Weighing something

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 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.

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10 Comments on “Weighing something”

  1. NURIT Says:

    It is sad to hear about parents suffering with the illness of their children, and good to know that there are Doctors like you who care SO much.
    I read your blog regularly every time I can.I think about you and send you my love (and M’s too). KISSES AND HUGS Nurit.

  2. A.L. Says:

    I like your economy of words. Difficult decisions to be made. One can feel like an executioner when their Dear’s last breath seems near . Prolonged suffering, so parent’s needs are filled, well put.


  3. I am a physical therapist who worked many years with pediatric patients that survived the NICU. But first, a note about my experience there. My first affiliation (student work experience) was in the NICU – 200 miles away from my healthy 8 month old baby who was 2 minutes away from being in NICU at birth. I got to the NICU and went into shock – and it was an intern who saw it and figured out why I was standing there with tears streaming down my face. Never underestimate your ability to be of help just by being there.
    Anyways, I have worked with the babies and families that have graduated the NICU. Some ended up just fine in the long run – 20 years later. Some died – sooner than later. And some muddled along with bodies and/or brains that didn’t work just right. But…because someone like you gave your best even when you didn’t know what the outcome might be, the children and families I worked with had a chance to find out what could be in store for them. God has blessed you with a good and generous heart, and many lives will be touched by you.


  4. […] The young Dr. Signout keeps us in the world of the newborns with her story from the NICU called ‘Weighing Something’. it is very satisfying to seen an intern so acutely aware of the complexities of the NICU. I found my NICU experience to be depressing and unsatisfying for many of the reasons that Dr. Signout so eloquently describes. Her observation of the reluctance of pediatricians to discuss death is astute, and holds true even in a death-ridden speciality such as pediatric heme-onc. I look forward to her observations when she reaches that point of her training. […]

  5. Shinga Says:

    I cam her via Paediatric Grand Rounds. A thoughtful account of the hard places in medicine where ethical and social considerations can be as important as the medical.

    Regards – Shinga

  6. Flea Says:

    Well done and congratulations on your blog. I look forward to reading more.

    best,

    Flea

  7. Nancy Toby Says:

    Nicely written. As a mom of preemie triplets – one 26-weeker who didn’t make it home, and two 29-weekers who are now 3 – I just wanted to say thank you for all you do.

    And never be afraid to let the parents see your feelings of pain and sadness. Those medical people who cared about my girls enough to let their feelings show are the ones who really touched me.

  8. Neonatal Doc Says:

    You are right, we think about it all the time.

  9. Judy Says:

    Sometimes we do talk about it — and when we do, we tend to argue. Occasionally we’re in agreement about a particular baby’s prognosis, but far more often we’re remembering desperately ill babies who surprised us by becoming Eagle Scouts and graduating college.

    I think we talk more on my shift – I work nights. Sometimes we have visitors and have to watch our words. Other times it’s just us and we can think out loud.

  10. signout Says:

    One of the hardest parts of the NICU for me was talking to parents. It’s usually something I consider a strong suit of mine, but there, I felt I never knew how much to say, or how to say it. It felt like far more delicate ground. I ended up deferring to my attending a lot.
    Thanks for the thought-provoking comments.


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