into the NICU who, years earlier, doctors thought would never leave it alive. Our smartest attendings can't count the number of times they've been wrong about a child's prognosis; it's hard to recommend withdrawal of care from a sick baby when you've seen equally sick ones live well.

The non-longitudinal nature of a resident's contact with the NICU and our limited contact with the children who actually make it out of there makes it difficult to keep these motives in mind. And it's hard to understand what a difficult choice it is for a family to withdraw care from their child if you're not sure you have the instinct to breed, or if you see disability as a burden to a patient and a family. I easily fit into both of these categories.

But I can understand that in addition to treating sick infants, we're treating anguished parents, and that you can't force an adult to come to terms with a loss. Before they can let their child go, some parents need to see that everything that can be done has been done-and sometimes, we agree to cause a child prolonged suffering in order to fill that need. We rationalize doing this by remembering the times when the suffering, against all odds, resulted in a living, happy child. But in the absence of certainty, we prioritize a parent's emotional well-being over a child's pain.

I'm not sure whether this is the right thing to do, but it is comforting to know that the doctors in the NICU are weighing something when they keep sick babies alive. Even if they don't often talk about death, they are thinking about it, all the time.