The ethics of not intervening

When Miri went in to pre-term labor at 21 weeks and 5 days of gestation, we didn’t feel like there was much hope of getting to a point when our baby could survive. However, we remained in the antepartum unit for eight days until her water broke, at 22 weeks and 6 days of gestation. At that point, a neonatalogist, a doctor who manages the care of premature babies, came to talk to us, and recommended against intervention. “I do not think babies at this stage should be intubated,” he said. “The results are just so poor. If you deliver after midnight tonight, I’ll be the doctor who can do that intubation, but my heart won’t entirely be in it. Twenty three weeks is just the line that we draw.”

He left. That was about 6 p.m., and we got transferred to delivery. Around 10:30 p.m., it became increasingly clear that Miri would deliver that night. The neonatologist showed back up and asked Miri if she wanted him to intubate. She said yes. At 11:20 p.m., he was born, the doctor intubated him and set him up with an assortment of machines, and put Gabriel in to a thing that looked like a plastic spaceship on wheels. (I guess they made an exception because it was so close to midnight.)

We nicknamed this neonatologist “Dr. Grumpypants,” both for his wrong recommendation, and for his mildly sarcastic manner that he kept with the medical staff. He supervised Gabriel’s care a couple more times during his stay and did a good job, but never admitted he was wrong.

Ever since then, we’ve wondered about this question of when one intervenes. A different doctor had come to us before Miri’s water broke, and explained to us that in the 22nd week of gestation, hardly any doctor would intervene to save a baby born at that point, in the 23rd week of gestation, they’ll do it if you ask, in the 24th week of gestation, they’ll try to talk you in to intervening, and after the 25th week, they more or less have to intervene.

The statistics that they told us about indicated that at 24 weeks of gestation, babies get close to a 50-50 chance of survival. At Gabriel’s stage, they were telling us that about 15 to 20 percent survive, and that of those survivors, only 15 to 20 percent live without major neurological problems. This link takes you to a chart that reflects what they were telling us. 

If you want something more complicated, try this calculator explaining various factors on survival.

This experience left us more than a little annoyed with Dr. Grumpypants for telling us not to try, especially when Gabriel’s come out so well (no neurological problems we can see yet). One of the questions I’d like to explore with this blog is that of how they came up with the dividing lines for when they’d be willing to intervene.

When it comes to end-of-life decisions, doctors and families have to think about the question of whether care would help the patient get better, or whether it’s simply prolonging the suffering before death. With premature infants, the question of withholding care is quite different than it is for older patients. With older patients, a doctor can diagnose how ill the patient is and make a recommendation. For example, if you have an elderly relative who’s had a stroke, the doctor can run tests on his brain. If he tells you that your relative is brain dead and has no hope of breathing on his own, then it makes sense to think about turning off the ventilator.

With a premature infant, there’s no good analogy to that example. Gabriel was born perfectly healthy for a baby his gestational age, but his problem was that he was no longer in the womb. Even though he was in great danger of death, it would be a mistake to call him ill. In this case, withholding care would have been about potential problems and potential suffering, not about the actual condition of our son.

For me, there’s been this what-if question that hangs over my head, “What if we’d made the wrong decision about Gabriel?” We’d have never been called to account for the mistake in this life — both state and church would have allowed us to allow nature to take its course.

I never wanted to have this kind of influence over who lives and who dies. I kind of doubt the people in the hospital wanted it, either, but dealing with it is part of their job. If Gabriel had been born a day earlier, the hospital wouldn’t have helped him.

I’d like to know why we do things this way.

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3 thoughts on “The ethics of not intervening

  1. I loved your article and i agree…we have a 22 weeker as welll. We had many momebts where we thought ‘what if’. But we are so so so happy we decided to let our son have a chance. We have never regretted it, ever. Irs been hard and scary but worth everything. My goal is that 22 weekers are no longer just a death sentance. They are alive and worth saving as well!!!!

  2. I struggled with this a bit earlier in the pregnancy. At 12w, I thought we should get the various tests done to tell about the health of the child. I didn’t know what we would do with the info, but I felt more info was better than none. An informed decision. But once I saw the ultrasound, it wouldn’t have mattered what the info was. I couldn’t have made any decision to terminate or not intervene. For my wife, it came before the ultrasound, but for me, it was seeing it. I had a friend who had a horrible experience between 12w and 20w, which was probably why I wanted the info, just in case.

    My wife had PPROM at 26w, but no labour, and managed to hold on until 36w, 5d. Our son has CP-like symptoms, but without the full diagnosis (our MRI was “unremarkable”), so no way to know when it happened, i.e. which week. But we celebrate him everyday, and his academics are off the chart (he’s six, and reading at Grade 3 level, math at about the same).

    For me, my sanity came down to the realization that the statistics were completely irrelevant. My son was Shrodinger’s cat — he wouldn’t be “20% alive” in week x, he would be alive or not. He would be fine. Or not. It was a 0 or 1, binary world. For yours and mine, the outcome was a 1. In your case, intubation saved their life until they no longer needed it.

    The flipside of course is that there are lots of people who choose to intervene, and yet have had less positive outcomes for the health of their children, often with costly ongoing medical conditions. The legal cases call them “wrongful birth”, a term which is so offensive it should be ranked up there with racist slurs.

    PolyWogg

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