Pregnant with triplets at 27 weeks of gestation, she faced a hard choice. One of the triplets was severely growth restricted, so much so that he would likely die in utero if he were not delivered early — but early delivery would increase the chances of death or impairments in the other two triplets.
What to do? Let one baby die for the benefit of the other two? Or deliver them all early, giving all of them a chance at life, albeit a possibly lower quality of life?
I pondered these questions during my discussion with the mother about possible outcomes for her children. I tried to give her as much factual data as possible to inform her decision. The survival rate for normally developed twin fetuses delivered at 27 weeks was in the 80 to 90% range. The survival rate for growth restricted fetuses was certainly less; how much less was difficult to say. Delivery at 27 weeks certainly increases the risk of impairments in children, and even more so in a growth restricted fetus, but many such deliveries do not result in major impairment. Her children's IQ would probably be less if delivered at 27 weeks versus, say, 37 weeks, and their risk of more subtle impairments like ADD or decreased executive functioning would be increased ….
What would you do in this situation? I very much wanted to tell the mother what to do: Let the small one go. Be content with two healthy kids. I had seen too many intracranial hemorrhages, necrotizing enterocolitis, and other life-changing problems in premature infants. They usually do better than the general public thinks, but still, the risks are real.
But I did not tell the mother what to do. We are taught to be nonjudgmental in these situations, to avoid paternalism. It’s not our baby, but the parents’ baby — or, in this case, babies. We have to respect the parents’ values with respect to life, death, and impairment. But is it too much to ask of a parent to let a baby die? Might it be better if medical professionals could make this decision?
The problem of paternalism is by no means confined to prenatal decisions. In very sad cases, we will offer to withdraw life support for extremely preterm infants with, say, massive intracranial hemorrhages or multisystem failure. Some parents take us up on the offer, some do not. The same thing happens in adult ICUs, for a variety of reasons, when the prognosis is so poor that continuing life support just isn’t in the patient’s best interest.
These decisions are, needless to say, the hardest a family member may ever have to make, and some of them just cannot do it. I get that. For someone without medical training, someone who is not used to dealing with life and death issues, it can seem an unfathomable task. The problem, of course, is that a decision must be made, easy or not, and sometimes withdrawing support is pretty clearly the right thing to do — and yet the family will not do it.
I think that physicians should be able to give their opinions in these cases. I don’t want to take away the autonomy of patients or their families, but many of them need help. Paternalism is not considered a good thing in medicine, but I submit that some patients need it. They need to be told to stop the ventilator.
Some physicians probably do this already. As my career went on, I became a little more liberal in offering advice to parents. In addition to offering them our best prognostication, which is never as accurate as anyone wants it to be, I started telling parents of extremely ill and premature infants, “It’s OK to stop life support,” which seemed like less judgmental phrasing than just telling them to stop life support. I came to believe that maybe they needed permission, and, perhaps, the decision would feel less wrong for them with that permission.
There are, of course, oodles of potential problems here. Not every physician feels the same way in these situations. Some would be much more aggressive in withdrawing support, maybe too much so, while others would be more aggressive in continuing support to the bitter end — again, maybe too much so. Some might be influenced inappropriately by outside considerations. But is asking a family member to make this decision alone humane? Can we not compromise and make a joint decision, rather than leaving all the decision making – and all of the guilt – to the family? I think we can.
There is a role in medicine for paternalism, probably more so in some families than in others. After careful consideration of the specifics of a case and a family, I believe gentle direction can be appropriate. Let’s just try to do it in the right way.
How have you navigated the line separating paternalism and gentle direction in your encounters with patients? Share your experiences in the comments.
Paul Holtrop is a recently retired neonatologist who lives in northern Michigan. Besides trying to keep up with the medical literature, he enjoys bicycling and cooking, plus watching college football — except, of course, for the cringe-worthy head injuries. Dr. Holtrop is a 2021–2022 Doximity Op-Med Fellow.
Illustration by April Brust