What is the Procedure for Discontinuing Care of Premature Babies?

Factual Questions
1

I read an article yesterday in the paper about extremely premature babies. There was one thing that the article did not make clear, and I’m hoping somebody out there knows the answer.

When an extremely premature baby (less than 2 pounds) is born, doctors are frequently able to keep the baby alive using various “heroic” measures. Naturally, such a premature infant will have serious physical problems. The article implied that sometimes the decision is made not to keep the baby alive even if it is possible to do so.

So, if an extremely premature baby is born, who decides whether to keep him or her alive? Is it the parents, the doctor, or both? When is this decision made? What are the procedures involved in this process?

What are the legal ramifications of this decision? Is there any legal difficulty if life-support is stopped? In other words, under what conditions is “pulling the plug” considered homicide? When is it not considered homicide?

I do not mean for this to be a discussion of medical ethics–my question is not about whether it is right or wrong to discontinue care. It is simply about the procedures involved.
Manhattan: If this turns into a “great debate” (and I hope it won’t) please move it. Thanks.

2

Are the problems associated with premature babies (I think the real problems lie with under-developed respiratory systems) also associated with babies weighing in at 2lbs? I may be wrong, but 2lbs seems a potentially reasonably healthy weight, although maybe not desirable, as i’m sure it’s defined as under-weight.

3

Anything under three pounds is pretty dicey. I think the last figure I read is a 40-60% mortality rate. Even the babies that survive can have a host of later problems - cerebral palsey, epilepsy, learning disabilities, and more.

The decision to discontinue care is left to the parents with a lot of advice from the doctor’s. It’s actually very rare that the parents don’t at least try heroic measures for a little while.

From what I’ve read, once the decision is made, the baby is removed from the ventilator, IVs, and other intrusive measures, wrapped in a blanket and given to her or his parents. One of them will usually sit in a rocking chair and rock the baby until it dies.

There’s been more talk about allowing immediate family - grandparents, siblings, aunts and uncles - in to neonatal ICU so that they can at least touch or hold the baby. It helps with the grieving process and takes some of the burden off the parents.

4

I read the same article, Green Bean, and I think phouka is right. I was under the impression that the spirit of the “heroic efforts” was similar in some ways to keeping badly injured accident victims on life support-- when death is a distinct possibility, but not absolutely certain, and the decision to continue with extraordinary means is left to the next of kin.

Keep in mind that the above is largely a WAG… I also happen to agree that most parents will try those means at least temporarily.

5

Acording to the article, any baby born under 3 lbs 4 ozs (1500 grams) is considered extremely premature/underweight. Those under 1 lb 10 ozs (750 grams) are "micro-preemies.)

(I’m not sure how much an average full-term baby weighs, but I think that it is a usually at least 6 pounds.)

6

We went through 3 normal (thank God) pregnancies, labors, and deliveries in the 1980’s, and IIRC, we were told that if it DID turn out that the baby had what are euphemistically termed “problems”, that as the parents we were entitled to authorize what was called a DNR, for “Do Not Resuscitate”. This meant, in medical terms, that all possible ORDINARY measures would be taken to keep the baby alive, such as intravenous feeding, but not EXTRAORDINARY, i.e. total life support for an infant in a vegetative state, or with a terrible physical deformity that would not be surviveable under ordinary conditions. The “do not resuscitate”, we were told, meant that basically if the baby wasn’t breathing, they would not put it on total life support.

Now, we did hear stories of parents who SAID that their baby was born with “problems” but that the medical personnel who were present didn’t ask them what they wanted, but simply rushed the baby away into surgery or the Neonatal Unit. We had to take those stories with a grain of salt–so much depends on the hospital involved, for one thing. If you’re having your baby in a big teaching or research hospital, the doctors are much more likely to want to try to keep the baby alive as long as possible. It’s not exactly the same thing as “having new material to experiment on,” is it? Does that sound awfully cynical?

If you’re having your baby at a smaller, local hospital, however, one that might not even have a Neonatal Unit (meaning the baby would have to be helicoptered somewhere else), then I think the staff are much more likely to encourage you, or at least to allow you, to authorize a DNR order.

Also, a smaller hospital will have more time to deal with you on an individual basis.

To address the OP, then, it’s the parents who have the final say. Of course, sometimes a doctor or the labor room nurse will exert pressure to have the decision go the way they want. Most medical personnel are very dedicated to saving life at any cost.

Usually you know well ahead of time that your baby might have “problems”, what with increasingly sophisticated ultrasound imaging techniques. When we first started, all ultrasound would give you was just a basic sort of “baby shape”, but nowadays you can tell all kinds of stuff, including possible birth defects.

So you have time to think about how you want to handle it.

AFAIK, it is never “homicide” for the legal guardians to authorize “pulling the plug”. It IS homicide when someone sneaks into the Intensive Care Unit and pulls your plug so you can’t testify against him, but preemies don’t usually have to worry about this. :smiley:

7

I have a good friend who is a NICU Nurse. She’s been at it for over 20 years. She and I have talked about this, and while she is open with me, she always is very careful when speaking about this.
It seems to me that the urge to save a life, to guarantee that a new life is NOT given up on, is tempered with the knowledge that the life may not be such a sentient one. I won’t debate the morals or ethics here either. From what she’s told me, there are ways, and there are ways. Simply moving a little bit slower when a baby “Codes” is enough. Knowing what the parents wishes are, and acting accordingly without such a dramatic gesture as “pulling the plug” happens more than anyone probably can imagine.
Tragic, but true.

8

My experience in this matter is firsthand: my daughter (now almost 13) was premature. She was born at 27 weeks gestation (11 weeks early) and weighed 2 lb., 9 oz. She was very, very sick and spent 7 weeks in the NICU before we could bring her home. She had all or most of the standard preemie problems: immature lungs that caused her to be on a ventilator for 5 weeks; Patent Ductus Arteriosis – a common heart problem that was, fortunately, resolved with medication; a severe septic infection after she was off the ventilator – severe enough to cause breathing and heartbeat problems so that she had to be re-intubated for a week; and a Grade IV Interventricular Hemorrhage – bleeding into the ventricles of the brain. We were fortunate there, too – despite the severity of the brain bleed, it resolved itself (the fluid reabsorbed somehow) and she never needed a shunt. As I said, she was very sick indeed. Upon birth, she was given a 40% chance of survival. That number drifted up to about 75%, except during the Sepsis episode, when it dropped down to 30%. Signing a Do Not Resuscitate order was never presented to us as an option. She was born via an emergency c-section. We were told that she might not be born alive, but were never given an option about whether or not she should be resuscitated if dead. As it turned out she was born alive (but not breathing) and was put on the ventilator – we were not asked whether this should be done, BTW. When the doctors came to tell my husband how we were after the surgery, Dori was already hooked up in the NICU. Although I don’t think Dori ever needed resuscitation in the classic sense, her whole first 6 weeks consisted of ‘heroic means’ without which she would definitely have died. No one EVER mentioned a Do Not Resuscitate order to us. Now, maybe this is because, in hindsight, Dori was pretty large and healthy for a severe preemie. Although she was very sick, her progress was steady with occasional setbacks. Sick as she was, there were much sicker babies there, perhaps their experience was different. It may also have something to do with the fact that Dori was born at St. Joseph’s Hospital in Marshfield, WI – a well-known hospital with a top-notch NICU department. Frankly, I never read articles about preemies – it is still too tender a topic for me. All I have is my own experience to relate.

9

We were dealing with a fairly small local hospital in a medium-sized Midwestern town. The only NICU facility they had was just the basics, and all the very sick babies had to be helicoptered to the state capital about 45 miles away. Interestingly, it was a Catholic-affiliated hospital, which among other things flatly refused to allow its resident doctors to perform abortions, so I’m sure that they devoutly wished for all babies to survive. But they just didn’t have the funding or the equipment.

Also, this was 10-15 years ago, so they may have gotten a bigger NICU by now.

Also, Jess, you had Dori delivered by C-section, so the doctors knew you already had an emotional investment in her. They knew you were already committed to keeping her–you don’t go through a C-section for something you don’t want. It’s not as if she was suddenly delivered vaginally in premature, fast labor, you know, the baby comes shooting out in the taxi and then people have to deal with it. You had time to think about what you wanted to do. So maybe you just don’t remember the subject of a DNR because early on, you voiced your opinion and it wasn’t like the doctor was going to nag you about it or anything, “come on, pretty please, let us kill this baby…”

Doctors are usually pretty sensitive to hints along those lines. When chorionic villi testing came in, our obstetrician asked us, in a general sort of way, if we were interested, and when we said, “No, because if it came out positive, we wouldn’t dream of aborting the fetus anyway, so what’s the point?”, he never mentioned the subject again.